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 • 2013: 9 educational conferences in NY, NJ, CT • 12 webinars • Free educational events for nurses

5. Education Programs • For a list of our upcoming events: • http://www.epilepsylifelinks.com • Click on events

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 • Epilepsy Free Foundation offers TWO Scholarship Programs: • Summer camp scholarship for children 8-18 • 2013 = 15 $400/child scholarships • College/Trade School, Continuing Education scholarship for adults • 2013 = five $1,000/scholarships • For more info or for an application (January 2014): www.epilepsyfree.com, click on Epilepsy Support

9. 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.

10. Support Groups • New York Groups: • Middletown Office: 2nd Tues; 6-7 pm • White Plains Hospital: 1st Thurs; 6:30-7:30 pm • Manhattan: 1st Mon; 6-7pm • New Jersey Groups: • Jersey City Medical Center: 1st Tues; 6-7pm • Hackensack Hospital: 3rd Wed; 6:30-7:30 pm

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

12. 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 • March 2014 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

13. Wellness Programs 2012 • Yoga: free classes in a Manhattan studio • Mat pilates: Manhattan, NY • Art: Manhattan, NY and Hackensack, NJ • Purple knitting club: Hackensack, NJ and Manhattan, NY • Purple Pumpkin Project: Hackensack, NJ • Purple picture coloring competition: Summit, NJ and White Plains, NY

14. Wellness Program 2012 • Art class (Manhattan) and Illuminations • Volunteer activities: everywhere

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

16. Other Referrals & Resources • Disability Attorney Referrals • Epilepsy Legal Defense Fund (EF) • http://www.epilepsyfoundation.org/resources/epilepsy/index.cfm/

17. 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

18. 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

19. 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

20. 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/

21. 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/

22. 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

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

24. What is 2014 bringing? • Conferences y webinars • Epilepsy Walks • Support Groups • Wellness program

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