Resources for Persons with
Epilepsy in NYC
Lorna Myers, Ph.D.
Co-director of Epilepsy Life Links
www.epilepsylifelinks.com
What is Epilepsy Life Links?

A Northeast Regional Epilepsy Group
Advocacy Branch
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Our doctors realized that there were
services that our patients needed and
that were not being met by any other
agency
The More You Know
Knowledge is Power!
 The more you know about Epilepsy, the
more prepared you will be to tackle it’s
challenges, seek the best possible
treatments, and understand options and
services that may be available to you.

Education Programs
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Educational Programs for Patients and
caretakers
◦ These conferences are free and open to all
◦ Important updates in epilepsy treatment and
key topics in epilepsy by epilepsy experts
◦ Introduction to wellness programs and local
resources
◦ 2013: 9 educational conferences in NY, NJ, CT
◦ 12 webinars
◦ Free educational events for nurses
Education Programs
◦ For a list of our upcoming events:
◦ http://www.epilepsylifelinks.com
 Click on events
Educating the General Public

The NEREG/Life Links team:
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Nurse practitioners
Epileptologists
Neuropsychologists
Psychologists
Epilepsy advocates
 By invitation to schools (teachers, students)
 Police and fire departments
Epilepsy in the School

Our nurses: Seizure recognition and first aid
training (by invitation)
Our neuropsychologists assess and prepare
academic (and other) recommendations based
on neuropsychological testing.
◦ Can also represent students at IEP meetings
(through phone conference).
School Services

Epilepsy Free Foundation offers TWO
Scholarship Programs:
◦ Summer camp scholarship for children 8-18
 2013 = 15 $400/child scholarships
◦ College/Trade School, Continuing Education
scholarship for adults
 2013 = five $1,000/scholarships
◦ For more info or for an application (January
2014): www.epilepsyfree.com, click on
Epilepsy Support
Support Groups
The importance of social activities as part
of a comprehensive epilepsy treatment
approach.
 There groups are free, open to the public
and for patients, family and caregivers
alike.
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Support Groups
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New York Groups:
◦ Middletown Office: 2nd Tues; 6-7 pm
◦ White Plains Hospital: 1st Thurs; 6:30-7:30 pm
◦ Manhattan: 1st Mon; 6-7pm

New Jersey Groups:
◦ Jersey City Medical Center: 1st Tues; 6-7pm
◦ Hackensack Hospital: 3rd Wed; 6:30-7:30 pm
Psychological help

Individual and group psychotherapy for
our patients with a diagnosis of epilepsy
(Manhattan, Middletown and White Plains,
NY and Hackensack and Summit, NJ)
Walks & Fundraisers
NEREG/Life Links is active throughout the year,
attending various walks and fundraisers. We invite
you to join our team and attend events with the
doctors and fellow patients
 National Walk for Epilepsy
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◦ March 2014 Washington DC
◦ Transportation Funds provided by NEREG will be
available through several Epilepsy Foundations

We also attend walks every year in:
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Northeast NY
The shore, NJ
Edison, NJ
Connecticut
Wellness Programs 2012
Yoga: free classes in a Manhattan studio
 Mat pilates: Manhattan, NY
 Art: Manhattan, NY and Hackensack, NJ
 Purple knitting club: Hackensack, NJ and
Manhattan, NY
 Purple Pumpkin Project: Hackensack, NJ
 Purple picture coloring competition:
Summit, NJ and White Plains, NY
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Wellness Program 2012
Art class (Manhattan) and Illuminations
 Volunteer activities: everywhere
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Referral service
Case by case, specific referrals may be
needed.
 Database of services
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Other Referrals & Resources
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Disability Attorney Referrals
◦ Epilepsy Legal Defense Fund (EF)
◦ http://www.epilepsyfoundation.org/resources/
epilepsy/index.cfm/
Other Referrals & Resources: Food
and Transportation
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Transportation Services:
◦ http://www.nyc.gov/html/doh/dowloads/pdf/ea
rlyint/earlydirectory-trans.pdf
◦ USA Public Transportation by State:
 http://www.epilepsylifelinks.com/epilepsymedications-assistance.php
Other Referrals & Resources:
Medications
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Prescription Assistance Programs
◦ Many programs by location & medication
◦ http://www.epilepsylifelinks.com/epilepsyprescription-assistance-program.php
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Discounted Generic Programs:
◦ http://www.epilepsylifelinks.com/epilepsygeneric-discounts.php
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Additional Prescription Programs:
◦ http://www.epilepsylifelinks.com/epilepsymedications-assistance.php
Other Referrals & Resources:
Medications
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Pregnancy Registries:
◦ http://www.aedpregnancyregistry.org
◦ (888)233-2334
◦ Lamotrigine (Lamictal) Pregnancy Registry
(800) 336-2176
◦ Levetiracetam (Keppra) Pregnancy Registry
(888) 537-7734
Agencies & Associations
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Epilepsy Foundation of America
◦ http://www.epilepsyfoundation.org/
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Dravet Foundation
◦ http://www.dravetfoundation.org/
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Tuberous Sclerosis Alliance
◦ http://www.tsalliance.org/
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Intractable Childhood Epilepsy Alliance
◦ http://www.ice-epilepsy.org/
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Brain Injury Association of America
◦ http://www.biausa.org/
Agencies & Associations
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Autism Speaks
◦ http://www.autismspeaks.org/
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Epilepsy Society of Southern NY
◦ http://www.essny.org/
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Lenox Gastaut Foundation
◦ http://www.lgsfoundation.org/
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Seizure Tracker
◦ https://www.seizuretracker.com/
Stay Connected!
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Quarterly Newsletter to stay informed
◦ Sign up to receive it electronically
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Blogs:
◦ www.NavigatingEpilepsy.Com
◦ http://www.epilepsymemory.com/
Facebook: Epilepsy Life Links
 Epilepsia en Latino America
 Twitter: EpilepsyLL
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Purple is the color for epilepsy
November: National epilepsy awareness
month
 Purple: International epilepsy color
 March 26: International Day of Epilepsy–
Purple Day
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What is 2014 bringing?
Conferences y webinars
 Epilepsy Walks
 Support Groups
 Wellness program
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Thank you!
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Be well and stay in touch