Research Down Syndrome (RDS), a nonprofit foundation that is among the leading sources for funding of Down syndrome related cognitive research, is entering the second year of its national running program, Race for the Extraordinary, to help increase public awareness and funding for Down syndrome research. The mission of RDS is the development of safe and effective therapies to address the intellectual difficulties associated with Down syndrome.
Building on successful marathon and other race events during 2011 in major cities, including New York City, Chicago and San Diego, RDS is expanding its running program to greatly increase its research funding, and has been accepted as a charity partner in multiple marathons across the country. Shorter fun races are being organized as well. "We are grateful for the enthusiastic support we received in events during 2011," states Dr. Robert Schoen, RDS President, "Our goal is to support persons with Down syndrome by significantly increasing our fundraising in 2012."
Advances in Down syndrome research have led to such progress as the recent initiation by Roche Pharmaceuticals of a Phase 1 clinical trial to investigate the safety and tolerability of a molecule designed to address the cognitive and behavioral deficits associated with Down syndrome. The RDS Race for the Extraordinary initiative will add increased support for such research.
In recent decades, improved health care, expanded education and community opportunities, and the support of families and advocacy groups has improved the quality of life for individuals with Down syndrome. As a result, Dr. Schoen notes, "Over the past 30 years, the life expectancy of those with Down syndrome has more than doubled -- underscoring the importance of development of treatments that will assist this population to achieve and maintain independent living."
Down syndrome is the result of an extra copy of the genetic material present on chromosome 21. It is the most frequently occurring chromosomal abnormality, with an incidence of approximately 1 of every 700 live births. Currently there are an estimated three million persons with Down syndrome worldwide, including approximately 400,000 in the United States. The extra chromosomal material impacts the body's and brain's normal development and manifests differently in each individual, including physical traits such as short stature and low muscle tone, and health conditions such as congenital heart defects and hearing deficits.