McMorris Rodgers Introduces Bipartisan Legislation to Boost Funding for Down Syndrome Research at NIH

Feb 08, 2024
Health Care
Press

Washington, D.C. – Eastern Washington Congresswoman Cathy McMorris Rodgers (R-WA) today joined Representatives Diana DeGette (D-CO), Tom Cole (R-OK), and Eleanor Holmes Norton (D-DC) in introducing the bipartisan DeOndra Dixon INCLUDE Project Act of 2024 (H.R. 7406). This legislation would reauthorize the INCLUDE Project at the National Institutes of Health (NIH) and increase funding for Down syndrome research to $250 million annually for the next five years.

“For decades, Down syndrome research has been dramatically underfunded despite one in every 700 babies in the United States being born with it. As the proud mom of one of those children, I am committed to changing and empowering this community to live more full and independent lives,” said Rodgers. “This bipartisan legislation will help us take Down syndrome research to new heights and usher in a new era where we not only understand – but truly value and appreciate – every individual living with Down syndrome. This is the key to tapping into their potential just waiting to be unleashed, and I’m excited about the endless possibilities that will follow.”

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.

“For almost six years, the INCLUDE project has done critical work to advance research into Down syndrome and conditions that affect individuals with Down syndrome,” said DeGette. “From Alzheimer’s disease and dementia to congenital heart disease and diabetes, individuals with Down syndrome must be included in clinical trials to study and address the diseases and conditions that disproportionately impact them. We have an existing program that we know works and Congress can strengthen it for years to come by enshrining it into federal law. I look forward to working with my colleagues to bring this bill to the floor soon.”

“Novel research has the power to transform lives. This bipartisan 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 help lead it forward.”

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

“We are so grateful to Chairwoman McMorris Rodgers for introducing the DeOndra Dixon INCLUDE Project Act of 2024. This legislation to formally establish the INCLUDE Project as a long-term trans-NIH program is the culmination of years of tireless advocacy to increase NIH funding for much needed Down syndrome medical research; and GLOBAL is honored to have the bill named in memory of our beloved Ambassador, DeOndra Dixon. Down syndrome has been one of the least funded genetic conditions at NIH for nearly two decades. In 2018, GLOBAL advocates and our bipartisan champions, including Representatives Tom Cole and Rosa DeLauro, helped secure significant new federal research investments that are helping scientists better understand why for example people with Down syndrome are more likely to develop Alzheimer’s disease yet less likely to develop solid tumor cancers. Today, with Chairwoman McMorris Rodger’s leadership, and with the incredible support Congresswoman Diana DeGette, Congressman Tom Cole, and Delegate Eleanor Holmes Norton, our dedicated scientists can continue their research aimed at elongating life and improving health outcomes for people with Down syndrome, which in turn can help to improve health outcomes and quality of life for all people.” – Michelle Sie Whitten, GLOBAL President & CEO

“The INCLUDE Project is critical to better understanding the health and quality of life needs of the Down syndrome community. NDSS urges Congress to ensure the program receives the funding it needs to continue supporting our community in such an important way.” – Kandi Pickard, President and CEO of the National Down Syndrome Society (NDSS)

“The National Down Syndrome Congress would like to thank Chairwoman McMorris Rodgers, Rep. Holmes Norton, Rep. Cole and Rep. DeGette for introducing the DeOndra Dixon INCLUDE Project Act of 2024. This bill would significantly increase Down syndrome research funding at NIH to address conditions that commonly co-occur with Down syndrome such as Alzheimer’s disease, congenital heart disease, and diabetes. People with Down syndrome should have every opportunity to live long, fulfilling lives, and good health is critical to success in all areas of life.” – Stephanie Smith Lee, Interim Executive Director of National Down Syndrome Congress

CLICK HERE to read the bill.

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