LASER FOCUSED TO FINDA CURE - RLS · PDF fileLASER FOCUSED TO FINDA CURE ... Brian B. Koo, MD...

LASER FOCUSEDTO FIND A CURE

2016 ANNUAL REPORTRLS Foundation Fiscal Year October 1, 2015 to September 30, 2016

RLS ANNUAL REPORT 3 10 17_Layout 1 3/10/17 2:19 PM

Restless Legs Syndrome Foundation, Inc. is dedicated to improving the lives of the men, women andchildren who live with this often devastating disease. The organization’s goals are to increase awareness, toimprove treatments and, through research, to find a cure for RLS.

www.rls.org

The Restless Legs Syndrome Foundation Boardof Directors held meetings on:

Board of Directors

Lewis Phelps, Chair and Acting TreasurerPasadena, CA

Linda Secretan, SecretaryEagle, ID

Michael Brownstein, MD, PhDRockville, MD

Joseph Martin, MD, PhDBoston, MA

John T. McDevitt, PhDNew York, NY

Starla PhelpsAlexandria, VA

Michael J. Zigmond, PhDPittsburgh, PA

Robert (Bob) Waterman, Jr., Chair EmeritusHillsborough, CA

Michael Aschner, PhDBronx, NY

Philip Becker, MDDallas, TX

Marie-Françoise Chesselet, MD, PhDLos Angeles, CA

Stefan Clemens, PhD, HdRGreenville, NC

James R. Connor, PhDHershey, PA

Jeffery S. Durmer, MD, PhDJohns Creek, GA

Christopher J. Earley, MB, BCh, PhD, FRCPIBaltimore, MD

Sergi Ferré, MD, PhDBaltimore, MD

Jennifer G. Hensley, EdD, CNM, WHNPNashville, TN

Byron C. Jones, PhDMemphis, TN

Brian B. Koo, MDWest Haven, CT

Mauro Manconi, MD, PhDLugano, Switzerland

Mark P. Mattson, PhDBaltimore, MD

Emmanuel Mignot, MD, PhDPalo Alto, CA

William Ondo, MD Houston, TX

Michael H. Silber, MB, ChBRochester, MN

Lynn Marie Trotti, MD, MScAtlanta, GA

George Uhl, MD, PhDAlbuquerque, NM

Arthur S. Walters, MDNashville, TN

John W. Winkelman, MD, PhDBoston, MA

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November 6–8, 2015Annual Meeting

December 11, 2015Telephonic Meeting

March 3, 2016Telephonic Meeting

July 19, 2016Telephonic Meeting

September 23–25, 2016Annual Meeting

2016 RLS Foundation Scientific and Medical Advisory Board


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The last year has been dramatic and pivotal in the 25-year history of the RLS Foundation.

We have much of which to be proud. After a steep decline in funding frompharmaceutical companies in recent years, we have rebuilt a strong financial foundationthrough a systematic fundraising campaign reaching out to new audiences affected bythe disease. This campaign has drawn thousands of new members and supporters towork together in finding treatments and a cure for RLS.

Based on our renewed financial strength and management of the Foundation that isfocused on efficient use of our donors’ gifts, we have assembled an extraordinarilycapable, dedicated team of employees at our headquarters in Austin, Texas. Yoursupport has enabled us to plan on tripling the funding we provide for researchers. Wehave established a new combined Scientific and Medical Advisory Board to recruitoutstanding researchers who will focus on the complexity of RLS issues in their work,provide guidance to them, and help move new medications quickly from the researchbench into the hands of physicians who treat patients with RLS.

We also are blessed to have a dedicated group of volunteers who serve on our Board ofDirectors, several specialized committees, the Scientific and Medical Advisory Board,and as leaders of dozens of Support Groups around the country.

Underlying every success over the past year has been the willingness of each of you whohave donated money to help keep the good work of the organization going forward andto fund greater research. From individuals who support us with their annualmembership fee to generous individuals and foundations who commit major gifts, it allmakes a difference. To each supporter, Thank You! From the bottom of my heart,Thank You!

As happy as I am about what the RLS Foundation has achieved in the last year, I lookahead at how much remains yet to be done. Our challenges include grappling with thegrowing threat of restrictions on use of low dose opioids to treat refractory cases of RLS,finding new and durable treatments for this disease, finding its cause so that we cancreate a cure, and educating healthcare providers as well as a wide swath of theAmerican public about the immeasurable damage to quality of life caused by restlesslegs syndrome.

The challenges are great, but so are our opportunities. We just have to keep striving. AsBenjamin Franklin said, “There will be sleeping enough in the grave.”

Lew PhelpsChair, RLS Foundation Board of Directors

Lewis PhelpsChair, RLS FoundationBoard of Directors

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2016 Highlights I From the Chairman of the Board


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As newly elected chair of the RLS Foundation Board of Directors,I want to report on some exciting and significant changes adoptedunanimously by the Board at a recent meeting in our headquarterscity of Austin, Texas.

We have set forth a reinvigorated strategy for the RLS FoundationResearch Grant Program that will drive RLS research forwardrather than waiting for opportunities to be presented to us. eBoard has committed the Foundation to a significantly higher levelof annual funding in support of research – both basic and clinical –to get to the root of this disease, develop treatments and find acure. e RLS Foundation will provide at least $200,000 inresearch pilot grants in 2016 (almost triple our historical average)and up to eight research projects (versus one to three previously).

