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.

15 Years of Connecting & Supporting Families

This year commemorates the 15th anniversary of DSF! We eagerly anticipate celebrating the initial 15 years of our impactful journey with you throughout 2024, sharing the highlights of what our community has accomplished through DSF: 15 years of funding groundbreaking research.  15 years of connecting and supporting families. 15 years of raising awareness of Dravet […]

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Updates on STK-001: A Possible Disease-Modifying Therapy for Dravet Syndrome

There have been some exciting data releases from Stoke Therapeutics regarding their Phase 1/2a trial for the investigational therapy, STK-001, that suggest this could be the first truly disease-modifying therapy for Dravet syndrome. Results indicate significant reductions in seizure frequency and notable improvements in measures related to behavior and cognition. In addition to a recent

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2023 Annual Report

I am proud to share our 2023 Annual Report that showcases the accomplishments of the year, made possible by the generosity of our donors. From our humble beginnings, the focus of DSF has remained steadfast – advancing our collective understanding of Dravet syndrome, providing support and advocacy, securing new treatments, and tirelessly working towards finding

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Making a Lasting Impact: The Power of Non-Cash Charitable Contributions for Dravet Syndrome

Dear Friends of Dravet Syndrome Foundation (DSF), In the journey of making a difference in the lives touched by Dravet syndrome, every contribution holds the power to bring about change, hope, and progress. While cash donations are always appreciated and put to good use, there’s a world of giving that goes beyond writing a check

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10 Reasons to Attend the DSF Family & Professional Conference  

I have attended two Dravet syndrome educational conferences – the first one was in 2010 in Connecticut, and the second one was DSF’s Family and Professional Conference in 2022 in Fort Worth, Texas. I learned so much at both conferences and made so many Dravet friends at both. As a parent of an adult with

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New Genetic Therapy for Dravet Syndrome Advances Towards Clinical Trials

Given the limited effectiveness of current therapies to treat Dravet syndrome and the significant burden of symptoms, much hope lies in the potential of targeted genetic therapies to treat Dravet syndrome at the root cause and modify the course of the disease. In the majority of cases, patients with Dravet syndrome carry mutations in the

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