Restless Legs Syndrome Foundation Blog

New Support Group Leader in Texas

The RLS Foundation is pleased to welcome Lisa Marie Smith as the new support group leader in Brazoria County, Texas. Thank you, Lisa, and welcome!

Lisa Marie Smith (Brazoria County, Texas)

Looking back over the years, I realize that restless legs syndrome has been a part of my life since I was a young girl. Simple, every day activities such as car rides, going to the movies, sitting in class, or lying in bed trying to sleep were challenging for me.

I didn’t understand what was happening, why I felt like I wanted to jump out of my skin, why I couldn’t just be still, why no one around me seemed to have these same problems.

Through the years, the RLS slowly progressed to the point that I am now taking medication three times a day just to cope with the symptoms.

There have been times I felt like no one in the world could possibly understand what I was feeling, but through the RLS Foundation I have learned that there are others who suffer just as much, others who understand what I’m going through. I want to help those who are struggling with RLS by providing information, guidance, and resources to help them cope. I want to be an encourager and a support that they can turn to.

Stay up to date with all upcoming RLS Foundation support group meetings on our website or Facebook page. All volunteer support group leaders and contacts are available via phone or email to provide support. Search by city or state to find one near you!

Interested in becoming a volunteer RLS Foundation support group leader? Visit our website to learn more about the role and how to apply!

New Support Group Leader in Pennsylvania

The RLS Foundation is pleased to welcome John Alexanderson as the new support group leader in Doylestown, Pennsylvania. Thank you, John, and welcome!

John Alexanderson (Doylestown, Pennsylvania)

I was a Prudential employee in New Jersey for 30 years, and also worked as a school bus driver in Hunterdon County, New Jersey, and Bucks County, Pennsylvania for 10 years. I am currently a radio DJ (Swing and Oldies) on WRDV in Hatboro, Pennsylvania, and WOVV in Ocracoke, North Carolina. My wife and I have two daughters and two granddaughters so far. I am up at 5:20 am most days to swim laps at the YMCA in Doylestown.

I have had restless legs syndrome at least since college, more than 50 years ago. But, like many of us with RLS, I didn't know what it was until about 10 years ago. I found that others are amazingly uninformed about RLS, and I want to spread the word and empower others in the "club" to activism, education, and assurance. I refuse to suffer from RLS, but I realize what a burdensome personal issue RLS can be for we the "Chosen."

Stay up to date with all upcoming RLS Foundation support group meetings on our website or Facebook page. All volunteer support group leaders and contacts are available via phone or email to provide support. Search by city or state to find one near you!

Interested in becoming a volunteer RLS Foundation support group leader? Visit our website to learn more about the role and how to apply!

New Support Group Leader in Ohio

The RLS Foundation is pleased to welcome Rosemary Stader as the new support group leader in Columbus, Ohio. Thank you, Rosemary, and welcome!

Rosemary Stader (Columbus, Ohio)

My father suffered from restless legs syndrome for a long time. Unfortunately, years ago I did not understand the disease like I do now.

I first experienced RLS in my late 40s. For about eight years it was managed very well by pramipexole (Mirapex). When it started to get worse, I went to several physicians who kept increasing my dosage of pramipexole. No one, including me, knew that I was experiencing augmentation. I was on a high dose of medication, and my RLS was out-of-control. Finally, I found a physician who understood augmentation and knew how to treat me. My symptoms are now about 95 percent under control, and that is good enough for me!

I decided to become an RLS support group leader to advocate for the use of opioids to treat severe cases of RLS and to help educate others about the disease. Everyone with RLS should read the information and listen to the webinars available on the RLS Foundation website at www.rls.org. We must be our own advocates because so many people do not understand the disease.

Stay up to date with all upcoming RLS Foundation support group meetings on our website or Facebook page. All volunteer support group leaders and contacts are available via phone or email to provide support. Search by city or state to find one near you!

Interested in becoming a volunteer RLS Foundation support group leader? Visit our website to learn more about the role and how to apply!

New Support Group Leader in North Carolina

The RLS Foundation is pleased to welcome Erika Hallerman as the new support group leader in Cary, North Carolina. Thank you, Erika, and welcome!

Erika Hallerman (Cary, North Carolina)

Restless legs syndrome began to chronically affect my life just over three years ago. Confirming a diagnosis was a laborious process that required a great deal of patience and persistence. It is easy to become a victim of this neurological disease. I’ve lost count of the number of sleepless nights and have spent many days wondering why I was chosen to suffer in such a way.

There is currently no cure for RLS, so I knew that learning to live with it was my only option. I tried to find a support group along the way but was unsuccessful. The battle to live a better quality of life was much more difficult than I anticipated. After finally discovering the resources embedded in the RLS Foundation, I decided to start a support group in North Carolina.

