April 19, 2022

Board Spotlight: Jeffrey Durmer, MD, PhD

By Clara Schlemeyer, Program Coordinator, RLS Foundation

I spoke with Dr. Jeffrey Durmer, a former member of the RLS Foundation’s Scientific and Medical Advisory Board and current member of the Foundation’s Board of Directors. He also serves on the Sleep Disorders Research Advisory Board (SDRAB) of the National Institutes of Health, and that just begins to list the important professional contributions he makes to the health and wellbeing of RLS patients. Dr. Durmer was awarded an RLS Foundation research grant for his work on pediatric RLS and is currently the chief medical officer at Nox Health, a leader in global sleep health solutions.

Q: How and why did you get involved with the RLS Foundation?

A: I was a pediatric and adult sleep researcher and physician, presenting a poster about my research at the 2003 American Academy of Sleep Medicine meeting. I had studied pediatric RLS and ambulatory leg monitoring, which was the first identification of kids with leg movements in multiple day studies. That’s when Karla Dzienkowski found me at my poster and peppered me with questions about RLS and kids, because she was trying to find solutions for her daughter. At that point she wasn’t even a member of the Board of the RLS Foundation; she was just a mom looking for answers. I introduced her to Dr. Dan Picchietti, a pediatric neurologist with experience treating RLS. Karla and I stayed in touch for many years after that, and she suggested that I get involved with the RLS Foundation as a member of the Scientific and Medical Advisory Board. I received an RLS Foundation grant for pediatric RLS research while I was at Emory University working on phenotyping and genotyping in Iceland and Atlanta. That experience really opened a lot of doors for me in terms of meeting new people in the RLS research world. It kindled in me a desire to be more involved with the RLS Foundation.

Q: How has your experience changed from being on the Scientific and Medical Advisory Board (SMAB) to serving on the Foundation’s Board of Directors?

A: The SMAB is focused on research and the direction of clinical care, and how to marry those two together to advance the Foundation’s mission. The Board of Directors takes a much broader view and considers how to maintain the health of the organization. The Board doesn’t focus solely on patient care. We look at the politics involved in access to patient care–for instance, the access to opioids for refractory cases of RLS. The financial and overall health of the organization is another big focus for the Board, as we try to align our mission with the changes that are currently happening in healthcare.

Q: What do you enjoy most about working with this Board?

A: I really love the comradery of a volunteer board. No one here is looking for anything but a good solid foundation on which to build the organization on behalf of the patients with RLS. Our Board members come from very diverse backgrounds, from someone like me who has done RLS research to people with previous careers in business and education. Some of us are retired and some are currently in the workforce. Some have RLS and others who don’t have RLS are nonetheless dedicated to finding a cure for RLS. This Board has a passion and compassion for people with RLS. That’s what the Board is all about, and I think that’s the best part of serving on this Board.

Q: Do you have any words of advice for those considering Board service?

A: Don’t be shy! It’s not only for people with advanced degrees or board experience. It’s about wanting to serve and having the bandwidth and the desire to effect change and wanting to spend time with people with that same mindset. All you have to do is open the door!

Q: What do you hope to see for the future of the RLS Foundation?

A: The one thing I’m really looking forward to is broadening the message of RLS to reach other patient populations that are suffering with RLS but have primary care physicians who don’t know how to treat it. I’m interested in taking a lead in getting the message out to those in the younger generation through the internet, social media, and even telemedicine.

Q: Your focus is on sleep. What should the RLS community know about sleep?

A: Well, the RLS community knows a lot about sleep deprivation. I think one of the most important things to know about sleep is that culturally, in our country, we are not taking sleep seriously as a fundamental requirement for our health. We have turned the corner on a few things related to the importance of diet and exercise, but that hasn’t happened for the subject of sleep. In fact, we are sleeping less and less as a culture and are reaping the outcome of poor sleep in terms of chronic disease, rising healthcare costs and workplace accidents. Sleep itself is a national security issue. We are in the midst of a cultural epidemic of poor sleep, and RLS is one reason for poor sleep. Good sleep hygiene consists of a routine and takes into consideration sleep duration, timing and quality. The RLS community needs to know this, and so does everyone else!