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 brochure
FRAXA brochure to download and print


Audited Financial Statements

2014      2013      2012      2011

Tax Form 990

2014      2013

IRS 501c3 letter of determination

Contact Info

FRAXA Research Foundation
10 Prince Place, Suite 203
Newburyport, MA 01950

Phone: 978-462-1866

501c3 nonprofit organization
IRS TaxID: 04-3222167

Melissa Budek, Events Manager

Marna Badavas, Member Services

Katie Clapp, Executive Director

Michael Tranfaglia, Medical Director


"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

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

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 D. Watson 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.