FRAXA background

FRAXA’s mission is to find a cure

We accelerate progress toward effective treatments and ultimately a cure for Fragile X, by directly funding the most promising research

Along with direct research funding, FRAXA runs scientific meetings, advises pharmaceutical companies large and small, 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.

FRAXA: a Grass Roots Organization

FRAXA was founded in 1994 by three parents of children with Fragile X to support scientific research aimed at finding a treatment and a cure for Fragile X syndrome. At that time, there was no Fragile X website or listserv, and only a handful of scientists were studying Fragile X. Funding by the U.S. government for this disease was under $2 million per year, and only $30,000 of that was devoted to treatment studies. As parents, we had to change that.

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.

Key Media Coverage

Boston Globe — Playing a Part in Finding a Cure — May 2015 by Kevin Paul Dupont

NPR – December 12, 2014 and NPR – September 20, 2012 — by Jon Hamilton

New York Times — April 2010 by Gardiner Harris

FRAXA brochure to download and print

FRAXA brochure to download and print





Audited Financial Statements (pdf)

> 2014     > 2013     > 2012     > 2011

Form 990 (pdf)

> 2014     > 2013

How We Work

FRAXA funds grants and fellowships at universities all over the world. We have funded more than $24 million dollars in top-notch science. FRAXA's management expenses have always been less than 4% of income, as we have just one full-time staff, three part time staff, and hundreds of volunteer parents. 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!

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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
Jim Cantore at Boston FRAXA Gala
FRAXA Board members all have children with Fragile X. Click on the image to meet them.
Meet Jim Cantore and the rest of FRAXA's Honorary Board. Click on the image...
Meet our Scientific Advisors, including 3 Nobel Laureates. Click to learn more...