Washington, DC, May 29, 2026 (GLOBE NEWSWIRE) — Following a powerful and deeply moving bipartisan markup, the U.S. House Energy & Commerce Committee unanimously advanced the DeOndra Dixon NIH INCLUDE Project Act (H.R. 3491) by a vote of 46-0, sending the landmark legislation to the full House of Representatives.
The legislation, led by Representatives Diana DeGette (D-CO) and Richard Hudson (R-NC), would codify and strengthen the National Institutes of Health (NIH) INCLUDE Project (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE), the most successful Down syndrome research initiative in U.S. history.
For the Global Down Syndrome Foundation (GLOBAL), the markup represents much more than a legislative milestone. Throughout the hearing, Members of Congress from both parties celebrated the extraordinary progress already achieved through the NIH INCLUDE Project, recognized the tireless advocacy of GLOBAL and its President & CEO Michelle Sie Whitten, and paid heartfelt tribute to GLOBAL founder John J. Sie.
During the markup, Representative Diana DeGette recognized Whitten’s leadership and expressed her optimism about the bill, “Even in this fraught political environment, this is an issue that transcends party lines… The INCLUDE Project Act passed the House unanimously last Congress, and this must be the year it’s finally passed into law.”
Representative Paul Tonko (D-NY) echoed those sentiments, stating that the progress being achieved “doesn’t happen without sustained advocacy” and specifically recognizing the “tireless advocacy” of the Global Down Syndrome Foundation. He went on to reflect on the science that GLOBAL and its affiliate, the Linda Crnic Institute for Down Syndrome, has been leading, “Every one of these breakthroughs carries the hope for a brighter tomorrow for individuals living with Down syndrome.”
Representative Richard Hudson (R-NC), who co-leads the legislation with Representative DeGette, thanked Michelle Sie Whitten and GLOBAL “for the tremendous work” they have done to raise awareness, advocate for research, and support caregivers, adding, “They do an amazing job.” His message to people with Down syndrome was heartfelt, “We support you. We love you. We value you. And we are committed to funding the research that will ensure you have a long and healthy life.”
One of the most touching moments of the markup came when House Energy & Commerce Committee Chairman Brett Guthrie (R-KY) recognized the contributions of GLOBAL founder John J. Sie. Referring to Mr. Sie’s role in founding C-SPAN, Chairman Guthrie remarked, “Everybody gets to watch our committee proceedings because your father founded C-SPAN.”
Chairman Guthrie then noted that Mr. Sie, who recently celebrated his 90th birthday, was watching the markup live and waiting to see the legislation advance.
“Your father, who is now 90 years old, is watching C-SPAN now so he can watch us pass the bill,” said Chairman Guthrie. “Thanks for making Congress public to the country, and I’m glad he’s using this time to watch this moment.”
Chairman Guthrie also recognized the deeply personal significance of the legislation for the Sie family, noting that the bill honors John’s granddaughter and Michelle’s daughter, Sophia, whose happens to have Down syndrome and was the inspiration behind the establishment of GLOBAL, the Crnic institute and the Alzheimer’s & Cognition Center on the Anschutz Medical Campus, the Sie Center for Down Syndrome at Children’s Hospital Colorado, and the GLOBAL Adult Down Syndrome Clinic at Denver Health.
Mr. Sie’s lifelong commitment to public service, transparency, hard work, and opportunity has inspired generations of leaders and advocates. His vision helped transform how Americans engage with their government, and his family’s commitment to improving the lives of people with Down syndrome has helped transform the future of medical research and care.
The markup also highlighted the remarkable impact of the NIH INCLUDE Project. Since its launch, INCLUDE-supported research has accelerated discoveries related to Alzheimer’s disease, autoimmune conditions, sleep apnea, cancer, heart disease, liver dysfunction, and other co-occurring conditions that disproportionately affect individuals with Down syndrome.
