Monthly Archives: September 2011

Down Syndrome Consortium Formed

NIH, Down syndrome groups to meet regularly for exchange of information, ideas to form a Down syndrome consortium. Read more.


Press Release: Down Syndrome Research Consortium Established

The National Institutes of Health has joined with organizations interested in Down syndrome to form a consortium that will foster the exchange of information on biomedical and biobehavioral research on the chromosomal condition.  Read full press release.

Per Dr. Yvonne Maddox, Deputy Director, NIH Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), “A single, comprehensive forum will make the research effort to address Down syndrome more effective, minimizing duplication of effort and capitalizing on the knowledge of those with the greatest experience in the field”.

RDS will participate as a consortium member. The establishment of a Contact Registry is the first order of business.

A Day of Learning With America

Karen and Rick Shea organized and hosted a Teaching Pro-Am Golf Tournament on September 20, 2011 at Roxiticus Golf Club in Mendham, New Jersey to benefit Research Down Syndrome.  “A Day of Learning” was a unique event with a clinic led by PGA Tour coach Mike Bender, who Golf Digest calls “One of America’s Top 10 Greatest Teachers”.  Participants in the event included Brad Hennefer, a young man with Down syndrome who started the Golf for Life Foundation.  24 Teaching Pros from around the country were included in each foursome.  The teaching pros included PGA National Teachers of the Year, as well as LPGA National Teachers of the Year. The round of golf was followed by dinner, prizes and fun.

RDS thanks special guests Mike Bender and Brad Hennefer, as well as Lorin and Cheryl Anderson, and all the teaching professionals. Their participation made this a truly memorable day. RDS also thanks all of the sponsors, donors, and golfers who contributed to the success of this event. We are particularly thankful to Karen and Rick Shea. We are deeply moved by their devotion to this cause. Their support of Research Down Syndrome has been invaluable.

Get Event Details >

Roche Phase 1 Clinical Trial of Molecule to Treat Down Syndrome Cognitive Difficulties Announced

The announcement by Roche 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 represents a landmark step in research addressing the memory, learning and communication challenges of those with Down syndrome.  Specific information regarding this trial may be found on the Roche Clinical Trial Protocol Registry. The initiation of this clinical trial provides tangible indication of progress in the rapidly advancing area of Down syndrome cognitive research that has received significant non-profit foundation support over the last several years.  Research Down Syndrome is proud to be a leading contributor to this effort.

Please help assure the continued progress of research such as this, and make a donation today!