The Epilepsy Foundation’s mission is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives. They accomplish their mission through providing programs and services, promoting awareness, public advocacy, and research. The Epilepsy Foundation’s Epilepsy.com has volumes of information for families with epilepsy and clinicians. Epilepsy.com provides connections to other families with epilepsy--both via online and in your local community--and information--about new treatments and therapies, tips on seizure management, advocacy for people with epilepsy, new research, and more.
Citizens United for Research in Epilepsy (CURE), was founded by Susan Axelrod and a group of parents of children with epilepsy who wanted to protect their children from seizures and the side effects of medications. CURE's mission is to cure epilepsy, transforming and saving millions of lives. Since its inception in 1998, CURE has been at the forefront of epilepsy research, raising more than $40 million to fund research and other initiatives that will lead the way to a cure for epilepsy.
The mission of Finding a Cure for Epilepsy and Seizures (FACES) is to improve the quality of life for all those affected by epilepsy and seizures. FACES is affiliated with NYU Langone Medical Center and its Comprehensive Epilepsy Center and funds research to improve epilepsy care, advances new therapies, and fosters a supportive community for children, families and caregivers who live with the challenges of epilepsy.
The Epilepsy Genetics Initiative (EGI) is a new initiative created by the Citizens United for Research in Epilepsy (CURE), National Institute of Neurological Disorders and Stroke (NINDS), and Vogelstein Foundation to advance precision medicine in epilepsy. EGI has created a centralized database to hold the genetic data of people with epilepsy to attempt to identify the cause of the person’s epilepsy. If you are having genetic testing done, you could have your exome data contributed and studied at EGI.
The Epilepsy Phenome/Genome Project (EPGP) was an international research project from 2007-2014 that enrolled more than 4,000 people with epilepsy--1435 families with generalized or focal epilepsy, and 826 families with rare epilepsies. These families are being genotyped within the Epi4K project.