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$100 million gift by Lululemon founder Chip Wilson to fund research for muscle disorder
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$100 million gift by Lululemon founder Chip Wilson to fund research for muscle disorder

The Vancouver billionaire and Lululemon founder, whose donation is among the largest philanthropic gifts in B.C. and Canadian history, says he was diagnosed with facioscapulohumeral muscular dystrophy at the age of 32

Chip Wilson, with wife Summer Wilson, recently announced that he has committed $100 million and created a new venture, Solve FSHD, with the objective of finding a cure for facioscapulohumeral muscular dystrophy (FSHD) by 2027.

Chip Wilson, one of B.C.’s wealthiest businessmen, is making a $100-million US commitment to fund research on facioscapulohumeral muscular dystrophy, a rare genetic disorder that leads to the weakening of muscles on the face, shoulder blades and upper arms.

The donation announced recently is among the largest philanthropic gifts in B.C. It will fully fund a new venture called Solve FSHD and its goal of finding a cure by 2027.

Wilson, who made his fortune selling yoga clothing as founder of Lululemon Athletica, was diagnosed with FSHD at age 32.

The 67-year-old had to stop playing squash 10 years ago because he could no longer lift a racquet over his head. He described his upper body as being “very wasted.”

“There has been a real downturn my last four months. I can walk for maybe an hour, an hour and a half, but I am listing to one side, and I look like an old man. If it continues this way, I suspect I will be in a wheelchair in seven or eight years,” he said in an interview.

Most cases of FSHD start in young people before the age of 20 when muscles around the eyes and mouth, shoulders, stomach, upper arms and lower legs start to atrophy, usually on one side only. There is currently no cure and treatment is focused on managing symptoms. The condition is estimated by the FSHD Society in the U.S. to affect 870,000 individuals worldwide, although the actual number may be higher due to undiagnosed cases.

The commitment by Wilson is of a magnitude that will make it a “game-changer,” said Neil Carmarta, a Calgary-based executive who was part of establishing the FSHD Canada Foundation around 10 years ago to fund more research toward a cure.

 “Over the years, the amount of money that’s been put to FSHD research has been maybe $5 million US a year (worldwide), and some years not even that much. You don’t find drug companies investing in it like COVID or cancer. Governments aren’t supporting it heavily because, again, there are not that many people with my disease. It’s a rare disease. It’s up to us to find a solution.”

His foundation had been pulling together about $1 million a year and investing in research. But it would be “$50,000 here and $100,000 there” to spur research done at universities in Canada, the U.S. and overseas

He said the timing is right for a move like this that will “add more spin on the ball. We are not drifting around trying to figure out what to do. We understand how the disease works and what causes it. … Now we got to find a solution. We’re doubling down on finding out how we are going to cure it.”

Solve FSHD will fund scientists, biotech and biopharma start-up companies and other specialists who want to conduct research and clinical trials in a way that moves the effort quickly beyond what Carmarta described as being “small bets here and there, drips and drabs.” It plans to offer a “prize” in the $30-million range to an individual or organization that succeeds in finding a cure.

Bloomberg’s Billionaire Index pegs Wilson among the 500 richest people in the world, with a net worth of $5.68 billion US. Lululemon Athletica is headquartered in Vancouver and listed on the Nasdaq exchange with a market cap of $36.88 billion US. Wilson no longer has a management role at the company, but continues to be one of the largest individual shareholders.

The size of Wilson’s commitment to fund FSHD research is comparable to a donation recently made earlier by Henry Kravis, the co-founder of New York investment company KKR & Co., who has a net worth of $11.5 billion, and his wife, economist Marie-Josee Kravis. They gave $100 million US to Memorial Sloan Kettering Cancer Center to study the relapse of cancer.

Wilson’s family charitable foundation, which is known as Wilson 5 Foundation and also headed by his wife, Summer Wilson, has in the past made donations to support land conservancy, park creation and the sharing of public art.

In September 2021, it made a $6-million donation to The Nature Trust of B.C. to buy a 2.8-hectare property at the mouth of the Englishman River in Parksville. It was the largest land conservancy gift the foundation had made to date. The foundation also made an $8-million contribution to fund the Chip and Shannon Wilson School of Design, focused on high-tech clothing at Kwantlen Polytechnic University. Lululemon also donated an additional $4 million to the school. In the arts, the foundation spent $1.5 million to keep the work of Chinese sculptor Yue Min-jun, “A-maze-ing Laughter”, on public display in English Bay. They also donated $250,000 to save the Trans Am Totem near Science World. The couple founded imagine1day and have poured about $20 million into building schools and supporting the education of girls in Ethiopia.

Photo: Chip Wilson, with wife Summer Wilson, announced  that he has committed $100 million and created a new venture, Solve FSHD, with the objective of finding a cure for facioscapulohumeral muscular dystrophy (FSHD) by 2027. PHOTO BY FRANCIS GEORGIAN /PNG

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