Restless Legs Syndrome Foundation Blog

Why Your Voice Matters

Your advocacy efforts have been paying off! In October 2017, the RLS Foundation launched an advocacy initiative to inform federal policy makers about restless legs syndrome (RLS) with three main goals in mind: increasing funding for research, protecting appropriate access to opioid therapy, and expanding physician education and public awareness.

Many members of the RLS community have done their part in pursuing these goals by reaching out to their federal and local representatives via email, letter or phone – as well as joining the Foundation in Washington, DC, last May for RLS Advocacy Day on Capitol Hill. As a result, Congress continues to highlight RLS medical research at the National Institutes of Health (NIH) through report language in annual appropriations bills; and the Department of Defense continues to pursue important research on sleep disorders.

You may be wondering, “How does this affect me?” Educating legislators about the concerns of RLS patients puts necessary pressure on Congress to continue funding major research institutions, which in turn allocate resources to further research on RLS and sleep disorders in general – bringing scientists closer to finding better treatments and ultimately, a cure.

The proof is in the grant allocations that have been awarded to key researchers in the field, including members of the Foundation’s very own Scientific and Medical Advisory Board. Brian B. Koo, MD, who is the director of the Yale Center for Restless Legs Syndrome (an RLS Quality Care Center), recently received a grant from the Department of Defense for his work on RLS and hormones. Dr. Koo and his team at Yale University are investigating whether the levels of melanocortin hormones are increased in the blood and cerebral spinal fluid of people with RLS. If you are interested in participating, see details on www.rls.org.

Likewise, RLS Foundation advisory board member James Connor, PhD, at Penn State University received a grant from the National Institute of Neurological Disorders and Stroke to investigate iron deficiency and the RLS brain, in collaboration with David Rye, MD, PhD, and Lynn Marie Trotti, MD, MSc, both of Emory University. Dr. Trotti is the director of the Emory Sleep Center – an RLS Quality Care Center. Together, these researchers have developed models that will help to determine how cerebral spinal fluid from RLS patients affects the iron transport at the blood brain barrier.

Also funded by the NIH are RLS Foundation advisory board member Kathy Richards, PhD, RN, FAAN, of the University of Texas; and Christine Kovach, PhD, RN, FAAN, of the University of Wisconsin. They received a large grant from the National Institute on Aging to improve the treatment of nighttime agitation in people with Alzheimer’s disease. The researchers hypothesize that RLS may be a cause for nighttime agitation and sleep disturbance in these individuals.

These experts have made significant advances in the field of RLS research. Dr. Koo is one of the world’s foremost experts on the epidemiologic research that links periodic limb movements during sleep and cardiovascular disease. Dr. Connor is a leader in understanding the cellular and molecular mechanisms by which cells regulate iron. Dr. Rye was part of an international team that identified the first gene variant associated with RLS. And, Dr. Trotti is a two-time recipient of the American Academy of Sleep Medicine Foundation Strategic Research Award for her work on central disorders of hypersomnolence, RLS and sleep in neurodegenerative disease.

In addition to their work in research, these experts also work directly with the RLS Foundation to increase their impact on the RLS community. Drs. Connor, Koo and Trotti are all members of the RLSF Scientific and Medical Advisory Board. Dr. Koo and Dr. Trotti serve as the directors of the Yale Center for Restless Legs Syndrome and the Emory Sleep Center, respectively. Dr. Rye is a certified RLS provider at the Emory Sleep Center. Finally, Dr. Koo and Dr. Trotti play a significant role in educating the public, as the medical editor of NightWalkers and the author of the “In the News” column, respectively.

RLS Foundation Scientific and Medical Advisory Board member John W. Winkelman, MD, PhD, of Harvard University; and board member Jeffrey Durmer, MD, PhD, of Fusion Health; have attended numerous meetings with policy makers to advocate the needs of RLS patients.

Christopher Earley, MB, BCh, PhD, FRCPI, also adds a powerful voice to RLS advocacy in Washington. Dr. Earley is not only the chair of the RLS Foundation’s Scientific and Medical Advisory Board, but also the director of the John’s Hopkins Center for Restless Legs Syndrome, an RLS Quality Care Center. He has joined the RLS Foundation in Washington on multiple occasions to advocate for the needs of RLS patients, healthcare providers, and researchers. Dr. Earley is conducting an NIH-funded study to evaluate epigenetic changes in DNA from blood (lymphocytes) and from brain autopsy in individuals with and without RLS.

Here is Dr. Earley’s take on the recently funded research projects: “The truth is, restless legs syndrome is something that most people don’t know about, and definitely very few people understand. When it comes to competing for grant-based money whether through the National Institutes of Health, National Science Foundation, or Department of Defense, name recognition is important. The RLS Foundation’s presence in Washington, DC, has been very important in enhancing visibility of the name and the disease. This gives us a fighting chance for competitive grant money when measured up against heart disease, cancer, and neurological conditions like Alzheimer’s disease. Further work is needed. Each visit to Washington increases the possibility of giving RLS higher visibility on grant-supported initiatives.”

