The Epilepsy Leadership Council (ELC) is made up of individuals representing organizations serving individuals with epilepsy and their families, as well as professionals, and governmental organizations. The mission is to develop and coordinate among its members shared projects that will have a positive impact on the lives of individuals with epilepsy, focusing on those areas …
Epilepsy Alliance America, founded in 2018, is a growing national organization representing like-minded local, regional, statewide, and even other national agencies dedicated to serving the everyday needs of people who live with seizures and epilepsy every day. DSF is proud to be a nonprofit partner.
When the Dravet Syndrome Foundation was established in 2009, there were no specific treatments for patients with Dravet syndrome and limited guidelines on best treatment approaches. Despite the known genetic cause for the majority of cases, mutations in SCN1A, the idea of a genetic-based therapy seemed a distant possibility at that time. Things have changed …
Genetic Therapy for Dravet Syndrome: 2022 State of the Field Read More »
McCall was born August 28, 2018- perfectly healthy, without any complications. Four of the sweetest months later, still nestled in her car seat at her well check appointment, her arm began to rhythmically bounce up from her lap and fall back down. Her pediatrician immediately, but charily, slipped out of the room to call the …
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