Advocates Urge Congress to Increase Funding for Down Syndrome Research

We’ve learned a lot about Down syndrome since it was first identified 150 years ago, but there’s still a lot we don’t know. Now medical experts and advocates are urging Congress to properly fund research to better the lives of people with Down syndrome.

Self-advocate, national speaker and actor John Franklin Stephens urged the House Appropriations Committee on Wednesday to increase funding for Down syndrome research:

“I don’t feel like I should have to justify my existence, but to those that question the value of people with Down syndrome I would make three points. First, we are a medical gift to society. A blue print for medical research into cancer, Alzheimers, and immune system disorders. Second, a Harvard study found that people with Down syndrome and their families are happier than the larger society. Surely happiness is worth something. Thirdly, we are the canary in the eugenics coal mine. We are giving the world the chance to think about the ethics of choosing which humans get a chance at life,” Stephen’s proclaimed. 

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If you haven’t had a chance to hear his entire testimony, it’s worth the 8 minutes! Fellow advocates in attendance told me his speech was extremely moving and brought most in the committee room to tears.

According to Global Down Syndrome Foundation CEO and President, Michelle Sie Whitten, “there’s a significant disparity in Down syndrome research funding compared to other less common disorders.” The National Institutes of Health (NIH) decreased funding for Down Syndrome from $29 million to $14 million from 2001 to 2009. Whitten says this decline happened while funding to the NIH actually increased.

DS-Connect: What You Can Do Today to Help with Down Syndrome Research

Self-Advocates like John Franklin Stephens and even my 5-year-old son, Troy, stand ready to participate in research that will improve the lives of people with Down syndrome and all of humanity. A simple way they’ve done this is through DS-Connect.

It literally took me 5 minutes to complete the online NIH health registry with Troy’s information. Families can use the registry to connect with researchers medical providers, express interest in participating in clinical studies, take confidential health surveys that researchers can use to better understand the health of people with Down syndrome. Click here to join DS-Connect registry.

Another great opportunity to get involved is the Human Trisomy Project through the Linda Crnic Institute. By enrolling your loved one, researchers can better understand why people with Down syndrome are protected from certain medical conditions while being more susceptible to others. Click here to learn more.

Why should your loved one be involved in Down syndrome research?

Because of these startling facts:

100% of people with Down syndrome will have the brain pathology of Alzheimers by age 40.

30% of people with Down syndrome suffer from immune disorders

30% of people with Down syndrome fought leukemia; while all other types of cancers remain rare or non-existent for this population.

The big question is WHY? Researching Down syndrome may unlock answers to America’s top killers.

“Despite our advocacy, funding has been flat over the past decades. Despite being the leading cause of developmental delay, our funding has plummeted while NIH budget increase” laments Whitten at yesterday’s appropriation’s hearing.

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Executive Director of Linda Crnic Institute for Down Syndrome, Dr. Joaquin Espinosa, made the argument to committee members that increased NIH funding would also do more than help unlock clues to Alzheimers and cancer:

“There are 4 times as many people living with Down syndrome today as in the 1950s. Life expectancy has more than doubled since 1980s. People with Down Syndrome are here to stay. Simple interventions improved life expectancy. With specialized research people with Down syndrome will live longer, better lives. How much longer should people with Down syndrome wait to get their fair share of the biomedical research dollars? I think the time to act is now!”

Again, John Franklin Stephens brought the message home as a man living with Down syndrome:

“Let’s be America. Not Iceland and Denmark. Let’s solve problems and find solutions, not allow for “final solutions.” The number of people with Down syndrome is getting larger, not smaller, and so is the need. The American citizens living with Down syndrome deserve to know that their is funding and medical care available to them that allows them to reach their full potential. Let’s make our goal to be Alzheimer’s free, not Down syndrome free,” Stephen’s implores!

Members of both parties seemed overwhelmingly supportive of Stephens and other advocate’s plea for more NIH funding. The House Appropriations Committee will now move to vote on whether or not to increase funding for Down syndrome research within the NIH budget. I’ll keep you up-to-date on their vote.

Have you registered your love one with Down syndrome for DS-Connect or the Human Trisomy Project? Tell me what you think below.