FRAXA Research Foundation
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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 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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