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   Featured Review

2 people found this review helpful

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.

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

Most efficient non-profit I have ever seen. Don't change.

Was your donation impactful?

Definitely

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When was your last experience with this nonprofit?

2014

 
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kclapp (Nonprofit Staff) wrote:

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

Rating: 5 stars  

1 person found this review helpful

FRAXA Research Foundation is absolutely devoted to its mission, which is to find a cure for Fragile X Syndrome. They don't waste money on administrative costs or education, although they DO educate through their website and research grants. They've gathered the finest minds in genetics and physiology and together they make decisions to fund promising grants from around the world. I truly believe that FRAXA will find a cure for this devastating syndrome in our lifetime, and I will continue to support them - and cheer them on. They are the best hope for families there is!

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

No changes, but I'd like to see more federal funding.

Was your donation impactful?

Definitely

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Definitely

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Definitely

When was your last experience with this nonprofit?

2014

 
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Rating: 5 stars  

Fraxa Research Foundation was instrumental in helping parents living abroad in building our first Fragile X Association and clinic (trial site). Research founded by Fraxa and guidance they provide to support groups, are key ways to bringing treatments to market and finding a cure. Association X fragile Quebec.

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When was your last experience with this nonprofit?

2013

 
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Rating: 5 stars  

1 person found this review helpful

I am constantly amazed at this organization's track record. Their expense ratio is one of the lowest I've seen. And the work that they are doing on behalf of the greater community of folks afflicted with intellectual disabilities is absolutely phenomenal.

Was your donation impactful?

Definitely

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Definitely

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When was your last experience with this nonprofit?

2013

 
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Rating: 5 stars  

1 person found this review helpful

When our son was diagnosed with Fragile X Syndrome we were looking for one thing, HOPE. FRAXA provided that for us. We researched FRAXA and stopped by their offices without an appointment. We found passionate parents in a bare bones office space and have never thought twice about whether our monetary contributions are going to anything other than research.

Was your donation impactful?

Definitely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

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 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.

Was your donation impactful?

Definitely

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Definitely

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Definitely

When was your last experience with this nonprofit?

2013

 
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Rating: 5 stars  

1 person found this review helpful

When my close family members were diagnosed with Fragile X, I felt sad, angry and helpless. However, when I discovered FRAXA, my sense of helplessness was replaced with a sense of hope. When I donate to FRAXA, I am confident that my donation is being used efficiently and for the purpose of trying to find a cure for a devastating disease. Even though I cannot make large contributions to FRAXA, the organization has always been gratious about receiving my small donations, and they make me feel that I am helping contribute to finding a cure for Fragile X.

Was your donation impactful?

Likely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

When was your last experience with this nonprofit?

2013

 
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