Washington, D.C.– Rep. Cathy McMorris Rodgers (R-WA), Co-Chair of the Congressional Down Syndrome Caucus, introduced two pieces of legislation today to take Down syndrome research to the next level: The Trisomy 21 Research Resource Act of 2011 and the Trisomy 21 Centers of Excellence Act of 2011. Despite the prevalence of Down syndrome, research for a treatment and cure has lagged behind other medical conditions. These bills would ensure that Down syndrome research remains on par with the research infrastructure of other diseases.
“As the mom of a child with Down syndrome, I am forever grateful to the people in the disabilities community that welcomed my family with open arms,” said Rep. McMorris Rodgers. “Through them, I’ve learned about the potential of Down syndrome research – and not just for those who have Down syndrome, but also for those who have other conditions, as well. Our bill will increase the amount of Down syndrome research and the quality of that research. And by taking that research to the next level, we may generate breakthroughs for those who suffer from Alzheimer’s, autism, and other neurological disorders.”
Today, nearly 400,000 Americans live with Down syndrome. In 2000, Congress passed the Children’s Health Act which, among other things, authorized research for a number of conditions including juvenile diabetes, Fragile X, asthma, epilepsy, autism, and traumatic brain injuries. Down syndrome, however, was not included.
H.R. 2696, the Trisomy 21 Research Resource Act of 2011 authorizes current efforts already underway by national patient advocacy organizations, together with the National Institute of Child Health and Human Development, to establish three research databases that will provide the research community with access to information that has been otherwise hard to obtain. The second bill, H.R. 2695, the Trisomy 21 Centers of Excellence Act of 2011, recognizes six centers of excellence around the nation that will be dedicated to conducting and coordinating translational research.
Since individuals with Down syndrome are also afflicted with a number of other medical conditions, the enhanced research will not just benefit individuals with Down syndrome, but also millions of others who are afflicted with other conditions.