Helping you to learn about the past, present, and future of Dravet syndrome and the Dravet Syndrome Foundation. The Decoding Dravet 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.
Around 1 in 5 children with my 6-year-old’s rare form of epilepsy die in childhood. I am regularly reminded of this reality when other caretakers in a Dravet Syndrome Foundation online support group post that they lost their precious child. Just last week, a parent posted about her young daughter dying from a seizure. I can’t help […]
As we gear up for June and Dravet Syndrome Awareness Month, we are excited to announce our annual T-shirt fundraiser! Every year, supporters rally together to raise awareness and much-needed funds for research into Dravet syndrome. Raising awareness about Dravet syndrome is crucial for improving understanding, fostering community support, and ultimately advancing research efforts that
Supporting Dravet Syndrome Awareness: Join Our Annual T-Shirt Fundraiser Read More »
For nearly 25 years now we have known that mutations in the sodium channel gene, SCN1A, can lead Dravet syndrome and related epilepsies. Since the initial discovery, over 1,700 unique mutations occurring across the length of the large SCN1A gene have been identified in patients with Dravet syndrome. The awareness and availability of genetic testing
The Genetics of Dravet Syndrome Read More »
Currently, the ARGUS Trial is enrolling participants with Dravet syndrome to evaluate if Clemizole (EPX-100) can reduce the number of seizures. Clemizole has a long history, from its use as an antihistamine to the exciting discovery (in zebrafish!) that it may be effective at reducing the number of seizures in Dravet syndrome. Today’s blog delves
Discovery in Fish Leads to a Clinical Trial for Dravet syndrome Read More »
This is an exciting time for the Dravet syndrome community. The first potentially disease-modifying treatment targeting the genetic cause of Dravet syndrome has completed initial human studies and is now advancing to a pivotal global Phase 3 trial. If the study confirms that this therapy is safe and effective, the next step will be seeking
Zorevunersen (STK-001) FAQs: Spotlight on the Upcoming Phase 3 Studies Read More »
DSF is pleased to share information about a new free platform developed by UCB, with input from the Dravet syndrome and Lennox-Gastaut syndrome patient communities: Developed with caregivers, for caregivers, CareCompass is now available for families and caregivers of individuals with Dravet syndrome. This digital care platform is designed to simplify the caregiving journey and
CareCompass: A New Resource to Navigate Caregiving Read More »
Several members of the Dravet syndrome community went to Washington, D.C. last week (February 24-26, 2025) to participate in Rare Disease Week on Capitol Hill. This event, sponsored by EveryLife Foundation for Rare Diseases / Rare Disease Legislative Advocates, was a great opportunity for us to learn more about issues that impact our community and
Dravet Syndrome Community Participates in Rare Disease Week on Capitol Hill Read More »
On your mark. Get set. Give up your cup – again! #GiveUpYourCup kicks off this Saturday, and thanks to supporters like you, we’ve made incredible progress in funding life-changing research. Your participation last year is fueling critical studies today, bringing us closer to a cure. Will you join us again? Three easy ways to
One Less Cup. One Big Difference. Read More »
Dravet Syndrome Foundation (DSF) was established in 2009 with a mission largely focused on funding and advocating for Dravet-related research. To date, DSF has directed over $10.5 million to support research. DSF’s Research Grant Programs provide essential funding for research focusing on Dravet syndrome and related disorders. These grants support early-stage research endeavors exploring hypotheses
Understanding Why Federal Funding for Research is Important for Dravet Syndrome Read More »
At DSF, we understand that keeping up with the quickly evolving changes happening right now can feel overwhelming as you try to determine what the impacts could be on your loved one with Dravet syndrome. We are committed to keeping our patient community informed about legislative actions affecting Medicaid and rare disease research, which are
