JULY 15, 2018

In June, the RLS Foundation visited Washington for a second round of meetings to advocate for research funding and for continued patient access to opioid medications to treat severe RLS.

Led by Executive Director Karla Dzienkowski, the Foundation team met with members of Congress who are on key legislative committees that have jurisdiction over health policy, and with two groups at the National Institutes of Health (NIH).

“Our meetings at Congress and the NIH were very important to moving our advocacy program forward,” Dzienkowski says. “We had the opportunity to meet with Congressional staff who are directly involved in opioid-related legislation. We are also excited to be deepening our relationships at the NIH and taking meaningful steps to advance RLS research.”

The Foundation team met with staff in the offices of Sen. Sheldon Whitehouse, D (RI); Sen. Bob Casey, D (PA); Sen. Elizabeth Warren, D (MA); Rep. Markwayne Mullin, R (OK); Rep. Conor Lamb, D (PA); Rep. Katherine Clark, D (MA); and Rep. Michael Burgess, R (TX).

The discussions centered on the need for a safe harbor for RLS in any upcoming legislation or policy that might restrict access to opioid medications. “Staffers shared that over 50 opioid bills are under consideration,” says Dzienkowski. For the millions of Americans who have chronic, unrelenting RLS, opioid medications taken in low total daily doses can be very effective for controlling symptoms.

The Foundation team also asked legislators to support two research priorities: $2 billion in increased funding for the NIH in fiscal year 2019; and continued inclusion of “sleep disorders” as a category eligible for grants by the Department of Defense.

At the NIH, John Winkelman, MD, PhD, gave a presentation on behalf of the Foundation to the Sleep Disorders Research Advisory Board (SDRAB) of the National Heart, Lung, and Blood Institute. Dr. Winkelman is director of the RLS Quality Care Center at Massachusetts General Hospital and a member of the Foundation’s Scientific and Medical Advisory Board.

The SDRAB is a federal advisory committee that sets the strategy for sleep disorders research at the NIH, and the meeting was an opportunity to highlight the unmet needs of RLS patients. RLS Foundation Board member Linda Secretan is one of two patient advocates on the SDRAB.

In his presentation, Dr. Winkelman discussed limitations of RLS treatments and the importance of research, including his current study to evaluate the long-term use of opioids to treat RLS.

“We had a very positive discussion,” Dr. Winkelman says. “It was important to describe the existing landscape of RLS treatment options, particularly as not everyone at the table was fully aware that many people with RLS continue to suffer for a variety of reasons, such as augmentation. It was equally important to raise awareness about the effectiveness of low total daily doses of opioid medications as a therapy for severe RLS.”

The Foundation also visited the National Institute on Drug Abuse and met with members of the Division of Neuroscience and Behavior, which supports research on drug use and addiction. Dr. Winkelman led a lively discussion on the neuroscience of RLS and how new drug therapies might be developed to treat the disease.

“We’re always looking for new ways to intervene to prevent or treat RLS,” Dr. Winkelman says. “We discussed what we already know about what causes RLS in the brain, and the various ways we might learn more about the neurological pathways involved. We came away with new ideas to explore for research.”

The meetings were coordinated by the Health and Medicine Counsel of Washington (HMCW), a government relations organization with nonprofit and healthcare industry expertise that is partnering with the RLS Foundation to guide its advocacy efforts. In addition to Dzienkowski and Dr. Winkelman, the delegation included Kris Schanilec, RLS Foundation communications; and Dane Christiansen, Dale Dirks and Peter Herzog of HMCW.

How You Can Take Action

The RLS Foundation is working hard to advocate on behalf of the RLS community. The Foundation needs you, an RLS patient or family member, to amplify these efforts by meeting with your legislators. You can meet with your members of Congress at offices in your home state or in Washington. Elected officials want to hear directly from their constituents, and sharing your personal experiences is the best way to educate them about the needs of RLS patients.

The Foundation has resources to help you get started. Contact Peter Herzog at herzog@hmcw.org or visit www.rls.org to learn more.

