NOVEMBER IS EPILEPSY AWARENESS MONTH! - Join the Seizure First Aid Challenge - Epilepsy Foundation
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EDUCATION
ADVOCACY
EMPOWERMENT
Volume 15 Issue 2 Autumn 2020
NOVEMBER IS EPILEPSY AWARENESS MONTH!
Join the
Seizure First Aid Challenge
Looking to support the epilepsy cause during National
Epilepsy Awareness Month (NEAM) this November? Join
the Epilepsy Foundation’s Seizure First Aid Challenge and
get certified in Seizure First Aid. The Epilepsy Foundation
recently launched the first and only Seizure Recognition
and First Aid certification training to support the 3.4 million
people in the U.S. living with epilepsy. The free Seizure
Recognition and First Aid certification training provides
information to increase the knowledge, skills and confidence
in recognizing seizures and safely administering seizure first
aid. The certification training, led by Epilepsy Foundation-
certified instructors, is available through live webinars
scheduled between now and November 30. Help us reach
our goal of training 2,020 people during NEAM nationwide.
To register for a training, please visit epilepsy.com/FirstAid.
2020 Virtual Epilepsy Family Conference
We are kicking off
Epilepsy Awareness Month with our annual
Epilepsy Family Conference!
WEDNESDAY, NOVEMBER 4th
VIRTUAL ON ZOOM | FREE TO REGISTER
Visit http://bit.ly/EFNENYFamilyConference2020
to register TODAY
Did you miss our October e-newsletter?
In it, we highlighted each of this year’s speakers
so you can learn more about them and their topic
ahead of time. If you need a copy, contact
Darcy at dbelow@epilepsyneny.org.
From the Executive Director’s Desk
Our Mission A Message from Jeannine Garab
jgarab@epilepsyneny.org 518.456.7501 - Ext: 106
The mission of the Epilepsy
Foundation is to lead the fight to
overcome the challenges of living Dear Friends,
with epilepsy and to accelerate
therapies to stop seizures, find I hope that this letter finds you safe during this
cures, and save lives. unprecedented health crisis. I am pleased to
let you know that the Epilepsy Foundation is
ctors continuing to serve the needs of people with
EFNENY Board of Directors epilepsy, and provide support to caregivers, even
as the pandemic continues to impact our daily
Jerilee Beaudoin, President lives. In the face of challenging times, we will not
The Arc of Rensselaer County stop helping those in need.
Denise Sullivan, Vice President We are so excited to be able to again provide a
newsletter in print as we celebrate November,
which is National Epilepsy Awareness Month.
This is our first print newsletter since March.
Carole Plant, Treasurer However, we have been distributing a monthly
Auto / Mate, Inc.
online newsletter which is sent out to our email
distribution list on the first day of every month. If you are not receiving this
Lynne Longtin, RN, DNP monthly communication, please email Darcy at: dbelow@epilepsyneny.org
Secretary to make sure we have your correct email address.
SUNY Polytechnic Institute
Over the past several months, we have continued all of the programs that
Kevin Volk, you have come to know us for, including Information and Referral, Service
Immediate Past President Coordination, Counseling, Support Groups, Advocacy and Professional In-
Retired - New York State Senate
service Training. In addition, we have pivoted many of our programs to be
accessible in our new virtual world. Our monthly support groups are held
over the phone, and our art therapy class is being held on Zoom. All of our
Craig Anderson programs welcome new participants at any time. Please reach out for more
Bond, Schoeneck & King, PLLC information.
Ashley Biggs We are excited about our upcoming conference, which will be held virtually
LivaNova, PLC on Wednesday, November 4th. We have a great lineup of speakers (see
more details on the front cover), and you can participate from the comfort of
Melissa D’Andrea your home or office. Also, there is no charge this year, thanks to the generous
Oracle support of our sponsors including: AbbVie, SK Life Sciences, Neurelis, and
Greenwich Biosciences.
Shelley Friel We are also excited about a brand new program that we will be offering
Rockefeller College called PACES (Program of Active Consumer Engagement in Epilepsy Self-
Management). The goal of PACES is to increase the medical, psychosocial,
Michelle Hebert and community adjustment of adults with active seizures. The program
School Administrators Association of NYS includes an education component, assistance with coping strategy
development and goal setting. Participants can join virtually from the comfort
Harriet Kang, MD of their home or office. Please see Page 5 for more information. Participation
Mount Sinai School of Medicine in each group is limited, and pre-registration is required.
