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June 2, 2010

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June 2, 2010

The Pacific Northwest Friends of FSH has raised and distributed funds to increase research in the cause and ultimately the treatment of facioscapulohumeral dystrophy. Through pilot project funding as strategic support of critical research bottlenecks, the Friends of FSH has fostered the development of a large research collaborative group that includes researchers in the pacific northwest as well as national and international FSH researchers. The foundation has made a tremendous impact on developing a path forward in this difficult disease. Tell your story here and help others understand this charity

The Great!

I've personally experienced the results of this organization in...

I have personally witnessed the impact on the research community that this organization has made.

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How frequently have you been involved with the organization?

About every six months

When was your last experience with this nonprofit?

2010

November 18, 2009

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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.

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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 20, 2009

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October 20, 2009

This charity is run by Terry Colella and her vast army of volunteers. Their group has been doing this for 6 years now without taking a penny in salary for the hundreds of hours of volunteer work. I have the disease and this really gives me hope. Every dollar is important for research but also important for the souls of thousands of muscular dystrophy patients. Please help us find a cure. On behalf of all of us that have trouble rolling out of bed every morning because our muscles have faded too much... Thanks for donating!

The Great!

I've personally experienced the results of this organization in...

2005 2006 2007 2008 2009

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What I've enjoyed the most about my experience with this nonprofit is...

100% of the money goes towards research. Mnay other charities have high paid CEO's and Officers. This one is different. All of the cash donated goes towards a cure.

The kinds of staff and volunteers that I met were...

Generous, courteous and friendly.

If this organization had 10 million bucks, it could...

Fund a major research study.

When was your last experience with this nonprofit?

2009

October 5, 2009

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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...

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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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5 tips for getting reviews...

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3 hours of volunteer time for this nonprofit will...

Help write letters

Talk to friends & tell others about this condition.

Ask their favorite restaurants, shops to donate an item or gift certificate for the annual fund raising auction.

Write a letter to their Senators asking for increased NIH funding for FSH research.

Make a donation to Friends of FSH Research.