In defense of treating my Pilates stiffness with an ultra-rare bone disease drug

I was enjoying a remarkably crisp endive salad at The Polo Bar with a few colleagues from the longevity space when the FDA alert hit my phone. Regeneron had finally secured approval for its groundbreaking therapy targeting fibrodysplasia ossificans progressiva, or FOP. For those outside the elite biohacking community, FOP is an ultra-rare genetic disease in which the body’s skeletal system goes completely rogue, replacing muscle and connective tissue with superfluous bone. It is a harrowing, debilitating condition that affects roughly 400 people in the United States.

And as of Tuesday morning, it affects exactly one more: me.

Now, before the medical establishment sends its usual flurry of cease-and-desist letters to my publisher, I should clarify that I do not possess the genetic mutation for FOP. My DNA was sequenced at a boutique clinic in Geneva last spring, and my genome is, frankly, spectacular. But the data is clear: modern urban living, combined with the micro-stresses of managing a diverse portfolio of index funds, leads to what I call lifestyle ossification. You sit at a desk, you tense your shoulders during a difficult Zoom call, and slowly, imperceptibly, your fascia begins to calcify. You become rigid. You lose your essential fluidity.

Regeneron spent three decades and untold hundreds of millions of dollars developing a mechanism to halt rogue bone formation. It would be a tragedy of missed potential to restrict such a miracle solely to the handful of people whose bodies are literally fusing together, when it could be doing so much good for those of us who just feel a little tight in the lower lumbar region after a long-haul flight from Dubai.

Securing my initial supply required some creative navigation of the pharmaceutical landscape. Because the FDA, in its infinite bureaucratic wisdom, designated the Regeneron compound as an orphan drug strictly for confirmed FOP patients, you cannot simply pick it up at Erewhon. Fortunately, I retain the services of Dr. Julian Cresswell, a concierge physician in Tribeca who understands that off-label is simply a synonym for cutting-edge. Julian immediately saw the vision.

The human body is constantly building and breaking down bone, Julian told me over a drip of NAD+. If we introduce an ultra-targeted, profoundly expensive pharmacological brake on osteogenesis, we can theoretically keep your cervical spine as supple as a newborn’s. Is there a clinical trial for this? No. But waiting for peer-reviewed studies is the greatest risk factor for aging.

Julian managed to procure a six-month supply of the Regeneron drug by quietly purchasing the entire initial inventory allocated for the Pacific Northwest. It arrives in a temperature-controlled biometric lockbox, which I keep in my kitchen island next to my artisanal sea moss gel.

Every morning, I combine the prescribed dosage with raw colostrum, a handful of activated macadamia nuts, and a scoop of marine collagen. I blend it on high for forty seconds. The taste is profoundly medicinal, leaving a chalky residue that coats the throat and hints at the immense molecular complexity of a thirty-year research and development cycle. I drink it while doing my breathwork, visualizing my osteoblasts standing down, ordered into a state of permanent, tranquil submission.

The results have been nothing short of transformative. Within three weeks, the persistent ache in my serving shoulder—a phantom nuisance that has plagued my tennis game since my late thirties—vanished entirely. My posture feels less structural and more conceptual. I am floating through my day, completely unburdened by the threat of spontaneous skeletal fusion that, while incredibly unlikely to ever happen to me, was subconsciously weighing on my spirit.

Last month, I hosted a wellness retreat at my compound in Sedona, gathering a few dozen thought leaders to explore the frontiers of cellular optimization. I brought a single, precious vial of the Regeneron compound to share during our closing cacao ceremony. I explained to the group that while none of us suffer from FOP, we all suffer from the creeping rigidity of the human condition.

We passed the vial around the fire pit, each taking a micro-drop under the tongue. The energy in the space shifted immediately. One tech founder, who had been dealing with a stubborn case of tennis elbow for months, wept openly as he visualized his rogue osteoblasts dissolving into the ether. It was a profound reminder of the healing power of incredibly scarce, hyper-expensive pharmaceuticals when placed in the right hands.

Of course, not everyone in my circle is as forward-thinking. During a recent dinner party in Montecito, I attempted to explain the preventative benefits of suppressing spontaneous bone growth to a prominent venture capitalist. He looked at me with a mixture of confusion and bourgeois morality, asking how I could justify hoarding a drug that children desperately needed to survive. I gently reminded him that stress is the number one killer in America, and dealing with his judgmental tone was causing my cortisol levels to spike. I took an extra dose of the Regeneron compound right there at the table, just to protect my joints from the negative vibrations.

Naturally, there has been pushback from the usual corners of the grievance economy. Last week, a patient advocacy group launched a rather aggressive social media campaign after discovering that several high-net-worth wellness influencers had adopted the Regeneron protocol, leading to immediate backorders at specialty pharmacies. They argued, with a stridency that suggests they could really use some magnesium, that diverting a life-saving orphan drug for cosmetic joint mobility is unethical.

I find this zero-sum thinking deeply exhausting. What the advocates fail to understand is that my early adoption of the compound is actually a net positive for the FOP community. By demonstrating a massive, previously untapped market of wealthy, able-bodied professionals desperate to prevent mild joint stiffness, we are heavily incentivizing the market. Regeneron’s stock is up. Their shareholders are thrilled. We are subsidizing the pipeline.

If anything, the rare-disease community should be thanking us for validating their suffering with our capital. We took an obscure, niche medical breakthrough and gave it cultural cachet. You cannot buy that kind of exposure, unless you are paying my standard integrated sponsorship rates, which Regeneron declined to do.

I recently reached out to Regeneron’s executive team to discuss a potential brand ambassadorship, envisioning a campaign where we rebrand the drug from a devastating genetic mutation intervention to a premium skeletal fluidity enhancer. Their response was incredibly illuminating.

Marcus’s hostility is a classic symptom of corporate rigidity—a calcification of the mind, if you will. It is precisely the kind of energetic blockage that my morning protocol is designed to clear. He is stuck in a paradigm where medicine is only for the sick, rather than a tool for the optimized to achieve absolute transcendence.

As we move into an era of personalized medicine, we must discard the outdated notion that a thirty-year scientific miracle belongs solely to its intended recipients. If a biopharmaceutical company spends billions of dollars successfully turning off a biological switch, it is my right as a consumer to flip that switch just to see how it feels.

I will not apologize for prioritizing my own skeletal harmony, nor will I yield to the guilt-trips of those who rely on FDA indications to tell them what their bodies need. True wellness requires taking bold, unapproved action. And right now, my joints have never felt more liberated from the tyranny of bone.