Restless Legs Syndrome Foundation Blog

RLS Foundation Welcomes New Board Chair, Dr. Shalini Paruthi

By Clara Schlemeyer, RLS Foundation Program Coordinator

I recently had the pleasure of interviewing Dr. Shalini Paruthi, who joined the Foundation’s Board of Directors in 2018 and became Chair this year! Dr. Paruthi also dedicates her time to the AASM (American Academy of Sleep). She is certified in both internal medicine and sleep medicine and has extensive expertise in treating both pediatric and adult patients, but her particular interest is in sleep disorders of childhood – obstructive sleep apnea, insomnia, narcolepsy, and – of course – restless legs syndrome. While treating her patients, she is also educating future doctors at Saint Louis University School of Medicine. Her willingness to teach, treat, and share her knowledge is inspiring.

Q. What was your motivation to get involved with the RLS Foundation, and why did you choose to stay involved?

A. My patients are my biggest motivators! I specialize in sleep disorders and have a specific interest in RLS, because I am also an RLS patient. It’s something that I see every day that is easily misunderstood, and there is not enough good, reliable, truthful information available for people. I think one of the most important things that physicians can do is to advocate for our patients. When Karla Dzienkowski reached out to me knowing that I had an interest in RLS, and that my primary focus is on pediatric sleep disorders, it was an excellent opportunity for me to bring my advocacy to the Foundation.

Q. As a physician who specializes in sleep disorders, what knowledge and skills do you hope to bring to the Board as you step into your role as chair?

A. One of the best parts of my day is that I am a teaching physician. I previously taught full-time at Saint Louis University and now am at Saint Luke’s Hospital in Saint Louis. In my role at St. Luke’s, I continue to teach rotators about sleep disorders. I want to make sure that they have a very strong knowledge of all the different sleep disorders, including RLS, which can be very difficult to recognize and diagnose. Sometimes patients cannot articulate their exact symptoms or the symptoms overlap with other medical disorders. As a teaching physician, in every patient visit, I am not only educating the patient but also educating the learners rotating with me.

Additionally, I chaired the program committee at the American Academy of Sleep Medicine for two years. The program committee plans the annual national SLEEP meeting, during which nearly 5,000 physicians, nurses, sleep technicians and sleep researchers gather to share knowledge and learn from one another. That experience enabled me to help with the Foundation’s educational events, such as our virtual Summits and our in-person Patient Symposium, where I served as moderator and educator.

Q. What is your favorite part about serving on this Board?

A. My fellow Board Members! I have met so many people with such different and diverse talents, backgrounds and perspectives, and every one of them is so dedicated to our mission. They want nothing more than to make sure that we are increasing RLS awareness, improving treatments and looking for the best research opportunities. Each Board member is focused on improving RLS diagnosis opportunties and ensuring wider availability of proper treatment. I just see so much passion, dedication and really great teamwork.

Q. How has living with RLS fueled your passion for helping the RLS community?

A. Having RLS, and at times suffering terribly from it, has really opened my eyes to the lack of knowledge surrounding RLS. I am very passionate about educating people about RLS and that it is a serious disorder. It can be so disruptive to a person’s quality of life or their ability to sleep well at night, which then affects their daytime function. For me, it has increased my compassion and empathy for others who suffer from RLS, and I want to do as much as I can within the RLS Foundation to increase awareness and help others know there is hope in finding a treatment that works for them. In addition, we must remind everyone that RLS is also a pediatric disorder with many young children or teenagers having RLS as their cause of insomnia.

Q. What are your future goals and aspirations for the Board?

A. The future goals for the Board are very clearly and appropriately tied to our mission. I hope to increase awareness about pediatric RLS. When a child comes to see me in the office, their parents have already tried all sorts of good sleep hygiene and techniques they have found on the internet, or followed suggestions from family and friends. Yet, they can’t understand what is being so disruptive to their child’s sleep. Often, no one has asked them questions about uncomfortable sensations in the legs or those urges to move in the evenings and the restlessness that comes along with it. Once we diagnose their RLS and begin treatment, they see a huge improvement in their child and the whole family’s interactions. As a Board we are making progress in education, and we must recognize that RLS affects the lifespan, from young children all the way up to older adults.

It is incredibly important for us to request proposals for research projects that can be funded. We have an amazing group of donors who understand just how much RLS affects others, and our best bet is to continue to fund high-quality research that will get us closer to finding better treatments and a cure for RLS. I want to express my deep gratitude for the work of the staff at the RLS Foundation; Karla, Zibby, Clara and Adrianna are an absolutely amazing, hard-working group of dedicated women who really care about people suffering from RLS.

