Restless Legs Syndrome Foundation Blog

More on my "Popcorn Proposition"

One of the big dreams of the Foundation is to act as a catalyst in finding better treatments for the disease. Most of us hope for the magic pill, potion, or even surgery that will stop this horrible feeling that occurs daily for me, and I suspect almost daily for many of you.

Way back in the early 90s, when I started talking with doctors about RLS, the sleep docs I was talking to put me on Sinemet. It did stop my restless legs but changed my personality so much, and in such negative ways, that I was terrified. And I didn’t know how to get off of it. Finally, and with the help of a brilliant psychiatrist and some people at Johns Hopkins, I was able to put Sinemet in my past.

There followed a parade of other pills: Permax, Mirapex, Requip ... all were helpful – at first.

All eventually generated the phenomenon known as augmentation: The drug worked beautifully for a while; then, after a period that might be as long as a couple of years, I started needing a higher and higher dose. The drug itself had started making my RLS worse instead of better. The silver bullet had turned to lead.

So I’ve hoped, as have many of you, that we could find great nondrug therapies for RLS. I’ve dreamed that all of us in the RLS community could somehow collect, and even rank, our nondrug therapies for RLS: What practices make life manageable when drugs aren’t working that well? What can we do when we want to both treat RLS symptoms and limit our drug intake?

Just because it’s fun, I’ll start my own list by revisiting the “popcorn proposition.” (Those of you who have been around a while may remember when I first wrote about this in NightWalkers in 2001.)

I love going to the movies. Trouble is that even if it’s Mission Impossible, I get jumpy and have to stand in the back of the theater, or in the aisle, to get through the movie.

However, if I go to my seat (an aisle seat helps) armed with a bag of popcorn, I can make it through the show. The secret is eating the popcorn s-l-o-w-l-y, one ... kernel ... at ... a ... time. Eating that way, I can get through a whole movie on one small bag of popcorn. Sometimes I go wild and get a medium bag.

What characteristics does my popcorn proposition have in common with other nondrug treatments for RLS? In my mind there are two. First is that I’m doing something physical and mind engaging – in this case, constantly moving my hands. Second, is the knowledge that I can escape my seat if I want to, since I’m sitting in an aisle seat. Knowing that I can easily stand seems to reduce my need to stand.

Another nondrug approach: My wife and I love the symphony, musical comedies, ballet, and – gulp – even the opera. Popcorn isn’t going to work for these occasions. But part of my popcorn approach will.

For example, on our 50th anniversary we watched Don Giovanni in the theater in Prague where this opera was first performed. Several scenes into it I was as jumpy as a kangaroo. My handful of M&M’s wasn’t helping. But I noticed that many of the side boxes were empty, and during a scene change, I commandeered an almost empty box. (A few ushers had noticed the same empty boxes and were sitting in them too.) Relief. I could stand if I needed. Pace if I needed. And because I could, lost the imperative to stand or pace. (Well, I paced a little bit.)

These days we go to the symphony about once every other month. I seldom get jumpy there, and I am convinced that it’s because we are lucky enough to be in a box where I can escape I need to.

All of this makes it sound like RLS is purely mental – not real. Something the brain cooks up. That’s nonsense, as any of us with RLS knows. However, psychological factors can alleviate the symptoms or make them worse.

Take another example: I love to draw and paint. I can sit still for hours if I’m painting, though I cannot start a drawing or painting if I’m in the middle of an RLS attack. To me, the popcorn parallel is obvious. When I’m painting or drawing or eating popcorn, my hands are occupied, and so is the movement part of my brain. Whether I’m painting, or watching a thriller, my mind is occupied.

I’m good at knitting and tying fishing flies. My grandparents taught me. And again, the same themes: Hands occupied. Brain engaged. RLS in check.

One summer I tied 1,000 dry flies for sale at a Colorado dude ranch. You can question my brain on accepting that job, but all I could see was 1,000 times 25 cents. My dad, an ardent fisherman, loved that I could tie salable dry flies. He hated that I could knit.