We look forward to meeting your needs in the days ahead. We wish all of
H. Michael Okby you a Happy Thanksgiving, and hope that you and your loved ones remain
Morgan Stanley healthy during these trying times.
Catharine Potvin Sincerely,
Stragility, LLC
Rusty Senecal
Ellis Hospital Jeannine S. Garab
Executive Director
Christopher Shelanskey
National Grid
Gerald Silverman Special Announcement
Retired - Bloomberg BNA Our beloved newsletter is now available digitally!
Karen Wachs In order to keep you up to date on new developments in epilepsy, as
Greenwich Biosciences well as local and national events and programs, we began distributing a
monthly online newsletter as of April 2020. If you haven’t been receiving
Nicholas Zarrelli the newsletter and would like to, please send your email address to
Saratoga National Bank & Trust Company Darcy at: dbelow@epilepsyneny.org
- Page 2 -
Celebrating Achievements
We are excited to celebrate milestone achievements of several of our staff
in 2020. If this were a typical year, we would be recognizing each of these
individuals at our annual awards dinner. However, 2020 has been anything but
typical. In the absence of our annual awards dinner, we recognize their service
here, and thank them for their daily contributions to our great organization.
These individuals are on the front lines every day. They are answering your
phone calls, raising money to support our programs and services, assisting
people with epilepsy to lead the best life possible, and educating our community
to raise awareness of epilepsy. Please join me as we congratulate the following: Serving all people with
epilepsy in the Capital
Region, North Country
Jenny Guerette and Upper Hudson Valley
Director of Medicaid Programs and Waiver Services Albany, Clinton, Columbia,
25 Years of Service Dutchess, Essex, Franklin,
Fulton, Greene, Hamilton,
Herkimer, Jefferson, Lewis,
Montgomery, Rensselaer, St.
Darcy Below Lawrence, Saratoga, Schenectady,
Office Manager Schoharie, Sullivan, Ulster,
15 Years of Service Warren, and Washington counties.
EFNENY Staff
Susan Kaczynski Darcy Below
Director of Development Office Manager
15 Years of Service
Mary Beth Champagne
Accounting & Human Resource
Administrator
Jeff Riccio
TBI Service Coordinator Erica DeNicola-Scher, MS
Director of Community Education
10 Years of Service & Advocacy Coordinator
Jeannine Garab
Executive Director
Aaron Kent
TBI Service Coordinator Jenny Guerette, MSEd
5 Years of Service Director of Medicaid Programs
& Waiver Services
Susan Kaczynski
Director of Development
Erica DeNicola-Scher
Director of Community Education and Aaron Kent, MSEd
Advocacy Coordinator TBI Service Coordinator
5 Years of Service
Lori Kidd, BSW
Director of Information, Referral
& Special Projects
News From the Board of Directors
The Board of Directors is pleased to welcome Ashley Biggs. Ashley is a Katelyn Markellos
Marketing, Communications &
Traveling VNS Medical Device Sales Consultant for Liva Nova. Ashley is Special Events Coordinator
looking forward to increasing the awareness of epilepsy in our community,
and becoming involved in our many events. She looks forward to joining
the board development committee as well as assisting with our Walk to END Jodi Radler, MS
Counselor
EPILEPSY.
The Epilepsy Foundation would also like to recognize the following board Jeff Riccio, MSEd
members who are celebrating milestone years of service on our Board TBI Service Coordinator
of Directors. We thank each of them for their many contributions to our
organization.
Diana Voss
Lynne Longtin 5 Years of Service Carole Plant 5 Years of Service Administrative Assistant
Jerry Silverman 5 Years of Service Kevin Volk 10 Years of Service
- Page 3 -
Education ONLINE! Community Educator’s Corner
Erica DeNicola-Scher, MS
We hope you are keeping up Director of Community Education & Advocacy Coordinator
with our online education efforts! edenicola-scher@epilepsyneny.org 518.456.7501 - Ext: 107
Parents, Teachers and
TEACHING Other School Personnel:
TUESDAY
WE NEED YOUR HELP!
Visit our Facebook page every
Tuesday for a new fact about
epilepsy and seizures!
During the fall semester 2020, we want to find
out whether or not our education programs
for students in grades K-12 are as effective for
TEACHING TUESDAY learning about epilepsy when conducted virtually.
Visit our Facebook page every We are asking parents and schools to invite us in
Tuesday for a new fact about to classrooms to teach students about epilepsy,
epilepsy and seizures! so we can pilot and evaluate our programs on
virtual platforms! This will also help us reach our
education goals (# of students taught) for 2020.
