Friday, January 27, 2017

Our Role in Raising RLS Awareness

Be Visible, Be Heard

By Linda Secretan, RLS Foundation Board Member & Support Group Leader



An excerpt from the Summer 2016 edition of  NightWalkers, the Foundation's quarterly magazine.


SDRAB. In some ways an appropriately dreary acronym, but hidden within is sunny opportunity. As one of your RLS Foundation board members, I drew the lucky straw when the opportunity came around for one of us to serve on the Sleep Disorders Research Advisory Board (SDRAB) of the National Institutes of Health (NIH) last year. When Congress authorized the NIH to develop a Sleep Research Plan, it also provided that it be updated every five years. This is the year, and we, the RLS community, have a seat at the table.

A decade and a half ago, RLS Foundation Board of Directors members Bob Balkam and Bob Waterman (chair emeritus) stormed the doors of the NIH to create awareness about RLS. From this came the early conferences about sleep and sleep disorders and the recognition of RLS as a real concern affecting the lives of real people – like us, our children, our parents. Thanks to our two advocates, to successive RLS Foundation boards and to you, the scope of that early effort has grown, and we are still invited to participate in shaping the research to come.

Here I need to sort out any impression that I’m sharing scientific expertise with my brainy cohorts who are leaders in sleep research. The title I’ve privately given myself is “ordinary person on the board.” It’s exciting to hear what leading researchers and clinicians are up to, but it can be intimidating to step up, to speak and to contribute. When that happens, I remember the words: You are not alone.

Truly, I am not alone at that long conference table. All of you, over 4,000 [members] strong, are right behind me. I hear your frustrations, your questions, and your hope for better treatments and a cure ringing in my ears. I remember how positive action spirals upward. I remember that I am the voice for all of us in this larger community. That is the role for which I have a clear charter. I represent patients – the ones whose concerns are not visible even to physicians and may be ignored by the research community.

You know someone with asthma, don’t you? You may have heard the sound of wheezing and seen the effect of breathing disorders on an active life. Physicians are in the business of helping, fixing and making it better. With asthma, they can see, hear and understand what’s right in front of them, and manage it from a solid base of knowledge and training. With sleep disorders? Not so much.

Research helps because it quantifies. It supplies proofs. When a physician can consult research, he or she is on solid ground for then managing or unearthing a cure. But where is the link when the doctor can neither consult research nor see the symptoms, and has not been trained to look for the effects of sleep disorders – insomnia, fatigue, depression, job loss and diminished quality of life – or even to ask the questions? This missing link is what our contribution to SDRAB is all about.

On SDRAB, we are starting to draw together the many strands of this Sleep Disorders Research tapestry to create the 2016 Research Plan. What is the thread that runs through it all? Over and over again in the margins of my notes there is one word. Over and over I reach for the mic to speak the word again. Over, many times over, I play my broken record in our working group. You have guessed already. The word is awareness. Awareness is fundamental to our aims. If you start to unravel the fabric, you’ll have a hard time finding the beginning, so tightly is the need for awareness woven into the whole.

Without medical school training, physicians will continue to be blind to our disease. Without important research to back up the need, medical schools will not incorporate training. Without the prize of recognition that accompanies well-funded landmark studies, researchers will ignore opportunities to pursue the byways of sleep.

Without awareness of the impact of disordered sleep on lives, careers and families; of what one can contribute and who one can become, there will be no reason for deep-pocket sponsors to fund research. The NIH is a source of major funding, but underwrites only 10–15 percent of the proposals that come their way. To secure a portion of this funding, proposals for sleep research must ride in on rails of urgency.

As individuals, we give what we can through the RLS Foundation, providing crucial funds for studies that can grow to NIH stature. This generosity is a vital ingredient and has enabled big leaps in our understanding of RLS. But there is more: It is up to us to raise our voices wherever we are. We don’t usually think of ourselves as fist-raised, storm-the-barricades activists. Yet simply by being prepared to champion something we believe in and take action wherever we can, we will make strong that thread of awareness. We can assure that our voice is heard. You already have, you know. I applaud your efforts!

So many of you answered the urgent call to comment on the Request for Information from the NIH* that you jammed the NIH communication center with calls to report a faulty email link! Rarely does the public respond so well when invited to give input. Congress hears from only 4–5 percent of constituents – even with email and click-and-send forms. Be visible. Be heard. Even a small step, like sending a memo will help. And it will make you feel more alive, more enriched and happier. How can I be sure? There is research to support that!

*Editor’s note: In May 2016, the NIH sought public input on its Sleep Disorders Research Plan

Stay tuned for the Winter 2017 NightWalkers for advocacy tips from Linda!