Our goal is simple: we want to find a cure for this loathsomedisease. By multiplying our commitment to research funding, wehope to accelerate that outcome.

e reinvigorated strategy for the Research Grant Programincludes:

• Identify potential research projects and reaching out to researchers who could help move us toward our goal of eradicating RLS

• Increase research funding to $200,000 annually for up to eight pilot grants, through additional donations to the Research Grant Program from individual donors

• Review and approve grants on a continual basis, rather than just once a year, using the same rigorous review process currently used to evaluate grant proposals

• Provide counsel to RLS Foundation grant seekers to improve the strength and outcomes of their research studies

• Identify potential sources of later-stage funding (from the National Institutes of Health (NIH), for example) for research that the Foundation has sponsored in initial phases

• Expand our reach to biotech and medical technology companies as collaborators that can help us achieve progress toward a cure

• Fund a study of the health burden of RLS – the direct yearly cost of caring for people with the problem and the indirect cost of lost time and work – for leverage when lobbying the NIH and Department of Defense to step up governmental funding for RLS research

In addition, we aim to have asignificant presence at professionalscientific meetings. As a first step, wewill have a booth in the exhibitionarea of the Society for Neuroscienceannual meeting (November 12–15in San Diego). For that event wehave proposed a symposium on RLSfeaturing leading basic and clinicalresearchers.

e Board’s strategic planningdiscussions leading to these changesmade it clear that our existingstructure of separate Medical and Scientific Advisory Boards is notthe best way to manage an expanded, accelerated research process.

e Board agreed to create a wholly new entity – the RLSFoundation Scientific and Medical Advisory Board – to bringtogether, in a single body, talent from the spectrum of institutionsand disciplines that may advance our mission. Issues such ashealthcare economics, public health policy, and epidemiology maywell inform the new Advisory Board’s agenda.

We will use the pool of expertise we’re assembling on the newAdvisory Board to provide assistance in all elements of ourreinvigorated research grant program, including the identificationof potential donors to support our amplified funding effort. Wewill announce our new roster of Advisory Board members soonand hope to include members from the world of biotech andmedical technology companies, as well as large and smallpharmaceutical businesses.

e RLS Foundation has always had three major goals: to raiseawareness and educate people about the disease, improvetreatments, and through research, find a cure for RLS. Withoutdiminishing our commitment to the first two goals, our newresearch initiative greatly increases our ability to find a cure.

Your generous financial support is more crucial than ever. Pleasejoin us in making it possible to find a cure.

To make a donation to the RLS Foundation Research GrantProgram, visit www.rls.org or call 512-366-9109.

www.rls.org

2016 Highlights I Find a Cure

RLS Foundation Launches Reinvigorated ResearchGrant ProgramBy Lewis Phelps, Chair, RLS Foundation Board of Directors

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Lewis Phelps


Restless legs syndrome (RLS) affects at least 7 to 8 percent of theworldwide population and, as readers of NightWalkers know all toowell, it can be a devastating condition. Although it was firstdescribed almost 350 years ago, we still do not know enough aboutits cause to develop sufficiently effective treatments, let alone toprovide a cure. These objectives are impeded by a critical lack ofknowledge, which must come from a combination of basic,translational and clinical research.

Basic research can provide us with a better understanding of thecellular and molecular processes that occur within the brain areasthought to be responsible for the symptoms of RLS, as well as thereasons that traditional drug treatments so often lead toaugmentation – an actual worsening of the symptoms over time.Translational research applies that knowledge to examine how wemight intervene to treat the disorder in realistic animal models ofRLS. And clinical research is needed before any prospectivetreatment can be approved for human use.

How does a researcher go about tackling the complex problem ofdeveloping treatments for a clinical disorder such as RLS?

First, the researcher must learn what is already known. Thisinvolves reading scientific papers and talking to other researchers inthe field, often at scientific meetings or during visits to otherlaboratories. The latter step is critically important, as publishedresearch may be as much as two years behind what is currentlybeing done in the lab.

Second, a researcher must develop a hypothesis (theory)concerning the cause or treatment of the condition.

Third, he or she must develop an approach for testing thathypothesis. This usually involves having the necessary space,methods, equipment and staff. Often it also involves assembling ateam that includes collaborators at other institutions, includingboth universities and private institutions such as biotechcompanies.

Fourth, the researcher needs money. The researcher will start witha small pilot study to see if a hypothesis is feasible or to obtainpreliminary data validating the research methods. This might cost$50,000 or $100,000. Currently, the RLS Foundation is the onlyorganization set up to consider such grants. And those funds arejust for a preliminary study; full-scale basic or translational studiescan easily cost $250,000 a year or more for up to five years – andclinical studies cost much more.

Fifth, the research must be completed, the data carefully analyzed,and the paper written and published so that others can join in the

task at hand.

There are quitea few researcherswho could beinvestigatingRLS. They havethe necessaryexpertise, space,methods,equipment andstaff. What most lack, however, is an awareness of the disease andthe money needed to conduct the research.

The RLS Foundation recognizes these issues as barriers toadvancement and has launched a reinvigorated strategy for theResearch Grant Program (see page 3) that will impact the researcheffort in important ways:

1. The strategy includes a stepped-up program to educate researchers about RLS and the urgent need for more research. The Foundation will actively seek out investigators with potential to work on the problems and encourage them to pursue paths that may lead to new treatments.

