Believe In Tomorrow ONTARIO RETT SYNDROME ASSOCIATION 2018 CONFERENCE

 
Believe In Tomorrow ONTARIO RETT SYNDROME ASSOCIATION 2018 CONFERENCE
Believe In Tomorrow
ONTARIO RETT SYNDROME ASSOCIATION 2018 CONFERENCE

     April 13, 14 & 15, 2018

   HE L PI NG FAMILIES & IN D IV ID UA LS WI T H
         RETT SY NDROME FOR 27 YEA RS
Believe In Tomorrow ONTARIO RETT SYNDROME ASSOCIATION 2018 CONFERENCE
MESSAGE FRO M

OUR MISSION
The Ontario Rett Syndrome Association (O.R.S.A.) exsists to ensure that children and adults with
Rett Syndrome are enabled to achieve their full potential and enjoy the highest quality of life
within their community.

www.rett.ca

                          Conference Sponsors:
        The Edwards Family Charitable Foundation
                           Ontario Brain Institute

1
Believe In Tomorrow ONTARIO RETT SYNDROME ASSOCIATION 2018 CONFERENCE
THE CHAIR                                                                                  2
“BELIEVE IN TOMORROW” – The Ontario Rett Syndrome Association’s 2018 conference extraordinaire.
Twenty-eight (28) guest speakers in total! Fourteen (14) of which are Clinicians, some of those clinicians
are also Researchers. Seven basic Scientists added to the mix. Topped up with two (2) newcomers
from Literacy and Communications, that have never presented at an O.R.S.A. conference. We are so
excited to welcome all our speakers, past and new, to this year’s Believe In Tomorrow Conference and
to our growing O.R.S.A. family.

Complexity is often used to describe Rett syndrome. Based on all complexities, this conference has
brought together enough knowledge to assist you while you navigate your journey. The conference
will help you to understand you are not alone. With every question there should be an answer. For
the novice to the most seasoned individual this conference has something for you. Attending this
conference may open your mind to things you may not have considered. The latest research updates,
both Canadian and International Clinic Trial information will be shared, literacy techniques, adulthood
living, sustaining your future and so much more!

                        Alone we can do so little, together we can do so much
                                              Helen Keller

     Please join us in April at the 2018 conference because we all should “Believe In Tomorrow”.

                                        Sherry Lawrence
                                        Conference Chair
Believe In Tomorrow ONTARIO RETT SYNDROME ASSOCIATION 2018 CONFERENCE
CONFERENCE
April 12 – Thursday Evening

6:00 – 8:00 p.m. 		        Early Registration

April 13 – Friday
Research Day:

8:00 – 8:30 a.m.		         Registration

8:30 – 8:45 a.m. 		        Welcome

8:45 – 9:30 a.m. 		        Genetics 101: DR. VICKY SIU and DR. PATRICK MACLEOD

9:30 – 10:15 a.m. 		       Research Updates: DRS. JAMES EUBANKS, JOHN VINCENT, JAMES ELLIS

10:15 – 10:30 a.m.         Break

10:30 – 11:30 a.m.         Research Updates: DRS. MONICA JUSTICE, JASON LERCH, DAVID KATZ

11:30 – 12:00 p.m.         Question Panel – moderated by DR. MACLEOD

12:00 – 1:00 p.m. 		       Lunch

1:00 – 1:15 p.m. 		        Post-Mortem Brain Donation Protocol: DR. PATRICK MACLEOD

1:15 – 1:45 p.m. 		        2017 Research Grant Recipients: DR. DAVID GRYNSPAN & DR. SARAH SCHOCK

1:45 – 2:15 p.m. 		        Natural History Study: DR. ALAN PERCY

2:15 – 2:30 p.m. 		        Break

2:30 – 3:00 p.m. 		        International Clinical Trials: DR. JEFFREY NEUL

3:00 – 3:15 p.m.		         Top 10 Priorities for Neurodevelopmental Disorders in Ontario

3:15 – 4:00 p.m. 		        Clinical Trials in Canada: DR. EVDOKIA ANAGNOSTOU

4:00 – 4:30 p.m. 		        Question Panel - moderated by DR. MACLEOD

Please Note: Friday dinner is not provided as part of the conference package. There are two restaurants on site.

Family Social Night 7:30 – 9:00 p.m.

This optional event is designed for families of someone with Rett syndrome, but everyone is welcome to join us! Check out our
Rett syndrome trivia game. Guess the number of “chromosomes” in the jar. Get to know other families who live near you or who
have children around the same age. Find out about the best ways to stay connected between conferences. This is a very low-key
gathering. Feel free to drop in!

			April                           14 – Saturday

3
			Medical Management:

          		               8:30 – 9:00 a.m.            Medical Surveillance Guidelines for Rett Syndrome: DR. MELISSA CARTER

          		               9:00 – 9:30 a.m. 		         Management of Seizures: DR. ERICK SELL

          		               9:30 – 10:00 a.m.           Gastrointestinal Problems in Rett Syndrome: DR. KEVIN BAX
Believe In Tomorrow ONTARIO RETT SYNDROME ASSOCIATION 2018 CONFERENCE
AGENDA                                                                                                               4
		                  10:00 – 10:15 a.m.        Break

10:15 – 10:45 a.m.          Musculoskeletal Considerations in Rett Syndrome: DR. CAITLIN CASSIDY

10:45 – 11:15 a.m.          Complex Care Plans: ERIN BRANDON AND NANCY CAMPBELL

11:15 – 12:00 p.m.          Question Panel – Several doctors will be available to answer your questions.

12:00 – 1:00 p.m. 		        Lunch

                                                  Trillium B                                           Trillium C

1:00 – 1:45 p.m.              Celebrating Progress: Look Who’s Talking!           Adult Medical Issues
                              Parent reflections on communication                 JANE LANE, DR. CAITLIN CASSIDY
                              JENNIFER FACCHINELLI, KAREN CONGRAM
1:45 – 2:30 p.m.              “Motivate, Model, Move Out of the Way!”             My Direct Plan: Funding Management for Passport,
                              Strategies to Overcome Apraxia                      Residential and Special Services at Home
                              KATE AHERN                                          HASSNANE SAJAN
2:30 – 2:45 p.m.                                                              Break
2:45 – 3:30 p.m.              Aided Language Input Made Easy - Strive For Five!   Organizing Support for the Adult Years:
                              DR. CAROLINE MUSSELWHITE                            Parent reflections on a meaningful lifestyle
                                                                                  TERRY BOYD, SHERRY LAWRENCE
3:30 – 4:15 p.m.              Tips and Tricks for AAC Programming                 Breathing Problems in Rett Syndrome
                              TOBII DYNAVOX REPRESENTATIVE                        DR. JACKIE CHIANG

Celebration Dinner

5:30 – 6:30 p.m.  		        Reception, Group Photo

6:30 – 9:00 p.m.  		        Dinner, Awards & Tributes

9:00 – 11:00 p.m.  	        Hospitality Room Open

April 15 – Sunday
Concurrent Session:

                                                  Trillium B                                           Trillium C

8:30 – 10:00 a.m.             AAC Interaction During Shared Reading               Sustaining your Future:
                              DR. CAROLINE MUSSELWHITE                            Person-Centred Planning and Microboards
(Double Session)                                                                  BRENDON POORAN, PARTNERS FOR PLANNING
10:00 – 10:15 a.m.                                                            Break
10:15 – 11:00 a.m.            Expectations without Demands:                       Consent, Capacity & Legal Decision- Making
                              An Apraxia-sensitive approach to                    BRENDON POORAN, PARTNERS FOR PLANNING
                              communication goals
                              KATE AHERN
11:00 – 11:45 a.m.            All She Wants is TV! Strategies to Manage           Mental Fitness: Applying mindfulness to
                              Screen Addiction                                    decrease stress and increase happiness
                              KATE AHERN                                          ELLI WEISBAUM

11:45 – 12:00 p.m.          Final Remarks and Conference Feedback Forms

12:00 p.m. 		               Lunch and Goodbye
Believe In Tomorrow ONTARIO RETT SYNDROME ASSOCIATION 2018 CONFERENCE
Kate Ahern is an assis,ve technology specialist and a teacher of
                                                                                                                             learners with mul,ple or significant special needs. She has a

      5 SPEAKER
                                                                                                                             Masters of Educa,on in Intensive Special Needs. She comes to us
                                                                                                                             with years of teaching experience with all age groups and in
                                                                                                                             various seAngs in MassachuseBs. Kate is passionate about
                                                                                                                             helping nonverbal students reach their communica,on poten,al
                                                                                                                             through the use of augmenta,ve and alterna,ve communica,on
                                                                                                                             (AAC). She currently works in private prac,ce, consul,ng in
                                                                                                                             schools and homes, developing and leading AAC groups and
                                                                                                                             tutoring individuals in literacy and communica,on.

                                                                                               !

