Medicine By Design

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The first thing you notice are the clothes. How could you not?

Snake-print pants woven from a shiny silk. A rust-brown suit jacket with patchwork prints stitched on its sleeves and back panel. Thick alligator-skin boots. Heavy Roy Orbison-style designer glasses whose lenses fade from dark to light. Hulking silver rings cover more than half of his fingers. One, a howling wolf’s head, stands more than an inch off his tanned knuckle. 

Dr. Richard Bedlack is dressed beautifully, if not like a background character in a Tarantino flick. He’s tall and slim, unfolding from the driver’s seat of his Tesla, which is white and has yellow-orange flames painted across the hood. 

“I always wanted a real Hot Wheels car when I was a kid,” he says. “Now I have one.”

But once you get past the clothes and start talking to the man—who is one of just 25 doctors worldwide working full-time on finding a cure for Amyotrophic lateral sclerosis (ALS)—you realize that the clothes are just window dressing, pun intended. 

Bedlack’s outlandish wardrobe is far more altruistic than a pure expression of style. His clothes work as something of a red herring for his patients, meant to briefly take their minds off the fact that they are battling a disease that will more than likely kill them within a handful of months.

But the clothes can only distract. They can’t treat patients and they certainly can’t change their mindsets. For that, Bedlack relies on his own indefatigable optimism and abiding embrace of the concept of hope. 

Bedlack believes that people—whether they’re battling ALS or not—will always default to hope. That’s how he explains the appeal of a clinic in Moose Jaw, Canada, that promised to cure anyone of ALS for as little as $75,000; Canadian media reported that patients were left disappointed. Though it’s overwhelmingly documented that ALS is, at this point, an incurable disease, people staring directly into the horrors of ALS will look for anything.

“If I don’t give them hope, someone will,” Bedlack told The Assembly. 

Bedlack says some of his contemporaries think he skirts the line between false hope and realistic options. But Bedlack says he is very clear with his patients that hope doesn’t mean falsehood. 

He doesn’t mean telling someone he can cure them of ALS. He probably can’t. He knows that. His patients know that. In his years of research, Bedlack has found evidence of just 63 reversals of the disease’s progress “throughout the history of the world”—reversals that some of those skeptics say are too abnormal to learn from. 

Instead of false hope or unfulfilling promises, Bedlack looks to his patients’ lives outside of the disease, asking them to list three things they’re hopeful for. Rarely do his patients say a cure. 

He does this because he knows that hope can work beyond the mythical, beyond the not-easily-definable. 

In fact, Bedlack said, people who are more hopeful have different brain patterns than those who lose hope. Their bodies are less inflamed. They tend to live longer. Some of that, he admits, is corollary. Hopeful people tend to live healthier lives, exercise, eat better, not smoke or drink. Still, from a clinician’s perspective, these things are all interrelated. And in that sense, hope is a medicine. 

The Cure is Out There

ALS—colloquially known as “Lou Gehrig’s Disease”—is a progressive neurodegenerative disease that affects the brain’s motor neurons. In short, it prevents the brain from talking to the muscles, impeding a person’s voluntary body control. While it typically starts small and locally with muscle cramps, weakness in the hands or feet, or difficulty swallowing, the disease progresses quickly. 

Typical survival rate: two to five years. 

We don’t know its cause, nor do we have a cure. And once a person has it, they typically only get worse. 

Some of the world’s roughly 300,000 ALS patients far outlive that two-to-five-year window. Some, like Andrea Peet, who has been working with Bedlack for 11 years, go on to complete marathons in all 50 states. A very few others see a reversal of symptoms, something Bedlack likens to a cure. How to harness that cure and apply it to other patients remains a mystery. 

For Bedlack, no idea is too outlandish. This idea led him to start ALS Untangled, a database where he and a global team of more than 130 ALS clinicians from 11 countries compare and study alternative and off-label treatments submitted by other doctors, clinicians, and patients themselves.

Its articles have been downloaded more than 500,000 times. ALS Untangled has brought a wider recognition to the idea that ALS patients are, as Bedlack describes it, “buying and trying things”—and that doctors should be paying closer attention to what is being bought and tried.

Bedlack reasons that if doctors and clinicians are more open to alternative treatment ideas, it’ll be less likely that ALS patients will trek to Moose Jaw, Canada, and fork over $75,000 to someone claiming he can do what no one else has managed. 

Bedlack says the open approach of ALS Untangled helped him and his colleagues to pinpoint eight promising alternative therapies for ALS. 

For Bedlack and the other doctors and clinicians behind ALS Untangled, no idea is too outlandish. And the idea that the cure might lie somewhere out there in the universe is why one of Bedlack’s suit jackets bears a UFO on its back panel.

“If I don’t give them hope, someone will.”

Richard Bedlack

For Bedlack and the other doctors and clinicians behind ALS Untangled, no idea is too outlandish. And the idea that the cure might lie somewhere out there in the universe is why one of Bedlack’s suit—made by designer Jerry Atwood, whose dressed Post Malone and Little Nas X— bears a UFO on its back panel.

