Updated October 20, 2017
Dr. Richard Bedlack’s passion for neurology started when he was a child. As many children do, he used to roll down hills with his little brother – but Dr. Bedlack’s inquisitive nature made him wonder why it made them dizzy. His fascination with the nervous system grew over time as he noticed some people walked differently or had shaking hands.
About twenty years ago, as a neurology resident at Duke University, he had a eureka moment when he met his first ALS patient. “It was the most dramatic physical exam I had ever seen. My attending doctor told me that we have no idea why ALS happens, we don’t know why people with it get worse, and we can’t do anything about it,” Dr. Bedlack said in an interview with ALS Canada. “I remember driving home that night, deciding that this would be the disease I would work on. There is such an unmet need. We should be offering people something to help make their lives better and have a research program to give them hope.”
Three years later, in 2001, he opened the Duke ALS Clinic in Durham, North Carolina, which has seen more than 2,000 unique patients and currently follows 400. “When we assess a person with ALS, we examine them from head to toe, for four to five hours, kind of like a NASCAR pit crew,” said Dr. Bedlack, director of the clinic, and an associate professor of medicine/neurology at Duke.
Dr. Bedlack’s can-do approach and attention to detail also fuel his research program. “We built Duke’s research program around the mindset that it’s not about what we can’t do, it’s focused on all the little things that we can do,” he said. His modesty is at odds with the significance of two programs he founded that benefit people living with ALS around the world: ALSUntangled and ALS Reversals.
ALSUntangled
Dr. Bedlack was surprised to discover that well over 50 per cent of people living with ALS were self-experimenting with alternative treatments they found on the Internet. Rather than adopting a “do this, don’t do that” approach, he created ALSUntangled to engage patients in shared decision-making about whether alternate treatments are worth trying.
The program has grown by leaps and bounds since it was launched in 2009. Through ALSUntangled’s website, people submit requests for a review of alternative or off-label treatments, adding a new item to the list or voting on items suggested by others. The ALSUntangled team conducts comprehensive reviews of the most-requested therapies using a scientific approach of gathering evidence and reporting results. They start by searching the scientific literature and news articles, then attempt to contact the source of the claims and see if they can perform a site visit to investigate. Finally, they poll the team of almost 100 clinicians volunteering with ALSUntangled to see if any of their patients have experience with the therapy.
Final reports are published in the journal Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration. To date, ALSUntangled has completed over 40 reviews that are posted free online.
ALS Reversals
Dr. Bedlack’s work at ALSUntangled turned up a surprising new avenue of investigation — patients living with ALS whose conditions improved over time. “When I learned about the first patient with a real ALS reversal through ALSUntangled, I felt like Fox Mulder on the X-Files having an extraterrestrial moment,” said Dr. Bedlack. “That somebody with ALS could actually get better was a complete shock to me.”
Dr. Bedlack decided to establish the ALS Reversals program to better understand ALS reversals and to try and make them happen more often. To date, his team has confirmed 34 reversals since the program began in 2015.
One of the reversals is Mike McDuff, a resident of Providence, Rhode Island. McDuff had been diagnosed with ALS by multiple experts and had lost the ability to speak and swallow. Within six months of taking a supplement called lunasin, a soy product originally intended for lowering cholesterol, McDuff had improved so much that he was speaking normally in a television interview.
Dr. Bedlack decided to give McDuff’s lunasin regimen to 50 other patients to see if anyone else got better. This lunasin trial has taken three years to plan, coordinate and execute. The unique study design addresses some common frustrations with more typical ALS clinical studies. Since the objective is to look for a big response, the recruiting criteria are very broad. Patients measure their own ALSFRS scores and submit them by computer, and there are only three required on-site visits.
The study is no longer recruiting participants, but information about the study protocol and interim results are available at ALS Reversals and reports by participants can be viewed at PatientsLikeMe.
ALS Canada Virtual Research Forum
Update: Dr. Bedlack was one of more than 20 speakers who participated in the ALS Canada Virtual Research Forum in August. During his presentation, Dr. Bedlack provided an update on ALSUntangled, the latest results of the lunasin trial and the alternative therapies he’s considering studying next under the ALS Reversals program.
There are three things Dr. Bedlack hopes people will take away from his talk:
- If they are thinking about self-experimentation with alternate therapies to realize they are not alone
- To know that clinicians and scientists are trying to pay attention to everyone’s experience with the disease
- To understand that ALS reversals are rare but real, and there’s hope
Dr. Bedlack’s presentation at the Virtual Research Forum is available online here.