In 1993, three new parents learned that their first-born sons had Fragile X syndrome. At that time, there was no Fragile X website or Facebook group, and only a handful of scientists were studying Fragile X. There was no hope. The US government was spending just $30,000 per year to find a cure! As parents, we had to change that.
Founded in 1994, FRAXA is a nonprofit, tax-exempt organization based in Newburyport, Mass. Committed to finding a cure for fragile X, FRAXA has funded more than $25 million in biomedical research, yielding discoveries that are changing the lives of families coping with fragile X. FRAXA is one of the most efficient and effective charities in the world, with management and general expenses under 4 percent and research expenditures at 86 percent. Three Nobel Laureates sit on our volunteer Scientific Advisory Board.
FRAXA tackles bottlenecks to accelerates progress
Along with funding research, FRAXA runs scientific meetings, advises pharmaceutical companies large and small, and provides education on college campuses, community settings, and international conferences. Families can reach out to FRAXA for resources, guidance, referrals, and an international community of support.
Fragile X research is drastically underfunded, considering its high prevalence, prospects for a cure, and the promise that this research holds for advancing understanding of other disorders like autism, Alzheimer’s disease, and X-linked developmental disabilities.
Since FRAXA was launched, the Fragile X field has grown tremendously. You can help us accomplish much more!
IRS Form 990: 2015 2014 2013 501c3 letter of determination
Key Media Coverage
New York Times — November 2016 — Medical Charities Once Advised on Coping With a Disease. Now They Try to Cure It — by Gardiner Harris
Boston Globe — May 2015 — Playing a Part in Finding a Cure — by Kevin Paul Dupont
"Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has."
- - - Margaret Mead