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2026 Ciara’s Spirit of Hope Award Nominations Now Open!
We invite you to nominate an individual whose dedication and volunteerism with DSF has been truly outstanding and inspiring! From 2010 to 2015, the Spirit ...
The Pace of Progress in Dravet Syndrome: Faster Than It Feels
For families living with Dravet syndrome, progress can feel painfully slow. Seizures persist, comorbidities evolve, and the day-to-day realities remain complex. When you are in ...
Elopement Happens
One mom’s stories of elopement and how we have dealt with it. “Elopement” or wandering off is a common problem with Dravet children and adults. ...
A Decade of Platinum: Our Commitment to Transparency and Accountability
This year marks an important milestone for the Dravet Syndrome Foundation (DSF): ten consecutive years of earning the Platinum Seal of Transparency from Candid (formerly ...
DSF Advocates at Rare Disease Week on Capitol Hill
We had an incredible group of Dravet syndrome parents and grandparents in Washington, D.C. last week (February 24-27, 2026) to participate in Rare Disease Week ...
My granddaughter has a rare disease. But clinical trials often exclude patients like her.
As the grandfather of a girl with a rare disease, I’ve learned that for families like ours, hope often comes not as a cure, but ...
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