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Nonprofit Overview

Causes: Autism, Brain Disorders Research, Disabilities, Health, Philanthropy, Philanthropy, Voluntarism & Grantmaking Foundations, Specifically Named Diseases Research

Mission: FRAXA was founded in 1994 by three parents of children with Fragile X. Our mission is to accelerate research aimed at finding effective treatments and a cure for Fragile X and related disorders, by directly funding grants and fellowships at top universities around the world.

Results: We have funded $26 Million in targeted research and are on the verge of bringing a treatment for Fragile X - and perhaps also autism - to patients.

Target demographics: find effective treatments and ultimately a cure for all children and adults who have Fragile X syndrome

Direct beneficiaries per year: 20 research teams to find new treatments for Fragile X; half of them have now gone on to receive large grants from the National Institutes of Health.

Geographic areas served: the U.S., Canada, Europe, South America, and Australia

Programs: 1) Research grants and fellowships to fund research on Fragile X Syndrome, autism, and related disorders at universities around the world. 2) The FRAXA drug validation initiative (FRAXA-DVI), where we can provide preclinical testing of potential new medications for Fragile X; we have provided this service to a dozen pharmaceutical companies and now several of them are conducting clinical trials.

Community Stories

7 Stories from Volunteers, Donors & Supporters

7

Donor

Rating: 5

FRAXA is a truly remarkable organization with only one goal in their mission statement: to find a cure for the genetic disorder, Fragile X. Presented with a zero public recognition factor on day one, the dedicated founders and staff at FRAXA have moved the Fragile X conversation forward. America can boast a National Fragile X Recognition Day due to this group. 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.

Comments ( 1 )

kclapp Hi, I am FRAXA's president and co-founder, and I would LOVE to quote your review in a letter to FRAXA supporters. Could we include it and include your name (first name and last initial is fine if you like)? You can let me know here or at kclapp@fraxa.org thank you!!! Katie

2 Dean C

Board Member

Rating: 5

I defy anyone to find a nonprofit this focused on finding a cure for Fragile X Syndrome, and hopefully Autism too! FRAXA is deeply rooted in funding research that is going to someday get this job done.

Previous Stories
3

Board Member

Rating: 5

FRAXA continues to be the one and only organization I see moving the ball towards a cure for Fragile X Syndrome. Please join FRAXA in their quest for a cure!

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debbie stevenson

Board Member

Rating: 5

FRAXA Research Foundation has a clear mission to find treatments and ultimately a cure for Fragile X. Fragile X is similar to autism and in many cases it's a very debilitating mental disorder. Finding medications that could lessen the effects for a person struggling with Fragile X could dramatically impact quality of life. FRAXA not only funds the best research worldwide, but also acts as an intermediary between pharmaceutical companies, government agencies, researchers and families in an to advance this work. FRAXA does all of this with a very limited staff and on a shoestring budget, by very frugally spending money raised and by utilizing volunteers to fundraise and pitch in when possible. Few organizations do as much with as little as FRAXA Research Foundation. The brain research FRAXA funds will likely give us much greater insight into many other disorders including autism, Parkinson's, and Alzheimer's. Finding medications to treat mental impairment is the future and FRAXA is at the forefront of this work.

Previous Stories
2

Volunteer

Rating: 5

FRAXA is the future for our children. The research FRAXA is funding to find treatments for Fragile X is the future for our children. The medications that will be developed will be key for helping our children to live as happily and as independently as possible. And FRAXA funds and facilitates a tremendous amount of excellent research on a very small budget.

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2

Board Member

Rating: 5

FRAXA has been on the forefront of research to find a cure for Fragile X for over a decade at this point. The organization's dedication to funding the most promising research and focus on what is likely to yield results near term has brought a cure within reach. In addition, FRAXA has been very careful with donors' funds, spending very little on ongoing operations and passing on the vast majority of the donations to funding research.

2 Michael S.

Board Member

Rating: 5

I've personally been involved with FRAXA for nearly 10 years, with the last 4 as a Board Member. Having seen both the internal and external workings of this organization, I can whole-heartedly say that FRAXA put 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.

Review from CharityNavigator

2

Board Member

Rating: 5

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 medial research. The organization is able to sollicit excellent research proposals from research community and has a spectacular record in funding most promising avenues towards a cure. It is examplary in its collaboration with parents and families of those affected by Fragile X, researchers and the scientific community, pharma companies. FRAXA is the hope--and promise--of a Fragile X cure.

Review from CharityNavigator