FRAXA Research Foundation has provided a lifetime of support to my family and others alike through its uncompromising dedication to finding treatments and a cure for Fragile X Syndrome. I feel fortunate to have grown so close to its co-founders, Katie and Mike, who work tirelessly to drive FRAXA's valiant efforts since its conception in 1994. It has been an honor to have witnessed first-hand the direct impact FRAXA's progress has made on both my family and others impacted whom it has forever brought into our lives. I look forward to the continual, inspirational growth on the road ahead alongside our FRAXA Community.
Parent-run, for decades now, FRAXA has been funding critical research into fragile X, looking for a cure. Progress has been tremendous, given the dedication of the organization, its fundraising efforts, and targeted funding of most promising research. The organization is very well run, with minimal overhead, making sure that maximum amounts are being spent on research.
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FRAXA supports and funds the most promising research and studies to find a cure for fragile X. The organization is very well managed, with very, very low overhead costs, making sure that all its funds go toward research. It funds the best research globally. It is supported by a broad network of dedicated volunteers, parents, family members, caregivers of those with fragile X.
FRAXA's commitment to Fragile X and research is unwavering. Their work has been instrumental in identifying and advancing discoveries in the field. Their approach to collaboration has opened doors to many new potential opportunities, all to improve the lives of those impacted by Fragile X.
Thank you FRAXA!
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FRAXA is an amazing non-profit. Their involvement in Fragile X research is paving the way for scientific breakthroughs and will result in meaningful change for those impacted by Fragile X, and their families. They have stayed focused on the mission and have become a role model organization for other patient led non-profits. I'm honored to be part of FRAXA and am grateful for all that they do.
I have three grandchildren with Fragile X. When they were first diagnosed, there did not seem like there was a lot of hope for their future but after finding FRAXA and reading about the research that they fund our family feels like the future will be much better than first thought. Two of our grandsons are in drug trials that fraxa funded right now and both are showing good improvement and it is two different drugs ---wow! I never thought I would see in my lifetime the potential for there to be more than one option to help them. Fraxa makes things happen and I'm happy to get to see that directly in my grandkids.
FRAXA is truly amazing to me because of the hope it brings to families like mine, with a son affected by Fragile X syndrome. Their dedication to funding groundbreaking research gives me confidence that better treatments, and even a cure, are within reach. Beyond the science, FRAXA creates a community where I feel supported, understood, and connected to others who share the same journey. The organization's relentless efforts make a real difference, offering hope and practical help to families like ours.
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FRAXA is the ONLY organization in the USA that I am aware of that is solely dedicated to researching a cure for Fragile X Syndrome. They are mostly a parent-run team of extremely professional and bright individuals. I especially appreciate that nearly every dollar donated goes directly towards funding research grants.
FRAXA has helped our family for many years by providing hope through research. The research has come a long way over the years. This would not be possible without FRAXA.
Fraxa has been the most well run and efficient non profit since its inception, and is continually recognized for its ability to directly fund research grants and fellowships at top universities around the world.
I met Parker Roos a couple years ago. I quickly became his friend and now his personal assistant. I've been by his side every step of the way while he's been apart of the Tetra Therapeutics trial. When I first met him he did not speak in clear sentences, he did not read much or more that a few sight words, he could not self soothe himself when near a meltdown, he did not express his feelings much, and he spent most of his days hyper fixating on topics and dates. All this has changed significantly! Every single one of them I just mentioned has improved, his anxiety throughout the day has lessoned and he seems more comfortable in his own skin, able to enjoy his days, expressing what he needs and wants, and entertaining all who are around him with his great sense of humor! The impact this new treatment has had on him has been amazing to watch happen for him!
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I have followed Parker’s journey for many years through social media and the news. Last year I met Parker and his mom at the dog park, we immediately hit it off and became fast friends. It has been an absolute joy to have Parker in my life. We see each other almost every morning when we bring our dogs to the dog park and I hang out with him several days a week while his mom works. I’ve learned a lot about FRAXA and the work that they do over the past year and like keeping up on the research that they are funding. I’m amazed by how much they are able to do. I love participating in World Fragile X Day and showing my support for FRAXA and the Fragile X community. I am excited about the new drug trials that are out now and to see what else they are working on. I love Parker exactly how he is but know that to see him live without the anxiety and challenges he faces would be amazing for him. I appreciate the work that FRAXA does for the lives of everyone living with Fragile X.