Friday, January 20, 2017

Mass General Hospital Designated an RLS Quality Care Center

Massachusetts General Hospital

The 11th Addition to Our QCC Network


On Jan. 15 Massachusetts General Hospital was certified as an RLS Quality Care Center. Located in Boston, Massachusetts, Mass Gen is a nationally-ranked teaching hospital for Harvard Medical School, as well as a biomedical research facility. According to U.S. News & World Report, the hospital is among the highest in the country for 16 adult and five pediatric specialties.

This brand new Quality Care Center is staffed with four certified RLS healthcare providers:





John W. Winkelman (Director) MD, PhD
Kenneth C. Sassower, MD
Aleksander Videnovic, MD, MSc, FAAN, FAASM
Matt Bianchi, MD, PhD

To make an appointment with one of these physicians, contact Massachusetts General at 617-724-7426. All QCC contact information is also listed on our website.

The RLS Foundation offers a network of certified RLS Quality Care Centers across the country and in Europe. Centers are staffed by leading RLS specialists who provide expert care and specialized disease management. Through education, sharing of best practices and quality improvement projects, the Quality Care Center Network aims to improve the quality of healthcare for all people living with RLS.

These QCCs are renowned for outstanding performance in the field. To achieve certification, Centers undergo review by the RLS Foundation Scientific and Medical Advisory Board and must demonstrate a high level of expertise and experience treating the disease. These Centers:

    1. Are recognized as centers providing care to RLS patients by RLS experts
    2. Serve as information and referral resources for regional support groups and for healthcare providers who treat patients with RLS
    3. Promote understanding of the patient and family role in quality care improvement through educational offerings and literature
    4. Share information with other Centers to improve clinical best practices
    5. Partner with the RLS Foundation on quality improvement projects to raise the standard of care for RLS patients everywhere

Looking to join the network? Here’s how to apply.

Friday, January 13, 2017

Foundation Resources: Kids and RLS

"Growing Pains"

Signs and Symptoms of RLS in Children


At the Foundation, we often receive calls from people with restless legs syndrome who first identified their symptoms as young children. Many of them say their children and grandchildren are also plagued with this devastating disease.

An estimated 1.5 million children and adolescents in the United States are afflicted by RLS, yet many are not diagnosed until adulthood (if at all), their symptoms being attributed to "growing pains." In fact, roughly 35 percent of RLS sufferers report experiencing symptoms prior to the age of 20. One in ten report RLS during the first decade of life.*

It wasn't until 2007 that groundbreaking research partially funded by the RLS Foundation confirmed what so many had been wondering - RLS runs in families. Dr. David Rye confirmed this genetic component by discovering the first gene variant that contributed substantially to the risk for RLS. Today, PubMed lists over 40 articles discussing genetic risk factors for RLS.

Unfortunately, RLS is still not widely recognized. Oftentimes, these children are misdiagnosed with attention deficit hyperactivity disorder (ADHD), labeled as the “problem child” in the classroom or otherwise wrongly punished for a disease that is misunderstood.

Children are among the most vulnerable in society, and those with RLS need a support system that caters to their needs. The Foundation has resources available on our website for both kids and their parents, including the brand new children's booklet, The Adventures of Patty Pillow. This publication, geared towards children between the ages of 7 and 12, teaches kids how to cope with RLS, while not taking away from who they are and what they love.

Additionally, the Foundation has just released its newest publication, the Children & RLS brochure. This brochure provides critical information to healthcare providers concerning the treatment of RLS in kids, and has experts weigh in on RLS and Periodic Limb Movement Disorder in children and adolescents. This and other publications can be access in the Members Only section of our website.

For more information about RLS and your child, call 512-366-9109 or email us. You are not alone!

*Walters AS, Hickey K, Maltzman J et al. A questionnaire study of 138 patients with restless legs syndrome: the ‘Night-Walkers’ survey. Neurology 1996;46:92-5.

*Montplaisir J, Boucher S, Poirier G, Lavigne G, Lapierre O, Lesperance P. Clinical, polysomnographic, and genetic characteristics of restless legs syndrome: a study of 133 patients diagnosed with new standard criteria. Mov Disord 1997;12:61-5.

Monday, January 9, 2017

2016 Year-End Match

We Raised $30,000!

Donors Make Year-End Fundraising Goal Possible


In  2015 the RLS Foundation decided to allocate the final days of the year to a fundraising challenge - a dollar-for-dollar donation match. This year we surpassed our challenge, thanks to the generosity of our donors in their year-end giving.