RLS Advocacy: Our Progress

Since October 2017, the RLS Foundation and its partners at HMCW have:

• Delivered letters to members of Congress from 200+ individuals who responded to a request for personal stories about opioid medications and RLS. 
• Attended Congressional meetings and hand-delivered position letters to committees that are crafting legislation related to opioid medications and/or biomedical research funding. These efforts helped support passage of the FY2018 appropriations bill, securing a $3 billion increase in funding to the NIH. 
• Delivered 40 letters to members of the Senate Defense Appropriations Subcommittee from RLS Foundation members who responded to an Action Alert to support inclusion of “sleep disorders” on the Department of Defense Peer Reviewed Medical Research Program in FY2019. 
• Met with 23 Congressional offices, three NIH institutes, the NIH Sleep Disorders Research Advisory Board, and the U.S. Food and Drug Administration (FDA). 
• Coordinated or supported meetings by the RLS Foundation team and Foundation members with US senators and representatives of 13 states.

Why Are Opioids Needed for RLS?

About 1 in 33 Americans – 3 percent of the US population – has RLS that is severe enough to need daily medical treatment. Unfortunately, treatment options are limited, and FDA-approved medications for RLS often have serious, long-term side effects.

When all other options have failed, opioids at low total daily doses are an established, highly effective treatment option for people with RLS. Clinical experience among experts has not shown the degree of drug misuse, dependency or addiction commonly associated with opioid use to treat chronic pain. The RLS Foundation actively conducts educational outreach to help ensure that healthcare providers know how to diagnose and treat RLS, including appropriate use of opioid medications. For more information, visit www.rls.org.

March 5, 2018

Giving You A Voice in Washington

By Kris Schanilec

On February 22 and 23, members of the RLS Foundation staff and leadership team traveled to Washington, DC, to advocate on behalf of the RLS community.

The delegation met with staff at the National Institutes of Health (NIH), US Food and Drug Administration (FDA), and Congress. Their goals were two-fold: to educate policy makers about RLS and the need to ensure that RLS patients continue to have access to opioid therapies; and to promote funding for RLS research that will advance better treatments and a cure.

"We are focused on making our collective voice heard in Washington to help ensure continued access to opioids as a treatment for individuals with severe cases of RLS," Executive Director Karla Dzienkowski, RN, BSN, said. "We hope to enhance and expand our advocacy efforts so that no one in our community is denied access to this critical treatment option."

For the millions of people in the US who have chronic, unrelenting, nightly RLS symptoms, opioids may offer the only hope for long-term relief, when all other treatment options have failed. If these patients lose access to opioids, they will lose the ability to manage their symptoms so that they can function in their work and social lives.

During the visit to Washington, the Foundation’s partner, the Health and Medicine Counsel of Washington (HMCW) -- a government relations organization that works with nonprofit organizations and companies in the healthcare industry -- organized opportunities for the RLS Foundation to dialogue with lawmakers, policy makers and others who influence regulations related to opioids and biomedical research.

Day 1: Meetings with NIH and FDA

On February 22, the RLS Foundation hit the ground running. Led by Dzienkowski, the RLS Foundation team included Ronald Barrett, treasurer of the Board of Directors; Dr. Christopher Earley, chair of the Foundation's Scientific and Medical Advisory Board (SMAB); Dr. Michael Silber, SMAB member and head of the Opiate Committee; Kris Schanilec, RLS Foundation communications consultant; Peter Herzog, HMCW legislative associate; and Dale Dirks, HMCW president.

"Our role here is to advocate for an open-minded view on the value of opiates in treating RLS," Dr. Earley said. "It is an important treatment option that needs to be continued and maintained, such that patients with severe RLS, if they need to use these vital medications, are not restricted in any way."

Day one included meetings with leaders of the National Heart, Lung, and Blood Institute (NHLBI), the National Institute of Neurological Disorders and Stroke (NINDS), and the program staff at the FDA.

