DSRTF Piece - 30 Minutes if you love someone with Down syndrome

DSRTF piece

If you love someone with Down syndrome, at any age, you need to watch this 30 minute interview with Dr. Bill Mobley to find out what's on the horizon with Down syndrome research. Your loved one's life could change significantly in the next few years.  Remember to STOP the media player below so the music doesn't interfere...

TAKE ACTION! CALL/EMAIL YOUR MEMBERS OF CONGRESS TO COSPONSOR THE "21 ACT" PACKAGE

CALL/EMAIL YOUR MEMBERS OF CONGRESS TO COSPONSOR THE "21 ACT" PACKAGE

Take Action!


Today, Representatives and Congressional Down Syndrome Caucus Co-Chairs, Cathy McMorris Rodgers (R-WA), Chris Van Hollen (D-MD) and Pete Sessions (R-TX),introduced the Trisomy 21 Act of 2011 or “21 Acts” package (HR 2695 and HR 2696). The 21 Act package includes two important pieces of legislation, the Trisomy 21 Research Resource Act of 2011 (HR 2696) and Trisomy 21 Research Centers of Excellence Act of 2011 (HR 2695).

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.

The 21 Research Centers Act will create at least six Down Syndrome Translational Research Centers of Excellence that provide an optimal venue and infrastructure 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 to support the Centers of Excellence.

FOR MORE INFORMATION
http://www.ndss.org/index.php?option=com_content&view=article&id=262&Itemid=143&limitstart=4


ACTION NEEDED

Please take a few minutes to call or email your Representative today to ask them to cosponsor 21 Act package! You can reach your Representative by calling the Capitol Switchboard at 202-224-3121. We have included both a script (below) and email/letter template to help you reach out to these offices. Please do not hesitate to contact me or Sara Weir (sweir@ndss.org) with any questions.

Regards,

Madeleine Will, Director of the Policy Center

21 Act Package - Script/Talking Points to Call Your Representative


ADVOCATE:


Hi, my name is __________. I’m a constituent from ____ (home town) ____. May I please speak to the Congressman/Congresswoman’s Legislative Assistant who handles healthcare and/or disability issues?


CONGRESSIONAL OFFICE:

Let me see if XXXX is available. May I ask what you are calling about?

ADVOCATE:

Sure, I’m an individual/parent of a child/adult with Down syndrome. I would like to discuss a bill, the 21 Act package (HR 2695/HR. 2696) that is very important to our family.

CONGRESSIONAL OFFICE HEALTHCARE / DISABILITY LEGISLATIVE ASSISTANT:

Hi, this is XXXX, how can I help you?

ADVOCATE:

Hi, this is ___ (your name) __ from ___ (home town) ____. I’m an individual/parent of a child/adult with Down syndrome. I would like to discuss two important bills that make up the 21 Act package (HR 2695/HR. 2696. I am calling to ask my Representative to cosponsor this bill led by Representatives McMorris Rodgers (R-WA), Sessions (R-TX), and Van Hollen (D-MD).

The first bill, the 21 Research Resource Act, will expand and intensify Down syndrome programs of the National Institutes of Health and the Centers for Disease Control and Prevention 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.

The second bill, the 21 Research Centers Act, will create at least six Down Syndrome Translational Research Centers of Excellence that provide an optimal venue and infrastructure 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 also provides funding to support the Centers of Excellence.

CONGRESSIONAL OFFICE HEALTHCARE / DISABILITY LEGISLATIVE ASSISTANT:

I will let my boss know that we talked and make sure that he/she takes a look at the bill.

(Note: When you talk to the legislative staff, you are likely to get the response.)

ADVOCATE:

If your boss is interested in signing on as a cosponsor, you may contact:
Kim Betz (kimberly.betz@mail.house.gov or 202-225-2006) in Representative McMorris Rodgers' office.

Thank you for your time. I hope your boss will consider cosponsoring this important package of legislation. May I get your email so that I can follow up with you on this issue? Thanks very much!




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