Rett News Support today, hope for tomorrow - IN THIS ISSUE

Rett News Support today, hope for tomorrow - IN THIS ISSUE
      Rett News
       upport today, hope for tomorrow
                                                 issue: two/2019

  October is Rett Syndrome Awareness Month
  Busting Myths about Rett Syndrome
  Second Clinical Trial Announced
  Health Checklist for Rett Syndrome Published
Rett News Support today, hope for tomorrow - IN THIS ISSUE
Rett UK
  Victory House, Chobham Street, Luton,
                                                              Rett News Contents
  Bedfordshire LU1 3BS
  General Enquiries: 01582 798 910
  Support Line: 01582 798 91 1
  Email:                                      Welcome from the CEO                       3
  Website:                                     October is Rett Syndrome
  Facebook: Rett UK                                           Awareness Month                           4
  Twitter: @RettUK
  Just Giving:                Support Round Up                           5
  Lee Allen, Ann Clwyd MP, Dame Evelyn Glennie,               Raising Awareness and The Rett
  Gloria Hunniford, Victoria Murphy, Jon Snow                 Disorders Alliance Health Checklist      10
  Yvonne Milne MBE
                                                              The Old Palace Lodge Hotel
  VICE-PRESIDENT                                               Family Weekend Deals                     12
  Lorna Jaffa                                                 Good News Stories                        14
  Honorary Chairman: Hilary Truss                             The Britten’s Tea Party                   16
  Honorary Vice-Chairman: Stuart Ledger
  Honorary Treasurer: Steve Peckham                           North London Support Group Picnic 17
  Tim Addison, Clive Beadle, Michael Britten,
  Joanna Campobello, Philip Gander, Stuart Ledger,
                                                              Rett UK Clinics Survey                    18
  Celia Carter, Peter Oliver, David Rogerson,                 Other People’s Reactions                  21
  Robert Valentine, Rebecca Walker-Date
  RETT UK STAFF TEAM                                          Dr Gillian Townend Academic Success 24
  CEO: Becky Jenner
  Deputy CEO: Robert Adamek
                                                              Rett UK Communication and
  Family Support Manager: Julie Benson                        Education Support Update                 26
  Office Manager: Donna Tinch
  Editor: Donna Tinch                                         Network for Speech and
  Head of Fundraising: Viviane Vayssieres                     Language Therapists                      29
  Fundraising Support Officer: Michelle Prendergast
  Admin & Events Co-ordinator: Keren de Coito                 Research Update                          30
  Communication & Education Support Team:
  Dr Gill Townend, Callie Ward, Abigail Davison-Hoult         Myths About Rett Syndrome                 31
  Bookkeeper: Becca Prince
                                                              2018/19 Highlights & Impact              36
  Rett News is published quarterly by Rett UK
  Designers: 1st Impression Creative Ltd                      Fundraising Round Up
  Printer: Creamers Ltd                                        London Marathon                         38
  The views expressed herein do not necessarily represent
  the views of the editor or of Rett UK’s officers, members
                                                               Thank You                               40
  or Board of Trustees. Parts of this publication may be       Good Luck                               52
  reproduced by permission. Note: Rett UK can accept no
  responsibility for items advertised in Rett News.            Might you be a Rett Champion            53
                                                               2019 Events                             54
 Rett syndrome (RTT) is a rare neurological
 disorder and is the most common genetic cause
                                                               Events for 2020 You Can Get
 of severe disability in females, yet very few people          Involved In                             55
 have ever heard of it. Although rare, males can
 have Rett syndrome too. It is present from                   Create a Legacy                          59
 conception and usually remains undetected until
 major regression occurs at around one year of                Welcome to Our New Team Members 60
 age, when children may lose acquired skills and              Regional Ambassadors                      61
 become withdrawn. Genetic but largely not
 inherited, Rett syndrome is usually caused by a              300 Club Results                         63
 fault on a gene called MECP2 which is found on
 the X chromosome. People with Rett syndrome                  Membership                               64
 have profound and multiple physical and
 communication disabilities and are totally reliant           Make a Donation Form                     65
 on others for support 24/7 throughout their lives.
                                                              Christmas Cards and Gifts                66

RETT NEWS · ISSUE TWO/2019 · PAGE 2                                     HELP SUPPORT US TO HELP SUPPORT YOU
Rett News Support today, hope for tomorrow - IN THIS ISSUE
Welcome to Your
                   Latest Rett News

Hello and welcome to another bumper issue of your Rett News! We hope summer has
gone well! Back to school is just around the corner – sighs of relief heard all round!
You may have noticed our summer issue is a tad late but that is because we have
so much in it! Fed up with people giving odd looks or staring when you are out
and about with your child? Something sadly I think we have all experienced, well
read our article on page 21 for some tips about how to handle this.
Some exciting news in the Rett community with the announcement of a second UK
clinical trial for Rett syndrome on page 30 and an important new resource for our
families, The Health Checklist for Rett syndrome has been published. See page 10.
Dr Daniel Lumsden presented Busting Myths in Rett Syndrome at a recent
neurological conference in Birmingham which we can share with you on page 31 –
really interesting read.
In the centre pages, we take a look back at 2018/19 with highlights from the year,
where we spent funds raised and the impact our work has for our families. I am
delighted to see that our spending on charitable activities over the last four year
has increased by 51%! That is more services and more families helped every day.
In June, the team were in Glasgow, for our second regional event of the year. It was
fantastic to hear the feedback from the families there and to meet some older ladies
who had only recently been diagnosed. We are in High Wycombe on 11th/12th
October, so we look forward to meeting the families and the professionals that are
supporting them at Chiltern Wood School.
Global Rett Syndrome Awareness Month is nearly upon us again! This is a great
opportunity to shout about Rett syndrome – raising awareness = new interest =
new supporters! We have lots of easy ways for you to get involved on page 4.
The Big Give is back so please ‘save the date’ for the online donation stage in
December – one donation but double the impact! If you are saving pennies in a jar
or would rather make a donation than send Christmas cards – please make your
donation on the Big Give.
Huge thanks and admiration to all our amazing fundraisers – read their inspiring
stories and antics on pages 38 to 51. Without this support Rett UK cannot continue
– so if you are thinking of getting involved please let us know. Together we are
making a brighter future for people affected by Rett syndrome.
Best wishes,

Becky Jenner, CEO

Rett News Support today, hope for tomorrow - IN THIS ISSUE
Rett Syndrome Awareness Month
For a whole month, we have the opportunity to stimulate
recognition via Public Relations and encourage fundraising
through donations.

