Decoding Dravet
Helping you to learn about the past, present, and future of Dravet syndrome and the Dravet Syndrome Foundation. This blog will keep you up to date on current research, treatment options, advocacy efforts, community activities, and other topics that are important to the Dravet syndrome community.
Lend Your Voice to Research
Why should you keep filling out surveys about life with Dravet syndrome? Repeated requests to fill out surveys can start to feel repetitive and when results take months or years to be released, it may feel like your input [...]
ENVISION: A 2-year observational study of Dravet syndrome
The Dravet syndrome community has long been awaiting gene therapy approaches to provide true disease-modifying treatments. We now watch optimistically as new therapies are in final stages of pre-clinical development or are beginning early-phase clinical trials. One of the [...]
Share the Patient Voice – Epilepsy Research Benchmarks
Twenty years ago, in March 2000, the National Institute of Neurological Disorders and Stroke (NINDS) along with the American Epilepsy Society (AES), Citizens United for Research in Epilepsy (CURE), the Epilepsy Foundation, and the National Association of Epilepsy Research [...]
EpyGenix Launches Phase II Trial for EPX-100
EpyGenix Therapeutics, in partnership with Greenlight Clinical, is currently enrolling a Phase II, multicenter, randomized, double-blind, placebo-control clinical trial for EPX-100 (Clemizole Hydrochloride, oral solution) in children diagnosed with Dravet syndrome. In January 2020, Epygenix announced the completion of [...]
Free Concert Event – Joey’s Song!
DSF is honored to partner with Joey’s Song for this year’s Remote & Uncontrolled virtual concert. Mark your calendars and tune in to our webpage at 7:50pm est on Wednesday, September 16th! Our evening will begin with a welcome [...]
DSF Strategic Plan 2020 Update
Strategic planning for a nonprofit organization such as the Dravet Syndrome Foundation (DSF) is an important investment of time and resources that provides enormous benefits. It brings clarity and agreement on the organization’s mission and allows preparation for the [...]