DeOndra Dixon INCLUDE Project Act

This important legislation provides statutory authority for the trans-NIH INCLUDE “Investigation of Co-occurring Conditions Across the Lifespan to Understand Down Syndrome” Project. As a result of Global Down Syndrome Foundation’s advocacy, the INCLUDE Project was established in 2018 to investigate the co-occurring conditions that affect those with Down syndrome (e.g. Alzheimer’s, autoimmune disorders) and their quality-of-life needs. It has focused on targeted research on chromosome 21, assembling a large study population of individuals with Down syndrome, and conducting clinical trials that include those with Down syndrome. In the past seven years, the NIH INCLUDE Project has generated $418 million in Down syndrome research funding that otherwise would not exist.

The legislation is named in honor of the life and legacy of DeOndra Dixon, beloved Global Down Syndrome Foundation (GLOBAL) Ambassador and sister of Academy Award-winning and Grammy Award-winning talent Jamie Foxx. DeOndra was an inspiration behind GLOBAL’s highest honor, the Quincy Jones Exceptional Advocacy Award and she traveled the world promoting awareness and advocacy.

Our heartfelt gratitude to Sens. John Hickenlooper (D-CO) and Jerry Moran (D-KS), and Reps. Diana DeGette (D-CO) and Richard Hudson (R-NC) for reintroducing the DeOndra Dixon INCLUDE Project Act (S.1838/H.R. 3491). Joining as original cosponsors are Sens. Cory Booker (D-NJ) and Markwayne Mullin (R-OK) and Reps. Tom Cole (R-OK), Rosa DeLauro (D-CT), Pete Stauber (R-MN), and Eleanor Holmes Norton (D-DC).

A huge THANK YOU to the thousands of people who wrote their Members of Congress and the 338 people who joined GLOBAL’s Spokesperson, Academy and Grammy award-winner, Jamie Foxx, in DC to advocate for the passing of this important bill in December of 2024. Your hard work has set us up for success this year and we’re counting on you to help us get 40 Co-Sponsors! Your letters and meetings with your Members of Congress have a profound impact.

Legislation Overview:

For nearly two decades, Down syndrome was one of the least funded genetic conditions at our National Institutes of Health (NIH). The Global Down Syndrome Foundation (GLOBAL) has worked hard and successfully advocated with Congress and the NIH to increase Down syndrome research and medical care funding from $18 million in 2009 to $133 million in 2024.

The DeOndra Dixon INCLUDE Project Act, named in memory of GLOBAL’s beloved Ambassador and Jamie Foxx’s younger sister, DeOndra Dixon, will authorize Down syndrome research funding that continue to elongate life and improve health outcomes for people with Down syndrome.