Restless Legs Syndrome Foundation Blog

Join the RLS Foundation Board of Directors

Shape the future of RLS advocacy and research

The RLS Foundation is seeking passionate, committed individuals to join our Board of Directors. Board members have the unique opportunity to guide the strategic direction of the Foundation, support its mission and directly contribute to improving the lives of individuals living with RLS.

Board members play an essential role in governance, advocacy, fundraising and outreach. The Foundation relies on its board to provide thoughtful leadership, expand our outreach and ensure we remain a trusted voice for the patient and medical community. We welcome applicants who bring clinical expertise, lived experience with RLS, nonprofit leadership, or who have a background in business, law, finance or communications. Many of our Board members have been diagnosed with RLS or are RLS physicians, however this is not a requirement.

Board service is both a responsibility and a privilege. In addition to participating in board meetings (virtual and in-person), members are expected to serve on at least one committee and actively support the Foundation’s programs and goals. This includes contributing time and resources and acting as an ambassador for the Foundation within your professional and personal networks.

Serving on the RLS Foundation board is a meaningful way to give back and to join a dedicated team working to advance understanding, improve care, and ultimately find a cure for RLS. If you are interested in learning more about board membership, please contact info@rls.org for more information.

Meet the RLS Foundation's Newest Board Members!

The RLS Foundation is excited to introduce the newest members of the Board of Directors! As the Foundation’s reach expands in the public and medical realms, so does its leadership.

Jim Flaniken

Indianapolis, IN

As a retired senior executive in the food sector, Flaniken has extensive experience in business strategy and strategic planning, marketing and brand management, process reengineering, budget administration and cost control. Flaniken has RLS, noting that the Foundation has served as a “lifeline” of invaluable information and support for him in managing the disease. He was attracted to the Foundation’s mission to improve the lives of those with RLS, as he shares a passion for increasing awareness and expanding the Foundation’s impact by helping others who are also coping with RLS.

Kunal Agarwal, MD

Sarasota, FL

Agarwal is board-certified in family medicine, obesity medicine and sleep medicine. He received his bachelor’s degree with honors in neuroscience from Johns Hopkins University and his medical degree from Ross University School of Medicine. He is a fellow of the American Academy of Family Physicians and the American Academy of Sleep Medicine, and a member of the Obesity Medical Association. As a practicing physician, Agarwal is committed to advocating for RLS patients, as well as educating providers and patients about the disease and proper management. In his free time, he enjoys playing tennis, traveling, spending time with family and friends, and eating good food.

Bill Wendt

Portland, OR

Wendt manages a small construction group that provides a range of services for technology companies. Wendt grew up in central Illinois and attended the University of Illinois in Champaign. After graduating, he was hired by Intel Corporation and moved with his family to Portland, where he spent the next 35 years working in the wafer fabrication facilities at Intel. Wendt has suffered with RLS since his teenage years and credits the Foundation with helping him find a doctor who correctly diagnosed his augmentation. Wendt serves as an active Foundation volunteer leading monthly RLS Virtual Support Group meetings.

Avinash Aggarwal, MD

Pittsburgh, PA

With over 28 years of experience in neurology, Aggarwal is a distinguished physician specializing in neuromuscular and sleep disorders. As the founder and director of the Restless Leg Syndrome Quality Care Center at the University of Pittsburgh Medical Center, Aggarwal is dedicated to providing exceptional care for patients with RLS and related conditions. Her clinical interests include the treatment of RLS and other sleep and neuromuscular disorders, as well as specializing in the use of Botox in the treatment of headaches and other neurological conditions.

Donnie Kee

Diboll, TX

Kee is retired after more than 30 years in the telecommunications industry with Consolidated Communications where he held positions of Central Office Engineer, Separations Traffic Engineer, Rates and Cost Supervisor, Manager-Financial Analyst, and Product Manager. He also spent 9 years in the insurance industry with Farmers Insurance where he managed a successful agency and provided securities investing for his clients. Kee’s passion lies in giving back to the community. He lives with RLS and joined the Foundation many years ago. After seeing the benefits that the Foundation provided to those seeking help, he knew that he wanted to be a part of this organization so that he could help others in some way.

