Chip Wilson, the visionary entrepreneur who fundamentally reshaped the world of athletic apparel with Lululemon, is now engaged in perhaps his most important challenge: a deeply personal fight against a rare and debilitating disease that is slowly eroding his muscles. It’s a journey that began decades ago, long before the iconic yoga pants and global brand took shape, and one that has now spurred him to commit a substantial portion of his vast fortune to finding a cure.
Wilson, known for pioneering the luxury athleisure market, was diagnosed with facioscapulohumeral muscular dystrophy, or FSHD, when he was just 32 years old in 1987. This incurable muscle – wasting condition, which is progressive, began impacting his lower back and contributing to posture issues. At the time of his diagnosis, he was far from the billionaire status he would later achieve.
Seeking relief for his back pain and muscle loss, Wilson turned to yoga. It was within the tranquil yet challenging environment of a yoga class in 1998 that inspiration struck, leading him to found Lululemon Athletica. The company quickly became synonymous with high – quality, form – fitting athletic wear, including the famous patented butt – hugging fabric he developed for yoga pants.
While Lululemon soared to become a global powerhouse, Wilson’s relationship with the company evolved. He stepped down from his leadership role in 2013 following public controversy over some of his remarks. Despite selling off most of his initial stake over the years, he remains the largest individual shareholder, with an estimated 8% ownership that contributes significantly to his current net worth, which Forbes estimates at $7 billion.
His journey since leaving Lululemon has included exploring new ventures and grappling with the reality of the company’s continued success without him. However, the increasing severity of his FSHD symptoms has brought a new urgency to his life. Muscle wasting worsened to the point where he found himself struggling with balance, unable to walk without the risk of falling over.
Despite this challenge, Wilson, now 67, maintains a remarkable spirit. He surprised one interviewer by jogging to their meeting, demonstrating his determination. He acknowledges that every step he takes requires conscious effort, a stark reality of living with the progressive disease that affects muscle strength in his face, back, and upper arms.
Recognizing his limited time and the accelerating impact of FSHD, Wilson had what he described as a “wake – up call” several years ago while finalizing a significant business deal. This moment seems to have galvanized his resolve to actively confront his condition on a much larger scale, shifting his focus from purely commercial pursuits to a mission of medical discovery.
In March 2022, he publicly revealed his diagnosis, a decision that coincided with the launch of a full – scale offensive against FSHD. He pledged the equivalent of $75 million to fund a new venture philanthropy organization he established, aptly named Solve FSHD. His ambitious goal for this initiative is nothing less than to stamp out the disease by 2027.
Solve FSHD operates with a clear mission: to accelerate the development of treatments and a cure for FSHD. The organization has already deployed nearly $31 million of Wilson’s pledged funds, directing them towards academics and entrepreneurs who are pursuing innovative ideas to slow the disease’s progression or halt it entirely. This rapid deployment reflects the urgency driving Wilson’s efforts.
Part of the strategic thinking behind Solve FSHD involves a belief that ultra – wealthy entrepreneurs like himself can serve as powerful catalysts for medical innovation. Wilson contends that they possess the financial resources to attract top talent and can approach research with a more results – driven mindset than traditional charitable or government organizations. He has openly stated his conviction that capitalism has “created everything good in the world,” a philosophy he now applies to the realm of medical research.
Solve FSHD has specifically highlighted a focus on finding new therapies for FSHD2, the even less common form of the disease that Wilson lives with. This particular variant affects only about 5% of those diagnosed with FSHD, meaning roughly 43,000 people worldwide share this specific genetic challenge.
The broader scientific community has increasingly turned its attention to FSHD, particularly focusing on a gene known as DUX4. In people with FSHD, a genetic error leads to the over – expression of DUX4, which ultimately causes the degeneration and atrophy of muscles. Drugmakers have been exploring various strategies to counteract this effect, from small – molecule drugs to gene therapies.
While the path to effective treatment has seen setbacks – notably, an oral drug developed by Fulcrum Therapeutics and Sanofi failed in Phase 3 testing last year – hope remains. Other companies, including Avidity Biosciences, Novartis, Arrowhead Pharmaceuticals, and Dyne Therapeutics, currently have drugs in development targeting DUX4. According to the nonprofit FSHD Society, there are currently more than a dozen active programs aimed at this specific genetic culprit.
A key investment target for Solve FSHD is Epicrispr Biotechnologies, a San Francisco Bay Area biotech company that recently raised $68 million in a Series B round, with Solve FSHD participating as a key investor. Epicrispr is developing a first – of – its – kind genetic medicine for FSHD, and its lead program, EPI – 321, is slated to begin a Phase 1 trial in New Zealand this year.
Epicrispr’s approach stands out among other DUX4 – targeting therapies. Rather than directly altering DNA, the company uses CRISPR tools to regulate gene expression – effectively turning genes on or off. For FSHD, their strategy involves using CRISPR to bind to a precise region of the DUX4 gene and making a chemical modification. The hope is that this epigenetic editing technique will stop the expression of the problematic protein without the potential health risks associated with physically cutting into DNA.
Amber Salzman, the CEO of Epicrispr, brings a deeply personal connection to the fight against genetic disorders. Having previously worked in biotech and as a patient advocate, she was motivated to lead Epicrispr not only by the scientific potential but also because FSHD affects her husband’s family. She co – founded the Stop ALD Foundation years ago after her son and two nephews were diagnosed with adrenoleukodystrophy (ALD), a rare disease.