                                                                                               Kate Ahern
                       Kate Ahern is an assis,ve technology specialist and a teacher of
                       learners with mul,ple or significant special needs. She has a                                      Dr. Evdokia Anagnostou, MD, is a child neurologist and senior
                        KATEof Educa,on
                       Masters         AHERN,in IntensiveisSpecial
                                                               anNeeds. assistive
                                                                           She comes to us                                DR. scien,st
                                                                                                                         clinician   EVDOKIA                ANAGNOSTOU,
                                                                                                                                             at Holland Bloorview     Kids Rehabilita,on
                        technology
                       with                specialist
                            years of teaching               andall age
                                              experience with       a teacher
                                                                        groups and in                                     MD, Dr.
                                                                                                                         Hospital.   is Anagnostou
                                                                                                                                           a child    is also neurologist
                                                                                                                                                               the Assistant Directorandof Holland
                                                                                                                         Bloorview's   Research Ins,tute;
                                                                                                                          senior clinician                    co-leadingat
                                                                                                                                                        scientist         the Holland
                                                                                                                                                                               Au,sm Research
                        of learners
                       various seAngs in with     multiple
                                          MassachuseBs.     Kateor   significant
                                                                 is passionate about
                       helping nonverbal  students  reach  theiracommunica,on    poten,al                                Centre (ARC). Dr. Anagnostou holds a Canada Research Chair in
                        special      needs.      She    has         Masters of                                            Bloorview Kids Rehabilitation Hospital.
                                                                                                                         transla,onal therapeu,cs in Au,sm Spectrum Disorder (ASD) and
                       through the use of augmenta,ve and alterna,ve communica,on
                        Education in Intensive Special Needs.                                                             Dr.Dr. Anagnostou
                                                                                                                         the      Stuart D. Sims Chairisin Au,sm
                                                                                                                                                             also atthe      Assistant
                                                                                                                                                                        Holland  Bloorview. Her
                       (AAC). She currently works in private prac,ce, consul,ng in                                       Dr. Kevin focuses
                                                                                                                                    Bax, MD,onjoined   the Department     of Paediatrics   at the
                        She comes
                       schools and homes,todeveloping
                                             us with andyears     of teaching
                                                             leading  AAC groups and                                      Director
                                                                                                                         research            of       Holland
                                                                                                                                                 transla,ng   genomic andBloorview’s
                                                                                                                                                                             systems biology
                                                                                                                         Children’s  Hospital  London Health     Sciences
                                                                                                                                                                      She in  2009. anHe was born
                        experience
                       tutoring individualswith   all age
                                           in literacy        groups and in
                                                       and communica,on.                                                  Research
                                                                                                                         findings   into novelInstitute;
                                                                                                                                               treatments    forco-leading
                                                                                                                                                                 ASD.      is also    the
                                                                                                                                                                                       associate
                                                                                                                         in Thunder Bay, Ontario.
                                                                                                                         professor                    He moved     to Michigan   to completeofhis
                        various settings in Massachusetts. Kate                                                           Autismin theResearch
                                                                                                                         undergraduate
                                                                                                                                            department
                                                                                                                                          training
                                                                                                                                                           of pediatrics
                                                                                                                                                                Centre
                                                                                                                                                     at Calvinwith
                                                                                                                                                                College,
                                                                                                                                                                         at the(ARC).
                                                                                                                                                                         Grand
                                                                                                                                                                                 University
                                                                                                                                                                                 Rapids,
                                                                                                                         Toronto,   which is fully affiliated         Holland  Bloorview.
                        is passionate about helping nonverbal                                                             Dr. Anagnostou
                                                                                                                         Michigan.   He then graduatedholds            a University
                                                                                                                                                            from Indiana     Canada    School of
!                                                                                              !
                        students reach their communication                                                                Research
                                                                                                                         Medicine.   He servedChair
                                                                                                                                                  as paediatricinresident,
                                                                                                                                                                       translational
                                                                                                                                                                            as well as a paediatric
  potential
  Kate Ahern through the use of augmentative and alternative                                     therapeutics
                                                                                                 Evdokia                 gastroenterology
                                                                                                         Anagnostouin Autism     Spectrum    fellow  at James Whitcomb
                                                                                                                                                   Disorder       (ASD) RileyandHospital
                                                                                                                                                                                      the for
                                                                                                                         Children. Dr. Bax is part of the ReB syndrome clinic located at
  communication (AAC). She currently works in private                                            Dr. Stuart D. Sims Chair           in Autism at Holland Bloorview.
                       Dr. Evdokia Anagnostou, MD, is a child neurologist and senior                                     Thames Valley Children’s Centre in London, Ontario.
  practice, consulting     in schools and homes, developing                              Her research focuses on translating genomic and systems
                       clinician scien,st at Holland Bloorview Kids Rehabilita,on
                       Hospital. Dr. Anagnostou is also the Assistant Director of Hollandbiology findings into novel treatments for ASD. She is also
  and leading AAC groups         and   tutoring     individuals     in literacy
  and communication.   Bloorview's Research Ins,tute; co-leading the Au,sm Research !an associate professor in the department of pediatrics
                       Centre (ARC). Dr. Anagnostou holds a Canada Research Chair in at the University of Toronto, which is fully affiliated with
                       transla,onal therapeu,cs in Au,sm Spectrum Disorder (ASD) and     Kevin Bax
                                                                                         Holland Bloorview.
                       the Dr. Stuart D. Sims Chair in Au,sm at Holland Bloorview. Her
                       research
                       Dr. Kevin focuses
                                 Bax, MD,onjoined
                                               transla,ng  genomic and
                                                    the Department         systems biology
                                                                       of Paediatrics   at the                            Terry Boyd has years of experience volunteering and advoca,ng
                        DR. into
                       findings
                       Children’sKEVIN
                                   Hospital       BAX,
                                      novel treatments
                                             London       forMD,
                                                       Health ASD.    joined
                                                                    She
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                                                                         in 2009.   the
                                                                                 anHeassociate
                                                                                       was born                           inTERRY       BOYD,
                                                                                                                              the field of             has years
                                                                                                                                          developmental                 of experience
                                                                                                                                                               disabili,es.
                       professor
                          ThunderinBay,
                                     the Ontario.
                                         department     of pediatrics  at the to
                                                                               University
                       in
                        Department               ofHePaediatrics
                                                        moved   to Michigan  at     the ofhis
                                                                                  complete                                She’s  held numerous board
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                                                                                                                                                              advocating                  with
                                                                                                                                                                                     in the
                       Toronto, which is
                       undergraduate       fully affiliated
                                        training  at Calvinwith  Holland
                                                             College, GrandBloorview.
                                                                               Rapids,                                    Community Living, the Ministry of Community & Social Services
                        Children’s           Hospital         London          Health
                       Michigan. He then graduated from Indiana University School of
                                                                                                                            field     of    developmental                      disabilities.
!                                                                                                                         (MCSS) and the Ministry of Health (MOH). Many will know Terry
                        Sciences
                       Medicine.         in as
                                   He served    2009.      Heresident,
                                                  paediatric      was asborn well as ain
                                                                                       paediatric                         asShe’s
                                                                                                                              the formerheld
                                                                                                                                          presidentnumerous
                                                                                                                                                       of the Ontario ReB  boardSyndrome and
Evdokia Anagnostou      Thunder Bay,
                       gastroenterology    fellow atOntario.
                                                      James Whitcomb He Rileymoved
                                                                                 Hospital for                               committee
                                                                                                                          Associa,on.           positions
                                                                                                                                        Terry and    her husband,  withDean Community
                                                                                                                                                                               have three children.
                        to Michigan
                       Children.                      to ReB complete
                                  Dr. Bax is part of the                             his at
                                                               syndrome clinic located                                    Erin
                                                                                                                          The   Brandonthe
                                                                                                                            Living,
                                                                                                                                youngest, RN  (EC), MN
                                                                                                                                                Ministry
                                                                                                                                           Kayleigh,      is the
                                                                                                                                                       is 30     of
                                                                                                                                                              yearsPaediatric
                                                                                                                                                                          and Nurse
                                                                                                                                                                      Community
                                                                                                                                                                     old              Prac,,oner
                                                                                                                                                                                has ReB      & at
                                                                                                                                                                                         syndrome.
                       Thames   Valley Children’s Centre    in London,                                                    the Holland   Bloorview    Kids isRehabilita,on      Hospital Complex   Care
                        undergraduate                  training        atOntario.
                                                                               Calvin                                     Kayleigh
                                                                                                                            Social
                                                                                                                          Neuromotor
                                                                                                                                    lives at home and
                                                                                                                                       Services
                                                                                                                                         & ReB
                                                                                                                                                      (MCSS)
                                                                                                                                                 Syndrome
                                                                                                                                                              supported
                                                                                                                                                                     and
                                                                                                                                                                Clinics.
                                                                                                                                                                            by  her Ministry
                                                                                                                                                                              the   parents  and peer
                                                                                                                          staffing who are     funded     by MOH      HomeShe    hasProgram
                                                                                                                                                                            Care   exper,seandand
                                                                                                                                                                                                MCSS
                     College, Grand Rapids, Michigan.                                                                       of Health
                                                                                                                          professional      (MOH).
                                                                                                                                        interest  in the Many
                                                                                                                                                           medical     will    knowofTerry
                                                                                                                                                                      management         children  with
                                                                                                                          Passport Program.     Kayleigh    lives a full life volunteering,  enjoying
!
                     He then graduated from Indiana                                !                                        as experiences
                                                                                                                          medical
                                                                                                                          new    the   former
                                                                                                                                    complexity.     president
                                                                                                                                              andErin   will beher
                                                                                                                                                    direc,ng           of living.
                                                                                                                                                                             the two
                                                                                                                                                                  co-presen,ng
                                                                                                                                                                     daily         Ontario
                                                                                                                                                                                        sessions with
                     University School of Medicine. He                                                                      RettCampbell:
                                                                                                                          Nancy     Syndrome   “Complex Association.
                                                                                                                                                            Care Plans” andTerry “Keepingand
                                                                                                                                                                                           Fun on the
served
Kevin Bax as paediatric resident, as well as a paediatric                              her Boyd
                                                                                     Terry    husband,                DeanAgenda”.
                                                                                                                               have three children. The youngest,
gastroenterology fellow at James Whitcomb Riley Hospital                               Kayleigh, is 30 years old and has Rett syndrome. Kayleigh
                    TerryisBoyd
for Children. Dr. Bax        parthas of
                                     yearsthe
                                           of experience volunteering and
                                                Rett syndrome             advoca,nglives at home and is supported by her parents and peer
                                                                       clinic
located at Thamesin the     field of developmental disabili,es.
                       Valley     Children’s Centre in London,                         staffing who are funded by MOH Home Care Program
                    She’s held numerous board and commiBee posi,ons with
Ontario.            Community Living, the Ministry of Community & Social Services and MCSS Passport Program. Kayleigh lives a full life
                                                                                     !
                    (MCSS) and the Ministry of Health (MOH). Many will know Terryvolunteering, enjoying new experiences and directing her
                                                                                       Erin Brandon
                    as the former president of the Ontario ReB Syndrome                daily living.
                       Associa,on. Terry and her husband, Dean have three children.
                       Erin Brandon RN
                       The youngest,      (EC), MN
                                       Kayleigh,     is the
                                                  is 30      Paediatric
                                                         years  old and Nurse   Prac,,oner
                                                                          has ReB   syndrome.at                              Nancy Campbell, RPN, is a Registered Prac,cal Nurse at Holland
                        ERIN
                       the Holland
                       Kayleigh   BRANDON,
                                    Bloorview
                                lives                      RN (EC),
                                                Kids isRehabilita,on
                                      at home and        supported         MN
                                                                       byHospital
                                                                          her    isComplex
                                                                              parentsthe    Care
                                                                                       and peer                               NANCY
                                                                                                                             Bloorview        CAMPBELL,
                                                                                                                                         Kids Rehabilita,on          is a
                                                                                                                                                             Hospital.  SheRegistered
                                                                                                                                                                             is the ReB Syndrome
                       Neuromotor
                        Paediatric
                       staffing        & ReB
                               who are       Syndrome
                                            Nurse
                                         funded            Clinics.
                                                              HomeShe
                                                        Practitioner
                                                   by MOH                hasProgram
                                                                       Care  exper,se
                                                                              at the    and
                                                                                      and MCSS                               Clinic’s nurse coordinator.
                                                                                                                              Practical       Nurse at   This Holland
                                                                                                                                                              clinic provides   comprehensive
                                                                                                                                                                            Bloorview
                       professional
                       Passport     interest
                                 Program.     in the medical
                                            Kayleigh   lives     management
                                                             a full             of children
                                                                    life volunteering,       with
                                                                                       enjoying                              medical
                        Holland       Bloorview           Kids    Rehabilitation                                              Kids care     and care coordina,on
                                                                                                                                        Rehabilitation              for individuals
                                                                                                                                                                Hospital.         Shewith ReB
                                                                                                                                                                                          is
!                      medical  complexity.
                       new experiences    andErin  will beher
                                               direc,ng     co-presen,ng
                                                                daily living.two sessions with                               syndrome less than 18 years of age. Nancy also coordinates the
                        Hospital
                       Nancy  Campbell:Complex
                                           “Complex Care  CarePlans” Neuromotor
                                                                       and “Keeping Fun on the                                the Rett Syndrome Clinic’s nurse
                                                                                                                             Hypertonia and Spina Bifida/Spinal Cord Injury Clinics. Nancy will
Terry Boyd              & Rett Syndrome Clinics. She has
                       Agenda”.                                                                                               coordinator. This clinic provides
                                                                                                                             be co-presen,ng two sessions with Erin Brandon: “Complex Care
                        expertise and professional interest in                                                                comprehensive
                                                                                                                             Plans”   and “Keeping Fun onmedical
                                                                                                                                                           the Agenda”. care and
                        the medical management of children                                                                    care coordination for individuals with
                        with medical complexity                                                                               Rett syndrome less than 18 years of
                                                                                               !                              age. Nancy also coordinates the
!
                                                                                                                              Hypertonia and Spina Bifida/Spinal
Erin Brandon
                                                                                               Nancy Campbell                 Cord Injury Clinics.

                       Nancy Campbell, RPN, is a Registered Prac,cal Nurse at Holland
                       Bloorview Kids Rehabilita,on Hospital. She is the ReB Syndrome
                       Clinic’s nurse coordinator. This clinic provides comprehensive
                       medical care and care coordina,on for individuals with ReB
                       syndrome less than 18 years of age. Nancy also coordinates the
                       Hypertonia and Spina Bifida/Spinal Cord Injury Clinics. Nancy will
                       be co-presen,ng two sessions with Erin Brandon: “Complex Care
                       Plans” and “Keeping Fun on the Agenda”.
Believe In Tomorrow ONTARIO RETT SYNDROME ASSOCIATION 2018 CONFERENCE
Dr. Melissa Carter, MD, is a clinical gene,cist at The Children's
                                                                                                                                             Hospital of Eastern Ontario (CHEO), and Assistant Professor at the
                                                                                                                                             University of OBawa. She has recently replaced Dr. Peter

BIOGRAPHIES
                                                                                                                                             Humphreys as the Medical Director of the CHEO ReB Syndrome
                                                                                                                                             Clinic. Prior to joining CHEO in 2016, Dr. Carter was at The
                                                                                                                                             Hospital for Sick Children in Toronto. She was the Founder and
                                                                                                                                             Medical Director of the ReB Syndrome Clinic at Holland
                                                                                                                                             Bloorview from 2013-2016. She also completed a clinical
                                                                                                                                             fellowship in Developmental Paediatrics at Holland Bloorview
                                                                                                                                             Kids Rehabilita,on Hospital in Toronto (2009-2011).
                                                                                                           !

