Underfunding of Down Syndrome Research

I was shocked to find out that funding for research on Down syndrome has dropped dramatically in recent years. Funding of $23 million in 2003 has dropped to $17 million in 2008. This means that only $40 in research is being committed to each person with Down syndrome. $40!!!  In contrast, $3,000 in research is being allocated to each person with cystic fibrosis and $1,500 towards persons with Fragile X syndrome, both far less common medical conditions.  The reasons for this are that the number of people with Down syndrome is declining due to increased prenatal screening and what appears to be a growing trend among pregnant women to terminate their pregnancy if it’s likely their child will have Down syndrome.  Secondly, there is much more noise being made on behalf of other types of developmental disabilities. In particular, the money, star power and media attention behind the effort for more research for autism has overwhelmed many policy makers. Because young scientists are likely to seek funding focused on another disability, they’re less likely to devote their time and effort to 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.

There is hope though.  DownSyndrome Achieves is a national organization that was started last year in Columbus and is taking the lead in building research programs that will provide researchers the ability to conduct Down syndrome research.  DownSyndrome Achieves is credited with forming the nation's first Down syndrome research consortium, which will share resources, knowledge, information and technologies to accelerate DS research. The consortium consists of medical directors, clinicians, and researchers from nine different pediatric and academic institutions, including Cincinnati Children's Hospital, Nationwide Children's Hospital, and the Cleveland Clinic.  The leaders of the organization are families from Columbus and have kiddos with Ds and are very dedicated to the mission.  They are making good strides, but there is a lot of work to do.  Visit their website to join or donate or learn more... http://www.dsachieves.org/ .

Also check out these articles about funding and legislation.
Kathy Ireland has a niece with Down syndorme and speaks out about the tragic shortfall in Ds research... http://www.aolnews.com/2010/10/11/kathy-ireland-the-tragic-shortfall-in-down-syndrome-research/
Cathy McMorris (R-WA) has a daughter with Ds and introduces two bills to aid Down syndrome research...
http://mcmorris.house.gov/index.cfm?sectionid=96&sectiontree=25%2C96&itemid=1922