Other nondrug palliatives for RLS for me involve simply wearing myself out. One of my favorites is hopping on an exercise bike in front of a TV. I use this with great positive effect when I’m jumpy before bedtime and need to settle to get to sleep. I ride for about half an hour, watching both the TV and a small screen on the bike that shows me riding through hill and glen, and even a ski area in the Alps. When the road gets steep, the peddling gets tough. When the road dips, my gadget lets me coast.

I know, I know. You’re not supposed to be looking at screens before bedtime. But the leg relief from my bike is so great compared to the restless legs symptoms in the evening, that sleep seems to come easily.

Hot baths – the hotter the better – are a standby treatment that many of us have used for years. For some reason hot baths are helping me less now, at 81, than when I was younger. The bike is better for me, but a hot bath is still welcome therapy.

A cold bath works also, though you have to be a little nuts to try it if a hot bath is available. I would not have believed this one until my family and I were rafting through the Grand Canyon. I was having great trouble getting to sleep; I was constrained in a tent and tight sleeping bag and feeling jumpy.

So I took a plunge in a quiet, 55-degree pool near our camp site. Darned if I didn’t feel much better. Hot, cold ... it must have something to do with shocking one’s nervous system.

Massage works well for me. The issue is that I can seldom schedule a massage when I need it most. Early afternoon? No problem scheduling. But 9 at night, when I really need a massage, I can seldom find a skilled masseuse available.

Popcorn, painting, knitting, hot baths, cold baths, exercise bike, tying flies – it’s quite a long list of things one can do to mitigate the symptoms of RLS. But I do want to emphasize one crucial point: These activities only help mitigate; they are not the cure. They help, but I would be terrified to face the rest of my restless life without drugs like gabapentin, Horizant and methadone, or a patch that delivers tiny amounts of rotigotine.

My strong belief is that each of us needs a catalog of drug and nondrug approaches for less night walking and better sleeping. Much as I like popcorn, no one bag is going to get me through that movie if I’ve forgotten to take the kind of opioid that works well for me. And no single approach is going to help me much if I don’t have access to my paints and, well ... yes, my bag of popcorn.

Bob Waterman has dedicated many years of service to the RLS Foundation. He led the establishment of the RLS Foundation's Research Grant Program in 1997 and currently serves as chair emeritus on the Board of Directors. Waterman is a non-fiction author and expert on business management practices who worked professionally as a physics researcher and economics professor before a 21-year career at the management consulting firm McKinsey and Company. He has authored several books, including the best-seller In Search of Excellence, which he co-authored with Tom Peters. Waterman has served on the board of directors of organizations such as the U.S. Ski Team, the San Francisco Symphony, the National Institute of Neurologic Disorders & Stroke, the Scleroderma Research Foundation, Mindsteps, ASK Computer, McKesson, Boise Cascade, and Armor All. He helped found and direct AES Corporation, a major international power producer. Waterman is also a watercolor artist and teaches painting.

Study Funded by RLS Foundation Reveals Results

Scientists are one step closer to developing a working animal model of RLS. In a study funded by the RLS Foundation, Yuan-Yang Lai, PhD, and her team at the University of California – Los Angeles (UCLA), researchers manipulated the diet of rats to make them iron deficient, and the animals demonstrated symptoms of RLS. These symptoms improved when the rats were given the drug pramipexole, and when they received more iron in their diets – two therapies known to improve RLS in humans.

“Dopamine drugs are one of two first-line treatments for RLS; however, they can lead to adverse effects, such as augmentation, after use,” says Dr. Lai. “Using our animal model, we should be able to test alternative drugs that are developed for the potential treatment of RLS that is caused by iron-deficiency anemia.”

The model may also enable researchers to identify the specific brain regions, circuits and chemicals involved in RLS and periodic limb movements disorder (PLMD). The study, “Motor Hyperactivity of the Iron-Deficient Rat – An Animal Model of Restless Legs Syndrome,” was published August 2017 in the journal Movement Disorders.

Studies have shown that RLS is common in people with iron-deficiency anemia, affecting up to 32 percent of people with this condition. The researchers fed rats an iron deficient diet to create anemia, then recorded their motor activity, or movement, through implanted electrodes – before and after treatment with pramipexole. They also monitored the animals after feeding them a normal diet to restore their iron stores, representing the process of iron therapy in humans.

