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. So they founded FRAXA Research Foundation.
FRAXA accelerates progress toward treatments and ultimately a cure for Fragile X syndrome.
FRAXA funds grants and fellowships at universities all over the world. We have funded more than $25 million dollars in top-notch science. Three Nobel Laureates sit on our volunteer Scientific Advisory Board.
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 and receive materials, resources, guidance, referrals, and an international community of support.
Fragile X research is still 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 founded, the Fragile X field has grown tremendously, due in large part to our grass-roots efforts. You can help us accomplish much more!
FRAXA Research Foundation
10 Prince Place, Suite 203
Newburyport, MA 01950
501c3 nonprofit organization
IRS TaxID: 04-3222167
Melissa Budek, Events Manager
Marna Badavas, Member Services
Katie Clapp, Executive Director
Michael Tranfaglia, Medical Director
FRAXA Archives: Annual Reports & Newsletters
From our scientific advisors
There is no greater thrill than the realization that one’s basic research might, in the foreseeable future, provide new therapies — and possibly a cure — for Fragile X.
Studies of Fragile X have been galvanized by those most directly affected …
experience shows that dedicated, resourceful, and, above all, motivated organizations like FRAXA sometimes do hold the key to cracking these diseases.