Monday, March 28, 2011

Support for Down Syndrome to the NIH

I received an email from the DSRTF (Down Syndrome Research and Treatment Foundation) today.
Dear Friends,

We are writing with an urgent request for your support for something that is of the utmost importance to us and anybody who cares about people with Down syndrome. We do this in concert with the many other Down syndrome organizations that have been at the forefront of efforts to mobilize the Down syndrome community to voice their support for this critical initiative.

The National Institutes of Health (NIH) has requested feedback on the creation of a centralized Down syndrome patient registry, database and biobank. They are expecting responses from the Down syndrome community and from anyone who is interested in supporting people with Down syndrome. The Down Syndrome Research and Treatment Foundation and the researchers we fund support these critical elements of Down syndrome research, and we would like you to join the broader campaign to maximize the volume of responses delivered to the NIH. If you have not yet done so, we would like for you to draft an email of support (more details below) or sign our online petition prior to the deadline of Friday, April 1.

Thank you in advance for helping to assure Down syndrome research receives a fair share of research dollars that will help people with Down syndrome live healthier and more productive lives.

Chris Rose
Executive Director
Down Syndrome Research and Treatment Foundation

To help in this effort, you can do either of the following:
1. By April 1 (NIH deadline), e-mail your conclusions and recommendations about a Down syndrome patient registry, research database and biobank using the draft email (below) to: Please cc: so we can keep track of the responses.
2. Sign our online petition, which is available here:

I support this cohesive effort to help increase federal funding for Down syndrome. So, I wrote this letter (customizing the example provided by the DSRTF):
To Whom It May Concern:

As a mom of a 3-year old boy with Down syndrome, who brings absolute joy and inspiration into my life and all the lives he has touched, I strongly support the development of a formal Down syndrome contact registry, research database and biobank/tissue repository.

I am pleased that there have been a number of substantive meetings between leading Down syndrome organizations and the NIH to assist with the preliminary planning of such registries. Those organizations speak in the best interest of individuals with Down syndrome and their families and have determined how important it is to to establish a Down syndrome contact registry, research database and biobank/tissue repository. I encourage you to consider their recommendations.

I appreciate the NIH’s renewed interest in Down syndrome research and urge you to fund this essential component for long-term improvement of the lives of people with Down syndrome. People with Down syndrome deserve it.


Your turn.