March 21, 2024

Meet the RLS Foundation's Newest Team Member!

By Adrianna Colucci, RLS Foundation Communications Coordinator

Anjana Ganesh is a senior at the University of Texas at Austin (UT). She recently joined the RLS Foundation as an intern for the remainder of her senior year. In her free time, she enjoys reading, dancing and taking walks around Austin. The RLS Foundation is excited to have her join the team!

Q. What motivated you to pursue this internship opportunity?

A. I am part of UT’s Bridging Disciplines Program, where we are exposed to interdisciplinary classes. My certificate is called Patients, Practitioners & Cultures of Care. As part of the certificate, we are required to complete an internship, and I was really interested in learning more about the nonprofit side of healthcare. I discovered the Restless Legs Syndrome Foundation in an old blog post by my program. Upon delving into its mission and objectives, I found it to be an ideal fit for me. Not only did it align with my background in neuroscience, but it also presented me with an opportunity to explore a new dimension of healthcare.

Q. What has been the most exciting part of working with a new team?

A. It has been so exciting to work at the RLS Foundation! Each person I interact with has a unique skill set, ideas and perspectives, and everyone is so willing to let me learn. I’ve found that this diversity sparks stimulating discussions, leading to fresh approaches and innovative solutions to challenges. Everyone is so supportive and kind, which creates an incredibly compassionate atmosphere where I feel comfortable sharing ideas and asking questions.

Q. You recently wrote articles for the upcoming Spring 2024 edition of NightWalkers, the Foundation’s quarterly magazine. How has writing for the magazine magnified your understanding of the adversities the RLS community faces?

A. It has been such an incredible learning opportunity to write for NightWalkers. My focus has been exploring the intricate relationship between iron and RLS, a topic that has led me to delve deep into scientific literature and conduct insightful interviews, particularly with experts like James Connor, PhD, MS. Through these interviews and research for my articles, I’ve gained a comprehensive understanding of the scientific underpinnings of RLS, particularly regarding its connection to iron deficiency. By synthesizing information from various studies and expert opinions, I’ve uncovered the complexities of how iron levels impact RLS symptoms and the potential mechanisms at play. In my research, I discovered how hard it is to find easily accessible, accurate and concise information outside of the Foundation materials. Even after finding the materials, some studies are exceedingly complex, so it requires a lot of scientific background to understand what is happening.

Interviewing Dr. Connor has provided invaluable insights into the latest research findings and treatment approaches related to iron deficiency and RLS. This has broadened my understanding of the subject matter and equipped me with the knowledge to effectively communicate these concepts to NightWalkers readers.

Q. What have you learned about RLS and why do you feel it is important to increase awareness of the disease?

A. I’ve noticed how RLS is often misunderstood or misdiagnosed, leading to delays in receiving appropriate treatment. Many individuals with RLS may suffer silently, unaware that their symptoms are indicative of a medical condition that can be managed with proper intervention. Oftentimes, physicians aren’t familiar with RLS, and that’s why resources like the Foundation’s network of RLS Quality Care Centers are so important. I think that raising awareness of RLS is essential to ensure timely diagnosis, enhance support for affected individuals, and promote advancements in research and treatment.

Q. You aspire to have a career in the medical field. How will you employ your newfound knowledge of RLS in the future?

A. As a future healthcare professional interested in pursuing neurology, I hope to integrate my understanding of RLS into my approach to patient care. By recognizing the symptoms and implications of RLS, I can effectively assess and address the needs of individuals affected by this condition. Additionally, this internship has introduced me to the importance of medical advocacy and the need for more funding and research. I hope to contribute to advancements in RLS diagnosis and treatment by advocating for improved access to resources and research funding.

February 16, 2024

Creating Connections on Capitol Hill

By Adrianna Colucci, RLS Foundation Communications Coordinator

November 24, 2023

Your Generosity Can Change Lives: The Power of Giving Tuesday

By Clara Schlemeyer and Adrianna Colucci

Among the busyness of the holiday season, don’t forget to pause and reflect on the friends, family and organizations that have positively impacted your 2023 year. Giving Tuesday, which is celebrated on the Tuesday following Thanksgiving, is a global movement that encourages people to contribute to the charitable organizations that largely influence their lives. As you harness compassion and generosity during this season of giving, consider extending it to the Restless Legs Syndrome (RLS) Foundation. Participating in Giving Tuesday at the RLS Foundation is an opportunity to make a difference and support those suffering from this often devastating disease.

