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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 $23 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

9 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

1

General Member of the Public

Rating: 5

Fraxa has been a wonderful support to my family in learning of both of my nephews recent diagnosis of FragileX ... It was the first page that I went to for information and guidance and they have been nothing but supportive and professional to the common mission that we all share .. To find a cute for Fragilex ... Thank you

2

General Member of the Public

Rating: 5

This is a remarkable organization with remarkable leadership. For families that receive a diagnosis of Fragile X, there is an immediate and intense need for trustworthy support resources. FRAXA is there for thousands of such families. They are leaders in raising money to fund research for treatments and even a cure; their research dollars have moved science ever closer to achieving that goal. Katie and Mike are, quite simply, amazing.

2

General Member of the Public

Rating: 5

FRAXA is a well-run organization that was started by a couple whose children were diagnosed with Fragile X at a time when there were very few resources available for parents and when scientific research regarding the causes of the condition was in its infancy. With nothing but grit and determination, FRAXA is on the map at the highest levels of scientific research and thriving some two decades later. As day to day director, Katie Clapp is second to none in terms of responsiveness to fund raisers, doctors, experts and most of all parents and their children.

2

Volunteer

Rating: 5

FRAXA Research Foundation is the best! I have learned so much from the foundation.
FRAXA works diligently to raise funds for a cure & educate the public. The founders & volunteers are so dedicated to this great cause.

Previous Stories
1

General Member of the Public

Rating: 5

FRAXA Research Foundation really goes the extra mile to educate the public about Fragile X Syndrome. They have wonderful informational brochures, e-newsletters.

2 nansailor

General Member of the Public

Rating: 5

Watching the development, progress and accomplishments of this amazing organization has been very inspirational. Their efforts to involve the academic and research communities has been exceptional, bringing much progress. Their founders, parents of a Fragile X child, have accomplished a tremendous amount. Their support of families has meant a great deal to so many.

1 Darrel C.

General Member of the Public

Rating: 5

I believe FRAXA is fabulous. It's the one organization doing research that has the potential to really help my nephew Lucas lead a normal life

2

General Member of the Public

Rating: 5

My Partner's son, Our son, has Fragile X Syndrome and he is now 23. My Partner has worked with him since his birth and was told he would never be able to talk or walk and most likely would not make it to adulthood. They were wrong, he works part-time in and with the public successfully for 3 years, he also does contract work through the agency where he resides and has day services. He might not know how to read, or write, however, he is still successful and very happy. Never think that someone with Fragile X must be put in a home or given up on, that is not fair to them, or to you.

2

General Member of the Public

Rating: 5

Our family was devastated when my nephew, Lucas, was diagnosed with Fragile X. FRAXA was the organization that offered hope, support, understanding and an unwavering dedication to finding a cure. Since FRAXA volunteers are the parents and families of those precious children and young adults affected, the monies donated truly go to research.
It's amazing how many people, including doctors and others in the medical profession, have never heard of Fragile X! In order to help awareness my license plate is FXCURE. When curious minds ask what it means, I find that handing out the cards from FRAXA help people understand what it is and how prevalent it's becoming. Occasionally one will comment that they either have or know of someone who has Fragile X or autism. I even met a football Hall-of-Famer whose daughter in law actually is doing research for a university using FRAXA grants. She became involved when her son was diagnosed. We need FRAXA and FRAXA needs us!

2

General Member of the Public

Rating: 5

Our cousins have been involved with this organization as a result of their son's diagnosis with Fragile X and having nothing but wonderful things to say about all the great support it provides for research and promoting public awareness of Fragile X.