FRAXA Research Foundation

Rating: 5 stars   58 reviews

Address:

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.

2016 Top-Rated Nonprofit
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More Info

9784621866
http://fraxa.org

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Reviews for FRAXA Research Foundation

Rating: 5 stars   Featured Review

7 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

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?

2014

 
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(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 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!

 
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Rating: 5 stars  

3 people found this review helpful

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.

 
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Rating: 5 stars  

4 people found this review helpful

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!

 
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Rating: 5 stars  

4 people found this review helpful

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.

 
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Rating: 5 stars  

3 people found this review helpful

This foundation has provided on going support and help throughout our Fragile X journey! We have been inspired by their genuine effort towards finding a cure and helping families like ours that battle Fragile X every single day.

 
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Rating: 5 stars  

4 people found this review helpful

FRXA is a remarkable organization run by remarkable people whose mission is to find a cure for Fragile X which is the most common inherited cause of intellectual disabilities. It is also the most common known cause of autism. Led by Katie KClapp and Michael Tranfaglia, MD, FRAXA for over 20 years has worked tirelessly to raise awareness and fund research. Please consider donating to this worthy cause!

 
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Rating: 5 stars  

2 people found this review helpful

Fraxa is an amazing organization that has greatly raised awareness of Fragile X and as importantly funding for research.. Through their efforts they have inspired the medical community -- researchers and pharmaceutical companies -- to invest in search of effective therapies. Fraxa's level of commitment is unparalleled.

 
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Rating: 5 stars  

2 people found this review helpful

From the ground up this organization is top shelf in every way. Well over 90% of the money raised goes directly into funding research, no fluff, no excessive admn, salaries or perks, no wasted energy or resources. It is run by caring people whose mission is pure. 5 star all the way!

 
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Rating: 5 stars  

2 people 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

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?

2014

 
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