DENVER, Feb. 24, 2026 (GLOBE NEWSWIRE) — The Global Down Syndrome Foundation (GLOBAL) concluded a highly successful three-day fly-in to Washington, D.C. earlier this month, bringing together 120 dedicated supporters from 22 states and Washington, DC to advocate for congressional passage of the DeOndra Dixon INCLUDE Project Act (H.R. 3491; S.1838).
Throughout the fly-in, GLOBAL advocates met with 87 Members of Congress and their congressional staff. Meetings included key members of the House Appropriations and Energy & Commerce Committees and Senate Appropriations and HELP Committees to directly address the impact of the National Institutes of Health (NIH) Down syndrome research program called the INCLUDE Project.
“People with Down syndrome bring both sides of the aisle together and that is a beautiful thing,” says GLOBAL President and CEO Michelle Sie Whitten. “Our GLOBAL advocates did an amazing job meeting with Members and staff and explaining the importance of the continuation and increased funding for the NIH INCLUDE Project. We could not have come this far without the leadership and dedication of our Congressional and NIH Champions, dedicated scientists and clinicians, and our brilliant self-advocates and family members.”
Key Highlights of the 2026 GLOBAL DC Fly-In:
- Training: GLOBAL held a training dinner to review the impact of the DeOndra Dixon INCLUDE Project Act and update advocates on how NIH Down syndrome research is already improving the health of individuals with Down syndrome across the country.
The bill is named in honor of the life and legacy of DeOndra Dixon, beloved GLOBAL Ambassador and inspiration behind GLOBAL’s highest honor, the Quincy Jones Exceptional Advocacy Award. DeOndra keynoted at conferences around the country and the world and was a fixture at GLOBAL events along with her big brother Jamie Foxx as well as her loving extended family. She was a talented dancer and musician who performed at the 52nd Grammy Awards.
- Congressional Briefing: GLOBAL organized a Congressional Briefing attracting over 150 attendees featuring keynote speakers Senator John Hickenlooper (D-CO), Director of the NIH Dr. Jay Bhattacharya, GLOBAL International Spokesperson and Grey’s Anatomy Actor Caterina Scorsone, GLOBAL International Spokesperson and Board Member Frank Stephens, Executive Director of the Crnic Institute for Down Syndrome Dr. Joaquin Espinosa, and President & CEO of GLOBAL Michelle Sie Whitten.
- Advocacy & Bipartisan Support: GLOBAL Advocates met with 87 Member Offices including 18 Member level meetings. To date, there are 24 cosponsors of the DeOndra Dixon INCLUDE Project Act.
“What Michelle, her family and the GLOBAL team have done is truly remarkable. They have literally put Down syndrome research on the map, working with self-advocates and Congress to create a Down syndrome research program at NIH that is already improving health outcomes. With leadership from Senators Jerry Moran, Cory Booker and Markwayne Mullin, we need to codify this work through the DeOndra Dixon INCLUDE Project Act. Every time I hear the words DeOndra Dixon, it puts a smile on my face because she was a joyful warrior,” says Senator John Hickenlooper. “The bill that we are working on, the fact that it has her name, gives it a superpower.”
“At the NIH, we have a long-standing commitment for advancing research on Down syndrome,” says Director of the National Institutes of Health and Acting Director of the Centers for Disease Control and Prevention Dr. Jay Bhattacharya during his speech at the Global Down Syndrome Foundation Congressional Briefing. “Between the fiscal year 2011 and fiscal year 2025, the NIH increased investment in Down syndrome research by 500%. This growth reflects scientific opportunity as well as energy, partnership and persistence of GLOBAL and the Down syndrome community. I look forward to a day people with Down syndrome can live longer and healthier lives.”
“As the proud mom of Pippa, who happens to have Down syndrome, it has been deeply rewarding to partner with Michelle and her wonderful team at GLOBAL,” says GLOBAL International Spokesperson and award-winning Grey’s Anatomy actor Caterina Scorsone. “It is exciting to be part of GLOBAL’s advocacy in DC that will no doubt see the DeOndra Dixon INCLUDE Project Act pass so that people with Down syndrome can live longer, healthier lives. The energy and excitement at our Congressional Briefing and the connectivity made at our meetings was truly inspirational.”
GLOBAL Spokesperson and Quincy Jones Advocacy Awardee, Author, Actor and Public Speaker Frank Stephens provide an important self-advocate perspective at the GLOBAL Congressional Briefing, “Not everyone offers love and acceptance to people with an extra chromosome. Millions of people view our extra chromosome as a mistake to be fixed or eliminated. I know I am lucky to be at the helm of this GLOBAL movement, and to live in the US during this moment in history where I am valued and where I get to tell our government that my life is worth living.”
“Formally authorizing the DeOndra Dixon INCLUDE Project Act beyond an annual congressional directive will ensure that people with Down syndrome are not left behind when it comes to participating in clinical trials; it will improve health outcomes and improve their quality of life; and it will send a strong message that our society values and wants to invest in the future of our children and adults with Down syndrome and their families,” says Executive Director of the Crnic Institute for Down Syndrome Dr. Joaquín Espinosa. “What GLOBAL has done here in DC in transformative, lifesaving and has moved Down syndrome from the least funded genetic condition at the NIH to a period of research renaissance.”
