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.
"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 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.
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
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.
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.
FRAXA Research Foundation really goes the extra mile to educate the public about Fragile X Syndrome. They have wonderful informational brochures, e-newsletters.
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.
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.
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.