Pacific Northwest Friends of FSH Research
June 8, 2010
This is a wonderful organization! Their annual Silent Auction fundraiser raises hundreds of thousands of dollars to support FSH Muscular Dystrophy research. This organization has single handedly supported FSH Research at the University of Washington through it's efforts. Additionally, they have developed a wonderful video piece to increase public awareness about FSH Muscular Dystrophy.
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I've personally experienced the results of this organization in...
Their support of FSH Research and their increasing awareness of FSH Muscular Dystrophy. As a person with FSH, this organization gives me hope that someday there will be a treatment and/or cure.
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When was your last experience with this nonprofit?
2010
June 6, 2010
This organization has been very effective in its work furthering research into FSH. Because of the determination and motivation of its founders, Pacific Northwest Friends of FSH Research has been highy successful in raising more awareness about this form of muscular dystrophy, as well as raising significant funds for research.
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I've personally experienced the results of this organization in...
Seeing how effectively the organization is run.
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How frequently have you been involved with the organization?
About once a year
When was your last experience with this nonprofit?
2010
June 4, 2010
For the past 5 years, I have been a volunteer for the Pacific Northwest Friends of FSH Research organization. I have watched the Colella family work tirelessly throughout the year, promoting the organization's message, organizing the annual Dinner Auction, and collaborating with medical investigators to pursue treatments and ultimately, a cure, for this horrific disease. They have addressed all aspects of what a non-profit organization needs to do to organize, grow, and prosper. They are, in my opinion, the gold standard for other non-profits who hope to accomplish miracles.
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I've personally experienced the results of this organization in...
the successful annual auction, earning large sums despite the economic downturn of the last 2 years.
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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
June 2, 2010
Terry is a former neighbor and oontacted me to help them at the beginning of their fundraising efforts. I helped get them focused on what makes a successful auction. They took my ideas and the ideas from many others and created a very successsful event. They are hugely dedicated and as anyone in fundraising knows...a small group does the majority of the work. Please reward them with this bonus as very few people would put the kind of committment in that they have to make a difference for any cause.
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I've personally experienced the results of this organization in...
Attending the events, helping with the events and knowing the research that has happened due to their efforts...one family making a HUGE difference!!
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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
June 2, 2010
This charity was started to raise money for research about a form of muscular dystrophy that affects my brother. There was little research being conducted prior to Friends of FSH, and now so much is being done. I continue to support their efforts, and hope that all the research that is now being done can continue until we have a cure.
The Great!
I've personally experienced the results of this organization in...
The hope it has brought to so many people afflicted by FSH muscular dystrophy like my brother.
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How frequently have you been involved with the organization?
About every month
When was your last experience with this nonprofit?
2010
June 2, 2010
The Pacific Northwest Friends of FSH Research is a relatively small but huge in impact non-profit begun by the family of a son with this type of muscular dystrophy. The Colellas found very little in terms of resources, help, research and knowledge about this disease which is more common than you might think. Out of their frustration with the existing situation some 6 plus years ago, they formed the FSH organization and operated out of their own home. Their dedication to this cause has had a tremendous impact on the amount of attention this disease is now receiving and on the amount of research dollars available to look for a cure and/or treatment for the condition. The operation of the organization is bare-bones with very little overhead and lots of energetic volunteers. It is amazing what this non-profit has achieved in a relatively short amount of time.
The Great!
I've personally experienced the results of this organization in...
my understanding of FSH type of muscular dystrophy.
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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
June 2, 2010
As a member of the family I want to add my praise and appreciation to Terry and Rick for their efforts in establishing this wonderful organization which is successfully raising funds to support the researchers at Univ of Washington and elsewhere to find a cure for this debilitating disease. Volunteers are needed to help them carry on this effort not just next year but until a cure is found. Researchers' findings will need to be put into action and into the market place available to all who have the need. Our dream would be that it would take place in Brian's lifetime.Thanks to all who are among the many supporters.
The Great!
I've personally experienced the results of this organization in...
As a participant in fund raising
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How frequently have you been involved with the organization?
About once a year
When was your last experience with this nonprofit?
2010
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.
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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
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
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
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