The Impact of Giving Tuesday

Your participation in Giving Tuesday is essential for providing the means to fund critical research that aims to improve diagnosis methods, better our understanding of RLS, and develop more effective treatments. You become part of the solution to this complex medical challenge. Further, Giving Tuesday offers a unique opportunity to connect with the RLS community. People from all walks of life come together with a shared purpose – to support those living with RLS. You can become part of a supportive network that provides comfort and encouragement to individuals and families affected by RLS.

Education and Awareness

Another crucial aspect of the RLS Foundation’s mission is enhanced education and awareness. Through Giving Tuesday donations, the Foundation can create and distribute valuable resources, organize awareness campaigns, and promote a better understanding of RLS among healthcare professionals and the public. Our resources include over 30 patient handouts, a monthly webinar series, a quarterly magazine NightWalkers, and a free physician education webinar series. By participating in this annual event, you help dispel the misconceptions and stigmas often associated with the condition.

The Joy of Giving

Your participation in Giving Tuesday at the RLS Foundation extends far beyond just supporting a good cause; it’s also about experiencing the joy of giving. The act of contributing to something greater than oneself can be immensely fulfilling. Knowing that your donation, no matter how small, can make a difference in someone’s life is a powerful motivator and a source of personal satisfaction.

The importance of Giving Tuesday lies in its ability to inspire philanthropy and unity and serves as a powerful reminder of the impact we can collectively achieve as a community. Your participation will further our outreach related to RLS research, advocacy and education. So, mark your calendar for Tuesday, November 28, open your heart, and make a meaningful contribution this Giving Tuesday to help the RLS Foundation in its mission to improve the lives of countless individuals living with RLS.

November 2, 2020

Dr. John Winkelman and Karla Dzienkowski Receive the 2020 Ekbom Award

Two unsuspecting recipients were awarded the 2020 Ekbom Award while live streaming on the 2020 RLS Foundation Virtual Summit. This prestigious award honors individuals who have enhanced the lives of people with RLS and made significant contributions to the RLS community. Winkelman, who was in transit to join a panel of RLS experts on the Zoom meeting, accepted the award from his car! Dzienkowski accepted her award from her daughter, Ali Dzienkowski, at her home office while hosting the RLS Virtual Summit.

John W. Winkelman, MD, PhD

John Winkelman, MD, PhD is currently the Chief of the Sleep Disorders Clinical Research Program at Massachusetts General Hospital in Boston. John received his PhD in Psychobiology from Harvard University, an MD from Harvard Medical School and then completed both a residency in Psychiatry and a fellowship in Sleep Medicine at Massachusetts General Hospital. Winkelman has served on the RLS Foundation Medical Advisory Board, which later became the combined Scientific and Medical Advisory Board, since 2001. He was among the researchers who conducted studies that led to the approval by the FDA, in 2005, of the first dopamine agonist for treatment of RLS. He designed and is managing a major research program to measure the long-term efficacy and safety of opioids to treat RLS – The Opioid Registry. That groundbreaking program, now in its third year, has some 500 participants. He has recently contributed to the Mayo Clinic Proceedings Revised Consensus Statement on the Management of Restless Legs Syndrome to be published in early 2021. But Winkelman's life work in RLS research is not the only story here. His treatment and care of his thousands of RLS patients over the years is what makes him so beloved by this community. His persistence and dedication to providing relief to his RLS patients has changed lives and sometimes saved lives when RLS seemed to crush all hope of living with this disease.

"John Winkelman has devoted his life's work to helping RLS and sleep related patients access to the correct and most up to date medications in hopes of a more normal life. He is truly deserving of this Ekbom Award and I, as well as his many patients, thank him for his passionate commitment to RLS." - Bobbie Kittredge, 2016 Ekbom Award recipient

“William Osler said: "The good physician treats the disease; the great physician treats the patient who has the disease.” John has brought his intelligence, energy and enthusiasm to inhabit the realm of Restless Legs Syndrome, so as to better understand the patient and their suffering. Thus, he is truly deserving of this award.” - Christopher J. Earley, MB, BCh, PhD, FRCPI, 2017 Ekbom Award recipient

Karla M. Dzienkowski, RN, BSN

Karla Dzienkowski, RN, BSN became the executive director at the RLS Foundation in 2014. Memberships and donations were no longer growing and the Board of Directors recognized the need for a dynamic leader to put the organization back on a growth path while creating new initiatives to improve the lives of those living with RLS. Fortunately, the right leader was available. Dzienkowski had served on the RLS Foundation Board of Directors from 2004 – 2009, as its Vice-Chair from 2007 to 2009. Her leadership of the organization has been powered both by her training as a nurse and her experience as a mother with a daughter with RLS.

