FRAXA Research Foundation

Rating: 5 stars   58 reviews


10 Prince Place, Suite 203 Newburyport MA 01950 USA


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.


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


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.

2016 Top-Rated Nonprofit
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Reviews for FRAXA Research Foundation

Role: Professional with expertise in this field
Rating: 5 stars  

1 person found this review helpful

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!

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1 previous review
Rating: 5 stars  

3 people found this review helpful

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.

If I had to make changes to this organization, I would...

try to raise FRAXA's awareness.

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Role: Professional with expertise in this field
Rating: 5 stars  

2 people found this review helpful

Wonderful charity run by incredibly dedicated people; they really are making a difference and getting things done! They have already gotten a lot of different treatments for fragile X into trials and they're doing all kinds of research on other possible treatments.

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Role: Professional with expertise in this field
Rating: 5 stars  

3 people found this review helpful

As a FRAXA staff member for the past year, I have seen first hand what a wonderful organization this truly is. Katie and Mike, both the founders of FRAXA and parents of a young man with Fragile X, have shown extraordinary compassion and gratitude towards the families and donors affiliated with FRAXA. We work diligently alongside our donors, and consider them to be members of our family here at FRAXA. I'm proud to be a member of the FRAXA team, and am looking forward to our continued progress!

How does this organization compare with others in the same sector?

Very Well

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