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Fraxa Research Foundation

Rating: 5 stars   47 reviews 2,380

Nonprofit Issues:

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.

2015 Top-Rated Nonprofit
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9784621866
http://fraxa.org

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Reviews for Fraxa Research Foundation

Rating: 5 stars   Featured Review

4 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  

My grandson DJ was born in December 2011. About a year after he was born we came to learn that he had a full mutation of Fragile X Syndrome. Upon learning this I looked for any way that I could help my son and his family. I looked at the related charitable organizations and found FRAXA. With that, I felt a purpose in life to help raise money to find the cure and/or treatments. FRAXA has been a wonderful organization that has helped me learn and understand so much about Fragile X. The people and the mission align with my heart and soul. Working with FRAXA leadership and other volunteers has not only enlightened me, but has felt very much like I belong to a new family.

 
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Rating: 5 stars  

1 person found this review helpful

FRAXA is an organization dedicated to a cause close to my heart: doing everything possible to aid in finding the cure for Fragile X. It isn't just their mission that serves a greater purpose, but all of those involved from the staff and volunteers to the Board and donors representing the epitome of service, dedication and sacrifice. I am thankful this organization exists and has helped us learn so much in dealing with Fragile X for my grandson DJ.

 
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Rating: 5 stars  

1 person found this review helpful

FRAXA is an amazing organization committed to finding the cure for Fragile X. Katie and the whole staff are some of the most dedicated individuals I've encountered, and they truly make the most out of every donation they receive. What sets FRAXA apart is their combination of funding research into Fragile X Syndrome and also providing a variety of events and resources combining the medical and practical that really help the Fragile X community and bring it together. They also help organize great events for fundraising, such as Patrick's Pals Basketball Tournament. FRAXA was founded by parents of children with Fragile X Syndrome, and I think that their love shows in the organization and causes it to be one of the most dedicated and efficient non-profits for which I've had the opportunity to volunteer.

 
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Rating: 5 stars  

1 person 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  

1 person found this review helpful

Fraxa has been a wonderful ally to our small group as we have raised money for medical research for 20 years. Katie and Mike, the founders, have been there to help strategize, promote, encourage and attend our event. Everyone involved in Fraxa has been a joy to work with.

 
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Rating: 5 stars  

1 person 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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Role: General Member of the Public
Rating: 5 stars  

1 person found this review helpful

This is a remarkable organization with remarkable leadership. For families that receive a diagnosis of Fragile X, there is an immediate and intense need for trustworthy support resources. FRAXA is there for thousands of such families. They are leaders in raising money to fund research for treatments and even a cure; their research dollars have moved science ever closer to achieving that goal. Katie and Mike are, quite simply, amazing.

 
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Rating: 5 stars  

1 person found this review helpful

I have worked with the FRAXA Research Foundation for the past 20 years and am constantly amazed at what this group has, and continues to accomplish. It is an honor and a privilege to be associated with Katie Clapp and the FRAXA Research Foundation. We're going to find a cure, soon!

 
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Role: General Member of the Public
Rating: 5 stars  

1 person found this review helpful

FRAXA is a well-run organization that was started by a couple whose children were diagnosed with Fragile X at a time when there were very few resources available for parents and when scientific research regarding the causes of the condition was in its infancy. With nothing but grit and determination, FRAXA is on the map at the highest levels of scientific research and thriving some two decades later. As day to day director, Katie Clapp is second to none in terms of responsiveness to fund raisers, doctors, experts and most of all parents and their children.

 
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