For families living with Dravet syndrome, progress can feel painfully slow. Seizures persist, comorbidities evolve, and the day-to-day realities remain complex. When you are in the middle of it, it’s hard to see change. And yet, when we take a step back, the progress in Dravet syndrome over the past two decades is truly extraordinary. […]
The Pace of Progress in Dravet Syndrome: Faster Than It Feels Read More »
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,
A Decade of Platinum: Our Commitment to Transparency and Accountability Read More »
This free multi-day event, hosted by the Rare Disease Legislative Advocates, a program of the EveryLife Foundation for Rare Diseases, brings together rare disease advocates from across the country to make their voices heard with their Members of Congress. Participants are educated on policy proposals impacting the rare disease community and provided opportunities to advocate
2026 Rare Disease Week on the Hill Read More »
When people with disabilities have access to essential health care and services, they can live on their own terms. Medicaid makes this possible. It provides critical health care and services to millions of children and adults with disabilities, so they can live healthier, fuller lives. Infants with disabilities get a strong start in life through
Protect Medicaid Services Read More »
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
A Warm Welcome to Our Newest Staff Member! Read More »
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
Registration is Now Open for the 2026 DSF Family & Professional Conference in Orlando! Read More »
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
How Will You Join Us in Building Momentum in 2026? Read More »
All of us at DSF are pleased to extend our heartfelt congratulations to Joseph Sullivan, MD, as he enters an exciting new phase of his distinguished career. After many years of dedicated clinical service at the University of California, San Francisco (UCSF), Dr. Sullivan has accepted the position of Vice President of Clinical Development at
Congratulations and Best Wishes to Dr. Sullivan! Read More »
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 »
