Decoding Dravet Blog

Helping you to learn about the past, present, and future of Dravet syndrome and the Dravet Syndrome Foundation. The Decoding Dravet Blog will keep you up to date on current research, treatment options, advocacy efforts, community activities, and other topics that are important to the Dravet syndrome community.

DSF-Funded Study Aims to Change the “Trial-and-Error” Approach to Treatment for Dravet Syndrome

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

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Longitudinal Insights: Gathering Natural History Data for Dravet Syndrome

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

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Introducing a New Support Space for Dads Navigating Dravet Syndrome

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

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That’s a Wrap on the 2025 Day of Dravet Workshops!

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

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