Resources for Persons with Epilepsy in NYC Lorna Myers, Ph.D. Co-director of Epilepsy Life Links

The More You Know Knowledge 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 NY Provide 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 Programs Educational 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: ◦ epilepsy-new-york-new-jersey- connecticut.php 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 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). ◦ Seizure recognition and first aid training conducted by registered nurses ◦ Counsel parents on education law and/or connect with important resources.

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 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:

School Services NEREG/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:  adults.php adults.php  Or, contact me at , option 5 or

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.

Support Groups New York Groups: ◦ Middletown Office: 2 nd Tues; 6-7 pm ◦ Staten Island: 3 rd Mon; 6-7pm ◦ White Plains Hospital: 1 st Thurs; 6:30-7:30 pm ◦ Manhattan: 1 st Mon; 6-7pm ◦ Manhattan Spanish Group: 2 nd Mon; 6-7 pm

Support Groups New Jersey Groups: ◦ Overlook Hospital: 1 st Tues; 6:30-7:30 pm ◦ Jersey City Medical Center: 1 st Tues; 6-7pm ◦ Hackensack Hospital: 3 rd Thurs; 6:30-7:30 pm ◦ Hackensack Spanish Group: 2 nd Thur; 6:30- 7:30 pmg ◦ Hackensack Teen: 1 st 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 19 th in Wappinger Falls, NY National Walk for Epilepsy ◦ March 31 st 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 Program On-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, drawing Volunteer Opportunities ◦ Vary depending on season

Referral service Case by case, specific referrals may be needed. Database of services

Other Referrals & Resources Disability Attorney Referrals ◦ Epilepsy Legal Defense Fund (EF) ◦ epilepsy/index.cfm/ epilepsy/index.cfm/ NYC Early Intervention Program ◦ Call 311 for centers your borough, or visit ◦ General Info: lyint.shtml lyint.shtml

Other Referrals & Resources: Food and Transportation Transportation Services: ◦ rlyint/earlydirectory-trans.pdf rlyint/earlydirectory-trans.pdf ◦ USA Public Transportation by State:  medications-assistance.php medications-assistance.php Respite Care in NYC: ◦ arlyint/earlydirectory-respite.pdf arlyint/earlydirectory-respite.pdf

Other Referrals & Resources: Medications Prescription Assistance Programs ◦ Many programs by location & medication ◦ prescription-assistance-program.php prescription-assistance-program.php Discounted Generic Programs: ◦ generic-discounts.php generic-discounts.php Additional Prescription Programs: ◦ medications-assistance.php medications-assistance.php

Other Referrals & Resources: Medications Pregnancy Registries: ◦ ◦ (888) ◦ Lamotrigine (Lamictal) Pregnancy Registry (800) ◦ Levetiracetam (Keppra) Pregnancy Registry (888)

Agencies & Associations Epilepsy Foundation of America ◦ Dravet Foundation ◦ Tuberous Sclerosis Alliance ◦ Intractable Childhood Epilepsy Alliance ◦ Brain Injury Association of America ◦

Agencies & Associations Autism Speaks ◦ Epilepsy Society of Southern NY ◦ Lenox Gastaut Foundation ◦ Seizure Tracker ◦

Stay Connected! Quarterly Newsletter to stay informed ◦ Sign up to receive it electronically Blogs: ◦ ◦ Facebook: Epilepsy Life Links Epilepsia en Latino America Twitter: EpilepsyLL

Thank you! Be well and stay in touch