The focus of my life has been to find a way to live a more comfortable life and help those who suffer with this condition during the process. Most days are hard work for me, but at the end of the day, the struggle is worth the challenge. I hope to share my strength with those who suffer from RLS.

Stay up to date with all upcoming RLS Foundation support group meetings on our website or Facebook page. All volunteer support group leaders and contacts are available via phone or email to provide support. Search by city or state to find one near you!

Interested in becoming a volunteer RLS Foundation support group leader? Visit our website to learn more about the role and how to apply!

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!

Two New Support Group Leaders in Michigan

The RLS Foundation is pleased to welcome Linda Tuomaala as the new support group leader in Oakland County, and Kathleen Nolan as the new support group leader in Ann Arbor. Thank you both, and welcome!

Linda Tuomaala (Oakland County, Michigan)

RLS has been a part of my life for over 30 years. While seeing a neurologist years ago, I mentioned the difficulty sleeping due to the strange sensations in my legs and their jerking at night. I learned that these symptoms had names: RLS and PLMD. I found there was little information about it and a lack of awareness by people in general. When in social situations, I would ask others if they experienced this. None had and many had never heard of it. There was definitely a need to expand awareness of what RLS and PLMD are and how they affect a person's life.

After retiring from 27 years of teaching, I found that I had more time to volunteer, but needed something that I felt a connection to. From the RLS Foundation Facebook page, I learned there were support groups, but none in Michigan. (There are now two there.) This was a perfect fit. My purpose was two-fold. One, holding support group meetings that would bring people together to share information. In the process I would learn from them, too. Secondly, by being involved with the RLS Foundation, I would learn about current research.

Progress in dealing with RLS and PLMD happens when both patient and doctor have available to them the most current information. As an RLS Foundation volunteer support group leader, I will do what I can to facilitate that process. Already from the few meetings that my group has held, I have learned how helpful it is to meet, share information and support one another.

Kathleen Nolan (Ann Arbor, Michigan)

I decided to become a support leader because there were no meetings in Michigan, and I felt it was important to have group support to discuss RLS symptoms and management. It is also a syndrome that is very misunderstood and many think it is not real. My hope is that with a group in southeast Michigan, both knowledge and management can be shared.

Stay up to date with all upcoming RLS Foundation support group meetings on our website or Facebook page. All volunteer support group leaders and contacts are available via phone or email to provide support. Search by city or state to find one near you!

Interested in becoming a volunteer RLS Foundation support group leader? Visit our website to learn more about the role and how to apply!

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!

Providing RLS Care in Southern Switzerland

Mauro Manconi, MD, PhD, a current member of the Foundation's Scientific and Medical Advisory Board, has devoted much of his career to sleep medicine. In 2016 he partnered with the RLS Foundation as director of the second European RLS Quality Care Center (QCC), the Sleep Center at the Neurocenter of Southern Switzerland.

"The fact that an international organization certified Sleep Center at the Neurocenter of Southern Switzerland is of great satisfaction to us," Manconi said. "It is an important recognition that comes at the end of a long period of clinical and research work by our team... This acknowledgment confirmed that we are on the right track and it further motivated us, but above all it explained to the general administration of our institute the importance of this disease and the need to face RLS with a competent and multidisciplinary team."

Manconi also teaches at the Master School of Medicine at Bern University, the Institute of Communication and Health at the Italian Swiss University of Lugano, as well as at the Professional University School of Italian Switzerland. His research focuses on sleep disorders, specifically sleep-related movement disorders like RLS and PLMS, and he currently serves on the Scientific Board of the European Restless Legs Syndrome Study Group. At the RLS Foundation, Manconi is an active member of the Medical Bulletin Committee.

"The RLS Foundation QCC in Lugano, Switzerland offers individuals with RLS living in Europe a centrally located clinic with access to experts who are specialists in the care and management of individuals with restless legs syndrome," RLS Foundation Executive Director Karla Dzienkowski, RN, BSN, said. "Finding a knowledgeable provider is an important first step leading to symptom control and improved quality of life."

At the Neurocenter of Southern Switzerland, RLS patients receive a complete diagnostic pathway that begins with clinical and laboratory assessments, using the most sophisticated neuroimaging and video-polysomnographic instrumental examinations when needed. This allows for the certified RLS healthcare providers to rule out secondary RLS or other diseases that enter differential diagnosis along with RLS. At the Sleep Center, each patient receives an individualized therapy, including the management of other possible internist, neurological or psychiatric comorbidity that are periodically discussed by a local multidisciplinary team.

"The Center is always updated on the latest treatment available, participating in clinical trials and research in order to offer a large spectrum of assistance to our patients," Manconi said.