November is National Epilepsy Awareness Month, and GREAT timing for
student education in schools on epilepsy and seizure first aid!
For more information or to request a program, please contact our Director
of Community Education, Erica at edenicola-scher@epilepsyneny.org or
518.456.7501.
WEBINAR WEDNESDAY
Join us on the FIRST Wednesday PAB Webinar Series
of each month from 3-4 PM for
a FREE live webinar training on DID YOU MISS ANY OF OUR 2020 WEBINARS?
the basics of epilepsy, seizure Recordings are available! Please note: all URLs are case-sensitive
recognition, and seizure first
aid! This training is for general Women With Epilepsy | Marianna Spanaki-Varelas, MD, PhD, FAES
audiences, so anyone and URL: http://bit.ly/WomenWithEpilepsy-Recording
everyone who is interested in
learning more about epilepsy and Safety in Patients with Seizures | John Pugh, MD, PhD
seizure recognition and first aid URL: http://bit.ly/SeizureSafety-Recording
can tune in! Register at:
bit.ly/FNENYWebinarWednesday.
Kids in School:
Neurocognitive & Neurobehavioral Effects of Epilepsy | Andrew Hess, PhD
URL: http://bit.ly/KidsInSchool-Recording
Financial Planning and Special Needs Trusts |
William Van Evera, CHSNC, CHFC, CLU
Recording available upon request; please email Erica at
edenicola-scher@epilepsyneny.org.
THURSDAY TRIVIA! This activity will be back in 2021 with additional topics from our
Test your epilepsy and seizure PAB members and local experts!
knowledge each Thursday by
visiting our Facebook page
and answering our weekly
trivia question! The answer and
Did You Know?
explanation will be revealed
each Thursday around 4 PM!
FRIDAY READING DAYS
are on pause until the next school
recess! Keep an eye out for
announcements about its return
on our social media pages.
- Page 4 -
Two Exciting New Projects
SIGN-UP NOW!
PROGRAM OF PROJECT UPLIFT:
PROGRAM OF Using Practice and
ACTIVE CONSUMER
ACTIVE CONSUMER Learning to Increase
ENGAGEMENT IN
ENGAGEMENT IN EPILEPSY
EPILEPSY Favorable Thoughts
SELF-MANAGEMENT
WHAT IS PACES?
THE GOAL PACES is an eight-session epilepsy self-management program developed with direct
The goals of PACES is to increase input from adults with epilepsy at the University of Washington Epilepsy Center/ Health
THE GOAL:
the medical, psychosocial, and
Promotion Research Center and subject to randomized control evaluation with funding
WHAT IS PACES?
Thecommunity
goal of PACES is to from the Centers for Disease Control (CDC).
adjustment of adults PACES is an eight-session epilepsy
increase
with active the
seizuremedical,
conditions. self-management program developed
psychosocial and community PACES DEVELOPMENT
with direct input from adults with
adjustment of adults with PACES wasepilepsy developed throughat the University of Washington
8 SESSIONS
active seizure conditions.COVER Seattle epilepsy Epilepsy
an extensive
centers. The responseCenter
survey of 225 adults recruited
/ Health
rate was high
across two
Promotion
(61%) with strong response reli-
WHAT IS PROJECT UPLIFT?
THE FOLLOWING ability. RespondentsResearch
identified their mostCenter and concerns
important adjustment subject and alsoto
program elements that were important to them (viz., number and length of sessions,
the
Project UPLIFT teaches participants
randomized control evaluation with
TOPICS:
8 SESSIONS
delivery modality, intervention approach, leadership, session schedule, etc.). Based
COVERupon the prevalent
funding from
responses related the Centers
to depression for Disease
and attention/memory concerns,
skills for managing and improving
their mental health and
THE FOLLOWING
Epilepsy and Medical Issues
coping strategies in these areas are emphasized Control.
in specific modules and throughout
quality of life.
the program.
TOPICS:
Dealing with Stress and the Blues (I)
WHOELEMENTS
IS IT FOR? THE GOAL:
• Epilepsy and Medical
Dealing with Stress and the Blues (II)
KEY PROGRAM
People with epilepsy. Empower people with epilepsy
Issues to improve their own mental health
Compensating for Cognitive • Qualified facilitator tandem to include a trained epilepsy mental health professional through mindfulness and
Challenges and a trained peer with epilepsy WHEN: cognitive skills.
• Dealing with Stress • Mode of delivery involves an education component, assistance with coping strategy
Date and time to be determined
Epilepsy and Medical Issues development, and goal setting.
and the Blues (I) • Delivery method is at participant’s choice: on-site or by telephone. A web-based WHO IS IT FOR?