Q. What is your biggest piece of advice for those struggling with their RLS?

A. People are their own best experts; we can recognize when something is not right within our bodies. When you don’t get a satisfactory answer about a problem you are having, it doesn’t mean that your doctor does not care or that they are dismissing you. It may just be that they don’t know enough about RLS and may not realize what an impact it is having on your quality of life. If at first you see a clinician who does not quite understand what you are saying, it does not mean that all doctors do not know about it, it just means you need to keep looking until you find the right physician who does know about RLS. Sometimes that means doing a little bit of detective work. Most neurologists should know about RLS, and even if they are not experts, they may be able to refer you either to a movement disorder specialist within neurology or directly to a board-certified sleep physician at an accredited sleep center. Being your own advocate and not settling for the first answer that you get – just being true to your body – is my best piece of advice on RLS.

To view a list of healthcare providers organized by state who have come forward expressing an interest and knowledge in treating RLS or learn more about RLS Quality Care Centers, visit www.rls.org.

Board Spotlight: Paul Rochester

By Clara Schlemeyer, Program Coordinator, RLS Foundation

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

A: A friend named Bob Waterman introduced me to the Foundation. You know Bob as a former chair of the board and founder of the RLS Foundation Research Grant Program. Bob and I were discussing different things when I mentioned that I had restless legs syndrome. He kind of perked up and said, “Oh, I have that, too!” So, we talked about our experiences for a while, and then he said, “I know an organization that could really use you on their board,” and that was the RLS Foundation. Bob invited me and my wife to visit with members of the board. I was very interested in the work they were doing, and Bob convinced me that my business experience would be a great addition. That was about five years ago.

Q: How has joining the board impacted your RLS journey?

A: You certainly know that you’re not alone! I have learned so much about the disease, the different treatments and the promising research being conducted. I finally switched medications to a therapy that involves opioids. I was very nervous about doing so, especially with the stigma surrounding opioid use. I learned that many others were taking opioids for their RLS, including other board members, which made me feel more comfortable. I have met a lot of amazing physicians as part of the board process, Dr. Chris Earley included. In addition, I have had the opportunity to speak with some of our very generous donors to thank them for their support. I always enjoy having a conversation with them about their experience to understand how the Foundation can help in their particular situation.

I don’t think the world understands RLS. When I tell someone that I have RLS, they often don’t know what it is. When I talk to someone who has RLS, especially a donor, they will tell me how miserable they’ve been and what they have been through to find a treatment plan that works for them. Serving on the board and speaking to others with RLS, you certainly appreciate that this is a very distressing disease, and the ramifications affecting daily life are often misunderstood.

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

A: It is so great to be around smart people who are passionate and share a common cause. That’s the way I see it. Carla Rahn Phillips, our current chair, and Karla Dzienkowski, our executive director,are both incredible and very driven. It is nice to be around people who are working hard to change the public perception of RLS, to educate the medical community; and are committed to empowering those with RLS with the information they need to advocate for themselves.

Q: How has your experience with managing high-tech companies helped you on this board?

A: Well, it’s different in many ways, but we have a lot of the same challenges. At the Foundation, we have a very different product; information is our product. As for my high-tech management experience, I hope I have contributed to the Foundation’s vision, mission and process of setting lofty goals.

Q: Where do you see the board in 2022 and beyond?

A: I expect some new members to join. We lost two great board members last year who passed away: Bob Waterman, former chair emeritus; and Ron Anderson, who was new to the board but brought enthusiasm and fresh ideas. In addition, Ron Barrett rotated off the board after serving two terms as treasurer. While some people may drop off after multiple terms, new folks will join and bring a whole new perspective. We have all missed holding meetings in person. I am hoping to attend an in-person meeting, maybe this year, and looking forward to it!

Paul Rochester is an angel investor, public and private board member, and mentor to CEOs from high-tech companies and founders at all stages seeking growth and significance. He is a trusted business advisor to numerous companies and active board member to another half dozen. Rochester brings to the board his business experience, mentorship and leadership skills, which are all invaluable to the RLS Foundation. We recently spoke about his experience on the RLS Foundation Board of Directors.

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!

Support Group Leader and Secretary, RLS Foundation Board of Directors

I recently had the pleasure to sit down and chat with one of the extraordinary members of our Board of Directors, Linda Secretan. Since she became a Foundation member in 1997, she has served the RLS community in so many ways. From starting a support group in Idaho, to serving as the RLS Foundation’s representative on the Sleep Disorders Research Advisory Board of the National Institutes of Health, to her leadership roles on the Foundation’s Board of Directors, she seems to do it all with compassion and a smile. During her six years of service, Secretan has served as secretary of the Board and chair of the Governance and Nomination Committee, two roles critical to the effective functioning of the Foundation.

Linda’s lifelong struggle with RLS and her experience as an educator and life coach make her an invaluable member of the RLS Foundation’s Board of Directors.

Q: How did you get involved with the RLS Foundation’s Board?

