Decoding Dravet Blog

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

In last week’s blog post, we introduced the C.A.R.E. (Caring for Adults with Rare Epilepsy) Binder and how it can help with transition planning. In this week’s blog, we’re diving into how to get started with the C.A.R.E. Binder, along with the next steps to help you make the most of it. When beginning the

With the constant care demands of your loved one with Dravet syndrome, it’s understandable that transition planning might not even be on your radar. Transitioning to adulthood is a complex, often overwhelming, and deeply emotional process. The journey can look very different from one household to the next, as each young adult’s abilities, needs, and future

With the recent passage of HR 1 by Congress, rare disease communities – including Dravet syndrome – are seeking clarity on how the new legislation may impact their loved ones and families, particularly in areas such as access to care, insurance coverage, and treatment affordability. One of the programs most impacted from these major policy