Dance for Dravet raises $1.2M for research and family support

Dravet Syndrome Foundation’s 8th annual Dance for Dravet brought in $1.2 million on Oct. 9 in St. Louis, setting a new fundraising record for the gala. The money will support Dravet syndrome research, family programs and work at Washington University as the group pushes for better treatments and a cure.

Why it matters: - The $1.2 million haul will help fund Dravet syndrome research, advocacy and family support programs. - The gala also adds money for research at Washington University in St. Louis, strengthening local scientific work on a rare and severe epilepsy disorder. - Dravet Syndrome Foundation is the world’s largest nongovernmental funder dedicated to Dravet syndrome research. - Since 2009, the foundation has invested more than $14.1 million in research grants. - DSF-funded research has helped move the field from no approved Dravet-specific treatments to three available treatments.

What happened: - Dance for Dravet raised $1.2 million at the 8th annual event hosted by the Brennan and Odlaug families. - The gala took place Oct. 9 at Third Degree Glass Factory in St. Louis. - More than 400 guests attended, including families affected by Dravet syndrome, advocates and longtime local supporters. - Jim Brennan, owner of McKelvey Homes, said the event broke the previous fundraising record and remains the nation’s largest fundraiser for the foundation.

The details: - McKelvey Homes served as presenting sponsor. - Platinum sponsors included Centered Partners, The Builder Collaborative, Great Southern Bank, Greenleaf Gallery, R&R, Royal Highnies, Simmons Bank and Urban Chestnut Brewing. - Families including the Brennans, Odlaugs, Travers, Bakers, Easterlings, Nelsons and Smiths also supported the gala. - The live auction offered exclusive experiences, including a private jet trip to Disney with VIP tickets, ski trips, hunting trips and golf outings at private country clubs. - The program featured Anna Odlaug’s medical story, highlighting the challenges families face and the progress made when communities rally around research. - Tom Ackerman, sports director at KMOX Radio, served again as master of ceremonies. - Guests ended the evening with dancing, music from the J-Rob Quartet and desserts from Tim Brennan of Cravings.

Between the lines: - The event shows continued local momentum behind a rare-disease cause that depends heavily on private fundraising. - The emphasis on research, support services and advocacy suggests DSF is trying to address both day-to-day family needs and long-term treatment development. - The foundation’s note about therapies that go beyond seizure control points to a broader unmet need in Dravet care. - The St. Louis community’s repeat support appears central to the event’s ability to keep setting records.

What's next: - DSF will direct gala proceeds to research, patient assistance, educational programs, family support and advocacy. - A portion of the money will go to Dravet syndrome research at Washington University in St. Louis. - The foundation says it will continue pushing toward better treatments and, ultimately, a cure. - More information is available at dravetfoundation.org.