2. The strategy greatly expands the Foundation’s pilot grants for research on RLS. Currently, most funding for biomedical research in the U.S. is provided by federal agencies such as the National Institutes of Health (NIH).To get those large grants, pilot data showing support for an idea is essential. Thus, pilot grants from the RLS Foundation not only promote research on the disorder, but also position researchers to attract even more funding for RLS from other sources.

You can help, too. You can make an extra contribution to the RLSFoundation Research Grant Program this year. And you can write toyour legislators urging them to increase funding for the research thatwill ultimately alleviate the suffering that RLS causes to so many.

About Michael Zigmond and Beth FischerMichael Zigmond is a researcher in neuroscience and amember of the RLS Foundation Board of Directors; BethFischer is an educator and a person living with RLS. Bothcan be found at the University of Pittsburgh.


Research on RLS: How We Are Tackling ThisComplex ChallengeBy Michael J. Zigmond, PhD, and Beth A. Fischer, PhD

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Beth A. Fischer, PhDMichael J. Zigmond, PhD


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e 2015 RLS/WED Science Summit was an excitinggathering of scientists who have a passion for understandingwhy RLS happens and how we might be able to improvefuture treatment, and who share a common goal of workingtoward an RLS cure. In the highlights below, I discuss someof the science presented in the meeting. Due to spacelimitations, and the impressive breadth and depth of RLSresearch presented at the three-day summit, not all aspects ofongoing RLS research can be covered here.

What Causes RLS?A key question in our understanding of RLS revolves aroundwhat causes this disease to occur. A number of different linesof exploration are ongoing, focusing on dopamine, brain irondeficiency, spinal cord functioning, the opiate (pain-relieving)system and genetics.

Considering the latter, RLS has long been known to run infamilies and have a genetic predisposition, but ourunderstanding of the specific genes at play in the developmentof RLS has only recently expanded in the last decade. Startingin 2007, genome-wide association studies have identified sixdifferent genetic regions that contain variants within singlenucleotides (adenine (A), cytosine (C), thymine (T) andguanine (G) – the building blocks of DNA) that tend to bedifferent between people who have RLS and controls withoutRLS. None of these six genetic regions by themselves accountfor all RLS, but each individual’s combination of genevariants helps to determine whether or not a person willdevelop RLS (with some environmental influences also at work).

When the six genetic regions were initially found to beassociated with RLS, the ways in which they might cause RLSwere not at all clear. However, these regions (or very closelyrelated genes) are also present in many animals. eirpresence has allowed RLS researchers to take what is knownabout human RLS genetics and use it to develop animalmodels of RLS.

Some of the genes identified in humans have now beenmanipulated in flies, worms and mice. Specifically, scientistshave manipulated the gene BTBD9 in rodents and flies,PTPRD in flies, and MEIS1 in worms and rodents. Ofcourse, these animals cannot describe urges to move their legsat night, but careful studies of affected animal behavior versusunaffected animal behavior demonstrates differences in motoractivity, reactions to sensory stimuli, and rest/sleep patterns,

all of which are reminiscent ofRLS in humans. (For anexample, see “Using BTBD9to Simulate RLS in Fruit Flies”on page 9.)

ese animal models not onlyhave been helpful in providingevidence that the genes have acausal relationship to RLS, butalso have providedinvestigators with models thatwill allow more detailedinvestigations of how the genesinteract with other systemsthat have been implicated inRLS. Animal models, whether genetic or otherwise (forexample, animal models of iron deficiency), may also proveuseful in RLS drug development in the future.

While these advances in RLS genetics are undeniably helpful, it isalso clear that the six identified regions do not explain all, or evennearly all, of the genetic contribution of RLS. Other geneticvariants, rare or common, await identification to enhance ourunderstanding of RLS. (See “How much of RLS does thisexplain?” below.)

How Much of RLS Does This Explain?

Please note: is pie chart is an estimate for the purpose of illustration, not aprecise comparison.

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Study Finds More White Matter Lesions in Patientswith Late-Onset versus Early-Onset RLS

Lynn Marie Trotti, MD, MSc

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Relationship with Cardiovascular DiseaseOne of the most pressing clinical questions about RLS is how itis associated with cardiovascular disease such as heart disease,stroke and high blood pressure.

Multiple studies have evaluated for associations betweencardiovascular disease and RLS or periodic limb movements ofsleep (PLMS). e results of these studies have been mixed, withmany suggesting a relationship between having RLS (or PLMS)and having cardiovascular disease, but some other large, carefullycontrolled studies suggest that there is no such relationship.Separate from studies that address the relationship at one point intime, studies designed to assess RLS (or PLMS) at an initial timepoint and then the subsequent development of cardiovasculardisease at a later point have also been completed, but have hadsimilarly mixed results.

Some studies have even suggested that having multiple diseases (including cardiovascular disease), so-called multimorbidity, mightpredict RLS. While epidemiologic studies such as these can behelpful in identifying potential relationships, they cannot trulyresolve questions of cause and effect. Studies that are moremechanistic are needed – that is, those looking at potential wayswhereby RLS or PLMS could cause cardiovascular disease (or theopposite) – to more firmly establish biological plausibility for suchan effect.