The researchers found that the iron-deficient animals had symptoms similar to those seen in RLS patients, including motor hyperactivity in quiet wake and in sleep, frequent awakening from sleep, and daytime sleepiness. These symptoms were relieved when the rats received pramipexole, as well as when they received a normal diet containing iron.

These findings build on those of a previous RLS Foundation-funded study in which Dr. Lai found that iron-deficient rats given thioperamide, an H3 receptor antagonist, showed reduced period limb movements (PLMs). As a next step, Dr. Lai’s team is currently using the animal model to study why pramipexole treatment causes augmentation, and which areas and chemicals of the brain are involved in RLS.

Contact the Department of Health and Human Services and ask them to maintain access to low total daily doses of opioid therapies for RLS patients

As the nation moves to address the nationwide opioid crisis, many people with severe RLS are finding it difficult to access opioid medications to treat their symptoms. Your help is needed by March 25 to ensure this vital treatment option continues to be available to RLS patients.

Decision-makers at the US Department of Health and Human Services (HHS) are requesting comments from patients who use opioid therapies to manage their chronic conditions. Agency officials want to hear from RLS patients on how they manage their condition, and barriers that are affecting their access to treatment.

Background

On Dec. 18, 2018, the Pain Management Best Practices Inter-Agency Task Force issued a draft report on “Pain Management Best Practices: Updates, Gaps, Inconsistencies, and Recommendations.” This Task Force was established to provide guidance on policy for the use of opioid therapies to treat pain and other chronic conditions. HHS is overseeing this effort with the Department of Veterans Affairs and the Department of Defense.

RLS Foundation leaders met with the chair of the Task Force, Dr. Vanila Singh, earlier in 2018. Dr. Singh is the chief medical officer at the HHS Office of the Assistant Secretary for Health and has been overseeing a major portion of the federal government’s response to the opioid abuse crisis. She confirmed that RLS patients will need to comment on the Task Force’s draft report, so that the use of low total daily doses of opioids to treat severe RLS is incorporated when the recommendations are finalized later this year.

RLS is not a chronic pain condition; its underlying mechanisms and neuropathology are very different. It is vital for the RLS community to take part in this effort, however, because the perspectives shared will inform the Task Force’s guidance on regulations that will affect RLS patients who take low total daily doses of opioid medications to manage their condition.

HHS is requesting written feedback from the public on the draft report. The public will have 90 days to comment. Once the comment period ends, the Task Force will consider comments received and compile a Final Report with its proposed updates and recommendations.

Please submit your comments before March 25, 2019. RLS patients and caregivers must make their voices heard at this critical stage in the policy making process!

Take action: Submit your comments

Step #1: Go to the HHS online portal for submitting electronic comments and click on “Comment Now” at the right of the page.

Step #2: Tell the Task Force about RLS, how you manage your symptoms, and what kind of barriers have affected your access to treatment.

You can use the suggested discussion topics below to inform your comments. Feel free to answer the questions directly or simply review them to help guide your response:

• How long have you had RLS, and what were the steps you took to get diagnosed?
• How would you describe your RLS symptoms? (Characteristics could include location, intensity, duration, constancy or intermittency, triggers etc.)
• Are there specific activities that are important to you but that you cannot do at all or as fully as you would like because of your RLS? (Examples of activities may include work or school activities, sleeping through the night, daily hygiene, participation in sports or social activities, intimacy with a spouse or partner, etc.)
• How has your RLS changed over time? (Considerations include augmentation and the severity and frequency of symptoms.)
• What are you currently doing to help treat your RLS? (Examples may include prescription medicines, over-the-counter products, and non-drug therapies.)
• How has your treatment regimen changed over time, and why? (Examples may include change in your condition, change in dose, or treatment side effects.)
• How well does your current treatment regimen manage your RLS?
• What challenges or barriers to accessing or using medical treatments, including low total daily doses of opioids, have you or do you encounter or are you concerned about?

If you have any questions about submitting comments, please contact Peter Herzog at herzog@hmcw.org or (202) 544-7499.

Electronic comments must be submitted on or before March 25, 2019.