                                                                                                           Melissa Carter

                                                                                                                                             Dr. Caitlin Cassidy, MD, completed Medicine at the University of
                                  DR.
                                 Dr.       MELISSA
                                     Melissa Carter, MD, is aCARTER,
                                                              clinical gene,cistMD, at The is
                                                                                            Children's
                                                                                                a                                             DR. in 2009
                                                                                                                                             OBawa        CAITLIN             CASSIDY,
                                                                                                                                                              and her residency                    MD,
                                                                                                                                                                                  training in Physical Medicine
                                 Hospital of Eastern Ontario (CHEO), and Assistant Professor at the                                          and   Rehabilita,on her
                                                                                                                                              completed           (PM&R)   at Western University
                                                                                                                                                                        residency        training in 2014.
                                                                                                                                                                                                       in She is
                                  clinical geneticist at The Children’s
                                 University of OBawa. She has recently replaced Dr. Peter                                                    currently  an Assistant Professor  in the Departments of PM&R and
                                  Hospitalas of
                                 Humphreys            Eastern
                                                 the Medical        Ontario
                                                              Director  of the CHEO (CHEO),
                                                                                         ReB Syndrome
                                                                                                                                              Physical      Medicine        and      Rehabilitation
                                                                                                                                             Paediatrics at Western University. Dr. Cassidy’s main clinical focus
                                  andPrior
                                 Clinic. Assistant
                                              to joiningProfessor
                                                         CHEO in 2016, atDr.the   University
                                                                              Carter  was at The                                              (PM&R) at Western University in 2014.
                                                                                                                                             is in the Transi,onal and Lifelong Care (TLC) Program, housed
                                  of Ottawa.
                                 Hospital            She has
                                          for Sick Children       recently
                                                            in Toronto.  She was  replaced
                                                                                     the Founder and                                          She is atcurrently
                                                                                                                                             primarily                  an Assistant
                                                                                                                                                           Parkwood Ins,tute,   St. Joseph’sProfessor
                                                                                                                                                                                             Health Care London
                                 Medical  DirectorHumphreys
                                  Dr. Peter         of the ReB Syndrome
                                                                      as the Clinic at Holland
                                                                                    Medical                                                   in Joseph’s).
                                                                                                                                             (St.   the Departments
                                                                                                                                                             The program provides oflong
                                                                                                                                                                                       PM&R        and
                                                                                                                                                                                          term rehabilita,ve care
                                 Bloorview
                                  Director  fromof2013-2016.
                                                     the CHEO  She alsoRett
                                                                         completed      a clinical
                                                                                 Syndrome                                                     Paediatrics
                                                                                                                                             to  people with chronicatandWestern          University.
                                                                                                                                                                           some,mes complex      condi,ons of
                                 fellowship in Developmental Paediatrics at Holland Bloorview                                                childhood   onset, including
                                  Clinic.    Prior    to   joining      CHEO
                                 Kids Rehabilita,on Hospital in Toronto (2009-2011).
                                                                                     in   2016,                                               Dr. Cassidy’s         mainReB    syndrome.focus
                                                                                                                                                                             clinical      Dr. Cassidy’s
                                                                                                                                                                                                   is inother
                                                                                                                                             clinical responsibili,es include inpa,ent coverage of the
                         Dr. Carter was at The Hospital for                              !
                                                                                                                                              the Transitional and Lifelong Care
!                                                                                                                                            Musculoskeletal Rehabilita,on unit at Parkwood Ins,tute.
                         Sick Children in Toronto. She was the                                                        (TLC) Program, housed primarily at
Founder
Melissa Carterand Medical Director of the Rett Syndrome Clinic                             Parkwood
                                                                                           Caitlin Cassidy Institute, St. Joseph’s Health Care London (St.
at Holland Bloorview from 2013-2016. She also completed                                    Joseph’s). The program provides long term rehabilitative
a clinical fellowship  Dr. Caitlin Cassidy, MD, completed Medicine
                              in Developmental                                 at ofcare to people with chronic and sometimes complex
                                                                     at the University
                                                            Paediatrics
                       OBawa in 2009 and her residency training in Physical Medicine conditions of childhood onset, including Rett syndrome.
Holland Bloorview Kids          Rehabilitation Hospital in Toronto
                       and Rehabilita,on (PM&R) at Western University in 2014. She is
(2009-2011).           currently an Assistant Professor in the Departments of PM&R and
                                                                                           Dr. Cassidy’s other clinical responsibilities include inpatient
                       Paediatrics at Western University. Dr. Cassidy’s main clinical focuscoverage of the Musculoskeletal Rehabilitation unit at
                       is in the Transi,onal and Lifelong Care (TLC) Program, housed Parkwood Institute.
                                  primarily at Parkwood Ins,tute, St. Joseph’s Health Care London                                                 Insert photo and text alphabetically by last name.
                                  (St. Joseph’s). The program provides long term rehabilita,ve care
                                  toDR.            JACKIE                      CHIANG,                                                             KAREN           CONGRAM,
                                  Dr. Jackie  Chiang,      MD,    completed        her   medical   degree    at
                                                                                                          MD, of the                                                                       is Coach
                                                                                                                                                                                               a Learning
                                      people with       chronic and some,mes              complex condi,ons                                       Karen   Congram     is a Learning for All            who works with
                                  University of OBawa, followed by a Paediatric residency at the
                                    completed
                                  childhood                   her
                                                onset, including          medical
                                                                          ReB syndrome.degree  Dr. Cassidy’sat
                                  University of Toronto. She subsequently completed a Paediatric
                                                                                                                other                              for   All
                                                                                                                                                  teachers   Coach
                                                                                                                                                             to design    who
                                                                                                                                                                         for      works
                                                                                                                                                                             inclusive     with
                                                                                                                                                                                        education. teachers
                                                                                                                                                                                                      She serves on
                                  clinical
                                    the responsibili,es
                                             University            includeOttawa,
                                                                               inpa,ent coverage of the                                           the
                                                                                                                                                   toBoard    of Directors   for the Ontario   Rett Syndrome
   !                              Respirology      fellowship atof      the Hospital for Sickfollowed
                                                                                                   Children, where                                      design      for inclusive       education.         She
                                  Musculoskeletal Rehabilita,on unit at Parkwood Ins,tute.                                                        Association. She is a mother of three, including Abby (18)
                                    bywasathe Paediatric
                                  she              Chief Fellow. Sinceresidency the comple,on at     of Dr.the
                                                                                                            Chiang’s                               serves     on   the   Board      of  Directors
                                                                                                                                                  who has Rett syndrome. Together, Karen and Abby have
                                                                                                                                                                                                       for  the
     Caitlin Cassidy                University
                                  studies,   she hasof       Toronto.
                                                         worked       at Holland She     subsequently
                                                                                      Bloorview   Kids Rehabilita,on                               Ontario
                                                                                                                                                  been   learningRett      Syndrome
                                                                                                                                                                   and teaching              Association.
                                                                                                                                                                                    about communication,       literacy
                                  Hospital
                                    completedwhere she a     remains       involved in the
                                                                    Paediatric                  respiratory care of
                                                                                            Respirology                                            She
                                                                                                                                                  and      is a mother
                                                                                                                                                        eye-tracking   technology offorthree,     including
                                                                                                                                                                                        almost five    years.
                                  children with neurodevelopmental or musculoskeletal condi,ons.
                                    fellowship
                                  Dr.
                                  Dr.  Jackie Chiang,
                                      Chiang
                                                            at completed
                                                           MD,
                                                also recently
                                                                    the         Hospital
                                                                     rejoined the   herDivision
                                                                                         medicaloffor
                                                                                                    degreeSickat the
                                                                                                     Respiratory
                                                                                                                                                   Abby (18) who has Rett syndrome.
                                    Children,
                                  University
                                  Medicine     atofthe   where
                                                     OBawa,
                                                         Hospital      forshe
                                                                 followed           awas
                                                                            SickbyChildren     the
                                                                                       Paediatric
                                                                                              as       Chief
                                                                                                    residency
                                                                                                 a member       ofatthe
                                                                                                                     the                           Together, Karen and Abby have
     !                              Fellow.
                                  University
                                  Long   Term of    Since
                                                 Ven,la,on         thesubsequently
                                                     Toronto. program.
                                                                  She         completion    completed  of a Dr.
                                                                                                             Paediatric
                                                                                                                          !
                                                                                                                                                   been learning and teaching about
                                  Respirology
                                    Chiang’s       fellowship
                                                         studies,  at theshe  Hospital
                                                                                     hasfor worked
                                                                                              Sick Children,  atwhere                              communication, literacy and eye-
       Jackie                     she was the Chief Fellow. Since the comple,on of Dr. Chiang’s
               ChiangBloorview Kids
         Holland                          Rehabilitation                    Hospital          where
                                  studies, she has worked at Holland Bloorview Kids Rehabilita,on
                                                                                                           she                tracking
                                                                                                                            Karen        technology
                                                                                                                                    Congram          for almost five years.
         remains involved inHospital the respiratory
                                              where she remains        care        of in
                                                                            involved     children
                                                                                           the respiratorywith  care of
                                  Dr. James    Ellis completed PhD at theconditions.    University of Toronto,                                    Insert photo and text alphabetically by last name.
         neurodevelopmental              or with
                                  children     musculoskeletal
                                                      neurodevelopmental or musculoskeletalDr.                 condi,ons.
                                  developing retrovirus vectors for gene targe,ng. He established
         Chiang also recently           rejoined
                                  Dr. Chiang               the rejoined
                                                also recently         Division    theof     Respiratory
                                                                                        Division  of Respiratory
                                  his own research team at the Hospital for Sick Children in Toronto                                              Jennifer Facchinelli is widely known as ‘Ava’s mom’. She
         Medicine at the Hospital Medicinefor  at the     Hospital for Sick Children          as a memberof      of the
                                  in 1994 with      aSick
                                                       focus Children
                                                              on gene therapy      as fora member
                                                                                            Sickle Cell Anemia.                                   has presented and shared her experiences with Rett
! the Long Term Ventilation       Long   Term    Ven,la,on        program.                                                                        syndrome and communication for Easter Seals, Holland
                                  There, theprogram.
                                                team worked to find a means to manipulate stem cells
                                  for molecular medicine. The Ellis team developed MECP2 vectors                                                  Bloorview, Tobii Dynavox, and Today’s Parent. According to
 Jackie Chiang                                                                                                                                    Ava, she is really embarrassing.
                                  for gene therapy of ReB syndrome. They also developed and
                                  currently use pa,ent induced Pluripotent Stem (iPS) cells to
                                    DR.
                                  Dr.
                                  modelJamesJAMES
                                           ReB Ellis
                                                  syndrome.   ELLIS,
                                                       completed         PhD completed
                                                                  In addi,on,  at the   University
                                                                                     they  performPhD of Toronto,
                                                                                                      drug    at on
                                                                                                            screens                                DR.
                                                                                                                                                  Dr.        JAMES
                                                                                                                                                      James Eubanks,    PhD, isEUBANKS,
                                                                                                                                                                                a Senior Scien,st and   the Head
                                                                                                                                                                                                     PhD,       is of the
                                  developing
                                  pa,ent          retrovirus
                                            iPS cell    derivedvectors     tofor
                                                                    cellsToronto,  genetheir
                                                                               exploit    targe,ng.    He established
                                                                                                poten,al    to discover                           Gene,cs and Development Division at the Krembil Research
                                    the University                of                        developing                                             a Senior Scientist and the Head of
       !                          his own research
                                  personalized             team at the Hospital for Sick Children in Toronto
                                                    medicines.                                                                                    Ins,tute in Toronto. The Eubanks lab ini,ally started inves,ga,ng
                                  inretrovirus
                                     1994 with a focus   vectors
                                                               on genefor          gene
                                                                             therapy           targeting.
                                                                                         for Sickle  Cell Anemia. !                                the asGenetics
                                                                                                                                                  MeCP2                         and Development
                                                                                                                                                             one poten,al neuromodula,ng        factor in the study of
         James Ellis                He
                                  There,  established
                                           the   team     worked    histo  own
                                                                           find   a    research
                                                                                    means    to        team
                                                                                                manipulate      stem    cells                      Division
                                                                                                                                                  stroke  and      at
                                                                                                                                                              epilepsy.   the
                                                                                                                                                                         When      Krembil
                                                                                                                                                                                muta,ons   of theResearch
                                                                                                                                                                                                  MeCP2 gene were
                                    atmolecular
                                  for     the Hospitalmedicine. The       forEllisSick      Children
                                                                                   team developed        MECP2 in vectors   Jennifer Facchinelli   Institute
                                                                                                                                                  iden,fied        in Toronto.
                                                                                                                                                             as primary              When
                                                                                                                                                                          causes of ReB  syndromemutations
                                                                                                                                                                                                     in 1999, their focus
                                    Toronto
                                  for  gene therapy  in 1994          with a focus
                                                           of ReB syndrome.            They alsoon     geneand
                                                                                                   developed                                      changed
                                                                                                                                                   of the   towards
                                                                                                                                                                MeCP2 beBer understanding
                                                                                                                                                                              gene were      normal   func,on of
                                                                                                                                                                                                 identified
                                  currently   use for pa,ent    induced       Pluripotent     Stem (iPS)    cells to                              MeCP2 in the brain. Data from the Eubanks lab shows that the
                                    therapy                 Sickle         Cell      Anemia.          There,                                       as primary causes of Rett syndrome
                                  model ReB syndrome. In addi,on, they perform drug screens on                                                    reintroduc,on of normal MeCP2 throughout the brain of MeCP2-
                                    the team worked to find a means to
                                  pa,ent iPS cell derived cells to exploit their poten,al to discover
                                                                                                                                                   in 1999,
                                                                                                                                                  deficient  mice,the    Eubanks
                                                                                                                                                                   or into            lab of
                                                                                                                                                                           specific regions  hadtheir already
                                                                                                                                                                                                     brain, can improve
 !
                                    manipulate
                                  personalized                stem cells for molecular
                                                     medicines.                                                                                    been
                                                                                                                                                  many        investigating
                                                                                                                                                         aspects  of their ReB-like  MeCP2.
                                                                                                                                                                                    condi,on.  The  They’ve
                                                                                                                                                                                                    team  is currently
                                                                                                                            !
                                    medicine. The Ellis team developed                                                                             shownpoten,al
                                                                                                                                                  exploring      thatgene,cthemodifica,on
                                                                                                                                                                                    reintroduction            of
                                                                                                                                                                                              and pharmacological
   James MECP2 Ellis vectors for gene therapy of Rett syndrome. They also                                                     normal
                                                                                                                              James               therapies for the
                                                                                                                                        MeCP2 throughout
                                                                                                                                    Eubanks                     the treatment
                                                                                                                                                                        brain of ofReB   syndrome.
                                                                                                                                                                                     MeCP2-deficient
    developed and currently use patient induced Pluripotent                                                    mice, or into specific regions of their brain, can improve

