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FRAXA Research Foundation

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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 $27 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: 27 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: Worldwide, including the U.S., Canada, Europe, South America, Australia, and Singapore

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

118 Stories from Volunteers, Donors & Supporters

8

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

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.

4

Donor

Rating: 5

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!

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

Donor

Rating: 5

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.

2

General Member of the Public

Rating: 5

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.

2

General Member of the Public

Rating: 5

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.

2

Donor

Rating: 5

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!

2

Professional with expertise in this field

Rating: 5

Wonderful charity run by incredibly dedicated people; they really are making a difference and getting things done! They have already gotten a lot of different treatments for fragile X into trials and they're doing all kinds of research on other possible treatments.

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 Mike Snape

Advisor

Rating: 5

I have interacted with FRAXA since 2006, acting as a researcher working in development of new medicines for Fragile X Syndrome. What attracted me to FRAXA in the first instance, and continues to be true today, is the role FRAXA has played in putting Fragile X Syndrome on the radar of the pharmaceutical industry. I can remember the days when there were no clinical stage investigations of novel potential therapeutic approaches to Fragile X Syndrome. Now there is an industry wide pipeline of programs in development across many companies. I think it is a simple truth that without FRAXA this would not be the case. The initiatives FRAXA has in place have, and continues to be, crucial to this critical mass of effort to find new options for people with lives touched by Fragile X Syndrome.

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.

3

Professional with expertise in this field

Rating: 5

As a FRAXA staff member for the past year, I have seen first hand what a wonderful organization this truly is. Katie and Mike, both the founders of FRAXA and parents of a young man with Fragile X, have shown extraordinary compassion and gratitude towards the families and donors affiliated with FRAXA. We work diligently alongside our donors, and consider them to be members of our family here at FRAXA. I'm proud to be a member of the FRAXA team, and am looking forward to our continued progress!

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!

2

Volunteer

Rating: 5

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

2

Volunteer

Rating: 5

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.

Previous Stories
1

General Member of the Public

Rating: 5

FRAXA Research Foundation really goes the extra mile to educate the public about Fragile X Syndrome. They have wonderful informational brochures, e-newsletters.

2 nansailor

General Member of the Public

Rating: 5

Watching the development, progress and accomplishments of this amazing organization has been very inspirational. Their efforts to involve the academic and research communities has been exceptional, bringing much progress. Their founders, parents of a Fragile X child, have accomplished a tremendous amount. Their support of families has meant a great deal to so many.

2 Barbara173

Donor

Rating: 5

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!

2

Volunteer

Rating: 5

I am the twin sister of someone diagnosed with Fragile X Syndrome and FRAXA gives me hope that one day there will be a cure.

1 X Fragile Q.

Donor

Rating: 5

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.

1 Darrel C.

General Member of the Public

Rating: 5

I believe FRAXA is fabulous. It's the one organization doing research that has the potential to really help my nephew Lucas lead a normal life

1 Audrey10

Client Served

Rating: 5

Having opportunity to participate in essential clinical trials sponsored by FRAXA.

2

General Member of the Public

Rating: 5

My Partner's son, Our son, has Fragile X Syndrome and he is now 23. My Partner has worked with him since his birth and was told he would never be able to talk or walk and most likely would not make it to adulthood. They were wrong, he works part-time in and with the public successfully for 3 years, he also does contract work through the agency where he resides and has day services. He might not know how to read, or write, however, he is still successful and very happy. Never think that someone with Fragile X must be put in a home or given up on, that is not fair to them, or to you.

2

Donor

Rating: 5

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.

2

Donor

Rating: 5

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.

2

General Member of the Public

Rating: 5

Our family was devastated when my nephew, Lucas, was diagnosed with Fragile X. FRAXA was the organization that offered hope, support, understanding and an unwavering dedication to finding a cure. Since FRAXA volunteers are the parents and families of those precious children and young adults affected, the monies donated truly go to research.
It's amazing how many people, including doctors and others in the medical profession, have never heard of Fragile X! In order to help awareness my license plate is FXCURE. When curious minds ask what it means, I find that handing out the cards from FRAXA help people understand what it is and how prevalent it's becoming. Occasionally one will comment that they either have or know of someone who has Fragile X or autism. I even met a football Hall-of-Famer whose daughter in law actually is doing research for a university using FRAXA grants. She became involved when her son was diagnosed. We need FRAXA and FRAXA needs us!

