FRAXA Research Foundation
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March 19, 2013
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.
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Was your donation impactful?
Likely
How likely is it that you would recommend that a friend donate to this group?
Definitely
How likely are you to donate to this group again?
Definitely
When was your last experience with this nonprofit?
2013
March 19, 2013
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.
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Would you volunteer for this group again?
Definitely
For the time you spent, how much of an impact did you feel your work or activity had?
Life-changing
Did the organization use your time wisely?
Very Well
Would you recommend this group to a friend?
Definitely
When was your last experience with this nonprofit?
2013
March 19, 2013
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.
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Would you volunteer for this group again?
Definitely
For the time you spent, how much of an impact did you feel your work or activity had?
Life-changing
Did the organization use your time wisely?
Very Well
Would you recommend this group to a friend?
Definitely
When was your last experience with this nonprofit?
2013
November 7, 2012
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.
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How would you describe the help you got from this organization?
A lot
How likely are you to recommend this organization to a friend?
Definitely
How do you feel you were treated by this organization?
Very Well
When was your last experience with this nonprofit?
2012
November 6, 2012
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.
More feedback...
Would you volunteer for this group again?
Definitely
For the time you spent, how much of an impact did you feel your work or activity had?
Life-changing
Did the organization use your time wisely?
Very Well
Would you recommend this group to a friend?
Definitely
When was your last experience with this nonprofit?
2012
November 6, 2012
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.
More feedback...
Would you volunteer for this group again?
Definitely
For the time you spent, how much of an impact did you feel your work or activity had?
Life-changing
Did the organization use your time wisely?
Very Well
Would you recommend this group to a friend?
Definitely
When was your last experience with this nonprofit?
2012
June 9, 2011
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.
The Great!
I've personally experienced the results of this organization in...
seeing the quality and quantity of research gains and how this delivers on their mission for their constituents.
Ways to make it better...
If I had to make changes to this organization, I would...
Expand the publicity and awareness of their work.
June 8, 2011
FRAXA began in 1994 with a dream of curing Fragile X -- now fast forward to 2011 -- there are currently clinical trials for medications to treat the core deficits of Fragile X going on in several centers around the country. Moonshot to the mind is the next frontier in medical research. Being a single gene disorder makes Fragile X a great model for other disorders of the brain as well, and could ultimately lead researchers to treatments for possibly autism, Parkinson's and Alzheimer's. FRAXA is an extremely efficient organization, and the people who are involved with FRAXA are totally committed to this cause. If you want your charitable dollars to really make a difference in the world, make a donation to FRAXA. My son is 14 years old and has Fragile X, and FRAXA gives me great hope that there will be medications in his lifetime that allow him to be happy and self-sufficient.
The Great!
I've personally experienced the results of this organization in...
I hope to get my son involved in some of the clinical trials currently or soon to take place so we can see first hand the benefits of the drugs FRAXA has been nurturing along for years now. FRAXA is gaining recognition as the model for a cure-oriented charitable foundation.
Ways to make it better...
If I had to make changes to this organization, I would...
Much work still needs to be done. Just like AID's, treating Fragile X will mean a cocktail of medications. The brain is very complicated so the basic research continues for the next components of the cocktail. Funding and great research will help FRAXA reach it's goal.
June 8, 2011
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.
The Great!
I've personally experienced the results of this organization in...
Minocycline has been the first breakthrough for Fragile X that was a result of FRAXA fudning. In addition, the research FRAXA sponsored has now brought us to two drugs being in late Phase II/Phase III trials--with a hope of a disease-modifying drug on the market in 2012.
Ways to make it better...
If I had to make changes to this organization, I would...
Fund it more--it would speed the race to the cure for Fragile X.
More feedback...
Will you volunteer or donate to this organization beyond what is required of board members?
Definitely
How much of an impact do you think this organization has?
Life-changing
Will you tell others about this organization?
Definitely
How did you learn about this organization?
Researched it on the Internet, spoke to families affected by Fragile X and scientist conducting research on Fragile X.
What is this organization's top short-term priority?
Increasing fudning for Fragile X research--so that effective treatments and a cure can be brought to all affected by Fragile X faster.
What is its top priority in the long run?
Curing Fragile X; that is a wonderful thing about FRAXA that it remains so focused and determined, unwavering in its pursuit of a cure.
When was your last experience with this nonprofit?
2011
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