You can find more information on the Sleep Center at the Neurocenter of Southern Switzerland below:

Sleep Center, Neurocenter of Southern Switzerland

Civic Hospital of Lugano

Via Tesserete 46

Lugano, Switzerland 6900

Phone: 0041 (0)91 811 6825

Certified Healthcare Providers:

• Mauro Manconi, MD, PhD (QCC Director)
• Sylvia Miano, MD, PhD
• Stephany Fulda, PhD
• Pietro-Luca Ratti, MD, PhD

Board Member and Longtime Friend of the Foundation

Jacci Bainbridge, PharmD, FCCP, a current member of the Foundation's Board of Directors, has a long history with the RLS Foundation. Beginning in 2007, Dr. Bainbridge served on the BOD for eight years. After a two year hiatus, she returned to the board in 2017.

"I have a vested interest in educating our patients, physicians and the public on RLS and neurologic medications," Dr. Bainbridge said. "I chose to serve on the RLS Foundation Board in order to assist in filling a knowledge gap in education and research relating to RLS awareness and medication usage."

Dr. Bainbridge serves as a clinical pharmacy specialist at the Anschultz Outpatient Pavilion's Neurology Clinic, an extension of the Neurology Residency Teaching Program at The University of Colorado Denver. She is also a professor in the Department of Neurology at the university's School of Medicine, and teaches at the Skaggs School of Pharmacy and Pharmaceutical Sciences, where she is a three-time Professor of the Year (2010-2012).

"Jacci is a committed educator and researcher in the RLS field," Executive Director Karla Dzienkowski said. "She brings her knowledge as a PharmD to the board and fully supports the Foundation’s education and awareness outreach, as well as providing valuable insight on research proposals under funding consideration at the board level."

Dr. Bainbridge manages patients with neurologic disease states such as epilepsy, Parkinson disease, multiple sclerosis, migraine and restless legs syndrome. She is currently involved in research projects funded by the Colorado Department of Public Health & Environment using marijuana. In her recent past she has had projects funded by the NIH, spanning subjects such as epilepsy, multiple sclerosis and neuroprotection trials in Parkinson disease.

Click here to read an article from the Winter 2015 edition of NightWalkers that Dr. Bainbridge co-authored with Mark Buchfuhrer, MD, FRCP(C), FCCP, FAASM, where they examine the relationship between medical marijuana and RLS.

Tennessee's RLS Quality Care Center

The RLS Foundation offers a network of certified RLS Quality Care Centers (QCCs) around the U.S. and Europe. These QCCs are renowned for their outstanding performance in the field, and are staffed by leading RLS specialists who provide expert care and specialized disease management.

Among these Centers is Vanderbilt University Medical Center, located in Nashville, Tennessee. Accredited by the American Academy of Sleep Medicine, the Vanderbilt Sleep Disorders Center has won a Five Star Excellence Award four years in a row for scoring in the top 10 percent of clinics in the U.S. for patient satisfaction. The Center offers specialized care for sleep apnea, restless legs syndrome, narcolepsy, insomnia and other general sleep problems. At the helm of this RLS Quality Care Center is Arthur S. Walters, MD, serving as QCC Director.

Throughout his career, Dr. Walters has focused his research on sleep-related movement disorders. Additionally, as the founder and first chair of the International Restless Legs Syndrome Study Group (IRLSSG), he helped establish the universal clinical criteria for the diagnosis of RLS.

He also played an integral role in the history of the Foundation, going back as far as 1992 when the Foundation received its nonprofit status. Dr. Walters was a key player in establishing and validating the first scale to be used for the measurement of RLS severity, a scale that is now the most widely used for measuring RLS severity in both academic and industry sponsored studies. He is currently serving as chair of the Foundation's Pediatrics Committee, and is also a member of the Opiate Committee.

“Dr. Walters served as the first Chair of the Medical Advisory Board," Executive Director Karla Dzienkowski said. "Under his leadership, he set the scope and role the MAB would serve as an Advisory Board to the Board of Directors. We are thankful to Dr. Walters for his continued work with the organization, as well as fostering the growth of other clinicians and researchers in the RLS field.”

Other certified healthcare providers at the Vanderbilt University Medical Center include:

• Kanika Bagai, MSCI, MD
• Jennifer Hensley, EdD, CNM, WHNP, LCCE
• Beth Ann Malow, MS, MD
• Althea Robinson-Shelton, MD
• Raghu Pishka Upender, MD

Vanderbilt’s location in Nashville makes it accessible to individuals in various regions of the U.S. that are seeking expert care in the treatment of RLS. The Vanderbilt Quality Care Center has one of the largest staffs of certified healthcare providers in our QCC network, and they treat both children and adults living with RLS. To make an appointment, call 1-615-936-0060.

To achieve certification, Centers undergo review by the RLS Foundation's Scientific and Medical Advisory Board (SMAB), and must demonstrate a high level of expertise and experience treating restless legs syndrome. To learn more about the qualifications and how to apply, click here.