The seventeen local Down syndrome organizations who supported the GLOBAL DC Fly-In were pleased with the results and optimistic that the passage of this landmark bill will happen during the 119th Congress.
“We were so pleased that our Representative Ann Wagner signed up to cosponsor the DeOndra Dixon INCLUDE Project Act on the spot!” says Executive Director of the Gateway Down Syndrome Association Erin Suelmann. “My brother Andrew played a key role in our meetings, and we are hopeful that Senators Josh Hawley and Eric Schmitt will also come on board. We are energized by the momentum GLOBAL has built and look forward to seeing this important legislation pass this year.”
“DSA of Central Oklahoma is a long-time supporter of the Global Down Syndrome Foundation, and their government advocacy work that resulted in the establishment of the trans-NIH Down syndrome research program called the INCLUDE Project,” says Executive Director of the Down Syndrome Association of Central Oklahoma Sarah Soell. “We know first-hand from our families that the increased research funding is making a difference. We see real progress in the treatment of the many co-occurring conditions that we see in people with Down syndrome, including autoimmune conditions, regression disorder, sleep apnea, Alzheimer’s and more. Given the nearly twenty years of Down syndrome being the least funded genetic condition at the NIH prior to the INCLUDE Project, it is so important to pass this bill. We were so pleased that our representative Ephraim Bowling was able to join GLOBAL in meeting with Members of Congress and share his hope for a brighter future for his sister, Joy.”
GLOBAL had advocated for a trans-National Institutes of Health (NIH) Down syndrome research program since its inception in 2009. In 2017, three GLOBAL senior leaders, including board member, Frank Stephens, testified at the landmark House Appropriations Subcommittee on Labor, Health, and Human Services, Education, and Related Agencies Hearing entitled “Down Syndrome: Update on the State of the Science and Potential for Discoveries Across Other Major Diseases.” Frank Stephens’ testimony went viral that evening with 1 million views and today has over 200 million views. Shortly after the hearing, GLOBAL’s long-time advocacy goal was fulfilled, and the NIH established the INCLUDE (Investigation of Co-occurring conditions across the Lifespan to Understand Down syndrome) Project.
Since the INCLUDE Project was established as part of the FY2018 Labor-HHS appropriations bill, the program has funded nearly 500 unique awards from 21 of the 27 NIH institutes. At least eleven of these institutes did not participate in Down syndrome research prior to this program. The INCLUDE Project has also supported the development of the clinical trial infrastructure. Prior to the program, there were only two NIH clinical trials focused on people with Down syndrome. In just seven years, the INCLUDE Project is funding fifteen promising clinical trials with possible immediate or short-term impact for people with Down syndrome.
DeOndra Dixon INCLUDE Project Act Cosponsors (S. 1838; H.R. 3491)
- Senator John Hickenlooper (D-CO)*
- Senator Jerry Moran (R-KS)*
- Senator Cory Booker (D-NJ)
- Senator Markwayne Mullin (R-OK)
- Senator Michael Bennet (D-CO)
- Senator Alex Padilla (D-CA)
- Senator Shelley Moore Capito (R-WV)
- Senator Christopher Coon (D-DE)
- Senator Chris Van Hollen (D-MD)
- Representative Diana DeGette (D-CO-01)*
- Representative Richard Hudson (R-NC-09)*
- Representative Tom Cole (R-OK-04)
- Representative Rosa DeLauro (D-CT-03)
- Representative Pete Stauber (R-MN-08)
- Representative Paul Tonko (D-NY-20)
- Representative Brittany Pettersen (D-CO-07)
- Representative Angie Craig (D-MN-02)
- Representative Jason Crow (D-CO-06)
- Representative Joe Neguse (D-CO-02)
- Representative Mark Pocan (D-WI-02)
- Representative Ann Wagner (R-MO-02)
- Representative Deborah Ross (D-NC-02)
- Representative David Kustoff (R-TN-8)
- Delegate Eleanor Holmes Norton (D-DC)
The GLOBAL DC Fly-In concluded with a reception highlighting the achievements of the delegation and celebrating future advocacy efforts with dinner and dancing.
Please contact your U.S. Representatives and Senators and urge them to cosponsor the DeOndra Dixon INCLUDE Project Act.
GLOBAL Affiliate, the Crnic Institute for Down Syndrome, has five clinical trials specifically for patients with Down syndrome: Two in Alzheimer’s and Down Syndrome, one in Down Syndrome Regression Disorder, and two in autoimmunity and inflammation.
To read about the impactful research that the INCLUDE Project has funded visit the NIH Down Syndrome Coordinating Center Website.
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About 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 35 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.
Attachments
- Global Down Syndrome Foundation Annual DC Fly-In (February 2026)
- Global Down Syndrome Foundation Annual DC Fly-In (February 2026)
Anca Call Global Down Syndrome Foundation (720) 320-3832 acall@globaldownsyndrome.org Alex Lee Global Down Syndrome Foundation (720) 548-5631 alee@globaldownsyndrome.org
