resources for persons with epilepsy in nyc
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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 - PowerPoint PPT PresentationTRANSCRIPT
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