National Institutes of Health - Research Plan on Fragile X Syndrome and Associated Disorders

NIH Request for Feedback on Fragile X Research Plan

The NIH is updating a Research Plan for fragile X syndrome and the associated disorders of FXTAS (fragile X-associated tremor/ataxia syndrome) and FXPOI (fragile X-associated primary ovarian insufficiency) that was originally created in 2009 by experts convened by the them. FRAXA team members were part of these working groups, giving guidance on priority areas and most promising research directions and will be once again. The NIH is requesting input from families and other members of the fragile X community.

Impact of the Fragile X Community

At FRAXA Research Foundation, we are truly grateful for our fragile X community and thousands of donors. We couldn’t keep moving the ball forward in research without your support. Each year FRAXA invests over $1 million in fragile X research thanks to your support. Because we supported these three researchers, we were able to secure another $35 million in research aimed at identifying clinical trial outcome measures that will lead to human trials of promising treatments for those affected by fragile X.

$75,000 Raised for Fragile X Research by Friends of FRAXA at our Fall Fling

On Thursday, September 7 over 150 friends of FRAXA joined us at the Smith Barn at the Peabody Historical Society for the second annual FRAXA Fall Fling. Together we raised over $75,000 for fragile X research — including a hand-delivered check for $25,000! Families from as far away as Miami, Florida joined us, even with hurricane Irma approaching their home state. Unfortunately, Irma ambushed Weather Channel Storm Tracker and fragile X parent, Jim Cantore.

Fragile X Awareness Day Origins and a Tribute

July 22 is National Fragile X Awareness Day, but I’ll bet few know the history behind it.

In 2000, before there was such a thing as a Fragile X Advocacy Day, FRAXA Research Foundation and David Busby (husband to Mary Beth, father to two adult sons living with fragile X, a member of FRAXA’s pioneering leadership team, and a prominent and politically well-connected DC lawyer) were running fragile X advocacy in Washington, DC.