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Resources for Persons with Epilepsy in NYC
Lorna Myers, Ph.D.Co-director of Epilepsy Life Linkswww.epilepsylifelinks.com
The More You KnowKnowledge is Power!The more you know about
Epilepsy, the more prepared you will be to tackle some of it’s challenges, seek the best possible treatments, and understand options and services that may be available to you.
Epilepsy Life Links in NYProvide education to patients and
the public (open)Epilepsy in the school (NEREG)Support groups (open)Community Activities (open)Wellness program (open)Referral to necessary services
(case by case)
Education ProgramsEducational Programs for Patients
and caretakers◦These conferences are free and open
to all◦Important updates in epilepsy
treatment and important topics in epilepsy Ex. SUDEP, new surgical techniques,
Epilepsy in Women, autism, and Mental Health in Epilepsy.
Free educational events for nurses
Education Programs◦For a list of our upcoming events:◦http://www.epilepsylifelinks.com/eve
nts-news-epilepsy-new-york-new-jersey-connecticut.php
Educating the General Public The NEREG/Life Links team:
◦Nurse practitioners◦Epileptologists◦Neuropsychologists◦Psychologists ◦Epilepsy advocates
By invitation to schools (teachers, students)
Police and fire departments
Epilepsy in the SchoolOur 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).◦Seizure recognition and first aid training
conducted by registered nurses ◦Counsel parents on education law and/or
connect with important resources.
School ServicesStudents with Epilepsy may be
entitled to a 504 Plan or an IEP504 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 ServicesIEP
◦ 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 ServicesNEREG/Life Links offers TWO
Scholarship Programs: ◦Summer camp scholarship for children 8-18
$250/child
◦College/Trade School, Continuing Education scholarship for adults $1,000/scholarship
◦For more info or for an application: http://
epilepsylifelinks.com/scholarship-children-adults.php
Or, contact me at 212-661-7460, option 5 or [email protected]
Support GroupsThe 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.
Support GroupsNew York Groups:
◦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 GroupsNew Jersey Groups:
◦Overlook Hospital: 1st Tues; 6:30-7:30 pm
◦Jersey City Medical Center: 1st Tues; 6-7pm
◦Hackensack Hospital: 3rd Thurs; 6:30-7:30 pm
◦Hackensack Spanish Group: 2nd Thur; 6:30-7:30 pmg
◦Hackensack Teen: 1st Thur; 6:30-7:30 pm
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
Sarah’s Strikes For Seizures◦ November 19th in Wappinger Falls, NY
National Walk for Epilepsy◦ March 31st in Washington DC◦ Transportation Funds provided by NEREG will be available
through several Epilepsy Foundations We also attend walks every year in:
◦ Northeast NY◦ Seaside Heights, NJ◦ Edison, NJ◦ Connecticut
Wellness ProgramOn-line Book Club
◦One book/three months related to epilepsy, online discussion
Demonstrations of skills that you can take home ◦For example, knitting, fabric art, mat
pilates, drawingVolunteer Opportunities
◦Vary depending on season
Referral serviceCase by case, specific referrals
may be needed.Database of services
Other Referrals & ResourcesDisability Attorney Referrals
◦Epilepsy Legal Defense Fund (EF)◦http://www.epilepsyfoundation.org/re
sources/epilepsy/index.cfm/ NYC Early Intervention Program
◦Call 311 for centers your borough, or visit
◦General Info: http://www.nyc.gov/html/doh/html/earlyint/earlyint.shtml
Other Referrals & Resources: Food and TransportationTransportation Services:
◦http://www.nyc.gov/html/doh/dowloads/pdf/earlyint/earlydirectory-trans.pdf
◦USA Public Transportation by State: http://www.epilepsylifelinks.com/epilepsy-
medications-assistance.php
Respite Care in NYC:◦http://www.nyc.gov/html/doh/downlo
ads/pdf/earlyint/earlydirectory-respite.pdf
Other Referrals & Resources: MedicationsPrescription Assistance Programs
◦Many programs by location & medication
◦http://www.epilepsylifelinks.com/epilepsy-prescription-assistance-program.php
Discounted Generic Programs:◦http://
www.epilepsylifelinks.com/epilepsy-generic-discounts.php
Additional Prescription Programs:◦http://www.epilepsylifelinks.com/epil
epsy-medications-assistance.php
Other Referrals & Resources: MedicationsPregnancy Registries:
◦http://www.aedpregnancyregistry.org◦(888)233-2334◦Lamotrigine (Lamictal) Pregnancy
Registry (800) 336-2176 ◦Levetiracetam (Keppra) Pregnancy
Registry (888) 537-7734
Agencies & AssociationsEpilepsy Foundation of America
◦http://www.epilepsyfoundation.org/Dravet Foundation
◦http://www.dravetfoundation.org/Tuberous Sclerosis Alliance
◦http://www.tsalliance.org/Intractable Childhood Epilepsy Alliance
◦http://www.ice-epilepsy.org/Brain Injury Association of America
◦http://www.biausa.org/
Agencies & AssociationsAutism Speaks
◦http://www.autismspeaks.org/Epilepsy Society of Southern NY
◦http://www.essny.org/Lenox Gastaut Foundation
◦http://www.lgsfoundation.org/Seizure Tracker
◦https://www.seizuretracker.com/
Stay Connected!Quarterly Newsletter to stay
informed◦Sign up to receive it electronically
Blogs:◦www.NavigatingEpilepsy.Com◦http://blog.nonepilepticseizures.com/
Facebook: Epilepsy Life LinksEpilepsia en Latino AmericaTwitter: EpilepsyLL
Thank you!Be well and stay in touch
