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

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:
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): 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: New Jersey 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)
epilepsy/index.cfm/

17. Other Referrals & Resources: Food and Transportation
Transportation Services:
rlyint/earlydirectory-trans.pdf
USA Public Transportation by State:

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

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

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

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

22. Stay Connected! Quarterly Newsletter to stay informed Blogs:
Sign up to receive it electronically
Blogs:
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