PASSED: Sen. Moran’s Legislation to Authorize NIH Program for Down Syndrome Research

WASHINGTON - U.S. Senator Jerry Moran (R-Kan.) - co-chair of the Congressional Task Force on Down Syndrome - applauded the unanimous passage of his bipartisan DeOndra Dixon INCLUDE Project Act by the Senate this week. The legislation now goes to the U.S. House of Representatives for consideration.

Sen. Moran introduced the legislation with Sens. John Hickenlooper (D-Colo.), Cory Booker (D-N.J.) and former Sen. Markwayne Mullin (R-Okla.) last May to authorize the INCLUDE (Investigation of Co-Occurring Conditions Across the Lifespan to Understand Down Syndrome) Project at the National Institutes of Health (NIH) and support continued federal investments in Down syndrome research.

"This legislation will strengthen the critical research that helps improve the lives of individuals with Down syndrome and supports their families," said Sen. Moran. "Research funded by the NIH has already led to meaningful advancements, but more work remains. By authorizing continued federal investments in scientific research focused on Down syndrome, this legislation will help scientists better understand the health challenges these individuals face and advance new solutions to improve care and outcomes. I'm pleased this legislation was passed unanimously in the Senate, and I urge the House to pass it and send it to the President's desk to be signed into law."

"Senator Moran has been one of GLOBAL's most steadfast champions in Congress for well over a decade, earning GLOBAL's highest honor, the Quincy Jones Exceptional Advocacy Award, for his extraordinary commitment to Down syndrome research and medical care. From organizing congressional briefings with GLOBAL, our scientists and the National Institutes of Health, to leading bipartisan legislation and serving as Co-Chair of the Congressional Task Force on Down Syndrome, he has consistently affirmed that people with Down syndrome have equal value, extraordinary potential and a rightful place at the table," said Michelle Sie Whitten, President and CEO of the Global Down Syndrome Foundation. "Today, his leadership has delivered a truly historic victory. The DeOndra Dixon INCLUDE Project Act will honor the memory and extraordinary advocacy of our beloved GLOBAL Ambassador DeOndra Dixon by permanently authorizing the INCLUDE Project, the first NIH-wide Down syndrome research program. We are profoundly grateful to Senator Moran for his friendship, conviction and years of tenacious leadership helping people with Down syndrome live longer, healthier lives."

Items to note:

• The INCLUDE Project was launched in June 2018 to advance research on 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.

• The legislation is named after DeOndra Dixon, the Global Down Syndrome Foundation's Ambassador and Quincy Jones Exceptional Advocacy Awardee, who died at the age of 36 in 2020.

Full text of the legislation can be found here.

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