Fraxa Research Foundation

Rating: 5 stars   34 reviews

Issues: Disabilities, Health, Philanthropy

Location: 10 Prince Place, Suite 203 Newburyport MA 01950 USA

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.
2014 Top-Rated Nonprofit
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EIN 04-3222167
9784621866
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Community Reviews

Rating: 5 stars  

1 person found this review helpful

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.

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

No changes but hope for more funding from any source.

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2014

 
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Rating: 5 stars  

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

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2013

 
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Rating: 5 stars  

1 person found this review helpful

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.

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

Nothing FRAXA Research is a well oiled machine

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

When was your last experience with this nonprofit?

2014

 
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1 previous review
Rating: 5 stars  

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

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

The organization is very well run & organized & above all trustworthy

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2007

 
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Rating: 5 stars  

1 person found this review helpful

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.

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

Advertise it in every State.

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2013

 
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Rating: 5 stars  

1 person found this review helpful

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!

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2013

 
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Rating: 5 stars  

1 person found this review helpful

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.

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

A lot

When was your last experience with this nonprofit?

2013

 
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