Dr. Jeffrey Durmer Joins Board of Directors

The RLS Foundation is pleased to announce that Jeffrey Durmer, MD, PhD, has joined the Board of Directors. An RLS expert, Dr. Durmer has served on the Foundation’s Scientific and Medical Advisory Board since 2006 and been a key participant in the Foundation’s advocacy efforts in Washington, DC.

Dr. Durmer is a co-founder and chief medical officer of FusionHealth, a healthcare workflow technology company that develops solutions for people with sleep disorders and sleep problems. Dr. Durmer’s research focuses on applying the neuroscience of sleep and circadian rhythm biology to workplace fatigue and well-being programs, as well as the use of technology-enabled, population sleep-health delivery systems. His past work includes uncovering subcortical visual systems involved in blind sight, and developing the first standardized clinical interview tool for pediatric RLS.

“We are delighted to welcome Dr. Durmer to the Board of Directors,” says Lewis Phelps, chair of the board. “He has a wealth of experience as an RLS clinician, a research scientist and a corporate executive. He will add an extraordinary set of skills to our deliberations. On behalf of the board, I’m pleased to welcome him to the leadership of the Foundation and look forward to having him with us as the Foundation continues its important work.”

Greg Oberland Joins Board of Directors

The RLS Foundation is pleased to welcome Greg Oberland as the newest member of the Board of Directors. Oberland brings to the Foundation extensive work and nonprofit experience that will serve him greatly in his duties as a board member.

Oberland was born and raised in Chicago and received his undergraduate degree from the University of Notre Dame. He earned a law degree from Georgetown University and worked for Northwestern Mutual, a financial services firm based in Milwaukee, for 36 years, starting as an attorney and eventually switching to the business side of things, where he worked his way up to the position of president. Over the past 20 years, Oberland has served on five other nonprofit boards and has occupied the role of president of the Milwaukee Red Cross of Wisconsin, and the Milwaukee Public Library Foundation. He currently is president of the Milwaukee Repertory Theater.

Oberland is a long-time member of the RLS Foundation and says, “the RLS Foundation was like a lifeline for me in that it helped me realize that I wasn’t out of my mind and that this was a real medical condition. I have been a subscriber and donor to the Foundation for many years. Now that I am recently retired, I feel I have the time and talent to give back to the Foundation in order to advance its mission.”

RLSF Board Chair, Lewis Phelps receives Ekbom Award

The RLS Foundation has named Lewis Phelps as recipient of the 2018 Ekbom Award. This prestigious award honors individuals who have enhanced the lives of people with RLS and made significant contributions to the RLS Foundation. Phelps, who is currently chair of the Board of Directors, has served for a total of 10 years on the board, including two terms as chair, in 2006–2008 and 2016–present.

“We are very grateful for Lew’s years of service to the Foundation and to the RLS community,” says Christopher J. Earley, MB, BCh, PhD, FRCPI, who presented the Ekbom Award to Phelps on Sept. 28 at the Board of Directors annual meeting. Dr. Earley is chair of the RLS Foundation Scientific and Medical Advisory Board. “During Lew’s tenure on the Board of Directors, he has guided the organization through important milestones such as the Opioid Advocacy Initiative, led the restructuring of the organization and built a reserve to ensure adequate funding for research and future organizational needs.”

The RLS Foundation established the Ekbom Award in 1998. The award is named for Swedish neurologist Karl-Axel Ekbom, MD, who published early reports on the disease and first named it restless legs syndrome.

Past recipients include Dr. Christopher Earley (2017), Roberta Kittredge (2016), Dr. Michael Silber (2014), Pickett Guthrie (2008), Dr. Wayne Henning, posthumously (2008), Robert Waterman (2007), Sheila Connolly (2005), Robert Balkam (2003), Cate Murray (2001), Dr. Richard Allen (2000) and Dr. Arthur Walters (1999).

The RLS Foundation is grateful to the Ekbom family for allowing their name to be used for this distinguished award in honor of Dr. Ekbom and his work.

