Jamie Foxx is calling on Congress to pass a bill to fund Down syndrome research

On December 4th, the largest number of self-advocates with Down syndrome came to Capitol Hill. They came from 23 states to attend a congressional briefing hosted by the GLOBAL Down Syndrome Foundation, Senator John Hickenlooper (D-CO) and Representative Cathy McMorris Rodgers (R-WA). We brought together families, nonprofit leaders, researchers and policymakers to urge the Senate to pass the DeOndra Dixon INCLUDE Project Act with a critical five-year, $250 million funding plan.

This unprecedented legislation is our chance to advance research and significantly improve health care for people with Down syndrome, close long-standing gaps in our medical understanding and generate important insights that could also benefit people without Down syndrome.

It is also a legacy for two women who have significantly improved the lives of thousands of people with Down syndrome: Rep. Cathy McMorris Rodgers and DeOndra Dixon, Jamie’s sister and GLOBAL ambassador.

The National Institutes of Health established the INCLUDE (INvestigation of Co-occurring states across the Lifespan to Understand Down syndromeE) project in 2018, as a result of GLOBAL’s advocacy and McMorris Rodger’s leadership. Down syndrome is the leading cause of developmental delay, but before the INCLUDE project it was the least funded genetic disorder at the NIH for nearly two decades. It takes time to reverse years of underfunding and discrimination, but we are doing just that. Today, the INCLUDE project is a gold standard for NIH inter-institutional investment and research harmonization, delivering dramatic translational results in a very short period of time.

The INCLUDE project aims to capitalize on the fact that people with Down syndrome are highly predisposed to certain diseases, such as Alzheimer’s disease, congenital heart disease and autoimmune diseases, and are well protected from others, including solid tumors and certain types of heart attacks and strokes. With continued, sufficient funding, INCLUDE can fully explore these areas and accelerate breakthroughs that have the potential to transform health care for people with Down syndrome and millions of others without Down syndrome.

The DeOndra Dixon INCLUDE Project Act will ensure that discriminatory bias against Down syndrome research does not reoccur. While we have made progress through NIH funding of the INCLUDE project, a funding plan of $250 million each year would enable incremental growth that will sustain and expand important, in-depth, longitudinal studies leading to dramatically longer lifespans and Quality of life of our children leads adults with Down syndrome.

Additionally, we find that better overall health improves cognition, which can lead to the ability to be more engaged in all aspects of society. We call on Congress to seize this opportunity for both the Down syndrome community and the millions of people suffering from Alzheimer’s disease, solid tumors, and the like who will benefit from this research and legislation.

This bill honors the memory of GLOBAL Ambassador DeOndra Dixon, Jamie’s younger sister, who passed away shortly after her 36th birthday. DeOndra was vibrant, intelligent and a fearless advocate for her community. When we lost DeOndra, we both lost a part of our souls. Her life highlights the urgent need to address health disparities in the population with Down syndrome, which are shaped by race, gender, geography and co-occurring conditions. The INCLUDE Project supports research that addresses these inequalities, covering specialist care, mental health and more. This integrative approach improves the care of people with Down syndrome while providing valuable insights for the advancement of broader medical research.

Rep. Cathy McMorris Rodgers has been a tireless advocate since the birth of her son Cole. She introduced the DeOndra Dixon INCLUDE Project Act through the House Energy and Commerce Committee and helped organize the first-ever congressional hearing on Down syndrome research in 2017. As she prepares to leave Congress, we are committed to to make this bill a lasting part of her heart’s legacy.

Legislation is not just about research funding. In the past, people with Down syndrome have been excluded from clinical trials, even for Alzheimer’s disease, which affects 80% of this population. This bill aims to end this exclusion by supporting research tailored to their individual needs while ensuring wider participation in studies. It is a step towards equity in science and care that will benefit not only people with Down syndrome, but the healthcare system as a whole.

At GLOBAL, we work with researchers, scientists and health professionals who have made significant contributions to improving understanding in areas related to Down syndrome, but are hampered by funding limitations. We have also seen the power of medical research to transform lives. Decades of advances in diseases such as cancer, diabetes and heart disease remind us that breakthrough advances are possible when we make appropriate investments.

We can’t afford to wait. Science has already shown us the unique opportunities for discovery in Down syndrome research. By adopting the DeOndra Dixon INCLUDE Project Act in full, Congress can ensure these opportunities are realized and unlock progress that will benefit people with Down syndrome, people with related conditions, and the 60% of Americans living with illnesses that Those who have Down syndrome are predisposed to or protected from it.

This is not about politics – this is about humanity. This legislation can bring people together and potentially impact countless lives. We call on the Senate to honor the legacy of DeOndra Dixon, who inspired this act, by paving a path to better health care, scientific equity, and a future of opportunity.

Michelle Sie Whitten is President and CEO of the GLOBAL Down Syndrome Foundation. Jamie Foxx is an Oscar and Grammy Award winner and a global international speaker.