Decoding Dravet Blog

One mom’s stories of elopement and how we have dealt with it. “Elopement” or wandering off is a common problem with Dravet children and adults. My 32-year old son, Brian, has eloped on so many occasions that I have lost count. Let me share a few incidents that stick out in my mind and what […]

This year marks an important milestone for the Dravet Syndrome Foundation (DSF): ten consecutive years of earning the Platinum Seal of Transparency from Candid (formerly GuideStar). While seals and ratings are never the reason we do our work, this recognition reflects something that has always been fundamental to our mission – our commitment to transparency,

We had an incredible group of Dravet syndrome parents and grandparents in Washington, D.C. last week (February 24-27, 2026) to participate in Rare Disease Week on Capitol Hill!  This event, sponsored by EveryLife Foundation for Rare Diseases / Rare Disease Legislative Advocates, was a great opportunity for us to learn more about issues that impact

As the grandfather of a girl with a rare disease, I’ve learned that for families like ours, hope often comes not as a cure, but as a clinical trial: carefully designed but inevitably exclusive. My granddaughter Anna has Dravet syndrome, a catastrophic childhood epilepsy most often caused by mutations in the SCN1A gene. Like many

Dravet Syndrome Foundation (DSF) us dedicated to funding research that will move new treatments forward and improve the quality of life for those living with Dravet syndrome (DS). Sometimes research progress can feel slow or incremental, but DSF works closely with the patient community and experts in research to identify gaps in knowledge where DSF

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