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. Solely 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 accelerates progress toward treatments and ultimately a cure for Fragile X syndrome.

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 brochure
FRAXA brochure to download and print


From our Scientific Advisors

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Mark Bear, PhD
Mark Bear, PhD MIT
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.
Learn about our research. How close are we to finding treatments?
James Watson, PhD Nobel Laureate
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.
Mike Snape, PhD, Neuren Pharmaceuticals
Mike Snape, PhD AMO Pharma
Now there is an industry-wide pipeline of programs in development across many companies. It is a simple truth that without FRAXA, this would not be the case. The initiatives FRAXA has in place have been, and continues to be, crucial to this critical mass of effort to find new options for people with lives touched by Fragile X Syndrome.

"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

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!

Audited Financial Statements

2014      2013      2012      2011

IRS Form 990

2014      2013

IRS 501c3 letter of determination

FRAXA Archives: Annual Reports & Newsletters

2010     2009     2008     2007     2006     2005     2004     2003    2002     2001     2000     1999     1998

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


Direct emails

Melissa Budek, Events Manager

Marna Badavas, Member Services

Katie Clapp, Executive Director

Michael Tranfaglia, Medical Director

General email: