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.

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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Looking for Brand Ambassadors to help further the mission of DSF!

In a world where social media is omnipresent, an organization and company’s need to create social media brand ambassadors within the platforms is becoming more and more apparent. In a global poll, Statista.com looked at social media users and where they get most of their news information. A whopping 48% of people in the United

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Join Us in Welcoming our New Family Network Ambassadors

We are so excited to announce the cohort of Family Network Ambassadors for the 2024-2025 term! These volunteers are all parents of children and adults with Dravet syndrome. Because of that they all possess the ability to truly empathize and understand the journey as a family living with, battling, and working through life with Dravet

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Investigating PBA as a Treatment for Epilepsy

The pipeline for new therapies to address Dravet syndrome in 2024 is encouraging. There are several ongoing clinical trials for potential new treatments and even more in development. In today’s blog I will highlight a compound that is being investigated in a variety of human diseases and some recent work demonstrating there may be potential

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Meredith Bankston Promoted to Event Coordinator

Dravet Syndrome Foundation (DSF) is excited to announce the promotion of Meredith Bankston to Event Coordinator. Meredith joined the organization in 2022 and has demonstrated dedication and skill in her previous role as Fundraising Assistant, leading to her advancement within the organization. In her new position, Meredith will play a crucial role in overseeing and

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