FRAXA Research Foundation

Rating: 5 stars   50 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.

2015 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  

1 person found this review helpful

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  

2 people 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  

2 people 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

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

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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Rating: 5 stars  

1 person found this review helpful

I was an intern at this organization and it is full of wonderful, dedicated people. My brother is severely affected by Fragile X and it is great to know that there is a organization that is making so much progress to helping people like him.

 
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Rating: 5 stars  

3 people found this review helpful

Medical research has made tremendous progress in many areas. But as the brain is by far the most complex organ known to man, progress in brain research has until recently been limited. With FRAXA we have an opportunity to change this. With very little resources, FRAXA follows an extremely effective approach to promote and fund research to find a cure for Fragile X Syndrome. This has the potential to be a game changer for people affected by Fragile X as well as many other brain conditions, because many share a similar biological cause. Solving Fragile X lies within reach, and will be a welcome medical breakthrough resulting in many discoveries benefiting millions of people. FRAXA will make our world a better place.

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

Focus on improving revenue from donations, allowing the organization to speed up research and increase the likelihood of finding a cure to fragile X Syndrome rather sooner than later.

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?

2014

 
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Rating: 5 stars  

2 people found this review helpful

As I watch my grandson DJ play I am continuously reminded that the children are the blessings of this world we live in. DJ came into this world in December 2011 and we were so excited to welcome this little man (I know, who calls a baby a little man, right) into our family and into our hearts. It was 6 - 9 short months later that we started recognizing some different behaviors with DJ. It couldn't be Fragile X Syndrome as DJ's mom was already tested and the test came back negative. So what was going on with this precious baby? In early December 2012 DJs mom was at her annual checkup where she asked the health care person to review the Fragile X test in her records. The health care professional said there was no test in her records. While DJ's mom didn't understand what happened and why there wasn't a test, she did know that she had to be tested right away. The tests came in and the results were somewhat expected to our daughter-in-law. She was a carrier. Time for DJ to get tested and the results came back full mutation. As we celebrated this baby boy's first birthday we came together as a family with a goal to better understand Fragile X Syndrome. We established goals to better understand Fragile X Syndrome, to raise awareness, and to do what we could to help find a cure. There are a couple of great Fragile X charities that we came upon, but FRAXA Research Foundation seemed to be a charity that our family could align with. To us they demonstrated passion in helping to find a cure for Fragile X Syndrome and to help raise awareness. Once we introduced ourselves and really met the people at FRAXA we were totally amazed. They are kind and giving and caring people. They are great people with a hope for the future. We are working with FRAXA to put together a team of runners for the 2014 Marine Corps Marathon and it has just been a great experience. When we need something from FRAXA they are there to immediately respond. They are simply amazing! And as for DJ, he is simply amazing as well! We love that little man like there is no tomorrow!

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

The only thing I would want to do is help them grow. If I only had that knowledge and experience...

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?

A lot

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?

2014

 
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Rating: 5 stars  

2 people found this review helpful

Fraxa never ceases to amaze me. It is a highly professional organization that maintains a personal, human touch.

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

Clone Katie

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?

A lot

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?

2014

 
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Rating: 5 stars  

2 people 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  

1 person found this review helpful

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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