U.S. Department of Health and Human Services, Office of the Assistant Secretary for Health
200 Independence Avenue SW, Room 736E
Attn: Alicia Richmond Scott, Pain Management Task Force Designated Federal Officer
Washington, DC 20201

Step #3:If you wish to let us know that you completed Step #1 and #2 click here, your information will remain confidential. Thank you for participating in this important Action Alert!

Please note that providing your name is optional, and comments may be publicly viewed on regulations.gov. Any personally identifiable information you include in the comment form or an attachment will be provided to the department or agency, and may be publicly disclosed in a docket or on the Internet.

Other Ways to Submit Your Comments

Email written comments to: paintaskforce@hhs.gov

Mail written comments to:

U.S. Department of Health and Human Services, Office of the Assistant Secretary for Health
200 Independence Avenue SW, Room 736E
Attn: Alicia Richmond Scott, Pain Management Task Force Designated Federal Officer
Washington, DC 20201

More information

• Learn more about RLS advocacy and how to take action.
• Learn how to participate in the National Opioid RLS Registry.
• Make a financial gift in support of the RLS Foundation Advocacy Initiative.

New research has found that nerve activity outside the central nervous system may play a role in restless legs syndrome (RLS) symptoms.

In a study published in the Journal of Physiology, scientists report that nerve cells supplying muscles in the legs behave differently in people who have RLS.

Until now, RLS research and treatment has focused largely on processes deep within the brain. First-line RLS treatments target the brain's dopamine and glutamate systems, and brain iron deficiency is also known to be a factor in RLS.

In the new study, the researchers applied electrical stimulus to motor and sensory axons (or nerve fibers) of the median nerve, which is one of the major nerves along the arm. Study participants who had RLS showed higher activity in the motor axons but not the sensory axons, compared to participants who did not have RLS. In their paper, the researchers stated, “Taken together, our results suggest an increase in the excitability of motor units in RLS that could enhance the likelihood of leg movements.”

While the study was small, involving 33 RLS patients and 38 healthy controls, its findings open new avenues for exploration – including medications that could be developed to potentially treat RLS by targeting the nervous system outside the brain and spinal cord.

The research was conducted by the University of Gottingen in German, in collaboration with the University of Sydney in Australia, and Vanderbilt University in the US. RLS Foundation Scientific and Medical Advisory Board member Art Walters is a co-author of the study.

RLS Foundation Returns to Washington

In November, an RLS Foundation delegation again joined the Health and Medical Counsel of Washington (HMCW) in Washington, DC, to visit the offices of legislators and federal agencies involved in health care policy.

The meetings took place at a critical juncture in the midst of the nationwide opioid crisis. The government is moving to implement H.R. 6, the SUPPORT for Patients and Communities Act. This law, passed in October, calls for tactics to promote treatment and recovery from opioid addiction, and to improve prevention.

Many people with severe RLS find themselves caught in the crossfire. Even though there is no federal legislation or policy that prohibits prescribing opioids for RLS, the increased scrutiny of prescribing practices has physicians increasingly reluctant to use them; some have stopped prescribing opioids altogether.

"The Foundation's opioid advocacy initiative has already made significant progress, but the issue is far from resolved,” says Lew Phelps, chair of the RLS Foundation Board of Directors. “We were successful in ensuring that Congress didn't include anything in the recent opioid legislation that would have harmed the ability of RLS patients to obtain needed and appropriate treatment. However, the implementation of this legislation still presents potential challenges. We have to stay engaged to help ensure that physicians continue to be allowed to prescribe opioids for RLS."

In the DC meetings, a Foundation team led by Executive Director Karla Dzienkowski emphasized that opioids are a legitimate and critical treatment for severe RLS. About 1 in 33 Americans – 3 percent of the US population – has RLS that is severe enough to need daily medical treatment. When all other treatments have failed, opioids at low total daily doses are highly effective at alleviating RLS symptoms, and clinical guidelines are available for healthcare providers to use them appropriately.

“It’s important to spread the word that there are medically appropriate uses of opioids taken in low total daily doses,” says John Winkelman, MD, PhD, director of the RLS Quality Care Center at Massachusetts General Hospital. “We need to help doctors with safe prescribing – not overprescribing, but more effective and safe prescribing.” With support from the RLS Foundation, Dr. Winkelman is conducting a study to better understand the long-term safety of opioids in RLS.