Compelled to Act

Two years ago, when the RLS Foundation announced the Advocacy Program, I knew this was something that I had to do. What follows are my advocacy actions over the past two years. However, I believe that everyone needs to step up and become involved in advocacy in some way. Advocacy does not necessarily mean that you need to make a trip to Washington, DC. You can become involved by writing letters to your congressional representatives, visiting their local office to tell your RLS experience to a staffer in person, or simply responding to calls to action from the Foundation where you respond to government requests for comment. Just providing your financial support to the Foundation’s programs is another way to participate in the Advocacy Program.

To get involved, check out the Foundation’s Advocacy web page www.rls.org/get-involved/advocacy. Please don’t let everyone else carry the load. You CAN make a difference, just like me!

Here is my advocacy story. My RLS requires the use of opioids for treatment, yet the political climate in the town where I live is such that almost none of the doctors in town are willing to prescribe them for any reason other than surgery. Everyone says that "someone should do something" and I knew that in this case, that "someone" had to be me.

As per the Foundation instructions on how to get involved, I contacted the Health and Medicine Counsel of Washington (HMCW), the Foundation’s policy advisors in Washington, DC. Almost immediately, I received a reply email with detailed instructions on how to contact the local offices of my Congressional representatives. I was instructed to talk about my life with RLS, the problems that it causes for me, and three different issues that the Foundation was asking Congress for help with. I was also provided a set of "leave behind" documents to give to the Congressional staffers I met with.

A Welcome Reception

At all three visits, I was warmly received by the staffers and all the meetings went very smoothly. I was also able to make personal connections with each person I spoke with. After talking to me, one of the staffers said that she now suspects that her daughter may have RLS, which she would discuss with her pediatrician at their next visit. A week after the meeting, I sent thank-you emails to each person I spoke with and all three replied to let me know that they had passed the "leave behind" information along to their staff in Washington. My Congressman's staffer even contacted me a few weeks after that to tell me about an RLS related development at the regional Veteran's Affairs office, which covers part of the Congressman's district.

And then last May, I was fortunate enough to be able to travel to Washington, DC to participate in the Foundation's “RLS Advocacy Day on the Hill.” This was a fascinating experience and a real-life civics lesson. We were divided up into teams by state, briefed about how the visits would proceed, and then each team visited a number of offices for the states represented on the team. I was fortunate that the office of my Congressman, Scott Tipton, was one of the offices that we visited. At each office, the constituent for that member of Congress would say something about the challenges of living with RLS and then the group would join in to cover the various issues of interest to the Foundation, just like I did during my local visits the previous summer.

The call went out again in July that it was time to once again visit with the local offices. Further, it was suggested that these visits should be timed to fall during the August Congressional holiday, when all of our representatives return home for local visits. We received an updated set of issues to discuss and new "leave behind" documents. When I called Congressman Tipton's office, his district director remembered me from the previous year, and we chatted a bit about RLS while he checked his calendar. I had a major stroke of luck as Congressman Tipton himself would be in town the following week and there was a one-hour-opening in his schedule. When I told the HMCW staff about this, I received a special request to ask Congressman Tipton to sponsor a Congressional Resolution recognizing RLS Awareness Day on September 23.

The following week, I was excited to be able to meet Congressman Tipton in person, to have a chance to talk with him directly about the issues that we face with RLS, and to specifically ask for his help to recognize RLS Awareness Day. The meeting went wonderfully. I found out that Congressman Tipton had several close friends with RLS, so he was somewhat aware of the challenges that we face. When I asked Congressman Tipton if he would sponsor the Congressional Resolution for us, he readily agreed.

In mid-September I received an email from HMCW asking for help. There was some sort of snag in the process of getting the RLS Awareness Day resolution processed through Congressman Tipton's Washington office. HMCW asked me to contact my local office to push from my end while they also worked to clear the problem in Washington. An email to the district director in my local office resulted in an almost immediate reply that yes, he remembered that Congressman Tipton had agreed to sponsor the resolution and that he would call Washington immediately. With some additional support from our HMCW team located in Washington, fifteen minutes later, the snag had been cleared. So, on Wednesday, September 18, Congressman Tipton read into the Congressional Record a resolution recognizing September 23 as RLS Awareness Day.

You probably will not be called upon to help obtain a Congressional Resolution recognizing RLS Awareness Day, but you just might be able to educate your three congressional representatives about RLS – and that just might be enough to help us get that critical final vote to pass a bill in Congress that benefits those of us with RLS.

Stephen Smith is a dedicated member and volunteer at the RLS Foundation. He is always eager to participate in any way possible to promote RLS awareness and education. Steve has served as a Discussion Board Moderator for over five years, answering questions and providing resources at all hours of the day and night online with other discussion board moderators. He gives many people hope and the knowledge that they are not alone by sharing his RLS story on video, seen on www.rls.org and on our YouTube channel. He is an avid runner and has retired from a demanding career in the high-tech industry and moved to Colorado with his wife, Deb, for better climate and a more relaxed lifestyle.