House Passes DeGette’s Bill Boosting Down Syndrome Research

WASHINGTON, D.C. — Today, the U.S. House of Representatives passed H.R. 3491, the DeOndra Dixon INCLUDE Project Act, which would advance innovative research into Down syndrome. Representative Diana DeGette (CO-01), who led the bill, along with Representatives Richard Hudson (NC-09), Rosa DeLauro (CT-03), Tom Cole (OK-04), and Pete Stauber (MN-08) released the following statement:

"Today’s passage of the INCLUDE Project Act shows what we can achieve when we make Down syndrome research a true bipartisan priority," said DeGette. "By advancing this critical legislation, we are showing our commitment to improving health outcomes for individuals with Down syndrome. Colorado is already leading the way as home to the Global Down Syndrome Foundation and their affiliate, the Linda Crnic Institute—the largest institute for Down syndrome research in the world. When this bill becomes law, we will be doubling down on our commitment to groundbreaking science and to the Down syndrome community."

“People with Down syndrome enrich our families and communities in so many ways,” said Hudson. “I’m proud the House passed my bill to support research that can help them live longer, healthier lives and reach their full potential without barriers standing in their way.”

“Biomedical research is essential,” said DeLauro. “We must do all we can to strengthen the resources that lead to lifesaving medical breakthroughs and help folks with Down syndrome live long, fulfilling lives. Since 2018, as the Ranking Member of the Labor, Health and Human Services Appropriations Subcommittee, I am proud to have worked on a bipartisan basis to provide more than $400 million in funding for the more than 200 INCLUDE Project research grant awards at the National Institutes of Health. We must fight to protect that funding, and this legislation is a needed step to ensure there are no barriers to this important research.”

“Advanced medical research has the potential to change lives – and the DeOndra Dixon INCLUDE Project Act will do just that. Specifically, this legislation will strengthen the collaboration among institutes at the NIH, advance medical breakthroughs, and support Americans with down syndrome,” said Cole. “I’d like to thank Representative DeGette for taking the lead on this legislation, as we must do all we can to improve the lives of those with down syndrome.”

“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 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.”

“I have known Diana for 30 years, and throughout that time I have witnessed her extraordinary tenacity, bipartisan leadership, and ability to turn ambitious ideas into consequential legislation, and today’s unanimous House passage of the DeOndra Dixon INCLUDE Project Act adds to her legacy,” said Michelle Sie Whitten, CEO & Co-founder of the Global Down Syndrome Foundation.  “GLOBAL’s advocacy, along with our allies in Congress, helped catalyze the NIH INCLUDE Project into existence as the first NIH-wide Down syndrome research program, and it is already transforming the field—driving important breakthroughs in inflammation and immune system dysregulation, Alzheimer’s disease, sleep apnea, hearing loss, cancer, and more. We are enormously grateful to Diana and her Republican lead partner, Congressman Richard Hudson, for bringing both sides of the aisle together and moving the bill one step closer to becoming law.  Diana’s leadership sends a powerful message: people with Down syndrome matter, their health matters, and their futures are worth fighting for.”

“NDSC strongly supports the INCLUDE Act and applauds the bipartisan leadership behind this important legislation,” said Jim Hudson, National Down Syndrome Congress (NDSC) Executive Director. “Continued investment in Down syndrome research is essential to improving health outcomes, expanding our understanding of co-occurring conditions, and enhancing quality of life for people with Down syndrome across the lifespan.”

The DeOndra Dixon INCLUDE Project Act formally authorizes the INCLUDE (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE) Project, which was launched in June 2018 at the direction of Congress to conduct 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 bill would expand clinical trials, investigate biomedical mechanisms of trisomy 21, and address the high prevalence of co-occurring conditions like Alzheimer’s and autoimmune diseases in this population.

###