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Nonprofit Overview

Causes: Autism, Brain Disorders Research, Disabilities, Health, Philanthropy, Philanthropy, Voluntarism & Grantmaking Foundations, Specifically Named Diseases Research

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.

Community Stories

20 Stories from Volunteers, Donors & Supporters

7

Donor

Rating: 5

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.

Comments ( 1 )

kclapp 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

2

Volunteer

Rating: 5

Fraxa Research was where we turned when we learned our three-month-old daughter had Fragile X Syndrome. Katie Clapp not only offered wise advice, and tons of support, but she shared with me the kinds of research Fraxa was funding, research that would help the many families struggling with this diagnosis. Thank you Katie for making a difference in the lives of so many. Leslie M.

3

Volunteer

Rating: 5

As a parent of a 15-year-old son with Fragile X Syndrome, I desperately want a cure. FRAXA is the only organization in the world solely focused on finding a cure for fragile X. According to its web site, FRAXA is one of the most efficient charities in the world where 93 cents of every dollar is spent on research. That's where I want my money to go — to find a cure and not for administrative costs or for education, advocacy or support. FRAXA is investing more than $1 million in translational research in 2016 and has invested more than $25 million since its inception. Keep doing what you are doing, FRAXA. Find a cure. Today.

4 Roxanne12

Volunteer

Rating: 5

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.

5 Jeffrey S. C.

Volunteer

Rating: 5

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.

5

Volunteer

Rating: 5

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.

3

Volunteer

Rating: 5

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.

2

Volunteer

Rating: 5

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!

2

Volunteer

Rating: 5

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.

3 ReneDeVries

Volunteer

Rating: 5

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.

2

Volunteer

Rating: 5

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!