In sleep apnea, another sleep disorder that disrupts nighttimesleep, there is a more firmly established link between apnea andcardiovascular disease. e relationship between apnea andcardiovascular disease is thought to be mediated by severaldifferent mechanisms, some of which theoretically could bepresent in people with RLS. ese include: low oxygen (notpresent in RLS); changes in pressure in the chest (not present inRLS); impaired function of blood vessels, especially theendothelial lining (unknown in RLS patients, but known to beaffected by sleep deprivation); stiffness of the aorta (unknown inRLS patients, but known to be affected by sleep deprivation);abnormal stress hormone system activation (possibly affected inRLS; sometimes implicated in obstructive sleep apnea (OSA));and abnormal regulation of blood pressure-related hormonesrenin and angiotensin (unknown in RLS; impaired in sleepdeprivation and possibly in OSA).

Much interest exists in evaluating these mechanisms in RLSpatients to help untangle the relationship between RLS andcardiovascular disease. Importantly, at this point in time we do

not know if treating RLS or PLMS has an impact on long-termrisk of cardiovascular disease, and treatment decisions are stillindividualized based on symptoms.

Treatment of RLSTreatment decisions for RLS are supported by a number of well-performed, large, randomized, placebo-controlled trials; that is,we have a number of treatments that we know are effective forRLS. However, deciding between different treatment options canpose more of a challenge, because trials directly comparing twomedications (rather than comparing one medication to aplacebo) are less commonly performed.

is being said, a recent study by Richard P. Allen, PhD, andcolleagues (published in e New England Journal of Medicine in2014) compared two commonly used treatments, pramipexole (adopamine agonist) and pregabalin (an alpha-2-delta ligand, notapproved by the U.S. Food and Drug Administration (FDA) forthe treatment of RLS). Both medications worked well to controlsymptoms. However, augmentation (the worsening of RLSsymptoms provoked by medication) was less common withpregabalin. is has led to the suggestion by the InternationalRestless Legs Syndrome Study Group (IRLSSG) that alpha-2-delta ligands (gabapentin, gabapentin enacarbil and pregabalin)be considered as first-line treatment for RLS when possible, butwith the caveat that because the two classes of medications havequite different side effects, treatment must still be individualized.Gabapentin enacarbil (Horizant) is the only alpha-2-delta ligandthat is FDA approved for the treatment of RLS.

[See Guidelines for the first-line treatment of restless legs syndrome/Willis-Ekbom disease, prevention and treatment of dopaminergic augmentation:a combined task force of the IRLSSG, EURLSSG, and theRLS-foundation on www.ncbi.nlm.nih.gov/pubmed/27448465]

Intravenous iron may also be considered in the treatment ofRLS, especially in patients with low blood levels of iron whocannot take or do not respond to oral iron replacement. Placebo-controlled studies of intravenous iron have been performed usingtwo different kinds of iron, one that was shown to be helpful(ferric carboxymaltose) and one that was shown not to be helpful(iron sucrose). RLS researchers have proposed that this differencereflects two factors: 1) iron sucrose has a shorter half-life,meaning it may be less available during the time the brain isabsorbing iron; and 2) macrophages (cells involved in the processof getting iron into the brain tissues that need it) appear to react

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differently to iron sucrose than to ferric carboxymaltose.erefore, use of intravenous iron may not be sufficient; aparticular formulation of iron may be needed for RLS patientsusing this kind of therapy.

Steps Toward Better RLS Treatments It is always a long road from finding a scientific discovery toadvancing it into clinical practice, but basic science is the firststep. It is encouraging to see all of the RLS research underwayand people in the scientific community who are working tounderstand RLS. Our hope is that we will someday be able totranslate what we are learning through basic science intotreatments that will help improve quality of life for peoplewith RLS.

About Lynn Marie TrottiLynn Marie Trotti, MD, MSc, is an associate professorof neurology at Emory Sleep Center, Emory UniversitySchool of Medicine. Dr. Trotti is an RLS FoundationAdvisory Board member and director of the Emory RLSQuality Care Center.

Using BTBD9 to Simulate RLSin Fruit FliesA number of research teams are using genetic manipulationto develop animal models of RLS. While animals can’tdescribe RLS-like sensations in their limbs, researchers canobserve movements. In one example, scientists geneticallymanipulated the BTBD9 gene in drosophila (fruit flies) andtracked how the flies moved over time. e normal fliesmoved back and forth somewhat, but those with theBTBD9 gene manipulated to simulate RLS moved arounda lot more, in a nonlinear way (Freeman, A, Current Biology,2012).


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Foundation Funds Study on Cost-Effectiveness ofRLS Treatment

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The RLS Foundation has awarded a $36,750 grant toWilliam Padula, an assistant professor at Johns HopkinsBloomberg School of Public Health, for research to perform acost-effectiveness analysis on treating patients with RLS.

This study is the first to provide a comprehensive evaluationof the cost of RLS treatment in the U.S. The analysis coversthe period beginning when patients first seek medical help forRLS symptoms and includes costs related to loss of work andtime, in addition to medical expenses.

In research that began in February 2016, Padula’s team hasconducted a systematic review of published studies on RLSmisdiagnosis rates and found that RLS is misdiagnosed about90 percent of the time, primarily as one of four conditions:Parkinson’s disease (PD), sleep disorder, attention deficithyperactivity disorder (ADHD) or depression.

