Monday, March 28, 2011

The National Institute of Health wants to know if you want Down syndrome research funding

The NIH has decided to gather info (Request for Information or RFI) regarding an interest in Ds research, data base and bio bank.  They want to receive responses by April 1, 2011, in order to decide if there is enough interest to move in that direction.  We feel this is clearly a move in the right direction and would love for you to send your email of support.  You can write your own or simply modify the wording in the first sentence....As a friend(uncle, relative, etc) of a child with Down syndrome who has five siblings, .....  

FYI, the majority of individuals with Ds start with Alzheimer-like symptoms in their 40s.  This will dramatically impact the entire family and there is currently a human clinical trial being conducted on just this topic.  Of course the majority of funding is through private donations, so to have the support of NIH in funding Ds research more fairly (currently Ds is the most common genetic chromosomal abnormality, yet it is funded by far the lowest) hopefully more breakthroughs will be found to improve cognition and delay the later loss.

 If you do write an email please send to: and cc:   with subject:  RESPONSE TO NIH DOWN SYNDROME RESEARCH DATABASE & BIOBANK RFI

Please pass along to anyone else who may be willing to send an email. 

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