Decoding Dravet Blog

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

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

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

Long-term outcomes for patients with Dravet syndrome can vary quite a bit. Some patients may have more significant impacts on cognition or speech, while others may struggle most with behavioral or sleep challenges. There can also be differences in the age of onset, the types of seizures that are present, the severity of seizures, and

As we embark on a new year, I encourage you to make the most of your involvement with DSF by exploring the various programs and engagement opportunities available in 2025. Remember our tagline: Community. Research. Progress. DSF offers something for everyone in our community, providing plenty of ways to get involved and make a difference!

DSF’s Day of Dravet Workshops are a time for patients and their families to come together to learn about research and treatment options, connect with one another, and be a part of a DSF’s shared vision for a better outcome for those affected by Dravet syndrome. They take place on opposite years of our biennial

We are excited to announce that DSF is launching its first Community Book Club and we can’t wait to share this experience with you! The book club will be led by Austin Watson, Family Network Coordinator. She has selected our first read, Microjoys: Finding Hope (Especially) When Life is Not Okay by Cyndie Spiegel. Austin