“Medical care surrounding RLS is so poorright now – not because we have poordoctors, but because we don’t train them.”* The researchers have created a structural decision model fortreatment that captures the often multiple attempts to gain aproper diagnosis. For example, a patient who is misdiagnosedwith ADHD may take medications that actually worsen RLSsymptoms, and subsequently be misdiagnosed with PD. Theperiod of misdiagnosis commonly persists for years, taking asignificant toll on sleep and quality of life.

“If we invest money wisely in treating people, it improveseither their quality of life or the duration of their lifeexpectancy,” says Padula. “We are trying to show that it doesboth, and that you get a lot of value out of the money spentin treating RLS.”

Findings from the study will strengthen the case for increasedphysician training. “Medical care surrounding RLS is so poorright now – not because we have poor doctors, but becausewe don’t train them,” says Padula. “Doctors in primary caremedicine are the gatekeepers referring patients to neurologistsand need to be able to diagnose RLS correctly.”

The study will report the cost of intervening to educatephysicians, relative to quality-adjusted life years (QALYs),

where one QALY equates to oneyear in perfect health added to anindividual’s lifespan as the resultof this intervention.

Preliminary results indicate itwould be very cost-effective toincrease physician education onRLS, according to Padula,especially if this training can beintegrated into the existingtraining period of internalmedicine residency. Data fromthe study will potentially be usedto lobby for the American Medical Association to take suchaction.

Findings will also support the case for greater researchfunding from agencies such as the National Institutes ofHealth (NIH) and the United States Department of Defense(DOD).

“Investing something in this research now could make it moreimportant on a national scale in the future. People willrecognize it better, and the return on investment foraddressing it,” says Padula.

About William PadulaWilliam V. Padula, PhD, is an assistant professor of healthpolicy and management at the Johns Hopkins BloombergSchool of Public Health. His research explores problems inhealth economics and health services research with a focus onthe theoretical foundations of medical cost-effectivenessanalysis and the cost and quality improvement of hospital care.

* Editor’s note: This is factual. In medical school, doctors are nottrained to recognize and treat RLS. Education and awarenesscontinue to be two areas of focus for the RLS Foundation. To thisend, the Foundation has executed an education and awarenessprogram targeted at physicians practicing in primary care,pulmonary medicine, sleep medicine, and neurology through adirect-mail campaign of educational materials about RLS, aswell as the prevention and treatment of augmentation.

William V. Padula, PhD


Many persons with RLS ask about the use of magnesium (Mg)to help with symptoms. While research in this area is scant,magnesium can certainly affect other health conditions, therebyaffecting RLS symptoms.

What is magnesium?Magnesium is an element found throughout the body in blood,bones and soft tissues. Magnesium works with over 300 enzymesthat regulate protein synthesis, muscle and nerve function, bloodglucose control and blood pressure. It plays an important role inhydration, muscle relaxation, energy production and, crucially, thedeactivation of adrenaline. In addition, magnesium plays a role inthe transport of calcium and potassium across cell membranes,which is imperative in nerve impulse conduction, musclecontraction and normal heart conduction.

What are the symptoms of low magnesium?Deficiency of magnesium can cause a variety of health issues. Earlysigns may include loss of appetite, nausea, vomiting, fatigue orweakness. As hypomagnesemia (low magnesium levels in the blood)worsens, signs include numbness, tingling, muscle twitching,cramps and muscle soreness. More serious symptoms includeabnormal heart rhythms, coronary spasms (remember, the heart is amuscle) and seizures. Magnesium has a direct effect on calcium andpotassium levels, so people who take magnesium should have theseelectrolytes monitored by a healthcare provider through blood testing.

Low magnesium can result from a variety of causes, includingchronic diseases, medication use, poor nutrition, lifestyle choicesand pregnancy. Older adults are at added risk because of decreasedabsorption of magnesium with age and renal insufficiency.

How does magnesium affect sleep?Magnesium is essential for every stage of sleep because of itsneuroprotective effect of slowing the metabolic process, loweringbrain temperature, and regulating hormones responsible for sleeponset. Magnesium is also known to cause muscular relaxation,which may help with falling asleep.

There are two hormones that are affected by magnesium levels:cortisol (known as the stress hormone) and melatonin (which helpsregulate sleep patterns). Magnesium has been reported to decreasecortisol, thereby promoting relaxation and sleep. Magnesium is vitalfor the function of gamma aminobutyric acid (GABA) receptors inthe brain, which initiate sleep. Sufficient magnesium is required toregulate all hormones in the body. With age, the natural decline ofthese hormones worsens if there is not enough magnesium.

Where can I find magnesium?You can find magnesium in foods, some bottled water, dietarysupplements and medications (antacids and laxatives). Green leafy

vegetables, cereals and fortified foodsare good sources of magnesium.Foods containing fiber usually havesome magnesium. Keep in mindthat food processing removesmagnesium.

Many foods drain the body ofmagnesium and should be avoided,especially by people who have lowmagnesium levels. These foodsinclude carbonated beverages, sugar,high-carb foods, caffeine andalcohol. Also, some medications willdeplete the body of magnesiumincluding diuretics, cardiacmedications, asthma medications, birth control medications andestrogen. Calcium and magnesium have an inverse relationship, soif you take calcium supplements, then your magnesium level couldbe low.