Ryan S.
I am the younger sibling by 3 1/2 years but I've always been the "big, "little", sibling" to my brother with Fragile X syndrome. I've watched him participate in various drug trials over the years, all funded (at some point) by FRAXA. Recently I returned home from my first year of studying in the UK. While I was away, my brother started a new drug trial that I've been following since FRAXA first funded it through it reaching the phase of clinical trials my brother could participate in. I could not believe the difference in him when I returned. He handled the airport crowd, greeted me with a huge hug, took lots of pictures (which he hates!), and waited patiently for my luggage - all while cracking jokes and having the best time. He now calls me regularly on Facetime and the phone to talk, something that has improved significantly since starting the trial. The difference in him has been nothing short of a miracle. And I know we have FRAXA to thank for that. FRAXA gives families everywhere so much hope for a better future. I've seen their advances over the years and am certain that even more amazing things are coming thanks to the research they are funding. I've met many other siblings over the years from many countries, I know I am not alone in saying that we, as siblings, appreciate FRAXA and the work they do, the dedication to the research they fund, and the hope they give us all.
I recently started volunteering with FRAXA, and have seen how passionate they are about the work they do, not only to raise funds to support research but to also raise awareness about Fragile X Syndrome. I have also seen how much effort is put into organizing World Fragile X Day illuminations. FRAXA is a wonderful organization doing everything they can to find a cure!
FRAXA Research Foundation is incredibly dedicated to exploring pathways towards effective treatments for Fragile X syndrome. FRAXA's work in supporting current and emerging research, in maintaining hope for improved health and daily living outcomes for young and adult children living with Fragile X syndrome, .and in raising awareness of Fragile X syndrome, benefits the Fragile X community world-wide.
FRAXA has dedicated themselves to funding diverse and innovative research projects worldwide in search for a cure for Fragile X Syndrome. Our son was diagnosed just before his third birthday and FRAXA has been an important resource for us on our journey. When you donate to FRAXA, you know where your donation is going. Having worked with FRAXA for just about 20 years personally and through our non-profit foundation in Florida, I can say that it is a top-notch organization. They are dedicated to the families affected by Fragile X and to finding a cure so that those affected can have a better life.
FRAXA is the first organization I found when my son was diagnosed with Fragile X Syndrome. Their determination to find a cure is without measure. The strides made to date are so exciting. I can’t wait to see what happens next. FRAXA will lead the way for our kids to live their best lives.
I have known Mike Tranfaglia and Katie Clapp since we met at the 3rd International Fragile X Conference in Snowmass, Colorado, in 1992. Along with many other parents, my wife and I were there because our child had Fragile X Syndrome. She was 11 then and is now 42. Soon after the 1992 conference, Katie and Mike founded (along with other parents of children with Fragile X Syndrome) the FRAXA Research Foundation with the goal of finding effective treatments and ultimately a cure for Fragile X syndrome. My wife and I have been donors to FRAXA ever since. FRAXA has been continually in the forefront of advancing research on treatments for Fragile X, wisely leveraging its funding with federal and other funding sources in many cases. The investments have both improved our understanding of how the FMR1 mutation causes Fragile X but more importantly have identified potential drug targets, some now under test in clinical trials. There is real hope that effective treatments will come soon.
I have been associated with FRAXA since its founding in 1994. One thing that has always been clear is that Katie Clapp and Mike Tranfaglia have spent FRAXA's income wisely and well. Indeed, they are known to watch every dollar, so that they can spend the funds raised on research that can lead to a cure for Fragile X Syndrome. I've seen their activities up close for the past 29 years, and I continue to be in awe of FRAXA's work. The research is progressing quickly now and I'm convinced that FRAXA-funded research has been a major contributing factor.
