RDS Runners Participate in Disney Race Weekend

RDS Runners, the charity race program supporting Down syndrome research, will be entering teams in the races associated with the Walt Disney World Marathon Weekend, January 10-13. 

NICHD Invites Comments on the Ds Research Plan

The National Institute of Child Health and Human Development (NICHD) Issues Request for Information (RFI): Invitation to Comment on the Down Syndrome Research Plan Released in 2007

Third Annual RDS Golf Classic in Dallas Another Great Success

The 3rd Annual Research Down Syndrome Charity Golf Classic and Texas Twilight cocktail reception, organized by Patty and Paul Watson, raised more than $120,000 to support RDS and Down syndrome cognitive research. With support from more than 50 volunteers, the Watsons hosted the event in May at the Bridlewood Golf Club in Flower Mound and the Austin Ranch in Grapevine.

RDS is grateful for the leadership that Paul and Patty provide in specifically supporting research directed towards treating learning difficulties in Down syndrome. They have continued to back their message that it is “our generation’s turn to lead the next advances in Down syndrome by supporting the promise of research to develop drug therapies.” RDS extends our sincerest thanks to the Watsons for their support and belief in the mission of RDS.

Inaugural Fundraiser in South Bend Supports RDS

The Compton Family Ice Arena on the campus of the University of Notre Dame was the setting on May 11 for A Night of Art and Blues, which featured a blues band, refreshments and a silent auction of art and other items. Much of the art auctioned on this evening was created by local and national artists with Down syndrome. What a forum to display the remarkable talents of these artists!

The event, planned by Mike Mannor and Rob Kelly, with assistance from a host of volunteers and the Down Syndrome Family Support and Advocacy Group of Michiana, was a tremendous success.

RDS thanks the event organizers and volunteers for their efforts.

Down Syndrome Research Consortium Meets at NIH

RDS President Bob Schoen attended the meeting of the Down Syndrome Research Consortium in Maryland on July 23. Members of the consortium, which represents the NIH, clinical researchers, Ds advocacy and research foundations and self-advocates, discussed the status of the contact registry development project. It was disclosed at the meeting that National Institute of Child Health and Human Development(NICHD) was able to secure $250,000 in funding to develop this web based national registry. This registry will be a site to collect basic health information on potential participants in Down syndrome related clinical trials. Keep an eye out for our next newsletter which will provide more details, including timing of this project.

The consortium also discussed that, as recogniezed by NICHD, the Down Syndrome Research Plan released in 2007 is now in need of evaluation and updating.  As part of this process, NICHD and the Trans-NIH Down Syndrome Working Group will be requesting comment from the public concerning the effectiveness of the Plan, its accomplishments, and its remaining gaps, and will welcome suggestions concerning new future research objectives.

RDS participated in the Down Syndrome Research Consortium held in July. Members of the consortium, who represent the NIH, clinical researchers, Ds advocacy and research foundations and self-advocates, discussed the status of the contact registry project. It was disclosed at the meeting that the National Institute of Child Health and Human Development(NICHD) was able to secure $250,000 in funding to develop this web based national registry. This registry will be a site to collect basic health information on potential participants in Down syndrome related clinical trials. Keep an eye out for our next newsletter which will provide more details, including the timing for this project.

The consortium also discussed that, as recognized by NICHD, the Down Syndrome Research Plan released in 2007 is now in need of evaluation and updating.  As part of this process, NICHD and the Trans-NIH Down Syndrome Working Group will be requesting comment from the public concerning the effectiveness of the Plan, its accomplishments, and its remaining gaps, and will welcome suggestions concerning new future research objectives. 

University of Arizona Recognizes Contributions of RDS

RDS grants support the research of Drs. Jamie Edgin and Lynn Nadel at The University of Arizona, who, along with their collaborators, developed the Arizona Cognitive Test Battery(ACTB), a tool to assess cognitive function in individuals with Down syndrome. In fact, the group is engaged in numerous studies exploring the various scientific aspects of Down syndrome as well as how to improve quality of life for those who have it. An example of this research are their studies on sleep and sleep apnea. Sleep deficit has been connected with behavioral and cognitive difficulties in persons with Down syndrome. A recent UA News article highlighted this group