Bedlack has also worked with Manuel Cuevas, the legendary Nashville-based tailor who has dressed John Lennon, Dwight Eisenhower, John Wayne, The Rolling Stones, Elton John, Marlon Brando, Bob Dylan, and Elvis, to name just a few.

Cuevas’s jaw dropped. He explained that he lost his wife to the disease six years earlier. 

“He’s been my client ever since,” Cuevas said. “And I’ve learned that he’s so dedicated to his patients. But outside of his work, he’s just such a good person.”

A Support Network 

Bedlack’s vibrant style is his trademark. If anything, it’s by design. It always has been. 

Bedlack has dressed with flair for as long as he can remember. Growing up in suburban Cromwell, Connecticut, he used clothing as a shield to evade potential bullies.

“Instead of kids taking my lunch money on the bus, they would laugh and say ‘What a nut this kid is,’ and leave me alone,” he says.

He also noticed that his clothes, which Bedlack describes as a “suit of armor,” helped brighten the moods of people around him. 

In addition to clothes, a young Richard Bedlack was also fascinated by neurology.

He would obsess over observations, wondering why he got dizzy after rolling down a hill, why a person shuffled their feet when they walked, or why someone’s hand would shake when they wrote. He logged his questions and observations in a notebook that he would tote to a local library on the weekends. There, a librarian would lead Bedlack to stacks of books that might help him better understand the brain’s mechanisms. 

After studying at The College of William & Mary, Bedlack returned home, hoping to save his middle-class parents a bit of coin, and enrolled in a highly competitive, fully funded neuroscience MD/PhD program at the University of Connecticut. After finishing, Bedlack came to Durham in 1995 for his neurology residency, enticed by the programs Duke was building for patients with rare neurological diseases. 

It was halfway through his residency that Bedlack first encountered a patient with ALS. He was equally fascinated by the disease as he was by the background given to him by his attending physician. 

“He walked in and said, ‘This is what it’s called, we don’t know why it happens, and there’s nothing we can do about it. All the patient can do is go home and get their affairs in order.’ And then he walked out,” Bedlack said. 

That extraordinarily brief history of ALS left an indelible impression on Bedlack, who almost immediately became obsessed. However, as Bedlack describes it, ALS is a net-negative disease. By that, he means it loses hospitals, clinics, and universities money. And because of that, clinicians say, ALS research has historically been underfunded.

“We have a doctor who is ready, willing, and able to spend full time researching ALS…but we can’t find dollars. Are you kidding me? That’s a problem I can help solve.”

George Wendt, Charleston entrepreneur

Bedlack spent the next few years working in Duke’s neurology clinic, only focusing on ALS one half day each month. At the time, patients were seen in Duke’s Muscular Dystrophy Association clinic, alongside people battling a wide variety of neuromuscular diseases. 

In 2001, Bedlack began soliciting donors and applying for grants to support a dedicated ALS clinic at Duke. Growth came slowly. After the first year, the half day per month of ALS research became a full day per month. By year five, Bedlack was focusing on ALS two full days a month, inching closer to working full-time on it.

As his reputation grew, Bedlack’s patients and those who studied his clinical findings began to evangelize in their own ways. Some started the Ice Bucket Challenge, others raised hundreds of millions of dollars, and a few have spoken before Congress about the need for ALS research funding.

By 2021, more than two decades after he started raising money,  Bedlack was still only able to dedicate a portion of his work to ALS.

The following year, a trio of families approached Bedlack with the hope of enabling him to research ALS full-time. 

The group was spearheaded by George Wendt, a Charleston-based entrepreneur who lost his father to ALS in 2013 after a nine-month fight with the disease. Wendt and Loy Stewart, a friend who also lost his father to ALS, had met Bedlack at a 2014 golf tournament. 

Like everyone else, Wendt and Stewart were struck by Bedlack’s style. Like everyone else, they were soon struck by his approach to life and his message of hope. 

Within a year of their meeting, Wendt was corralling a group to start fundraising.

“We have one of the best ALS doctors in the world, only spending 20 percent of his time focusing on ALS?” Wendt said. “I was absolutely outraged. I mean, we have a doctor who is ready, willing, and able to spend full time researching ALS, a guy who would walk through fire to find a cure, and we have an institution that’s ready to help him, but we can’t find dollars. Are you kidding me? That’s a problem I can help solve.”

The group set their goal at $3.5 million, the interest from which, once invested, would pay part of Bedlack’s salary, allowing him to research ALS full-time. Wendt and Loy partnered with Brett Hoge, who after losing his stepfather, Larry Hughes, to ALS, started raising money through the Larry Vance Hughes ALS foundation. 

Hughes’ doctor throughout his battle with the disease? Dr. Richard Bedlack.

“If I believe that hope is important to my patients, if I believe that it’s a treatment, then I need to find ways to stay positive; to stay hopeful.”

Richard Bedlack

By 2022, after tapping more than 500 donors, the trio hit their goal, marking the milestone with a celebration at the Chapel Hill Italian restaurant Il Palio. There, the three families who spearheaded the initial fundraising were joined by some 60 other donors. Several were joined by their loved ones living with ALS, while plenty of others didn’t survive long enough to see the endowment. 