Here are some simple ways you can        Want to get involved by raising
get involved and make some noise for     some funds to support our work?
Rett syndrome!
                                         • Can you get a school in your area to
Online                                     wear something purple or green on a
• Follow us on social media using          certain date? Or how about at your
  our hashtags – Twitter, Facebook         work place, collecting donations to
  and Instagram                            support our work?
• What is the biggest challenge your
  daughter/son faces on a daily basis?   • Get friends and family together for a
  Share a social media post and photo      local sponsored cycle/run/swim/walk
  of your daughter/son                     #WalkOverRett
  #LivingWithRettSyndrome                • Hold a cake sale/coffee morning at work
  #RettSyndromeAwareness                   #BakeForRett
  #RettUK                                Access a full list of resources and ideas at
• Write a guest blog (approximately
  250 words and a photo) for our         Don’t forget to let us know what you
  website, emailing it to                have planned, we can support you with                fundraising and promotional materials.
                                        Got your own idea of what you would
We will be posting regular updates and like to do? We will help you every step
sharing information about Rett syndrome of the way. Call Viv on 01582 798 910
throughout the month.                   or 07929 355 541.
                                         In Bedfordshire, schools managed by
                                         Active Luton and Luton Borough Council
                                         are supporting Colours for Rett, one day
                                         during the month of October, children will
                                         pay £1 to wear purple or/and lime green
                                         Rett colours. If you wish to participate
                                         posters and envelopes are available.

                                             We would love to see some photos
                                                and hear how it went for future
                                                          issues of Rett News.
                                                             Please share with

Rett News Support today, hope for tomorrow - IN THIS ISSUE
Support Round Up                          Improving knowledge
                   by Julie Benson                           and understanding
                                                             of Rett syndrome

                                             A big thank you to everyone who
                                             presented or supported us at this event,
                                             including the volunteers who helped
                                             with the care rooms, the school staff
                                             who made sure we had everything we
                                             needed available and also to the kitchen
                                             staff who gave us the most amazing
                                             buffet lunch.
                                             Special thanks to our team of professionals
                                             who once again gave up their Saturday
                                             to attend this event: Dr Adrian Kendrick,
Regional Day, Scotland –                     Dr Ana Abdala Sheikh and Dr Mark Bailey.
Isobel Mair School
In June, the Rett UK team headed to
Scotland for a regional day. Isobel Mair     Feedback from Eva mum to Lysbeth,
School were fantastic hosts and              aged 4
supported the event.
                                           Fantastic presentations made by very
We had 15 families from all over Scotland knowledgeable people. Grateful for all
and we were pleased to see them all.       their expertise, advice and research into
Our professionals gave some informative the different areas of Rett syndrome.
and interesting presentations. Dr Adrian
                                           Thank you so much for keeping us up
Kendrick, spoke about the impact of
                                           to date with such important information.
breathing and sleep apnoea, Mark Bailey,
                                           It’s so, so important for the health and
updated us about the latest research
                                           wellbeing of our children. Thank you
projects they are working on, Elizabeth
                                           for being there and being such an
Dougan from The Office of Rare Conditions
explained about their role in Scotland,    incredible support.
the projects they are currently working
on and what they can offer families with
children with Rare Conditions in Scotland. The families who attend always give such
We were also delighted to welcome Dr         great feedback, which helps us to keep
Gill Townend to this event, who introduced   these events in line with what you want,
us to the International Communication        but we are always interested in hearing
Guidelines, she has been developing with     about what else you may like on the
partners across the world. Gill is also      programme at future events.
supporting the Rett UK communication
and education project alongside Callie       Please call Julie on 01582 798 911 with
and Abigail. Exciting times!                 any suggestions.

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Rett News Support today, hope for tomorrow - IN THIS ISSUE
Rett News Support today, hope for tomorrow - IN THIS ISSUE
Look out High Wycombe, you are next on our list to visit! We can’t wait to see you
on 12th October at Chiltern Wood School, Cressex Site, Verney Avenue, High Wycombe,
Buckinghamshire HP12 3NE.
If you haven’t received your invitation yet, please call Julie on 01582 798 911 or
email and she we will send you a booking pack. We do need
to know if you are coming along so that we can cater for everyone and to ensure
we have enough carers.

           DATES FOR                          Professional Events

           YOUR DIARY                         11th October 2019
                                              Chiltern Wood School
              Regional Events                 High Wycombe
                                              Buckinghamshire HP12 3NE
                2019/2020                     To book:
         Parents/carers/siblings and
        professional practitioners are
         all welcome to attend these          27th March 2020
       informative, entertaining days.        London/Kent
                                              5th June 2020
                                              Northern Ireland
                                              9th October 2020
                                              North East
                                              Family & Professional Events
                                              12th October 2019
                                              Chiltern Wood School
                                              High Wycombe
                                              Buckinghamshire HP12 3NE
                                              To book:
                                              28th March 2020
                                              6th June 2020
                                              Northern Ireland
                                              10th October 2020
                                              North East

Rett News Support today, hope for tomorrow - IN THIS ISSUE
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  Rett UK receives no direct government           that information.
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  generosity of our families, their         Thank you to everyone who
  friends and colleagues in order to         has returned their forms or
  help us continue to provide the           completed online. For those
  much needed and valued Family             who haven’t yet responded,
  Support Service.                          we urge you to do so as soon
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  We do also regularly receive funding
  from grants and trusts but                 If you require a copy of the
  increasingly they are asking us to tell    form, please contact Donna
  them about the difference we make           Tinch on 01582 798 910 or
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  syndrome and their families.                 Alternatively, you may
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  this information to funders in order
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  share, please email

  Thank you!

