Restless Legs Syndrome Foundation Blog

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.”

Join us in Washington DC

On behalf of the RLS Foundation, I invite you to join us for the 2019 RLS Advocacy Day on Capitol Hill on Friday, May 3, in Washington, DC.

Policy makers are currently debating which issues they will take on throughout this session of Congress. It is essential that RLS patients make themselves heard during these deliberations.

Our RLS Advocacy Day on Capitol Hill will give RLS patients and caregivers the opportunity to advocate on behalf of our community in the halls of Congress. Throughout the day, you will meet with staff at the offices of your US senators and members of the House of Representatives to discuss the importance of advancing medical research, increasing access to treatments, and promoting education and awareness for RLS. These issues are vital to improving quality of life for patients and ultimately finding a cure for RLS.

As you know, most people aren’t aware of the daily challenges that come with an RLS diagnosis, and nobody communicates the needs of the community better than RLS patients themselves.

Advocacy is as easy as sitting down and telling your story. Many of you have already done this in writing, or in person with staff in your local congressional offices. Members of Congress and their staff want to see and hear directly from you. It’s their job to represent your concerns in the policy-making process in Washington.

Now, more than ever, your voice in policy making is needed. At each legislative meeting, we will discuss the importance of increased federal support for RLS medical research, education and awareness, and access to treatments.

We know that travel is often challenging for those with RLS. If your RLS prevents your attendance, we appreciate your help in spreading the word and supporting our important advocacy work in any way possible. Thank you for your participation in RLS advocacy efforts. We look forward to seeing you in Washington on May 3!

Please stay tuned for more information about this important event. If you have any questions, please contact me at herzog@hmcw.org.

The RLS Foundation has awarded a $22,100 grant to John Winkelman, MD, PhD, of Harvard Medical School and Massachusetts General Hospital to continue his study on the long-term use of opioids to treat RLS. Dr. Winkelman received a grant from the Foundation in 2017 to support the first stage of this research.

“The funding extension will help the researchers obtain valuable information from long-term follow-up of patients,” says Karla Dzienkowski, executive director of the Foundation. “This is the first study in which patients with RLS who use opioids are monitored over time to evaluate the effectiveness and tolerability of this treatment long-term, and by far the largest observational study of such patients.”

Opioids are an established, highly effective treatment option for people with severe RLS when other therapies have failed. However, concrete data is lacking on long-term use of these medications for RLS. By gathering data over time, Dr. Winkelman’s team will evaluate the effectiveness, tolerability and safety of opioids for treating RLS, and aim to further understand how factors such as behavior and mood may influence opioid effectiveness and safety.

This much-needed data will help physicians and patients make more informed treatment decisions, especially in the face of increasingly strict opioid regulations limiting access at the state and federal levels.

Over the past year, Dr. Winkelman’s team has created a national registry of patients who take opioid medications for RLS. As of December, the researchers had enrolled 360 participants – far surpassing their goal of 200. Participants complete a phone interview and an online survey covering a range of topics related to their RLS symptoms, treatment, medical history, habits and behaviors. They then complete follow-up surveys every six months. All stored information is confidential and anonymous.

The study will remain open to new participants until approximately late June. Enrollment is limited to individuals who have a diagnosis of RLS, are taking an opioid medication to treat their RLS symptoms, and have previously taken or are currently taking a dopamine agonist for RLS treatment. For information about participating, see rls.org.

Please note that no consultation, advice about clinical care, or medication is provided through this study.