A: I was a long-time member of the RLS Foundation and had just moved to Idaho, transitioned careers and had a lot more free time and flexibility. I spent a long time thinking about just the right volunteer commitment where I could best spend my time and resources. Then I realized that the RLS Foundation had been essential to my well-being for many years. I relied on the Foundation for information, encouragement and general support in dealing with my RLS. I noticed that there wasn’t a support group leader in Idaho, so I thought I would apply, and my application was accepted! A generous donor had given the Foundation a grant to create educational materials specifically for kids and adolescents. Since Karla Dzienkowski, executive director at the Foundation, knew of my background in education, she asked me to help out with that project, and I was delighted to volunteer my time and experience with education and RLS. Then I got a call from Karla and Jacci Bainbridge, former chair of the Board, to ask me if I would consider becoming a board member. I was thrilled to be asked. I obviously had to ask questions and think hard about it, but there was no way I could turn them down. It was such an amazing opportunity to grow closer to the organization, learn more and maybe offer more to an organization that had given me so much.

Q: How has joining the Board affected your RLS journey?

A: First of all, it is very exciting to be on the Board, because you tend to hear about things first. You understand what is happening with the Scientific and Medical Advisory Board; when any research reports are published, we are the first to know. The Board is kept updated on all of the advocacy efforts, and that gives me a lot of insight and hope. Being on the Board reminds me that no matter how my own symptoms wax and wane – as they do, no matter how many regimens that I try – there is always a group that has my back. The Board is not just a bunch of names on a piece of paper, but people who are really interested in investing in and improving the lives of people with RLS. Serving on the Board makes my RLS more bearable, brings me hope and keeps the mission front and center in my mind.

Q: How has your service as a support group leader helped you during your time on the Board?

A: I consider myself a patient advocate serving on the Board. My time as a support group leader is so beneficial to my board service, because I have the opportunity to talk to many RLS patients to understand their concerns and their difficulties. I am able to be their advocate in board discussions and decisions that affect the people we serve, our members.

Q: How has your experience as a life coach helped you on the Board?

A: Any good coach begins with the premise that clients are creative, resourceful and whole – always approaching things from an awareness of great humility and curiosity. I think that also makes a good board member. We must be curious and assume the people that we deal with are creative, resourceful and whole, except that they have this interesting but limiting disease. Knowing that we are all sound people, we can make a difference, we can change, and we can learn. Always be curious, because when you are curious you keep your mind open.

Q: You chair the Governance and Nomination Committee. What does that involve?

A: As the Governance Committee, we are guardians of the bylaws. We are charged with making sure that, as a Board, we are doing right by ourselves and adhering to our own principles and standards. The other part of this committee involves nomination. As the Nomination Committee, we are always looking for people who are interested in board service. It is our job to seek out members of the community, Foundation members or individuals with leadership qualities. It takes passionate people to do the work. We have the best executive director in the world, but ultimately the Board is responsible for making some important decisions. We must make decisions about how to spend and allocate the resources available.

Q: What do you look for in a board member?

A: People are surprised to know that not all of our board members actually have RLS. It is not required that you have RLS, but you must have knowledge about the disease and what it means to live with RLS. You need to be willing to commit your time and resources to this important cause. This is a working board. All board members are expected to attend each meeting. In ordinary times, we hold one face-to-face meeting a year and three to four meetings by phone or Zoom. Your financial commitment to the Foundation should be equal to or greater than any of your other charitable giving commitments. One of the key responsibilities for each board member is to thank our major donors, by either phone or letter. When a donor gives a substantial gift to the Foundation, it is important that they get recognition and sincere thanks from a board member. Often, we learn more about the concerns and interests of donors through thank-you calls. This knowledge helps us keep in touch with members and helps inform future board decisions.

Q: Are you currently looking for new board members? How do you find them?

A: We are always looking for new board members; our terms don’t last forever — which is a good thing. We want new people who have new ideas. Several of our current members attended the RLS Symposium held in La Jolla a couple of years ago. It was a great opportunity to meet new people in person with an interest in board service. Sometimes we look at people who have come to us for help, or who have become interested enough to become a donor, and we reach out to see if they may be interested in further service.

When I was considering what to spend my volunteer energy on, I realized that there are many causes that are dear to my heart. Racial justice and climate change are both important issues. I wanted to make a difference in the world, and not just for RLS. I was torn. But, here is the thing: If my RLS isn’t somewhat manageable, then I’m not able to do anything. My RLS wouldn’t be manageable without the support I receive from the Foundation. I wouldn’t know what to do, where to go, how to find information, how to manage my RLS. Once I put that into perspective, there was only one answer. I am only able to volunteer because of the support of this Foundation – the support of this Board – so I darn well better serve this Board and the Foundation, and that’s what made my decision.

Q: Do you have any advice for those who are considering the decision to join the Board?

A: Talk to us! Find out how we operate, find out how you might fit, ask questions. We are open to speaking with you. If we can provide the information that would tip the balance toward your becoming more involved, give us a call.