Bipartisan Legislation for Transformative NIH Down Syndrome Research – A Legacy for GLOBAL Ambassador DeOndra Dixon
Denver, May 22, 2025 (GLOBE NEWSWIRE) — Sens. John Hickenlooper (D-CO) and Jerry Moran (R-KS) and Reps. Diana DeGette (D-CO) and Richard Hudson (R-NC) have reintroduced the DeOndra Dixon INCLUDE Project Act (S.1838/H.R. 3491). Also joining as original cosponsors are Sens. Cory Booker (D-NJ) and Markwayne Mullin (R-OK) and Reps. Tom Cole (R-OK), Rosa DeLauro (D-CT), Pete Stauber (R-MN), and Eleanor Holmes Norton (D-DC).
The bill provides statutory authority for the trans-NIH INCLUDE “Investigation of Co-occurring Conditions Across the Lifespan to Understand Down Syndrome” Project. As a result of Global Down Syndrome Foundation’s advocacy, the INCLUDE Project was established in 2018 to investigate the co-occurring conditions that affect individuals with Down syndrome (e.g. Alzheimer’s, autoimmune disorders) and their quality-of-life needs. It has focused on targeted research on chromosome 21, assembling a large study population of individuals with Down syndrome, and conducting clinical trials that include those with Down syndrome.
“Hundreds of thousands of Americans live with Down syndrome, and yet its research has been underfunded for decades,” says Senator Hickenlooper. “This bill is named for my friend DeOndra Dixon, who lived a full, vibrant life and wanted the same for all people living with Down syndrome. We are determined to get this bill across the finish line for her, and for every American who will benefit from research on many different health conditions.”
“Research, supported by the NIH, has helped improve and extend the lives of individuals with Down syndrome, but there is still more to learn,” says Senator Moran. “This legislation will invest in scientific studies on Down syndrome to help members of the Down syndrome community and their families find answers and solutions for the health challenges they face.”
“Down syndrome, the leading cause of developmental delay in the U.S. and worldwide, was the least funded genetic syndrome at the NIH for decades,” says Representative Diana DeGette. “We have made tremendous strides in new federal investments in Down syndrome research to understand why those living with Down syndrome are so at risk for some diseases, such as Alzheimer’s and autoimmune disorders, and protected from other diseases such as solid tumor cancers. Passage of the DeOndra Dixon INCLUDE Project Act will ensure these successful trans-NIH initiatives continue to make significant scientific advances to improve and extend the lives of people with Down syndrome and millions of other Americans as well.”
“People with Down syndrome enrich our world in many unique ways,” says Representative Hudson. “The DeOndra Dixon INCLUDE Act ensures people with Down syndrome are valued, respected members of society and that NIH is supporting their health, enabling them to live their lives to their full potential – with no barriers or bias or obstacles standing in their way. I am honored to continue and grow research efforts so people with Down syndrome have the long and healthy lives they deserve.”
The legislation is named in honor of the life and legacy of DeOndra Dixon, beloved Global Down Syndrome Foundation (GLOBAL) Ambassador and sister of Academy Award-winning and Grammy Award-winning talent Jamie Foxx. DeOndra was an inspiration behind GLOBAL’s highest honor, the Quincy Jones Exceptional Advocacy Award and she traveled the world promoting awareness and advocacy. She was a talented dancer and musician who performed with her brother at the Grammy Awards.
“We are forever grateful to GLOBAL for creating such purpose for our little sister DeOndra,” says Jamie Foxx. “My sister Deidra and I are so proud of the big difference she made through her advocacy in DC, and now with this bill she will continue to make a difference. There isn’t a day that goes by that we don’t miss her, but today I know she’s dancing up in heaven because this legislation is named after her and will help millions of people with Down syndrome.”
“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 and make the project more permanent,” says Michelle Sie Whitten, President and CEO of the Global Down Syndrome Foundation. “We couldn’t have come this far without the leadership of HELP Committee leaders Sens. John Hickenlooper and Markwayne Mullin, House Energy & Commerce leaders Reps. Richard Hudson and Diana DeGette, and our appropriation champions Reps. Tom Cole, Rosa DeLauro and Robert Aderholt. We also owe so much to Dr. Joaquin Espinosa for bringing scientific breakthroughs to the table, to Ambassador DeOndra’s beautiful family, and to our original congressional champions, especially those who have children with Down syndrome such as Reps Cathy McMorris Rodgers, Pete Stauber and Eleanor Holmes Norton.”
GLOBAL had advocated for a trans-National Institutes of Health (NIH) Down syndrome research program since its inception in 2009. In 2017, three GLOBAL leaders , including board member, Frank Stephens, testified at the hallmark House Appropriations Labor, Health and Human Services subcommittee hearing on Down syndrome research. 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 Project.
Since the INCLUDE Project was established in 2018, the program has funded 389 unique awards within 21 of the 27 NIH institutes investing $434M. Thirteen 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 seven years, the INCLUDE Project has funded fourteen 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!”
Formally authorizing the INCLUDE Project 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.
GLOBAL urges advocates to contact Congress to urge them to co-sponsor and support passage of the DeOndra Dixon INCLUDE Project Act: https://www.globaldownsyndrome.org/deondra-dixon-include-project-act/
GLOBAL Affiliate, the Crnic Institute for Down Syndrome, has multiple clinical trials specifically designed for persons with Down syndrome testing new therapies for Alzheimer’s disease in Down syndrome, Down Syndrome Regression Disorder, and autoimmune conditions.
To read about the impactful research that the INCLUDE Project has funded visit the NIH Down Syndrome Coordinating Center Website at: https://includedcc.org/.
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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 2,700 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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CONTACT: Anca E Call Global Down Syndrome Foundation (720) 320-3832 pr@globaldownsyndrome.org
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