Since accepting the position as executive director, Karla has broadened the base of support and created new programs supporting the RLS community. Working with a small, energetic staff, memberships have doubled and the Research Grant Program has been re-energized. Dzienkowski has spearheaded innovative programs ranging from the 2018 RLS Patient Symposium and the RLS Physician Education on-demand series to developing a targeted collection of RLS resources for children and teens with RLS. She has built a strong RLS advocacy program and expanded the RLS Quality Care Center Program to eleven centers with more being certified in the coming months. All of her efforts have positioned the Foundation to begin its fourth decade of service to the RLS community as the premier patient-centered organization working on behalf of everyone with the disease.

“As someone who has shown a rare combination of drive and imagination, giving all of herself and then more to this organization, I cannot think of anyone more deserving of this award than Karla.” - Christopher J. Earley, MB, BCh, PhD, FRCPI, 2017 Ekbom Award recipient

Karla Dzienkowski's Ekbom Award should not be a surprise to anyone who knows her. She has brought change and growth to the Foundation with her positive attitude and sheer determination to make this a great organization. Thank you, Karla, for your commitment to excellence. - Bobbie Kittredge, 2016 Ekbom Award recipient

Past recipients of the Ekbom Award include Lewis Phelps (2018), 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.

Watch the videos here:

John Winkelman, MD, PhD - https://www.youtube.com/embed/itwjly6kp6E

Karla Dzienkowski, RN, BSN - https://www.youtube.com/embed/n8RW9r0Zul8

July 17, 2020

Compelled to Act

By Stephen Smith, RLS Foundation member and volunteer

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.

June 14, 2019

San Antonio, Texas is host to Sleep Specialists from around the world

By Maddie Lionberger

SLEEP 2019, the annual meeting of the Associated Professional Sleep Societies, was held in San Antonio, Texas this year – so the Foundation staff set out on a road trip! Located less than 100 miles south of the RLS Foundation’s Austin headquarters, we packed up and Karla led the charge to the home of the Alamo! A three-day conference, SLEEP allows us to educate healthcare providers focused on sleep medicine from all over the world about RLS and the resources that we provide to them and to their patients. It is also an opportunity for staff to refresh our knowledge base by learning from the best and brightest clinicians and researchers in sleep medicine.

The 2019 SLEEP Conference included several RLS research posters and sessions, many taught by our own Scientific and Medical Advisory Board members. One important session that we were pleased to see on the agenda, led by the Foundation advisory board member, John Winkelman, MD, PhD, "Should Sleep Medicine Providers Prescribe Opioids for RLS?" The course will hopefully clear up any misconceptions about the use of low total daily dose opioids used to treat severe RLS and provide healthcare providers with more knowledge about this important treatment option when all else fails. Dr. Winkelman shared preliminary data on his RLS Foundation funded Opioid Registry and encouraged physicians in attendance who have RLS patients treated with opioids to enroll as study participants in this longitudinal study that will assess long-term safety and efficacy of opioid medications.

During the conference two significant courses on RLS were available for meeting attendees. On Sunday, Dr. Richard Allen, Dr. Diego Garcia-Borreguero, Dr. Sergi Ferré and Dr. Christopher Earley presented on the Advances and Practical Guidance for Opioid, Iron Treatments and Augmentation Management in RLS. On Monday, Dr. Mark Buchfuhrer gave a presentation on the diagnosis, treatment and management of all forms of RLS from mild to severe.

The RLS Foundation’s booth in the exhibit hall gave us the chance to speak directly with sleep professionals to highlight the many resources that we offer to their patients and keep them educated on the latest developments in treating RLS. We were very encouraged by the reaction to our newest on-demand RLS Physician Education Webinar Series. Many had heard about the series, but were unable to attend the live broadcast; offering the free series as a download to watch at their convenience is a game-changer.

