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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

94 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

Abby K.2

Donor

Rating: 5

I donated to help find more information on Fragile X. This is a great organization that supports finding better treatment and ultimately find a cure for Fragile X.

Donor

Rating: 5

Their cause is the reason to be a donor. I think the folks at Fraxa are dedicating their research to finding a cure, improving the knowledge sharing and providing compelling work to everyone interested or those that have had their lives touched by Fragile X. Be a donor and make a difference in the live of many.

1

General Member of the Public

Rating: 5

Fraxa is doing amazing research with RUSH in Chicago to find a cure for this genetic caused disability. It's the leading known genetic cause of autism. They are networking families that have children with Fragile X together for support. Additionally, they are leading the way in educating the public on this disability. Go FRAXA!

Donor

Rating: 5

Our family has been donating to FRAXA for many years. FRAXA gives us hope for a better life for our nephew because their research will find a cure for fragile X someday.

Donor

Rating: 5


FRAXA is proof there is a God !!

Our son was diagnosed with FX when he was 18 months old... he is now 25. It was a miracle back then!!! Shortly after that we had the honor of meeting the founders of FRAXA, Dr Mike and Katie at their home. It was one of the most memorable experiences and important relationships we ever made.
Their perseverance and determination to find a cure along with their gift of knowledge turned our despair into hope and that hope remains steadfast til this day.
The Fragile X community is completely blessed to have a team like FRAXA. All their endeavors make each day that passes, one day closer to a treatment or a cure. Yes, we all reap the benefits of all their hard work. We will continue to support FRAXA every step of the way and hope you will come along side them too. Thank you forever FRAXA, God gave us hope through you !!

2 Brad P.3

Donor

Rating: 5

I am the brother of a child with Fragile X Syndrome, and my family has been involved with FRAXA as donors for years. I have seen firsthand how dedicated this organization is to funding research to find a cure for Fragile X Syndrome. Their work brings hope to so many families that are affected by this disorder.

Volunteer

Rating: 5

One thing that I believe makes FRAXA stand out as a nonprofit is their extremely engaged board of directors. The staff, board, and volunteers collaborate well together in spreading awareness for Fragile X and engaging community members in finding a cure. I love volunteering for this organization because of how helpful and genuine the staff are - it makes it easy to volunteer my time! Overall FRAXA has taught me so much about Fragile X and has made me hopeful in finding a cure.

1

Donor

Rating: 5

FRAXA has been an outstanding organization over the years I've been involved. My nephew has Fragile-X and FRAXA has provided fantastic support. Keep up the good work!

1 kenclinicalbid

Volunteer

Rating: 5

One of our company founders has a grandchild who has Fragile X. As a result we have engaged the company to support their efforts and have found them to be a wealth of information. We have had numerous interactions with the founders and have experienced a high level of commitment and integrity

1

Volunteer

Rating: 5

I've volunteered several times for FRAXA. They have a great staff and the founders are dedicated to keeping costs down so more money goes directly yo research. This foundation is having impact on the Fragile X community by supporting research and giving families hope for a breakthrough.

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3

Volunteer

Rating: 5

FRAXA is a very highly rated nonprofit that is very efficient and keeps costs down. I am proud to help this organization as a volunteer at many different events.

1 debbie stevenson

Board Member

Rating: 5

As we get older our friends are becoming more interested by the day in brain research. Alzheimer’s, Parkinson’s and dementia creep into our conversations, sometimes concern for an elder partner and sometimes my peers starting to get some signs there own health may not be as it once was. FRAXA has been advancing brain research for over 3 decades now, and never has there been a harder working charity. Fraxa leverages, works with volunteers, and influences science all on a tiny budget in the realm of brain research. If you want to get the most of every charitable dollar, this is the organization for you.

Previous Stories

Board Member

Rating: 5

FRAXA Research Foundation has a clear mission to find treatments and ultimately a cure for Fragile X. Fragile X is similar to autism and in many cases it's a very debilitating mental disorder. Finding medications that could lessen the effects for a person struggling with Fragile X could dramatically impact quality of life. FRAXA not only funds the best research worldwide, but also acts as an intermediary between pharmaceutical companies, government agencies, researchers and families in an to advance this work. FRAXA does all of this with a very limited staff and on a shoestring budget, by very frugally spending money raised and by utilizing volunteers to fundraise and pitch in when possible. Few organizations do as much with as little as FRAXA Research Foundation. The brain research FRAXA funds will likely give us much greater insight into many other disorders including autism, Parkinson's, and Alzheimer's. Finding medications to treat mental impairment is the future and FRAXA is at the forefront of this work.

