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 programs, every life we reached and every milestone we achieved happened because people like you believed in our mission and chose to stand with us.
What We Achieved Together This Year
Thanks to your generosity and commitment, here’s what we accomplished in 2025:
- Funded over $3.5M in research grants: In 2025, we invested more than $3.5 million across 12 strategic grants to accelerate progress and improve outcomes for individuals and families affected by Dravet syndrome. Learn more.
- Hosted five Day of Dravet workshops: We hosted five regional Day of Dravet workshops, bringing together more than 500 participants representing 123 patient families. Through education, collaboration, and meaningful partnerships, these gatherings strengthened connections, shared knowledge, and empowered families. Learn More.
- Recruited for the Dravet Syndrome Genome Study: We helped to advance research by actively recruiting participants for the Dravet Syndrome Genome Study, helping to expand the scientific understanding needed to drive future discoveries and therapies. Learn more.
- Launched our Legislative Advocacy Initiative: We launched this new initiative to elevate the voices of the Dravet community and advance policies that improve access, care, and support at the state and federal levels. Learn more.
- Created the DSF Health Equity Committee: We deepened our commitment to health equity by establishing the DSF Patient Equity and Inclusion Committee, ensuring that equity, access, and representation are embedded in our programs and decision-making. Learn more.
- Invested in the future: We supported staff, trained volunteers, and upgraded systems to ensure our long-term success and accountability.
It has been a true privilege to be part of this remarkable community and to do this work alongside you. With your partnership and support, we are witnessing advances in the field of Dravet syndrome that would have seemed unimaginable when my son was diagnosed 20 years ago. At that time, hope looked very different. Today, science is moving at a pace far faster than we ever dared to expect, translating discovery into meaningful progress for families. This acceleration has been made possible by a united, committed community of stakeholders—families, clinicians, researchers, industry partners, and advocates—working together with a shared sense of urgency and purpose. Because of this collective effort, we are not only moving faster, but moving forward together.
Your year-end donation is more than a gift – it is an investment in the essential programs and lasting impact that enable us to plan boldly for the future and ensure that no one we serve is left behind. We are deeply grateful to have you as a part of our community.