2

General Member of the Public

Rating: 5

Our cousins have been involved with this organization as a result of their son's diagnosis with Fragile X and having nothing but wonderful things to say about all the great support it provides for research and promoting public awareness of Fragile X.

3

Donor

Rating: 5

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.

2

Volunteer

Rating: 5

I have been intimately involved with Fraxa Research for more than a decade. I first visited Founders Katie Clapp and Mike Tranfaglia in their humble home office more than 16 years ago when my daughter was recently diagnosed with Fragile X. Their goals were clearly articulated back then: funding the most promising research to help find treatments for Fragile X. Today, Katie and Mike remain loyal to their words. While fundraising has been challenging over the past few years, the mission is stronger than ever. Expenses are kept at a minimum so that every single dollar goes into research. I know I echo the sentiments of parents all over the world who feel so fortunate to have found Katie, Mike and Fraxa: a lean, most efficient non-profit, wholly dedicated to finding a cure for Fragile X.

Review from Guidestar

3

Volunteer

Rating: 5

I am proud to be a volunteer at FRAXA Research Foundation. Fragile X is a devastating diagnosis as our family knows first hand. However, when our son was diagnosed we immediately became involved with FRAXA and found that there is real hope for finding treatments for this genetic disease. FRAXA's main focus is on funding the most promising research. Just looking at the financials (http://fraxa.org/newsArticle.aspx?newsroom_id=63) you can see that, in 2012 as an example, 86% of money raised goes to research and 7% to education. That is phenomenal. The research FRAXA funds has led from a basic understanding of the disease to the medications that are currently in clinical trials. FRAXA has also hosted various scientific meetings that foster more collaborations among scientists in the field. This has quickened the pace of research even further. FRAXA hasn't lost sight of its original mission and continues to push forward, funding new ideas in research that are leading to many new treatment possibilities. For me, I have been proud to volunteer my time and donate money to FRAXA for the past 6 years because of the commitment to maintain the highest level of support for research. I feel that FRAXA's efforts will offer the best chance of reaching our goal of getting a real treatment for Fragile X to market.

Review from Guidestar

2 Lisa165

Client Served

Rating: 5

FRAXA was created by parents of a child with Fragile X and it shows. This organization is dedicated to the treatment and cure of Fragile X Syndrome and they work towards this goal with a drive that only a person with personal involvement could have. As the mother of a child with Fragile X Syndrome, I can say with personal experience that FRAXA is not only out there raising money for treatments, but was there for me when I needed to find a clinical trial that was right for my son. A donation to FRAXA is money well spent and I recommend them to all of my family and friends.

2 Stefanie C.

Volunteer

Rating: 5

When our precious Lucas was diagnosed with Fragile X Syndrome in 1999 we were devastated. We immediately became involved with FRAXA and had our first fundraiser in 2000. We continue to support FRAXA with an annual fundraising mailer, not only to raise funds for research, but to spread awareness of the disorder. Let's continue to support FRAXA in working towards a cure for my son and millions of others who suffer from Fragile X Syndrome.

2

Volunteer

Rating: 5

FRAXA has provided me with a wealth of knowledge and given me all the information and materials necessary to raise awareness. I've only begun our journey with the diagnosis of fragile X for both of our boys. I just started to raise money and awareness. I wouldn't be doing so without their assistance. They have given me the tools that I need to learn and they continue to provide further learning opportunities. I would be lost without them. Just when I felt out on a limb all alone, they lifted me up and made me feel like I have support whenever I need it, just by being there and helping to give me hope and knowledge.

2 Michael S.

Board Member

Rating: 5

I've personally been involved with FRAXA for nearly 10 years, with the last 4 as a Board Member. Having seen both the internal and external workings of this organization, I can whole-heartedly say that FRAXA put nearly every penny of donations to work to find treatments and a cure for Fragile X. The staff is committed to the cause and the donors are acutely aware that their funds are put to excellent use.

Review from CharityNavigator