Resources for Persons with Epilepsy in NYC

Resources for Persons with Epilepsy in NYCLorna Myers, Ph.D.Co-director of Epilepsy Life Linkswww.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 KnowKnowledge 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 ProgramsEducational 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 SchoolOur 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 ServicesEpilepsy 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 GroupsThe 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 GroupsNew 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

Psychological helpIndividual and group

psychotherapy for our patients with a diagnosis of epilepsy (Manhattan, Middletown and White Plains, NY and Hackensack and Summit, NJ)

Walks & FundraisersNEREG/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 2012Yoga: free classes in a Manhattan

studioMat pilates: Manhattan, NYArt: Manhattan, NY and Hackensack, NJPurple knitting club: Hackensack, NJ

and Manhattan, NYPurple Pumpkin Project: Hackensack, NJPurple picture coloring competition:

Summit, NJ and White Plains, NY

Wellness Program 2012Art class (Manhattan) and

IlluminationsVolunteer activities: everywhere

Referral serviceCase by case, specific referrals

may be needed.Database of services

Other Referrals & ResourcesDisability Attorney Referrals

◦Epilepsy Legal Defense Fund (EF)◦http://www.epilepsyfoundation.org/re

sources/epilepsy/index.cfm/

Other Referrals & Resources: Food and TransportationTransportation 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

Other Referrals & Resources: MedicationsPrescription 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/epilep

sy-medications-assistance.php

Other Referrals & Resources: MedicationsPregnancy Registries:

◦http://www.aedpregnancyregistry.org◦(888)233-2334◦Lamotrigine (Lamictal) Pregnancy

Registry (800) 336-2176 ◦Levetiracetam (Keppra) Pregnancy

Registry (888) 537-7734

Agencies & AssociationsEpilepsy 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 & AssociationsAutism 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://www.epilepsymemory.com/

Facebook: Epilepsy Life LinksEpilepsia en Latino AmericaTwitter: EpilepsyLL

Purple is the color for epilepsyNovember: National epilepsy

awareness monthPurple: International epilepsy

colorMarch 26: International Day of

Epilepsy–Purple Day

What is 2014 bringing?Conferences y webinarsEpilepsy WalksSupport GroupsWellness program

Thank you!Be well and stay in touch