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

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

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.

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

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

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).

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

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: 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

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)

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

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

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

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/

Other Referrals & Resources: Food and Transportation Transportation Services: http://www.nyc.gov/html/doh/dowloads/pdf/ea rlyint/earlydirectory-trans.pdf USA Public Transportation by State: http://www.epilepsylifelinks.com/epilepsy-medications-assistance.php

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 Blogs: Sign up to receive it electronically Blogs: www.NavigatingEpilepsy.Com http://www.epilepsymemory.com/ Facebook: Epilepsy Life Links Epilepsia en Latino America Twitter: EpilepsyLL

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

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

Thank you! Be well and stay in touch