DeOndra Dixon INCLUDE Project Act of 2024

Mr. Speaker, I thank Chairwoman Rodgers for her support and steadfast leadership on this issue.

Mr. Speaker, I rise today to speak not just as a Member of Congress but as a father to a 22-year-old young man with Down syndrome. My son is a living testament to the fact that his value and his potential extend far beyond any limitations imposed by his disability.

Society must never devalue any human life for a perceived flaw or defect. For too long, our society did just that with how it viewed and treated people with Down syndrome, but when we stopped sending people to institutions and started providing proper medical care, such as surgery for those with a congenital heart defect, we saw their life spans increase beyond what doctors told society was possible.

The DeOndra Dixon INCLUDE Project Act is a critical step toward advancing our understanding of Down syndrome and improving the quality of life for those living with it.

Named in honor of DeOndra Dixon, whose life exemplified resilience and excellence, this bill seeks to advance our collective effort to ensure that every individual, regardless of their circumstance, receives the respect and care they deserve.

This legislation will provide crucial statutory authority for an essential research initiative under the National Institutes of Health. The INCLUDE Project dedicated to this cause will benefit from solidified funding and framework.

This bill would enable sustained and coordinated efforts to address not only the primary characteristics of Down syndrome but also the occurring conditions that can impact individuals' health and well- being, such as Alzheimer's disease, which was previously mentioned.

Individuals with Down syndrome have a completely different disease spectrum than that of the general population, predisposing them to many conditions but protecting them from others.

INCLUDE allows for more specialized research, which will lead people with Down syndrome to live even longer, better lives, and it will create breakthroughs in identifying treatments and cures for some of the most devastating diseases that affect people like you and me.

Mr. Speaker, I urge my fellow Members to join me in voting ``yes'' on the DeOndra Dixon INCLUDE Project Act. Let us stand together to support this important initiative and ensure that scientific advancements lead to tangible improvements in the lives of individuals with Down syndrome.

Mr. Speaker, I move to suspend the rules and pass the bill (H.R. 7406) 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, as amended.

Mr. Speaker, I ask unanimous consent that all Members may have 5 legislative days in which to revise and extend their remarks and include extraneous material on the bill.

Mr. Speaker, I yield myself such time as I may consume.

Mr. Speaker, I rise today in support of H.R. 7406, the DeOndra Dixon INCLUDE Project Act of 2024, which I have led alongside my colleagues Diana DeGette, Tom Cole, Rosa DeLauro, Pete Stauber, and Eleanor Holmes Norton.

As many know, one of my primary missions here in Congress has been to improve the lives of individuals with disabilities. It is deeply personal to me.

Our son, Cole, was born with that extra 21st chromosome, and for the past 17 years, I have seen the world through his eyes. It has made me a better mom and a better legislator.

When the INCLUDE Project was established in 2018, Down syndrome was among one of the least studied and funded genetic conditions at NIH despite being the most common chromosome abnormality, affecting 1 in every 700 babies.

Individuals with Down syndrome also have an increased risk of common diseases and medical conditions, such as cardiac issues, autoimmune conditions, and an early onset Alzheimer's-type dementia, which means the value of this research is hardly limited to the Down syndrome community. It has the potential to provide benefits to millions of people battling other conditions, as well.

The INCLUDE Project has made great strides, funding over 200 research awards, producing at least 600 publications, and helping to coordinate Down syndrome research and resources at over 20 institutes and centers.

H.R. 7406 will help us take Down syndrome research to new heights and usher in a new era of breakthroughs to ensure that every person with Down syndrome and their families have the opportunity to reach their full potential.

Mr. Speaker, I urge my colleagues to support this bill, and I reserve the balance of my time.

Mr. Speaker, I yield 5 minutes to the gentleman from Minnesota (Mr. Stauber), the dad of Isaac, most importantly.

Mr. Speaker, I encourage my colleagues to support the bill, and I yield back the balance of my time.

Mr. Speaker, I yield myself such time as I may consume.

Mr. Speaker, I rise to speak in support of H.R. 7406, the DeOndra Dixon INCLUDE Project Act, sponsored by Chair Rodgers and Representatives DeGette, Cole, Holmes Norton, and others.

This bill would reauthorize for 5 years funding for the INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE. It is known as the INCLUDE Project at the National Institutes of Health.

This bill is named in honor of DeOndra Dixon, a lifelong advocate for the Down syndrome community. DeOndra was born with Down syndrome and was a tireless advocate for those with the disease. She was an awardee of the 2009 Quincy Jones Exceptional Advocacy Award and a 2011 ambassador for the Quincy Jones Exceptional Advocacy Award.

Sadly, DeOndra passed away in October 2020, but her memory lives on with her loved ones and the many people who she helped throughout her years of advocacy.

H.R. 7406 honors her legacy by continuing to support and fund Down syndrome research through the NIH.

Since its launch in 2018, the INCLUDE Project at NIH has been a key mechanism to fund Down syndrome research. In my district, Rutgers University received funding from the INCLUDE Project to study the predisposition people with Down syndrome have for Alzheimer's disease.

Studies like these help the scientific community better understand the disease and ensure those diagnosed with Down syndrome can live life to their fullest potential. This legislation would reauthorize funding for the program for 5 years and ensure that we continue to make progress in Down syndrome research.

I thank Chair Rodgers for her leadership on this issue. She has been a champion for people living with disabilities, and her advocacy for the INCLUDE program demonstrates that ongoing commitment.

Mr. Speaker, I encourage my colleagues to vote ``yes'' to reauthorize this legislation, and I reserve the balance of my time.

Mr. Speaker, this is such an important bill that does research on not only Down syndrome but other conditions, and I urge my colleagues to support it on a bipartisan basis. I yield back the balance of my time.