“The Foundation has benefitted greatly from Lew’s two tenures as chair of the board. The early 2000s were a time of economic difficulty in the United States, and Lew’s communications and public relations background helped to guide the organization through key strategic planning. Under his leadership, the board instituted a reserve to ensure adequate resources to fund the Research Grant Program and RLS Quality Care Centers, while maintaining sufficient resources for operational expenses. As executive director of the Foundation, I have worked closely with Lew to reorganize the financial reporting of the organization, reinvigorate our Research Grant Program and expand our network of certified RLS Quality Care Centers. In 2015, the Foundation committed to a Year of Augmentation to raise awareness in the patient, physician and public realms about augmentation, a common, underdiagnosed side effect of dopaminergic therapy. The huge success of this educational outreach led to a second-year expansion of this program. Under Lew’s leadership, in 2017 the Foundation and the RLS community began an awareness and advocacy campaign to ensure access to opioids for severe cases of RLS and to increase federal funding for RLS research.” – Karla Dzienkowski, RLS Foundation Executive Director

“Congratulations, Lew, on this well-deserved award! I feel privileged to have worked alongside you as you advocated for more global awareness of RLS. Your years of service to the Foundation have been an inspiration to all of us. You have been a mentor to me, and I have been grateful for your continued leadership in helping others as we search for a cure.” – Bobbie Kittredge, RLS Foundation support group leader, former board member, and Ekbom Award recipient

“Congratulations to Lew. Over the years, your steady leadership, wisdom, patience, ability to bring people together, sense of humor and gracious demeanor all helped make the RLS Foundation board a strong, functioning group. It was a privilege to work with you during your first tenure as board chair. I especially remember you as a calm, experienced leader who guided us toward a safe resolution when faced with a challenge. This award demonstrates how much we all appreciate the generosity with which you have shared your time and talent.” – Pickett Guthrie, RLS Foundation founding member, former executive director, and Ekbom Award recipient

Opioid Study Still Seeking Participants

Lewis Phelps is current chair of the RLS Foundation Board of Directors. He is a strategic public relations consultant with Sitrick And Company, a Los Angeles-based firm that specializes in handling crisis situations. Previously, Phelps was head of the public relations function for the nation’s second largest electric utility and for two major U.S. rail transportation companies. Early in his career he was a staff reporter for the Wall Street Journal for 10 years.

Phelps has extensive non-profit board experience in addition to a prior six-year term on the RLS Foundation board. He has chaired United Way campaigns in two cities, co-founded an anti-litter organization in Roanoke, Virginia, was on the board and executive committee of the California Science Center for 15 years, and has served as chair of the board of Pasadena Heritage, one of the nation’s leading local historic preservation organizations.

I encourage members of the RLS community to participate in the National RLS Opioid Registry, an important new study that has been funded by the RLS Foundation and is being conducted by John Weyl Winkelman, MD, PhD, and Chief of the Sleep Disorders Clinical Research Program at Massachusetts General Hospital. He is an internationally leading RLS researcher and long-standing member of the Foundation’s Scientific and Medical Advisory Board.

The study seeks to track up to 200 RLS patients who are currently being treated with an opioid medication, and who formerly were treated with a dopamine enhancing drug such as Mirapex or Requip. As of early March 2018, the study is more than halfway toward its enrollment goal.

There’s no monetary payment for participants, but the psychic rewards are large. By joining the study, you can help to significantly increase the body of scientific information that is available on the effectiveness of low dose opioids to treat RLS and the potential side effects. You can also learn how your personal experience with opioids compares with other RLS patients.

While some solid scientific studies address these questions, the Mass General study will expand our knowledge about the efficacy and safety of opioids to treat RLS. Such information will be valuable in coming months and years as the RLS Foundation grapples with the challenges that RLS patients are facing due to growing restrictions on use of opioids.

Addiction is obviously a huge and growing problem in the US. However, available clinical data suggest that using low doses of opioids to treat RLS will not contribute meaningfully to the addiction epidemic.

I can speak from personal experience in saying that participation in the RLS Registry is not difficult, time consuming, or unpleasant; I have become one of the study’s subjects. When you enroll, a researcher will conduct a 45-minute telephone interview with you, at a convenient time. They will ask about your current and former medications used to treat RLS, and your experience with them. The researcher who conducts the interviews is courteous, professional, and pleasant.

Following the initial interview, you will be asked to complete an online survey that takes about 20 minutes, and then you will be asked to complete a similar online survey every six months for up to five years. Your answers to the questions are completely confidential, and all information is kept on a secure hospital database that is only accessible by Dr. Winkelman and his research coordinator.

Each year of the study, you will receive a personal report about the overall results of the study to date, as well as a comparison of your own experience with opioids compared with the study group overall. For example, you will be informed whether your RLS symptoms are controlled better, worse, or about the same as the study group overall.

