DEONDRA DIXON INCLUDE PROJECT ACT OF 2025

On 2026-07-20, Representative Gabe Evans (R-CO-8) delivered a floor speech titled "DEONDRA DIXON INCLUDE PROJECT ACT OF 2025" in the House.

DEONDRA DIXON INCLUDE PROJECT ACT OF 2025

Congressional Record, Volume 172 Issue 118 (Monday, July 20, 2026) [Congressional Record Volume 172, Number 118 (Monday, July 20, 2026)] [House] [Pages H4649-H4651] From the Congressional Record Online through the Government Publishing Office [ www.gpo.gov ] DEONDRA DIXON INCLUDE PROJECT ACT OF 2025 Mr. GUTHRIE. Mr. Speaker, I move to suspend the rules and pass the bill (H.R. 3491) to amend the Public Health Service Act to authorize the Secretary of Health and Human Services to carry out a program of research, training, and investigation related to Down syndrome, and for other purposes. The Clerk read the title of the bill. The text of the bill is as follows: H.R. 3491 Be it enacted by the Senate and House of Representatives of the United States of America in Congress assembled, [[Page H4650]] SECTION 1. SHORT TITLE. This Act may be cited as the ``DeOndra Dixon INCLUDE Project Act of 2025''. SEC. 2. DEONDRA DIXON INCLUDE PROJECT. Part B of title IV of the Public Health Service Act (42 U.S.C. 284 et seq.) is amended by adding at the end the following: ``SEC. 409K. DOWN SYNDROME RESEARCH. ``(a) In General.--The Director of NIH shall carry out a program of research, training, and investigation related to Down syndrome to be known as the `INvestigation of Co- occurring conditions across the Lifespan to Understand Down syndromE Project' or the `INCLUDE Project'. ``(b) Program Elements.--The program under subsection (a) shall include-- ``(1) high-risk, high-reward research on the effects of trisomy 21 on human development and health; ``(2) promoting research for participants with Down syndrome across the lifespan, including cohort studies to facilitate improved understanding of Down syndrome and co- occurring conditions and development of new interventions; ``(3) expanding the number of clinical trials that are inclusive of, or expressly for, participants with Down syndrome, including novel biomedical and pharmacological interventions and other therapies designed to promote or enhance activities of daily living; ``(4) research on the biological mechanisms in individuals with Down syndrome pertaining to structural, functional, and behavioral anomalies and dysfunction as well as stunted growth; ``(5) supporting research to improve diagnosis and treatment of conditions co-occurring with Down syndrome, including the identification of biomarkers related to risk factors, diagnosis, and clinical research and therapeutics; ``(6) research on the causes of increased prevalence, and concurrent treatment, of co-occurring conditions, such as Alzheimer's disease and related dementias and autoimmunity, in individuals with Down syndrome; and ``(7) research, training, and investigation on improving the quality of life of individuals with Down syndrome and their families. ``(c) Coordination; Prioritizing Nonduplicative Research.-- The Director of NIH shall ensure that-- ``(1) the programs and activities of the institutes and centers of the National Institutes of Health relating to Down syndrome and co-occurring conditions are coordinated, including through the Office of the Director of NIH and priority-setting reviews conducted pursuant to section 402(b)(3); and ``(2) such institutes and centers, prioritize, as appropriate, Down syndrome research that does not duplicate existing research activities of the National Institutes of Health. ``(d) Consultation With Stakeholders.--In carrying out activities under this section, the Director of NIH shall, as appropriate and to the maximum extent feasible, consult with relevant stakeholders, including patient advocates, to ensure that such activities take into consideration the needs of individuals with Down syndrome. ``(e) Biennial Reports to Congress.-- ``(1) In general.--The Director of NIH shall submit, on a biennial basis, to the Committee on Energy and Commerce and the Subcommittee on Labor, Health and Human Services, Education, and Related Agencies of the Committee on Appropriations of the House of Representatives and the Committee on Health, Education, Labor, and Pensions and the Subcommittee on Labor, Health and Human Services, Education, and Related Agencies of the Committee on Appropriations of the Senate, a report that catalogs the research conducted or supported under this section. ``(2) Contents.--Each report under paragraph (1) shall include-- ``(A) identification of the institute or center involved; ``(B) a statement of whether the research is or was being carried out directly by such institute or center or by multiple institutes and centers; and ``(C) identification of any resulting real-world evidence that is or may be used for clinical research and medical care for patients with Down syndrome.''