                                                                                                                                                                                                    6
    Stem (iPS) cells to model Rett syndrome. In addition, they                                                 many aspects of Dr. their
                                                                                                                                     David Rett-like
                                                                                                                                            Grynspan, MD,  condition.         The
                                                                                                                                                             is a Paediatric Pathologist at the
    perform drug screens on patient iPS cell derived cells to                                                  team is currently Children’s
                                                                                                                                    exploringHospitalpotential
                                                                                                                                                       of Eastern Ontario  where he has been
                                                                                                                                                                      genetic
                                                                                                                                  conduc,ng research on the enteric nervous system since 2009.
    exploit their potential to discover personalized medicines.                                                modification and pharmacological                therapies for
                                                                                                                                  His interest in the neurological basis of intes,nal dysfunc,on in
                                                                                                               the treatment of Rett
                                                                                                                                  ReBsyndrome.
                                                                                                                                       syndrome was sparked by clinical observa,ons made by Dr.
                                                                                                                                            Peter Humphreys who is a role model and mentor. He is also
                                                                                                                                            fortunate to have been mentored in neuroscience by Professor
                                                                                                                                            William Staines at the University of OBawa, with whom he
                                                                                                                                            formed a collabora,ve team that was the first to show expression
                                                                                                                                            of the MeCP2 gene in intes,nal neurons. In 2017, Dr. Grynspan
Believe In Tomorrow ONTARIO RETT SYNDROME ASSOCIATION 2018 CONFERENCE
Insert photo and text alphabetically by last name.
                                                                                                                                        Dr. James Eubanks, PhD, is a Senior Scien,st and the Head of the

            7 SPEAKER
                                Karen Congram is a Learning for All Coach who works with
                                teachers to design for inclusive education. She serves on                                               Gene,cs and Development Division at the Krembil Research
                                the Board of Directors for the Ontario Rett Syndrome                                                    Ins,tute in Toronto. The Eubanks lab ini,ally started inves,ga,ng
                                Association. She is a mother of three, including Abby (18)                                              MeCP2 as one poten,al neuromodula,ng factor in the study of
                                who has Rett syndrome. Together, Karen and Abby have                                                    stroke and epilepsy. When muta,ons of the MeCP2 gene were
                                been learning and teaching about communication, literacy                                                iden,fied as primary causes of ReB syndrome in 1999, their focus
                                and eye-tracking technology for almost five years.                                                      changed towards beBer understanding normal func,on of
                                                                                                                                        MeCP2 in the brain. Data from the Eubanks lab shows that the
                                                                                                                                        reintroduc,on of normal MeCP2 throughout the brain of MeCP2-
                                                                                                                                        deficient mice, or into specific regions of their brain, can improve
!                                                                                                       !                               many aspects of their ReB-like condi,on. The team is currently
                                                                                                                                        exploring poten,al gene,c modifica,on and pharmacological
Karen Congram                                                                                           James Eubanks                   therapies for the treatment of ReB syndrome.