If you have RLS and are currently being treated with opioids, please do yourself and everyone else who has RLS a favor by joining the study. To do so, simply send an email to rlsregistry@partners.org, in which you identify yourself, provide contact information (email and phone number) and indicate that you wish to volunteer as a study subject.

Thanks,

Lew Phelps, Chair of the RLS Foundation Board of Directors

New Member Joins RLS Foundation Scientific and Medical Advisory Board

We are pleased to welcome a new member to the RLS Foundation's Scientific and Medical Advisory Board (SMAB), Kathy Richards, PhD, RN, FAAN! Richards is a research professor at The University of Texas at Austin, School of Nursing. As a UT Austin PhD graduate, Kathy has conducted sleep research in Alzheimer's disease for 20 years, and received over $25 million in NIH funding to support her research endeavors.

"I am looking forward to working with others to help advance the science of RLS, especially related to older adults," Richards said.

Her newest project is the NightRest project and the Behavioral Indicators Test for Restless Legs Syndrome in older adults. In partnership with Christine Kovach, PhD, RN, FAAN, a research professor in aging at the Jewish Home and Care Center at The University of Wisconsin-Milwaukee, Richards received a $3.9 million five year grant from the National Institute on Aging to improve the treatment of nighttime agitation in those with Alzheimer's disease. They hypothesize that RLS may be a cause for nighttime agitation and sleep disturbance in these individuals. This study marks the very first time that a new diagnostic tool will be used in research on nighttime agitation.

"Dr. Richards' expertise in sleep research, particularly as regards aging and the elderly, will be invaluable to the Scientific and Medical Advisory Board," SMAB Chair Christopher Earley, MB, BCh, PhD, said. "We are lucky to have her join our team."

Thank you, Kathy, and welcome!

New Member Joins RLS Foundation Board of Directors

We are pleased to welcome a new member to the RLS Foundation's Board of Directors, Steven McCann!

"Introducing Steve is my particular privilege, and the phrase that keeps coming to mind to describe him is the paradoxical ‘servant-leader,’" said Linda Secretan, RLS Foundation support group leader, fellow board member and head of the board's Governance and Nomination Committee. "Steve’s enthusiasm for whatever work lies before him hums like an undercurrent in his conversations. Now the RLS Foundation is the willing beneficiary of both his energy and professional experience."

Steve is a seasoned sales executive, specializing in new business development. Currently he is Director of Partnership Development at MECLABS Institute and Marketing Sherpa, and has been involved with Big Brothers/Big Sisters of America for eight years as both a Big Brother and as a member of the Board of Directors.

"I have been an early-onset 'patient,' experiencing RLS since childhood," Steve said. "And, as is common, it progressed with age. I am excited to be part of the RLS Foundation, [who provide support] in terms of education, awareness, action, and the path to a cure."

Steve was initially connected to the RLS Foundation ten years ago by our west Florida volunteer Ed Murfin, after calling him to find additional support for dealing with his RLS. According to Steve, Ed is "a great example of the giving, helping, supportive attitude displayed by this Foundation."

After staying in touch for a number of years, Ed then introduced Steve to the current RLS Foundation Executive Director, Karla Dzienkowski, RN, BSN. After seeing his passion for the cause and his leadership experience, Karla suggested that Steve consider getting involved with the organization's mission at a higher level - with the Board of Directors.

"I had no idea that helping him deal with his terrible RLS symptoms would result in him becoming a young business man on the Board of Directors of the RLS Foundation," Ed said. "Though I never met him personally, I recognized him as a brilliant man in the business world who was being caught in a strangle-hold by his RLS. I helped him win some battles and suffered with him through some lost battles, all over the telephone or email... Imagine my thrill when Linda Secretan informed me that she had personally nominated Steve as the newest member of the Board of Directors and credited me for his being there."

Steve hopes that his personal experiences with RLS can help bring additional insight to the board.

"[After] all those years of sleepless nights, I am most familiar with this condition and feel that I have at least my experience to offer someone else," Steve said. "I intend to share the awareness message, and use my passion on this subject to reach others and help the quality of life of today's sufferer to improve. With knowledge can come an improved life. I am an example of this. I look forward to involvement that makes a positive difference."

Welcome to the team, Steve!