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Raising Awareness                                              Improving the health
and The Rett Disorders                                         and well being of
                                                               people with
Alliance Health Checklist                                      Rett syndrome

Important New Resource for
Families and Professionals
The Rett Disorders Alliance UK (Reverse
Rett, Rett UK and FOXG1) are delighted
to bring you The Rett Syndrome Health
Checklist. The Health Checklist provides
information to help with symptom
identification and management including
suggestions for drugs which may help
and those which may cause difficulties
for people with Rett syndrome. There are The Rett Disorders Alliance Health Checklist
also links to relevant research papers,
case studies and best practice guidance. Many thanks to everyone who has
                                            contributed to this important document
The checklist is a result of two years      and to The Bolland Charitable Fund for
collaborative work between the charities their support.
and the Rett Disorders Working Group;
clinicians, therapists and consultants who Download your copy from
are very experienced in Rett syndrome.
This is the first version and we anticipate Alternatively, we do have a limited
there will be regular updates.              number of printed copies available.
There will be further papers linked to the If you would like a printed copy, please
checklist which will cover some key         email
areas in more depth. We hope you will
find this a key ‘go to’ document to
advocate for the best care and treatment
for your daughter or son. Please share it       Rett Disorders Alliance UK
with key people involved in their care.              RETT UK • REVERSE RETT • FOXG1 UK

                                       MY HEALTH PASSPORT
                                       Don’t forget to make use of the Rett UK Health
                                       Passport, which can be downloaded from
                             , which enables
                                       you to record and easily update everything that
                                       someone involved in your daughters’/son’s care
                                       should know in one place.

Awareness Raising and                          Neurological Disorders in the Community.
Promoting the Rett Syndrome                    I was delighted again that Rett UK and
                                               Reverse Rett were able to share a stand.
Health Checklist
                                               Rachael Stevenson and Wesley Havill
by Becky Jenner                                from Reverse Rett, Yvonne Milne and
We were fortunate to have two great            myself from Rett UK all talked to lots of
opportunities to raise awareness of Rett       health professionals and were able to
syndrome, the work of Rett UK and              give them copies of The Health Checklist
share The Health Checklist in June.            hot off the press! Their feedback was
On Monday 10th June, I shared a stand          excellent; they could really see the benefit
with our colleagues, Beth Johnson and          of the document for a rare disorder..
Oliver Perkins from Reverse Rett at an         It was also great to have Dr Daniel
Epigenetics Conference held at The             Lumsden, who leads the Rett clinic at
Royal College of Medicine, London.             The Evelina Children’s Hospital in London
The conference provided ‘detailed updates      presenting. His presentation was
in the exciting field of Epigenetics,          Presenting with Features of Autism,
focusing on how chemical modifications         Parkinson’s and Epilepsy – Addressing a
to our DNA can shape our health from           Diagnostic Challenge. The focus of his
conception to old age from one                 talk was to dispel some of the myths
generation to the next. Epigenetics is         which exist around Rett syndrome –
emerging as a key player in medicine.’         that it is not neurodegenerative, that
                                               it only affects females, that the majority
There were some really interesting
                                               will die young etc. He touched on what
presentations and discussions about            we have learnt over the last 50 years
how epigenetics may help us understand         since the first children were diagnosed
much more about health and disease.            and the clinical trials which we hope
The key note speaker was Sir Adrian Bird,      will provide some relief to certain
whom many of you will know from his            symptoms of the disorder. Read about
Rett syndrome reversal research with lab       his presentation on pages 31-35.
mice. His presentation was The Genetics
and Epigenetics of Rett Syndrome which
focused on the failure of MeCP2 protein
whose primary function is to subtly restrain
gene expression in a specific way and
talked about the reversal of symptoms
in lab mice when MeCP2 is replaced.
The conference itself provided lots of
opportunities to talk to professionals
from various disciplines about Rett
syndrome (the majority had not heard of
it) and all gave really positive feedback
on The Health Checklist which we had in
the draft format.
On 25th June, in Birmingham, we officially
launched The Health Checklist at The
Primary Care & Community Neurology
Society 2019 Annual Symposium, the             Sir Adrain Bird and Becky Jenner
focus this year was Managing Complex           at the Epigenics conference

HELP SUPPORT US TO HELP SUPPORT YOU                           RETT NEWS · ISSUE TWO/201 9 · PAGE 11
Our Patrons –
The Old Palace Lodge

Complimentary breaks for our families and carers at The Old
Palace Lodge Hotel
Social Responsibility is important to us, we take an interest in wider social issues
that have no direct impact on profit margins, we like to support our local
communities; amongst other engagements every year we select a non- for-profit
organisation as our Charity of the Year.
When I read about Rett syndrome and the support offered by Rett UK to the families
affected, I decided to patronage this wonderful charity based in Bedfordshire.
Once I had met Becky Jenner, I knew it was absolutely the right thing to do!
As parents ourselves, my husband and I are attracted to helping associations
dedicated to the welfare of children with disabilities, would it be by creating
awareness through our marketing platforms, raising their profile with partnership
solutions or sponsoring innovative fundraising events.
However, while our hotel strives to deliver excellence in all aspects of hospitality,
providing business and leisure visitors with a Four-star experience, we realise that
for some parents or carers of children with Rett syndrome it is a luxury they can ill
afford, not always financially but in term of deliberation, organisation and peace
of mind hence we are offering a complimentary overnight stay with breakfast for
2 parents/carers on a Sunday night.
To redeem this exclusive offer, request your password from Rett UK. To book
simply email or call 01582 662 201-Opt1, quoting
your password.

Victoria Murphy, Hotel Manager

  What a fantastic opportunity Victoria Murphy at The Old Palace Lodge has
  given to our families and carers. We really appreciate this kind gesture. Some
  feedback from our families who have been able to use the offer include:

  Just want to say a huge thank you! We stayed at The Old Palace Lodge last
  night and had a lovely relaxing overnight stay! The room was wonderful; think
  they put us in one of the biggest rooms! We felt very chilled this morning.
  Thank you.

Family Weekend Deals and
 Tickets to Whipsnade Zoo
 Weekend deals are available for 2 adults and/or 2 adults + 2 children* under the
 age of 12 and include dinner and bed & breakfast for one night.
 Deals are for any month on a Friday, Saturday or Sunday night. Extended stays
 are available.
 To book contact the Old Palace Lodge Hotel on 01582 662 201-Opt1 or email
 *This as an opportunity for a respite break for the parents/carers and siblings,
 or parents only so these offers are not suitable for children with mobility issues.

