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?
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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
◦ 2012: 14 educational conferences in NY, NJ,
CT
◦ Free educational events for nurses
Education Programs
◦ For a list of our upcoming events:
◦ http://www.epilepsylifelinks.com/events-newsepilepsy-new-york-new-jerseyconnecticut.php
Educating the General Public
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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
Students with Epilepsy may be entitled to
a 504 Plan or an IEP
 504 Plans

◦ Section 504 of the Rehabilitation Act: No one
with a disability can be excluded from a
federally funded program
◦ E.g., use of tape recorder, ramp, extra set of
textbooks
School Services
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IEP
◦ A small subset of disabled students qualify for this
program
◦ More stringent criteria than a 504
◦ Involves significant remediation and assistance to
allow education to occur
◦ Parent or teacher can request an evaluation of child
in order to determine eligibility
◦ Often an independent neuropsychologist will be part
of the process (sometimes paid by school)
 Language must be respected in testing process
◦ Reviewed and updated yearly
◦ Recent Blog Post: www.navigatingepilepsy.com
School Services

NEREG/Life Links offers TWO Scholarship
Programs:
◦ Summer camp scholarship for children 8-18
 2012 = nine $250/child scholarships
◦ College/Trade School, Continuing Education
scholarship for adults
 2012 = five $1,000/scholarships
◦ For more info or for an application (January
2013):
 http://epilepsylifelinks.com/scholarship-childrenadults.php
 Or, contact me at 212-661-7460, option 5 or
lmyers@epilepsygroup.com
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:
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Middletown Office: 2nd Tues; 6-7 pm
Staten Island: 3rd Mon; 6-7pm
White Plains Hospital: 1st Thurs; 6:30-7:30 pm
Manhattan: 1st Mon; 6-7pm
Manhattan Spanish Group: 2nd Mon; 6-7 pm
Support Groups
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New Jersey Groups:
◦ Jersey City Medical Center: 1st Tues; 6-7pm
◦ Hackensack Hospital: 3rd Thurs; 6:30-7:30 pm
◦ Hackensack Spanish Group: 2nd Thur; 6:307:30 pm
Psychological help

Individual and group psychotherapy for
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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◦ April 2013 Washington DC
◦ Transportation Funds provided by NEREG will be
available through several Epilepsy Foundations
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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 our Manhattan office
 Purple knitting club: White Plains y
Middletown, NY and Hackensack, NJ
 Fun Farm Day (Alstede Farms, NJ)
 Purple Pumpkin Project: Hackensack y
Summit, NJ and Middletown, NY
 Volunteer activities
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Wellness Program 2012
Computer classes 101: White Plains, NY y
Hackensack, NJ
 Epilepsy Spoken Word: for teens and
young adults who write or listen to
poetry and have epilepsy. Manhattan, NY
 On-line book Club (on-line or
telephone).
 Art class (Manhattan) y Illuminations
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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/
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NYC Early Intervention Program
◦ Call 311 for centers your borough, or visit
◦ General Info:
http://www.nyc.gov/html/doh/html/earlyint/ear
lyint.shtml
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
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Respite Care in NYC:
◦ http://www.nyc.gov/html/doh/downloads/pdf/e
arlyint/earlydirectory-respite.pdf
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 2013 bringing?
Conferences y webinars
 Epilepsy Walks
 Support Groups
 Yoga/pilates/taekwondo and self defense
 Purple knitting club/needlepoint
 Computer classes, Purple Pumpkin, Farm
trips in NY and NJ
 Spa treatments/diet consults
 Medication assistance?
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Thank you!
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Be well and stay in touch