Decoding Dravet Blog

Dravet Syndrome Foundation attended the 2025 American Epilepsy Society (AES) Annual Meeting in Atlanta on December 5th -9th, where we participated and engaged in educational sessions, networked with clinicians and scientists, discussed important community priorities with industry partners, and assessed progress in the research landscape. Dravet syndrome is a rare disease, and when DSF was […]

Dravet Syndrome Foundation (DSF) announced our 2025 Grant Awards last night at the 16th Annual Research Roundtable for eight outstanding projects totaling $1.725M. The addition of this funding brings the total amount DSF has directed to research to over $14M! DSF’s 2025 Grant Awards focus on a broad spectrum of priority topics including deepening the

For families living with Dravet syndrome, 2025 has been a year filled with moments of hope, progress, and connection. Our community has come together to celebrate not only scientific breakthroughs but also the bonds that make this difficult medical journey a little less daunting. Breakthroughs on the Horizon Imagine a child living with daily seizures,

What began as a simple 109-mile recreational bike ride through the scenic Black Hills has transformed into a mission that’s touching lives around the world — including two children right here in Hoven, South Dakota. The 3rd Annual Pedal for a Purpose, organized by lifelong childhood friends from Hoven, SD, Maria Weber Hartung, Brittany Rader

When Dravet Syndrome Foundation (DSF) began in 2009, it started with four parents and a bold vision: advance understanding of a little-known disease, create treatments where there were none, and fight for a cure for their children. Their drive didn’t come from institutional power or major medical backing—it came from desperation, hope, and an unwavering

Whether you’re new to the Dravet community or have walked this journey for years, chances are you’ve faced a season of stagnation. You know the feeling — when the things that once stirred your heart have become routine, almost background noise. Maybe it’s a new job that once filled you with excitement but now feels

On Sunday, November 2nd, a dedicated team of five runners will take on the iconic streets of New York City in the world-renowned NYC Marathon—all in support of Dravet Syndrome Foundation (DSF). Each mile they run represents the strength, hope, and determination of the Dravet community, and we’re proud to have them lacing up their

Despite having several FDA-approved therapies and clear treatment guidelines, the approach to treat seizures for Dravet syndrome can often be a repeating cycle of ‘trial-and-error’ as patients are placed on anti-seizure medications and then families must wait to assess the impact on seizure control over time. This method often takes months to determine whether a

DSF recently announced funding for a Longitudinal Dravet Syndrome Natural History Study led by Dr. Kelly Knupp with The Dravet Lifespan Multidisciplinary Clinic at Children’s Hospital Colorado. Today’s blog explores the importance of understanding the natural history of a disease, ways natural history data are collected, and an overview of some of the past and