- - Monday, May 23, 2022

Almost every one of us has a friend, family member or a loved one with Down syndrome. It’s estimated that there are over 400,000 Americans with Down syndrome. For me, it’s personal. Three and a half years ago, our world was blessed with a sweet baby boy named Andrew, and he has Down syndrome. His parents are my friends, and their world would not be the same without him.

While Down syndrome is the world’s leading cause of developmental delay, for nearly 20 years, it was one of the least funded genetic conditions at the National Institutes of Health. The numbers just weren’t adding up, and it was unacceptable.

For years, I’ve been working to increase awareness and research funding for Down syndrome, and while this is a step in the right direction and enjoys broad bipartisan support, more must be done. Well-funded research can help improve health outcomes for people with Down syndrome and even lead to new treatments — or even cures — for diseases that contribute to 60% of all deaths in the U.S.



This lack of research is full of untapped potential. People with Down syndrome have a unique disease profile; they are highly predisposed to certain conditions, including autoimmune disorders and Alzheimer’s while also highly protected from other diseases, such as solid tumors and certain types of heart attacks and strokes.

This interesting genetic profile can be used to help a wide group of Americans. In fact, researchers at the Linda Crnic Institute for Down Syndrome made the remarkable discovery that Down syndrome can be categorized as an immune disorder. Using this breakthrough, the NIH funded a clinical trial using a Food and Drug Administration-approved rheumatoid arthritis drug to treat chronic inflammation, immune skin conditions, thyroid function and psoriatic arthritis in people with Down syndrome.

Similarly, scientists at the Crnic Institute are engaged in another important clinical trial to treat patients with Alzheimer’s using an FDA-approved chemotherapy treatment. Their work is already showing great promise, which is welcome news since an estimated 70% of people with Down syndrome over the age of 40 will be diagnosed with early onset of Alzheimer’s. This research could lead to a discovery that could exponentially increase the quality of life for the 400,000 Americans with Down syndrome.

These important breakthroughs — along with many other ongoing research studies around the world — help shine a new light on how research can deliver on the promise of elongating life and improving health outcomes for people with Down syndrome.

While these breakthroughs are promising, there are still many unknowns about the best care practices for people with Down syndrome, especially adults. One in about every 700 babies born in this country has Down syndrome. Hundreds of thousands of people are living with the condition in the U.S., and an estimated 9 million worldwide. These are precious lives created by God, which is why it’s so important we continue learning and providing the proper care, support and advocacy needed.

It’s not often many issues bring both sides of the aisle together in the United States Senate, however, support for policies that help ensure a brighter future for people with Down syndrome is one of them. Many of us in Congress, myself included, have deep personal connections with these individuals, and we celebrate how people with Down syndrome are co-workers, dear friends, neighbors, actors, artists, activists, models and students. They are integral members of our communities.

I recently teamed up with my colleague from across the aisle, Colorado Sen. John Hickenlooper, to co-sponsor a bipartisan Senate resolution that designated March as “World Down Syndrome Month” to raise awareness and celebrate people with Down syndrome.

This week, Global Down Syndrome Foundation (GLOBAL), the leading Down syndrome research and medical care nonprofit, will hold its annual AcceptAbility Gala in Washington. I’ll be accompanied at the event by many colleagues across the aisle as well as many advocates of the Down syndrome community. 

GLOBAL’s event will honor Jonah Berger, a young man who has a dual diagnosis of Down syndrome and autism, like nearly a fifth of people with Down syndrome. Jonah is GLOBAL’s 2022 Ambassador, and he brings joy to everyone he meets.

Jonah represents the millions of people around the world who stand to benefit from more research funding. The current Down syndrome research budget is approximately $115 million, and while it has grown from $27 million in 2016, we still have a long way to go before reach is funded enough to propel continuous, measurable research progress that is long overdue.

I hope my colleagues will join me in the commitment to a new era in research fairness — where people with Down syndrome have the respect, the care and the future they so deserve.

• Steve Daines is an American politician and former corporate executive serving as the junior United States senator for Montana since 2015.

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