Floor SpeechBipartisan2026-08-06

DEONDRA DIXON INCLUDE PROJECT ACT OF 2026

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On 2026-08-06, Senator Bill Cassidy (R-LA) delivered a floor speech titled "DEONDRA DIXON INCLUDE PROJECT ACT OF 2026" in the Senate.

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DEONDRA DIXON INCLUDE PROJECT ACT OF 2026

Congressional Record, Volume 172 Issue 129 (Thursday, August 6, 2026) [Congressional Record Volume 172, Number 129 (Thursday, August 6, 2026)] [Senate] [Pages S4495-S4498] From the Congressional Record Online through the Government Publishing Office [ www.gpo.gov ] DEONDRA DIXON INCLUDE PROJECT ACT OF 2026 Mr. HICKENLOOPER. Mr. President, I ask unanimous consent for the Senate to pass S. 1838, the DeOndra Dixon INCLUDE Project Act. Thousands of Americans live with Down syndrome, and yet research has been underfunded for decades. In 2017, Congress encouraged the National Institutes of Health, the NIH, to launch the INCLUDE Project--an effort to make groundbreaking discoveries about conditions that disproportionately affect people with Down syndrome, like Alzheimer's disease. The INCLUDE Project brings together multiple NIH institutes under a coordinated approach that is already delivering significant scientific discoveries as well as new treatments. The bipartisan, bicameral DeOndra Dixon INCLUDE Project Act will officially authorize the INCLUDE Project into law. The bill will ensure that Congress and the American people have visibility into the scientific breakthroughs that are so needed for this community. The INCLUDE Project is already yielding significant scientific results, and Colorado is at the core of these scientific advances. Today, Colorado is proudly home to the world's leading Down syndrome advocacy, research, and medical care partners at the Global Down Syndrome Foundation, the Linda Crnic Institute for Down Syndrome, the Alzheimer's and Cognition Center, and the Sie Center at Children's Hospital Colorado. We need to make sure that improving health outcomes for individuals with Down syndrome remains a priority and do so in honor of DeOndra Dixon, an extraordinary person who was an advocate leaving a legacy that will help improve lives for generations. This bill has support on both sides of the aisle, including Senators Jerry Moran and Cory Booker and Representatives Diana DeGette and Richard Hudson. We also thank Senators Bennet, Padilla, Capito, Coons, Van Hollen, and Ossoff for their support. We are determined to get this bill across the finish line for DeOndra and for the thousands of Americans who will see their lives improve for the better by this critical research. Mr. President, as if in legislative session and notwithstanding rule XXII, I ask unanimous consent that the Committee on Health, Education, Labor, and Pensions be discharged and the Senate proceed to the immediate consideration of S. 1838. The PRESIDING OFFICER. The clerk will report the bill by title. The senior assistant legislative clerk read as follows: A bill (S. 1838) 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. There being no objection, the committee was discharged, and the Senate proceeded to consider the bill. Mr. HICKENLOOPER. Mr. President, I ask unanimous consent that the Hickenlooper substitute amendment at the desk be agreed to and that the bill, as amended, be considered read a third time. The PRESIDING OFFICER. Without objection, it is so ordered. The amendment (No. 6751), in the nature of a substitute, was agreed to as follows: (Purpose: In the nature of a substitute) Strike all after the enacting clause and insert the following: SECTION 1. SHORT TITLE. This Act may be cited as the ``DeOndra Dixon INCLUDE Project Act of 2026''. [[Page S4496]] 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 bill was ordered to be engrossed for a third reading and was read the third time. Mr. HICKENLOOPER. Mr. President, I know of no further debate on the bill, as amended. The PRESIDING OFFICER. Is there further debate? Hearing none, the bill having been read the third time, the question is, Shall the bill pass, as amended? The bill (S. 1838), as amended, was passed. Mr. HICKENLOOPER. Mr. President, I ask unanimous consent that the motion to reconsider be considered made and laid upon the table. The PRESIDING OFFICER. Without objection, it is so ordered. The PRESIDING OFFICER. The Senator from Maine. Recognizing the University of Maine Ms. COLLINS. Mr. President, I am very pleased that we could pass these two very important bills this afternoon. I would be remiss if I did not mention that the University of Maine has an excellent lab that specializes in testing ticks for pathogens, and it has worked very closely with our game wardens, with foresters, with the others who are routinely in the woods of Maine and are exposed to tick bites. It actually has developed a little tick kit where you can send the tick into the lab, and it will be tested for pathogens. So I would be remiss if I did not salute the University of Maine for its excellent work on tick-borne illnesses. This legislation is going to make a big difference in helping to advance their work, as well as the research at the MaineHealth research institute. I yield the floor. The PRESIDING OFFICER (Mr. Moreno). The Senator from Colorado. Down Syndrome Advocacy Mr. HICKENLOOPER. Mr. President, I also would be remiss if I didn't recognize, once again, the incredible partners that have been behind these Down syndrome advocacy, research, and medical care--primarily the Global Down Syndrome Foundation, but also the Linda Crnic Institute for Down Syndrome, the Alzheimer's and Cognition Center, and the Sie Center at Children's Hospital Colorado. I yield the floor. The PRESIDING OFFICER. The Democratic whip. For-profit Colleges and Universities Mr. DURBIN. Mr. President, a few years ago, I met a young woman who lives in the Chicago suburbs. She told me a story of her college career and what it led to. It was something I had never heard before. Her experience in trying to pursue a degree leading to law enforcement took her not to the normal, predictable academic sources, but to a new industry, which was opening up in our country--for-profit colleges and universities. Hers was a sad story. She had been enrolled in one of these for- profit colleges and paid the tuition, took the courses--some of them in person, some of them online

