Durham County

Tar Heel: Duke Dr. Richard Bedlack collecting new ideas to fight ALS

With his bright suits, Dr. Richard Bedlack strikes an unusual figure among Duke doctors and researchers.
With his bright suits, Dr. Richard Bedlack strikes an unusual figure among Duke doctors and researchers. Duke Medicine

Dr. Richard Bedlack sees himself as a sort of medical Fox Mulder, working to parse valuable remedies from the wild world of ALS treatment claims just as Mulder explored reports of extraterrestrial life in the TV series the “X-Files.”

And much as Mulder, an FBI agent, looked into claims his colleagues might have dismissed outright, Bedlack works from within traditional science to better understand the various claims that proliferate in ads and Internet chat rooms.

Bedlack founded and directs Duke University’s ALS Clinic, which takes an unusual interdisciplinary approach to helping ease the suffering and extend the lives of patients with this fatal disease.

His work there led him to convene a group of doctors to evaluate alternative treatments for amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease. Lately, he’s even started exploring controversial claims of patients who say they recovered from ALS, a degenerative disease that affects nerve cells in the brain and the spinal cord and for which there is no known cure. Bedlack hopes his ALS Reversals program might yield important information that could lead to a cure.

Bedlack also speaks nationwide on ALS, attends local charity events as well as academic lectures, and founded a program that trains patients to be better advocates for ALS research funding.

With his spiky hair and penchant for brightly colored suits, Bedlack strikes an unusual figure among Duke doctors and researchers. But his outsized personality is a solace to patients who have little reason for hope, says Stacey Asnani, a social worker and coordinator for the clinic.

He takes selfies with his patients, who are often eager to see what kind of outrageous outfit he’s wearing, or to catch a glimpse of his blue Porsche with the “FIGHT ALS” license plate.

Asnani describes him as “quirky but genuine,” and says his dedication to the ALS community and distinctive personality bring comfort to his patients – and hope for new remedies.

“He’s a unique person who brings this remarkable touch for working with patients who are devastated by this disease,” Asnani says. “He’s always doing something new, like this well of creative ideas and energy that trickles down to the rest of us.”

Upbeat tone

Bedlack grew up in a small Connecticut town, a precocious boy who was the first in his family to go to college. His interest in the brain was clear at an early age, when he would roll his brother down a hill and examine closely to see how dizzy he got.

He went to the College of William and Mary, where he earned a bachelor’s degree in psychology, and returned to his home state to earn medical and doctorate degrees at the University of Connecticut.

His specialty was neurology, but his specific interest in ALS came at Duke, where he first encountered patients with the disease during an internship and later his residency. This was 15 years ago, long before the Ice Bucket Challenge campaign that made ALS a well-known condition.

Soon after coming to Duke, he founded the ALS clinic, borrowing an interdisciplinary approach he saw at other hospitals. Every Tuesday, patients come from across the state and beyond to see Bedlack, along with social workers, nutritionists, physical therapists, speech therapists and others who specialize in ALS.

Because the disease is fatal, much of the staff’s energies go toward prolonging the lives of patients and improving their quality of life. The clinic helps concentrate expertise that would be extremely rare in most practices.

They typically see 20 patients every week at the clinic, which has the feeling of a reunion as much as a medical event. Bedlack has helped establish the upbeat tone, Asnani says.

“I like to dress how I feel,” he says. “And putting on a hot pink suit when I go to the clinic seems to keep the right mood.”

Looking for a marker

Patients often ask him about possible treatments they found on the Internet, many of them natural remedies that had never been studied in clinical trials.

Most doctors might discourage their patients from trying such unproven methods or suggest they make their own decision. Neither option seemed fair to Bedlack.

“They’re asking for your years of expertise and training,” he says. “They want your opinion, but it’s incredibly time-intensive to research all of these ideas.”

The solution he came up with is a website, ALSUntangled.com, which serves as a clearinghouse for information on these remedies. He and more than 100 other researchers worldwide developed a system to evaluate treatments and publish their results.

So far, they’ve looked into more than 200 remedies, noting any anecdotal or scientific evidence that they may work, as well as the risks involved.

The results are shared through social media, where he also collects new ideas.

His interest in alternative therapies led him to research Dean Kraft, a self-professed energy healer who claimed he could cure the disease. Kraft refused to share his secrets with Bedlack and has since died, but Bedlack did get the medical records of one of his patients. Bedlack believes she did recover from ALS and has since found a total of 22 such cases. He is studying them closely to see what they have in common.

His hope is to find a genetic marker, and he says his methods are not without precedent; he points to research breakthroughs based on patients who harbored HIV for years without developing AIDs.

“If there’s some reason these people can recover from ALS, that could help lead to a cure,” he says.

But, he notes, he’s open to the even more controversial idea that some of these remedies might work.

Another possibility is that there is a closely related condition that mimics ALS. If that’s the case, the methods used to diagnose the disease might change.

“In any case, we’re going to learn something from this,” he says.

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Richard S. Bedlack Jr.

Born: December 1965, Cromwell, Conn.

Residence: Durham

Career: Director, Duke Medical Center ALS Clinic; neurology professor, Duke University; staff neurologist, Durham Veterans Affairs Medical Center

Education: M.D. and Ph.D., University of Connecticut; B.A. psychology, College of William and Mary

Family: Wife Shelly

Fun Fact: Bedlack encourages his patients to create “bucket lists,” and earlier this year, Bedlack crossed one item off of his own – meeting his favorite designer, Paul Smith. The British designer invited Bedlack to Fashion Week in Paris after a manager in the Las Vegas store where he buys some of his suits asked about his work with ALS. Bedlack wrote back describing how much his patients love his suits, and the letter made it back to the designer.

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