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. Even though he wasn’t there in person, Jim sent the Weather Channel jacket he wore while covering hurricane Harvey. It was a wildly popular auction item!
After cocktails and some rousing music by the Prescott Street Jazz Band, our Master or Ceremonies, TV personality and multimedia journalist Janet Wu, kicked off the evening.
The keynote speaker was FRAXA grantee and Harvard professor, Jeannie Lee, MD, PhD, who gave an update on her efforts to develop treatments that reactivate the Fragile X gene. She noted that there are patients in Europe who have unusual Fragile X mutations and produce about 15% of normal levels of the Fragile X protein, FMRP. These individuals function within the normal range, so many experts consider this level of 15% expression to be a kind of “magic number.” Over the past year of their FRAXA grant, Dr. Lee and colleagues have found some drugs that can restore expression to 20 or 30% of normal levels, at least in a lab dish.
Preston Hall, a young man with Fragile X syndrome, was proud to present the FRAXA Champion Award to his friend Bob Sweeney, Executive Director of the Boston Bruins Foundation. The Bruins Foundation has been a longtime supporter of FRAXA Research Foundation.
On Friday, November 24, when the Bruins play the Pittsburgh Penguins in Boston, FRAXA will be the featured charity recipient of a 50/50 raffle. Volunteers are needed so please email Dave Bjork at firstname.lastname@example.org if you’d like to join us!
We thank the many friends of FRAXA for making this event a big success, especially the families Vega, Eddy, Truscott, Ford, Zorovic, Casey, Mazzola, Vershbow, Welch, Wolfson, Pierce, and Hollin. We are immensely grateful to our corporate sponsors: Fulcrum Therapeutics, Ovid Therapeutics, Q-State Biosciences, Shire Pharmaceuticals, Boston Children’s Hospital and SPARK for Autism. As we’ve noted before, Fulcrum, Ovid, and Q-State are all working to develop new treatments for Fragile X.
Thank you to everyone who supported this effort: you’ve helped to raise another $75,000 for Fragile X research!