Decoding Dravet Blog

Caring for a loved one with Dravet syndrome can lead to significant medical expenses. We understand that the need for support can arise at various stages, and we’re here to help when it does. The DSF Patient Assistance Grant (PAG) Program is designed to help by providing financial aid for essential medical equipment, ensuring patients […]

The Dravet Syndrome Foundation (DSF) is excited to open applications for the 2025/2026 Brand Ambassador Program! From May 1 to May 15, individuals from around the world are invited to apply and take part in a mission that is as personal as it is powerful: raising awareness for Dravet syndrome. Currently, there are 10 dedicated

A recent publication in the journal of Science Translational Medicine revealed a groundbreaking new approach to a genetic therapy for Dravet syndrome. The new scientific approach was developed and validated through a collaboration between researchers at Allen Institute for Brain Science and University of Washington’s Seattle Children’s Research Institute. The gene therapy was tested in

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

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

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

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

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

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