Decoding Dravet Blog

On Sunday, November 2nd, a dedicated team of six 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

When your child is first diagnosed with Dravet syndrome, everything changes, instantly and profoundly. Life as you knew it shifts. Suddenly, your days are filled with unfamiliar medical jargon, emergency room visits, constant worry, and a deep, aching sense that no one truly understands what you’re going through. As a dad, that experience can be

DSF’s 2025 Day of Dravet regional workshops provided the opportunity for patient families to come together to learn, connect, and feel supported. While many of our patient families are already connected through social media, the opportunity to connect in person is especially meaningful. Over 500 community members participated at these workshops!  It was incredible to

Grief is a complicated, heavy, and big emotion. And it is never so heavy as when someone we love dies. Especially when that death is the death of a child. When a death happens we move into a phase of acute grief –  grief that is typically tied to a specific event. When we are

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

Starting out as the Health Equity Coordinator for the Dravet Syndrome Foundation (DSF), I knew I wanted DSF to be a place where everyone belongs and feels accepted, no matter where you come from or what language you speak. As a parent of a daughter with Dravet syndrome myself, some of the most cherished friendships

Over the past three blog posts (Week 1, Week 2, and Week 3), we’ve explored how the C.A.R.E. (Caring for Adults with Rare Epilepsy) Binder can support you in preparing for your loved one’s transition to adulthood and in planning for their long-term care needs. In our final week, I’m excited to introduce a new

In our last two blog posts (Week 1 and Week 2), we’ve explored how the C.A.R.E. (Caring for Adults with Rare Epilepsy) Binder can support you in preparing for your loved one’s transition to adulthood and planning for their long-term care. This week, we’re focusing on some key information you’ll want to start documenting when