# Understanding the DeOndra Dixon INCLUDE Project Act of 2024

This bill creates a major federal research program focused specifically on Down syndrome. The government would establish what's called the INCLUDE Project (which stands for INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE), run through the National Institutes of Health. Essentially, Congress is saying that Down syndrome research deserves dedicated, coordinated attention across all the different federal health agencies, rather than having research scattered in different places without a unified strategy.

The bill funds this program with $250 million per year for six years (2025 through 2030). That money would go toward several types of work: basic science research to understand how the extra chromosome 21 affects how bodies develop, building large groups of people with Down syndrome to study over time, expanding clinical trials to include people with Down syndrome, and researching why people with Down syndrome are more likely to develop certain conditions like Alzheimer's disease and autoimmune disorders. The program would also focus on improving quality of life for people with Down syndrome and their families, and developing new treatments and therapies.

This matters because Down syndrome affects about 1 in every 700 babies born in the United States—roughly 6,000 babies each year. Life expectancy for people with Down syndrome has increased dramatically from about 10 years in 1960 to nearly 60 years today, which means more people are living longer and facing health challenges that weren't as common before. The bill recognizes that people with Down syndrome can work, go to school, vote, and contribute to society, but they often face specific medical complications that need better understanding and treatment. By funding coordinated research, the government hopes to develop better ways to prevent or treat these complications and improve daily life for people with Down syndrome.

DeOndra Dixon INCLUDE Project Act of 2024

McMorris Rodgers, Cathy

DeOndra Dixon INCLUDE Project Act of 2024This bill provides statutory authority for a National Institutes of Health (NIH) research program on Down syndrome. (Down syndrome is a genetic condition in which a person is born with an extra copy of chromosome 21, which can affect mental and physical development.)Specifically, the bill provides statutory authority for the NIH's Investigation of Co-occurring Conditions Across the Lifespan to Understand Down Syndrome Project (known as the INCLUDE Project). The project was initially established in 2018 to investigate the co-occurring conditions that affect those with Down syndrome (e.g., Alzheimer's disease) and their quality-of-life needs, particularly through (1) targeted research on chromosome 21, (2) assembling a large study population of individuals with Down syndrome, and (3) conducting clinical trials that include those with Down syndrome.&nbsp;&nbsp;&nbsp;