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.
FRAXA and the Pierce Foundation are partners with Boston Children’s Hospital’s Fragile X Program and are pleased to help bring this important fragile X conference to the greater Boston community. Two FRAXA-supported researchers, Dr. Craig Erickson from Cincinnati Children’s Hospital and Dr. Carol Wilkinson from Boston Children’s Hospital will present their current work.
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.
Over 50 #FriendsofFRAXA showed up on the the day after Thanksgiving, November 24, at the Bruins game against the Pittsburgh Penguins to sell 50/50 raffle tickets. Our amazing volunteers sold $34,938 in tickets resulting in $17,469 donated to FRAXA research. This was the highest amount the Bruins sold this year in raffle tickets!
Co-Founder Kathy May Returns after Two Decades to Write Grants. It’s about discovering new forms of treatments to enhance the mental, emotional and social growth of those affected by fragile X. “And there will be a cure,” she said. “FRAXA is the reason for this hope. I have come full circle to FRAXA and feeling more hopeful than I have in many years.”
To recognize and honor the efforts of my delightful grandson James, who with undaunted spirit has met the challenges of living with Fragile X, I plan to run the 2017 New York City Marathon.
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.
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.