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.
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.
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.
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!
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.
Fraxa is one of the most efficient nonprofits out there. The research they fund and their ability to impart knowledge is changing the lives of all who live with Fragile X.
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.
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.
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 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.
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 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.
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.
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 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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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!
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.
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.
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.
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.
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!
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.