Dr. Winkelman and Jeffrey Durmer, MD, PhD, of Fusion Health, joined the delegation on behalf of the Foundation’s Scientific and Medical Advisory Board. Sandra Katanick represented the RLS Foundation Board of Directors, and also the RLS patient community.

In the meetings the Foundation also stressed the importance of federal funding for research for the National Institutes of Health and the Department of Defense, both of which have growing portfolios in sleep disorders research.

Agency meetings: Making the RLS patient voice heard

The Foundation team met with the US Department of Health and Human Services (HHS) Pain Management Inter-Agency Task Force, led by Vanila Singh, MD.

The new opioid legislation requires HHS to study the impact of federal and state laws and regulations that limit opioid prescribing and submit a report to Congress. The Pain Management Inter-Agency Task Force is specifically charged with finding any gaps or inconsistencies in existing clinical best practices for managing acute and chronic pain.

It is critical for this report to acknowledge that opioids are used differently to treat RLS than to treat chronic pain, so that RLS patients continue to have appropriate access to opioid medications. Dr. Singh and her colleagues showed a strong understanding of RLS and the need for this accommodation, says Dzienkowski. “They were very receptive to the needs of the RLS community.”

The HHS Task Force will soon publish a draft of its recommendations, and the public will have the opportunity to comment over a 90-day period. The Foundation will notify the RLS community when this comment period begins with a call to action through its eFriends monthly newsletter and other channels. (Sign up to receive eFriends.)

The Foundation also met with the Centers for Disease Control and Prevention (CDC), which has issued a guidelines for prescribing opioids for chronic pain; and with the Substance Abuse and Mental Health Services Administration (SAMHSA), whose representatives sit on advisory groups to health care policy committees and working groups throughout the federal government. These meetings were a strong first step in building relationships within the two agencies. In follow-up, the Foundation will meet again with the CDC in December.

Congressional visits: ‘We now have RLS champions in Congress’

The RLS Foundation met with staff in the offices of Sen. Lamar Alexander (R-TN), Sen. Elizabeth Warren (D-MA), Sen. Bill Nelson (D-FL), Sen. Kamala Harris (D-CA), Sen. John Cornyn (R-TX), Sen. Johnny Isakson (R-GA), Rep. Rosa DeLauro (D-CT), Rep. Frederica Wilson (D-FL), Rep. John Yarmouth (D-KY) and Rep. John Lewis (D-GA).

Many of the Congressional staff members said that they are hearing from their constituent communities about barriers to treatment or providers unwilling to prescribe opioids in light of the new law.

Katanick observes, “I think we made a very compelling argument for the safe prescribing of opioids for conditions other than chronic pain, and the legislators’ duty to be certain that any rulemaking is not so restrictive that it actually harms patients.”

“We now have RLS champions in Congress,” says Dzienkowski. “In this round of meetings in Washington, we’ve seen a definite increase in awareness and support for the RLS community.”

“I want to thank everyone who has made donations to the Foundation’s advocacy initiative, responded to our calls to action, or met with their elected officials. At the Foundation, we are hearing from many people with severe RLS who are having trouble accessing their opioid medications. With your help, we are making a difference – for the RLS community today and for generations to come.”

The meetings were coordinated by HMCW, a government relations organization with nonprofit and health care industry expertise that is partnering with the RLS Foundation to guide its advocacy efforts. Also attending were Kris Schanilec of the RLS Foundation; and Dale Dirks, Dane Christensen, and Peter Herzog of HMCW.

To make a financial gift in support of the RLS Foundation Advocacy Initiative, visit www.rls.org.

More information

• Learn more about RLS advocacy and how to take action.
• Learn how to participate in the National Opioid RLS Registry.
• Read about the Foundation’s advocacy trips to Washington in February and June 2018.
• Watch for a complete update on RLS advocacy in the next issue of NightWalkers magazine, coming in February.