The Foundation’s Quality Care Center certification brought SLEEP attendees to the booth to learn more about the qualifications required to become an RLS certified Quality Care Center. The Foundation’s Board of Directors along with the Scientific and Medical Advisory Board are committed to building a network of Quality Care Centers to provide expert care and specialized disease management for the RLS patient.

“Our presence at SLEEP every year is a great opportunity to spread awareness about the extensive collection of scientific-based RLS resources available to physicians, nurse practitioners and other healthcare providers as they treat more complicated RLS cases” says Karla Dzienkowski, RLS Foundation executive director. “Thanks to the many RLS experts on our RLS Scientific and Medical Advisory Board who serve as webinar presenters and help us develop our library of materials. With their help we are able to offer scientific based resources for providers, researchers and most importantly, RLS patients. SLEEP helps us distribute resources widely to those patients, caregivers and healthcare providers that need them.”

New Approach to Treat Augmentation

The RLS Foundation's Scientific and Medical Advisory Board (SMAB) recently approved funding for a research proposal by Dr. William Ondo of Houston Methodist Neurological Institute, an RLS Quality Care Center.

After a rigorous selection process, the committee approved Dr. Ondo's grant for Foundation funding for a research study. Dr. Ondo explains:

"Augmentation is a condition where RLS symptoms start to worsen after initially improving, while on dopamine agonist treatments such as pramipexole, ropinirole, Neupro, and levodopa. Since most patients with an urge to move initially respond to properly dosed dopaminergic medicines, augmentation is arguably the biggest practical impediment to successful chronic management of RLS.

"The exact mechanism of augmentation is not known, however, based on animal studies we performed, we hypothesize that it is caused by increased activity of dopamine type I (D1) receptors. In animal models these receptors in the spinal cord increased when mice models of RLS were chronically treated with typical dopamine drugs, specifically pramipexole. Dopamine type I receptors have many features which are the exact opposite of dopamine type 2 (D2) and 3 (D3) receptors in the spinal cord. The dopamine medicines still stimulate these D1 and the D2/D3 receptors, which we feel results in the contradictory effect that they both improve and worsen RLS at the same time.

"We have identified an investigational drug which blocks D1 receptors without blocking D2 and D3 receptors, ecopipam. In this small trial, we will administer this drug in a blinded manner to patients already on dopamine medications who have augmentation, to see if it can reverse the augmentation and improve their symptoms."

Dr. Ondo serves as director of the Movement Disorder Clinic at the Houston Methodist Neurological Institute. Throughout his career, Dr. Ondo has written more than 250 articles and book chapters. A movement disorder specialist, he is board certified in adult neurology and sleep medicine. Dr. Ondo's research specializes in Parkinson's disease, essential tremors, the use of botulinum toxins in treating movement disorders, and restless legs syndrome. At the RLS Foundation, Dr. Ondo is an active member of the SMAB Opiates Committee.

“Dr. Ondo’s proposal presents an exciting opportunity to investigate a new approach to treat RLS augmentation," says RLS Foundation Executive Director Karla Dzienkowski. "As the only organization with a dedicated RLS Research Grant Program, it is our hope that research like Dr. Ondo’s will lead to new and better treatments and one day, a cure for patients living with RLS.”

Since its inception in 1997, The RLS Foundation's research grant program has funded nearly $1.6 million in competitive research grants for the study of restless legs syndrome. In 2016, the Foundation committed to develop this program even further by:

• Increasing research funding to $200,000 annually for up to eight pilot grants
• Accepting grant proposals on a continual basis, rather than just once per year, using a rigorous NIH review to evaluate grant proposals
• Providing counsel to RLS Foundation grant seekers to improve the strength and outcomes of their research studies
• Identifying potential sources (NIH) of later-stage funding for grantees
• Expanding the reach to biotech and medical technology companies as collaborators that can help achieve progress toward a cure

Interested in applying for a research grant on RLS? Read about the guidelines and application here.