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1

Professional with expertise in this field

Rating: 5

I've worked at FRAXA since Feb. 2017 and can attest that this is an amazing organization. Katie and Mike have been so dedicated since 1994 to the mission to find effective treatments and ultimately a cure for fragile X. I am so impressed with their continued commitment to funding important research. As the only nonprofit organization that is directly funding research, FRAXA plays an important role. FRAXA has a world class scientific advisory board and strong governance by its board of directors. Having worked at other nonprofits, I am also impressed by how efficient FRAXA is in terms of keeping costs down so as much support as possible can go to research. I'm proud to be a part of FRAXA.

2 Olivia E.2

Volunteer

Rating: 5

Growing up with a sister diagnosed with Fragile X at birth, FRAXA quickly became something my family heavily relied on and turned to for hope. FRAXA Research Foundation is compromised of some of the most invested individuals who tirelessly work to advance research efforts and generate widespread awareness. Because of their commitments, FRAXA has and will continue to better the lives of those in the fragile X community, like my family, through diligent efforts ultimately aimed at finding effective treatments and a cure. I am forever grateful for the work FRAXA has done and its immense success in the non-profit world.

2

General Member of the Public

Rating: 5

This is a great organization and I am so happy there is work being done that is focused on research. I am very excited about the strides that have been made and I am looking forward to the future.

2

Volunteer

Rating: 5

This is a wonderful organization that is truly making a difference for so many people. They are focused on research and finding a cure to improve the lives of those who are affected by Fragile X. As someone with a family member who has Fragile X, it is exciting to see progress being made.

3

Volunteer

Rating: 5

FRAXA is a great organization for my nephew with Fragile X. It's been a wonderful journey to help such a great team make a difference. With all the research activity driven by FRAXA, there will one day be a cure and FRAXA is making it happen. Great job and hats off to the FRAXA Team!

Previous Stories
3

Volunteer

Rating: 5

Working with FRAXA for the last 10 years has been a great experience as Katie's team stays laser focused on those affected with Fragile X. Running an annual FRAXA golf tournament takes a solid commitment from an entire team of volunteers, donors, players, sponsors and most of all the support of the nonprofit. FRAXA's continuous support has really helped my nephew grow from a boy to being THE MAN! And that sense of accomplishment resonates throughout the entire organization. Thank you FRAXA!

1

Client Served

Rating: 5

Our son Preston has FX. FRAXA has been so supportive since we first connected with them over a decade ago.

We now raise money for this charity is it continues to drive towards a cure for Fragile X Syndrome.

Thanks so much to Katie, Michael and team!

2

Donor

Rating: 5

Thank you Mike and Katie for your tireless efforts on behalf of the fragile X community. We appreciate the hard work helping our families. We will continue to support FRAXA until there is a cure.

3

Volunteer

Rating: 5

I began volunteering at FRAXA back in October 2017. I knew nothing of fragile X at the time, but Katie and Dave's reputations well preceded them. I wanted to be a part of their dedication, their passion, and their unwavering will to succeed. Being a part of this movement has been nothing less than inspiring. The FRAXA Research Foundation aggressively pursues all channels in hopes of uniting a community and enabling them with the hope that a cure is on the horizon.

2

Board Member

Rating: 5

FRAXA is a great organization. It is hope for all of us who have family and loved ones affected by Fragile X. FRAXA will get us to the cure for it. The team is dedicated, determined, knowledgeable, capable--cannot speak highly enough of it.

Previous Stories
3

Board Member

Rating: 5

FRAXA has been on the forefront of research to find a cure for Fragile X for over a decade at this point. The organization's dedication to funding the most promising research and focus on what is likely to yield results near term has brought a cure within reach. In addition, FRAXA has been very careful with donors' funds, spending very little on ongoing operations and passing on the vast majority of the donations to funding research.

2 Eric W.2

Donor

Rating: 5

FRAXA Research Foundation is a great organization dedicated to their mission of finding effective treatments and, ultimately, a cure for fragile X syndrome. Having two boys with fragile X I am extremely grateful how hard everyone involved with this organization works. They do an amazing job of selecting the projects and research teams that can make an impact.

3 Dean C

Board Member

Rating: 5

No single nonprofit organization is doing more to fund research for curing Fragile-X Syndrome than FRAXA. As a parent of a son with this disease, FRAXA continues to give me the hope I need not just for my son, but for the many families struggling on a daily basis with the many challenges of living with and supporting affected individuals.

