House Passes McMorris Rodgers’ Bipartisan Legislation to Preserve Funding for Down Syndrome Research

Washington, D.C. – Last night, the House of Representatives unanimously passed H.R. 7406, the DeOndra Dixon INCLUDE Project Act of 2024. The legislation was led by House Energy and Commerce Committee Cathy Chair McMorris Rodgers (R-WA), Rep. Diana DeGette (D-CO), House Appropriations Committee Chair Tom Cole (R-OK), House Appropriations Committee Ranking Member Rosa DeLauro (D-CT), Rep. Pete Stauber (R-MN), and Rep. Eleanor Holmes Norton (D-DC).

The DeOndra Dixon INCLUDE Project Act of 2024 would authorize the INCLUDE Project at the National Institutes of Health (NIH) and continue funding for Down syndrome research at $90 million annually for the next five years.

“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, I am committed to working with my colleagues on both sides of the aisle to see this bill signed into law.”

The INCLUDE (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE) Project was launched in June 2018 at the direction of Congress to conduct research on critical health and quality-of-life needs for individuals with Down syndrome. The project investigates conditions that affect individuals with Down syndrome and the general population, such as Alzheimer’s disease and dementia, autism, cataracts, celiac disease, congenital heart disease, and diabetes.

CLICK HERE to learn more about the project.

Rep. Rodgers was joined in introducing this legislation by Reps. Tom Cole (R-OK), Diana DeGette (D-CO), Rosa DeLauro (D-CT), Pete Stauber (R-MN), and Eleanor Holmes-Norton (D-DC).

“Medical research has the power to transform lives. This legislation strengthens the innovative environment needed to advance medical breakthroughs and support those with Down syndrome,” said Cole. “By understanding the unique needs of patients and ensuring clinical trials address them, we are making real differences in people’s lives and health. The bill will bring great value to so many, and I am proud to see it pass on the House Floor.”

“The INCLUDE Project Act is a much-needed step to advance research and improve health outcomes for individuals with Down syndrome and related conditions,” said DeGette. “The groundbreaking work being done in my home state at the University of Colorado’s Linda Crnic Institute for Down Syndrome Research exemplifies why this program is so crucial — not only to improve treatments for those with Down syndrome but also to advance our overall understanding of the disease. By passing this bill, we’re reaffirming our commitment to fostering the kind of innovative research that will benefit all individuals, and I look forward to the INCLUDE Project’s continued impact on the medical science field.”

“As an ovarian cancer survivor, I am immensely grateful for biomedical research and believe I am here today because of it,” said DeLauro. “We must do all we can to strengthen the resources available to facilitate medical breakthroughs and help those with Down syndrome live healthier, fuller lives. Since 2018, as the top Democrat on the Labor, Health and Human Services Appropriations Subcommittee, I am proud that on a bipartisan basis we have provided more than $400 million in funding for the more than 200 INCLUDE Project research grant awards at the National Institutes of Health. This legislation builds on this success, and I am proud to work with my colleagues in the House to ensure this critical program continues for years to come.”

“As a father of a son with Down syndrome, I understand the important role research plays in improving the lives of those with disabilities. For too long, the federal government has neglected investment in Down syndrome research, and it’s time we changed that,” said Stauber. “Every life deserves a chance to reach its full potential. That’s why I’m proud to support legislation to preserve funding for groundbreaking research for Down syndrome. The passage of this legislation in the House today demonstrates our commitment to improving health outcomes, fostering inclusion, and celebrating individuals with Down syndrome’s incredible contributions to our world. I am proud to join my colleagues in this fight and excited for the brighter future it will bring.”

“People with Down syndrome, including my own daughter Katherine, have a strong and irrefutable moral case for substantial NIH research funding to benefit their health and quality of life,” said Norton. “Today’s House passage of our bill to preserve this funding at NIH to $90 million annually for the next five years will benefit Katherine, 400,000 other Americans living with Down syndrome, and countless others who suffer from conditions those with Down syndrome are predisposed to. I applaud today’s passage, thank Rep. Rodgers for her leadership on the issue, and look forward to the bill’s progression in the Senate.”

The DeOndra Dixon INCLUDE Project Act of 2024 is supported by the following Down syndrome advocacy groups:

“We are 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. GLOBAL is truly grateful to our congressional champions for their continued commitment to improving health outcomes for our children and adults with Down syndrome. The tangible medical breakthroughs that the NIH INCLUDE Project has already made since 2018 would not have been possible without the great leadership of Chair Rodgers, Chairman Tom Cole, Ranking Member Rosa DeLauro, Congresswoman Diana DeGette, and many others. While there is still much work to be done, the momentum is clearly on our side.” – Michelle Sie Whitten, President & CEO of the Global Down Syndrome Foundation

“We are thrilled to celebrate the passage of the DeOndra Dixon INCLUDE Project Act by the House of Representatives. In the six years since its inception, the INCLUDE Project at NIH has conducted groundbreaking research and innovation to dramatically improve the health and life outcomes of individuals with Down syndrome. Continued investments in the project, such as those found in the DeOndra Dixon INCLUDE Project Act, are vital and necessary to ensure this important work continues. We thank Congresswoman Cathy McMorris Rodgers, Congresswoman Diana DeGette, Congressman Tom Cole, and Congresswoman Eleanor Holmes Norton for their leadership on this issue and we urge the United States Senate to take action to ensure its swift passage.” – Kandi Pickard, President and CEO of the National Down Syndrome Society (NDSS)

“The National Down Syndrome Congress is pleased that the DeOndra Dixon INCLUDE Act has passed. This bill will increase lifespan and improve health outcomes for children and adults with Down syndrome by establishing a Down syndrome program at the National Institutes for Health (NIH). NDSC’s vision is a world with equal rights and opportunities for people with Down syndrome, and good health is critical to achieve this vision and for success in all areas of life.” – Jim Hudson, NDSC Executive Director

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