About FRAXA Research Foundation

FRAXA Tackles Bottlenecks, Accelerates Progress toward a Cure

FRAXA directly funds research at universities around the world. FRAXA also runs scientific meetings, advises pharmaceutical companies large and small, and presents at colleges, community settings, and international conferences. Families can reach out to FRAXA for resources, guidance, and an international community of support.

Fragile X research is drastically underfunded, considering its prevalence, prospects for a cure, and the promise this research holds for solving other disorders like autism, Alzheimer’s disease, and X-linked developmental disabilities.

In 1993, three new parents learned that their first-born sons had Fragile X syndrome.

Just a handful of scientists were studying Fragile X. There was no hope. The US government was spending only $30,000 per year to find treatments.

Katie Clapp, Michael Tranfaglia, MD, and Kathy May founded FRAXA Research Foundation in 1994 — a nonprofit, tax-exempt organization based in Newburyport, Mass. Committed to finding a cure for Fragile X, FRAXA has funded more than $33 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.

FRAXA Brochure


Key Media Coverage

  • USA Today
  • National Public Radio
  • Forbes
  • New York Times
  • Boston Globe
  • More

Fragile X treatment: Decades later, progress in rare genetic condition — by Karen Weintraub — July 11, 2021

Living with Fragile X Syndrome — video by Jessica Koscielniak — July 11, 2021

A Fragile X Treatment May Be On The Horizon — by Jon Hamilton — May 6, 2021

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

  • IRS FORM 990
  • IRS Letter of Determination

From our Scientific Advisors


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 continue to be, crucial to this critical mass of effort to find new options for people with lives touched by Fragile X.

Michael Snape, PhD Amo Pharmaceuticals
mark bear

It’s hard to overestimate the impact of FRAXA in advancing Fragile X research toward treatments. From the get-go they were unwilling to accept defeat.

Mark Bear, PhD, MIT fraxa.org/mark-bear

You Can Help

Since FRAXA was launched, the Fragile X field has grown tremendously. You can help us accomplish much more!

“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