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  

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.

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Rating: 5 stars  

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.

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

Dramatically increase the dollar amount of contributions coming in since so much of the brain research FRAXA is funding to find treatments for Fragile X will help other brain disorders as well.

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

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

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1 previous review
Rating: 5 stars  

1 person found this review helpful

FRAXA began in 1994 with a dream of curing Fragile X -- now fast forward to 2011 -- there are currently clinical trials for medications to treat the core deficits of Fragile X going on in several centers around the country. Moonshot to the mind is the next frontier in medical research. Being a single gene disorder makes Fragile X a great model for other disorders of the brain as well, and could ultimately lead researchers to treatments for possibly autism, Parkinson's and Alzheimer's. FRAXA is an extremely efficient organization, and the people who are involved with FRAXA are totally committed to this cause. If you want your charitable dollars to really make a difference in the world, make a donation to FRAXA. My son is 14 years old and has Fragile X, and FRAXA gives me great hope that there will be medications in his lifetime that allow him to be happy and self-sufficient.

I've personally experienced the results of this organization in...

I hope to get my son involved in some of the clinical trials currently or soon to take place so we can see first hand the benefits of the drugs FRAXA has been nurturing along for years now. FRAXA is gaining recognition as the model for a cure-oriented charitable foundation.

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

Much work still needs to be done. Just like AID's, treating Fragile X will mean a cocktail of medications. The brain is very complicated so the basic research continues for the next components of the cocktail. Funding and great research will help FRAXA reach it's goal.

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Rating: 5 stars  

1 person found this review helpful

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!

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

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

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2014

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1 previous review
Rating: 5 stars  

1 person found this review helpful

There is no organization doing more independently towards researching a cure for Fragile-X Syndrome than FRAXA. Knowing that 96% of my donations go directly towards research is amazing.

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

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

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2013

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Rating: 5 stars  

1 person found this review helpful

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.

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

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

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2013

Was this review helpful? 
Rating: 5 stars  

1 person found this review helpful

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.

I've personally experienced the results of this organization in...

seeing the quality and quantity of research gains and how this delivers on their mission for their constituents.

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

Expand the publicity and awareness of their work.

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Review from CharityNavigator
Rating: 5 stars  

1 person found this review helpful

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.

I've personally experienced the results of this organization in...

Minocycline has been the first breakthrough for Fragile X that was a result of FRAXA fudning. In addition, the research FRAXA sponsored has now brought us to two drugs being in late Phase II/Phase III trials--with a hope of a disease-modifying drug on the market in 2012.

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

Fund it more--it would speed the race to the cure for Fragile X.

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

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

Life-changing

Will you tell others about this organization?

Definitely

How did you learn about this organization?

Researched it on the Internet, spoke to families affected by Fragile X and scientist conducting research on Fragile X.

What is this organization's top short-term priority?

Increasing fudning for Fragile X research--so that effective treatments and a cure can be brought to all affected by Fragile X faster.

What is its top priority in the long run?

Curing Fragile X; that is a wonderful thing about FRAXA that it remains so focused and determined, unwavering in its pursuit of a cure.

When was your last experience with this nonprofit?

2011

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