AANEM News Express

AANEM News Express

Richard S. Bedlack Jr., MD. PhD, MS, Honored With 2022 Public Recognition Award

7/28/2022
 
AANEM’s Public Recognition Award honors public figures, celebrities, or entities that have made extraordinary contributions toward increasing public awareness of muscle and nerve disorders. AANEM is pleased to recognize Richard S. Bedlack Jr., MD, PhD, MS, with the 2022 Public Recognition Award.
 
Bedlack is a professor of neurology at Duke and director of the Duke ALS Clinic. He has won awards for teaching and patient care, including Best Neurology Teacher at Duke, Health Care Hero, the Strength Hope and Caring Award, America’s Best Doctor, the AAN Patient Advocate of the Year, and the Rasmussen ALS Patient Advocate of the Year. He has also received numerous ALS research grants, participated in ALS clinical trials, and published more than 100 articles on ALS.
 
Bedlack says he was born to be a neurologist. “One of my first memories is rolling my little brother down a hill in our back yard and marveling at the dizziness he experienced. I remember experiencing it for myself and wondering why. Out in malls or mini-golf courses, I was drawn to people with dysarthria, tremors, and shuffling gaits.”
 
“Back then, we had no Internet of course, so I would ask my mom to explain these things. She had me write them down and every Saturday she would drop me at the library so I could try to figure them out. All through school, I gravitated toward classes that would help me understand the connections between the way people looked or acted and their nervous systems.”
 
By the end of college, Bedlack was certain he wanted a career in neuroscience. He earned his medical degree and doctor of philosophy in neuroscience from the University of Connecticut; and completed a neurology residency, NM fellowship, and master’s degree in clinical research science at Duke University.
 
Bedlack encountered ALS for the first time during residency and thought it was the most amazing and terrible condition he’d ever come across. “I was especially sad when my attending came in and said, ‘This is what we call it. We don’t know why it happens and we can’t do anything for it.’ I decided that day to focus on this disease and I haven’t regretted it for a minute.” Bedlack has devoted his career to building unique programs that give people with ALS more options and more hope.
 
He has grown the Duke ALS Clinic into one of the largest, most comprehensive, and most unique of its kind in the world. “I am so proud of the large multi-disciplinary team and the patient-centric research program I built for people with ALS at Duke. Patients who come to us can now get many options for living their lives with ALS, and they can get hope,” he said. “I get up every day excited about what I am working on, how I am doing it, and who I am doing it with.”
 
One way Bedlack offers hope to his patients is through his unique wardrobe. He’s often spotted walking the halls in a sparkly suit, studded leather jacket, or hot pink pants. “When I was a kid, I noticed that wearing bright colors and loud patterns and prints could help me maintain my energy and positive attitude no matter what I ran into. Also, these had a disarming effect on people around me. As an ALS doctor, I have to be able to maintain my energy and positive attitude over long, tough days in clinic; my last patient needs as much of this as my first patient did. I find that fun clothing helps me do this.”
 
“Also, our clinic can be intimidating for patients. We make lots of measurements and sometimes these will be worse, prompting difficult conversations. I find that my wild outfits help make clinic less scary, maybe even more fun, for patients. My whole multi-disciplinary team has now started to dress in a common theme once a month. We call it ‘Fashionably Fighting ALS.’”
 
Bedlack is also well-known as the leader of the international ALSUntangled program, an effort he’s worked on nearly every night and weekend since 2009. This program uses social networking to investigate alternative and off- label treatment (AOT) options for patients with ALS.
 
“Early in my career I was surprised to see how many patients were self- experimenting with AOTs (like vitamins, supplements, cupuncture, etc.) they found online. I asked my more senior colleagues how they handled this, and the responses I got were eithervery paternalistic or very autonomous. Neither of these responses seemed right to me,” he said. Bedlack felt like he had years of
training and experience that could be used to engage in shared decision making with patients about these products, ultimately helping them make more informed decisions.
 
His team now collects ideas from patients, families, or neurologists and lists them on the “Future Reviews” section of their website (www.alsuntangled.org). “We have so many ideas that I know I will never be able to review them all, so we allow the community to vote for the ones they are most interested in.”
 
All of their reviews are published “free open access” so patients and families never have to pay to read them. They are also shared on the ALSUntangled website and podcast. “I am thrilled to see the hundreds of thousands of downloads the reviews get because it means folks are becoming more educated about AOTs andthereby making more informed decision about them.”
 
 
Bedlack has furthered his mission to support patient engagement with his ALS Clinical Research Learning Institute. This program empowers patients and families to become strong advocates in
the field of ALS by educating them on clinical research and the therapy development process. Certification as an ALS Research Ambassador® provides opportunities to influence and improve the ALS research process.
 
Some of Bedlack’s most exciting work is through his ALS Reversals Research Program, which seeks to better understand cases of recovery from ALS, and to make these happen more often.
 
“I used to think the best we could do was slow ALS down, maybe someday stop it from shortening lives. I have come to believe we should aim higher-to reverse it,” he said. “There are precedents for studying patients who are unexpectedly resistant to a disease and having this lead to new treatments that help everyone with that disease. If I can understand how these ALS reversals happened, I might be able to make them happen more often.”
 
As of today, the most promising AOT Bedlack has researched is curcumin. “This naturally occurring chemical, found in spices like Turmeric and Curry Powder, is associated with nine ALS reversals,” he explained. “It has plausible mechanisms for treating ALS in that it can act as an antioxidant or an anti-inflammatory, can interfere with protein aggregation, and can alter the gut microbiome. There are positive, though flawed, pre-clinical studies in ALS models, and clinical trials in people with ALS. When given orally, it appears quite safe and is inexpensive. I will soon have results from my own trial of a water soluble form of curcumin (Theracurmin).”
 
Bedlack said the most surprising AOT he’s been asked about so far is fecal transplants. “I actually thought the message must have been a typo-that they were asking about fetal transplants (ex. fetal stem cells). But this review opened my eyes to the potential importance of the gut microbiome in driving ALS progression, and there is more and more evidence emerging for this.”
 
Bedlack is also looking forward to establishing Duke’s first ever Endowed Professorship in ALS. “This would allow someone (hopefully me) to focus full time here on ending this disease.”
 
Bedlack’s passion is truly inspiring. “To those physicians who see patients with ALS, please find a way to be optimistic, respectful of patients’ ideas, and responsive to their questions and concerns. Remember there is always something you can do for every patient and family. Try to say at least one hopeful thing at each visit. We all need hope!”
 
“To those just starting your careers, ask what you like about yourself and what you are good at and find a way to incorporate these things into your career. If you do, I suspect you will find the same satisfaction and joy in your lives that I have.”


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