Lorcaserin Enters Clinical Trials for Dravet Syndrome

By |2020-10-15T23:42:42-05:00October 16th, 2020|Categories: Decoding Dravet Blog|

Serotonin (5-HT) signaling has been a major focus of drug development targeting seizures in Dravet syndrome (DS) in recent years. For example, the community recently saw the FDA-approval of Fintepla (fenfluramine) as an adjunctive (add-on) therapy for DS. Fenfluramine had been a known anti-epileptic agent since the 1980’s, particularly utilized in Europe, but its marketing [...]

Dash for Dravet is BACK!

By |2020-10-06T13:19:41-05:00October 9th, 2020|Categories: Decoding Dravet Blog|

Here is your chance to get your family and friends together for our 5th annual Dash for Dravet on Turkey Day, and help raise funds to further research in Dravet syndrome and support the important programs of DSF!             This virtual 5K can be accomplished anywhere in the United States before, on or after Thanksgiving! Run, [...]

Our Mission. Our Community.

By |2020-10-01T08:55:53-05:00October 2nd, 2020|Categories: Decoding Dravet Blog|

If you are reading this blog, you are most likely already familiar with the Dravet Syndrome Foundation (DSF) and some of the work we do. You probably have some connection to our community, perhaps as a parent/caregiver, clinician, researcher, industry partner, or other supporter. But, have you ever read our mission statement? A mission statement [...]

ENVISION: A 2-year observational study of Dravet syndrome

By |2020-09-17T22:26:32-05:00September 18th, 2020|Categories: Decoding Dravet Blog|

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 challenges of these types of gene-based therapies entering human clinical trials is that a placebo-control approach [...]

Share the Patient Voice – Epilepsy Research Benchmarks

By |2020-09-10T16:19:06-05:00September 11th, 2020|Categories: Decoding Dravet Blog|

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 Centers co-sponsored a White House initiated conference, Curing Epilepsy: Focus on the Future. One of the [...]

EpyGenix Launches Phase II Trial for EPX-100

By |2020-09-07T00:12:10-05:00September 4th, 2020|Categories: Decoding Dravet Blog|

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 Phase I trials for EPX-100, establishing the safety of EPX-100 in healthy subjects and clearing the [...]

Free Concert Event – Joey’s Song!

By |2020-08-26T18:00:05-05:00August 28th, 2020|Categories: Decoding Dravet Blog|

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 from DSF, followed by the live stream of the concert. Tune in for this free event, [...]

DSF Strategic Plan 2020 Update

By |2020-08-17T14:29:48-05:00August 21st, 2020|Categories: Decoding Dravet Blog|

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 future. When a community is focused on the same outcomes, they become invested in a common [...]

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