                                Insert photo and text alphabetically by last name.
                                 JENNIFER FACCHINELLi, 		                                                                 DR.
                                                                                                                        Dr. DavidDAVID
                                                                                                                                    Grynspan, MD,  GRYNSPAN,
                                                                                                                                                      is a Paediatric Pathologist
                                                                                                                                                                             MD, atisthe  a
                                Jennifer Facchinelli  is widelyas
                                                                known   as ‘Ava’s mom’. She                             Children’s Hospital of Eastern Ontario where he has been
                                 is widely        known             ‘Ava’s     mom’.                                      Paediatric Pathologist at the Children’s
                                has presented and shared her experiences with Rett                                      conduc,ng research on the enteric nervous system since 2009.
                                 She has
                                syndrome    andpresented
                                                communicationand         shared
                                                                  for Easter        her
                                                                             Seals, Holland
                                                                                                                          Hospital
                                                                                                                        His  interest in of   Eastern Ontario
                                                                                                                                          the neurological                 where
                                                                                                                                                             basis of intes,nal        he in
                                                                                                                                                                                  dysfunc,on
                                 experiences
                                Bloorview,              withand Rett
                                            Tobii Dynavox,                 syndrome
                                                                 Today’s Parent.  According to                            has
                                                                                                                        ReB      beenwas
                                                                                                                              syndrome      conducting           research
                                                                                                                                               sparked by clinical   observa,ons onmade
                                                                                                                                                                                      the by Dr.
                                Ava,
                                 and shecommunication
                                          is really embarrassing. for Easter Seals,                                       enteric
                                                                                                                        Peter           nervous
                                                                                                                                Humphreys     who is asystem
                                                                                                                                                        role model since     2009.
                                                                                                                                                                     and mentor.    HeHis
                                                                                                                                                                                        is also
                                 Holland Bloorview, Tobii Dynavox, and                                                  fortunate
                                                                                                                          interest   to have
                                                                                                                                         in been
                                                                                                                                              the mentored       in neuroscience
                                                                                                                                                      neurological           basis  by Professor
                                                                                                                                                                                         of
                                                                                                                        William Staines at the University of OBawa, with whom he
                                 Today’s Parent. According to Ava, she                                                    intestinal
                                                                                                                         Dr. Monica
                                                                                                                                           dysfunction
                                                                                                                                       Jus,ce, PhD,   is the
                                                                                                                                                               in Rett
                                                                                                                                                             Head
                                                                                                                                                                           syndrome
                                                                                                                        formed    a collabora,ve    team   that wasand
                                                                                                                                                                     theafirst
                                                                                                                                                                           Senior  Scien,st
                                                                                                                                                                               to show        in the
                                                                                                                                                                                         expression
                                 is really embarrassing.                                                                ofwas
                                                                                                                         Gene,cs  sparked
                                                                                                                           the MeCP2& Genome       by
                                                                                                                                          gene inBiology clinical
                                                                                                                                                           program
                                                                                                                                                   intes,nal          observations
                                                                                                                                                                     at
                                                                                                                                                              neurons.   The Hospital
                                                                                                                                                                         In 2017,       for Sick
                                                                                                                                                                                   Dr. Grynspan
!                                                                                               !
                                                                                                                          made
                                                                                                                         Children
                                                                                                                        was   awarded  bya $100,000
                                                                                                                                            Dr.inPeter
                                                                                                                                    (SickKids)     Toronto. Humphreys
                                                                                                                                                             Shegrant
                                                                                                                                                       research   recently    thewho
                                                                                                                                                                        frommoved         is ReB
                                                                                                                                                                                     to this
                                                                                                                                                                                   Ontario
                                                                                                                          a rolefrom
                                                                                                                         posi,on
                                                                                                                        Syndrome       model        and ofmentor.
                                                                                                                                          Baylor College
                                                                                                                                      Associa,on.                          He is also
                                                                                                                                                              Medicine, Houston,      Texas, where
Jennifer Facchinelli                                                                                    Grynspanto have she
                                                                                                  fortunate
                                                                                                  David                   beenwas a Professor
                                                                                                                                      mentored   in the Department     of Molecular and
                                                                                                                                                         in neuroscience                by Human
                                                                                                                         Gene,cs and Director of the Mouse Embryonic Stem Cell Core
                                                                                                  Professor William Staines at the University of Ottawa, with
                                                                                                                         and the BaSH Consor,um for the Produc,on and Broad-based
                                                                                                  whom he formed a Phenotyping
                                                                                                                         collaborative            team
                                                                                                                                         of Knockout        that
                                                                                                                                                        Mice.       was
                                                                                                                                                               Jus,ce      the her
                                                                                                                                                                       received   firstPhD
                                                                                                                                                                                         to from
                                Dr. Monica Jus,ce, PhD, is the Head and a Senior Scien,st in the  show    expression of  the
                                                                                                                         Kansas  MeCP2
                                                                                                                                  State       gene
                                                                                                                                         University  in  in
                                                                                                                                                        mouseintestinal      neurons.
                                                                                                                                                                 developmental     gene,cs    and
                                Gene,cs & Genome Biology program at The Hospital for Sick In 2017, Dr. Grynspan          was was       awarded
                                                                                                                               a postdoctoral   fellow inathe$100,000
                                                                                                                                                                Mammalianresearch
                                                                                                                                                                              Gene,cs Laboratory
                                Children (SickKids) in Toronto. She recently moved to this        grant
                                                                                                  !                      at theRett
                                                                                                          from the Ontario       Na,onal    Cancer Ins,tute.
                                                                                                                                        Syndrome          Association.
                             posi,on from Baylor College of Medicine, Houston, Texas, where
                             she was a Professor in the Department of Molecular and HumanMonica Jus,ce
                             Gene,cs and Director of the Mouse Embryonic Stem Cell Core
                              DR.
                             and
                             Dr. MonicaMONICA
                                  the BaSH  Jus,ce,   PhD, isJUSTICE,
                                                Consor,um         for
                                                                  thetheHead    and aPhD,
                                                                            Produc,on              is the in the
                                                                                            and Scien,st
                                                                                        Senior     Broad-based                                DR.
                                                                                                                                             Dr.  DavidDAVID         KATZ, ofPhD
                                                                                                                                                        Katz, PhD is Professor             is Professor
                                                                                                                                                                                    Neurosciences    and Psychiatry
                             Phenotyping
                             Gene,cs
                              Head& and       of Knockout
                                            Genome     aBiology Mice.
                                                             Senior       Jus,ce
                                                                     program     atreceived      her PhD
                                                                                      The Hospital
                                                                              Scientist          in           from
                                                                                                         for Sick
                                                                                                       the                                   atofCaseNeurosciences
                                                                                                                                                      Western Reserve University      SchoolPsychiatry
                                                                                                                                                                                              of Medicine in
                                                                                                                                                                                 and
                             Kansas
                             ChildrenState    University
                                        (SickKids)           in mouse
                                                      in Toronto.       Shedevelopmental
                                                                              recently movedgene,cs  to this and                             Cleveland, Ohio. The Katz lab is involved in efforts to develop and
                              Genetics
                             was  a postdoctoral
                             posi,on
                                                 & Genome
                                        from BaylorfellowCollege in the
                                                                           Biology
                                                                           Mammalian
                                                                     of Medicine,
                                                                                          program
                                                                                           Gene,cs
                                                                                        Houston,          Laboratory
                                                                                                      Texas,    where
                                                                                                                                              at Case Western Reserve University
                                                                                                                                             evaluate poten,al ReB syndrome (RTT) therapeu,cs in mouse
!                             at
                             at
                             shethe
                                  was The
                                     Na,onal     Hospital
                                                 Cancer
                                        a Professor         Ins,tute.
                                                        in the         for      Sick       Children
                                                                  Department of Molecular and Human                                           School
                                                                                                                                             models,   with of    Medicine
                                                                                                                                                             a par,cular             in Cleveland,
                                                                                                                                                                         focus on molecules     targe,ng the BDNF/
                              (SickKids)
                             Gene,cs                in of
                                         and Director      Toronto.              She recently
                                                               the Mouse Embryonic             Stem Cell Core                                 Ohio.
                                                                                                                                             TrkB       Thepathway,
                                                                                                                                                   signaling   Katz lab     is involved
                                                                                                                                                                       as well  as glutamate in   efforts
                                                                                                                                                                                               signaling  through
  Monica Jus,ce               moved
                             and  the BaSH to         this position
                                                Consor,um         for the Produc,on fromandBaylor  Broad-based                                to NMDA
                                                                                                                                             the    develop
                                                                                                                                                          receptor.and
                                                                                                                                                                    Results evaluate
                                                                                                                                                                            from the NMDApotential
                                                                                                                                                                                               program have
                             Phenotyping
                              College ofofKnockout   Medicine,  Mice. Jus,ce        received her
                                                                              Houston,                PhD from
                                                                                                  Texas,                                     recently  translated into a(RTT)
                                                                                                                                              Rett syndrome              clinical trial of low-dose ketamine
                                                                                                                                                                                   therapeutics           in in
                             Kansas
                             Dr. DavidState
                                         Katz,University
                                                 PhD   is    in mouse
                                                          Professor      of developmental
                                                                             Neurosciences        gene,cs
                                                                                                   and         and
                                                                                                          Psychiatry                         RTT pa,ents. In addi,on to his academic work, David is co-
                              where
                             was
                                             she
                                  a postdoctoral
                                                        was         a
                                                       fellowUniversity
                                                                           Professor
                                                                 in the Mammalian
                                                                                                in     the                                    mouse       models,      with    a   particular       focus
                             at Case   Western Reserve                         School ofGene,cs
                                                                                             MedicineLaboratory
                                                                                                            in                               founder of ArRETT Neurosciences, a startup created to advance
    !                        atDepartment
                                the Na,onal
                             Cleveland,    Ohio.Cancer
                                                        ofIns,tute.
                                                   The Katz
                                                              Molecular              and Human
                                                                 lab is involved in efforts to develop and            !                        on molecules
                                                                                                                                             treatments                 targeting
                                                                                                                                                           for RTT and related             the BDNF/
                                                                                                                                                                                neurodevelopmental       disorders.
                              Genetics
                             evaluate   poten,al  and        Director(RTT)
                                                     ReB syndrome               oftherapeu,cs
                                                                                       the Mouse        in mouse                              TrkB signaling pathway, as well as
        Embryonic
                Jus,ce Stem Cell     Core         and the                                                              David Katz
      Monica                 models,   with a par,cular         focus BaSH
                                                                         on molecules Consortium
                                                                                            targe,ng the BDNF/       glutamate      signaling through the NMDA receptor. Results
        for the Production and Broad-based Phenotyping of
                             TrkB  signaling    pathway,     as   well   as  glutamate     signaling      through    from the NMDA program   Jane Lane,have
                                                                                                                                                          BSN, RNrecently
                                                                                                                                                                   has 25 years’translated
                                                                                                                                                                                  experience as aintoresearch
                                                                                                                                                                                                           a
                             the  NMDA
                             Dr. David
        Knockout Mice. Justice             receptor.
                                         Katz,
                                         receivedPhD isResults herfrom
                                                          Professor       ofthe
                                                                         PhD     NMDA
                                                                                   fromprogram
                                                                              Neurosciences               have
                                                                                                   and Psychiatry
                                                                                               Kansas                                        manager in child neurology at the Civitan Interna,onal Research
                                                                                                                     clinical trial of low-dose    ketamine in RTT patients. In addition
                             recently   translated
                             at Case Western           into a University
                                                   Reserve      clinical trialSchool
                                                                                 of low-dose       ketamine
                                                                                         of Medicine        in in                            Center at the University of Alabama at Birmingham, the last 12
        State University in RTT
                              mouse
                                  pa,ents.
                                             developmental
                                               In addi,on
                                                                                 genetics             and            to his academic work,              David is co-founder of ArRETT
                                                                                                                                             years devoted exclusively to ReB syndrome. She is the Project
                             Cleveland,    Ohio.   The Katztolab    hisisacademic
                                                                          involved in  work,
                                                                                         effortsDavid     is co- and
                                                                                                    to develop
        was a postdoctoral       fellow
                             founder
                             evaluate   of     in the
                                           ArRETT
                                         poten,al              Mammalian
                                                      Neurosciences,
                                                     ReB     syndrome         a startup
                                                                             (RTT)        Genetics
                                                                                          created to
                                                                                     therapeu,cs            mouse Neurosciences, a startup
                                                                                                        in advance                           Managercreated          to advance
                                                                                                                                                        for the ReB Syndrome                treatments
                                                                                                                                                                                 and ReB-related    Disorders
  !Laboratory at the Nationaltreatments
                             models, with   Cancer
                                            fora RTT
                                                 par,cular    Institute.
                                                       and related
                                                                focus on neurodevelopmental
                                                                              molecules targe,ng        disorders.
                                                                                                           the BDNF/ for RTT and related neurodevelopmental
                                                                                                                                             Consor,um as part of the NIH-funded disorders.
                                                                                                                                                                                         Rare Diseases Network,
                             TrkB signaling pathway, as well as glutamate signaling through                                                  which works to define the natural history of these disorders. She
  David Katz
                             the NMDA receptor. Results from the NMDA program have                                                           has co-authored over 25 publica,ons, almost all pertaining to
                             Jane  Lane,
                             recently      BSN, RN into
                                        translated      has 25     years’ trial
                                                              a clinical    experience     as a research
                                                                                 of low-dose       ketamine in                               ReB syndrome.
                              JANE
                             manager
                             RTT  pa,ents.   LANE,
                                         in child  neurology
                                               In addi,on    BSN,   at the
                                                               to his     RNCivitan
                                                                         academichaswork, 25 Davidyears’
                                                                                       Interna,onal      is Research
                                                                                                            co-                               SHERRY LAWRENCE, for several
                             Center
                             founder  atofthe
                              experience       University
                                           ArRETT       as ofaAlabama
                                                      Neurosciences, research a at Birmingham,
                                                                                startup   created the
                                                                                         manager             last 12
                                                                                                       to advance                             years, has been an active member
                             years
      !
                              in devoted
                             treatments
                                     child  forexclusively
                                                 RTT and related
                                                  neurology      to ReBneurodevelopmental
                                                                            syndrome. She is thedisorders.
                                                                             at the Civitan                Project !
                                                                                                                                              of her community in Paris, Ontario,
                             Manager for the ReB Syndrome and ReB-related Disorders
        David Katz            International               Research              Center
                             Consor,um as part of the NIH-funded Rare Diseases Network,          at    the             Jane Lane              volunteering on the Accessibility
                              University
                             which
                             Jane    works
                                   Lane,   BSN,   of
                                                  RN Alabama
                                              to define  hasthe
                                                             25 natural       at Birmingham,
                                                                             history
                                                                   years’ experience   of these     disorders. She
                                                                                           as a research                                      Committee for the County of Brant
                              the
                             has
                             manager  last
                                  co-authored  12over
                                         in child    years          devoted
                                                          25 publica,ons,
                                                   neurology        at the Civitanalmostexclusively
                                                                                             all pertaining
                                                                                       Interna,onal              to
                                                                                                            Research                          and working as a Fitness Instructor.
                             ReB
                              to syndrome.
                             Center   at thesyndrome.
                                    Rett       University of Alabama    She atisBirmingham,
                                                                                      the Project      the last 12                            Sherry has been volunteering with the
                             years devoted exclusively to ReB syndrome. She is the Project
                              Manager for the Rett Syndrome and                                                                               Ontario Rett Syndrome Association
                             Manager for the ReB Syndrome and ReB-related Disorders
  !
                              Rett-related
                             Consor,um       as part ofDisorders
                                                           the NIH-funded      Consortium
                                                                                   Rare Diseases Network, as                                  for over 19 years. She and her family
                              partworks
                             which     of the        NIH-funded
                                              to define     the natural history   Rare      Diseases
                                                                                       of these     disorders. She                            have coordinated the Run4Rett since
    JaneNetwork,
             Lane    which works  to defineover
                             has co-authored         the25natural
                                                               publica,ons,    history
                                                                                   almost of       these to 2012. Sherry and David have three adult children. Olivia
                                                                                             all pertaining
        disorders. She hasReBco-authored
                                   syndrome.                  over 25 publications,                                  is 27 years old and has Rett syndrome. Olivia resides at
        almost all pertaining to Rett syndrome.                                                             home and is supported by her parents and her network of
    !
                                                                                                            excellent staff, who are funded by Paramed Home Care
                                                                                                            Program and MCSS Passport Program. Olivia lives a very
    Jane Lane                                                                                               engaged and fulfilling lifestyle.
Believe In Tomorrow ONTARIO RETT SYNDROME ASSOCIATION 2018 CONFERENCE
!                                  Paramed Home Care Program and MCSS Passport Program.
                                                                                                                                                   Olivia lives a very engaged and fulfilling lifestyle.
                                                                                                                Sherry Lawrence

                                                                                                                                                   Dr. Jason Lerch, PhD, is a Senior Scien,st at the Mouse Imaging
                                                                                                                                                   Centre (MICe) of the Hospital for Sick Children and an Associate

BIOGRAPHIES
                                                                                                                                                   Professor in Medical Biophysics at the University of Toronto. Prior
                                   For several years, Sherry Lawrence has been an active member                                                    to MICe, he completed his Ph.D. in 2005 in the Department of
                                   of her community in Paris, Ontario, volunteering on the                                                         Neurology and Neurosurgery at McGill University. His Ph.D.
                                   Accessibility Committee for the County of Brant and working as a
                                   Fitness Instructor. Sherry has been volunteering with the Ontario                                               research was on in-vivo measurements of cor,cal thickness from
                                   Rett Syndrome Association for over 19 years. She and her family                                                 MRI. Currently, his research focus is on detec,ng
                                   have coordinated the Run4Rett since 2012. Sherry and David                                                      neuroanatomical changes due to behavioural and gene,c
                                   have three adult children. Olivia is 27 years old and has Rett                                                  manipula,ons in ,ghtly controlled mouse models, primarily
                                   syndrome. Olivia resides at home and is supported by her
                                   parents and her network of excellent staff, who are funded by                                                   related to neurodevelopmental disorders, and to relate these
!                                  Paramed Home Care Program and MCSS Passport Program. !                                                          findings to human subjects.
                                   Olivia lives a very engaged and fulfilling lifestyle.
Sherry Lawrence                                                                                                 Jason Lerch