Referenced legislation: S1838, S1838

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DEONDRA DIXON INCLUDE PROJECT ACT OF 2026 Congressional Record, Volume 172 Issue 129 (Thursday, August 6, 2026) [Congressional Record Volume 172, Number 129 (Thursday, August 6, 2026)] [Senate] [Pages S4495-S4498] From the Congressional Record Online through the Government Publishing Office [ www.gpo.gov ] DEONDRA DIXON INCLUDE PROJECT ACT OF 2026 Mr. HICKENLOOPER. Mr. President, I ask unanimous consent for the Senate to pass S. 1838, the DeOndra Dixon INCLUDE Project Act. Thousands of Americans live with Down syndrome, and yet research has been underfunded for decades. In 2017, Congress encouraged the National Institutes of Health, the NIH, to launch the INCLUDE Project--an effort to make groundbreaking discoveries about conditions that disproportionately affect people with Down syndrome, like Alzheimer's disease. The INCLUDE Project brings together multiple NIH institutes under a coordinated approach that is already delivering significant scientific discoveries as well as new treatments. The bipartisan, bicameral DeOndra Dixon INCLUDE Project Act will officially authorize the INCLUDE Project into law. The bill will ensure that Congress and the American people have visibility into the scientific breakthroughs that are so needed for this community. The INCLUDE Project is already yielding significant scientific results, and Colorado is at the core of these scientific advances. Today, Colorado is proudly home to the world's leading Down syndrome advocacy, research, and medical care partners at the Global Down Syndrome Foundation, the Linda Crnic Institute for Down Syndrome, the Alzheimer's and Cognition Center, and the Sie Center at Children's Hospital Colorado. We need to make sure that improving health outcomes for individuals with Down syndrome remains a priority and do so in honor of DeOndra Dixon, an extraordinary person who was an advocate leaving a legacy that will help improve lives for generations. This bill has support on both sides of the aisle, including Senators Jerry Moran and Cory Booker and Representatives Diana DeGette and Richard Hudson. We also thank Senators Bennet, Padilla, Capito, Coons, Van Hollen, and Ossoff for their support. We are determined to get this bill across the finish line for DeOndra and for the thousands of Americans who will see their lives improve for the better by this critical research. Mr. President, as if in legislative session and notwithstanding rule XXII, I ask unanimous consent that the Committee on Health, Education, Labor, and Pensions be discharged and the Senate proceed to the immediate consideration of S. 1838. The PRESIDING OFFICER. The clerk will report the bill by title. The senior assistant legislative clerk read as follows: A bill (S. 1838) 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. There being no objection, the committee was discharged, and the Senate proceeded to consider the bill. Mr. HICKENLOOPER. Mr. President, I ask unanimous consent that the Hickenlooper substitute amendment at the desk be agreed to and that the bill, as amended, be considered read a third time. The PRESIDING OFFICER. Without objection, it is so ordered. The amendment (No. 6751), in the nature of a substitute, was agreed to as follows: (Purpose: In the nature of a substitute) Strike all after the enacting clause and insert the following: SECTION 1. SHORT TITLE. This Act may be cited as the ``DeOndra Dixon INCLUDE Project Act of 2026''. [[Page S4496]] 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 bill was ordered to be engrossed for a third reading and was read the third time. Mr. HICKENLOOPER. Mr. President, I know of no further debate on the bill, as amended. The PRESIDING OFFICER. Is there further debate? Hearing none, the bill having been read the third time, the question is, Shall the bill pass, as amended? The bill (S. 1838), as amended, was passed. Mr. HICKENLOOPER. Mr. President, I ask unanimous consent that the motion to reconsider be considered made and laid upon the table. The PRESIDING OFFICER. Without objection, it is so ordered. The PRESIDING OFFICER. The Senator from Maine. Recognizing the University of Maine Ms. COLLINS. Mr. President, I am very pleased that we could pass these two very important bills this afternoon. I would be remiss if I did not mention that the University of Maine has an excellent lab that specializes in testing ticks for pathogens, and it has worked very closely with our game wardens, with foresters, with the others who are routinely in the woods of Maine and are exposed to tick bites. It actually has developed a little tick kit where you can send the tick into the lab, and it will be tested for pathogens. So I would be remiss if I did not salute the University of Maine for its excellent work on tick-borne illnesses. This legislation is going to make a big difference in helping to advance their work, as well as the research at the MaineHealth research institute. I yield the floor. The PRESIDING OFFICER (Mr. Moreno). The Senator from Colorado. Down Syndrome Advocacy Mr. HICKENLOOPER. Mr. President, I also would be remiss if I didn't recognize, once again, the incredible partners that have been behind these Down syndrome advocacy, research, and medical care--primarily the Global Down Syndrome Foundation, but also the Linda Crnic Institute for Down Syndrome, the Alzheimer's and Cognition Center, and the Sie Center at Children's Hospital Colorado. I yield the floor. The PRESIDING OFFICER. The Democratic whip. For-profit Colleges and Universities Mr. DURBIN. Mr. President, a few years ago, I met a young woman who lives in the Chicago suburbs. She told me a story of her college career and what it led to. It was something I had never heard before. Her experience in trying to pursue a degree leading to law enforcement took her not to the normal, predictable academic sources, but to a new industry, which was opening up in our country--for-profit colleges and universities. Hers was a sad story. She had been enrolled in one of these for- profit colleges and paid the tuition, took the courses--some of them in person, some of them online Referenced legislation: S1838, S1838