 4 star weekend break
 2 adults – £140.00
 2 adults + 2 children – £160.00
 2 adults only Deluxe Room – £170.00

 Elephantastic Weekend – family weekend break with zoo tickets
 2 adults – £186.00
 2 adults + 2 children – £230.50

Good News Stories

by Brett Martin
Imagine this scene, the sun is shining, the bands are playing on stage, thousands of
people dancing, laughing and having fun. Where are we? Glastonbury? No remember
I said it was sunny day! We are at a phenomenal music festival in East Kent.
Bare with me a little more as I describe how two of our beautiful girls met last year.
Kerry and Charlotte both met in February 2018 on Day 2 of an AAC session run by
Rett UK. Both ladies were awaiting their Eyegaze assessments and they made a
connection. Kerry’s mum and dad (Heather and Jerry) and I also met up on some
subsequent Tobii Dynavox training after this event, we promised to keep in touch
and then failed all by ourselves at communicating!
Anyway, let me take you back to the Festival, 5 miles from where Charlotte lives
and two hours from where Kerry lives. What were the chances of these two
amazing women with Rett meeting up again in a field? Well they did whilst both
having the time of their lives at a festival. Whilst neither Kerry or Charlotte had
their Eyegaze’s with them, what they did have was their love of music and their
huge smiles. What better way to communicate than through the power of music?
The festival is specifically organised for those with special needs by three mums,
catering for all disabilities and their carer’s. It’s well worth checking out the festival
if you think your child could benefit from an experience like this. For further
information, visit

Kerry and Charlotte                           Brett, Charlotte, Kerry and Heather

                                          by Michelle Prendergast
                                          My daughter, Cerys aged 8, made her Holy
                                          Communion sacrament in May.
                                          In the lead up to the big day, Cerys had special
                                          time with Father Philip for four weeks on a
                                          Saturday, when Father went through why and
Cerys with Father Philip                  what First Holy Communion is. School created
                                          Cerys a low-tech pecs book of mass and First
                                          Holy Communion and Cerys used her eye gaze
                                          device to show her understanding with yes and
                                          no options. When answering one of the
                                          questions Cerys said yes and we shocked but
                                          delighted when she then said the word ‘Jesus’!
                                          To see our beautiful daughter in her Holy
                                          Communion dress not only brought us all to
                                          tears but many of the parishioners. Father Philip
                                          did a special speech during the mass to explain
                                          Cerys’s condition and how excited he was to see
Cerys                                     Cerys receive her First Holy Communion.
                                          It was a truly special day for all our family and
                                          friends to witness Cerys taking part in this holy
                                          sacrament, together with all the children in her
                                          class from her mainstream school (which she
                                          attends one day a week).
                                          We are incredibly proud of Cerys. She was a
                                          true star.

Cerys and her friends

                                            We’d love to hear more of your stories. Please
                                           share your daughter or son’s good news stories
                                                  or achievements with us here at Rett UK.
Cerys with mum, Michelle and dad, James

HELP SUPPORT US TO HELP SUPPORT YOU                            RETT NEWS · ISSUE TWO/201 9 · PAGE 15
The Britten’s Tea Party
                                                               Connecting families
                                                               – reducing isolation

Michael and Wendy Britten, whose                was worthwhile and helpful to all the
22-year-old daughter Sarah has Rett             parents there and also to the carers who
syndrome, have held a tea party for             accompanied some of the children.
families at their lovely home for the           There was food of plenty and relaxed
past 16 years. Here they report on this         places to eat it together around the
year’s event.                                   outside tables!
On Sunday 19th May, Wendy and Michael           A particular concern that worried the
Britten hosted several families at their home   parents with young teenage daughters
in Rockhampton, South Gloucestershire.          was the matter of ‘Transition’ – How do
Altogether 19 people attended. Happily          services and funding change between
the weather was very good and everyone          children and adult care? Will continuity
sat outside in the large, walled garden,        of care be lost? What is the process to
with the more active children able to go        go through to ensure there will be
off and around and enjoy the various            continuity and the appropriate services
things there like the trampoline, slide,        available? It was agreed that this was an
and toboggan run, whilst parents talked         area where valuable advice could be
together. Some had visited before in            provided by contacting the RETT UK
previous years and some were new, but           head office with their concerns.
all enjoyed getting to know others and          Many thanks Michael and Wendy for
sharing their concerns, and offering            your continued support in holding this
advice where they could. The afternoon          annual event in your home.

Families enjoying the afternoon

North London
Support Group Picnic
by Lorna Jaffa

                                            This year we met on 7th July. We decided to
                                            hold a picnic instead of the usual BBQ. Everyone
                                            brought their own food and it allowed more time
                                            to talk to each other.
                                            35 people attended from 11 different families.
                                            The main purpose of the support group is to
                                            help each other with our collective experiences
                                            and knowledge. Chairs were set out in a huge
Adriana Peillajo and dad, Nelson            circle to aid opportunities to chat.
                                            One example of helping each other was when
                                            one family said, that although the local authority
                                            had given respite care for a fixed number of days
                                            per year, they were unable to provide a place for
                                            any days at all. This is really unacceptable and
                                            despite representations no place was found.
                                            Another family had a good placement for their
                                            daughter outside the borough. The first family
                                            left armed with the details and the hope is that
Minati Das and Asma Bukari                  there will be successful respite care very soon.
                                            The gatherings are informal and lots of
                                            information is exchanged and friendships made.
                                            We were pleased to welcome for the first time
                                            the Inge family, who have moved to London.
                                            Adriana, age 24, came to the picnic with her
                                            mum, dad and brother.
                                            The venue was Mapledown School, thanks once
                                            again to the kindness of Steve Carroll, the
Kerry Henderson and Ieuan’s mum Ann Maria   Headteacher, The wonderful selection of adapted
                                            bicycles are always well used and the zip wire
                                            was enjoyed by people with Rett, sibling and
                                            their parents!
                                            Unfortunately Jessica Campbell and her family
                                            were unable to attend as Jessica’s birthday party
                                            was at the same time. We were also delighted to
                                            see Erika and Katie Symes as this will be their
                                            last Rett gathering before they relocate to
                                            Switzerland. We wish them both good health
Gabriella Bardon enjoys the zip wire        and happiness in their new life there.

