Resources for Persons with Epilepsy in NYC

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

2. What is Epilepsy Life Links? • A Northeast Regional Epilepsy Group Advocacy Branch • Our doctors realized that there were services that our patients needed and that were not being met by any other agency

3. 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.

4. Education Programs • 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

5. Education Programs • For a list of our upcoming events: • http://www.epilepsylifelinks.com/events-news-epilepsy-new-york-new-jersey-connecticut.php

6. 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

7. 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).

8. 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

9. 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

10. 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-children-adults.php • Or, contact me at 212-661-7460, option 5 or lmyers@epilepsygroup.com

11. 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.

12. 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

13. Support Groups • New Jersey Groups: • Jersey City Medical Center: 1stTues; 6-7pm • Hackensack Hospital: 3rd Thurs; 6:30-7:30 pm • Hackensack Spanish Group: 2nd Thur; 6:30-7:30 pm

14. Psychological help • Individual and group psychotherapy for patients with a diagnosis of epilepsy (Manhattan, Middletown and White Plains, NY and Hackensack and Summit, NJ)

15. 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 • April 2013 Washington DC • Transportation Funds provided by NEREG will be available through several Epilepsy Foundations • We also attend walks every year in: • Northeast NY • The shore, NJ • Edison, NJ • Connecticut

16. Wellness Programs 2012 • Yoga: free classes in our Manhattan office • Purple knitting club: White Plains y Middletown, NY and Hackensack, NJ • Fun Farm Day (AlstedeFarms, NJ) • Purple Pumpkin Project: Hackensack y Summit, NJ and Middletown, NY • Volunteer activities

17. 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

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

19. 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

20. 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

21. 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

22. 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

23. 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/

24. 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/

25. Stay Connected! • Quarterly Newsletter to stay informed • Sign up to receive it electronically • Blogs: • www.NavigatingEpilepsy.Com • http://www.epilepsymemory.com/ • Facebook: Epilepsy Life Links • Epilepsia en Latino America • Twitter: EpilepsyLL

26. Purple is the color for epilepsy • November: National epilepsy awareness month • Purple: International epilepsy color • March 26: International Day of Epilepsy–Purple Day

27. 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?

28. Thank you! • Be well and stay in touch