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Chip Wilson commits $100 million to fight the disease FSHD

The Lululemon founder has facioscapulohumeral muscular dystrophy (FSHD) and foresees one day needing to use a wheelchair
Chip Wilson founded Lululemon Athletica Inc. | submitted

Vancouver billionaire, and Lululemon Athletica Inc. (Nasdaq:LULU) founder, Chip Wilson has committed $100 million to fight the degenerative disease known as facioscapulohumeral muscular dystrophy (FSHD), and create a new organization named Solve FSHD.

Wilson, now 67, was diagnosed with FSHD when he was 32 years old. He said his upper body is "very wasted," and his legs have lost significant muscle tissue. 

Wilson foresees a time in the not too distant future when he will need to use a wheelchair, he said.

“I can still walk, but I must be very intentional and present, or I will trip and fall," said Wilson. "I do see a day when I will be unable to walk on my own.”

Solve FSHD's mission is to accelerate research into new therapies and find a cure for the disorder by 2027.

Wilson explained at a March 8 press conference that his whole life has been about athletics. 

"From an athlete's point of view, a decrease in muscle ability is highly recognizable – even a drop of 2 per cent strength I can notice right off the bat, while maybe the normal person isn't [able to notice that,]"

"I'm not saying it's like Muhammad Ali with Parkinson's [Disease,] but boy, I feel sometimes like – being a high-level athlete and then being taken down with this – it's not what I saw for myself."

FSHD is a type of muscular dystrophy in which there is progressive muscle degeneration, and weakness, leading to an inability to lift objects. People with FSHD can have trouble grooming themselves or walking on their own. 

It gets its name from the parts of the body that it affects the most. The progressive loss of skeletal muscle, where weakness is most noticeable is across the face (facio), back (scapula) and upper arms (humeral.)

The rare disease is said to affect fewer than 5,000 people in Canada.

Forbes' daily updated estimate for Wilson's wealth is about US$4.8 billion, according to its website this morning. 

He still owns a significant stake in Lululemon, despite not being active in management or on the board in years. He also has a significant holding in Amer Sports, which owns brands such as Arc'Teryx. His Low Tide Properties owns real estate in Vancouver and other cities.

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