An interesting study was published in 2015 on balneotherapy in olderadults. Balneotherapy is the use of mineral water baths to improvehealth and is usually practiced at spas. After a 12-day balneotherapyprogram, 52 older adults from Spain showed significant improvementin sleep, mood and depression. The water at Balneario San Andréswas hypothermic (at or above 20 C, or 60 F) hard water of mediummineralization with bicarbonate, sulfate, sodium and magnesium asthe dominant ions (Latorre-Román et al., 2015).

How much magnesium should I take?The recommended dietary allowance (RDA) for magnesium variesby age. Dosing also depends on gender and whether a person ispregnant or breastfeeding. For adults, 400 mg daily is usually safe. Ifyou are using magnesium to help with sleep, you may want to takethis before bedtime. For some people, magnesium may bestimulating rather than calming. In this case, you should takemagnesium in the morning.

Magnesium can be purchased over the counter. Make sure yourhealthcare provider knows you are taking magnesium, as it mayaffect other medications you take. If you take magnesiumsupplements, you should have your magnesium level checkedroutinely through blood tests. Magnesium can have significantimpact on health outcomes and should be carefully monitored.

ReferencesLatorre-Román PÁ, Rentero-Blanco M, Laredo-Aguilera JA, García-Pinillos F.2015. “Effect of a 12-day balneotherapy programme on pain, mood, sleep, anddepression in healthy elderly people.” Psychogeriatrics (15): 14–19.

Magnesium Fact Sheet: ods.od.nih.gov/factsheets/Magnesium-Consumer

2016 Highlights I Improve Treatments

Managing Your MagnesiumBy Norma G. Cuellar, PhD, RN, FAAN

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Norma G. Cuellar, PhD, RN, FAANProfessor, Capstone College ofNursing, University of Alabama


RLS Quality Care Centers serve as destinations for anyone withRLS who needs expert care, as well as resources for regionalproviders and support groups.

To achieve certification, providers must meet rigorous criteria fortreating patients with a range of RLS complexity andcomorbidities. Each center must provide ongoing treatment to atleast 200 patients with RLS, and each certified specialist mustmanage at least 50 RLS patients. Centers are also required todemonstrate that they have managed at least six patients withmultiple co-existing medical conditions and/or medicationmanagement issues related to RLS.

Visit www.rls.org/treatment/quality-care-centers to learn moreabout RLS Quality Care Centers.

Scripps Clinic Viterbi Family Sleep Center10666 North Torrey Pines Rd. La Jolla CA 92037858-554-8845www.scripps.org/medical-groups/scripps-clinic/services/sleep-medicine

Certified healthcare providers:J. Steven Poceta, MD (Director)Lawrence Edward Kline, MDJohn W. Cronin, MD

“At Scripps Clinic, we are honored to be recognized as an RLSQuality Care Center. This designation is not about us, however– it is about increasing awareness of RLS for people who areundiagnosed and about trying to improve the lives of patientswho have RLS. We hope that this RLS Quality Care Centerdesignation is the beginning of more research and bettertreatment of patients.”

– J. Steven Poceta, MDDirector of the RLS Quality Care Center at Scripps

Sleep Center, Neurocenter of Southern Switzerland,Civic Hospital of LuganoVia Tesserete 46 • Lugano, Switzerland 6900 +41 (0)91 811-6825www.eoc.ch/Centri-specialistici/Neurocentro-della-Svizzera-Italiana/Neurologia/Centro-sonno-ed-epilessia

Certified healthcare providers: Mauro Manconi, MD, PhD (Director)Sylvia Miano, MD, PhDStephany Fulda, PhDPietro-Luca Ratti, MD, PhD

“As the second RLS Quality Care Center based in Europe,improved quality and accessibility to expert care will result inimproved quality of life for RLS patients living in the EuropeanCommunity.”

– Mauro Manconi, MD, PhDDirector of the RLS Quality Care Center in Lugano, Switzerland

Vanderbilt University Medical CenterVanderbilt Sleep Center2105 Edwards Curd LaneFranklin, TN 37067

Vanderbilt Neurology One Hundred Oaks719 Thompson Lane, Suite 24100Nashville, TN 37204615-936-0060www.vanderbilthealth.com/sleepcenter

Certified healthcare providers:Arthur Scott Walters, MD (QCC Director)Kanika Bagai, MSCI, MDJennifer Hensley, EdD, CNM, WHNP, LCCEBeth Ann Malow, MS, MDAthlea Robinson-Shelton, MDRaghu Pishka Upender, MD

“We are pleased that Vanderbilt University Medical Center has beencertified as a Quality Care Center for the treatment of RLS. Weappreciate very much this honor and will do our best to live up to thisdistinction and provide adults, children and adolescents with the verybest care possible.”

– Dr. Arthur S. WaltersDirector of the RLS Quality Care Center at Vanderbilt


Foundation Certifies Three RLS Quality Care Centers


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2016 Highlights I Increase Awareness

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The RLS Foundation wants every person who has RLS to knowabout augmentation, a serious side effect of some dopaminemedications.

In February, the Foundation published the video RLS andAugmentation, available on the Foundation’s YouTube channel. The20-minute video includes personal accounts by patients andinterviews with medical experts at certified RLS Quality CareCenters.

