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.

From Discovery to Delivery: How Science and Policy Are Shaping a New Era for Gene Therapy

Scientific advances in gene and cell therapy are moving fast. CRISPR-based therapies are being developed in record time to help children with life-threatening conditions. At the same time, new delivery approaches are making it easier to target the brain for neurological diseases. As the FDA and other regulators shift leadership and strategy, the entire landscape […]

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Why Can One Child Get a Groundbreaking Treatment – But Not Thousands Like Mine?

A recent medical breakthrough resulted in the successful treatment of a child with a rare genetic disorder with a personalized CRISPR gene editing therapy developed at lightning speed thanks to the work of researchers at Children’s Hospital of Philadelphia (CHOP). It’s the kind of story that brings hope to rare disease communities watching from the

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From Heartbreak to Hope: A Family’s Mission to Catch a Cure for Dravet Syndrome

I never imagined I’d become the parent of a child with a rare disease. I never pictured a life built around emergency medications, seizures, feeding tubes, IEP meetings and hospital rooms instead of family fishing trips, soccer practices, and play dates. But when our son Mason was diagnosed with Dravet syndrome at just seven months

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See the Difference You Made – 2024 DSF Annual Report Now Available!

At DSF, we are guided by a commitment to transparency, accountability, and connection to our community. Each year, our annual report is more than just a summary of numbers – it’s a story of the lives we’ve touched, the progress we’ve made, and the vision that continues to guide our mission. Our 2024 Annual Report

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DSF Receives Platinum Nonprofit Seal of Excellence

DSF is proud to announce that it has once again received the Platinum Seal of Transparency from Candid, the highest level of recognition offered by the nonprofit information platform formerly known as GuideStar. This prestigious designation underscores DSF’s ongoing commitment to transparency, accountability, and trustworthiness. Candid’s Seals of Transparency – Bronze, Silver, Gold, and Platinum

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