If Chip Wilson isn’t a name you recognize, I’m confident you’ve heard of Lululemon. Lululemon is the activewear company that Mr. Wilson built.
Born in the U.S., but educated and living in Canada, he’s a billionaire who is using his money to find a cure for facioscapulohumeral muscular dystrophy (FSHD) – a rare disease he has been living with for over 30 years. Mr. Wilson made the news not long ago when he said he was donating $100 million to find a cure for FSHD. The money will fund a new venture called Solve FSHD and its goal is to find a cure in five years.
According to the website, “through further investments in biotech and biopharma companies working on small molecule, RNA, DNA, gene-editing and/or cell-based therapeutics, we will share in the risk of drug development to accelerate finding a cure for FSHD.”
Muscular dystrophies are a group of muscle diseases caused by mutations in a person’s genes. Duchenne muscular dystrophy (DMD) is another rare disease that causes progressive muscle degeneration, but research is getting closer to helping this group of patients.
Promising regenerative research is happening to treat boys with DMD – the largest patient group – and pharma giant Pfizer is working on a gene therapy that would be a permanent treatment (“one and done”) while Sarepta Therapeutics is hot on Pfizer’s heels. You can read about the progress so far in blogger Tara Fernandez’s update.
It’s not unusual for research into diseases to progress due to the efforts of wealthy benefactors. There are dozens of examples of billionaires committing a portion of their wealth to health. Chip Wilson’s donation, to fund a cure for his own affliction, is somewhat rarer, but large donations made to a hospital or a health charity, in the name of a loved one who succumbed to a particular condition, can be seen all around us – especially on the names of hospital wings.
Then there are the “regular people” who make it their mission to fundraise to save a family member, often a child, with a rare disease. A Cure for Ellie is raising funds and awareness for LBSL, a rare genetic disorder that affects the brain and spinal cord. If you visit the NORD website, you’ll find hundreds of sites like the one for Ellie. Unless these individuals and families can raise the funds for medical research to support a researcher’s efforts, they fear that “their” rare disorder may get ignored with sometimes fatal consequences.
The public also uses crowdfunding to fundraise for medical expenses that they can’t afford, either because it’s not covered by their insurance or they simply don’t have any. As well, Canadian patients sometimes travel to the U.S. for procedures not covered by our health-care system and they are required to pay out of pocket. In those situations, crowdfunding could be seen as a community service that is filling a gap, but the larger issue is the lack of access to health care.
We also know patients seek unapproved stem cell treatments from clinics in foreign countries and use crowdfunding to support it. There are problems with pursuing these avenues (not least of which are the issues surrounding stem cell tourism). While it’s tempting to open your wallet to help someone in need, crowdfunding for medical treatments opens up a host of problems that Jeremy Snyder, a professor at Simon Fraser University, outlines in this STAT article.
In a perfect world, no one would ever get sick or there would be free treatments or cures available to all. In this world, Chip Wilson is putting his considerable wealth and business acumen behind manifesting his own cure. If he’s successful, that will be a great legacy. Listen to how he describes his plans in this video.
Stacey Johnson
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