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6

Board Member

Rating: 5

I defy anyone to find a nonprofit this focused on finding a cure for Fragile X Syndrome, and hopefully Autism too! FRAXA is deeply rooted in funding research that is going to someday get this job done.

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3

Donor

Rating: 5

I am a FRAXA Research Foundation donor (and friend of a family with a son with fragile X). I am so impressed with the dedication of the staff and the board of directors of this organization. The foundation was started by parents of children with fragile X and they continue to be dedicated to finding treatments and a cure by supporting research. I also read about the board of directors and learned that they do a lot to raise money for the foundation. I really like this level of commitment to the cause. The fragile X community is lucky to have FRAXA because they are the only nonprofit that is directly funding research, which is important to me. And they are a very efficient charity.

1

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

3

Volunteer

Rating: 5

FRAXA is a fantastic organization that I have been fortunate enough to be associated with over the past 21 years. Since 1997, I have helped manage and operate an annual event (http://www.patrickspals3on3.org/) to raise money for Fragile X Research, and to help find a cure. I am honored to be associated with the fabulous Katie Clapp, as well as so many other incredibly dedicated people involved with running FRAXA.

Previous Stories
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

Client Served

Rating: 5

Both of my children have fragile X syndrome and the hope that FRAXA gives us with their dedication to researching a cure cannot be measured!

3

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

3 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
5

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.

5

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

General Member of the Public

Rating: 5

"Father of 17 years old kid affected by FXS.

Finding a way to cure a rare and devastating disease : Fragile X Syndrome
It's the uncommon challenge of FRAXA.

Only few years ago, this syndrome wasn't known nor studied.
Do remember that all started with the discovery of a gene in 1991, than the replication of the disease, mouse model in 1994, than new knowledges about FXS and with clinical trials to modify the disease.

Since more than 2 decades, FRAXA inspires all scientists to develop new works and to conduct new studies about FXS. Every year, FRAXA is on track with only regard on its own target, encouraging worldwide all scientists to work more harder, and more smarter, to find the clues so that the adverse effects of the disease can be countered.

Until today no central nervous illness has been cured. By Gods grace and FRAXA, FXS might be one of the first ones.

FRAXA demonstrates that a dream, a cure, might in a near future become true.

FRAXA is an excellent example of the American dream: utopia might become reality.

Those are among many other valuable issues why FRAXA is so special.
Gerard

2

Board Member

Rating: 5

FRAXA is the hope for a cure for Fragile X. Even more, FRAXA is the catalyst to the cure. The organization raises funds for Fragile X research and then awards grants towards most promising research and science for the cure. It is very well run, by a group of dedicated parents and professionals, volunteers who care and who will not stop until there is a medicine for Fragile X in medicine cabinets of those who need it. It is very well run, with only the minimal portion of funds raised going towards the organization's expenses and vast majority towards where the funds are needed--Fragile X research.

Previous Stories
2

Board Member

Rating: 5

FRAXA is the hope for all those affected with Fragile X and their families. The organization is singularly focused on funding research to cure Fragile X. It is very efficient in terms of using donor funds in putting it towards research--a cut above most other organizations funding medial research. The organization is able to sollicit excellent research proposals from research community and has a spectacular record in funding most promising avenues towards a cure. It is examplary in its collaboration with parents and families of those affected by Fragile X, researchers and the scientific community, pharma companies. FRAXA is the hope--and promise--of a Fragile X cure.

Review from CharityNavigator

Volunteer

Rating: 5

I chose to volunteer for FRAXA because I am impressed by the way the organization works methodically and intentionally to bring together people and resources. FRAXA streamlines research and clinical trials through strategic planning and creative resourcing to achieve results that make an impact.

1

General Member of the Public

Rating: 5

FRAXA is my go-to source for the latest information on Fragile X. Since 1994, FRAXA has been successful at speeding the pace of research by providing essential support to scientists. This research is changing the lives of families coping with fragile X.

1 Laura194

Volunteer

Rating: 5

This is a wonderful organization that has done so much to help people like my brother. I greatly appreciate their work and the research that has resulted from their efforts.

Previous Stories
3

Volunteer

Rating: 5

My brother has Fragile X and my parents founded FRAXA in order to find a cure for him and others affected by Fragile X. The work they have done over my lifetime continues to amaze me. The foundation has come so far from being a small operation in the spare bedroom of our house to an amazing foundation that has made so much progress. It gives me hope for my brother and my future children who could also have Fragile X (I'm a carrier). I am so proud to see how much has been done and how much continues to be researched and developed.

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.