Epilepsy

Epilepsy strikes most often among the very young and the very old, although anyone can develop epilepsy at any age. In New York, the CDC estimates that 215,200 people have active epilepsy which includes 26,600 children. While medications and other treatments help, at least 30% will have seizures that severely limit school achievements, employment prospects and participation in life.

If you or a loved one has epilepsy, EPI can help. We offer epilepsy-specific programs, as well as many other individual and family supports that can assist a person with epilepsy in living the life of their choosing.

Epilepsy Alliance of West Central NY is a part of Empowering People’s Independence (EPI). We are dedicated to supporting those impacted by epilepsy in our communities by confronting the spectrum of challenges created by seizures.

We serve more than 6,000 children and adults in 22 counties in the Finger Lakes, Central and Southern Tier regions of New York State.

For more than 40 years, we have been providing epilepsy services to our communities, including education, support, training, advocacy and tailored support to meet the physical, behavioral and social needs of each person we serve.

We are a member of the Epilepsy Coalition of NYS, a coalition of six agencies in different regions of NY focused on providing services to people with epilepsy. We are also a founding member of the Epilepsy Alliance America, national organization dedicated to providing support, care, and service to those with epilepsy.

Services

Camp Programs

We offer two annual sleepaway camps for kids and young adults with epilepsy. Camp EAGR is a week-long camp for kids age 8 to 17 with epilepsy and their siblings. Camp COAST is for young adults aged 18+ with epilepsy and other disabilities. The camps provide connections with peers and respite for parents. Both camps have onsite, 24-hour neurologist support.

Visit Camp EAGR and Camp COAST for more information about our camp programs and registration details.

Epilepsy Education & Seizure First Aid Training

We host conferences, workshops, webinars, and more to teach people, schools, and businesses about epilepsy and how to help their friends and neighbors that are affected by seizures. Learn more about our education and training programs on our Epilepsy Education & Seizure First Aid Training. Information about upcoming Community Education Events can also be found our Events page .

Individual/Family Consultation

We provide customized one-on-one support to anyone affected by epilepsy, based on the needs that are shared with our knowledgeable staff. Newly diagnosed? Having breakthrough seizures? Questions about finding a neurologist or epileptologist? Call us and we can help!

Information and Referrals

We provide information about epilepsy and connect people with other community resources and organizations which can provide additional support. Needs can include assistance with medication, respite supports, help with housing, food, and other basic necessities.

Medication & Seizure Monitoring Device Assistance

We provide help in accessing medication assistance programs for individuals and families who cannot afford their anti-seizure medications. We can also help you decide if a movement monitor might detect your seizures and connect you with resources that may be able to provide a monitor for low or no cost.

Networking, Support, Wellness Groups & Social Events

We host networking, support, wellness, and recreational groups as well as social events for people affected by epilepsy of all ages, providing opportunities for those impacted by seizures to meet others who are confronting similar challenges. Find more information including dates of upcoming events on our Epilepsy Groups page.

Service Access Assistance & Case Management

We provide guidance and support for people accessing and navigating services such as those through the NYS Office for People with Developmental Disabilities, NYS Department of Health, and others. We also offer short-term case management for those who have demonstrated needs but do not qualify for specific assistance programs.

Special Education Advocacy

We can teach you about the rights of children with epilepsy in school and assist with special education services like Seizure Action Plans, 504 Plans, and Individualized Education Plans in addition to our school-based epilepsy education and seizure first aid training programs.

Teen Weekend

We offer a Spring and Fall educational weekend specifically designed for teens with epilepsy, aged 12-17 who can manage their own medications. Visit our Teen Weekend Page for more information, upcoming dates, and registration information.

Contact Us

EAWCNY has epilepsy educators focused on providing information and support to children, adults, and families dealing with the challenges of epilepsy. Contact the epilepsy educator in your area if you have questions about epilepsy, seizures or wish to learn more about our services.

Western NY/Finger Lakes/Rochester

Michael Radell
Education Coordinator/Camp Director
Phone: (585) 442-4430 ext. 2741
Email: mradell@epiny.org

Central/Syracuse and Southern Tier/Binghamton Regions

Kristen Oderkirk, MSW
Community Educator
Phone: (315) 477-9777 ext. 2906
Email: koderkirk@epiny.org