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Friday, November 11, 2011

21 Act Bills

Just heard about another item to contact your state reps about! It is called the 21 Act bills and encompasses 2 bills to make up the 21 Act package.

From the NDSS: Senators Sherrod Brown (D-OH) and Susan Collins (R-ME) introduced two Down syndrome bipartisan research bills. Read their statement here.

 These bills are the:
Trisomy 21 Research Centers of Excellence Act of 2011 (S. 1840)
Trisomy 21 Research Resource Act of 2011 (S. 1841)

Background Information on the Bills:
The 21 Research Resource Act will expand and intensify Down syndrome programs of the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC) to create an infrastructure of Down syndrome tools, including a Down syndrome contract registry, Down syndrome research database, and Down syndrome biobank.  These research resources will further strengthen the research being conducted on Down syndrome across the country and better equip our research community with the tools necessary to facilitate their research.  This bill also establishes a Down Syndrome Consortium with NIH to facilitate the exchange of information and make research efforts more efficient by integrating the perspectives of key stake holders.  This bill requires no additional funding from the government.

The 21 Research Centers Act will create at least six Down Syndrome Translational Research Centers of Excellence that provide an optimal venue and infrastructure for translational research on Down syndrome. The bill requires NIH to publish a research plan on Down syndrome, and update the plan every five years. This bill provides $6 million in annual funding to support the Centers of Excellence.

Follow this link to take action. So easy to just click on the email template and edit for your own personal information and then send it off to your state reps asking them to cosponsor these bills.

In other news ... remember the petition to make World Down Syndrome Day an official date on the UN calendar? It has passed!
"This afternoon, in the UN Headquarters in New York, during the plenary meeting of the Third Committee, the Brazilian proposal was read and adopted by consensus, with the co-sponsorship of over 80 countries." Yay for some recognition!

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