- Fragile X
- Get Involved
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 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.
Boston Globe — Playing a Part in Finding a Cure — May 2015 by Kevin Paul Dupont
New York Times — April 2010 by Gardiner Harris
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!
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
As the parent of a Fragile X young man, I know that my contribution to FRAXA makes a difference. Why? Because contributions fund research grants, not administrative costs. Medical, genetic, and pharmaceutical researchers around the world are working toward a cure. My son will be 26 years old in 2 days. Go FRAXA! You are doing the impossible, and everyday we thank you for the cure that is coming.
FRAXA is the hope for all those affected with Fragile X and their families. The organization is singularly focused on funding research to cure Fragile X. It is very efficient in terms of using donor funds in putting it towards research — a cut above most other organizations funding medical research. The organization has a spectacular record in funding most promising avenues towards a cure. FRAXA is the hope — and promise — of a Fragile X cure.
I’ve personally been involved with FRAXA for nearly 10 years, including 4 as a Board Member. Having seen both the internal and external workings of this organization, I can wholeheartedly say that FRAXA puts nearly every penny of donations to work to find treatments and a cure for Fragile X. The staff is committed to the cause and the donors are acutely aware that their funds are put to excellent use.