Getting the Most out of Community program is being investigated. People with epilepsy with symptoms
Living WHERE: of depression, stress, or anxiety.
• Dealing with Stress
Managing My Epilepsy Care Where you are most comfortable! Eligibility criteria may apply.
andEffective
theCommunication
Blues about (II)My PROGRAM
Small group EFFECTIVENESS
telephone calls once a
Epilepsy week for 60 minutes for 8 weeks. WHEN:
Date and time to be determined.
• Compensating
My Health & Well-Being
for Inlife,themood,
first randomizedUsing
control trial a
(RCT),
homethe program
orsignificantly
cell phone,improved quality of
epilepsy self-efficacy, and epilepsy self-management. Improvements remained, Call Lori for more details
Cognitive Challengesatside6 months, justfor mood, epilepsy self-efficacy, epilepsy self-management, andprovided
call into the phone number medication
when
effect-related aspects of quality of life. you register.
No special equipment needed.
WHERE:
• Getting the Most out Where you are most comfortable!
of Community Living Small group telephone calls once a
WHO ARE THE FACILITATORS? week for 60 minutes for 8 weeks.
Lori Kidd, BSW/QMRP Using a home or cell phone,
• Managing My Epilepsy EFNENY Director of Information, Referral just call into the phone number
Care & Special Projects provided when you register.
Erica DeNicola-Scher, MS No special equipment needed.
• Effective Communication Director of Community Education
about MY Epilepsy & Advocacy Coordinator
WHO IS THE FACILITATOR?
Jodi Streich, PhD,
Clinical Psychologist and member of
• My Health & Well-Being EFNENY Professional Advisory Board
HOW DO I GET INVOLVED?
For more information contact:
Lori at lkidd@epilepsyneny.org
HOW DO I GET INVOLVED?
For more information contact:
518.456.7501 - Ext: 104 Lori at lkidd@epilepsyneny.org
518.456.7501 - Ext: 104
- Page 5 -
Golf Tournament for Epilepsy Update
SAVE Our annual Golf Tournament for Epilepsy was held on Monday, October 5th at the
THE DATE! Wolferts Roost Country Club, raising $43,895. Twenty-two foursomes played on
a beautiful fall day. Prizes were awarded to the Top Foursomes and hole contest
winners. The day also included raffle prizes, online bidding for great auction
Virtual items, and the ever popular Poker Challenge. New this year, each Tee Sign had
Confections in an epilepsy fact. Golfers were asked to read the facts and fill in the blanks on a
sheet listing the facts. All correct sheets were entered into a drawing to win a
Chocolate Gala $50 gift card to a local restaurant.
Due to our ongoing The Awards Ceremony was held later that evening virtually over Zoom.
commitment to maintain a safe Prizes were awarded to the following golfers:
environment for our staff and 1st Place NET (50*):
guests, the 2021 Confections Nick Bisaccia, Dan Coyle, Lou Senerchia and Pat Marciano
in Chocolate Gala will be held
virtually once again in early 1st Place GROSS (59):
Spring. More information Joe Parrottino, John David, and Bob Blackman
will be provided as plans are 2nd Place NET (54*):
confirmed. Evan Short, Lance Bull, Damien Tyler, and Andrew Downing
3rd Place NET (54*):
Gary Barkman, David Crawford, Tony Ramos, and James Carlucci
Closest to the Pin Hole 4:
Men: Mike Fitzgerald (10’6”); Women: Jane Balander (18’5”)
Our $5,000 Closest to the Pin Hole 10:
“Raffle for Epilepsy” Men: Dave Weiler (5’2”); Women: NONE
is Back! Long Drive Hole 14:
Men: Damian Tyler; Women: Jane Balander
A limited number of 100 Poker Challenge Winner (Full House): Mike Fitzgerald
tickets are now available for Know Your Epilepsy Facts quiz: Jerry Abdelnour
our 2021 special raffle at only Congratulations to all!
$100 per ticket!
First Place Prize is $4,000 Thank you to our generous top sponsors:
There will even be TWO
second-prize winners who
will each receive $500!
The remaining funds will be
used to support EFNENY’s
programs and services that
we offer at no cost to an
estimated 45,000 people
affected by epilepsy in
Northeastern New York.
The drawing will be held
during our Virtual Confections
in Chocolate gala.
Purchase your tickets now by
emailing Katelyn at
kmarkellos@epilepsyneny.org
or visit
bit.ly/EFNENY2021Raffle
to purchase online.