. The SPEAKER pro tempore. Pursuant to the rule, the gentleman from Kentucky (Mr. Guthrie) and the gentlewoman from Colorado (Ms. DeGette) each will control 20 minutes. The Chair recognizes the gentleman from Kentucky. General Leave Mr. GUTHRIE. Mr. Speaker, I ask unanimous consent that all Members may have 5 legislative days to revise and extend their remarks on the legislation and include extraneous material on H.R. 3491. The SPEAKER pro tempore. Is there objection to the request of the gentleman from Kentucky? There was no objection. Mr. GUTHRIE. Mr. Speaker, I yield myself such time as I may consume. Mr. Speaker, I rise in strong support of H.R. 3491, led by my colleagues Representatives DeGette and Hudson. This bill would authorize the INCLUDE Project at the National Institutes of Health, which advances research into Down syndrome to improve the health and quality of life of individuals with Down syndrome and their families. This project investigates conditions that affect people with Down syndrome, as well as the general public, with a hope of improving our understanding of the condition and advancing the quality-of-life outcomes for individuals with Down syndrome and patients facing similar medical issues. I encourage my colleagues to support this bill, and I reserve the balance of my time. {time} 1600 Ms. DeGETTE. Mr. Speaker, I yield myself such time as I may consume. Mr. Speaker, my bill with Representative Hudson, the DeOndra Dixon INCLUDE Project Act, codifies the renaissance in Down syndrome research at NIH that was kicked off when the INCLUDE Project began in 2018. This bill sustains and encourages this critical research. After being left behind by NIH for nearly 20 years, the Down syndrome community is finally seeing research advancements that will extend and improve their lives. What we learn from this research will not only help us better understand Down syndrome but also heart disease, Alzheimer's, cancer, and many co-occurring conditions. I am so proud that much of this work is happening right in my home district of Denver, Colorado. The Crnic Institute for Down syndrome on the Anschutz Medical Campus leads more than 200 scientists at the largest Down syndrome research facility in the world. They see incredible breakthroughs every day. This type of innovation puts science first and benefits not only individuals living with Down syndrome and their families but every single one of us because we are learning more and more about disease biology and just why some conditions work differently in people with Down syndrome. It is why the bill passed the House last Congress with unanimous support. I am so happy that I was able to work for many years with my friend, the former chair of the Energy and Commerce Committee, Cathy McMorris Rodgers, on this bill in the last Congress. I know it is a labor of love and deeply personal for her family and every family that has been touched by Down syndrome. It has been an honor to also work with my constituent, Michelle Sie Whitten, the president of the Quincy Jones Exceptional Advocacy Award, a driving force for this bill, and a fierce advocate for her daughter and everyone with Down syndrome. It has also been an honor to work with my friend and colleague Representative Hudson, whose dedication to the Down syndrome community has been essential to push this bill closer to the finish line. I simply could not have had a better partner on this issue. The INCLUDE Project Act will ensure that critical Down syndrome research continues to advance. This year, it must finally be enacted into law. I urge my colleagues to join Representative Hudson and me to support the bill, and I reserve the balance of my time. Mr. GUTHRIE. Mr. Speaker, I have no further speakers. I reserve the balance of my time. Ms. DeGETTE. Mr. Speaker, I yield 2 minutes to the distinguished gentleman from New York (Mr. Tonko), another great advocate for this bill. Mr. TONKO. Mr. Speaker, I thank my colleague from Colorado for yielding. I rise in strong support of the DeOndra Dixon INCLUDE Project Act and applaud my colleagues, Representative Diana DeGette and Richard Hudson, for championing this critical piece of legislation. The DeOndra Dixon INCLUDE Project Act will help ensure the NIH INCLUDE Project continues advancing research that improves health outcomes, expands scientific understanding, and enhances quality of life for individuals with Down syndrome and their families. This legislation builds upon one of our Nation's most successful investments in Down syndrome research. Already, these investments have led to major breakthroughs in how Down syndrome interacts with other health conditions that have a high incidence in the community, such as immune system disorders, cancer, Alzheimer's, and more. [[Page H4651]] Every one of these breakthroughs carries the hope for a brighter tomorrow for individuals living with Down syndrome. I would also like to recognize that this progress doesn't happen without sustained advocacy. In particular, I would like to highlight the role of the Quincy Jones Exceptional Advocacy Award and its founder, Michelle Sie Whitten, for their tireless advocacy to make this happen today. I again thank our co-leads, Representatives DeGette and Hudson, 

Referenced legislation: HR3491, HR3491