Historic First Win: House Passes DeOndra Dixon INCLUDE Project Act

Groundbreaking Legislation for Transformative NIH Down Syndrome Research is a Legacy for GLOBAL Ambassador DeOndra Dixon, Representatives Rodgers, DeLauro, Cole, DeGette and Other Congressional Champions

DENVER – September 18, 2024—The Global Down Syndrome Foundation (GLOBAL) is proud to announce that the game-changing DeOndra Dixon INCLUDE Project Act (H.R. 7406) passed the U.S. House of Representatives by voice vote.

This bill is named in honor of the life and legacy of DeOndra Dixon, beloved GLOBAL Ambassador and inspiration behind GLOBAL’s highest honor, the Quincy Jones Exceptional Advocacy Award. DeOndra keynoted at conferences around the country and the world, and was a fixture at GLOBAL events along with her big brother Jamie Foxx as well as her loving extended family. She was a talented dancer and musician who performed at the 52nd Grammy Awards.

The DeOndra Dixon INCLUDE Project Act was introduced by House Energy & Commerce Committee Chair, Representative Cathy McMorris Rodgers (R-WA) and is co-sponsored by Representatives Rosa DeLauro (D-CT), Tom Cole (R-OK), Diana DeGette (D-CO), Pete Stauber (R-MN), Eleanor Holmes Norton (D-DC), David Trone (R-MD), and Frank Pallone (D-NJ). GLOBAL urges the Senate to pass their version of the DeOndra Dixon INCLUDE Project Act (S. 3981) and to sign it into law this year.

“GLOBAL is truly overwhelmed by the strong bipartisan support for the DeOndra Dixon INCLUDE Project Act that will formally authorize the INCLUDE Project at the NIH for five years,” says Michelle Sie Whitten, President and CEO of the Global Down Syndrome Foundation. “We couldn’t have come this far without the leadership of Chair Cathy McMorris Rodgers and many other key Congressional champions. We also owe so much to our unwavering self-advocates with Down syndrome and their families! GLOBAL continues to work with our Senate champions, Senators John Hickenlooper, Jerry Moran, and Cory Booker to build bipartisan support so this important legislation becomes law in 2024.”

“This bipartisan legislation will support research into Down syndrome, which has been dramatically underfunded despite affecting one in every 700 babies,” said Rodgers. “Better understanding individuals with this disability–and truly valuing the unique gifts they possess–will help unleash their potential and benefit every American who knows someone battling other diseases like cancer and Alzheimer’s. As the proud mom of a child with Down syndrome, it has been deeply rewarding to partner with Michelle and her team at GLOBAL. Moving forward, I remain committed to working with my colleagues on both sides of the aisle to see this bill signed into law.”

GLOBAL had advocated for a trans-National Institutes of Health (NIH) Down syndrome research program since its inception in 2009. In 2017, three GLOBAL senior leaders, including board member, Frank Stephens, testified at the hallmark House Appropriations Subcommittee on Labor, Health, and Human Services, Education, and Related Agencies Hearing: Down Syndrome: Update on the State of the Science and Potential for Discoveries Across Other Major Diseases. Frank’s testimony went viral that evening with 1 million views and today has over 200 million views. Shortly after the hearing, GLOBAL’s long-time advocacy goal was fulfilled and the NIH established the INCLUDE (Investigation of Co-occurring conditions across the Lifespan to Understand Down syndrome) Project.

Since the INCLUDE Project was established in the FY2018 Labor-HHS appropriations bill, the program has funded 556 unique awards within 18 of the 27 NIH institutes. Eleven of these institutes did not participate in Down syndrome research prior to this program. The INCLUDE Project has also supported the development of the clinical trial infrastructure. Prior to the program, there were only two NIH clinical trials focused on people with Down syndrome. In just six years, the INCLUDE Project is funding thirteen promising clinical trials with possible immediate or short-term impact for people with Down syndrome.

“DSA of Central Oklahoma is a long-time supporter of the Global Down Syndrome Foundation, and their government advocacy work that resulted in the establishment of the trans-NIH Down syndrome research program called the INCLUDE Project,” says Sarah Soell, Executive Director of the Down Syndrome Association of Central Oklahoma. “We know first-hand from our families that the increased research funding is making a difference. We see real progress in the treatment of the many co-occurring conditions that we see in people with Down syndrome, including autoimmune conditions, regression disorder, sleep apnea, Alzheimer’s and more. Given the nearly twenty years of Down syndrome being the least funded genetic condition at the NIH prior to the INCLUDE Project, it is so important to pass this bill at the $250 million cap.”

Formally authorizing the DeOndra Dixon INCLUDE Project Act beyond an annual congressional directive will ensure that people with Down syndrome are not left behind when it comes to participating in clinical trials; it will improve health outcomes and improve their quality of life; and it will send a strong message that our society values and wants to invest in the future of our children and adults with Down syndrome and their families.

Please contact your U.S. Senators and urge them to cosponsor the DeOndra Dixon INCLUDE Project Act (S. 3981).

GLOBAL Affiliate, the Crnic Institute for Down Syndrome, has five clinical trials specifically for patients with Down syndrome: Two in Alzheimer’s and Down Syndrome, one in Down Syndrome Regression Disorder, and two in autoimmunity and inflammation.

To read about the impactful research that the INCLUDE Project has funded visit the NIH Down Syndrome Coordinating Center Website.

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About Global Down Syndrome Foundation

The Global Down Syndrome Foundation (GLOBAL) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. GLOBAL has donated more than $32 million to establish the first Down syndrome research institute supporting over 400 scientists and over 2,500 patients with Down syndrome from 33 states and 10 countries. Working closely with Congress and the National Institutes of Health, GLOBAL is the lead advocacy organization in the U.S. for Down syndrome research and care. GLOBAL has a membership of over 100 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, and the University of Colorado Alzheimer’s and Cognition Center – all on the Anschutz Medical Campus.

GLOBAL’s widely circulated medical publications include Global Medical Care Guidelines for Adults with Down Syndrome, Prenatal & Newborn Down Syndrome Information and the award-winning magazine Down Syndrome WorldTM . GLOBAL also organizes the annual AcceptAbility Gala in Washington DC, and the annual Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world. Visit globaldownsyndrome.org and follow us on social media (Facebook & Twitter: @GDSFoundation, Instagram: @globaldownsyndrome).

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