During meetings with the NHLBI and NINDS (both are institutions within the NIH), the RLSF team discussed ways to increase funding for RLS research and explored possible areas for collaboration. The NIH staff were supportive of the Foundation’s goals and offered many suggestions to explore in follow-up. “The fact that you've taken the time to network with us is a powerful statement," said Dr. Nina Schor, who is deputy director of the NINDS. “RLSF has provided vital input to NINDS in our efforts to support research that will decrease the burden of neurological illness.”

The Foundation shared the challenges of RLS patients who face limited treatment options, and the specific areas where research is needed to discover and test new therapies. The team also stressed the need for both clinical trials of opioid medications and long-term studies on their safety and effectiveness for treating severe RLS.

These meetings were important to building new relationships with individuals at the NIH who can champion the RLS cause and influence decisions about RLS research funding at the NHLBI, NINDS and other institutes within the NIH.

At the FDA, the RLS Foundation met with the office of Public Affairs and Stakeholder Engagement (PASE) at the Center for Drug Evaluation and Research (CDER) to discuss the importance of low total daily dose opioids as an RLS treatment option. The Foundation shared stories of individuals in the RLS patient community who have been taking opioid medications for decades and are encountering barriers to accessing their prescriptions. After highlighting information on new opioid treatment guidelines for patients with RLS, the team stressed the importance of safeguarding access to these medications for RLS patients who genuinely need them.

"The FDA members that we met with recognized the possibility of unintended consequences of heavy-handed restrictions on legitimate opioid use and the potential impact on RLS sufferers,” Barrett said. “Hopefully there will be positive outcomes from our meeting."

Day 2: Championing RLS on the Hill

On February 23, the RLS Foundation team met with Congressional representatives on both sides of the political aisle in 16 Senate and House offices. Meetings included staff members from the offices of Senator Joni Ernst (R-IA), Senator John Cornyn (R-TX), Senator Tina Smith (D-MN), Senator Ted Cruz (R-TX), Representative Rod Blum (R-IA), Representative Tim Walz (D-MN), Representative Roger Williams (R-TX), Representative Mike McCaul (R-TX), Senator Dianne Feinstein (D-CA), Senator Kamala Harris (D-CA), Senator Chris Van Hollen (D-MD), Senator Ben Cardin (D-MD), Representative Judy Chu (D-CA), Representative John Sarbanes (D-MD), and Representative Anna Eshoo (D-CA).

In these meetings, the RLS Foundation delegation explained the specifics of RLS and its devastating effects on the daily lives of millions of Americans. The team delivered nearly 100 letters written by RLS Foundation members, and shared stories that they hear from the RLS community about everyday struggles and increasing issues with access to opioid medications. They stressed the limitations of current treatment options, and that there is no cure for this debilitating disease.

In turn, the RLS Foundation asked that the Congressional representatives support the full $36 billion for NIH funding in fiscal year 2018 so that funds will be available for RLS research and related areas. The Foundation also encouraged the inclusion of “sleep research” as a condition eligible for research grants from the Department of Defense, so that RLS researchers will continue to be eligible for funding through this channel.

Finally, the Foundation pointed to the need for a safe harbor for RLS in any upcoming opioid-related legislation, regulations and policies, so that people with severe RLS who genuinely need opioids to manage their symptoms can continue to access these medications.

These talks were a first step in building relationships with each of the Congressional representatives, and an especially strong connection was sparked with one staffer who has a family member with RLS. The Foundation team will continue to contact these representatives in the coming months to educate them about RLS and the needs of the community.

"It was a very productive visit, and it's just the beginning of our advocacy outreach," Dzienkowski said.

This advocacy trip was an enormous stride for the RLS community and an important milestone in the Foundation’s advocacy initiative. And the fight is far from over. With the help of HMCW, the Foundation will continue to increase awareness among policy makers about the serious nature of RLS, the need for individuals with severe RLS to have access to opioids when they are the best treatment option, and the need for more funding for research that will help identify better treatments and a find cure for RLS.

