Dravet Syndrome Foundation (DSF) Announces 2026 Community Award Winners

DSF proudly honored community members whose leadership and unwavering commitment are driving meaningful progress for families living with Dravet syndrome.

ORLANDO , FL, UNITED STATES, June 29, 2026 /EINPresswire.com/ -- The 2026 Dravet Syndrome Foundation (DSF) Biennial Family & Professional Conference, held in Orlando, Florida, on June 25-27, brought together patient families, healthcare professionals, researchers, industry partners, and other key stakeholders from across the Dravet syndrome community. This conference serves as a unique forum for sharing the latest scientific advances, clinical insights, and lived experiences, while fostering collaboration among those committed to improving outcomes for individuals affected by Dravet syndrome. This year’s conference was made possible through the generous support of our supporters, including Presenting Sponsor, UCB, and Platinum Sponsors, Neurelis and Stoke Therapeutics.

At this year's conference, DSF proudly honored outstanding members of the community whose leadership, innovation, advocacy, and unwavering commitment are driving meaningful progress for families living with Dravet syndrome. Said CEO, Mary Anne Meskis, "The contributions of these individuals and organizations reflect the collaboration and commitment driving progress in the Dravet syndrome community. Their efforts are helping pave the way toward improved treatments, deeper understanding, and a better quality of life for those affected by Dravet syndrome.”

JIM AND ROSE BRENNAN RECEIVE THE "DSF IMPACT & LEGACY AWARD": This award is presented to individuals whose exceptional leadership within the DSF community has made a profound and lasting difference. This honor recognizes exemplary service, commitment, and a spirit of generosity that strengthens the entire community. Recipients serve as role models while building a legacy that uplifts others and advances the shared mission of DSF.

DSF proudly recognized Jim and Rose Brennan, the great aunt and great uncle of Anna, who lives with Dravet syndrome. Inspired by their love for Anna and deep commitment to her future, Jim, who is the President and Owner of McKelvey Homes, and his wife Rose mobilized family, friends, and their broader St. Louis community to create meaningful impact. Through their leadership - and alongside the incredible support of the entire Brennan and Odlaug families - they have raised over $3.857 million, fueling critical research and programs that bring hope to families affected by Dravet syndrome.

Although unable to attend in person, Jim and Rose shared their heartfelt gratitude through a special video message played during the ceremony. Their humility, dedication, and unwavering support continue to inspire the DSF community, and their legacy of compassion and action will be felt for years to come.

DANIEL CHANG AND DEB DORY CHANG RECEIVED THE "DSF INSPIRING LEADER AWARD": This award recognizes individuals whose dedication uplifts the DSF community and motivates others to lead with purpose. This award celebrates those whose contributions make a meaningful impact and whose leadership and integrity set a powerful example for all who work and volunteer alongside DSF.

DSF was deeply honored to present this year’s Inspiring Leader Award to Daniel Chang and Deb Dory Chang. Through their foundation, JAM for Dravet -established in loving honor of their son, Julian - they have transformed personal commitment into extraordinary action for the Dravet syndrome community.

Since 2021, Daniel and Deb have partnered closely with DSF to accelerate progress and expand opportunities in Dravet research. They have contributed more than $650,000 to DSF to fund collaborative research initiatives, driving forward critical scientific discoveries and fostering hope for families. Their passion, generosity, and steadfast commitment exemplify the spirit of this award and continue to inspire our entire community.

STOKE THERAPEUTICS RECEIVED THE "DSF CATALYST FOR CHANGE AWARD": This award recognizes an organization or individual whose bold vision, innovative thinking, and decisive action have meaningfully accelerated progress in the field of Dravet syndrome. This award celebrates those who do more than advance science - they help reshape what is possible for patients and families.

This year, DSF proudly presented the Catalyst for Change Award to Stoke Therapeutics in recognition of its outstanding contributions to the field of Dravet syndrome. Through a steadfast commitment to developing innovative therapies, Stoke Therapeutics has demonstrated strong and purposeful leadership, translating scientific discovery into real hope for families. Equally important, the company has consistently placed the patient voice at the center of its efforts. By actively engaging individuals and families affected by Dravet syndrome, Stoke ensures that lived experience informs clinical research, guides development strategies, and shapes decision-making at every stage.

Stoke Therapeutics’ dedication to advancing cutting-edge science while fostering authentic partnership with the community truly embodies the spirit of the Catalyst for Change Award.

MISTY RIED RECEIVED THE "DSF BUTTERFLY EFFECT AWARD": Presented to a staff member whose dedication and leadership have helped accelerate progress in the Dravet syndrome community, this year's recognition was awarded to Misty Ried, DSF's Campaign Director.

Misty joined DSF in December 2016 and has been an integral part of the organization’s growth and impact over the past decade. As she prepares to conclude her tenure with DSF at the end of this year, we are honored to recognize her extraordinary contributions and lasting legacy. Inspired by her son, Braxton, who lives with Dravet syndrome, Misty has worked tirelessly alongside families, volunteers, and community supporters to organize and support a wide range of fundraising events across the country throughout her 10 years with the Foundation. Her guidance and commitment have empowered countless event hosts to raise critical funds that directly support DSF’s research grants and family advocacy programs. Through her work, she has helped strengthen connections throughout the community while advancing DSF’s mission to improve the lives of those affected by Dravet syndrome.

Misty’s passion for the community, unwavering dedication, and ability to inspire others have made a profound impact on DSF and the families it serves. Her contributions have helped drive meaningful progress and her influence will continue well into the future.

About the Dravet Syndrome Foundation
Dravet Syndrome Foundation is a nonprofit organization dedicated to aggressively raising funds for Dravet syndrome research and increasing awareness of this rare and catastrophic form of epilepsy. Through research grants, community engagement, and strategic partnerships, DSF works to accelerate the development of therapies and ultimately find a cure.

Mary Anne Meskis
Dravet Syndrome Foundation
+1 203-392-1955
email us here

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