HELP SUPPORT US TO HELP SUPPORT YOU                              RETT NEWS · ISSUE TWO/201 9 · PAGE 17
Rett UK Clinics Survey

Many thanks to everyone who                 • 58% of respondents were told who
completed our clinic survey.                  would be in attendance

The clinics are held at The Evelina         • Two respondents were not aware or
                                              asked at the time whether they
Children’s Hospital, London (twice a
                                              wanted a member of Rett UK present
month, under 19’s), The Nottingham City
Hospital (twice yearly, under 19’s), The    • 75% of respondents were given
Royal Manchester Children’s Hospital,         information about how to get there,
(twice yearly, adults only – despite it       parking etc.
being a children’s hospital) and St David’s • 80% of the time someone from Rett UK
Hospital, Cardiff (twice yearly, normally     was in the meeting which the large
just adults).                                 majority of families found really helpful
We had 60 responses.
                                              Felt at ease with a familiar friendly
Clinic respondents attended:                  face and was directed and informed
• 61% The Evelina Clinic                      by Julie.
• 15% Nottingham                              Great to have Becky there as she
• 12% Manchester                              could offer support and signpost
                                              us to services. Also, she was able
• 12% Cardiff                                 to offer her own experiences with
Number of times respondents                   her daughter.
were seen:                                    Just felt reassured that someone was
• 55% only once                               there that understood what our
• 20% twice                                   daughter was about and how things
                                              was for us as a family.
• 25% more than twice
How long did people have to                 Who else was present?
wait for the appointment?                   • Neurologist 48%
• 22% less than six months                  • Physiotherapist 69%
• 42% between 3 & 6 months                  • Speech & Language Therapist 59%
• 19% more than 6 months                    • Occupational Therapist 60%
• 17% were not sure                         • Geneticist 15%
Information given prior to                  • Dietician 1%
the appointment:                            How many people got reports
• Information given prior to the 		         after the clinic?
  appointment varied with only 42%          84% of respondents did get a report
  being given a pre-clinic questionnaire    after the clinic.

What did people get out of the clinic?   It was also suggested by a couple of
Most people found the clinic appointment families that it may be helpful for Rett UK
very helpful.                            to hold a less formal meeting just with
                                         the family outside of the clinic meeting
 As a result we have made so much        to discuss general support issues.
 progress with significant problems …
 we are now coming to London to see        There were a lot of professionals in the
 a spinal expert and getting help around   meeting which could be overwhelming.
 phobias … also support around O2          I wonder if Rett UK could run their
 levels and sleep and breathing - I        own advice/information clinic in
 cannot say how life changing this         adjacent to the Rett clinic so before
 session has been and to know there        or after the appointment you could
 are experts that really understand the    discuss worries and concerns in a
 big picture. Thank you. x                 more informal way. The Rett UK
                                           representative could then feed this
 The team were all very helpful and        back to the medical team if appropriate
 gave great advice and support.            or provide advocacy support during
 It is so important to us as they know     the clinic if a family thought this
 so much about Rett Syndrome where         would be useful. This would also be a
 other people have not a great deal of     better time to give information about
 knowledge if any it’s very reassuring     support from Rett UK as opposed to
 to have a specialist who can get          in the meeting itself.
 things done.
 Rett UK explain things well and in         As a result, our recommendations to
 layman’s terms rather than just in         the clinic teams and for our review are:
 medical jargon. They also add in things    • That everyone attending any of the
 that we as parents may forget to ask.        clinics is given information beforehand
                                              about how to get there, parking, who
But not everyone got the follow up            will be in attendance and what to
report or found that advice given at          expect from the meeting
the clinic was taken up by the local        • Everyone will know that a member of
teams. They then found it hard to get         Rett UK will be present (unless holidays
the recommendations implemented.              or absences prohibit this) but they
                                              only sit in the clinic meeting if the
 The clinic staff were nice and reassured     family want them to
 us about what we were doing, however,      • All families are given a pre-clinic
 there was nothing they could really          questionnaire to complete and return
 help with in terms of symptoms that          to the clinic team prior to the meeting.
 were not being addressed.                    This is important not only to prepare
 Report after the visit was too brief         the clinic team about what the current
 and nothing was taken into                   issues are but for the family to focus
 consideration from professionals             on what they want to ask. This is only
 towards EHCP. Parents were asked to          shared with Rett UK if permission is
 ask questions, but it was too                given on the pre-clinic questionnaire
 overwhelming at that stage and we
 were not sure on what to ask.
                                                                 Continued overleaf 

• That everyone receives a
  report afterwards with the           NHS ENGLAND
  recommendations from the
  clinic team, which is they           ALERT CARDS
  shared with the family’s local
  team for implementation. The         Can you help?
  report can be shared with            NHS England have announced plans to
  Rett UK if the family give           give every patient with a rare disease an
  permission to do so and Rett         alert card, which would include information
  UK can help to see that those        about their condition, treatment regime
  recommendations are                  and contact details for the individual
  followed up. Rett UK can refer       expert involved in their care.
  back to the clinic team if they
                                       “We know that many patient organisations
  are not been put into place
                                       have had experience of developing and
  by the family’s local team
                                       implement alert cards within their own
• That every effort should be          community. In order to improve the
  made to have a full 		               service offered by NHS England, we are
  multidisciplinary team               looking to collect information on your
  present at each of the clinics       previous experiences of alert cards, what
We would like to see some of           their successes have been and what could
the clinics running more often         have been done better. We will then feed
and also to have a clinic in           this back to NHS England to ensure they
Scotland. Each                         develop a service that works for both
clinic should                          families and individuals living with a rare
also have its                          condition and medical professionals.”
own                                    If you have had experience of using an
information                            alert card or have any thoughts on what
leaflet. We are                        they should contain, please email
working on all               
of these things.                       detailing the following:
We will do                             1 The format of your alert card. Is this a
another                                  credit card size information leaflet, a
review in                                bracelet with a USB attachment, an A4
12 months                                pamphlet etc.
to see
                                       2 Was there any particular problem you
what has
                                         were trying solve with your alert card?
Many                                   3 The experiences of using the alert card.
thanks to                                What has worked well?
everyone                               4 Any improvements you would make
who helped                               with the benefit of hindsight?
with the review.                       5 Any broader comments you would
                                         make about NHS England’s plans?