For example, Foundation member and volunteer Donnie Keecontrolled his RLS symptoms for 15 years by taking a dopaminemedication. This changed suddenly one day, says Kee, when “the RLSjust went into overdrive.” His symptoms started happening earlier inthe day and became so severe that he couldn’t function at his job.

Kee was experiencing augmentation, a serious but reversible drug sideeffect. RLS Foundation Executive Director Karla Dzienkowski says,“Physicians who treat RLS patients need to screen for augmentationat every office visit. Patients need to be watchful for symptomshappening earlier in the day. This is a serious problem that needs to beaddressed. RLS patients need to know that augmentation is treatableand manageable.”

Describing the indescribable Describing RLS – the disease itself – can be difficult. In RLS andAugmentation, RLS Foundation Board Member Starla Phelps says,“You can’t. When you say, well it’s kind of like you’ve got wormscrawling inside your legs or your arms, they just look at you. Andthat isn’t an adequate description. I can’t tell you what it’s like –electricity, worms, feeling like you’ve got to get out of your body.”

Patients give powerful accounts of how RLS interferes with daily life– for example, not being able to sit still in public places, hold a pen,or get a good night’s sleep. Foundation member Peter Brooks says hisRLS symptoms began when he was 48 and forced him to retire atage 50. “When I first started experiencing them, they caused sleepdeprivation, and that led to depression and despair because thesymptoms just wouldn’t stop,” he says.

Medical experts at RLS Quality Care Centers discuss RLS prevalenceand demographics, as well as medications available to relievesymptoms. According to Dr. William Ondo (Houston MethodistNeurological Institute), there is no universal solution for RLS –treatment must be tailored for each individual. In the case ofdopamine agonists, which can lead to augmentation, he says thattreatment is “a double-edged sword.”

Dr. Christopher J. Earley (Johns Hopkins Center for RestlessLegs Syndrome) explains that the term augmentation wascoined to distinguish the phenomenon from a simpletolerance. “If the disease is progressing and they are on a dopamineagent, then the probability is that it is not the disease; it is thesymptoms being driven by the drug itself,” he says. Augmentationcan be reversed by discontinuing the medication.

Withdrawal can cause intense symptoms, however. For Kee, it wasthe 34 worst days of his life, but he endured and has found relief in adifferent class of medication. He now volunteers as a support groupleader for the RLS Foundation.

“I’ve been through it long enough that I pretty well understand thecycle and when people get into [this] serious condition,” says Kee.“…I try to be their friend and their hope.”

The video received close to 4,000 views within one month ofposting on YouTube, generating many positive comments and anuptick in membership for the RLS Foundation.

In the words of one Foundation member, “Thank you for this video,a very helpful explanation for others who do not have RLS. It is sohard to describe!”

A broader augmentation awarenesscampaignThe RLS and Augmentation video is part of a broader strategy toinform patients, healthcare providers and the public aboutaugmentation. In January, the Foundation distributed a “meeting ina box” for support group leaders to share the video and additionalmaterials in their communities.

In April, the Foundation distributed the white paper “Summary ofRecommendations for the Prevention and Treatment of RLS/WEDAugmentation” to over 45,000 physicians across the U.S. in a directmail campaign. The paper was published by a joint task force (theInternational Restless Legs Syndrome Study Group, the EuropeanRestless Legs Syndrome Study Group, and the RLS Foundation,2015).

AcknowledgementsThe video was created by Buddy Coronado of BNC Media andMajor Lytton of Pixelcuts LLC, who traveled across the U.S. tointerview 13 patients and medical experts. Coronado and Lytton alsospent time at RLS Foundation headquarters in Austin to betterunderstand the challenges faced by people with RLS and tocollaborate with Foundation staff.

The RLS Foundation would like to thank Buddy Coronado andMajor Lytton for their creative expertise; video host Stacey DeanCampbell; Foundation staff members who helped conceive, developand edit the video; and the following individuals who shared theirtime and perspectives through interviews in RLS and Augmentation:

Augmentation Video Highlights Common Drug Side Effect

13

Dr. Richard P. AllenPeter K. BrooksDr. Michael Brownstein Caroline ChamalesKarla M. DzienkowskiDr. Christopher J. EarleyJanice Hoffmann

Donnie KeeDr. William OndoLewis PhelpsStarla PhelpsLori SchifrinStephen SmithRobert (Bob) H. Waterman, Jr.


2016 Highlights I Increase Awareness

12

What's New in RLS Research? Lynn Marie Trotti, MD, MSc October 28, 2015

Sleep Study: What's It All About? Brian Koo, MD November 4, 2015

RLS Triggers & Coping Strategies Norma Cuellar, PhD, RN, FAAN Decmber 8, 2015

RLS: Associated Conditions William Ondo, MD January 27, 2016

What is the role of Opiates in RLS? Christopher Earley, MB, BCh, PhD, FRCPI February 11, 2016

Children & RLS Daniel Picchietti, MD March 15, 2016

Pregnancy & RLS Jennifer Hensley, EdD, CNM WHNP, LCCE April 12, 2016

Depression & RLS John W. Winkelman, MD, PhD May 13, 2016

Medical Marijuana Jacquelyn Bainbridge, PharmD June 27, 2016

Sleep Deprivation Jeffrey Durmer, MD, PhD July 15, 2016

Mindful Meditation Linda Secretan August 31, 2016

PLMS: Is there Clinical Significance? Brian Koo, MD September 14, 2016


Webinars 2015 – 2016

13 www.rls.org


Leaders($10,000 or more)Anonymous (1)Ms. Ann S. AlspaughMichael Brownstein, MD, PhDMr. and Mrs. Tom DunaganPark McGintyMr. Joseph R. Portmann IIIMr. and Mrs. John ThieleBob and Judy WatermanXenoPort, Inc.