Mary Beth Busby
FRAXA’s mission is a noble one. Funding & Hope for families with Fragile X Syndrome. I’ve been involved in donations for the past 8 years with my soccer club in NJ. Our annual game, the Callum Cup, named for my son, has raised over $100,000 for FRAXA. It is my belief that sending donations directly to FRAXA, who then provide grants to institutions & colleges gives FX families the best shot at finding a cure. Oh & they’re also a lovely group of people.
FRAXA is an organic organization which helped usher my family into the world of Fragile X. Katie and Mike have provided guidance, education and hope to the FX community. FRAXA sponsors basic research into scientific progress for potential Fragile X treatments. We are grateful for having hope for a cure thanks to FRAXA.
FRAXA has been fundamental for me in my knowledge of Fragile X syndrome. It has been and continues to be a great help to me. In addition, their work on behalf of those affected is to be commended. In short, a very important organization for all of us.
A friend I went to school with has Fragile X syndrome, now, as adults I coach his Special Olympics basketball team. I’ve learned a lot about Fragile X from his mom and through research I did on my own in high school and college. I was fascinated by the research advancements that were happening because of the funding FRAXA provided to them. I know they will be the reason the research that creates the cure will be funded. The staff at FRAXA are friendly and very knowledgeable, I have had great interactions with them. I’m proud to support FRAXA and cannot thank them enough for the work they do to make my friend’s future better.
FRAXA has been a remarkable force working for improved treatments for fragile X. The Foundation has pioneered community based drug development in the field of rare diseases and isn't just advocating for a cure, it's actually directing the process of drug discovery. FRAXA funds basic research that helps us understand the mechanisms of disease in fragile X; 28 years' worth of this work has led to the discovery of many drug targets. The FRAXA Drug Validation Initiative tests promising new treatments in animal models, and this has led to many clinical trials around the world. The most recent trials have been the most successful ever, and new treatments are likely coming very soon!
FRAXA research foundation has been a light for us. I have a son with FMFX, and their non profit not only works hard to fund finding a cure, they also connect families through social media posts, raise awareness, and make families like mine feel not so alone in this fight. They are amazing!
FRAXA has demonstrated efficiency year after year with their allotment of research funding and low overhead.
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FRAXA lives and breathes it’s mission to help the Fragile X community through funding cutting-edge research. I know when I support and donate to FRAXA, they will be excellent stewards of my contributions. The research they are finding will ensure a bright future for my son.
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I cannot say enough about how amazing FRAXA is! They are committed to their mission of moving forward research to develop/discover more effective treatments and ultimately a cure for Fragile X. As a donor, I appreciate the organization’s stewardship in managing and making the most of the funds they receive. As a volunteer, I feel connected to and appreciated by the organization’s staff. As a mother of a son with Fragile X, I am eternally grateful for all of the important work they are doing!
I have recently gotten to know many of the team that runs FRAXA and I am so impressed. Their commitment to their mission and their transparency surpasses other nonprofits I support. They are good stewards of my donations.
FRAXA has given our family so much hope. We've reached out to their leadership for advice about medications and research trials. We are enrolling our teenage son in one and really excited about the potential. FRAXA helped designed this trial and funded its early phases. If they hadn't built relationships and expertise like they have, we wouldn't have access to groundbreaking studies like this one. We are so excited.
FRAXA is focused on finding effective treatments and ultimately a cure for Fragile X syndrome. Having two boys with Fragile X this organization gives me great hope for the future. Funded projects have led the way to current Fragile X clinical trials that have shown promising results in early stages and hopefully will result in the first treatment specifically for FXS.
Additionally, the efforts they've put into World Fragile X Day has raised awareness and shines a light on the progress of research for Fragile X syndrome.
FRAXA is a wonderful organization that gives our family so much hope. Our son was diagnosed with Fragile X at 22 months and seeing all the amazing research FRAXA supports is truly amazing!
I had a wonderful experience volunteering for FRAXA Research Foundation. Everyone on the team is great to work with and so helpful. The work this organization is doing is so important and they are leading the way for more research and eventually a cure. I look forward to continuing volunteering and helping spread awareness for a great cause!
