Rls Foundation Launches New Quality Of Life Study

Findings from the initial survey were published in the journal Sleep Medicine and disseminated broadly.

The current survey will gather updated and expanded data, and is particularly focused on the RLS patient experience with regard to treatments and medical care. People with RLS and their spouses/partners are encouraged to visit www.rls.org/odyssey to participate from Sept. 23 to Oct. 23.

Specifically, the study aims to:

• Understand the experiences of RLS patients with medical treatment and symptom management
• Provide data to researchers on the long-term burden of disease, including impact on spouses and partners
• Promote awareness that RLS is a serious neurological disorder
• Provide resources for RLS patients to facilitate decision-making with their healthcare providers

“RLS is a serious disease that can have a devastating impact on quality of life,” says Karla Dzienkowski, executive director of the RLS Foundation. “We have come a long way to advance treatments and research, but today's treatments are limited, and there is no cure. RLS patients still face significant daily challenges in managing the disease. This study will provide data to accelerate and focus our efforts to address these challenges and improve quality of life for RLS patients and their families.”

An estimated 12 million men, women and children in the US have RLS, and one in 33 adults (3%) needs daily medical treatment to manage symptoms. People with RLS experience an agitating and overwhelming urge to move their legs that can only be relieved by moving. RLS is at its strongest at night and severely disrupts sleep, robbing people of the ability to work and live normally while simultaneously raising the risk for hypertension, diabetes, heart disease and Alzheimer’s disease.

Results will be shared with the RLS community and the public in 2021, prepared for publication in the medical literature and presented at scientific meetings. Findings will also be shared with health policymakers in the RLS Foundation's legislative jadwal and advocacy materials.

The RLS Patient Odyssey Survey II was designed by members of the RLS Foundation’s Scientific and Medical Advisory Board, Board of Directors, and staff. The survey is made possible by an educational grant from Arbor Pharmaceuticals.

Board Spotlight: Lew Phelps

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.