How Guided Meditation Has Changed My Life

Erika is a Support Group Leader who held her first meeting this year. After finally discovering the resources embedded in the RLS Foundation, she decided to start the first 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."

It’s been nearly four years since I began to suffer from debilitating pain in my legs. During my pursuit to identify the cause, I saw many providers who prescribed numerous medications that ended in failed attempts to control my pain. My fate changed when I was referred to a pain management specialist who would later confirm the diagnosis of restless legs syndrome (RLS). I learned that my RLS was severe in nature and would require monumental efforts to control. I was fortunate enough to have found a provider who would go to great lengths to help control my pain through a multifaceted approach.

RLS affected every part of my life. The disease led me down a path of lost sleep, which led to more pain, worsening frustration, and increased stress and anxiety. All of this eventually invaded the way in which I functioned as a wife, mother and individual. Under the close supervision of my doctor, I began to change my medication regimen and received much-needed medical interventions, which made my pain more tolerable. I began to work persistently to walk through my pain at night and participated in physical and mental health therapy to learn how to manage the disease. Although my RLS symptoms improved, the stress, anxiety and fatigue continued to exacerbate my symptoms and cause havoc on my sleep. On top of RLS, I had periodic limb movements in sleep (PLMS), which worsened my fatigue and reduced my ability to function well. I felt helpless and frustrated and couldn’t control the effects of stress on my symptoms.

I realized I needed to make a change. I began to draw, write, read and follow a regimented bedtime routine. I knew medication was a necessary component for controlling my disease, but my doctor continued to support me on gaining additional tools, instead of solely relying on medications. I soon learned that one of the missing pieces was to manage my stress. This endeavor would prove to be far more challenging than I’d ever imagined, until the day I discovered meditation music.

Meditation music made me feel as if I had company on those lonely nights. It was easy to access online at any time. As the sun set each day and my symptoms worsened, I found comfort in meditation music. I’d listen every night in order to fall asleep and stay asleep. Meditation music took the darkness out of what felt like an empty room. After some time, my sleep began to improve, but not as much as I would have liked. The sleep deprivation continued to take a toll on my body. Stress was still difficult to manage, anxiety continued to build, and the cycle of pain continued.

One day, I decided to search online for guided meditation sessions that focused on reducing stress and anxiety. I found a few narrators who were easy to tune into, and I found great comfort in their voices. They were calming in nature and took the feeling of isolation and fear out of my pain. I began to listen to guided meditation each night. Eventually I’d do the same every morning before starting my day. These practices became part of my daily ritual.

After several months of practicing guided mediation daily, I finally began to see results of my hard work and persistence. Eventually I also learned how to reduce my stress during the day by focusing on my breathing and creating visual images that improve stress management, such as packaging my worried feelings in a box and sending them away. Repeating mantras that I’d learned was also a way to reduce the anticipation of pending stress. Slowly, I learned that it felt better to feel calm instead of anxious and uptight. All of these practices began to impact the quality of my sleep and have a positive effect on my mood during the day. Sleeping well gave me energy and made me happier.

Guided meditation has helped me gain control of my RLS. It has given me the opportunity to sit in the driver’s seat. As long as we continue to initiate the same practices and behaviors, we will continue to be caught up in the cycle of pain, lost sleep, stress and anxiety. RLS can require a great deal of effort to control, but when we make positive changes, as difficult as they may be to initiate, we can generally expect positive outcomes. Guided meditation changed my life, and I hope you will give it an opportunity to change your life as well.

Erika says: “I survive the struggles of RLS with the support of my lovely husband and four daughters. They know how to make my darker days feel brighter. I try very hard to enjoy the good days with them, because I never know what tomorrow may bring. People who suffer with this disease tend to feel as if those good days are rationed. On those difficult days, I know that there will be a better one on the way very soon. I often find great comfort in a quote by Tom Hanks from the movie Castaway: ‘So now I know what I have to do. I have to keep breathing. And tomorrow the sun will rise, and who knows what the tide will bring in.’ I do try my best to maintain hope for brighter days ahead. Guided meditation has helped me enjoy those good days and reduce the interference of those tougher ones.”

Interested in making a difference and joining the RLS Foundation volunteer team? Visit our website to learn more about how to apply!

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!

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