Decoding Dravet Blog

Looking ahead to the coming year, we are committed to building on the momentum our community has created. With your support, we will broaden our efforts, deepen our impact, and continue moving our mission forward. Thank you for being part of our story – we need your help to continue this work. With potentially disease-modifying […]

As the year comes to a close, I wanted to take a moment to reflect on what you helped make possible, and to thank you for your continued commitment to the Dravet patient community and DSF. Thanks to our extraordinary community of supporters, this year was one of progress, impact, and meaningful change. Through our

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