Your US senators and representatives want to hear from you – their constituent. They are there to represent you. Meeting them is not difficult – it is straightforward and simply a matter of telling your story, sharing your experience and asking them to take your needs into consideration. Want to get involved? Visit the advocacy page of the RLS Foundation website to find out how you can take action now!

Reviewing the Year's Accomplishments

Throughout 2017, with the invaluable support of Foundation members, the Board of Directors, and the Scientific and Medical Advisory Board (SMAB), the RLS Foundation was able to take significant strides on behalf of the RLS community. None of our work would be possible without these passionate individuals, and we thank each and every one of you for the steps you take alongside us. Whether you are sharing a copy of NightWalkers with your friend, distributing Foundation materials among your local medical community, attending an RLS Foundation support group, providing feedback to others on our Discussion Board, sharing Foundation content on Facebook, or simply paying your annual membership dues, YOU are helping us in the fight towards a cure for RLS.

Because of this unwavering support, here are some highlights from 2017 that you made possible:

The RLS Foundation Turned 25! June 17, 2017, marked the 25 year anniversary of the RLS Foundation. In celebration of this milestone, we reduced Foundation membership to $25 for the day, and made the Member Portal open to the public for 24 hours.

Public Service Announcements. The RLS Foundation produced seven RLS public service announcements that were aired on local channels in Texas, and are widely available on our YouTube channel and Facebook page. (Share them with your online network, and let others know that they are not alone!)

11th RLS Quality Care Center Certified. In January 2017, Massachusetts General Hospital joined the Foundation's Quality Care Center Network. QCCs are renowned for outstanding performance in the field and staffed by leading RLS specialists who provide expert care and specialized disease management. Read the press release here.

2017 SLEEP Meeting. This annual meeting, hosted by the Associated Professional Sleep Societies LLC (APSS), is a three-day conference that brings together the best and the brightest clinicians and researchers in sleep medicine. It is the leading world forum to present and discuss the latest updates in the field - and the RLS Foundation was there to give the RLS community a seat at the table for the second year in a row. Click here to read more about highlights from the conference.

Updated Medical Bulletin. The RLS Foundation's Medical Bulletin is a comprehensive bulletin for physicians that provides the latest information for the care and management of RLS patients. In 2017, Dr. Brian Koo of Yale Centers for Restless Legs Syndrome, an RLS Quality Care Center, and other contributors from our SMAB updated this publication to include information on augmentation for healthcare providers. Become a Foundation member to receive your copy!

Funded RLS Studies. The Foundation's Research Grant Program funded two groundbreaking RLS studies in 2017:

1. $37,000 grant to William G. Ondo, MD, of Houston Methodist Neurological Institute (an RLS Quality Care Center) to study a new medicine to treat RLS patients who have augmentation
2. $144,000 two-year grant to John Winkelman, MD, PhD, of Harvard Medical School, for a "Multi-center Longitudinal Pilot Observational Study of Efficacy and Tolerability of Long-term Treatment of Restless Legs Syndrome Using Opioids"

Advocacy. In December 2017, the RLS Foundation kicked off to educate the public, regulatory authorities and elected officials in Washington about the appropriate use of opioid therapy for refractory cases of RLS. Partnering with the Health and Medicine Counsel of Washington (HMCW), we produced a special bonus webinar, "Effective Advocacy and Policy Implications from the Opioid Crisis." In 2018, we will continue to work with HMCW to give the RLS community a voice in Washington. Want to help us take action? Visit our website to learn more and register to join us for the call to action webinar on April 16th, 2018.

Awards. At the end of 2017, the RLS Foundation celebrated receipt of the GuideStar Platinum Seal of Transparency and 4-star rating from Charity Navigator for demonstrating strong financial health and commitment to accountability and transparency.

At the cusp of this new year, 2018 has many great promises on the horizon. The RLS Foundation will advocate for the RLS community, to strengthen our core programs, increase awareness of restless legs syndrome, fund research, and continue our quest towards a cure. To everyone who has helped us get to where we are, we thank you!

