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The Global Down Syndrome Foundation is facing two potential financial setbacks as its annual AcceptAbility Gala approaches: declining ticket sales and donations, along with possible federal cuts to Down syndrome research.
Michelle Sie Whitten, the nonprofit’s president and CEO, said sales of gala tables and individual tickets are down this year. She attributed the broader decline in philanthropy partly to economic uncertainty and the elimination of thousands of federal government jobs.
“We want people to support the gala,” Whitten said, calling for donations, ticket and table purchases, and volunteers.
The 2025 gala will begin at 6 p.m. May 21 at the Marriott Marquis in Washington, D.C. The program includes a reception, red carpet, three-course dinner, live auction, performances by local dancers with Down syndrome, and an appearance by multiplatinum musician and actor Phillip Phillips.
Chuck Todd, host of “The Chuck ToddCast” and former moderator of “Meet the Press,” will serve as an emcee alongside Emmy Award-winning former WJLA anchor Autria Godfrey.
Research gains face uncertainty
The fundraising slowdown comes as Whitten warns that National Institutes of Health support for Down syndrome research could also be cut.
That funding expanded through the INCLUDE Project, short for Investigation of Co-occurring Conditions across the Lifespan to Understand Down Syndrome. The NIH launched the initiative in June 2018 after Congress called for research into critical health and quality-of-life needs among people with Down syndrome.
Whitten said advocacy efforts produced a major shift beginning in 2017, moving Down syndrome from what she described as the NIH’s most underfunded genetic condition into a stronger research priority.
She said continued medical research is particularly important as people with Down syndrome grow older. Their average lifespan has doubled from about 30 years to 60, increasing the need for better care across their lives.
Advocates stress the stakes
Down syndrome self-advocate David Egan pointed to his own near-death experience with COVID-19 and long COVID while discussing the importance of NIH-supported research. He also noted that Virginia lacks Down syndrome clinics and said patients need stronger healthcare support.
Egan is the author of “More Alike Than Different: My Life with Down Syndrome.” His advocacy has included serving on Capitol Hill as a Joseph P. Kennedy Jr. Foundation Public Policy Fellow with the House Ways and Means Committee, testifying before the Senate HELP Committee, and speaking at the United Nations. He is also a Special Olympics athlete and a recipient of the Quincy Jones Award.
Fellow self-advocate Frank Stephens emphasized the importance of research funding, public education, and the gala. This year’s event will honor his mother, Cornelia “Corny” Stephens, who died from Alzheimer’s disease in January.
Stephens has advocated publicly against use of the slur “retard” and has spoken about wanting the same opportunity as anyone else to contribute his abilities to society. He also participates in Special Olympics golf, basketball, track, and horseback riding.
“I don’t need to be cured or pitied,” Stephens said. “I need to be given the opportunity to be the best person I can be and contribute my talents to making this a better world for everyone.”
The gala will also recognize two members of Congress with GLOBAL’s highest honor: Republican Rep. Robert Aderholt of Alabama and Democratic Rep. Diana DeGette of Colorado.
Tickets begin at $700, with proceeds supporting Down syndrome research and awareness.