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 […]
Celebrating a Year of Impact Read More »
Amanda Nehme-Clicerio brings a blend of professional marketing expertise and lived Dravet caregiver experience to her role as Marketing & Digital Communications Manager at the Dravet Syndrome Foundation (DSF). Based in New Jersey, she has spent nearly a decade in B2B marketing roles, building digital ecosystems, shaping brand stories, and translating complex information into clear,
Amanda Nehme-Clicerio – Marketing & Digital Communications Manager Read More »
Norman “Patrick” Robinson III passed away Monday December 1st at 7:45pm at Studer Children’s Hospital in Pensacola, FL. He was surrounded by his family with all the love and support they could offer. Born on March 11, 2009 in Panama City Fl. He spent the first half of his life in Panama City until we
Norman “Patrick” Robinson III Read More »
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,
A Year of Gratitude and Progress for the Dravet Community Read More »
What a dream come true! Sofie’s Journey awarded our family a scholarship to attend Epilepsy Awareness Day at Disneyland (EADDL) this year. We have talked about going for years now, but the thought of taking Zachary, our child with Dravet syndrome, to Disneyland gave me immediate anxiety. But after the last 2 years of him
Gemma Carvill is an Associate Professor in the Department of Neurology at Northwestern University. Her lab uses genomic technologies to define the molecular basis of epilepsy, including coding and non-coding variants. She integrates computational modeling with high-throughput assays of variant effect to understand which genetic variants cause epilepsy. Her work also leverages transcriptomics and epigenomics
Gemma Carvill, PhD Read More »
When your child is first diagnosed with Dravet syndrome, everything changes, instantly and profoundly. Life as you knew it shifts. Suddenly, your days are filled with unfamiliar medical jargon, emergency room visits, constant worry, and a deep, aching sense that no one truly understands what you’re going through. As a dad, that experience can be
Introducing a New Support Space for Dads Navigating Dravet Syndrome Read More »
From the Epilepsy Foundation on November 13, 2025: The longest partial government shutdown in history has ended after 43 days. On Monday, the Senate advanced the legislative package by a vote of 60-40 and then yesterday, the House of Representatives approved it by a vote of 222-209 and President Trump signed the bill into law late last night. Below,
Impact of a Federal Government Shutdown on the Epilepsy Community Read More »
When a parent first hears the words “Dravet syndrome,” their world shifts. Suddenly, they’re navigating a life marked by uncertainty – one filled with overwhelming questions, fears, and very few clear answers. Out of that uncertainty, something remarkable has grown: a community that refuses to wait on the sidelines. Dravet Syndrome Foundation, or DSF, was
Why the Work of DSF Matters Read More »
Over the past three blog posts (Week 1, Week 2, and Week 3), we’ve explored how the C.A.R.E. (Caring for Adults with Rare Epilepsy) Binder can support you in preparing for your loved one’s transition to adulthood and in planning for their long-term care needs. In our final week, I’m excited to introduce a new
Sibling Companion Guide for the C.A.R.E. Binder Read More »
