When a parent first hears the words “Dravet syndrome,” their world shifts. Suddenly, they’re navigating a life marked by uncertainty – one filled with overwhelming questions, fears, and very few clear answers. Out of that uncertainty, something remarkable has grown: a community that refuses to wait on the sidelines. Dravet Syndrome Foundation, or DSF, was born not just from hope, but from the urgent need to act.
Because of DSF’s commitment to driving research, what once felt out of reach is now within grasp. New therapies are not only being approved, they are also changing lives. And now, clinical trials for disease-modifying treatments offer real promise to tackle more than seizures alone. Each breakthrough represents a milestone: a child experiencing fewer seizures, a family rediscovering a sense of normalcy, and the relief that comes from finally seeing progress.
But DSF’s impact isn’t limited to labs and clinical trials. For families facing Dravet every day, support is just as critical as science. Through programs that provide everything from newly diagnosed kits to seizure monitors and peer connection through support groups, DSF walks alongside families from day one. These aren’t just services. They are lifelines, created by people who understand the emotional, financial, and practical challenges this diagnosis brings.
Since 2009, DSF has brought people together – parents, doctors, researchers, and advocates – turning individual struggles into a united mission. From awareness campaigns to family conferences, from caregiver webinars to research roundtables, this foundation is reshaping how Dravet syndrome is seen, studied, and treated.
This momentum isn’t accidental. It’s powered by strategy, collaboration, and heart. Our partnerships with hospitals, biotech companies, and research teams ensure that every effort moves us closer to a cure. And for most of our board and staff, this work is deeply personal. We are parents, grandparents, and loved ones of those living with Dravet syndrome. We take pride in our integrity, transparency, and commitment to making every dollar count.
DSF isn’t just changing the story of Dravet syndrome. It’s changing lives. And none of it would be possible without you. Behind every grant funded, every family supported, and every child given a brighter path forward – there is a supporter who made it happen.
Whether through making a donation, hosting an event, or advocating on policies that affect our community, we invite you to join us in driving progress and advancing the fight against Dravet syndrome. You can discover the impact of your support here.
Community. Research. Progress.