RLS Foundation Earns Coveted 4-Star Rating from Charity Navigator

Austin, Texas, Dec. 22, 2017 – The RLS Foundation’s strong financial health and commitment to accountability and transparency have earned it a 4-star rating from Charity Navigator, America’s largest independent charity evaluator.

Since 2002, using objective analysis, Charity Navigator has awarded only the most fiscally responsible organizations a 4-star rating. In 2011, Charity Navigator added 17 metrics, focused on governance and ethical practices, as well as measures of openness, to its ratings methodology. These “Accountability & Transparency” metrics, which account for 50 percent of a charity’s overall rating, reveal which charities operate in accordance with industry best practices, and whether these organizations are open with their donors and stakeholders. In 2016, Charity Navigator enhanced its methodology to further substantiate the financial health of 4-star charities.

“The RLS Foundation’s exceptional 4-star rating sets it apart from its peers and demonstrates its trustworthiness to the public,” said Michael Thatcher, president and CEO of Charity Navigator. “Only a quarter of charities rated by Charity Navigator receive the distinction of our 4-star rating. This adds the RLS Foundation to a preeminent group of charities working to overcome our world’s most pressing challenges. Based on its 4-star rating, people can trust that their donations are going to a financially responsible and ethical charity when they decide to support the RLS Foundation.”

“We’re thrilled to achieve the 4-star rating from Charity Navigator,” said RLS Foundation Executive Director Karla Dzienkowski, RN, BSN. “This rating demonstrates our good governance and financial accountability, and assures our supporters that we are making wise use of their investment. Seventy six percent of the money donated to the RLS Foundation is used to fund research towards better treatments and a cure, to advocate for RLS victims, and to raise awareness about this very serious medical condition.”

The RLS Foundation’s rating and other information about charitable giving are available free of charge on www.charitynavigator.org. More detailed information is available to Charity Navigator site visitors who become registered users, another free service.

About the RLS Foundation

The RLS Foundation is dedicated to improving the lives of men, women and children who live with restless legs syndrome (RLS, also known as Willis-Ekbom disease). Founded in 1992, the Foundation’s goals are to increase awareness, improve treatments and through research, find a cure for RLS. The Foundation serves healthcare providers, researchers, nearly 5,000 members and an estimated 7 million individuals in the United States who have RLS. The RLS Foundation has awarded over $1.6 million to fund medical research on RLS causes and treatments. For more information or to become a member, visit www.rls.org.

About Charity Navigator

Charity Navigator is the largest charity evaluator in America, and its website attracts more visitors than all other charity rating groups combined. The organization helps guide intelligent giving by evaluating the Financial Health and Accountability & Transparency of more than 8,000 charities. Charity Navigator accepts no advertising or donations from the organizations it evaluates, ensuring unbiased evaluations; nor does it charge the public for this trusted data. As a result, Charity Navigator, a 501(c)(3) public charity itself, depends on support from individuals, corporations and foundations that believe it provides a much-needed service to America's charitable givers.

Karla Dzienkowski Celebrates Three Years at Foundation

This year Karla Dzienkowski, RN, BSN, celebrates her third year as executive director of the RLS Foundation. Since taking on the role, Karla has brought the Foundation into a new era, developing programs and nurturing relationships that make significant strides in spreading awareness, providing support, and finding a cure for RLS.

Karla first began her relationship with the Foundation in the early 2000s, becoming a member and supporter of the Foundation after her daughter was diagnosed with severe RLS. As soon as she finally heard the diagnosis, Karla set three goals for her daughter: 1) To become knowledgeable about the disease, 2) to learn how to manage her symptoms, and 3) to advocate for herself. Fortunately, the RLS Foundation provided information to get the help that she and her family needed. Even today as executive director, Karla has made it a personal goal to support children impacted by RLS, developing publications so that kids can better understand this disease and take charge of their symptoms.

