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Nonprofit Overview

Causes: Birth Defects & Genetic Diseases Research, Health, Nerve, Muscle & Bone Diseases Research

Mission: There is no cure or treatment strategy for patients with FSH Muscular Dystrophy (FSHD). This debilitating disease slowly consumes skeletal muscle, robbing people of the active, healthy, and independent years of their lives. For over a decade, Friends of FSH Research (Friends) has supported research studies that have contributed to our understanding of FSHD, offering the hope of treatment to the over 500,000 people living with the disease. Friends was started by the family and friends of Terry and Rick Colella, whose son has FSHD. The goal of the organization was to stimulate research on FSHD in the Pacific Northwest. By reaching out to investigators at the University of Washington, Seattle Children’s Hospital, and the Fred Hutchinson Cancer Research Center, we were able to provide seed monies for projects that would ultimately attract over $15 million dollars in funding. Although there now exists an impressive number of researchers supporting FSH research, there are even more projects that need to be funded in order to accelerate the goal to develop a treatment or cure.

Results: * Scientists have reached a consensus on the root cause of FSHD and have identified two molecular targets for intervening with the disease. * Platforms have been developed for lead compound identification and scientists are now performing massive experiments to look for compounds that interfere with the disease. * Other strategies, including viral gene therapy, are also showing great promise. * Preclinical models of the disease have been developed, and are being used to test lead compounds and strategies. * Clinical trial endpoints are being established so we know, when we find a therapy, whether it will work or not.

Target demographics: accelerate a treatment or cure for FSH Muscular Dystrophy

Direct beneficiaries per year: 3+ researchers

Geographic areas served: Seattle, Washington

Programs: The mission of Friends of FSH Research is to accelerate the discoveries that will lead to treatments or cures for FSHD. To achieve our goal, we actively manage a portfolio of research that supports a pipeline for drug discovery. Our board, staff, volunteers, and world-class scientists are fully committed to transparent, reproducible, and transformative science that will inspire hope for people with FSHD.

Community Stories

14 Stories from Volunteers, Donors & Supporters

General Member of the Public

Rating: 5

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..

Lynn30

Donor

Rating: 5

I have worked with FSH for many years now. Having done years of events and fundraising, Terry and Rick reached out to me when they first started this charity years ago. I have been a donor and volunteer for many years. I can tell you that there is not a group of people that work harder to make their event a success and reach out to anyone they can for help. I asked once "how do you keep doing this" knowing year after year of putting events on is brutal work and Terry said "it's our son". They are searching for a cure and helping so many people in the WORLD along the way...not just their son. They are awesome people and doing great things.

9

Donor

Rating: 5

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.

Review from Guidestar

12

Volunteer

Rating: 5

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.

1

Volunteer

Rating: 5

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.

7

Professional with expertise in this field

Rating: 5

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.

8

Volunteer

Rating: 5

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.

8

Volunteer

Rating: 5

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.

7

Volunteer

Rating: 5

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.

1

General Member of the Public

Rating: 5

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.