Restless Legs Syndrome Foundation Blog

September x, 2022

Why I Serve on the RLS Foundation Board

By Lew Phelps, former Chair, Chair Emeritus and current member of the RLS Foundation Board, 2018 Ekbom Award recipient.

I first heard about the Restless Legs Syndrome Foundation from a cousin, Margaret McCleery Fuhr. Her father and my mother were siblings. They both suffered from what the family called “the McCleery Twitch.” Cousin Margie had recently joined the RLS Foundation’s Board of Directors. She wondered if I was afflicted. Boy, was I ever! At the time I didn’t even know what to call it, but I knew that I was having trouble sleeping. “Lew,” she said, “welcome to the club. You have RLS.” Fast forward a few years. I’m at a business meeting and strike up a conversation with a guy named Bob Waterman. Bob was a hot commodity in the publishing world, having co-authored In Search of Excellence, which was at the top of the New York Times Best Seller List. We discovered that we both had RLS and Bob, chair of the Board of the Restless Legs Syndrome Foundation, recruited me to join. I agreed, joining the Board in 2002 and eventually serving as chair.

It's clear that my own severe case of RLS gave me a reason to work hard to grow the organization and the services it offers to its members. But there were other challenges I discovered once I was on the Board:

• During my career in public relations, I saw the importance of an organization’s branding. I was thrilled to be able to work with a designer to develop a new RLS Foundation logo. It was my intention to find a way to express hope for those with RLS. This new logo would portray “light at the end of the tunnel” – and that logo has endured.
• In 2013, I got a phone call from a long-time friend, Karla Dzienkowski. Karla’s tone was urgent, “Lew, I need your help! I’ve just agreed to become Executive Director of the RLS Foundation. Will you come back?” I was up to my neck in professional commitments, but Karla is persuasive, and I agreed to serve (eventually once again as board chair).
• As the nation began to pay attention to the devastation of opiate abuse, our members reported difficulties obtaining prescriptions for their low total-daily dose opioids. The Foundation funded a long-term study to demonstrate the efficacy and safety of the drugs. Simultaneously we crafted a program to demonstrate to legislators and regulators that opioids are a safe, effective part of treatment for refractory RLS when all other treatments are rendered ineffective.
• Working together, Karla and the board developed a highly successful direct mail campaign that not only provides support, but also connects us with our members and educates everyone who receives our mail. Member support now provides stability, permitting us to increase our activities.

I guess I could have simply declared victory and, indeed, I retired from the Board. But I recently agreed to rejoin the Board to help with new opportunities that have emerged. Unlike the first time I was persuaded to join the Board, where financial and organizational issues dominated, we now have several breakthrough possibilities that should excite us all. Let me describe a couple of projects that lie ahead.

• The Foundation recently completed its second Patient Odyssey Survey, looking at the experience of over 3,400 people with RLS and their partners. The raw data – and the heart-breaking stories that some contributed – were the first time that the impacts of RLS on patients and their families were systematically documented. But the survey results were far richer than we expected. I recruited my twin brother, Dr. Charles E. Phelps, a noted healthcare economist, to analyze our materials. Working on a pro bono basis, Chuck’s analysis demonstrated conclusively the devastating effects on quality of life that this disease imposes. He and ODYSSEY II co- authors are preparing journal articles that will appear in leading professional publications, the first step toward raising research funding levels.
• There’s a new project just at the early planning stages, based on the Foundation’s data and aided by Chuck’s deep knowledge of how medical advances move from research to treatment. There’s hope that a few simple questions – like those routinely asked about depression – can drive a more robust effort to find RLS sufferers and propel them into treatment without delay.

So, I remain as excited now as I was when I first joined the RLS Foundation Board 20 years ago. I am convinced that, with your help and support, we can find a way to defeat this disease that has caused me and you so many sleepless nights and pain. I know we can do it, and I hope you will join me on this thrilling adventure.

February 17, 2020

By Carla Rahn Phillips, Chair of the RLS Foundation Board of Directors

For those of us with RLS – and that includes me – it’s easy to think we already have enough challenges without taking on something outside of our personal concerns. Nonetheless, many of us still volunteer our time or money, or both, for causes we believe in.

Although I have struggled with RLS for more than 25 years, I only learned of the RLS Foundation a few years ago. After discovering the Foundation’s website, I became a member to take full advantage of the information that the Foundation provides. Apart from becoming a member, however, it never occurred to me to volunteer my time. That changed due to an unexpected chain of coincidences.

As you may recall, August of 2017 marked a spectacular total eclipse of the sun that was visible across a wide swath of the continental United States. In the run-up to that eclipse, two of my college classmates started organizing a class get-together in Wyoming in the middle of the “path of totality” of the eclipse. It was shaping up to be a major event for our class, with five days of lectures from experts in astronomy and related fields, and the chance to visit with old friends. We were slated to virtually take over a remote mountain resort in Wyoming on the edge of Grand Tetons National Park, far from a major town. My husband and I were excited about attending, but, with my RLS, I began to worry about the meals we would be served. It sounds trivial, but if those meals were to have lots of salt and sugar, I knew I would not be able to sleep at night, because those are two of my triggers for RLS.

I was reluctant to raise my private concerns about the menus, even though attendance, lodging and meals had to be prepaid. Then one of the organizers asked if any of us had any special dietary requests, so I responded that it would be very helpful to have the option of low-sodium food, because I suffered from restless legs syndrome. It turned out that one of the organizers, Lew Phelps, also has RLS, and had already planned for low-sodium meals! Moreover, Lew had been a stalwart member of the RLS Foundation for decades, and in 2017 he had already chaired its Board of Directors for several years. The eclipse event was a great success. Even better, I was able to sleep well thanks to the foresight of Lew and his brother Chuck.