Other People’s Reactions                                      Improving emotional
                                                              resilience and
                                                              empowering families

Some people react in strange ways the first time they meet someone with a
disability, because it’s new to them and they don’t know what to do. Most people
will be surprised by their own reactions.
Some people will:
• Stare
• Be shocked, confused, unsure or afraid
• Curious
• Ignore the child/adult with a disability
• Offer to help you or the child/adult with a disability
• Avoid you
All of these reactions can make you and the person with a disability feel uncomfortable.
It can be confronting and confusing for all involved. Some parents end up seeing
less of their friends or family because of their reactions to a child/adults’ disability.
How you feel about other people’s reactions can be changeable depending on
how you are feeling or what’s happening in your life. Sometimes other people’s
well-meaning questions are preferable to a stare, other times you might feel that
strangers shouldn’t be so rude.

As well as the child who has a disability, • Ignore and block out: There are times
other people may be affected by the          where it just feels too hard to say or
reactions of others including parents,       do anything, At times like this try to
other carers, brothers and sisters, friends  think of something else – your
and other family members.                    favourite TV programme, a poem,
Someone’s reaction can happen at             what’s for dinner tonight anything
school, at the shops, at public events,      that would help take your mind off it
within family or friends’ homes, in fact      • Walk away: If you find people are being
anywhere you may be meeting new                 extremely difficult or you are finding it
people.                                         hard to control your emotions, you may
                                                prefer once in a while to walk away
Coping strategies
                                              • Positive Body language: This helps
Different situations call for different
                                                communicate your message, so make
measures but here are some coping
                                                eye contact, smile, stand upright with
strategies that other families find useful:
                                                your shoulders back and head held
• Reassurance: A smile or nod to                high. A calm and controlled voice and
  acknowledge someone is often                  a few expressive hand movements can
  enough to break an uncomfortable              also make a difference
  stare. It gives off the message
                                          Having something to say or do allows you
  “we’re ok”
                                          to respond to other people’s questions,
• Distraction: Distract the other person. comments and curiosity. It also provides
  Chat about your child/adult (but not    role models and demonstrates (especially
  about their disability) or talk about   to children), that other peoples’ reactions
  something you have in common            can be managed which is very positive.
• Explain: This can both reassure and
                                          Finding support:
  educate other people. They may react
  differently and more positively in the Different support may be needed at
  future and it can be a helpful way to   different times in you and your child/
  dispel assumptions people may make adults’ life. There is nothing wrong with
  about your child based on their         seeking support – in fact it enables people
  appearance or behaviour. Keep an        to cope better. Talking to a friend or support
  explanation short and simple e.g.       group worker and meeting other families
  “Sally was born with Rett syndrome      with similar experiences can help ease
  which is why she is in a wheelchair/is worries and isolation. It can also be helpful
  short for her age/sometimes dribbles.” for siblings to meet other children who have
  You can move the conversation on by a sister or brother who has Rett syndrome.
  then talking about something else           Siblings:
• Use humour: Humour can break                It is important that brothers and sisters
  tension and put people at ease. It can      have an understanding of their sibling’s
  be a useful tool if people are making       medical condition as they may need to
  inappropriate comments e.g. “Gosh           explain to friends and peers, especially
  thank you we hadn’t noticed.”               if they get asked questions or other
• Be assertive: Stand up for yourself         children make comments. A child’s
  without being aggressive e.g. “My           disability should never become a taboo
  daughter has Rett syndrome and              subject within a family as this gives off
  you staring at us doesn’t help.” then       unhelpful messages and can foster
  move away                                   unnecessary worries and concerns.

Sounds overwhelming… how do I start?
Take things one step at a time:             RADAR
• Think of a time when you have
  responded the way you wanted to
  with another person’s reaction            The National Key Scheme (NKS)
                                            offers disabled people independent
• Go easy on yourself; take each day as
                                            access to locked public toilets
  it comes
                                            around the country. Toilets fitted
• Practise something you’d like to say in   with National Key Scheme (NKS)
  front of a mirror or in the shower        locks can now be found in shopping
  where no one can hear you                 centres, pubs, cafés, department
• Some suggestions will work better for     stores, bus and train stations and
  you than others. It sometimes             many other locations in most
  takes a while to find what works best     parts of the country.
  for you in different situations           For further information about the
• Carry some small cards that have          scheme, please visit
  a brief explanation. Rett UK    
  have some generic ones                    shop/official-and-only-genuine-
  you might like to use so                  radar-key
  please contact us if you                  Please note: Although there is
  would like some. Should                   some variation to keys in some of
  you choose not to respond                 the changing place toilets in
  verbally to a stare or                    particular with which system they
  question, you can give                    use – a few are radar keys but
  someone a card instead.                   others where you need to collect
  It might read something                   a key from someone and others
  like this “Rebecca has Rett               where you need to register as a
  Syndrome which is why                     user via the council who then
  she looks and behaves a                   send a key or access code.
  little differently to you and
  I. Next time you see us why
  not smile and say hello.”
Managing other people’s
reactions can be difficult but
we have a choice in how to
deal with it. In the long term,
positive attitudes, good
communication skills and
caring and supportive friends,
families, support groups and
health professionals are the
best aids to coping with life.
Please contact us on
01582 798 910 and speak
to one of the support team
if you would to talk any of
this through.

Congratulations to
Dr Gillian Townend on
her Academic Success

                                          On 4th July Dr Gill Townend was awarded her
                                          PhD following the successful defence of her
                                          thesis at Maastricht University, in front of an
                                          academic assessment panel and an audience of
                                          around 60 colleagues, friends and members of
                                          her family. Callie Ward and Abigail Davison-Hoult
                                          were there to cheer her on, on behalf of Rett UK,
                                          and enjoyed getting to know some of the
                                          families from the NRSV (Dutch Rett Syndrome
                                          Association) at the defence and reception and
                                          the party in the evening, as well as meeting with
                                          Gill and her Dutch colleagues in a warm and sunny
                                          Maastricht the following morning to discuss ideas
                                          for future collaborations.
                                          Gill’s thesis is entitled Rett syndrome:
                                          understanding the communication challenges,
                                          needs and potential of individuals living with a
                                          rare disease and is the culmination of her
                                          research from the past five years, while working
                                          at the Rett Expertise Centre Netherlands. The
                                          293-page thesis is available as a free download
                                          from the University of Maastricht, using the
                                          following link:

Top left: Gill giving her presentation at the start of the defence; Below: Gill with colleagues from the
Rett Expertise Centre Netherlands, the NRSV (Dutch Rett Syndrome Association) and Stichting-Terre
(Dutch Rett Syndrome Foundation). Also Caroline Lietaer from Rett Syndrome Europe and Dr Anne-Marie
Bisgaard from the Danish Rett Expertise Centre