Bedlack—today, the Stewart, Hughes, and Wendt Distinguished Professor of ALS at Duke University—remembers it as one of the best nights of his life. 

Today, the Duke ALS Clinic counts two neurologists, a pulmonologist, a physician’s assistant, and 16 therapists and nurses, according to its website. The group currently treats more than 500 patients, making it one of the largest ALS clinics in the world. Since its inception, the Duke ALS Clinic has seen more than 5,000 patients from every corner of the planet. 

Meanwhile, on the back panel of another of Bedlack’s Cuevas suits is a shipyard, an eagle, and a stack of books; nods to the Stewarts, owners of a Charleston-based shipping company; the Hugheses, a family of avid hunters; and George Wendt, who teaches a course on leadership and politics at the Harvard Extension School. 

Ready to Wear 

In 2014, Bedlack was contacted by a world-renowned British fashion designer, Sir Paul Smith.

Smith, known for his bold-patterned clothing, learned of Bedlack’s work, style, and impact he had on his patients through social media and invited him to Paris Fashion Week. 

A few months later, Bedlack and his wife walked the red carpet alongside Smith, sat in the front row during his show, and even took a turn on the runway before it started. Afterward, Bedlack and Smith cooked up a collaboration in which Smith would make ties for the coaches to wear during that year’s heated Duke/UNC-Chapel Hill basketball game. 

Its main feature was the blue cornflower, worn in front of a national audience. 

Since then, Bedlack has collaborated with designers like Jerry Atwood, Union Western, Imp of the Perverse, Respoke, Standout Customs, and Azure Works to create his custom suits. 

His newest partnership is with someone not nearly as well-known. 

Sam Pearce is an ebullient young assistant professor teaching in North Carolina State University’s textile department. Bedlack contacted her after one of his most stylish patients arrived for an appointment in an atypically subdued outfit. Asking what was wrong, he learned that his patient’s ALS had advanced to a point where her favored ornate clothing became too difficult to manage for both her and her caregivers. 

Pearce was working on adaptive fashion—an approach to clothing and apparel designed specifically for people with physical disabilities and limitations—and Bedlack asked if there was a way for doctor and designer to collaborate. 

By the fall semester of 2024, Bedlack began connecting his patients with Pearce and her class. Her students would learn the patients’ struggles and design clothes to make it easier for patients to dress more fashionably. A handful of students were interested for personal reasons: their sorority’s house coordinator had recently been diagnosed with ALS. 

Pearce’s students often focused on closures—fasteners, buttons, zippers—using magnets, for example, to help patients struggling with motor dexterity. 

“When this class starts out, we meet with the patients, Dr. Bedlack, and his team to learn about the challenges that are specific to ALS,” Pearce said. “But we also learn about what brands they like because we want them to be able to still be expressive, to be able to wear clothes that they want to wear.”

Not all of Pearce’s students participate in the ALS project. However, all of them interact with Bedlack during his monthly class visits. According to Pearce, Bedlack’s effect on the students is the same as it is with seemingly everyone else. First, they obsess over his style. But what they’re left with is his message of the power of hope. 

Keeping the Faith

Bedlack doesn’t go to his patients’ funerals anymore. 

It’s not that he doesn’t mourn them. If anything, according to everyone interviewed for this story, Bedlack is known for developing a deep personal connection with most of the people he treats. In this way, he’s unlike so many doctors, especially those who trade in the incurable. He wants to be there for his patients, for their families. He just can’t. 

He used to. 

But standing above the coffins of his patients some years ago, Bedlack felt a burdening sense of failure. He didn’t do his job, his life’s work. 

Now, at 59 years old, that life’s work is likely closer to its end than its beginning, though Bedlack said he has no idea when his career will be done. 

When asked if he’ll consider his career a failure if he retires before finding a cure for ALS, his eyes swelled with tears. He said that, unless he can for at least a subset of his patients, a large part of him will feel like he’s failed. Still, he’s proud of what he has accomplished, of the places, the practices, and the outlooks he’ll leave in his wake. 

He also finds solace in the fact that the professorship endowed by the Stewart, Hughes, and Wendt families isn’t his professorship; when he retires, the trust will allow someone else to focus full-time on finding a cure for ALS, building on the foundation that Bedlack and his team created over the last 20 years. 

True to his ethos, Bedlack remains hopeful, pointing to those 63 extraordinarily rare people who have been cured of ALS. 

“The fact that it can happen tells me that we shouldn’t just accept that the best we can do is slow ALS progression,” he said. “And if I believe that hope is important to my patients, if I believe that it’s a treatment, then I need to find ways to stay positive; to stay hopeful.”

Correction: An earlier version of this story misidentified the businesses of the Hughes and Stewart family. This story was also updated to correct the name of the designer of one of Bedlack’s suits.

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Michael Venutolo-Mantovani is a writer and musician living in Chapel Hill with his wife and their children. He has contributed to the New York Times, National Geographic, GQ, Wired, BBC, and several others.