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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 $26 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, 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

18 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

Donor

Rating: 5

Happy National Fragile X Awareness Day! Dear FRAXA Team: You are truly dedicated, trailblazers, cutting edge researchers, wonderful and inspiring people, loving parents - changing lives and making the world a better place. Thank you Katie and Mike and everybody involved in running FRAXA for being so welcoming and running FRAXA so professionally as a global organization. You are stars! Go FRAXA

1

Donor

Rating: 5

We have been involved with the FRAXA Research Foundation for the past 10 years, helping to raise money for them through our charity golf tournament. We have raised almost $150,000 over those 10 years and we know that a very high percentage of that money is going to research to help find a cure for Fragile X Syndrome. Our son Preston has Fragile X Syndrome so it has been a labor of love to help FRAXA. Katie, Marna, Dave and team are totally focused on raising money to fund researchers that are driving towards a cure for Fragile X Syndrome.
Thank you all so much for everything you are doing to move this research forward.
Pete, Dawn and Preston Hall

1 Jessica275

Volunteer

Rating: 5

FRAXA does an amazing job putting the resources necessary in the hands of researchers and other companies associated with finding a cure for Fragile X. They have my utmost confidence that the support that we try to provide is put to great use. Thanks FRAXA for all of the work you do for a cause incredibly important.

Previous Stories
3

Donor

Rating: 5

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.

3

Donor

Rating: 5

We are The Pierces from Boston, MA and in the past 18 months have learned that both of our beautiful little boys, Graham and Reid, have Fragile X Syndrome. Within days of learning of this diagnosis, FRAXA had reached out to us to provide their support and a shoulder to cry on. Their support and knowledge about the positives and the challenges of what we were about to embark upon got us through a dark time. They are an organization that is cutting edge and are doing unbelievable research worldwide. We are so lucky they are located locally in Massachusetts. They are a passionate organization led by two incredible parents who have dedicated their lives to helping not only their own children but countless others. They run the organization will little expense and give parents an opportunity to use their skills to help them in their overall goals. I am happy to say we are part of the FRAXA family and have a high vested interest in making sure they are successful as our boys lives depend on it. It Takes a Village

2 Lisa266

Professional with expertise in this field

Rating: 5

I have family members that have Fragile X and FRAXA has been an outstanding resource and source of support for up to date information on the latest happenings in research and fundraising efforts.
It's incredible & reassuring to see what FRAXA is able to accomplish with minimal operating expense and a LEAN, no-frills team.
The news alerts/newsletters are always encouraging as they advise of the latest breakthroughs in research and trials which are so essential in finding a cure.
Reading about the various fundraising efforts across the world gives ideas about how even a little effort can make a difference.
FRAXA should serve as a role model for how to run a lean, efficient and effective organization!

Previous Stories
4

Donor

Rating: 5

FRAXA has been a part of our family since my niece and nephew were diagnosed with Fragile X. It's a very lean organization which lets me know my donations are going far to help find a cure for Fragile X. The communication from Katie and board members has been clear, constant and informative. I feel so confident that my niece and nephew and our entire family are in good hands with the funds that are directed to research. Everyone involved with FRAXA that I have met at various fund-raisers through the years is passionate about finding a cure for Fragile X and having this as a top priority unites FRAXA and keeps it focused on this goal.

1

Donor

Rating: 5

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!

4 Sally N.

Donor

Rating: 5

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.

4

Donor

Rating: 5

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!

4

Donor

Rating: 5

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.

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!

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

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 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!

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.

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

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.