Dravet Syndrome Foundation

📣 Phase 3 trials for zorevunersen (STK-001)—a treatment targeting the genetic cause of Dravet syndrome—are expected to begin this summer. We know families have questions. What is zorevunersen? Who can participate in the Phase 3 EMPEROR Study? When will this treatment be available outside of clinical trials, and who will have access? We’ve created an in-depth FAQ to help you understand where things stand, what’s next, and what it could all mean for the future of Dravet syndrome care. DSF will continue to share updates as more details become available. 🦋 Read the full FAQ blog: https://bit.ly/41EZtZe #CureDravet #DravetSyndrome

🚨 Don’t miss out! 🚨 March is flying by, and so is our 30% off sale on select DSF merchandise! 🛍️ Every purchase helps fund research, advocacy, and support for families impacted by Dravet syndrome. Stock is limited, and the sale ends March 31st, so grab your favorites before they’re gone! 💜 Shop now ➡️ https://bit.ly/3Dk3eLx

💜 This past weekend, several members of the Dravet syndrome community proudly participated in the National Walk for Epilepsy in Washington, D.C., alongside 2,300 others in the epilepsy community! 👟✨ It was inspiring to see so many industry and patient organization partners come together in support of the 3.4 million Americans living with epilepsy. A huge thank you to our partners UCB, Jazz Pharmaceuticals, Neurelis, Inc., and Harmony Biosciences for joining us in this meaningful event! 🙌💜 Couldn’t make it but still want to make a difference? 📢 Take action today by urging your members of Congress to support the National Plan for Epilepsy! 💪🏛 ➡️ https://bit.ly/4kGZFjw #AdvocateForDravet #CureDravet

🔬 Team DSF at ASENT 2025! This week, several members of Team DSF spoke on a panel at the American Society For Experimental Neurotherapeutics (ASENT) Annual Meeting in Bethesda, MD. Alongside Annie Kennedy from the EveryLife Foundation for Rare Diseases and Parisa Sanandaji from Stoke Therapeutics, they joined the discussion “A Broader Look at Patient-Focused Drug Development”, highlighting how DSF ensures the patient voice is central to advancing new treatments. A key part of the discussion focused on DSF’s strong partnership with Stoke Therapeutics and how collaboration is driving progress in research and drug development. ASENT brings together top scientists, clinicians, industry leaders, and policymakers to explore the latest in gene therapy, biomarkers, and drug development. By being part of these conversations, we’re ensuring that the needs of the Dravet syndrome community remain a priority. We’re here to learn, collaborate, and advocate for life-changing therapies. Stay tuned for more updates! #Curedravet #AdvocateForDravet #EpilepsyResearch #PatientAdvocacy

💜 Only 5% of the 30 million people in the U.S. with a rare disease have an FDA-approved treatment. Thanks to relentless advocacy from the Dravet syndrome community, we now have three approved medications—but our work is far from over. Last week, Dravet families took their voices to Capitol Hill for Rare Disease Week, pushing for policies that drive medical research, expand access to specialists, and improve resources for our community. Every breakthrough we achieve is fueled by the strength of families, researchers, and advocates like you. Read about our trip to Washington, D.C., and learn how you can make an impact—no matter where you live: https://bit.ly/4iuDjQ3 #AdvocateForDravet

📣 LIVE from Capitol Hill! 💜🏛️ The Dravet Syndrome Foundation is proud to be at #RareDC2025, ensuring the voices of those affected by Dravet syndrome and rare epilepsies are heard loud and clear! 🗣️ We’ve spent the past few days connecting with lawmakers, sharing our stories, and pushing for critical policy changes that will improve care, research, and resources for the rare disease community. A huge thank you to EveryLife Foundation for Rare Diseases for bringing together passionate advocates from across the country to make an impact! Thank you to UCB and Jazz Pharmaceuticals for supporting our legislative advocacy program. 💜 How can you help? ➡️ Raise your voice: Contact your Members of Congress and urge them to support rare disease policies. ➡️ Spread awareness: Share this post and let others know why rare disease advocacy matters. ➡️ Show your support: Drop a 💜 in the comments if you stand with us! Together, we can drive real change! Join us in advocating for a better future: https://bit.ly/41xU73a #RareDC2025 #AdvocateForDravet #RareDiseaseWeek

The path to effective treatments and potential cures for Dravet syndrome is built on research, much of which depends on federal funding. DSF-funded researchers have gone on to secure over $35 million in NIH grants, highlighting how critical this support is in advancing science. However, recent budget cuts threaten to disrupt the progress that has been made. Families affected by Dravet syndrome cannot afford these setbacks. Now, more than ever, advocacy is essential to ensure continued investment in life-changing research. Read the full blog to learn how these budget reductions could impact Dravet syndrome research—and how you can take action: https://bit.ly/432bfiE #AdvocateForDravet #CureDravet

💜 Your Sample Can Unlock Breakthroughs! 💜 The Dravet Genome Study is on a mission to uncover the why behind Dravet syndrome—why symptoms vary, why treatments work differently, and how we can create more personalized therapies for our loved ones. 🚀 We’re closing in on our goal of 500 participants! 303 families have already joined—will you be next? 📢 Your participation is simple but powerful. Every sample is a vital piece of the puzzle, moving us closer to life-changing discoveries. And the best part? You can contribute from the comfort of your home! 💜 Be part of the future of Dravet syndrome research. Learn more and sign up today: https://lnkd.in/gngYprZG #DravetSyndrome #DravetResearch #EverySampleMatters

Legislative changes can have a direct impact on the disabled and rare disease communities, including those affected by Dravet syndrome. Proposed policies and budget cuts could significantly affect our loved ones' lives, making it more important than ever to stay informed and take action. To support our community, we’ve launched a Legislative Advocacy page on our website, highlighting key policy changes that could impact us. Plus, this week’s Decoding Dravet blog dives into meaningful ways to get involved and advocate for change. Blog: https://bit.ly/40ZUQsh Legislative Advocacy page: https://bit.ly/4hIaf7O #AdvocateForDravet #CureDravet