Support Funding for People with Down Syndrome

Dear Camp PALS Family,

As some of you may know, Down Syndrome is the least funded genetic condition by the NIH yet it is the most frequent chromosomal disorder. Currently, the NIH has issued a “Request for Information” regarding a Down Syndrome registry, research database and biobank. They are expecting responses from the Down Syndrome community and anyone who is interested in supporting people with Down Syndrome. If they have a large and clear response, the NIH will be more likely to help fund this type of research. The deadline to respond is Friday, April 1.

Camp PALS is supporting the Global Down Syndrome Foundation in getting as many responses as possible to the NIH. Will you help us? You can cut and paste the text below and…
  • Send it as an email to: dsrdrfi@mail.nih.gov
  • Send a copy to: nihresponse@globaldownsyndrome.org
  • Subject line: “Response to NIH Down Syndrome Research Database & Biobank RFI”
Feel free to use the email below in its entirety or edit it as you see fit.

Thank you for joining us and the Down Syndrome community at large in this effort!

Jenni

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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 the 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 their assessment of what the parameters should be for our future centralized Down syndrome patient registry, database and bio bank.

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,
(your name)

Remember to send by April 1st!