                                    DR.
                                   Dr. JasonJASON
                                             Lerch, PhD, LERCH,
                                                           is a Senior Scien,st
                                                                          PhD,atisthe
                                                                                    a Mouse
                                                                                       SeniorImaging                                               DR.
                                                                                                                                                  Dr.        PATRICK
                                                                                                                                                       Patrick   MacLeod, MD,      MACLEOD,
                                                                                                                                                                                      is a Pediatrician and   MD, Medical
                                                                                                                                                                                                                      is aGene,cist
                                   Centre (MICe) of the Hospital for Sick Children and an Associate                                               and    a member of the        Vancouver       Island Medical     Gene,cs Program
                                    Scientist at the Mouse Imaging Centre                                                                          Pediatrician               and       Medical            Geneticist
                                   Professor in Medical Biophysics at the University of Toronto. Prior                                            based in Victoria B.C. He is a Clinical Professor in the Department
                                    (MICe)
                                   to MICe, heof    the Hospital
                                                completed                for
                                                              his Ph.D. in   Sick
                                                                           2005     Children
                                                                                in the Department of                                               and a member of the Vancouver
                                                                                                                                                  of Medical Gene,cs University of Bri,sh Columbia and an
                                    and anand
                                   Neurology    Associate
                                                    Neurosurgery  Professor      in Medical
                                                                     at McGill University. His Ph.D.                                               IslandClinical
                                                                                                                                                  Adjunct          Medical
                                                                                                                                                                         Professor atGenetics                ProgramResearch
                                                                                                                                                                                          the Centre for Biomedical
                                    Biophysics
                                   research  was on at    themeasurements
                                                     in-vivo     Universityofof      Toronto.
                                                                                  cor,cal  thickness from                                          based
                                                                                                                                                  at             in Victoria
                                                                                                                                                      the University      of Victoria.B.C.        He is has
                                                                                                                                                                                          Dr. MacLeod       a Clinical
                                                                                                                                                                                                                been involved in
                                   MRI.
                                    PriorCurrently,
                                           to MICe, his research   focus is on detec,ng
                                                         he completed             his Ph.D. in                                                     Professor
                                                                                                                                                  various    aspects ofinReB the  Syndrome    Department                 of
                                                                                                                                                                                                  Clinical Research beginning      in
                                   neuroanatomical changes due to behavioural and gene,c                                                          1985.
                                                                                                                                                   Medical He is currently
                                                                                                                                                                      Genetics  a member       of the Scien,fic
                                                                                                                                                                                          University         of    Advisory
                                                                                                                                                                                                                   British
                                    2005 in the Department of Neurology                                                                           Dr.  Caroline ofMusselwhite,
                                   manipula,ons in ,ghtly controlled mouse models, primarily                                                      CommiBee            the OntarioPhD,  ReB is   an assis,ve
                                                                                                                                                                                             Syndrome          technology
                                                                                                                                                                                                           Associa,on.
                                    and Neurosurgery at McGill University.                                                                         Columbia
                                                                                                                                                  specialist   with more  and than 40an       Adjunct
                                                                                                                                                                                          years   of experience Clinical
                                                                                                                                                                                                                   working with
                                   related to neurodevelopmental disorders, and to relate these
                                    His Ph.D.
                                   findings  to humanresearch
                                                        subjects.       was on in-vivo                                                             Professor
                                                                                                                                                  children            at the Centre
                                                                                                                                                              and adolescents                      for Biomedical
                                                                                                                                                                                     with significant      disabili,es in a variety
  !                                                                                                     !
                                 measurements of cortical thickness                                                                               ofResearch
                                                                                                                                                     seAngs, including  at the HeadUniversity             of Victoria.day
                                                                                                                                                                                       Start, clinics, developmental
    Jason fromLerch
                  MRI. Currently, his research focus is on detecting                                                 Dr. MacLeod                  programs,involved
                                                                                                                                            has been            homes, and the    in public
                                                                                                                                                                                         variousschools.aspects
                                                                                                                                                                                                           Dr. Musselwhite
                                                                                                                                                                                                                         of has
                                                                                                                 Patrick        MacLeod
                                                                                                                                                  wriBen a number of textbooks and “how-to” books on a range of
          neuroanatomical changes due to behavioural and                                                             Rett Syndrome Clinical Research beginning in 1985. He is
                                                                                                                                                  topics, and has also authored many books and sopware programs
          genetic manipulations       in tightly
                                Dr. Patrick  MacLeod, controlled           mouse
                                                          MD, is a Pediatrician      andmodels,
                                                                                          Medical Gene,cist          currently
                                                                                                                     !               a memberforof         thewith
                                                                                                                                                       youth      Scientific
                                                                                                                                                                      disabili,es. Advisory
                                                                                                                                                                                       She has presented Committee
                                                                                                                                                                                                               thousands of
                                and a member of the Vancouverdisorders,
          primarily related to neurodevelopmental                        Island Medicaland  Gene,cs  to Program      of the Ontario Rett Syndrome workshops throughout Association.
                                                                                                                                                                                  North and South America, Australia,
                                based in Victoria B.C. He is a Clinical Professor in the Department                    Caroline Musselwhite
          relate these findingsofto   human subjects.
                                   Medical Gene,cs University of Bri,sh Columbia and an
                                                                                                                                                  Europe, and Africa, and is a founding member and Fellow of the
                                                                                                                                                  Interna,onal Society for Augmenta,ve and Alterna,ve
                                Adjunct Clinical Professor at the Centre for Biomedical Research                                                  Communica,on.
                                at the University of Victoria. Dr. MacLeod has been involved in
                                various aspects of ReB Syndrome Clinical Research beginning in
                                1985. He is currently a member of the Scien,fic Advisory                                                           Dr. Jeffrey Neul, MD, PhD is the Director of the Vanderbilt
                                 DR.        CAROLINE                    MUSSELWHITE,
                                CommiBee of the Ontario ReB Syndrome Associa,on.                                                                   DR. JEFFREY
                                                                                                                                                  Kennedy      Center and theNEUL,  AnneBe SchafferMD, PhD  Eskind is   the
                                                                                                                                                                                                                   Chair  of
                                 PhD, is an assistive technology                                                                                  Pediatrics.
                                                                                                                                                   Director     Duringof clinical
                                                                                                                                                                             the training
                                                                                                                                                                                      Vanderbilt at Baylor College
                                                                                                                                                                                                             Kennedy  of Medicine,
                                                                                                                                                  Houston, TX, he nurtured a long-standing interest in
    !                            specialist with more than 40 years of
                               Dr. Caroline Musselwhite, PhD, is an assis,ve technology
                                                                                                                                                   Center and the Annette Schaffer
                                                                                                                                                  neurodevelopmental disorders and became interested in ReB
                                 experience            working         with    children
                               specialist with more than 40 years of experience working with     and                                               Eskind (RTT),
                                                                                                                                                  syndrome           Chair
                                                                                                                                                                         ul,matelyof    doing Pediatrics.               He in
                                                                                                                                                                                                 a post-doctoral fellowship
      Patrick MacLeod            adolescents            withwith significant         disabilities
                               children   and adolescents            significant disabili,es       in a variety                                     completed
                                                                                                                                                  the  laboratory of Dr.   a Huda
                                                                                                                                                                               post-doctoral
                                                                                                                                                                                       Zoghbi at Baylor.fellowship
                                                                                                                                                                                                             Aper Baylor, Dr. Neul
                               ofinseAngs,
                                     a variety
                                             includingofHead
                                                          settings,        including
                                                                 Start, clinics,             Head
                                                                                  developmental       day                                          in thethelaboratory
                                                                                                                                                  became           Division Chief ofof        Dr.Neurology
                                                                                                                                                                                          Child      Huda and    Zoghbi
                                                                                                                                                                                                                    Professor of
                               programs,                                                                                                         Dr.  Alan Percy, MD,       is aUniversity
                                                                                                                                                                                 pediatric neurologist
                                                                                                                                                                                                  California,atSan
                                                                                                                                                                                                                 theDiego
                                                                                                                                                                                                                     University   of
                                 Start, homes,clinics,and thedevelopmental
                                                                 public schools. Dr. Musselwhite day has                                          Neurosciences
                                                                                                                                                   at     Baylor       at the
                                                                                                                                                                        College           of  ofMedicine.           After   and Rady
                               wriBen a number of textbooks and “how-to” books on a range of                                                     Alabama
                                                                                                                                                  Children’satHospital
                                                                                                                                                                 Birmingham.        In 1983
                                                                                                                                                                            San Diego.     Hehe    was one
                                                                                                                                                                                                moved         of the firstUniversity
                                                                                                                                                                                                          to Vanderbilt
                                 programs, homes, and the public                                                                                   Baylor,toDr.
                                                                                                                                                 physicians               Neul became
                                                                                                                                                                    recognize                           thein Division
                               topics, and has also authored many books and sopware programs                                                      Medical Center        in 2017ReBwhere syndrome      (RTT)
                                                                                                                                                                                            he con,nues      histhe United
                                                                                                                                                                                                                  work        States
                                                                                                                                                                                                                        on clinical
      !                          schools.
                               for               Dr. Musselwhite
                                    youth with disabili,es.      She has presentedhasthousands
                                                                                           writtenof                   !
                                                                                                                                                   Chief
                                                                                                                                                 and
                                                                                                                                                  care, ac,velyof
                                                                                                                                                          clinical  Child
                                                                                                                                                                  pursued
                                                                                                                                                                    research,  Neurology
                                                                                                                                                                              clinical
                                                                                                                                                                                 and     and         and
                                                                                                                                                                                              laboratory
                                                                                                                                                                                       transla,onal/basic    Professor
                                                                                                                                                                                                            studies  in
                                                                                                                                                                                                                research RTT,
                                                                                                                                                                                                                           on  ReB
                                 a number
                               workshops             of textbooks
                                             throughout     North and South  and      “how-to”
                                                                                  America,     Australia,                                          of Neurosciences
                                                                                                                                                 establishing
                                                                                                                                                  syndrome        centers
                                                                                                                                                                and   relatedat Baylor   at    theofUniversity
                                                                                                                                                                                          College
                                                                                                                                                                                 disorders.                              of at the
                                                                                                                                                                                                        Medicine and later
        Caroline
          booksMusselwhite
                   on a range of   topics,
                               Europe,          andand
                                          and Africa,    has is aalso
                                                                  foundingauthored
                                                                             member andmany     Fellow of theCalifornia, Jeffrey Neul    San DiegoUniversity
                                                                                                                                                          andof RadyAlabama Children’s
                                                                                                                                                                                at Birmingham where          he is the
                                                                                                                                                                                                      Hospital        Sanprincipal
                               Interna,onal     Society  for  Augmenta,ve       and   Alterna,ve                                                 inves,gator of the ReB syndrome and ReB-related disorders Rare
          books and software programs for youth with disabilities. She                                               Diego. He moved to              Vanderbilt University Medical Center
                               Communica,on.                                                                                                     Disease Clinical Research Consor,um. He encouraged Dr. Huda
          has presented thousands of workshops throughout North                                                      in 2017 where he Zoghbi       continuesto pursue hisgene,c  work
                                                                                                                                                                                    studieson in RTT,clinical
                                                                                                                                                                                                        leading tocare,
                                                                                                                                                                                                                    iden,fica,on
          and South America, Australia, Europe, and Africa, and is a                                                 clinical research, and             translational/basic
                                                                                                                                                 of muta,ons        in MECP2. He has authored research    more onthanRett
                                                                                                                                                                                                                      120 scien,fic
                               Dr. Jeffrey Neul, MD, PhD is the Director of the Vanderbilt
          founding member and          Fellow       of   the     International
                               Kennedy Center and the AnneBe Schaffer Eskind Chair of      Society                    syndrome         and   related
                                                                                                                                                 papers, disorders.
                                                                                                                                                             chapters, and reviews on RTT. He remains commiBed to
          for Augmentative and        Alternative          Communication.                                        !                               finding meaningful approaches to effec,ve treatment for this
                               Pediatrics.   During clinical   training at Baylor College of Medicine,
                                                                                                                                                 unique neurodevelopmental disorder.
                               Houston, TX, he nurtured a long-standing interest in                                Alan Percy
                               neurodevelopmental disorders and became interested in ReB
                                Dr. Alan Percy,
                               syndrome     (RTT),MD,   is a pediatric
                                                    ul,mately     doing neurologist     at the
                                                                          a post-doctoral         University
                                                                                              fellowship     in of
                                 DR.
                                Alabama
                               the         atALAN
                                    laboratory    of Dr. HudaPERCY,
                                               Birmingham.      In 1983 at
                                                                 Zoghbi      wasMD,
                                                                          heBaylor. one  of the
                                                                                      Aper     is first
                                                                                             Baylor,  aDr. Neul                                    BRENDON
                                                                                                                                                 Brendon      Pooran is the POORAN,
                                                                                                                                                                                 principal lawyer      at PooranLaw.
                                                                                                                                                                                                    is the   principal
                                physiciansthetoDivision
                                                recognize     ReBof syndrome     (RTT)University
                                                                                        in the    United States                                  He is involved in all areas of the firm’s prac,ce and regularly
                                 pediatric
                               became              neurologist
                                                         Chief      Childat   the
                                                                           Neurology    and    Professor     of                                    lawyer at PooranLaw. He is involved
                                and                                                                                                              provides advice to individuals, families, organiza,ons and
                                 of ac,vely
                               Neurosciences
                                      Alabama  pursued    clinical
                                                  at the at
                                                          Universityandoflaboratory
                                                                Birmingham.California,studies
                                                                                        San
                                                                                         In Diego  in RTT,
                                                                                                1983   and Rady                                    in all areas
                                                                                                                                                 government        in the areas ofof thewills & firm’s       practice
                                                                                                                                                                                                 estates planning,    disability
                               Children’s
                                establishingHospital
                                               centers San
                                                         at Diego.
                                                            Baylor He    moved
                                                                      College  of to  Vanderbilt
                                                                                   Medicine      andUniversity
                                                                                                       later at the
                                 he
                               Medical
                                       was
                                UniversityCenter
                                                one      of
                                                   in 2017 at
                                             of Alabama
                                                               the
                                                            where
                                                                       first  physicians
                                                                      he con,nues
                                                                Birmingham      where hishework
                                                                                             is the
                                                                                                     to
                                                                                                   onprincipal
                                                                                                        clinical
                                                                                                                                                   and
                                                                                                                                                 law,   and    regularly
                                                                                                                                                              corporate    law   for provides
                                                                                                                                                                                      not-for-profit       advice
                                                                                                                                                                                                         and charitable  to
        !                        recognize
                               care,                 Rett
                                      clinical research,
                                inves,gator    of the  ReBand syndrome            (RTT)research
                                                                 transla,onal/basic
                                                             syndrome      and ReB-related  in disorders
                                                                                                  the on ReBRare                                   individuals,
                                                                                                                                                 organiza,ons.       As well families,
                                                                                                                                                                                as being a lawyer,   organizations
                                                                                                                                                                                                        Brendon teaches Cri,cal
                                 United
                               syndrome
                                Disease     andStates
                                                 related
                                          Clinical          and
                                                           disorders.
                                                    Research           actively
                                                                Consor,um.              pursued
                                                                                He encouraged         Dr. Huda                                   Disability    Law at York University,
                                                                                                                                                   and government                       in theis theareas
                                                                                                                                                                                                      Past-President    of
                                                                                                                                                                                                                  of wills
          Jeffrey Neul                                                                                                                            Community Living York South and is a founding director of Plan
                                 clinical
                                Zoghbi         andgene,c
                                         to pursue      laboratory           studies
                                                                studies in RTT,    leadingin      RTT.
                                                                                             to iden,fica,on                                        & estates planning, disability law,
                                of muta,ons     in MECP2.     He has authored       more than 120                                                Toronto (now Partners for Planning). He is also a lawyer member
                                 He      is the        principal           investigator              of scien,fic                                 onand        corporate
                                                                                                                                                      the Ontario     Consent and    law       for Board
                                                                                                                                                                                        Capacity       not-for-profit
                                                                                                                                                                                                            and provides
                                papers, chapters, and reviews on RTT. He remains commiBed to
                                 the Rett syndrome and Rett-related                                                !
                                                                                                                                                   and charitable
                                                                                                                                                 performance        management     organizations.
                                                                                                                                                                                       solu,ons     to          As well
                                                                                                                                                                                                       organiza,ons     in the
!                               finding meaningful approaches to effec,ve treatment for this
                                 disorders             Rare
                                unique neurodevelopmental disorder.  Disease             Clinical                                                  as
                                                                                                                                                 human    being
                                                                                                                                                            services   a    lawyer,
                                                                                                                                                                        arena.              Brendon           teaches
  Alan    Research
               Percy  Consortium. He encouraged Dr. Huda Zoghbi                                                      CriticalPooran
                                                                                                                     Brendon       Disability Law at York University, is the Past-President

