March 22, 2011

NIH - Down Syndrome Registry

Dear friends and colleagues,

We are writing this urgent e-mail to ask for your help!

The National Institutes of Health (NIH) is the largest government funding organization for research.  The NIH has issued a “Request for Information” regarding a national Down syndrome registry, research database and biobank.  They are expecting responses from the Down syndrome community and from anyone who is interested in supporting people with Down syndrome.  Every e-mail counts!  

If we have a large and clear response the NIH will be more likely to help us fund a Down syndrome registry, research database and biobank.   The deadline to respond is Friday, April 1.  Please help us!!

For those of you who are pressed for time, please click on our recommendations to NIH.  If you agree with our recommendations you can easily cut and paste the message below and follow the instructions or you can use any part of the message to create your own.

     E-mail your conclusions and recommendations about a Down syndrome patient registry, research database and biobank to dsrdrfi@mail.nih.gov by April 1st
     Please cc: us at nihresponse@globaldownsyndrome.org so we can keep track of the responses
     You can use the Subject header: “RESPONSE TO NIH DOWN SYNDROME RESEARCH DATABASE & BIOBANK RFI”
     Example of a letter of support:

To Whom It May Concern:
It is morally, economically and scientifically important that the National Institutes of Health increase funding for people with  Down syndrome.  We are pleased that the Linda Crnic Institute for Down Syndrome and the Global Down Syndrome Foundation have taken the lead with the NIH in this regard.  We support and agree with the Linda Crnic Institute’s assessment of what the parameters should be for our future centralized Down syndrome patient registry, database and biobank.  Please continue to work towards this end.  We appreciate NIH’s renewed interest in Down syndrome research and we appreciate NIH addressing the historical and alarming disparity of funding for research that would improve the lives of people with Down syndrome.

Sincerely,
(name)

For those of you who would like to learn more, we invite you to attend one of our webinars.  Please follow the appropriate link to sign up:


Down syndrome is the least funded genetic condition by the NIH yet it is the most frequent chromosomal disorder.  Please help us get our fair share of research dollars that will help people with Down syndrome live healthier and more productive lives.

Gratefully,
Michelle Sie Whitten
Executive Director, Global Down Syndrome Foundation
(Mom to  Sophia Kay Whitten who happens to have Down syndrome)

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