Dravet Syndrome Foundation honors 2026 community award winners

The Dravet Syndrome Foundation recognized four people and one company at its 2026 Family & Professional Conference in Orlando, Fla., highlighting fundraising, research support and community leadership in the fight against Dravet syndrome. DSF said the honorees have helped advance treatment development, advocacy and family support for the rare epilepsy disorder.

Why it matters: - DSF used its 2026 conference to spotlight people and organizations helping fund research and support families living with Dravet syndrome. - The awards reflect how patient-led fundraising, research partnerships and community advocacy are shaping progress for a rare and severe form of epilepsy.

What happened: - The Dravet Syndrome Foundation held its Biennial Family & Professional Conference in Orlando, Florida, on June 25-27. - DSF recognized community award winners at the conference for leadership, innovation, advocacy and fundraising. - The event brought together patient families, healthcare professionals, researchers, industry partners and other stakeholders from across the Dravet syndrome community. - DSF said the conference was supported by Presenting Sponsor UCB and Platinum Sponsors Neurelis and Stoke Therapeutics. - CEO Mary Anne Meskis said the honorees’ efforts are helping drive improved treatments, deeper understanding and better quality of life for people affected by Dravet syndrome.

The details: - Jim and Rose Brennan received the DSF Impact & Legacy Award. - DSF honored the Brennans for leadership that helped mobilize family, friends and the wider St. Louis community around Anna, their great niece, who lives with Dravet syndrome. - Jim Brennan is president and owner of McKelvey Homes. - The Brennans, alongside the Brennan and Odlaug families, have raised more than $3.857 million for Dravet syndrome research and programs. - Daniel Chang and Deb Dory Chang received the DSF Inspiring Leader Award. - The Changs created JAM for Dravet in honor of their son, Julian. - Since 2021, the Changs have worked with DSF to expand Dravet research and have contributed more than $650,000 to fund collaborative research initiatives. - Stoke Therapeutics received the DSF Catalyst for Change Award. - DSF said Stoke Therapeutics has advanced innovative therapies and centered patient and family input in its research and development work. - Misty Ried received the DSF Butterfly Effect Award. - Ried is DSF’s campaign director and joined the organization in December 2016. - DSF said Ried will conclude her tenure at the end of this year. - Ried’s work has focused on organizing and supporting fundraising events nationwide over the past 10 years. - DSF said those efforts have helped raise funds for research grants and family advocacy programs.

Between the lines: - DSF’s awards show how much of the organization’s progress depends on volunteer leadership, family fundraising and industry collaboration. - The recognition of a therapeutics company alongside family advocates suggests DSF wants to keep research, development and lived experience closely connected. - The scale of the fundraising totals shows how individual families can have outsized influence on rare-disease research.

What's next: - DSF will continue pursuing research funding, community engagement and strategic partnerships to accelerate therapies for Dravet syndrome. - Ried’s departure at the end of the year will close a decade-long run of event-building and fundraising work for the foundation. - DSF said its broader goal remains finding a cure for Dravet syndrome.