Our Organization

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 been In Pursuit of a Cure, supporting 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. We eventually expanded our funding worldwide, searching out the most promising researchers and studies. Although there now exists an impressive number of researchers supporting FSHD research, there are even more projects that need to be funded in order to accelerate the goal to develop a treatment or cure.

Our Board has remained purely all-volunteer, and through the help of donations by local businesses, we have been able to devote 100% of your donations to furthering research. The cost of the annual auction (our largest fund raising event) is supported again by local business donations and a portion of the ticket sales, meaning that every penny raised during the auction goes directly to research.

The impact of your support

Make no mistake about it, your donations are very much an investment in the search for a cure. And because of the investments of our generous supporters over the last decade, we have achieved unprecedented progress on our understanding of FSHD.

  • 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. 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.