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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

58 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 Lisa266

Professional with expertise in this field

Rating: 5

I have family members that have Fragile X and FRAXA has been an outstanding resource and source of support for up to date information on the latest happenings in research and fundraising efforts.
It's incredible & reassuring to see what FRAXA is able to accomplish with minimal operating expense and a LEAN, no-frills team.
The news alerts/newsletters are always encouraging as they advise of the latest breakthroughs in research and trials which are so essential in finding a cure.
Reading about the various fundraising efforts across the world gives ideas about how even a little effort can make a difference.
FRAXA should serve as a role model for how to run a lean, efficient and effective organization!

Previous Stories
3

Donor

Rating: 5

FRAXA has been a part of our family since my niece and nephew were diagnosed with Fragile X. It's a very lean organization which lets me know my donations are going far to help find a cure for Fragile X. The communication from Katie and board members has been clear, constant and informative. I feel so confident that my niece and nephew and our entire family are in good hands with the funds that are directed to research. Everyone involved with FRAXA that I have met at various fund-raisers through the years is passionate about finding a cure for Fragile X and having this as a top priority unites FRAXA and keeps it focused on this goal.

1

Donor

Rating: 5

FRAXA is an amazing organization dedicated to bringing awareness to Fragile X and finding a cure. They have been a great support system for my dear friends who's two boys have recently been diagnosed. I truly believe they have helped them get through a very difficult time and provide hope for all families effected by Fragile X. Keep it up the good work!

2

Client Served

Rating: 5

Our daughter, who is now 19, was diagnosed at 2 which is when we were introduced to this remarkable organization. We have been blessed by the support of FRAXA, led by Katie Clapp and Michael Tranfaglia. FRAXA's mission is single focused on finding a cure for FragileX. I know they will find a cure in the not to distant future.

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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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

Volunteer

Rating: 5

Fraxa Research was where we turned when we learned our three-month-old daughter had Fragile X Syndrome. Katie Clapp not only offered wise advice, and tons of support, but she shared with me the kinds of research Fraxa was funding, research that would help the many families struggling with this diagnosis. Thank you Katie for making a difference in the lives of so many. Leslie M.

3 Sally N.

Donor

Rating: 5

FRAXA has played such an important role in our lives since our son was diagnosed in 1997. Early on, there was no facebook, but FRAXA through a listserv (which still exists today) provided our family with the opportunity to network with numerous families impacted by fragile X syndrome (FXS). Not only have we followed the research supported by FRAXA we’ve actually participated in numerous research studies. FRAXA’s research teams give me hope for not only a better tomorrow for my son but for many individuals and not just limited to those with FXS.

3

Volunteer

Rating: 5

As a parent of a 15-year-old son with Fragile X Syndrome, I desperately want a cure. FRAXA is the only organization in the world solely focused on finding a cure for fragile X. According to its web site, FRAXA is one of the most efficient charities in the world where 93 cents of every dollar is spent on research. That's where I want my money to go — to find a cure and not for administrative costs or for education, advocacy or support. FRAXA is investing more than $1 million in translational research in 2016 and has invested more than $25 million since its inception. Keep doing what you are doing, FRAXA. Find a cure. Today.

4

Donor

Rating: 5

After both of our sons were diagnosed with Fragile X Syndrome, we were devastated. Unsure where to turn or how to get involved in the FX community, we asked our sons doctors where they recommended we donate funds to. They said that FRAXA was where we should donate if we wanted our money to go towards finding a cure. The fact that FRAXA was the first place they suggested was a great endorsement from our medical team.

As soon as we contacted FRAXA, we were greeted so warmly by Katie and Mike, the co-founders of the organization. They were so kind to correspond via email and eventually over the phone and in person! They have been such an amazing support system for us and have given us excellent guidance and perspective. We will continue to support FRAXA in any way that we can. We truly believe in them!

4

Donor

Rating: 5

FRAXA was such a great organization to learn about as we discovered our two boys have fragile X syndrome. Within days, FRAXA reached out to us and within weeks we had met with them in person. The education and support they gave to us is something I will never forget. Given the work they do, they have become a beacon of hope for our family that a cure can be found. Their enthusiasm, compassion and dedication are contagious and are focused on a very clear goal and that is finding a cure for Fragile X Syndrome. FRAXA is a model organization for all to follow.