One of her nephews tragically died from ALD in 2004. However, her son and second nephew received a treatment that was later approved as Skysona. Salzman sees Epicrispr’s technology as a breakthrough, addressing limitations she encountered in prior genetic medicine approaches. She believes this strategy, which preclinical tests suggest can impact muscle function and block the DUX4 protein from “seeping out”, goes after the “absolute root cause” of FSHD and represents a “really, really different approach”.
Epicrispr, co – founded by Stanford researcher Stanley Qi, who worked with gene – editing pioneer Jennifer Doudna, isn’t solely focused on FSHD. The company, which raised a $55 million Series A round in 2022, is also pursuing preclinical drug candidates for several other conditions, including heterozygous familial hypercholesterolemia, alpha – 1 antitrypsin deficiency, certain eye diseases, and undisclosed blood cancers. However, EPI – 321 for FSHD appears to be the furthest along, heading towards clinical trials.
While pouring millions into scientific research is a major prong of his strategy, Wilson is also personally experimenting with a variety of cutting – edge treatments and longevity protocols. These experimental regimens are overseen by medical professionals he has hired, reflecting his proactive and hands – on approach to his health battle.
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One of the more intense personal treatments involves receiving hefty and painful 90 – minute platelet – rich plasma (PRP) injections. This treatment, distilled from Wilson’s own blood, is administered into inflamed areas along his back and legs. While athletes commonly use PRP successfully to ease pain in conditions like arthritic knees, its efficacy for muscular dystrophy remains unclear. Yet, Wilson is willing to explore every possibility.
Adding another layer to his personal quest, Wilson flies to Mexico twice a year to receive stem – cell injections. These treatments are not legally available in the United States or Canada, highlighting his willingness to travel and undergo procedures outside conventional medical pathways in his urgent search for relief or improvement.
Beyond injectables, Wilson incorporates several longevity treatments into his routine. He takes a weekly dose of rapamycin, a cheap antifungal cancer drug that has gained popularity among those seeking to extend their healthy years. Scientists are investigating rapamycin for its potential inflammation – dampening effects, and its promise has been shown in lab settings, significantly lengthening the healthy lifespan of worms, flies, and mice. It’s now being tested in trials involving pre – menopausal women and aging dogs.
He also receives intravenous drips of NAD+, an enzyme crucial for cellular energy production. Our bodies naturally produce NAD+, but levels decline with age. Supplementing NAD+ through pills or IV drips is speculated by some to help people live longer, feel younger, or even regenerate cells, though science has yet to definitively confirm these benefits in humans. Kourtney Kardashian has famously touted NAD+ as “our genetic key to longevity,” though this is not a scientific assessment.
Wilson is also reportedly undergoing electroacupuncture and taking daily doses of testosterone as part of his multi-faceted experimental regimen. He is acutely aware that trying these treatments meticulously one by one to evaluate their specific effects is a luxury he cannot afford given his circumstances.
“My time is limited,” Wilson told one outlet, explaining the urgency behind his actions. He recognizes his unique position, possessing significant wealth at a crucial moment in his fight against the disease. I have the right amount of money at the right time,” he stated, adding, “And I’m willing to take the risks.” This encapsulates his entrepreneurial spirit now channeled into a high-stakes health venture.
Beyond his health and philanthropic efforts, Wilson has also pursued other business interests since leaving Lululemon. An attempt to launch a new “technical apparel” brand called Kit & Ace with his family, selling machine-washable cashmere, ultimately flopped after opening and closing numerous stores. The struggling company was eventually sold.
However, he found considerable success by taking a different approach. In 2019, he invested nearly $1 billion for a significant stake in Amer Sports, a Finnish parent company of prominent brands like Arc’teryx and Salomon, acquired in a $5.2 billion deal alongside Chinese sporting giant Anta Sports Products. Though he holds no formal title, Wilson acts as a key advisor, focusing on transforming these brands to appeal more to everyday users and women, replicating elements of the original Lululemon playbook. This strategy appears to be paying off, with Amer’s sales jumping significantly and the company reportedly targeting a $10 billion valuation in a potential U.S. IPO.
Wilson has also built a substantial presence in Canadian real estate through Low Tide Properties, a firm he co – founded that has spent over $2 billion acquiring and renovating properties, primarily commercial real estate in Vancouver. The firm is also making significant investments in Vancouver’s burgeoning life – sciences sector. While these real estate investments have been successful, Wilson admits they are not his passion, lacking the deep intuitive understanding he possesses for technical apparel.
Even amidst his new ventures and his critical health battle, Wilson’s connection to Lululemon remains palpable. He continues to voice strong criticisms of the company’s current direction, lamenting what he sees as a departure from its core mission and product focus. He has been particularly vocal about the company’s marketing choices and expansion into certain apparel lines.
Despite his critiques and the fact that Lululemon’s stock has performed strongly in recent years, it’s clear that the company’s identity is deeply intertwined with his own. While he seeks to build a new legacy, both in business and in philanthropy, the undeniable impact of Lululemon on his life and the global apparel industry is a fact. Yet, it is the urgent, high – stakes mission to conquer FSHD that appears to be the driving force defining this current, crucial chapter of his life.
Ultimately, Chip Wilson’s journey is a compelling blend of entrepreneurial ambition and a very human fight against physical decline. He is leveraging the immense wealth and business acumen forged in the world of athletic wear to tackle a devastating disease, not just for himself, but for the thousands of others affected globally. His willingness to take significant risks, both financially and personally, in pursuit of a cure offers a beacon of hope to the FSHD community and underscores the profound impact individuals of great means and determination can have on the landscape of medical research. It is a race against time, fueled by a powerful personal imperative, that holds the potential to redefine his legacy in a way far exceeding the creation of even the most successful apparel brand.
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