RETT NEWS · ISSUE TWO/2019 · PAGE 24                              HELP SUPPORT US TO HELP SUPPORT YOU
                                                        OUR MONTHLY
                                                          Keep up-to-date
                                                           with the latest
                                                        research news from
                                                         around the world
                                                            Subscribe free to our
                                                        monthly E-Newsletter via our
                                                       website and direct to your inbox
                                                            when it is published.
Gill, Callie and Abigail and the big certificate!
                                                         Full of information on support,
                                                       fundraising and events that might
                                                        be of interest, we hope that the
                                                        E-Newsletter will be a good way
                                                          for you to remain up-to-date.
                                                             Information will have
                                                         hypertext links through which
                                                       you can find out more or read the
                                                                  full content.
                                                           As with all our services,
                                                          we welcome feedback and
                                                           any ideas you have for
Gill with her PhD supervisors, Prof Dr Leopold Curfs            future issues.
(Maastricht University, NL) and Dr Peter Marschik
(Medical University of Graz, Austria)                               Sign up at
For anyone preferring a shorter read, Gill        
is producing a short booklet giving an
overview of the thesis and this will soon
be available to
download from the
Rett UK website,
together with a                                                  E-NEWS
video of Gill giving
a 15-minute slide
summarising her
thesis at the start
of the hour-long

Gill’s PhD thesis

Rett UK Communication                                             Maximising the

and Education Support                                             communication
                                                                  potential of people
Update                                                            with Rett syndrome
by Dr Gill Townend and Callie Ward

As Rett UK’s Communication and                    families have the opportunity either to
Education Support Team we are                     (1) try out a communication device, for
continuing to make great strides in all           example, eye gaze technology, which
we are doing. Here is a snapshot of               they can take away on loan, or (2) bring
events we have organised in the last              their own communication device if they
few months and those that are                     have questions and need support. In
planned for the rest of the year:                 some cases, these devices have been
                                                  used for playing games without families
Two Day Communication Training                    realising that language systems are on
Two-day communication training                    there. Being able to show them the
(AAC – Alternative and Augmentative               language systems and how to use them
Communication) events were run                    has opened up a world of communication
successfully in Chichester in May and in          they didn’t realise they already had access
Cardiff in July. It was exciting to see           to on their device.
both adults and children with Rett
                                                  The remaining two-day Communication
syndrome make progress in learning to
                                                  Training (AAC) events are:
use alternative methods of communication.
These events aim to train up parents,             SCOTLAND
carers and professionals during Day 1,            Stirling
with Day 2 offering communication                 19th and 20th September
groups for the person with Rett
syndrome to attend along with their
                                                  Herts, Beds & Bucks
family members/carers/professionals.
                                                  28th and 29th November
During Day 2 the individuals and their

Practising Communication – West Sussex Training

The RCC training weekend; Inset: A sweet treat from Abigail

Regional Communication Events            Tobii Dynavox – who all led workshops
In recent months, Regional               on their eye gaze devices, software and
Communication Support ‘Coffee and        language programmes. The weekend
Chat’ sessions and ‘Out and About’       included a challenging AAC lunch at a
Communication groups have been held      local café where all of the RCCs and
in the London/Essex, Midlands and        workshop leaders communicated by
Herts, Beds & Bucks regions.             using eye gaze devices and other AAC
As a team we are continuing to expand techniques such as partner assisted
our network of Regional Communication scanning throughout the lunch – to talk
Champions (RCCs) to support these        through the menu options, choose and
events and in June the first residential order lunch and to chat. A real ‘eye-
training weekend for RCCs was held at    opening’ experience for us all.
the Old Palace Lodge in Dunstable. The Following on from the RCC training
Old Palace Lodge staff were extremely    weekend, we are delighted to be
welcoming and hospitable, and the        starting up new regions with upcoming
weekend was a great success. Callie and Communication Support ‘Coffee and
Gill led the training and were joined on Chat’ sessions and ‘Out and About’
Saturday by advisors from three          Communication groups planned for
communication aid companies – Mark       Kent/Sussex, Berkshire/Surrey, North
Street from Liberator, Daisy Clay from   East and Scotland, as well as the
Smartbox and Jeniffer De Almeida from existing regions.

HELP SUPPORT US TO HELP SUPPORT YOU                           RETT NEWS · ISSUE TWO/201 9 · PAGE 27
Future Dates:                                 at bowling alleys, museum, or even
                                              farms. If you know somewhere you like
Communication Support                         to go, let us know. We are always open
‘Coffee and Chat’ Sessions                    to suggestions.
These are designed as a space for             It doesn’t matter where you are with
parents and carers to talk together and       your communication (AAC) journey –
get support for using the different           whether you are new to this or more
communication methods they may need           experienced. This is a great opportunity
for the person with Rett syndrome they        to meet others and have fun together.
are supporting. Some people may be
completely new to all of this, others may     OCTOBER
be further along their journey. The ‘Coffee   Berkshire/Surrey
and Chat’ sessions are a chance to ask        5th October
your questions! They are usually held in
friendly garden centre café settings.         surreyoutandabout
This event is not designed for the
person with Rett syndrome. There are          London/Essex
separate ‘Out and About’ Communication        6th October
groups for them to attend and to    
practise communication.                       essexoutandabout

SEPTEMBER                                     Kent/Sussex
Kent/Sussex                                   9th October
11th September                                           Scotland
                                              18th October
Herts, Beds & Bucks                 
16th September           North East
                                              19th October
20th September                Midlands
                                              27th October
25th September           For booking onto these events and
                                      more information on upcoming
                                      Communication Training days (AAC),
26th September
                                      ‘Out and About’ Communication
                                      Groups and ‘Coffee and Chat’ sessions
                                      keep an eye on the Rett UK Facebook
‘Out and About’ Communication Groups page as well as the Rett UK website
Come along with the person with Rett  events page
syndrome you support to practise      and use the ‘communication’ filter. You
communicating in real life situations can also call the Rett UK office and the
with other people who also understand support team will help you to book a
These ‘out and about’ groups may be   place 01582 798 910.