Eventually, Karla served for six years as a member of the Foundation's Board of Directors. Karla spent several months in Rochester, Minnesota, the Foundation headquarters, to train and transfer knowledge from the retiring staff to the newly recruited staff. The new and old team packed up the office for relocation, and Karla and her husband then drove a moving truck over 1,000 miles to the Foundation's new home in Austin, Texas.

Karla is a registered nurse, and has extensive nonprofit and volunteer experience. In addition to her years on the Foundation's Board of Directors, Dzienkowski also served as board president of an Austin, Texas chapter of the National Charity League, Inc., a mother-daughter philanthropic organization committed to community service, leadership development and cultural experiences. Karla has a passion for cooking (keeping everyone at the Foundation office well-fed!) and is a dedicated Pittsburgh Steelers football fan and eternal optimist. She spent many years as a school nurse while her daughters were in school, but her role as mother and wife have always been her first priority. She works tirelessly for the Foundation because Karla is truly dedicated to its mission.

"Karla possesses an energy that radiates throughout the office and infects us all," Membership Coordinator Faith Duncan says. "She leads a trifecta of boards, constituents and staff, and does so with relative ease. One might find it difficult to manage business executives, renowned physicians, Foundation staff & RLS sufferers (each requiring a different 'touch'), but Karla quite competently wears many hats and accomplishes this like a true champ."

Karla's drive to find a cure, in addition to her personal experience with RLS, is what makes her a distinguished leader who inspires all she works with. She is selfless, consistently leading with extreme dedication and passion, and always puts her constituents first. When any person calls or writes in with stories of frustration, often at wit’s end, Karla takes the time to reach out to each individual, listen with sincere compassion, and assist them in outlining steps to a solution.

On behalf of the Foundation and the RLS community, we thank you Karla!

Awareness and Education

The RLS Foundation Surpasses Goals for the Year

Nearly 25 years ago, the Foundation began as a tiny group of dedicated individuals meeting around a kitchen table in Raleigh, North Carolina. We grew to become a bustling organization located in Austin, Texas, with an expansive network of nearly 5,000 dedicated members.

Since its inception, the Foundation has provided over $1.6 million in support of RLS research, and we are still the leading organization for science-based education and patient services for those suffering from RLS.

Just consider what we have accomplished over the past 12 months alone:

1. Certified five additional RLS Quality Care Centers

2. Reinvigorated our research grant program by committing to award up to eight new pilot grants totaling $200,000

3. Developed a teen guide and children’s booklet to help our youth manage the challenges of RLS

4. Created a multidisciplinary Scientific and Medical Advisory Board

5. Launched research into the economic impact of RLS and its treatment

6. Rolled out a far-reaching Year of Augmentation awareness and education program – distributing and promoting an augmentation white paper research summary to nearly 50,000 healthcare providers

The Foundation also created a support group leader "RLS and Augmentation" tool kit, and released our RLS and Augmentation video, which has already been watched by thousands.



The Foundation has also been active in educating the medical community this year by attending SLEEP, a joint meeting of the American Academy of Sleep Medicine and the Sleep Research Society, in Denver, Colorado. We were also present in November at the annual conference for the Society of Neuroscience in San Diego. Both events attract thousands of researchers and healthcare providers that are eager to learn more about RLS and other sleep disorders.


We are so proud of all we have accomplished this year on behalf of the RLS community, but we could not have done any of it without the generous donations given by both members and nonmembers alike. Together, we have hit incredible milestones - big achievements executed by a small staff and a network of dedicated volunteers.

To everyone who has helped us get to where we are, we thank you!

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.

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.

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."

Insufficient Sleep Cited as Public Health Problem

According to the Centers for Disease Control and Prevention (CDC), more than one third of adults in the United States fail to get a sufficient amount of sleep on a regular basis. In fact, many of these people are actually suffering from sleep disorders.

A sleep disorder is defined by any change in the way you normally sleep. Some of the more common examples include insomnia, sleep apnea, narcolepsy and restless legs syndrome (RLS) .