My son, Taylor, was diagnosed with Fragile X nearly 24 years ago now. Much if the world saw how the cutting edge, breakthrough technology for Cornavirus vaccines and treatments could be life altering. FRAXA is the engine that is driving the work that could lead to treatments for Fragile X. This has been a great source of hope for our family as we imagining the day when Taylor is able to communicate better and do much more for himself. This research is a win-win for us all!
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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.
FRAXA Research Foundation has provided a lifetime of support to my family and others alike through its uncompromising dedication to finding treatments and a cure for Fragile X Syndrome. I feel fortunate to have grown so close to its co-founders, Katie and Mike, who work tirelessly to drive FRAXA's valiant efforts since its conception in 1994. It has been an honor to have witnessed first-hand the direct impact FRAXA's progress has made on both my family and others impacted whom it has forever brought into our lives. I look forward to the continual, inspirational growth on the road ahead alongside our FRAXA Community.
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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.
When my son was diagnosed with Fragile X syndrome in 2003, FRAXA Research Foundation immediately caught my attention. I spoke with Katie Clapp shortly after our diagnosis and was immediately drawn to her commitment. Their focus and dedication to finding effective treatments and ultimately a cure for Fragile X syndrome is what all of us as parents want. Watching an organization that is run by parents, like myself, make such a tremendous impact in research has always been amazing to me. No one is more dedicated to making change happen than parents who watch the struggles their child(ren) face each day. My son has participated in FRAXA-funded research and will continue to do so. We all want the same thing and FRAXA will be the reason that effective treatments and ultimately a cure is found for Fragile X syndrome.
The work and dedication of the team at FRAXA is critical to advancing research-based outcomes for our loved ones living with Fragile X Syndrome. FRAXA is a highly efficient organization, at the forefront of research in this field. We are beyond grateful for them, and the researchers they support through their grants.
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FRAXA Research Foundation was a beacon of hope to our family when our son Niklas was diagnosed at 14 months old. While Niklas is now 23 years old, we continue to be proud supporters of FRAXA Research Foundation. Together our family has been fortunate to raise over a million dollars while increasing awareness of FRAXA through the generosity of family and friends who continue to support this cause.
great combination of mission oriented and scientific minded, with focus on finding both near term and long term solutions to Fragile X.
My family has been involved in the the work of FRAXA for over 2 decades. They are a great organization that funds research striving to find treatments and a cure for Fragile X. Their work brings hope to so many families.
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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.
Having 2 grandsons with Fragile X I would like to help them in any way I can. With the support of Fraxa I feel encouraged and motivated. Fraxa is very helpful with their videos.
FRAXA continues to do a great job in supporting the Fragile X Community and drive ways to fund new research. Always a pleasure to work with the FRAXA Team!
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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!
This organization has been with us since we first learned of our child's disability (actually, it was identified very nearly to when we heard the diagnosis - they were the first to acknowledge it).
The support of this grass-roots group gave us the hope we needed. They filled in where we felt devastated.
But most of all, they never wavered from their mission: to find a cure for fragile x syndrome, which is all we wanted. We didn't want to educate doctors or scientists; that was already being done. Our hope was a cure! And - they've stayed on task for thirty years, with hopeful research and continuing information about this devastating disability keeping us going the whole time.
We are grateful for their perseverance and dedication.
Extremely dedicated staff does a tremendous job of fundraising and raising the profile of a little known genetic condition causing autism.....The group of affected families receives much comfort from FRAXA by way of sharing of detailed medical information and real life experiences, allowing families to feel that there truly are others who can contribute to, understand, and relate to their personal stories....The professional and emotional support and sharing are unparalleled.
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Soon after our son was diagnosed with Fragile X Syndrome, we found FRAXA’s website and were immediately filled with hope. The research they have made possible through their persistence and determination is truly incredible! We will forever be grateful for their support and the positive impact they’ve had on our family! What an amazing organization whose team has the biggest hearts!
