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Hickenlooper, Moran Introduce Bipartisan Legislation to Boost Funding for Down Syndrome Research

Mar 21, 2024

WASHINGTON – Recently, U.S. Senators John Hickenlooper and Jerry Moran introduced the bipartisan, bicameral DeOndra Dixon INCLUDE Project Act to increase funding for Down syndrome research. The legislation would reauthorize 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.

“Down syndrome affects millions of Americans and yet its research has been underfunded for decades,” said Senator Hickenlooper. “This bipartisan legislation will help advance critical research and improve the lives of people with Down syndrome.” 

“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 Senator 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.”

The INCLUDE Project was launched in June 2018 to further 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.

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.

“On behalf of the Global Down Syndrome Foundation and our self-advocates across the country, we are so grateful to Senators Hickenlooper and Moran for introducing the DeOndra Dixon INCLUDE Project Act of 2024 in the United State Senate today. This legislation will authorize the INCLUDE Project for five years and accelerate science being advanced by this groundbreaking trans-NIH initiative,” says Michelle Sie Whitten, GLOBAL President & CEO. “The bill is named in memory of our beloved Ambassador, DeOndra Dixon, who was among the many self-advocates who have been tireless advocates for the past decade for more federal funding for Down syndrome research at the NIH. Prior to GLOBAL and DeOndra’s advocacy, Down syndrome had been one of the least funded genetic conditions at NIH for nearly two decades. This legislation will ensure significant new federal research investments to help 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. We are forever grateful to Senators Hickenlooper and Moran and our House champions for empowering our dedicated scientists to 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.”

“We are forever grateful to GLOBAL for creating such purpose for our little sister DeOndra,” says Academy Award-winning actor and DeOndra Dixon’s brother, Jamie Foxx. “My sister Deidra and I are so proud of the big difference she made through her advocacy in DC, and now with this bill she will continue to make a difference. There isn’t a day that goes by that we don’t miss her, but today I know she’s dancing up in heaven because this legislation is named after her and will help millions of people with Down syndrome.”

“DeOndra loved to help people and to advocate for people less fortunate,” says Mr. George Dixon, DeOndra’s father. “I remember DeOndra walking the halls of Congress, and cracking everybody up with her jokes. Anyone who has met DeOndra knows she was a pistol – articulate, funny, smart and the most loving person I have ever known. We are so happy that this important bill is named after our little angel. People with Down syndrome deserve better, and this bill is a big step in the right direction.”

Recently, companion legislation in the House of Representatives, introduced by Representatives Cathy McMorris Rodgers, Diana DeGette, Tom Cole, and Eleanor Holmes Norton, advanced out of the House Energy and Commerce Committee.  

Full text of the legislation available HERE.


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