Last year, the National Institutes of Health (NIH) funded $46 million in Fragile X research, an amount that has trended upwards in the past few years. Over the years, they have funded hundreds of millions of dollars in research, thanks, in large part, to the advocacy efforts of NFXF Advocates.
Immediately following our NFXF Advocacy Day in March, the NIH is hosting an in-person meeting to discuss and revise the research priorities for Fragile X in the coming years. Our own Jayne Weber Dixon, along with several research and clinician partners, will be participating to give people with FX a voice.
Late last year, we conducted a Voices of the Person with Fragile X syndrome survey to gain insight into how FXS affects families on a daily basis. 462 families responded – what a tremendous response! We will be using this information in several ways, one of which is to help guide NIH’s research by participating in this planning session. So, thank you for those who participated.
If you didn’t participate, but would like to submit individual input to the NIH, you still can. Go to Request for Information (RFI): Future Directions in Research on Fragile X Syndrome and FMR1-Related Conditions by Friday March 2, 2018.
The NFXF is also working to get the input from the research and clinician community, and we are currently compiling input from members of our Scientific and Clinical Advisory Committee (SCAC) , the Fragile X Clinic and Research Consortium, and the International FXTAS Symposium members.
A comprehensive voice is vital to this process. Please add yours.
Additionally, on March 6, NFXF Advocates will also be asking their members of Congress to support language directing the NIH to support both basic science and translational research for Fragile X.
Working together, we are a strong voice for Fragile X families, giving them help today and hope for tomorrow.