Decoding Dravet Blog

March is here – and that means it’s time for one of our simplest (and most fun) virtual fundraisers of the year: Give Up Your Cup! This March, the Dravet Syndrome Foundation (DSF) is inviting YOU to turn a small daily habit into a big impact for families living with Dravet syndrome. What Is Give […]

In 2025, DSF launched a new program with the hope of connecting parents in a fresh and creative way: the Community Book Club. This virtual club invites parents to join in a shared experience—reading a book and then coming together in real time to talk about it. And now, we are excited to launch the

When my son was first diagnosed with seizures (even before his Dravet diagnosis which came several years later in 2015), I felt so alone in what my husband and I were going through with our son. I knew no other families in our situation at that time and felt like our own families had no

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