Network for Speech and
Language Therapists                                      Sharing good
Working with People
with Rett Syndrome
Following the launch of our UK-wide
Network in November 2018, there have       About the Network
been three webinars so far in 2019:
                                           This network is for all SLTs/SLT
MARCH 2019                                 assistants who work with children
A parent’s perspective on implementing     and/or adults with Rett syndrome,
AAC (with Abigail Davison-Hoult and        in any setting, with any level of
Dr Gill Townend).                          experience, in any region of the UK.

MAY 2019
Assessing language and cognitive skills
                                           Sign Up
of people with Rett syndrome, Part One     Sign-up for the webinars to find out
(with Callie Ward and Dr Gill Townend).    more about ways of working with
                                           and addressing the communication
JUNE 2019
                                           challenges (and communication
Assessing language and cognitive skills
                                           potential) that are associated with
of people with Rett syndrome, Part Two
                                           Rett syndrome.
(with Callie Ward and Dr Gill Townend).
                                           If you can’t attend a ‘live’ webinar,
                                           no need to miss out – simply sign up
Further webinars and North/South           to receive a link to the recording.
study days are planned for Autumn
                                           Come along to the study days for
2019, including a guest webinar given by
                                           presentations of the latest research
Jennifer McComas from the USA.
                                           and discussion of case studies.
                                           Find out about the new international
                                           communication guidelines for
                                           Rett syndrome.
                                           Fill in the registration form and we
                                           will add you to our mailing list to
                                           keep you updated about future events.

                                           For more information and to join the
     MEMBERSHIP                            network, please visit
       IS FREE!

Research Update

GW Research initiates a clinical trial of cannabidiol in
Rett Syndrome
GWP42003-P (cannabidiol) is believed to affect several pharmacological pathways
and may have the potential to modulate some of the pathophysiological mechanisms
thought to underlie the neurobehavioral deficits present in Rett syndrome including
excitatory/inhibitory neuronal imbalance, neuroinflammation and antioxidant
dysfunction. The aim of the clinical trial is to evaluate the safety and efficacy of
GWP42003-P in reducing symptom severity in females, aged 4 to 18 years, with
Rett syndrome. Symptom severity will be evaluated using caregiver and clinician
measures that assess multiple symptoms and therefore reflect the overall condition.
Measuring changes in seizures frequency or severity is not, per se, a key objective
of the trial. Several safety outcomes such as side effects, vital signs, lab assessments
and tests will be analysed.
The effect of two doses will be compared with a placebo control across a 24-week
treatment period. Patients completing the study will have the opportunity to take
part in a 6-month extension study where all patients will receive GWP42003-P. In
total, approximately 252 patients are expected to be included.
One of the eligibility requirements is for patients to refrain from taking medicinal
cannabis, cannabinoid-based medications or cannabidiol oral solutions for at least
3 months prior to screening in the study. The full list of eligibility criteria can be
found on [ Identifier: NCT03848832].
UK trial sites in Liverpool and in London are expected to open in June and July
2019 respectively.
For further information, please contact Reverse Rett:
Tel: 0161 434 0585
In early October 2018, it was reported that 70% of those involved (from around
100 patients) experienced clinically significant improvements in their apneas.

             H         OH


Myths about                                                   Increasing
Rett Syndrome                                                 knowledge and
                                                              understanding of
                                                              Rett syndrome

                                      Dr Daniel Lumsden presenting at
                                      The Managing Complex Neurological
                                      Disorders in the Community conference
                                      in Birmingham.
                                      Dr Daniel Lumsden is a Consultant Paediatric
                                      Neurologist, Guy’s and St Thomas’ NHS
                                      Foundation Trust and Paediatric Neurosciences,
                                      as well as at the Faculty of Life Sciences and
                                      Medicine, King’s College, London.
                                  Dr Lumsden works at the Evelina London Children’s
                                  Hospital (ELCH) and is the current Chair of the
                                  Movement Disorder Specialist Interest Group of
                                  the British Paediatric Neurology Association.
                                  Daniel’s clinical and research work has focussed
                                  on the management of movement disorders in
                                  childhood. He is one of three Consultants in the
                                  Complex Motor Disorder Service at the ELCH
Dr Daniel Lumsden                 which provides a national referral service for
Deep Brain Stimulation in Childhood and is also the clinical lead for the Rett
Service at the ELCH. Daniel has a particular interest in improving the recognition of
movement disorders in children and has taught widely on this topic.
The topic of his presentation was to bust some of the myths about Rett syndrome.
We are pleased to be able to share with you a brief synopsis of this presentation,
and the full version will be available via our website shortly.

                                             We have made some changes to our
                                             website to help you find things more
                                             easily. We have removed the membership
                                             section so you no longer have to log in
                                             to view certain things e.g. presentations
      VISIT OUR WEBSITE AND                  from Regional Roadshows and back
      SEE WHAT HAS CHANGED                   issues of Rett News.
                                             Why not take a look!

Rett syndrome = Mutation in the MECP2 Gene
A mutation in MECP2 is insufficient for diagnosis of Rett syndrome.
A period of regression followed by stabilisation is mandatory. Deceleration in head
growth should alert a clinician to possibility of diagnosis.

  Clinical Diagnosis
  Required for typical or classic RTT:
  • Period of regression followed by recovery or stabilisation
  • All main criteria and all exclusion criteria
  • Supportive criteria are not required, although often present in typical RTT
  Required for atypical or variant RTT:
  • Period of regression followed by recovery or stabilisation
  • At least 2 of the 4 main criteria
  • 5 out of 11 supportive criteria

  Main Criteria                                    Supportive Criteria for Atypical RTT
  1.   Partial or complete loss of 		              1.   Breathing disturbances
       acquired purposeful hand skills.                 when awake
  2. Partial or complete loss of 		                2. Bruxism when awake
     acquired spoken language.                     3. Impaired sleep pattern
  3. Gait abnormalities; impaired 		               4. Abnormal muscle tone
     (dyspraxia) or absence of ability.
                                                   5. Peripheral vasomotor disturbances
  4. Stereotypic hand movements such
                                                   6. Scoliosis/kyphosis
     as hand wringing/squeezing,
     clapping/tapping, mouthing and                7. Growth retardation
     washing/rubbing automatisms.                  8. Inappropriate laughing/
                                                      screaming spells
                                                   10. Diminished response to pain
                                                   11. Intense eye communication –
                                                       “eye pointing”

  Don’t forget!
  If you move home, change your phone
  number or email address, please notify
  us by emailing
  Thank you!

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