Representative DeGette highlighted the dramatic progress already achieved through Down syndrome research, noting that life expectancy for individuals with Down syndrome has increased by approximately ten years during the period of expanded federal investment.
“What we’ve done is put science and inclusion in front of politics,” said Representative DeGette. “And it benefits everybody living with Down syndrome and their families.”
Representative Tonko emphasized that every breakthrough emerging from INCLUDE research “carries the hope for a brighter tomorrow for individuals living with Down syndrome.”
The legislation is named in honor of the life and legacy of GLOBAL Ambassador DeOndra Dixon, beloved sister of Academy Award-winning actor Jamie Foxx, whose joyful advocacy inspired people around the world and helped elevate awareness, inclusion, and opportunity for people with Down syndrome. A dancer, artist, advocate, and trailblazer, DeOndra dedicated her life to ensuring that people with Down syndrome were seen, valued, respected, and celebrated. Today, her legacy lives on through landmark legislation that will expand groundbreaking research, improve health outcomes, and create a brighter future for generations of people with Down syndrome and their families.
Michelle Sie Whitten, President & CEO of the Global Down Syndrome Foundation, said:
“We were profoundly humbled by the beautiful remarks shared during this markup and deeply grateful for the extraordinary bipartisan support shown by Chairman Guthrie, Representatives DeGette, Hudson, Tonko, and every member of the House Energy & Commerce Committee.
“To hear congressional leaders recognize my amazing immigrant father, my inspirational daughter, the work of our GLOBAL team and our affiliates, and the legacy of our beloved friend and Ambassador DeOndra Dixon was incredibly meaningful.
“The NIH INCLUDE Project has already transformed Down syndrome research and changed lives. The DeOndra Dixon INCLUDE Project Act will ensure that this progress continues for generations to come. Most importantly, this legislation sends a powerful message that people with Down syndrome matter, their health matters, and their futures matter.”
GLOBAL also expressed gratitude to Representatives Diana DeGette, Richard Hudson, Brett Guthrie, Paul Tonko, Tom Cole, Rosa DeLauro, Eleanor Holmes Norton, Pete Stauber, Cathy McMorris Rodgers, and the many bipartisan congressional champions who have supported the Down syndrome community and the NIH INCLUDE Project over the years.
According to Senate sponsors Senators John Hickenlooper (D-CO) and Jerry Moran (R-KS), movement on the legislation on the other side of the Capitol is not far behind, creating renewed optimism that the DeOndra Dixon INCLUDE Project Act will soon be signed into law.
The unanimous 46-0 committee vote marks one of the strongest bipartisan endorsements received by any health-related legislation this Congress and reflects a growing national commitment to improving health outcomes and quality of life for people with Down syndrome and their families.
To learn more about GLOBAL, visit www.globaldownsyndrome.org.
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About the Global Down Syndrome Foundation
The Global Down Syndrome Foundation (GLOBAL) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. GLOBAL established the first Down syndrome research institute and supports over 400 scientists and over 2,700 patients with Down syndrome from 40 states and 11 countries. Working closely with Congress and the National Institutes of Health, GLOBAL is the lead advocacy organization in the U.S. for Down syndrome research and care. GLOBAL has a membership of over 130 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, the University of Colorado Alzheimer’s and Cognition Center – all on the Anschutz Medical Campus, and the GLOBAL Adult Down Syndrome Clinic at Denver Health.
GLOBAL’s widely circulated medical publications include Global Medical Care Guidelines for Adults with Down Syndrome, Prenatal & Newborn Down Syndrome Information, and the award-winning magazine Down Syndrome World TM. GLOBAL also organizes the annual AcceptAbility Gala in Washington DC, and the annual Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world. Visit globaldownsyndrome.org and follow us on social media: Facebook, X, Instagram, LinkedIn, and YouTube.
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Alex Lee Global Down Syndrome Foundation 720-548-5631 alee@globaldownsyndrome.org
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