Pacific Northwest Friends of FSH Research
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November 18, 2009
I used to have my own nonprofit to serve this very need, but ran into Terry & Rick's organization. I quickly decided that they did a much superior job, with almost the same goals. Finding a cure is the objective, not perpetuation of the organization. Dollars donated are used for that purpose, not administration.
The Great!
I've personally experienced the results of this organization in...
Funding new researchers at the Hutch.
More feedback...
The kinds of staff and volunteers that I met were...
Totally committed to the goal of finding a cure.
If this organization had 10 million bucks, it could...
Fund some much-needed research that has been proposed, but which funds are lacking that could provide crucial answers.
When was your last experience with this nonprofit?
2009
October 5, 2009
This organization is entirely staffed by volunteers and was started by an incredible family in the Seattle area with the disease in their family. Fundraising occurs throughout the year through business partnerships and various individual contributions but the highlight is an annual charity auction attended by hundreds of supporters and sponsors. Facioscapulohumeral Dystrophy (FSHD) is a particularly insidious disease which results in the gradual loss of muscle throughout the victim’s life. There is no cure. This organization’s focus is on research and has a strong partnership with the University of Washington’s muscular dystrophy research center. FSHD receives a disproportionate share of national funds available for muscular dystrophy research and this organization does it’s best to try to fill some of that void. As a family with this disease, we are thankful and grateful for the contributions of this worthwhile charity. We pray that our son will benefit from a cure during his lifetime.
The Great!
I've personally experienced the results of this organization in...
A whole lot of volunteers putting in a whole lot of hours for, hopefully, a whole lot of research.
Ways to make it better...
If I had to make changes to this organization, I would...
More feedback...
What I've enjoyed the most about my experience with this nonprofit is...
The hope of a cure.
The kinds of staff and volunteers that I met were...
Incredible volunteers who contribute an large amount of their time for a cure.
If this organization had 10 million bucks, it could...
Work more effectively with researchers and organizations to find a cure.
Ways to make it better...
Need more contributors.
When was your last experience with this nonprofit?
2009
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