                                                                                                                                                                                                            8
    to pursue genetic studies in RTT, leading to identification                                    of Community Living York South and is a founding director
    of mutations in MECP2
                       Brendonin Pooran
                                 1999.isHe      remains
                                            the principal    committed
                                                          lawyer  at PooranLaw.to                  of Plan Toronto (now Partners for Planning). He is
    finding meaningful approaches
                       He is involved in allto  effective
                                             areas of the firm’streatment      for
                                                                 prac,ce and regularly             also a lawyer member on the Ontario Consent
                       provides advice to individuals,
    this unique neurodevelopmental           disorder.  families, organiza,ons and                 and Capacity Board and provides performance
                                   government in the areas of wills & estates planning, disability
                                                                                                   management solutions to organizations in the
                                   law, and corporate law for not-for-profit and charitable
                                   organiza,ons. As well as being a lawyer, Brendon teaches Cri,calhuman services arena.
                                   Disability Law at York University, is the Past-President of
                                   Community Living York South and is a founding director of Plan
                                   Toronto (now Partners for Planning). He is also a lawyer member
                                   on the Ontario Consent and Capacity Board and provides
Believe In Tomorrow ONTARIO RETT SYNDROME ASSOCIATION 2018 CONFERENCE
S P EA K E R
            9
                                                                                                                          Hassnane Sajan is the CEO at Darts Solu,ons Inc., a technology-
                                                                                                                          based organiza,on located in Vaughan, Ontario. Hassnane has
                                                                                                                          been involved in the technology field for over 20 years. He has
                                                                                                                          led numerous projects with both the private and public sector
                                                                                                                          including key ini,a,ves for the Ministry of Community and Social

