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.
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
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.
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!
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.