FRAXA is very devoted to their mission - finding effective treatments and ultimately a cure for Fragile X syndrome. They provide a great network of support for families across the country through their ambassador program. The ambassadors are family members and have their own experiences to share. Through this, they are able to help others. Truly a great organization.
Fraxa continues to support research and clinical trials to treat & find a cure for fragileX syndrome.
My son who is an adult with FM fragileX has participated in 2 trials,
and we are hopeful that we will see one of these drugs come on the market to improve his life.
I volunteered at one of FRAXA's events in Boston last year and like how they are working with research labs and pharma companies to find a cure for Fragile X. FRAXA is really active in the community and their mission is focused on research which is so important for a rare disease foundation.
What a wonderful community!! I feel so motivated and hopeful to find a cure. FRAXA always updates us with latest News, trials and super fun events! We feel so important in this community and blessed to have met some awesome people!
Our son was diagnosed with Fragile X 30 years ago. Since that time, FRAXA has been a source of information, guidance and, yes, hope. We can’t imagine helping our son live his best life without the great information we receive from FRAXA.
When two of our 3 sons were diagnosed with Fragile X Syndrome 20 years ago we were devastated and unsure what the future would hold. Fortunately we found FRAXA early on and discovered a path for action. We were attracted to FRAXA because it was run by parents of kids with FX and they had a reputation of bringing families and researchers together. And to top it off, they were proven to be fiscally responsible.
We wanted to help find a cure (or effective treatments) for our sons so we, along with other local families, starting hosting fundraisers for FRAXA and have continued for the past 18 years. The team at FRAXA is so supportive and helpful. Many of them have traveled to attend our bigger events. I feel that we have a partnership in working toward a common goal.
I am happy to report that both our sons and FRAXA's progress are thriving! Now, I can't wait to see what the future brings.
We have known FRAXA for over 20 years, soon after our children were diagnosed. The greatest gift that Katie, Mike and the staff at FRAXA give us is HOPE. Hope that one day, the research will address the symptoms and maybe even cure Fragile X. Their tireless efforts to bring talented researchers together to collaborate on this disease never cease to amaze us! This is truly a marathon, not a sprint, but we are hopeful the race will be won!
FRAXA is an excellent organization that truly leads the way for Fragile X research. They have very low overhead costs and you know your contributions are going straight to research. They are the outside-the-box thinkers that are community needs because they don't constantly look to the Fragile X community to fund their efforts. Through creativity, they are raising dollars, connecting researchers with biotech companies, and spreading awareness among people who may not ever hear the words Fragile X otherwise. They are an incredible team, with a clear vision, and a singular purpose.
No bloat. They really watch every dime. And, they produce impressive results. There is hope for a real treatment and it's in large part due to the work of FRAXA
My cousin has Fragile X and our family has been proud to support FRAXA for many years. They give us hope that someday there will be a cure for Fragile X.
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.
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.
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!
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.
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 !!
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.
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!
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
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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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.
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.
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!
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.
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.
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.
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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.
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.
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
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.
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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!
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
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.
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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
"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
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.
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.
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.
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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.
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!
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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.
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!
Our daughter, who is now 19, was diagnosed at 2 which is when we were introduced to this remarkable organization. We have been blessed by the support of FRAXA, led by Katie Clapp and Michael Tranfaglia. FRAXA's mission is single focused on finding a cure for FragileX. I know they will find a cure in the not to distant future.
Fraxa has been a wonderful support to my family in learning of both of my nephews recent diagnosis of FragileX ... It was the first page that I went to for information and guidance and they have been nothing but supportive and professional to the common mission that we all share .. To find a cute for Fragilex ... Thank you
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.
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.
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.
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!
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.
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.
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.
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.
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!
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.
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.
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.
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.
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!
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.
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.
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.
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.
kclapp 09/30/2014
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
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.
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!
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!
Fraxa never ceases to amaze me. It is a highly professional organization that maintains a personal, human touch.
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.
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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.
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!
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.
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.
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
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.
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.
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.
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!
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.
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.
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
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
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.
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.
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.
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