Resources for Persons with Epilepsy in NYC Lorna Myers, Ph.D. Co-director of Epilepsy Life Links www.epilepsylifelinks.com
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: • http://www.epilepsylifelinks.com/events-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 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: www.navigatingepilepsy.com
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: • http://epilepsylifelinks.com/scholarship-children-adults.php • Or, contact me at 212-661-7460, option 5 or email@example.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.
Support Groups • New 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 Groups • New 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 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) • http://www.epilepsyfoundation.org/resources/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 Transportation • Transportation 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/downloads/pdf/earlyint/earlydirectory-respite.pdf
Other Referrals & Resources: Medications • Prescription 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/epilepsy-medications-assistance.php
Other Referrals & Resources: Medications • 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 • Epilepsy 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 & Associations • Autism 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 Links • Epilepsia en Latino America • Twitter: EpilepsyLL
Thank you! • Be well and stay in touch