Decoding Dravet Blog

For several years, one of DSF’s programs has been our Family Network Ambassador (FNA) Program. This program is made up of veteran Dravet parents who come together to support our foundational mission: To aggressively raise funds for Dravet syndrome and related epilepsies; to support and fund research; increase awareness; and to provide support to affected […]

Please join us in welcoming our new Marketing Manager & Digital Communications Manager, Amanda (Mandy) Nehme-Clicerio.  Mandy brings a blend of professional marketing expertise and lived Dravet caregiver experience to her role as Marketing & Digital Communications Manager at DSF. Based in New Jersey, she has spent nearly a decade in B2B marketing roles, building

We’re excited to share that registration is now open for the 2026 Dravet Syndrome Foundation (DSF) Family & Professional Conference, taking place June 25–27 in Orlando, Florida! This much-anticipated biennial event brings together families, caregivers, clinicians, researchers, and industry partners for several inspiring days of learning, connection, and community. Whether you are a parent navigating

Looking ahead to the coming year, we are committed to building on the momentum our community has created. With your support, we will broaden our efforts, deepen our impact, and continue moving our mission forward. Thank you for being part of our story – we need your help to continue this work. With potentially disease-modifying

As the year comes to a close, I wanted to take a moment to reflect on what you helped make possible, and to thank you for your continued commitment to the Dravet patient community and DSF. Thanks to our extraordinary community of supporters, this year was one of progress, impact, and meaningful change. Through our

Dravet Syndrome Foundation attended the 2025 American Epilepsy Society (AES) Annual Meeting in Atlanta on December 5th -9th, where we participated and engaged in educational sessions, networked with clinicians and scientists, discussed important community priorities with industry partners, and assessed progress in the research landscape. Dravet syndrome is a rare disease, and when DSF was

Dravet Syndrome Foundation (DSF) announced our 2025 Grant Awards last night at the 16th Annual Research Roundtable for eight outstanding projects totaling $1.725M. The addition of this funding brings the total amount DSF has directed to research to over $14M! DSF’s 2025 Grant Awards focus on a broad spectrum of priority topics including deepening the

For families living with Dravet syndrome, 2025 has been a year filled with moments of hope, progress, and connection. Our community has come together to celebrate not only scientific breakthroughs but also the bonds that make this difficult medical journey a little less daunting. Breakthroughs on the Horizon Imagine a child living with daily seizures,