My research lives and dies by what the NIH says. If the NIH determines a subject to not be worthy of pursuing, that research will end. For several years I have been working, with a great team locally, to understand, diagnose and treat creatine deficiency disorders. I have submitted multiple grants to the NIH to do this. One grant was funded to make the animal model of the disease. Since that grant, no funding to study this disease has come from the NIH. We estimate that as many as 80,000 people in the USA have a creatine deficiency disorder, but the NIH does not know about them.
Currently the NIH’s child care institute is asking for your opinion on what it should pursue. Please tell them what diseases they should focus on. With the right information and right leadership we can help many of the 80,000 people with these disorders.
Please go here to see how and where to give your opinion: http://www.nichd.nih.gov/vision/index.cfm
If you want to be heard at the federal level as to what the NIH should study and what diseases or conditions to address – please let your voice be heard. Below is quoted from the press release.
“NICHD SEEKS COMMENT ON SCIENTIFIC VISION PAPERS.
This is the first step to chart NIH institute’s future research.
The leadership of the NICHD undertook its vision process to identify the most promising scientific opportunities of the next decade and to set an ambitious agenda that achieves critical scientific goals and meets pressing public health needs.
“We welcome the comments and suggestions of people from all walks of life-not just from the research community, but also from public health and community leaders, educators, practicing clinicians, and members of the general public,” said Alan E. Guttmacher, M.D., director of the NICHD. “The insights and creativity provided by multiple perspectives will no doubt help to advance the institute’s vitally important mission.”