SE Kansas News

U.S. Senator Jerry Moran from Kansas, co-chair of the Congressional Task Force on Down Syndrome, has collaborated with Senators John Hickenlooper, Markwayne Mullin, and Cory Booker to introduce the DeOndra Dixon INCLUDE Project Act. This bipartisan legislation aims to increase funding for Down syndrome research through the National Institutes of Health (NIH) over the next five years.

The proposed legislation is named after DeOndra Dixon, an advocate for people with Down syndrome and former Ambassador for the Global Down Syndrome Foundation. She passed away at 36 in 2020. The bill seeks to continue and expand upon efforts by the NIH's INCLUDE Project, which was initiated in June 2018 to investigate various health conditions affecting those with Down syndrome.

Senator Moran emphasized the need for further research: "Research, supported by the NIH, has helped improve and extend the lives of individuals with Down syndrome, but there is still more to learn." He noted that this investment would aid families in finding solutions for related health challenges.

Senator Hickenlooper remarked on the historical underfunding of research: "Hundreds of thousands of Americans live with Down syndrome, and yet its research has been underfunded for decades." He stressed determination in advancing this bill for Dixon and others who stand to benefit.

Mullin highlighted a shared commitment: "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."

Booker pointed out annual statistics: "Every year, around 6,000 babies are born in the United States with Down syndrome," adding that while life expectancy has increased, many remain at risk for certain medical conditions.

The legislation has garnered support from self-advocates and researchers. The Global Down Syndrome Foundation expressed gratitude toward senators championing this cause: "Our hearts are full knowing this legislation will be an enduring legacy celebrating the life and advocacy of our beloved Ambassador DeOndra Dixon."

The House version is led by Representative Diana DeGette and cosponsored by several other representatives.