McMorris Rodgers, Cole unveil bill to support Down syndrome research, funding

A bipartisan bill proposed on Feb. 7 by U.S. Reps. Cathy McMorris Rodgers (R-WA) and Tom Cole (R-OK) would authorize a federal program of research, training, and investigation related to Down syndrome.

“For decades, Down syndrome research has been dramatically underfunded despite one in every 700 babies in the United States being born with it,” Rep. McMorris Rodgers said. “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.”

The congresswoman sponsored the INCLUDE Down Syndrome Research Initiative Authorization Act of 2024, H.R. 7268, with three original cosponsors, including Rep. Cole and U.S. Rep. Diana DeGette (D-CO).

“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 Rep. 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.”

If enacted, H.R. 7268 would reauthorize the Investigation of Co-occurring Conditions Across the Lifespan to Understand Down Syndrome Project at the National Institutes of Health that launched in June 2018 at the direction of Congress to conduct research on health and quality-of-life needs for individuals with Down syndrome.

Additionally, the bill would increase funding for Down syndrome research to $250 million annually for the next five years, according to a bill summary provided by the lawmakers.

“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,” said Rep. McMorris Rodgers. “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.”

Rep. DeGette said that 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,” she said. “I look forward to working with my colleagues to bring this bill to the floor soon.”

The measure is supported by several Down syndrome advocacy groups, including the National Down Syndrome Society and the National Down Syndrome Congress.