Q&A With Duke ALS Clinic Founder + Director

Clothing collab changes lives one outfit at a time.

Fashion is for everyone—and no one embodies that notion more than Dr. Richard Bedlack. Known for his funky threads and cutting-edge Amyotrophic Lateral Sclerosis research, the Duke ALS Clinic founder/director is weaving his passion for fashion to inspire and connect with his patients. 

Fashion isn’t always functional. As ALS progresses, mobility and dexterity become limited, making everyday tasks like getting dressed more challenging. In recognition of ALS Awareness Month, we chat with Bedlack about his seamless blend of science and style, the importance of hope, and his partnership with NC State design students to create accessible clothing for those living with ALS.

► How has fashion shaped your patient connections? As a kid, I realized bright, fun clothing is like a suit of armor, allowing me to retain my positive energy no matter what the day brings. I also noticed it rubs off on others, making them smile. ALS is a very difficult disease, with most patients experiencing rapidly progressive disability and shortened survival. Despite 100 years of research, we still don’t have enough effective treatments. I’ve come to believe hope is a treatment—studies have shown, when faced with a disease, more hopeful people tend to do better medically. Fashion is part of my approach to hope boosting (I call [it] “stitching strength,” and I have a movie coming out about it soon). Fun clothing helps me stay more positive and resilient in my work as an ALS doctor, and it’s something my patients look forward to seeing too. It creates a great first impression.

► From lab to lookbook: How has ALS research shaped your style?Just as I’ve found unique ways to incorporate fashion into my work, I’ve also found ways to incorporate my work into the clothing I wear. My collection includes a custom suit from Jerry Lee Atwood, who designed for Post Malone and Orville Peck. The suit is covered in various symbols representing lessons I’ve learned from people living with ALS. I also have a blazer from Manuel Cuevas, who designed for Johnny Cash, Elvis Presley and Lady Gaga—among many other rock stars. This one is covered in symbols representing families who’ve helped me on my quest to end ALS. 

► Hurdles in making truly inclusive garb? Getting mainstream designers to understand why this topic is important. We believe a designer who starts making clothing that is both stylish and adaptive is going to tap into a huge market. While there are only about 30,000 people living with ALS in the U.S. (300K worldwide), there are tens of millions with a variety of disabilities who are likely looking for cool clothing that is adaptive. 

► What sparked the NC State design collab? I try to get to know my patients in and out of the clinic. Over the past few years, I’ve met some who share my love for fashion. But as their ALS progressed and their mobility decreased, it became harder—and eventually impossible—for them to wear the clothes they loved. I thought, here’s something ALS shouldn’t be able to take away. I reached out to the fashion school at NC State and eventually got connected to Sam Pearce, assistant professor of the practice at Wilson College of Textiles, who also has a longstanding interest in making fashion more adaptive. We set up Zoom meetings with people living with ALS so students could better understand their style preferences and new challenges in wearing their favorite clothes.

► Ripple effects of this collab? People living with ALS told me they felt ‘seen.’ They were able to wear stylish clothing made with them in mind. The students in the program have also said they found making cool clothing that is also adaptive to be easier than expected. My hope is as they go out into the workforce for different labels, they’ll carry what they learned with them.

► How has your research shifted your perspective on ALS? I’ve come to understand the power of hope. I now consider it as more than an emotion or a coping strategy. I’ve become very interested in outliers—people who do exceptionally well with ALS. Some remain very functional more than 10 years into it—and a small number even recover lost motor functions. My Duke team has recently discovered clues for explaining these in the gut microbiome and in the genes. We plan to launch new trials based on these clues later this year.

► The untold truth about ALS?It doesn’t have to define a person. We’re all so much more than the illnesses we might have. The best parts of us needn’t be touched (and can even be strengthened) in any illness: our kindness, compassion, creativity and humor.