Foundation Welcomes Third New Board Member in 2017

We are pleased to welcome a brand new member to the RLS Foundation's Board of Directors, Carla Rahn Phillips, PhD!

Dr. Phillips was born in Los Angeles, California. She earned her B.A. in History at nearby Pomona College in Claremont and her Master’s and Ph.D. degrees at New York University. She then joined the History Department at the University of Minnesota and taught there for more than 40 years, retiring in 2013 as the Union Pacific Professor in Comparative Early Modern History.

Her teaching and research have focused on Europe, with an emphasis on Spain and its overseas connections in the period from the late 15th to the late 18th centuries. Among her publications are The Struggle for the South Atlantic: The Armada of the Strait, 1581–84, editor and translator (London, 2016); The Treasure of the San José: Death at Sea in the War of the Spanish Succession (Baltimore, 2007); “Visualizing Imperium: The ‘Virgin of the Seafarers’ and Spain’s Self–Image in the Early Sixteenth Century,” Renaissance Quarterly, 58, No. 3 (Fall 2005): 815–856; "'The Life Blood of the Navy': Recruiting Sailors in Eighteenth–Century Spain," The Mariner's Mirror 87, No. 4 (November 2001): 420–445; "Time and Duration: A Model for the Economy of Early Modern Spain," American Historical Review 92 (June 1987): 531–62; and Six Galleons for the King of Spain: Imperial Defense in the Early Seventeenth Century (Baltimore, 1986).

In addition, Dr. Phillips has published three books and numerous articles with her husband, William D. Phillips, Jr., among them A Concise History of Spain (Cambridge, 2010, 2016); Spain's Golden Fleece: Wool Production and the Wool Trade from the Middle Ages to the Nineteenth (Baltimore, 1997); and The Worlds of Christopher Columbus (Cambridge, 1992).

"A distinguished academic and scholar of international stature, Dr. Phillips would be an asset to any organization," said Linda Secretan, RLS Foundation support group leader, fellow board member and head of the board's Governance and Nomination Committee. "We are pleased and honored that she has chosen to join our board. We hope to tap into her experience and acumen to make some RLS Foundation history of our own."

Now retired and living in central Texas, Dr. Phillips continues her research and writing, as well as being active in several professional organizations. Over the years she has held major offices in the American Historical Association (15,000 members), the Association for Spanish and Portuguese Historical Studies, and the Forum on European Expansion and Global Interaction, among others.

She was diagnosed with RLS more than 20 years ago, but the symptoms are currently controlled with medication. She is very pleased to join the board of the RLS Foundation in order to participate in its important work.

Welcome to the team, Dr. Phillips!

RLS Foundation Welcomes New Board Member

We are pleased to welcome a brand new member to the RLS Foundation's Board of Directors, Shalini Paruthi, MD! She is an energetic practitioner and scientist with a unique perspective on sleep medicine.

Dr. Paruthi practices in St. Louis, MO, where she sees patients of all ages. She has a particular interest in sleep disorders of childhood – obstructive sleep apnea, insomnias, narcolepsy, and – of course – restless legs syndrome. Not only do her patients benefit from her extensive study; she is a teacher as well – as an adjunct associate professor of internal medicine and pediatrics at Saint Louis University School of Medicine.

"We are grateful for the participation of Dr. Shalini Paruthi, and her willingness to share her most certainly unique, vastly informed and inquisitive point of view with the RLS Foundation as a member of the board," said Linda Secretan, RLS Foundation support group leader, fellow board member and head of the board's Governance and Nomination Committee.

Dr. Paruthi is board-certified in Sleep Medicine and Internal Medicine, and received her medical degree from The University of Missouri-Kansas City School of Medicine. She went on to complete her internal medicine residency and sleep fellowship at The University of Michigan.

Dr. Paruthi’s interest and energy extend to research pursuits as well, extending our understanding of sleep and its many disruptions and diseases. She is Co-Director of the Sleep Medicine and Research Center at St. Luke’s Hospital in St. Louis. She has contributed widely to activities of American Academy of Sleep Medicine (AASM) chairing sleep focused conferences, participating in task forces, serving on committees, including the Education Committee and national SLEEP meeting Program Committee. Currently she is on the editorial advisory board for Sleep Review: the Journal for Sleep Specialists.

Welcome to the team, Dr. Paruthi!