A group of anonymous donors provided us with an incredible gift - a match of $15,000! Thus, all donations to the RLS Foundation from Dec. 28 through Jan. 1 were matched dollar-for-dollar up to that amount.

And how did we do? We received donations from 84 generous individuals , including $15,000 in matching funds, to raise a total of $33,125 in just five days!

The RLS Foundation is working to build greater public awareness and understanding about restless legs syndrome, to serve as a resource for people with RLS, and to fund medical research aimed at finding a cure. All proceeds from this unbelievable match will be put towards accomplishing our goals, and providing the RLS community support as the trusted source of information.

You make our success possible, and we couldn't be more grateful.

Thank you and happy new year!

Monday, January 2, 2017

Our New Support Group Leaders

Meet the New SGLs of 2016

The Foundation Welcomes Four Volunteers


At the heart of the RLS Foundation community is a network of volunteer support group leaders who give time, knowledge and a compassionate ear to others who struggle with RLS. Roughly 80 individuals across the U.S. and Canada provide support through face-to-face meetings, phone calls and the Foundation’s online discussion board.

The RLS Foundation is pleased to welcome four new support group leaders this past year! Read more about Karen, Charlotte, Bob and Sheila in their testimonials below. To all who volunteer with the Foundation, we thank you!

Shiela Richards (Ventura/San Fernando Valley, California)

What does “insidious onset” mean? Why am I having this excruciating pain within 5-15 minutes after I get into bed but I don’t have the pain during the day? Is this related to the plantar fasciitis that I have had for the past 6 years? The pain is keeping me up at night, I am walking the floors and stretching to get some relief from my pain which is a 15 on a 1-10 pain scale and I can’t remember my passwords at work because I am so exhausted!!! Oh yes, peanut butter has become my comfort food at 1:15 a.m.

This is where I was approximately 3 years ago when my symptoms of excruciating pain in my legs, sleepless nights, mood swings, exhaustion without being able to sleep and forgetfulness began. After trying to remedy the symptoms myself with over the counter meds and supplements, exercising more, then exercising less, I began searching for “a diagnosis” so that I could get “a cure or just relief”.

I started with my internist who did blood work, which led to an endocrinologist for Graves’ disease (Hyperthyroidism) which could cause leg pain. Blood work also showed low Ferritin (iron storage) and Hemoglobin which resulted in a visit to a gastroenterologist who ruled out internal bleeding and resulted in a nightly dose of iron. Next was a visit to a neurologist for an EMG to rule out any issues coming from my low back. Negative!!! Lastly, I was referred to Dr. Ronald Popper who is a Sleep Disorders Specialist in Thousand Oaks, Ca who understands RLS and has helped me tremendously with simple remedies so that I can sleep 7-8 hours/night, control my nighttime pain and regain my happiness and optimism.

My personal life was also being affected by this “insidious onset” of pain. My husband tried to be understanding and was concerned when the Ambien that I was taking was helping with the pain and sleep but was making me into a person that he didn’t know anymore. My mother thought I was exercising too much and not understanding that exercise had always been “my therapy” in the past. My social life was affected because I was too tired to make plans for any social get together beyond a few hours.

My husband refers to me as “the cheerleader” because I have a talent of offering a listening ear to others, coming up with a “plan” and helping to implement “the plan”. I felt that I was changing and I desperately needed “support” of my own. I contacted the RLS foundation to learn that there wasn’t a support group from Long Beach to Santa Barbara (approx. 97 miles). This is when I realized that if I need support, then there are other people within 97 miles that could benefit from a support group that understands the symptoms, can talk about them freely and can help each other with direction and eventually successes. After I was accepted by the RLS Foundation as a group support leader I connected with Caroline Chamales who is the group support leader in San Diego and attended her support group which met at Scripps in La Jolla. I walked out of the 1 ½ hour meeting feeling energized and hopeful.

Not only did I learn a tremendous amount about RLS presented by a neurologist and sleep disorders specialist but I met some extraordinary members of the population that suffer with RLS and some of their family and friends who came to show support. The experiences that I had for 3 years were nothing compared to those that had been suffering for possibly 10, 20, 30 and yes 40 years but were determined to find relief and eventually a cure for RLS.

I am thankful to Chiara at the RLS Foundation for giving me the opportunity to gather a group of people together who experience RLS with Medical professionals who understand the life changing symptoms and treatments for RLS. There was a reason that Caroline Chamales came into my life at the right time to share her positive experiences with the RLS Foundation and their outreach program.