Long before memories of the eclipse faded, Lew suggested that I volunteer for the board of the Foundation. Unlike corporate boards of directors, nonprofit boards almost always serve without pay, and the members of the RLS board pay their own transportation and hotel costs for the annual face-to-face meeting, as well as all their other expenses. In other words, it truly is a voluntary and financial commitment. Several members of the board are busy professionals in healthcare or other fields. Nonetheless, they volunteer their time to the Foundation because of their passion to educate patients and healthcare professionals about RLS, support scientific research into its causes and management, and ultimately find a cure. I had recently retired from the University of Minnesota after four decades as a professor of European history, and Lew persuaded me that it was time to give back. I joined the Board of Directors in 2017 as one of the “civilian” members of that body – that is, a non-healthcare professional. Since then, by attending meetings of the board and its committees – nearly all online or by phone – I have learned an incredible amount about RLS and about the important work of the Foundation. When individuals make a major donation to the Foundation, members of the board thank them personally. As a board member, I have enjoyed writing to let major donors know how much we appreciate their support.

Lew just stepped down as chair of the Board of Directors after a long and distinguished tenure. One of his final acts as chair was to persuade me to succeed him as chair. Although I do not plan to replicate his long tenure, I hope I can make a useful contribution to the Foundation’s work. It’s the least I can do to thank the Foundation for helping me cope with my RLS.

As members, we receive NightWalkers and have access to webinars and the full library of the Foundation’s publications. Thousands of nonmembers also benefit from free information that the Foundation provides, and it costs time and money to produce that information. The best thing that members can do is to persuade everyone they know with RLS to become members of the Foundation, which does so much for us all.

September 17, 2019

Dr. Ronald Anderson and Marcia Ball Join Board of Directors

The RLS Foundation is pleased to announce two new members of the Board of Directors. Both have been long time supporters and members of the Foundation and now will be donating their time and talent to help propel the Foundation into 2020.

Linda Secretan, Secretary and Chairman of the RLS Foundation Nomination Committee explains, “Last September at the RLS Patient Symposium hosted by the RLS Foundation in La Jolla, we had an opportunity to meet many faithful Foundation members. It was a pure pleasure for your board members to meet so many for whom our shared mission and vision resonates. Marcia Ball and Dr. Ron Anderson were two of those enthusiastic members who expressed interest in how they might carry forward the effort on behalf of all of us, our families, and friends who are suffering from this increasingly well-known disease. Each brings a singular perspective and unique talents to the effort; we are grateful to them for joining the team!”

Ronald E. Anderson, PhD

Ronald E. Anderson, PhD was born in Sikeston, Missouri in 1941, but grew up in Addis Ababa, Ethiopia from 1944-1953. He received his Bachelor’s Degree in psychology from La Sierra University and his PhD in sociology from Stanford University. He went on to become a professor of sociology at the University of Minnesota and continued to teach for nearly four decades. As an academic, his early work focused on social and institutional factors as they relate to the development of technology-based teaching. His interdisciplinary work in sociology, educational research, and computer science has earned him honors and awards for outstanding service from the American Sociological Association, the American Educational Research Association, and the Association for Computing Machinery.

Dr. Anderson is now an emeritus professor of sociology and is the founder of the Foundation for the Relief of Suffering. Since retiring, compassion and human suffering have been his primary interest. This led to the discovery of indicators of compassion and caring in society and the development of Good Societies Index. Anderson has authored numerous scholarly articles and books and continues with these pursuits. He hopes to contribute to the RLS Foundation by focusing on the suffering of those with RLS.

Anderson brings to the board his personal experience with RLS. Although he was diagnosed with RLS over 20 years ago, he suffered from augmentation and struggled to find a healthcare provider that met his needs. After contacting the RLS Foundation he was able to find a physician and receive the appropriate treatment for his RLS, which he states, “transformed my life by giving me freedom from pain and sleeplessness.” Anderson now wishes to give back to the RLS Foundation and the RLS community in return for the help that he received.

Marcia Ball

Marcia Ball was born and raised in Cleveland, Ohio. She received her Bachelor’s Degree in Elementary Education/Speech from Westminster College and her Master’s Degree in Early Childhood/Special Education from George Washington University. Ball spent her career as an elementary school teacher, taking on major projects such as redesigning and executing a New Resource Room at Walter Hays Elementary School in Palo Alto, California. Although teaching will always be her passion, she began volunteering after motherhood and has been a dedicated volunteer since—actively giving back to the Detroit community where she resides. In recognition for her work, she has been the recipient of several outstanding volunteer awards, including the Junior League of Detroit’s Adult Well Being Award, for her extraordinary service to the senior community.

Ball explains the impact of volunteering and what she calls the power of a cup of water: “Every person that walks into the front door of the hospital has something on their heart or mind, often a burden they cannot share. When offered a smile and a cold glass of water, I have offered them a very simple gesture which lets them know that someone cares about them. It can make the waiting in the ER seem tolerable, it can calm someone’s anxious spirit and it can soften the blow of hard news to another person. Yes, one cup of ice water is what I have to offer the RLS community. I can make a night seem shorter, calm one as they pace the floor because sleep won’t come, or stop the tears of one who is so frustrated with these legs that won’t stop. I can’t cure RLS, but I can offer a cold cup of water.”

After having RLS for over 30 years, and seeking care from a knowledgeable healthcare provider when her RLS was untreated for at least 10 years, Ball was particularly drawn to the Foundation’s mission to educate the medical community and the general population on RLS. She plans to use the lessons that she has learned from teaching and volunteering to serve the RLS community.