Epilepsy Resources

FACES – Finding a Cure for Epilepsy and Seizures

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NYU Langone’s Comprehensive Epilepsy Center offers a wide variety of resources for patients and families through Finding a Cure for Epilepsy and Seizures (FACES), an organization dedicated to improving the lives of children and adults with epilepsy and seizure disorders, and their families, through research, education, and clinical and community support programs.

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CareSource Transportation Services – available to insurance recipients for covered health care services

You need to be covered by CareSource to receive these benefits. (Assessed 9/5/2015)

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Cleveland Clinic

What you should know about mental health in youth with epilepsy.

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Danny Did Foundation

The Danny Did Foundation focuses on Epilepsy Awareness and SUDEP – Sudden Unexplained Death Due to Epilepsy. Many people with epilepsy die each year from SUDEP. Knowledge is power, so please check them out to learn more. SUDEP refers to deaths in people with epilepsy that are not caused by injury, drowning, or other known causes.1 Studies suggest that each year there are about 1.16 cases of SUDEP for every 1,000 people with epilepsy, although estimates vary.2

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Dravet Syndrome Foundation

Dravet Syndrome Foundation is a non-profit organization dedicated to aggressively raising research funds for Dravet syndrome, a rare and catastrophic form of epilepsy beginning in childhood, and related conditions. By offering research grants for syndrome-specific research with a novel approach, DSF can move researchers and the medical community forward to find better treatments and a cure while assisting afflicted individuals and their families.

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Driver Rehabilitation Program – Cleveland Clinic (Assessed 1/13/2019)

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Empowering Integrated Care Solutions

Approximately 40% of individuals with epilepsy struggle with a mental health issue. Our agency offers mental health and supportive services for individuals with epilepsy and other developmental disabilities. Our mission is to empower individuals to bridge the gap in their service needs. We approach care in an integrated model – medical, psychiatric, behavioral, supportive, and social issues are all addressed during treatment at the same time which improves outcomes for persons served. All of our services can be provided in the home, community, or our office.

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The International League Against Epilepsy

They hold International Epilepsy Day annually on the First Monday of February.

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The Charlie Foundation for Ketogenic Therapies

Learn more about the Ketogenic diet that doctors say helps lessen seizures. The first link is their home page. Here is their page with information on epilepsy: https://www.charliefoundation.org/ketogenic-therapy/therapies-2/epilepsy

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J Kiffin Penry Patient Travel Assistance

Provides reimbursement of travel expenses for eligible patients and their families who have had to travel more than 50 miles from their home to receive FDA approved medical care and/or treatment for their epilepsy/seizure disorder, but lack adequate financial resources to meet the cost of this travel without bearing financial hardship.

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Josh Provides

Josh Provides supplies valuable services to individuals and families living with epilepsy in order to maintain a better life.

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Neurology Now/Brain Life

A magazine with tons of information on living with epilepsy is published 6 times per year and mailed free to interested individuals. Complete the form on this page to subscribe.

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Rare Epilepsy Network – REN 

The Rare Epilepsy Network (REN) PPRN is an initiative created by and for patients with catastrophic rare epilepsies. The REN’s goal is to build a patient-centered and -driven database designed to provide the patients and their families an opportunity to participate in research that will improve the lives and quality of care for people with rare epilepsies.

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Social Security Disability

The Social Security and Supplemental Security Income disability programs are the largest of several Federal programs that provide assistance to people with disabilities. While these two programs are different in many ways, both are administered by the Social Security Administration and only individuals who have a disability and meet medical criteria may qualify for benefits under either program.

• Social Security Disability Insurance pays benefits to you and certain members of your family if you are “insured,” meaning that you worked long enough and paid Social Security taxes.

• Supplemental Security Income pays benefits based on financial need.

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​​Common Mistakes After Receiving a Denial of Social Security Disability or SSI Benefits:

If you have epilepsy and have been denied Social Security Disability, here are resources from the Social Security Resources Center to guide you in the next steps you need to take to help get your claim approved.