Michelle Sie Whitten, president and CEO of the non-profit organization Global Down Syndrome Foundation (GLOBAL), fears the impact of two impending financial blows to the foundation. Their annual AcceptAbility Gala on Wednesday, May 21, is seeing a decrease in gala table and ticket sales this year, as well as donations. There is a reported drop in philanthropy in part due to eliminating thousands of positions in the federal government and economic uncertainty.

"We want people to support the gala. We want people to donate, buy tickets, and buy tables, however they can support it. We even need volunteers," Whitten said. 

Whitten said that this situation coincides with the second potentially imminent financial setback. That is, federal cuts to the National Institutes of Health (NIH) funding for Down syndrome research, despite the recent enhancements in funding due to the INCLUDE Project (Investigation of Co-occurring Conditions across the Lifespan to Understand Down Syndrome), according to Whitten. NIH launched its INCLUDE Project in June 2018 to support a Congressional directive in the fiscal year (FY) 2018 Omnibus Appropriations. The directive called for a new NIH research initiative on critical health and quality-of-life needs for individuals with Down syndrome.

David Egan and Frank Stephens are self-advocates for Down syndrome. In separate interviews with The Connection, they discussed their involvement with the GLOBAL, which focuses on research and advocacy. 

Egan highlighted the importance of NIH funding for improving healthcare for individuals like him with Down syndrome, citing his near-death personal experience with COVID-19 and long COVID. Egan noted Virginia's lack of Down syndrome clinics and the need for better healthcare support. He is the author of More Alike Than Different: My Life with Down Syndrome. 

Egan served on Capitol Hill as a Joseph P. Kennedy Jr. Foundation Public Policy Fellow with the House Ways and Means Committee, testified before the Senate HELP Committee, and spoke at the United Nations. Egan is a Special Olympics athlete, received the Quincy Jones Award, and advocates for improved research and care for people with Down syndrome.

Frank Stephens emphasized funding research, public education, and the importance of the Gala, held on May 21.

He shared his emotional connection to the event, honoring his mother, who died in January from Alzheimer's. He also mentioned his participation in the Special Olympics, particularly in golf, basketball, track, and horseback riding. 

Stephens has had notable speaking engagements and media appearances, advocating against the use of the term "retard." He expressed his desire to contribute to society.

"I don't need to be cured or pitied. 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. I want what everyone wants, to make my life a good one. I'm very grateful to my mother."

The 2025 AcceptAbility Gala by GLOBAL recognizes Stephens’ mother, Cornelia "Corny" Stephens, in loving memory on its fundraising page.

The AcceptAbility Gala is at the Marriott Marquis in Washington, D.C. It starts at 6 p.m. with a reception and red carpet, followed by a three-course dinner, a live auction, and performances by local dancers with Down syndrome, and multiplatinum artist and actor, Phillip Phillips.

The gala emcees are Chuck Todd, host of The Chuck ToddCast and former moderator of Meet the Press, and Autria Godfrey, Emmy Award-winning former WJLA ABC News anchor.

Whitten stated that a significant shift in NIH funding took place in 2017. Advocacy efforts by the GLOBAL transformed Down syndrome research at NIH from being the most underfunded genetic condition to a well-supported research priority.

"We worked with Congress, and we were just so honored and relieved. It's kind of like finally finding somebody who listens to you or believes in you," she said. "So, the leading cause of developmental delay in the U.S. and in the world is the least funded genetic condition at the NIH? And it was like, yep," Whitten said. Funding dramatically increased. 

Whitten said that while the average lifespan for a person with Down syndrome has doubled from 30 to 60 years, individuals with it deserve better care through medical research, especially as they age.

Gala tickets start at $700 and can be purchased online at www.globaldownsyndrome.org. GLOBAL leverages the Gala to raise awareness and funding for Down syndrome research. This year, bipartisan congressional members and celebrities stand poised to champion Down syndrome research. Two U.S. representatives, Republican Robert Aderholt ( AL-4) and Democrat Diana DeGette (CO-01), are to receive GLOBAL’s highest honor.