Promoting Awareness – One Gift Membership at a Time

By Barbara Faraone

When long-time RLS Foundation member Barbara Faraone sees the need for education, she takes action! In the past several years, Barbara has purchased over 25 RLS Foundation gift memberships for physicians, nurses, pharmacists, hospital administrators and others to promote education and awareness about RLS. At the RLS Foundation, we are extremely grateful to individuals like Barbara who use whatever creative means they have to raise awareness for RLS. Barbara, thank you for making a difference – you are truly an RLS hero!

I’m a 79-year-old grandmother who has suffered with restless legs since at least 18 years old, although I suffered from leg pains (or as the doctors used to say, “growing pains”) from a very young age. I remember going to high school and being so glad that classes were only 45 minutes long. I would always try to sit in the back of the room, as I was always moving about. I was often asked why I never sat still. I never really had an answer for people, but thought it was just me.

Even going to college, my place was always in the back of the room; it was just plain uncomfortable to sit, and I preferred to stand. Thus, standing in the back of the room was enjoyable for me.

I became a teacher of third grade, and that suited me just fine. I never sat at my desk. I was always about the room with my children, working on projects or just tutoring one-to-one, thus walking a lot. With age came marriage and two children. This, too, was always an active time for me. It was during this time that I began to notice that sleeping with covers over my legs was not good for me. The pressure of blankets just made my kicking in bed worse. I was never one to cuddle in bed, as the legs would not stay still. I did not know what to do to stop this kicking, and it was not welcome to my husband, as you can imagine.

As years followed, I found myself being awake for many nights and often going from bed to couch to floor. I tried sleeping with my back on the floor and legs up on the wall or the back of the sofa. I tried hot baths, warm milk, Bengay, soap under the mattress, and any other odd suggested thing to try, of which there were many. I must say that a scotch and water would often calm them during the evening, but it did not last through the night.

I soon learned to exist on three to four hours of sleep and sometimes an afternoon nap. I just figured it was something I had to live with. I might add that I had all the muscle and nerve tests done over a period of years, but nothing seemed to show up wrong.

Doctors were of no help until my general practitioner went to a lecture about RLS at the local hospital. When he came back from this, we started in on the approved medicines available at the time. That was some 20 years ago. Since then, I have tried them all in many combinations. They would seem to work, but within a short time I was right back to my old self of discomfort most of the night. When the discomfort turned to pain, I began the treatment of painkillers. Yes, they worked, but got to be an all-day thing. And oh my, what it did to my system and mind. This was awful. I had to come off them.

I went to an RLS meeting in San Antonio and met the folks there. With their help, I made contact with a specialist at an institution that is now a certified RLS Quality Care Center. I call him my “savior,” as with his help and methadone, I do sleep, and my life is somewhat normal – or what I think of as normal. My legs are not really still during the day, but my friends have gotten used to me always moving. Thank goodness for friends.

My legs hurt most of the day, but during the night they are quiet enough that wherever I fall asleep, I sleep – whether it be in bed or on the couch.

Now, I have asked for years, what can I do for others who have RLS? Yes, I can contribute to the RLS Foundation, and it does help, especially in research. But I feel that I need to do something more to help educate medical providers.

So … I have been buying RLS Foundation memberships for all the doctors I meet in the hopes they will read NightWalkers and maybe learn something. Maybe they will believe what I say to them.

For example, I found a local hospital was advertising that they treated RLS. I went to see the doctor, only to find out he knew nothing of RLS. In fact, he called my druggist, as he thought I was addicted and needed help, and had no idea the uses for methadone. My druggist, who has a subscription to NightWalkers, gave him a 15-minute lecture as to the uses of methadone. I had the RLS Foundation send the doctor and hospital administrator a gift membership with information about RLS and a copy of NightWalkers.

I think my count of current gift memberships is up to something like 12 doctors and hospital administrators, and then I add friends or nurses or whomever needs an education about RLS. Has it made a difference? I don’t know, but I do know they are getting the correct information, and this can only help in the future.

An excerpt from the Summer 2016 edition of NightWalkers, the Foundation's quarterly magazine. Become a member today to receive this and other member benefits!

You Are Not Alone

An Online Community Available 24/7

With the stress that the holidays can bring, it's a comfort to know that you are not alone in your struggles with RLS. The RLS Foundation's discussion board provides an avenue for individuals to post anonymously about their symptoms, treatments and other coping strategies. It is a supportive, hopeful environment for those who are looking to share their RLS stories with others who know exactly what they're going through.

