When her son was diagnosed with facioscapulohumeral (FSH) muscular dystrophy and the doctor told her that the best option was yearly monitoring of the condition’s effects, Terry Colella, who is a nurse, was dismayed.
“I’m a nurse, so part of me is like, ‘What are you going to do to help my son?’” Colella said, acknowledging that delivering that kind of message must’ve been hard for the doctor as well.
She was further discouraged when she found out there was no major organization in the area dedicated to researching that disease, which is noted for its loss of muscle in the face, scapula and humerus (arm), as she wanted to hold an auction fundraiser to benefit such an organization.
But Colella didn’t let those roadblocks get in her way. Instead, the Kirkland resident started her own nonprofit, Friends of FSH Research.
“I thought, ‘If we didn’t do it, who would?’” Colella said. “I went online and figured out how to start a nonprofit with a 501c3 status.”
She had never thrown an auction or started a nonprofit before, but with the help of family, friends, other nonprofit organizers, Fred Hutchinson Research Center, Seattle Children’s and University of Washington Medicine staff and a helpful IRS employee, she started a nonprofit that is still thriving 13 years later.
“I had the right people at the right time,” Colella said. “Everything was falling in line.”
In the first year, Friends of FSH Research raised roughly $200,000, with $189,000 coming from the auction, according to Rick Colella, Terry’s husband.
“That was definitely success enough to keep going,” Rick said.
In total, the organization has funded more than $3.2 million for research on FSH muscular dystrophy, which is considered a rare disease.
“We had never heard of FSH before this,” Terry said.
In their contracts to fund the research, the nonprofit takes strides to ensure that researchers are collaborating and sharing information with similar researchers around the world.
“Collaboration really makes the money go a lot further,” Terry said. “As many partnerships as they can build, the better.”
With support from Friends of FSH Research, researchers in Seattle, Rochester, N.Y., and Leiden, Netherlands, worked together to secure a $6.3 million grant from the National Institutes of Health (NIH).
“It was our whole plan to fund something like that,” Rick said.
Through that research, the definitive cause of FSH was determined, which was previously narrowed down to a few different possibilities.
“It was a huge breakthrough,” Rick said.
Terry’s hope is that one day, a family will hear a FSH diagnosis followed by a treatment plan rather than the suggestion of only yearly checkups.
“Hope is our thing,” she said. “That’s why we keep going. … One day, the doctor’s going to have a much better thing to say.”
For more information about Friends of FSH Research, visit fshfriends.org. The 2018 “FiSHing for a Cure” Auction is scheduled for Jan. 27 at the Hyatt Regency Lake Washington at Seattle’s Southport.