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.
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!
Working with FRAXA for the last 10 years has been a great experience as Katie's team stays laser focused on those affected with Fragile X. Running an annual FRAXA golf tournament takes a solid commitment from an entire team of volunteers, donors, players, sponsors and most of all the support of the nonprofit. FRAXA's continuous support has really helped my nephew grow from a boy to being THE MAN! And that sense of accomplishment resonates throughout the entire organization. Thank you FRAXA!
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.
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.
FRAXA is the hope for all those affected with Fragile X and their families. The organization is singularly focused on funding research to cure Fragile X. It is very efficient in terms of using donor funds in putting it towards research--a cut above most other organizations funding medial research. The organization is able to sollicit excellent research proposals from research community and has a spectacular record in funding most promising avenues towards a cure. It is examplary in its collaboration with parents and families of those affected by Fragile X, researchers and the scientific community, pharma companies. FRAXA is the hope--and promise--of a Fragile X cure.
Review from CharityNavigator
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.
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.
FRAXA continues to be the one and only organization I see moving the ball towards a cure for Fragile X Syndrome. Please join FRAXA in their quest for a cure!
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.