Karen Rodier (Ashburn, Virginia)

I first attended a restless legs syndrome (RLS) support group about two years ago while living in Pennsylvania. I traveled over an hour each way to join the group to learn more about my disease. I was impressed with the other participants and the leader’s commitment. I decided then that I wanted to try to bring together people with RLS once we settled in Virginia.

Several months later in Virginia, two women attended the first support group meeting I held. Neither of these women had ever spoken with anyone else with RLS, despite having suffered with RLS for many years. During the meeting, we briefly discussed our RLS journeys, shared tips we had learned, and heard an educational program on augmentation developed by the Foundation.

The meeting was not about me, the person/leader, but about the group’s interest in people with RLS and the Foundation’s commitment to bringing individuals together so that no one feels alone. We are all trying to manage our conditions the best we can.

Meeting others with RLS is an important way to give ourselves the gift of time, talk with others and examine new strategies to try. As a restless legs syndrome support group leader, I don’t have all the answers, but I know whom to call and how to direct participants to the many written and online resources at the Foundation. My hope is to offer more support group meetings in my area so that individuals with restless legs syndrome will know, “You are not alone”!

Bob Harnett (Chicago, Illinois)

I had always had trouble falling asleep and every once in a while I would find myself tossing and turning trying to get comfortable in bed. However about five years ago my symptoms got much worse. My doctor suggested I take a sleep study, which I did and the results showed that I suffered from sleep apnea, insomnia and restless legs syndrome (RLS).

My reaction was WOW three strikes, and then I thought OK well what do I need to do to get cured? Like a lot of people I then found out how little is known about sleep disorders and that there are no cures. But there are ways to manage each of these aliments.

For me I find that my RLS symptoms are by far the worst impediment to falling asleep and the problem I worked on the most with my doctor to manage.

Since we live in the internet age I began searching for information related to RLS and that is when I came across the RLS Foundation website and began to learn more about RLS from a reputable source.

When first diagnosed I think people tend to think they are the only ones with a particular problem, so just knowing that there is a support group available is reassuring. I found that the RLS Foundation was providing useful information that was matching the information I was receiving from my doctor. Some of the information I was finding on the WEB was not as helpful.

I had seen in the NightWalkers newsletter that there were actual support groups that held meetings and provided information and support for those who suffer from RLS. Since I live in the Chicago metropolitan area I was surprised to find out that there was not a group anywhere near where I lived.

I had thought about volunteering to become a support group leader a few years ago, but then I got busy with other things and did not fill out the application, I guess I figured well someone else will do this. This year I found out that, “no one else” had started a group in my area, and I thought well why not me? I filled out the application, and met (via the phone) the staff at the RLS Foundation. I also contacted my doctor to get his input into the idea of starting a RLS support group.

Both the RLS foundation and my doctor’s office were enthusiastic about getting a group started in the Chicago area.

I have done so other volunteer work and I have always believed that volunteering is more about supporting the organizations goals and objectives and not being the star of the show. I’d much rather be the guy who supports the guy who’s the star and not the star myself. With that in mind I think of my role as the volunteer support group leader as the facilitator for the group. I can make so calls, setup a room, set out pamphlets, and let people know about the resources available through the RLS Foundation’s website.

Charlotte Slack (Austin, Texas)

My husband has suffered from RLS since he was a child. Our daughter also has RLS, and I very much want to help them and others in dealing with this insidious disease. I can’t say how many times we have stopped on the side of the road while one or both of them had to get out to walk around. NightWalkers is the perfect name for the RLS Foundation newsletter, as that’s what many RLS sufferers do. Sometimes my husband walks more than he sleeps.

A support group is like any other gathering of people with common interests. People gather for book clubs, exercise classes, bridge, wine collecting, politics, etc. For people with restless legs syndrome, a support group offers the opportunity to be with others who share this disease. Knowing we’re not alone can be amazingly uplifting. We’ll hopefully share common issues and learn what remedies work or don’t work. Our family has been part of support groups for two other diseases, and we know how valuable they are to our spirits.

As a child, my husband’s parents took him to the doctor about the pains in his legs. The doctor said they were “growing pains” and he would be fine. He never was. Some years ago, he was driving while listening to a call-in show on the radio. He wasn’t paying much attention to the show until he heard the words “restless legs syndrome.” He nearly wrecked. For the first time, he knew that his condition had a name and that others had the same thing. He saw his doctor, who did believe him and referred him to a neurologist.

Managing RLS is a constant balancing act, but simply knowing he has a recognized disease gives him hope. The Restless Legs Syndrome Foundation is our go-to source for reliable information. That’s how we learned about support groups!

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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.