Proceeds from the above events support our programs and services we continue to provide during the pandemic.
More information is available on our Facebook page and website, or contact Susan at
skaczynski@epilepsyneny.org | 518.456.7501 - Ext: 114.
- Page 6 -
Find Your Support
We are excited to continue our over the phone support groups for
adults diagnosed with epilepsy.
Adult Support Group
Please join us for our Support Group meeting for individuals, The Epilepsy Art Therapy
18 and over, diagnosed with epilepsy Support Group
Meetings will be held on the third Tuesday of each month
from 7:00-8:30 PM The Epilepsy Foundation of
Mark your calendar for the monthly meeting dates listed below: Northeastern New York is excited
November 17th December 15th to continue to bring you the
opportunity to express yourself
Registration Required through art as part of a monthly
For call-in information please contact Jodi Radler at art therapy program.
jradler@epilepsyneny.org
You’ll work with art therapists and
other people with epilepsy in a
Men’s Support Group group setting to create artistic
Meetings will be held on the last Wednesday pieces using a variety of mediums.
of each month from 7:00-8:00 PM This group develops strong bonds
and uses their time together as a
Mark your calendar for the monthly meeting dates listed below: support group.
November 25th December 30th
Facilitated by Lori Kidd, BSW/QMRP Ongoing enrollment.
EFNENY Director of Information, Referral and Special Projects
Admission is FREE.
Women’s Support Group Please note that this program
Join us on the second Thursday of each month from 7:00-8:00 PM is offered exclusively to adults
with epilepsy.
Mark your calendar for the monthly meeting dates listed below:
November 12th December 10th No artistic talents required!
Facilitated by Jodi Streich, PhD, Clinical Psychologist
and member of EFNENY Professional Advisory Board
For call-in information for either the Men’s or Women’s group,
please contact Lori at lkidd@epilepsyneny.org Studio e Artwork
to Be Displayed at Albany Med
Traumatic Brain Injury (TBI) Support Group The next time you attend an
appointment with an adult
Plans are being made for a TBI Support Group. Watch for more neurologist at Albany Medical
information on our Facebook page, website, and the next newsletter. Center, be sure to check out the
Please contact Jenny at jguerette@epilepsyneny.org | 518.456.7501 - beautiful artwork created by our
Ext: 105 if you are interested. Studio e art therapy participants.
The artwork will be on display
through the end of the year.
All of the artwork is created by
local community members who are
living with epilepsy.
For more information about joining
the 2021 Studio e program,
contact Lori at
RNS Community Chat lkidd@epilepsyneny.org.
The RNS Community Chat is the second Tuesday of each month at
5pm PDT | 8pm EDT. All are welcome to join the conversation: There is no cost for this program,
www.neuropace.com/communitychat and meetings are currently
held on Zoom.
- Page 7 -
NONPROFIT
ADDRESS SERVICE REQUESTED ORGANIZATION
U.S. POSTAGE PAID
Albany, N.Y.
Permit No. 694
3 Washington Square, Albany, NY 12205
Phone: 518.456.7501
Fax: 518.452.1282
Toll Free: 800.894.3223
www.epilepsy.com/northeastern-new-york
If your name or address has changed or is misspelled, or if you receive multiple copies of our
newsletter, or simply wish to be removed from our mailing list, please contact Darcy at
dbelow@epilepsyneny.org.
Raise Awareness and Show Your Support!
You can help us make a direct impact on the lives of those affected by epilepsy.
November is the perfect time to show support!
Painting With A Purpose Fundraiser
Hosted by: Painting With A Twist, Latham Studio
November 8th | 2:00 PM - 4:00 PM
Cost: $40, 50% goes to EFNENY
Virtual Painting Class – paint in the comfort of your home while being guided by an
instructor over Zoom! Supplies must be picked up at the Latham Studio prior to the
event.
Register online at:
https://www.paintingwithatwist.com/studio/albany/
This December 1st, you have the power to make an incredible impact for our agency by
joining a global movement called Giving Tuesday. On this day, charitable organizations
around the world utilize social media to encourage people to give any amount they can.
We will be joining this campaign, and you can help get the word out!
Donations Needed for the Holiday Fund
Holiday Gift Card Drive
Many of our families just need a little extra help at the holidays. If you are interested in donating gift cards to
our families in need, we would greatly appreciate gift cards for Target, Walmart, Price Chopper, ShopRite, or
Hannaford. For more information or to donate, please contact Lori at lkidd@epilepsyneny.org | 518.456.7501 -
Ext: 104
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