The discussion board is run by five Foundation volunteers who serve as moderators. Topic areas currently include:

Physical Treatments
Non-drug therapies (methods of relief that don't involve swallowing or injecting anything), including compression, heat, light, stretches, acupuncture, etc.

Non-prescription Medicines, Supplements, Diet
Substances that are ingested, inhaled, or otherwise consumed for the purpose of relieving RLS, other than prescription medications. For example, herbal remedies, nutritional supplements, diet, kratom, and marijuana (for now) should be discussed here. Tell others of successes, failures, side effects, and any known research on these substances.

Prescription Medications
Prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Topic of the Year: Augmentation
The topic of the year 2015 for the RLS Foundation is Augmentation. Use this forum to discuss any issues associated with Augmentation

Special Populations: Pediatric, Pregnancy, Secondary, etc.
RLS occurs more frequently in certain populations, including people with end-stage renal disease, women during pregnancy, and people with iron deficiency. RLS in the elderly and children brings other challenges. Sharing your experiences may be extraordinarily helpful to others.

Help for Relationships
Share how living with this disease can and does impact your relationships. How do you cope? What questions to you have?

General Topics
For everything and anything else not covered in the other RLS/WED sections.

Everything Else... Just No RLS!
It's nice to realize that there is life beyond this disease and have an opportunity to get to know our online family in a different context.

To get started, learn more about the simple, free registration here. Questions or concerns? Contact the discussion board moderators at rlsfmods@rlsgroups.org.

Remember posts and information on the discussion board are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.

Helpful Links for RLS Sufferers who Want to Learn More

Below is a presentation from the Foundation's 2016 educational webinar series, "Coping with RLS and What Sleep Deprivation Does to You." This webinar is presented by Dr. Jeffery Durmer, CMO of FusionHealth and member of the RLS Foundation Scientific and Medical Advisory Board. Visit www.rls.org for more information about our webinar series and other Foundation programs!



Additionally, this Buzzfeed article has some great infographics about tips for getting a good night's sleep!

Important Tips to Help with Your Sleep Cycle

For RLS sufferers, it is oftentimes nearly impossible to fall and stay asleep. Many have reported to the Foundation that they get as little as 2-4 hours of sleep per night. When the recommended amount of sleep is 7-9 hours each night, such little sleep can have debilitating effects on waking life.

However, it is recommended for those with RLS to get at least 30 minutes of exercise a day, as regular exercise can significantly improve and stabilize the sleep cycle. Studies from the National Sleep Foundation have continuously shown us that:

1. Exercise reduces stress and tires us out, allowing us to have a longer and better quality sleep
2. Sleep disorders like insomnia, sleep apnea, restless legs syndrome, and narcolepsy cost millions in medical costs and disrupt work and social lives
3. Those that exercise report getting a better quality of sleep than those who do not, and are less likely to have sleep issues

Exercise in the early hours of the morning or afternoon can have a positive effect on the natural circadian rhythm, or "sleep-wake cycle." Exercise raises the body's temperature for roughly four to five hours before gradually falling, thus helping one feel sleepy in the evening around bedtime. However, it is important to note that especially for RLS sufferers, rigorous exercise before bed should be avoided, since it can stimulate the brain and prevent one from falling asleep.

Meditation, yoga or light stretching are great options for easing RLS symptoms before bed, as they can help settle both the mind and body. Additionally, the Foundation's Sleep Diary is a great resources to help find sleep cycle patterns and potential RLS triggers.

Other suggestions for getting a good night's sleep include avoiding technology before bed, sticking to a consistent schedule and cultivating a relaxing evening ritual for yourself. Remember to refrain from any activity that your doctor has specifically told you to avoid. Read more about healthy lifestyle habits for RLS sufferers on our website.

Check out the original article about sleep and exercise and its great infographics at CapeCod.com.

Both Conditions Have Serious Consequences on Sleep Cycles

Like restless legs syndrome, migraines can be horribly debilitating. According to the Mayo Clinic , "a migraine can cause severe throbbing pain or a pulsing sensation, usually on just one side of the head. It's often accompanied by nausea, vomiting, and extreme sensitivity to light and sound."

In fact, two-thirds of individuals that participated in the Migraine in America 2016 survey , reported that their symptoms lasted five days or more. That's more than five days of excruciating pain, sometimes enough to be disabling.

