Resources for Persons with Epilepsy in NYC Lorna Myers, Ph.D. Co-director of Epilepsy Life Links www.epilepsylifelinks.com.
Download
Report
Transcript Resources for Persons with Epilepsy in NYC Lorna Myers, Ph.D. Co-director of Epilepsy Life Links www.epilepsylifelinks.com.
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:
◦ 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/epilepsymedications-assistance.php
Other Referrals & Resources:
Medications
Prescription Assistance Programs
◦ Many programs by location & medication
◦ http://www.epilepsylifelinks.com/epilepsyprescription-assistance-program.php
Discounted Generic Programs:
◦ http://www.epilepsylifelinks.com/epilepsygeneric-discounts.php
Additional Prescription Programs:
◦ http://www.epilepsylifelinks.com/epilepsymedications-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
◦ 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