Lululemon founder investing $100M to help cure rare degenerative disease

Chip Wilson, founder of athleisure giant lululemon, is giving $100 million of his multibillion-dollar net worth to aid in finding a cure for facioscapulohumeral muscular dystrophy – FSHD – a rare disease Wilson was diagnosed with in 1987 when he was 32 years old.

According to the Muscular Dystrophy Association, facioscapulohumeral muscular dystrophy is “a genetic muscle disorder in which the muscles of the face, shoulder blades, and upper arms are among the most affected.” Facioscapulohumeral muscular dystrophy is the third most common muscular dystrophy diagnosis, a diagnosis which – no matter what type a person has – causes muscles to weaken and degenerate over time; FSHD affects a little less than 900,000 people globally.

However, Wilson suffers from FSHD2, a less common diagnosis than FSHD1, which impacts only 5% of those who have the disease (making Wilson one of about 43,000), according to Bloomberg. While Wilson has maintained an active lifestyle years after his diagnosis, he had a “wake-up call” that occurred while meeting with Anta Sports Products, China’s biggest athletic-apparel maker; it was during that time that he found himself struggling to walk.

As of 2021 I am 66 years old and many of my muscles have turned to fibrous tissue and fat. My upper body is very wasted, and as of two years ago, two key muscles in my legs turned to fat. I can walk but I must be very intentional and present, or I will trip and fall. If I extrapolate to 2030, I will be unable to walk on my own.

solvefshd.com/stories

Fast forward to 2022, and Wilson went the philanthropic route, founding and helping fund SOLVE FSHD, whose mission is to “solve FSHD2 while further benefiting FSHD1.” SOLVE FSHD has, since its inception, donated close to $31 million to various companies and organizations working toward the eradication of FSHD. Now, Wilson is investing $100 million of his own money into SOLVE FSHD.

Wilson says:

I am not a complainer and I refuse to take my condition lying down. I know there is no performance in life without action. The action I have taken is to commit a great amount of my wealth to eliminating bottlenecks in science. I want to provide speed to a cure, or solve muscle regeneration. My personal motivation will spill over to the many others with Muscular Dystrophy. Thanks for coming along on my journey to live forever or to die trying.

solvefshd.com/stories