Rare Daily Staff
Chip Wilson, founder of the athletic-inspired apparel company Lululemon, has committed $100 million to find a cure for his rare disease, facioscapulohumeral muscular dystrophy type 2.
Wilson was diagnosed with facioscapulohumeral muscular dystrophy type 2 (FSHD2) at age 32. The Canadian entrepreneur and venture philanthropist has created a new venture, Solve FSHD, with the objective of finding a cure for FSHD by 2027 by targeting the underlying genetic cause or improving muscle function and growth.
“Solve FSHD will accelerate the underfunded development of drugs and therapies to stop muscle degeneration, increase muscle strength and improve the quality of life for those living with this,” said Wilson in a statement. He stopped playing squash 10 years ago because he could no longer lift a racquet over his head.
At 67, the serial entrepreneur and father of five boys said his upper body is “very wasted.” His legs have lost significant muscle tissue and Wilson can see a time in the not-so-distant future when he will need the assistance of a wheelchair.
“I can still walk, but I must be very intentional and present, or I will trip and fall,” he said. “I do see a day when I will be unable to walk on my own.” said the Canadian entrepreneur and venture philanthropist.
Currently, there is no cure for FSHD, a genetic disorder that has varying symptoms, severity, and progression. According to the Mayo Clinic, muscle weakness usually starts in the face, hips, and shoulders. Onset usually occurs in the teenage years but can begin in childhood.
“It’s one of the most prevalent adult muscular dystrophies. The investments of Solve FSHD now to help
validate biomarkers and develop new therapies will pay dividends later for any company or researcher pursuing better therapies for FSHD. These investments form the foundation to support future clinical trials and serve as a seed for further funding and investment,” said Jeffrey Statland, assistant professor of Neurology at the University of Kansas Medical Center. Statland has conducted clinical and research training in neuromuscular diseases, with a primary interest in FSHD.
“Solve FSHD will support projects that normally wouldn’t receive funding, including bottlenecks in the pipeline and thereby accelerating the development of clinical trials and novel therapies. We can move quickly and pursue multiple projects simultaneously,” Wilson said.
Scientists, biotech and biopharma companies, muscular degeneration specialists and other researchers working in similar muscular dystrophy fields are all encouraged to contact Solve FSHD. Solve FSHD is seeking to fund or invest in potential research partners, companies, and clinicians interested in advancing related research and clinical trials.
Solve FSHD also wants to hear from those with FSHD or who suspect they may have it, who can help by volunteering to join a contact registry for clinical trials.
Photo: Chip Wilson, founder of Lululemon