To make matters worse, one in six reported that they also experience restless legs syndrome during a migraine attack. These are two serious conditions that interfere with sleep, potentially resulting in a decreased quality of life.

In fact, 66 percent of survey respondents said that lack of sleep could bring on a migraine. The irony is that migraines make it nearly impossible to fall into a restful sleep, yet sleep is one of the best tactics at soothing a migraine.

Read more about migraines and their adverse affects on various aspects of life in Reader's Digest.

Three Individuals Harness Social Media to Have Their Voices Heard

For RLS Awareness Day 2016, we at the Foundation were floored by the tremendous force of advocacy shown by our RLS family, especially through social media. For one of our Ten Ways to Spread RLS Awareness , we encouraged everyone to take to social media, change their profile pictures to our Awareness Day image and to tag the Foundation. The following individuals went above and beyond the call of duty - cheers to our winners!

Erin (Twitter)

Erin took to Twitter to retweet nearly all of our Awareness Day messages and get the word out. Go Erin!

"RLS Awareness matters and means so much to me for educating others! I've had it since I was at least 9 years old, and thought it was just something weird with me until I'd heard my mom talk of her dad's restless legs syndrome when I was a teen... I was amazed to hear her describe partially what I'd thought I was alone in. There [are] too many things that too many dismiss to be 'all in one's head' and RLS should NOT be one of those!"

Renee (Facebook)

Renee was a true RLS awareness advocate - posting this message over a month before RLS Awareness Day 2016, and urging others to educate themselves about this little known yet devastating disease:

"For the next 6 weeks my Profile Photo will be set to bring awareness to Restless Legs Syndrome (RLS). Many of you may not know that I (and my mom) suffer greatly from this terrible disease. While most would consider this not a life threatening disease...I can tell you first hand that IT IS life altering.

"There are countless nights of not sleeping because my legs will not stop moving (even with medications), or have a creepy crawling feeling, they jerk to the point of knocking my husband out of bed or forcing me to get up and walk around the house in the middle of the night. During the day my legs are always moving, always wiggling, or always jumping...to the point of embarrassment at times. The medications available for RLS unfortunately come with side effects that are not pleasant...and I know them all too well.

"PLEASE join me in raising awareness for RLS by:

#1 Liking my profile photo (it will also enter me into a contest to win a prize)
#2 By please take the time to read about it and understand it.
#3 If someone you know has RLS...please pray for them, encourage them and support them.

#RLSAwarnessDay2016 #Cure4RLS #YouAreNotAlone"

RLS Advocacy Award: Gary (Facebook)

Gary used Facebook to reveal to his network that he had been struggling with RLS since 2011, something that he had been desperately trying to hide. This year for RLS Awareness Day, Gary found the bravery to overcome his insecurities and open up.

"RLS Awareness Day matters to me because it's important to put a face and life story to this condition, that is often dismissed as 'not real'. I was diagnosed while being a full-time graduate student, studying to become a higher education academic advisor; this lifestyle requires a lot of reading, sitting, and being still from the waist down! My husband is great with assisting me with RLS pains via deep tissue massage and adapting his life around me. I want to raise awareness by 'coming out' about this aspect of my life in hopes to inspire others to take steps with getting evaluated for this medical condition; to encourage the general public about this condition; and to encourage medical professionals to take RLS more seriously in their practice."

We want to give a HUGE shout-out to YOU, our incredible members, for your ongoing support of the Restless Legs Syndrome Foundation! Thanks to your loyalty and generosity, we are nearly 4,500 members strong and growing every day! 

If you're not sure you've renewed yet for our 2017 fiscal year (starting October 1st), check your membership "expiration date" that is now printed on the back cover of NightWalkers, right above your name and address. If it says "9/30/2016" on your Summer 2016 issue and you haven't yet paid your renewal dues by mail or through our website in the past 30 days, your membership may lapse as of October 1st ... disrupting your NightWalkers subscription as well. 

To make sure you won't lose your exclusive RLSF member benefits -- including 24/7 online access to publications, NightWalkers archive, educational webinars & more -- and to continue receiving NightWalkers, our acclaimed quarterly magazine ... please RENEW YOUR MEMBERSHIP TODAY! Thank you. 

