From the National Down Syndrome Congress' Newsline

Bill Introduced To Establish Down Syndrome Centers of Excellence

On October 7, 2009 The Translational Research Parity Act of 2009 (S.1762) ("21 Act") was introduced in the Senate by Senator Sam Brownback (R.KS). Senator Sherrod Brown (D.OH) is also a co-sponsor. A companion bill,
H.R. 3656 was introduced in the House of Representatives by Cathy McMorris-Rogers (R.WA) along with Representatives Patrick Kennedy (D.RI) and Pete Sessions (R.TX).

This Act would:

• Create at least six Down Syndrome Translational Research Centers of Excellence that provide an infrastructure for patient-oriented research, and conduct basic, clinical, and translational research on Down syndrome;
• Establish a Down Syndrome Coordinating Committee to coordinate activities across the National Institutes of Health (NIH) and with other Federal health programs and activities;

Develop a National Down Syndrome Patient Registry and Biobank through agreements with the Centers for Disease Control and Prevention (CDC) to:

• Provide clinical care for patients with Down syndrome;
• Coordinate research and clinical activities through the Down Syndrome Translational Research Centers of Excellence with the activities of the National Down Syndrome Registry and Biobank; and,
• Create a common data entry and management system for Down syndrome patient data collection and analysis.

Members should call their Senators and House of Representatives member to request that they co-sponsor this important legislation.

Follow this link and input your zip code to get your state-specific information and a sample letter.

click here.