DeGette, Hudson, DeLauro, Cole, Norton, Stauber Introduce Legislation to Invest in Research for Down Syndrome

WASHINGTON, D.C. — Today, Representatives Diana DeGette (D-CO), Richard Hudson (R-NC), Rosa DeLauro (D-CT), Tom Cole (R-OK), Eleanor Holmes Norton (D-DC), and Pete Stauber (R-MN) introduced the bipartisan DeOndra Dixon INCLUDE Project Act to advance innovative research into Down syndrome and better understand the disease.

"Last Congress, the INCLUDE Project Act passed unanimously out of the House of Representatives because Down syndrome research is a bipartisan priority,” said DeGette. “This bill will advance vital research into Down syndrome and improve health outcomes for those living with Down syndrome and related conditions. Colorado is home to the Linda Crnic Institute for Down Syndrome Research, the largest research facility dedicated to Down syndrome in the world. The INCLUDE Project Act will help us better understand the disease while bolstering our commitment to groundbreaking and innovative research.”

“People with Down syndrome enrich our world in many unique ways," said Rep. Hudson. "The DeOndra Dixon INCLUDE Project Act ensures people with Down syndrome are valued, respected members of society and that NIH is supporting their health, enabling them to live their lives to their full potential – with no barriers or bias or obstacles standing in their way. I am honored to continue and grow research efforts so people with Down syndrome have the long and healthy lives they deserve.

 “Biomedical research is essential – I consider myself alive to because of it,” said DeLauro. “We must do all we can to strengthen the resources that facilitate lifesaving medical breakthroughs and help folks with Down syndrome live long and full lives. Since 2018, as the top Democrat on the Labor, Health and Human Services Appropriations Subcommittee, I am proud that on a bipartisan basis we have provided more than $400 million in funding for the more than 200 INCLUDE Project research grant awards at the National Institutes of Health. Now more than ever, we must fight to protect that funding. I am proud to introduce this bipartisan legislation with my colleagues, to build on that success and show our strong support for this critical program.”

“Innovative medical research has the power to transform lives. The INCLUDE Act will do just that by strengthening the environment needed to advance medical breakthroughs and support individuals with down syndrome. I am proud to help lead this legislation forward, as it will make a real difference for those with down syndrome, and I thank Rep. DeGette for introducing this legislation,” said Congressman Cole.

“Substantial NIH research funding is needed to benefit and enhance health and quality of life for people with Down syndrome, including my own daughter Katherine, and this bill will authorize the necessary funding," said Norton. "Thank you to Rep. DeGette for your leadership on this important issue. I urge my colleagues to support this bill to provide robust funding for Down syndrome research."

“As a father of a son with Down syndrome, I understand the important role research plays in improving the lives of those with disabilities,” said Rep. Stauber. “I’m proud to help lead this effort to ensure continued investment in these life-changing discoveries. Every individual deserves a chance to thrive, and this legislation brings us one step closer to that goal.”

“The reintroduction of the DeOndra Dixon INCLUDE Project Act is a powerful next step in ensuring that the NIH continues to invest in Down syndrome research that will elongate life and improve health outcomes for our children and adults with Down syndrome,” says Michelle Sie Whitten, President and CEO of the Global Down Syndrome Foundation. “GLOBAL, our self-advocates and families, and our researchers and medical professionals are deeply grateful for Reps. Diana DeGette and Richard Hudson’s leadership, and we are so pleased that original cosponsors Reps. Tom Cole, Rosa DeLauro, Pete Stauber, and Eleanor Holmes Norton continue to support this effort. To know that this bill will also provide a legacy in memoriam for our Ambassador DeOndra Dixon means the world to me, Dr. Joaquin Espinosa, and our entire team. I am proud that the awesome people with Down syndrome we serve, brings both sides of the aisle together. We look forward to working with our congressional champions to pass this important legislation into law this year.” 

The House of Representatives passed H.R. 7406, the DeOndra Dixon INCLUDE Project Act of 2024, unanimously in the last Congress.

This week, Rep. DeGette was presented with the Quincy Jones Exceptional Advocacy Award by the Global Down Syndrome Foundation for her continued strong advocacy in Congress that makes an impact on the lives of people with Down syndrome and their families.

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