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CALL/EMAIL YOUR MEMBERS OF CONGRESS TO COSPONSOR THE "21 ACT" Action Alert - Click Here to Help Dear NDSS Advocates: Senators Brownback (R-KS) and Sherrod Brown (D-OH) and Representatives Cathy McMorris Rodgers (R-WA), Patrick Kennedy (D-RI), and Pete Sessions (R-TX) introduced the Trisomy 21 Translational Research Parity Act of 2009 (S. 1762/H. 3656) or the "21 Act." The 21 Act (S. 1762/H. 3656) is aimed at expanding, intensifying and coordinating Down syndrome translational research across the National Institutes of Health (NIH), the Centers for Disease Control and Prevention (CDC) and other Federal agencies. Specifically, this legislation would:
• Create at least six Down Syndrome Translational Research Centers of Excellence that provide an optimal venue and 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 relating to Down syndrome. • Develop a National Down Syndrome Patient Registry and Biobank, through cooperative agreements at the Centers for Disease Control and Prevention (CDC), to: o Provide clinical care for patients with Down syndrome; o 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 o Create a common data entry and management system for Down syndrome patient data collection and analysis.. ACTION NEEDED: It is very important for us to identify more cosponsors for the legislation. Please take a few minutes to call or write your Senators and Representative today to ask them to cosponsor 21 Act! You can reach your Representative by calling the Capitol Switchboard at 202-224-3121. If you don't know who your Representative is, go to www.congress.org and enter your zip code in the upper right corner. We have included both a script and email/letter template click here to help you reach out to these offices. Please do not hesitate to contact me or Sara Weir ( This e-mail address is being protected from spambots. You need JavaScript enabled to view it /202-312-7475) with any questions.
Regards,
Madeleine Will Director of the Policy Center National Down Syndrome Society
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