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October 1, 2013

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October 1, 2013

Great organization working to support research and events . really the only source of hope for many individuals living with muscular dystrophy.

FSHD takes it all except hope!

keep the dream alive guys..

Ways to make it better...

If I had to make changes to this organization, I would...

connect the individuals with the researchers directly.

More feedback...

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2013

June 2, 2010

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June 2, 2010

Terry and Rick Colella, with the help of family and friends, organized Friends for FSH Research, a non-profit organization to move research on Facioscapulohumeral Dystrophy (FSHD) forward. Their son Brian was diagnosed with this affliction when he turned 16. Prior to that time, he was an avid athlete who rowed crew and played soccer, basketball and baseball. Like many boys his age, he had dreams of playing for his hometown Seattle Mariners or competing in the Olympics as his father, Rick (‘72 & ‘76 Olympics, bronze medalist), and aunt, Lynn (‘72 Olympics, silver medalist), had before him. But Brian and his family began to notice that he was developing odd physical limitations, including an inability to lift his arms above his shoulders. This was significantly curtailing his athleticism and affecting his life in many other ways. To say that this diagnosis was a shock for the Colellas is an understatement. As a youngster Brian had rarely been sick, but now physicians told him that he had a condition for which there was neither treatment nor cure. This prognosis was heartbreaking and completely unacceptable to the Colellas. “This is our son, whom we love with all our heart, We couldn’t sit back and do nothing. We couldn’t just wait.” Prior to the creation Friends of FSH Research, FSHD had long been overlooked and ignored by other research-funding agencies. But now that is beginning to change. Since 2005, Friends for FSH Research has held an annual fundraising event, thus far raising more than one million dollars, 100 percent of which goes to funding FSHD research. Terry and Rick’s leadership, compassion, commitment and unflagging energy have helped to create an organization with the singular focus of funding researchers in their efforts to decode the genetic mysteries of FSHD so that a treatment or cure can be developed within our lifetimes. Mr. and Ms. Colella, their son Brian, and their entire family have been courageously facing this new reality and, by sharing their story, they are truly making a difference. They and Friends of FSH Research are furthering research into this devastating condition, giving new hope, and working to restore the dreams of those affected by FSHD.

The Great!

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

I watched some of videos that have been created showing the challenges that those afflicted with this condition have and I was tremendously moved.

Ways to make it better...

If I had to make changes to this organization, I would...

Help them get their good work known nationally, maybe start chapters in cities across the country and beyond as this is a global health issue that needs much more attention.

More feedback...

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

The genuine caring and open hearted concern and commitment to making a difference.

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

All of the people involved were more than 100 percent enthusiastic about the mission and creating a wonderful fundraising event.

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

It could truly make a bigger difference and fund the necessary research to find a treatment and ideally a cure for this devastating condition.

Ways to make it better...

Not sure it could have been better.

In my opinion, the biggest challenges facing this organization are...

The biggest challenge is raising more money at a time when the economy has had setbacks. Ideally there would be a way to expand to a national platform to more expediently accomplish their goals and objectives.

One thing I'd also say is that...

The videos I saw about FSHD were both riveting and emotionally compelling and would recommend to anyone as a backgrounder on this condition.

How frequently have you been involved with the organization?

About once a year

When was your last experience with this nonprofit?

2010

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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.