Pathfinder Village Supports Continued Research into Down Syndrome

EDMESTON, NEW YORK, November 6, 2017 ... Pathfinder Village, in solidarity with the greater Down syndrome community, supports continued funding for Down syndrome research at the National Institutes of Health. 

Frank Stephens, a noted self-advocate, and other spokesmen for the greater community testified in support of continued research before the House Appropriations Labor, Health and Human Services, and Education Subcommittee, chaired by Rep. Tom Cole of Oklahoma. The late October hearings were held to offer insights on "Down Syndrome: Update on the State of the Science and Potential for Discoveries Across Other Major Diseases."

In his statement, Mr. Stephens said that people who view those with Down syndrome as without value have “an outdated idea of life with Down syndrome.” 

“Seriously, I have a great life,” he said. “I have lectured at universities, I have acted in an award winning film and on an Emmy winning TV show, and spoken to thousands of young people about the value of inclusion in making America great." 

In his written statement, Mr. Stephens cited the high rates of abortion globally for those diagnosed through pre-natal testing for Down syndrome.  A recent CBS report said that in Iceland, 100 percent of pregnacies that test positive for Trisomy 21 are terminated. According to CBS, the U.S. has an estimated abortion rate of 67 percent for unborn babies diagnosed with the condition (1995-2011 statistics).

Mr. Stephens added, "We are the canary in the eugenics coal mine. We are giving the world a chance to think about the ethics of choosing which humans get a chance at life.”  He also highlighted some of the benefits of Down syndrome research, including increased knowledge about cancer, immune system disorders, and Alzheimer's disease. 

He said, “I cannot tell you how much it means to me that my extra chromosome might lead to the answer to Alzheimer’s. It is likely that this thief will one day steal my memories, my very life from me. This is very hard for me to say, but it has already begun to steal my Mom from me. Please think about all those people you love the way I love my Mom.”

Stephens also cited a Harvard based study that “discovered that people with Down syndrome, as well as their parents and siblings are happier than society at large.”

“Let’s be America, not Iceland or Denmark. Let’s pursue answers, not ‘final solutions,’” he concluded. “Let’s be America. Let’s make our goal to be Alzheimer’s free, not Down syndrome free.”

Mr. Stephen's tesimony appears below, courtesy of C-SPAN.