NE Washington News

The House of Representatives has unanimously passed H.R. 7406, the DeOndra Dixon INCLUDE Project Act of 2024. The legislation, which was spearheaded by several key members of Congress, aims to authorize the INCLUDE Project at the National Institutes of Health (NIH) and ensure continued funding for Down syndrome research at $90 million annually over the next five years.

“This bipartisan legislation will support research into Down syndrome, which has been dramatically underfunded despite affecting one in every 700 babies," said Rep. Rodgers. "Better understanding individuals with this disability–and truly valuing the unique gifts they possess–will help unleash their potential and benefit every American who knows someone battling other diseases, like cancer and Alzheimer's. As the proud mom of a child with Down syndrome, I am committed to working with my colleagues on both sides of the aisle to see this bill signed into law.”

Rep. Diana DeGette highlighted the importance of advancing research through initiatives such as those conducted at the University of Colorado’s Linda Crnic Institute for Down Syndrome Research: "The groundbreaking work being done in my home state... exemplifies why this program is so crucial — not only to improve treatments for those with Down syndrome but also to advance our overall understanding of the disease."

Rep. Tom Cole emphasized how medical research can transform lives: “By understanding the unique needs of patients and ensuring clinical trials address them, we are making real differences in people’s lives and health.”

Rep. Rosa DeLauro shared her personal connection to biomedical research as an ovarian cancer survivor: “We must do all we can to strengthen the resources available to facilitate medical breakthroughs and help those with Down syndrome live healthier, fuller lives.”

“As a father of a son with Down syndrome,” said Rep. Pete Stauber, “I understand the important role research plays in improving the lives of those with disabilities.” He noted that federal investment in Down syndrome research has been neglected for too long.

Rep. Eleanor Holmes Norton also expressed her support: "People with Down syndrome, including my own daughter Katherine, have a strong and irrefutable moral case for substantial NIH research funding to benefit their health and quality of life."

The INCLUDE (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE) Project was initiated by Congress in June 2018 to focus on critical health issues affecting individuals with Down syndrome as well as broader populations.

Advocacy groups have voiced strong support for this legislative move:

“We are overwhelmed by the strong bipartisan support... GLOBAL is truly grateful,” stated Michelle Sie Whitten from Global Down Syndrome Foundation.

Kandi Pickard from National Down Syndrome Society remarked on past successes: “In six years since its inception... Continued investments are vital and necessary.”

Jim Hudson from National Down Syndrome Congress commented on health outcomes: “This bill will increase lifespan and improve health outcomes for children and adults with Down syndrome by establishing a Down syndrome program at NIH.”