                                      B IOGRA P H I E S
                                                                                                                          Services (MCSS). Darts Solu,ons, in coopera,on with families and
                               Hassnane Sajan is the CEO at Darts Solu,ons Inc., a technology-                            several agencies, has developed MyDirectPlan – an online
                               based organiza,on located in Vaughan, Ontario. Hassnane has                                province-wide cloud based applica,on that assists families
                               been involved in the technology field for over 20 years. He has                             in managing their Passport, Residen,al and Special Services at
                               led numerous projects with both the private and public sector                              Home (SSAH) funding. His organiza,on has also collaborated with
                               including key ini,a,ves for the Ministry of Community and Social    !                      the Developmental Services sector to build a standardized data
                               Services (MCSS). Darts Solu,ons, in coopera,on with families and                           transfer protocol.
                               several agencies, has developed MyDirectPlan – an online              Hassnane Sajan
                               province-wide
                                 Hassnane Sajancloud
                                                   is based applica,on
                                                      the CEO  at Dartsthat   assists Inc.,
                                                                         Solu,ons     families
                                                                                            a technology-
                               inHASSNANE
                                   managing
                                 based                 SAJAN,
                                            their Passport,
                                        organiza,on                  is the
                                                             Residen,al
                                                       located  in Vaughan,     CEOServices
                                                                         and Special
                                                                               Ontario. atHassnane
                                                                                                at      has                 DR.
                                                                                                                          Dr.  SarahSARAH          SCHOCK,
                                                                                                                                      Schock is a Research           is atathe
                                                                                                                                                             Associate      Research
                                                                                                                                                                               Children’s Hospital
                               Home                                                                                       ofAssociate
                                                                                                                              Eastern Ontarioat Research
                                                                                                                                                    the Ins,tute.   Her interests   lie in
                                 been(SSAH)
                                 Darts        funding.
                                                 in theHis
                                          Solutions
                                       involved            organiza,on
                                                          Inc.,
                                                         technologya fieldhasfor
                                                                              also
                                                                        technology-collaborated
                                                                                 over  20 years.with He has                                                 Children’s        Hospital
    !                          the                                                                                        repurposing drugs to find novel therapeu,cs for rare
                                 ledDevelopmental
                                     numerous
                                 based
                                                    Services
                                                 projects
                                               organization
                                                             sector
                                                           with     to the
                                                                 both   buildprivate
                                                                       located
                                                                              a standardized   datasector
                                                                                     andinpublic                            of   Eastern       Ontario      Research         Institute.
                               transfer protocol.                                                                         neurodevelopmental disorders, such as ReB syndrome. Sarah
    Hassnane Sajan          including key Ontario.  Hassnane
                           Vaughan,          ini,a,ves for the Ministry     has of Community
                                                                                    been          and Social                Her interests
                                                                                                                          focuses   her studies onlie
                                                                                                                                                    thein   repurposing
                                                                                                                                                         brain                   drugs
                                                                                                                                                               as well as the gastrointes,nal
                            Services (MCSS).
                           involved         in theDarts technology
                                                          Solu,ons, in coopera,on
                                                                               field for   with families and                to She
                                                                                                                          tract.  find      novelanalyzing
                                                                                                                                       is currently   therapeutics           for changes
                                                                                                                                                              the neurochemical     rare in
                            several20
                           over       agencies,    has developedled
                                          years.  He                 MyDirectPlan – an online                               neurodevelopmental
                                                                                                                          each   of these systems and determining disorders,
                                                                                                                                                                       how neurons such
                          Dr.  Sarah Schock   is a ResearchhasAssociate atnumerous
                                                                             the Children’s Hospital
                            province-wide      cloud   based   applica,on     that assists
                                                                                       lie in families                    communicate       differently in various
                                                                                                                            as Rett syndrome.                SarahReB syndrome
                                                                                                                                                                       focusesmodels. her
                           projects
                          of               with
                              Eastern Ontario         both
                                                 Research      the private
                                                            Ins,tute.  Her interests  and
                            in managing
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                                         drugs to find           Residen,al
                                                         novel therapeu,cs     and   Special
                                                                                for rare       Services at                Discovering drugs which restore proper neuronal communica,on
                           public sector             including       key initiatives                                        studies        on   the     brain
                                                                                                                          is the primary goal of her research.
                                                                                                                                                                  as   well     as    the
                            Home (SSAH) funding.
                          neurodevelopmental              His organiza,on
                                                    disorders,  such as ReB has     also collaborated
                                                                               syndrome.     Sarah        with
!
                           for    the MinistryServices    of Community                and                                   gastrointestinal tract. She is currently
                            the Developmental
                          focuses   her studies on the brain sector
                                                                 as well to build
                                                                         as the     a standardized
                                                                                  gastrointes,nal  ! data
                           Social
                            transfer
                          tract. She isServices
                                       protocol.      (MCSS).
                                         currently analyzing    theDarts    Solutions,
                                                                    neurochemical      changes in
                                                                                                                            analyzing                the         neurochemical
     in cooperation
  Hassnane   Sajan    witheachfamilies       and      several       agencies,
                                 of these systems and determining how neurons          has          changes
                                                                                                    Sarah Schock in each  of  these      systems      and     determining         how
     developed MyDirectPlan
                          communicate– differently
                                              an online in various province-wide
                                                                    ReB syndrome models.            neurons communicate differently in various Rett syndrome
     cloud based application         that    assists     families               at the Children’smodels.
                                                                      in neuronal
                                                                          managing                    Hospital Discovering drugs which restore proper neuronal
                          Discovering    drugs  which restore    proper              communica,on
                            Dr. Sarah   Schock    is a Research    Associate
                          is the primary
     their Passport, Residential       and goalSpecial
                                                 of her research.
                                                              Services      at     Home             communication      is the primary goal of her research.
                            of Eastern Ontario Research Ins,tute. Her interests lie in                                     Dr. Erick Sell, MD, is a paediatric neurologist at the Children’s
   ! (SSAH) funding. His organization has also collaborated with
                            repurposing drugs to find novel therapeu,cs for rare                                            Hospital of Eastern Ontario (CHEO) and Assistant Professor at the
     the Developmental
    Sarah Schock           Services       sector todisorders,
                            neurodevelopmental            build asuchstandardized
                                                                           as ReB syndrome. Sarah                          University of OBawa. Aper medical training in Costa Rica, he
     data transfer protocol.focuses her studies on the brain as well as the gastrointes,nal                                completed two fellowships - pediatric neurology and pediatric
                                tract. She is currently analyzing the neurochemical changes in                            epilepsy - both at the Hospital for Sick Children in Toronto from
                                each of these systems and determining how neurons                                         2002 to 2006. He then returned to Costa Rica in 2007 and worked
                               DR.      ERICK SELL, MD,
                                communicate                          is aReBpaediatric                                     DR.
                                                                                                                          Dr.
                                                                                                                          at  Vicky
                                                                                                                             the    Siu,VICKY
                                                                                                                                 Na,onal MD,
                                                                                                                                          Children’s      SIU,inand
                                                                                                                                              is a paediatrician
                                                                                                                                                       Hospital         medical
                                                                                                                                                                      MD,
                                                                                                                                                                    San           gene,cist
                                                                                                                                                                                   is epilepsy
                                                                                                                                                                         Jose, in the     a
                               Dr. Erick Sell, MD,differently  in various
                                                   is a paediatric neurologist  syndrome
                                                                                at           models.
                                                                                   the Children’s                         working outunit
                                                                                                                                        of the  London   Health   Sciences  Centre   and is the
                               neurologist
                                Discovering       at
                                                drugs  the
                                                       whichChildren’s
                                                              restore       Hospital
                                                                       proper   neuronal ofcommunica,on                    paediatrician and medical geneticist
                                                                                                                          monitoring        and  the vagal nerve   program.    He  returned  once
                               Hospital of Eastern Ontario (CHEO) and Assistant      Professor at the                     medical
                                                                                                                          more     director
                                                                                                                                to CHEO  in  of thewhere
                                                                                                                                             2010    Medical
                                                                                                                                                           his Gene,cs
                                                                                                                                                               research   Program
                                                                                                                                                                          interests  of
                                                                                                                                                                                     include
                               Eastern
                               University  ofOntario
                                is the primary          of (CHEO)
                                                  goal Aper
                                               OBawa.      her         and Assistant
                                                               research.
                                                             medical  training in Costa Rica, he                           working
                                                                                                                          Southwestern    out
                                                                                                                                          Ontario. of   the     London           Health
                                                                                                                                                     She remembers being introduced to ReB
                                                                                                  !                       paediatric epilepsy  and electroencephalography.
!                               Professor
                               completed   twoat    the University
                                                fellowships                 of Ottawa.
                                                             - pediatric neurology    and pediatric Erick Sell             Sciences
                                                                                                                          Syndrome    by Dr.Centre       and during
                                                                                                                                             Patrick Macleod      is the her medical
                                                                                                                                                                              fellowship training.
                                After -medical
                               epilepsy                training
                                          both at the Hospital         in Children
                                                                 for Sick CostainRica, Toronto from                        director
                                                                                                                          She              of the
                                                                                                                               was instrumental           Medical
                                                                                                                                                   in founding   and leadingGenetics
                                                                                                                                                                                the
Sarah Schock                    heDr.toVicky
                               2002     2006.Siu,
                                        completed  MD, returned
                                              He then   is a two
                                                             paediatrician
                                                                   to Costa    andinmedical
                                                                        fellowships
                                                                             Rica    2007 and - gene,cist
                                                                                                 worked                   mul,disciplinary
                                                                                                                           Program of        ReB Syndrome
                                                                                                                                                   Southwesternclinic at Thames     Valley Children’s
                                                                                                                                                                              Ontario.
                               at  working
                                  the Na,onaloutChildren’s
                                                  of the London
                                                           Hospital Health
                                                                      in San Sciences
                                                                             Jose, in theCentre   and is the
                                                                                           epilepsy                       Centre
                                pediatric neurology and pediatric                                                          She in    London, ON. Shebeing
                                                                                                                                  remembers             is con,nually    inspired by many
                                                                                                                                                                   introduced            to
                                   medicalunit
                               monitoring   director   of vagal
                                                 and the  the Medical      Gene,cs
                                                                nerve program.     He Program     of
                                                                                       returned once                      wonderful young women with ReB syndrome and their families.
                                epilepsy
                               more
                                              - both
                                     to CHEO in 2010
                                                            at the
                                                       where his
                                                                          Hospital        for                      Rett Syndrome by Dr. Patrick Macleod
                                   Southwestern      Ontario.   Sheresearch
                                                                     remembersinterests  include
                                                                                     being   introduced to ReB
    !                           Sick Children
                               paediatric epilepsy    inelectroencephalography.
                                                    and   Toronto from 2002 to                                     during her fellowship training. She was
                                   Syndrome by Dr. Patrick Macleod during her fellowship             ! training.
     Erick Sell          2006.
                         Dr.She  He
                             Erick
                                wasSell,then
                                          MD, isreturned
                                                 a paediatric
                                      instrumental             to
                                                     in founding    Costa
                                                                neurologist   Rica
                                                                              at
                                                                     and leading the  Children’s
                                                                                    the                            instrumental in founding and leading
      in 2007 and worked Hospital
                          at  the  ofNational
                                       Eastern     Children’s
                                                 Ontario (CHEO)      Hospital
                                                                   and  Assistant  in      the
                                                                                    Professor  at
                                                                                           Vicky
                            mul,disciplinary ReB Syndrome clinic at Thames Valley Children’s     multidisciplinary
                                                                                                  the
                                                                                                 Siu               Rett Syndrome clinic at Thames Valley
      San Jose, in the epilepsy
                            Centremonitoring
                         University inofLondon,
                                          OBawa.ON.  unit
                                                   Aper
                                                      She   isand
                                                         medical      the vagal
                                                                    training
                                                               con,nually    in Costa by
                                                                            inspired       Children’s
                                                                                        Rica, he
                                                                                           many          Centre in London, ON. She is continually inspired
                         completed
                            wonderfultwo
      nerve program. He returned        oncefellowships
                                          young  more -with
                                                 women     pediatric
                                                          to   CHEO    neurology
                                                                          in 2010
                                                                 ReB syndrome       and their
                                                                                    and  pediatric
                                                                                           byfamilies.
                                                                                                 many wonderfulDr Johnyoung      women
                                                                                                                          Vincent,             withScien,st/Principal
                                                                                                                                    PhD, is a Senior Rett syndrome    Inves,gator
      where his research epilepsy
                          interests- both   at the Hospital
                                         include              for Sick Children
                                                     paediatric         epilepsy  in Toronto
                                                                                           andfromtheir families. at the Centre for Addic,on and Mental Health and is a Professor
                         2002 to 2006. He then returned to Costa Rica in 2007 and worked                          of Psychiatry and cross-appointed as a full member in the
    ! and electroencephalography.                                                                             Ins,tute of Medical Science at the University of Toronto. His work
                           at the Na,onal Children’s Hospital in San Jose, in the epilepsy
                           monitoring unit and the vagal nerve program. He returned once                      is on the gene,cs of neuropsychiatric and neurodevelopmental
   Vicky Siu                                                                                                  disorders. In 2004, he co-authored a seminal paper on the
                           more to CHEO in 2010 where his research interests include
                                                                                                              iden,fica,on of an alterna,ve version (isoform) of the ReB
!                          paediatric epilepsy and electroencephalography.                                    Elli Weisbaum is an instructor for the Applied Mindfulness and
                                                                                                              syndrome protein, MeCP2, iden,fying the first ReB muta,on in
  Erick Sell              DR. JOHN VINCENT, PhD, is a Senior
                             Dr  John  Vincent, PhD,  is a Senior Scien,st/Principal Inves,gator               ELLI exon
                                                                                                              Medita,on
                                                                                                              MECP2       WEISBAUM,
                                                                                                                            Cer,ficate Program atisthean       instructor
                                                                                                                                                         University
                                                                                                                              1. Dr Vincent’s group also iden,fied
                                                                                                                                                                    of Toronto in the
                                                                                                                                                                    the gene
                             at the Centre for Addic,on
                          Scientist/Principal               and Mentalat
                                                     Investigator        Health
                                                                             theand is a Professor            con,nuing     Educa,on   Faculty. She holds a masters degree
                                                                                                              PTCHD1 as a new X-linked gene for ASD. Dr Vincentand
                                                                                                               for     the       Applied         Mindfulness                 focused
                                                                                                                                                                       also works on
                             of Psychiatry                                                                    on bringing mindfulness into educa,on. She spent a year as the
                          Centre        for and  cross-appointed
                                              Addiction        and as aMental
                                                                        full member in! the                    Meditation
                                                                                                              iden,fying                Certificate
                                                                                                                            autosomal recessive                Program
                                                                                                                                                  genes ID, through  the study of
                                                                                                              interna,onal program coordinator for Wake Up Schools, a global
                             Ins,tute
                          Health        of Medical
                                      and          Science at the
                                            is a Professor          University of Toronto. His work
                                                                of Psychiatry                                 families
                                                                                                               at the   fromUniversity
                                                                                                                               countries with high
                                                                                                                                               of rates   of consanguinity
                                                                                                                                                    Toronto            the(Pakistan
                                                                                       John Vincent
                             is on the gene,cs of neuropsychiatric and neurodevelopmental                     ini,a,ve   to cul,vate mindfulness    in educa,on, in
                                                                                                                                                                  established  by
                                                                                                              and Iran).
                          and cross-appointed as a full member                                                 continuing
                                                                                                              Nobel                  Education
                                                                                                                      Peace Prize nominee,              Faculty.
                                                                                                                                              scholar and  Zen MasterSheThich Nhat
                             disorders. In 2004, he co-authored a seminal paper on the
                          in the Institute of Medical Science at                                               holds
                                                                                                              Hanh.   Shea     masters
                                                                                                                           is currently     degree
                                                                                                                                        pursuing  her PhDfocused        on of
                                                                                                                                                           at the University
                             iden,fica,on of an alterna,ve version (isoform) of the ReB                        Toronto   in the mindfulness
                                                                                                                                Ins,tute of Medicalinto
                                                                                                                                                     Science  and comple,ng her
                          the    University     of  Toronto.      His   work    is
                             syndrome protein, MeCP2, iden,fying the first ReB muta,on in
                                                                                                               bringing                                    education.
                                                                                                              teacher training with Search Inside Yourself, an emo,onal
                          onMECP2
                                the exon
                                       genetics      of neuropsychiatric
                                            1. Dr Vincent’s  group also iden,fied the gene                      She spent a year as the international
                                                                                                              intelligence and mindfulness program.
                          and     neurodevelopmental             disorders.    In
                             PTCHD1 as a new X-linked gene for ASD. Dr Vincent also    !      works on         program coordinator for Wake Up
   !                      2004,     he  co-authored        a seminal     paper
                             iden,fying autosomal recessive genes ID, through the study of                     Schools, a global initiative to cultivate
     on the identification families
                              of anfrom  alternative      version    (isoform)           Elli Weisbaum
                                                                                       mindfulness      in education, established by Nobel Peace
                                             countries with  high rates of consanguinity      (Pakistan
     John Vincent
     of the   Rett syndrome and
                              protein,
                                   Iran). MeCP2, identifying the first                 Prize nominee, scholar and Zen Master Thich Nhat Hanh.
        Rett mutation in MECP2 exon 1. Dr Vincent’s group also                                        She is currently pursuing her PhD at the University of Toronto
        identified the gene PTCHD1 as a new X-linked gene for ASD.                                    in the Institute of Medical Science and completing her
        Dr Vincent also works on identifying autosomal recessive                                      teacher training with Search Inside Yourself, an emotional
        genes ID, through the study of families from countries with                                   intelligence and mindfulness program.
        high rates of consanguinity (Pakistan and Iran).
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