Symptoms of a sleep disorder involve irritability upon awakening and problems concentrating, and can lead to an overall decreased quality of life. Specifically, restless legs syndrome can prevent falling and staying asleep, resulting in unrefreshed sleep cycles and serious daytime fatigue.

Read the full article from Oklahoma Magazine here .

Top 10 Ways to Celebrate RLS Awareness Day:

1. Change your Facebook picture to our ‘RLS Awareness Day’ image (see RLS Foundation Facebook page) and tag us! You will be entered to win an RLS T-shirt and goodie bag! Win a Bravelet with the MOST LIKES on your post. 
2. Write a letter to the editor about your experience with RLS and send it to your local newspaper, TV station, or send it to us to post on our blog.
3. Tell your RLS story in video, photo or write a poem using the hashtags #RLSAwarenessDay2016 on Facebook, Twitter, Instagram or YouTube.
4. Order an RLS Bravelet for you or someone you care for and support! A portion of each Bravelet sold in support of RLS is donated to the RLSF! 
5. Become a Support Group Leader! Visit the volunteer page on our website or email Chiara at chiara@RLS.org for more information.
6. Everybody knows somebody with RLS. Download our postcard and send to four of your friends telling them about RLS Awareness Day, September 23, 2016 … the day the RLS community stands together with hope for a cure!
7. Download the RLS Quick Guide and share it in your community. Send it in emails. Post it at schools, places of worship, grocery stores, libraries, community centers and other public billboards. Bring it with you to appointments and leave copies in doctor's waiting areas – GET THE WORD OUT … YOU ARE NOT ALONE!
8. Gift or be gifted an RLS Foundation membership!  Give the gift of membership to a friend or family member (a $35 value). Or ask that a membership, or donation, to the Foundation be gifted to you for a special occasion, like your birthday! Membership includes our quarterly magazine, NightWalkers and access to the 'Members Only' section of our NEW website, where you can download any publication, access archived editions of NightWalkers and educational webinar archives.
   
9. Kids and teens have RLS too. Ask your school or sports league to announce RLS Awareness Day in morning announcements or during half-time! Be sure to share the RLS Teen Guide or Children's Booklet with your school nurse.
10. Purchase an RLS Awareness Ribbon magnet for your bumper.

A Guide to Navigating The RLS Foundation's Support Group Network

One of the most common questions we get at the Foundation is, "Where can I find support in my area?"

Across the U.S. and Canada, the RLS Foundation has a network of more than 75 individuals that serve as support volunteers for those suffering from RLS. Support group leaders organize meetings in their community to provide a safe haven for RLS sufferers to come together and share their stories, discuss coping strategies and learn about the latest treatments and information.

If there isn't a support group in your area, you can check to see if there is a contact nearby. Contacts are former group leaders who are available to offer support by phone or email to those in their area that are seeking RLS information, resources and support. They do not offer meetings but can assist in finding help where you live.

Another vital volunteer role with the RLS Foundation is our network of moderators who assist in managing the Foundation's discussion board. They are the virtual extension of our network that facilitates discussion and support regardless of your location or the time of day.

Check out the images below for a listing of our RLS Foundation volunteer family! You can also search for a support group or contact near you on our website.











We are always looking to expand our volunteer network, and to provide integral support and counsel to those in underserved areas. If you are interested in applying to become a support group leader, here are the steps:

1. Learn more about the role by viewing the support group leader description.  
2. Submit an application! 
3. The Foundation will send references a brief questionnaire.
4. Once reference questionnaires are returned, a volunteer manual is provided and a phone interview is scheduled.
5. You then plan your first meeting with the support from the Foundation!

Please send your completed application to:

Restless Legs Syndrome Foundation

Attn: Chiara Corey

3006 Bee Caves Road, Suite D206

Austin, Texas

78746

Or email Chiara@rls.org with your application form.

Our volunteer network is brimming with the enthusiasm of dedicated individuals - They continue to help The Foundation spread awareness and provide support to those facing RLS. Attend a support group meeting in your area or start one yourself! We want you to be a part of our team!