WASHINGTON – Today, U.S. Senators John Hickenlooper, Jerry Moran, Cory Booker, and Markwayne Mullin introduced the bipartisan, bicameral DeOndra Dixon INCLUDE Project Act to boost funding for Down syndrome research. Specifically, the legislation would authorize the INCLUDE (Investigation of Co-Occurring Conditions Across the Lifespan to Understand Down syndrome) Project at the National Institutes of Health (NIH) and increase funding for Down syndrome research for the next five years.
“Hundreds of thousands of Americans live with Down syndrome, and yet its research has been underfunded for decades,” said 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,” said 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.”
“Every year, around 6,000 babies are born in the United States with Down syndrome, and while the life expectancy for people with Down syndrome has increased drastically over the years, many are still at an increased risk for certain medical conditions,” said Booker. “This bipartisan legislation would reauthorize critical funding for research, increase the number of clinical trials for individuals with Down syndrome, and ultimately help improve the quality of life for people with Down syndrome and their families.”
“People with Down syndrome are a gift from God, and I’m glad to be working in a bipartisan way to support federal Down syndrome research,”said Mullin. “We know that people with Down syndrome are at an increased risk of developing certain medical conditions, like heart defects and Alzheimer’s disease, so it’s critical we do everything we can to better health care outcomes and improve quality of life.”
The INCLUDE Project was launched in June 2018 to further 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.
The House version of the bill is led by representative Diana DeGette and cosponsored by representatives Richard Hudson, Rosa DeLauro, Tom Cole, Pete Stauber, and Eleanor Holmes Norton.
“GLOBAL, our self-advocates and families, and our researchers and medical professionals, celebrate Senate reintroduction of the DeOndra Dixon INCLUDE Project Act which is a necessary next step to ensuring continued and growing federal investments at the NIH to advance Down syndrome research that will elongate life and improve health outcomes for our children and adults with Down syndrome” said Michelle Sie Whitten, President and CEO of the Global Down Syndrome Foundation. “I am deeply grateful for the efforts of our dear friends and champions Senators Hickenlooper and Moran along with Senators Booker and Mullin who have reintroduced this important legislation today. Our hearts are full knowing this legislation will be an enduring legacy celebrating the life and advocacy of our beloved Ambassador DeOndra Dixon.”
Full text of the legislation available HERE.
###