If you have any questions about your RLSF membership, please contact Faith at faith@rls.org.

Zibby and Faith

For the last two years, the Foundation has had the privilege of working with two exceptional employees - Faith and Zibby! Read more about these members of our RLS Foundation family below.

Meet Zibby

Every organization has one individual with a vast set of experiences that makes them a “jack of all trades.” At the Foundation, Zibby Crawford, the Foundation’s Marketing and Communications Coordinator is this individual. Zibby covers many areas of responsibility, from planning and coordinating the RLS Foundation's presence at meetings and conferences to compiling our eFriends mailing and managing our technological upgrades … It’s a good thing she is the ultimate multi-tasker! Her thirty years of marketing experience has enhanced our outreach.

Before the Foundation, Zibby worked in the high tech industry but fell in love with the nonprofit sector when she served as Board President for the National Charity League, Capital of Texas Chapter. Zibby's warm, bubbly and outgoing personality make her a joy to work with. She is always ready to teach a new skill or lend a hand. She has raised four kids, is waiting patiently on grandkids, but until then has a chihuahua rescue dog, Daisy.

Zibby’s motto is “Spread joy!” and she carries that spirit with her each and every day.

Meet Faith


When calls come in to the Foundation with questions, concerns or requests, they are answered with a positive, friendly voice ready to help. Faith Duncan is usually the first to greet callers, ready to help with any and all issues. Many times it's as simple as helping members log on to the Members Only section of our website. But, Faith has fielded any number of calls ranging from despair about this often debilitating disease, to requests from volunteers wanting to share knowledge with others in their community.

Faith put aside a career as an engineer to be a stay at home mom for many years. She became an active member of a non-profit where she served on the Board of Directors at the National Charity League, Inc., Capital of Texas Chapter, a mother-daughter service organization. Now, with her youngest in college, Faith has taken on her position as Member Services Coordinator and tackled some difficult software and processes with her very analytical, engineering approach and problem-solving abilities!

We are very fortunate to have her very sharp mind as well as her compassionate spirit - Faith has made such a difference here at the Foundation. We wish her a Happy Birthday this month, and hope you have the opportunity to experience her uplifting, positive attitude in the future ... you are not alone!

Meet Karla Dzienkowski, RN, BSN:

Executive Director

In January 2014, Karla accepted the position of executive director. In two and a half short years she has made a huge impact on this organization.

Karla first learned about RLS in her dual roles as a mother and registered nurse when her daughter, then 11 1/2 years old, began to experience symptoms that doctors could not explain. Karla crossed the country looking for answers before finally finding a knowledgeable doctor, and shortly after, the RLS Foundation.

Eager for answers, Karla joined the Foundation’s Board of Directors in 2004 and served through 2009. As a board member, she encouraged pediatric RLS research, along with programs to increase awareness and education of RLS in the medical and school communities. Karla believes that much work has yet to be done in disseminating information about RLS to the public and the medical community, and that much more research into its cause and treatment is needed. Karla drives the mission of the Foundation with her leadership, and she is passionate about promoting research for better treatments and a cure.

Karla explains “The RLS Foundation serves as a beacon of hope, help and support for individuals and their families who deal with the daily impact that RLS has on their life. I want to thank each of our members for supporting the Foundation because you gave me and my family a life-line when we desperately needed one. With the help of the Foundation we were able to find the care my daughter needed and get back to living life.”

Karla has vast experience working with non-profits, including active participation for many years in Girl Scouts, Austin Children's Museum and three years serving on the Board of Directors for National Charity League, Inc., with one year as board president of the Capital of Texas Chapter. Karla, her husband, John, and their two daughters have recently welcomed a new Alaskan Klee-Kai puppy named Arrow into the family.

Karla is truly the Foundation’s #1 cheerleader. She always responds to difficult inquiries that come to the Foundation with genuine empathy, support and deep knowledge of RLS, drawn from her roles both as a family member impacted by the disease and as a nurse with over 30 years of medical knowledge and experience.

We recently received this note to Karla from someone with whom she was corresponding: “I also thank you for the empathetic warmth of your email. As you know, people in my situation feel very stressed and suffer from social isolation. It means a lot to feel contact with someone who understands. I think your organization is very blessed to have someone like you working in your position. I hope they appreciate you!”

Do we appreciate Karla? … Beyond measure!