Benefactors($5,000 to $9,999)Anonymous (2)Ron and Sharon BarrettPeter and Incy BrooksMrs. Sherrie FrankelPickett and Bob GuthrieMr. Mark T. HicknerRoberta and Edward KittredgeLocal Independent Charities of

America CFCM. Lynn McCrackenCarolyn MohnGregory C. OberlandMr. and Mrs. Lewis M. PhelpsWilliam Rhodes FoundationMs. Peggy R. Walker Conner

Patrons($2,500 to $4,999)Mr. Edward BulthuisRuss BuschertMrs. Rhondda L. GrantMrs. Annette S. HunterMr. and Mrs. Paul RochesterMr. Freeman H. Smith IIIUCB, IncMr. Greg WalstraNaomi and Michael Zigmond

Sponsors($1,000 to $2,499)Anonymous (4)Carolyn C. AcheeRoger and Loree AustinMrs. Barbara BereBravelets, LLCThomas A. ChurchillMs. Barbara E. ClucasLisa & Erik CressmanJ. Hunt DowningGinni and Chad DreierChristopher J. Earley, MB, BCh,

PhD, FRCPIMr. and Mrs. Louis EchavarriaBarbara A. FaraoneMs. Vera M. GerhardtSeth GlogowerMs. Elizabeth GrantMrs. Gail GrimMs. Anne W. HammondMr. Michael HogeorgesLeon and Dina Krain

Edmund Wattis Littlefield, Jr.Colin MacKenzieMr. and Mrs. J. Terry ManningMr. Howard McNallyMs. Jacqueline C. MorbyMr. Terry MyersMr. Robert H. RitterbushLaura Scott HoffmanMr. & Mrs. E. Randall SmolikDr. Craig SnydalMs. Jan A. SoggeJack StoneMrs. Cindy D. TaylorRobin TostMr. Aleksandar ToticArthur S. Walters, MDMs. Toby Woodhouse

Sustainers($250 to $999)Anonymous (21)Mr. and Mrs. Ralph L. AlbrightMr. and Mrs. Hank S. AldrichMr. John AlexandersonGela AltmanEvelyn D. AndersonMrs. Susan ArndtDrs. Jacquelyn and Scott BainbridgeBob BarkerMr. Quentin BassettMrs. Phyllis BazzanoJoe BeardMrs. Catherine K. BeckerMr. Kent BellBarbara BerrierMr. G. William BissellGeorge F. BoneDolores BowerMrs. Kay BowersMr. Matthew BrowarMrs. Lida R. BrownMargee BurkeMs. Felicia M. CashinCaroline ChamalesMs. Bonnie R. ChristensenLee C CoatesSheila C. ConnollyMs. Suzayne W. DavisMr. and Mrs. Karl F. DietzelMindy and Joe DillElizabeth DirkxNonda DonovanRobert L. DorfmanMrs. Katharine DownhamHelen DrewettMr. Peter EdwardsLori EmslieJim EmswilerMr. Robert EwartMr. Stefan FeyenSusan G. FidelThomas FlandersMr. and Ms. John M. FlatleyMr. Alan Freestone

continued on page 15

RLS Foundation Levels of Giving

At the RLS Foundation, we rely on private donations tomake our work possible. While we do receive someindustry grants, our lifeblood is you and yourcommitment to our mission. We cannot thank youenough for the support you give every year.

Unrestricted gifts give the Foundation the flexibility totarget funds for programs and projects that are in themost need of financial support.

Restricted gifts may be designated to three areas:quality care centers, education and research. Donationsto these funds are earmarked for special projects thatmay complement your intentions more closely.

Monthly giving allows you to spread your donation outover the year and enables us to count on a more evenstream of gifts. You can also choose to restrict your giftswith this option. Monthly giving can bedone by setting up a recurring credit card gift.

Tax-deductible donations are the quickest and easiestway to give to the RLS Foundation. Checks payable tothe RLS Foundation or credit card donations completedonline are fully deductible and provide an immediatesource of income for programs.

Appreciated securities are gifts that may allow you toeliminate capital gains taxes. In nearly all cases, you areable to claim a charitable income tax deduction equal tothe fair-market value of the securities, check with yourtax advisor.

Bequests given through your estate at the time of yourdeath are an attractive way to make sure that yourinterests are preserved. When you let us know aboutyour plans to give a gift in your estate, you become amember of our Ekbom Heritage Society, an elite groupat the Foundation committed to our mission and visionfor the future.

If you would like to learn more about planned giving,please request our Giving Avenues brochure or contactus at 512-366-9109 or [email protected].

LevelsWe value all of our supporters at every level. Each ofyou makes an important impact on the programs thathelp so many living with restless legs syndrome.Thank you!

Leaders $10,000 and aboveBenefactors $5,000 to $9,999Patrons $2,500 to $4,999Sponsors $1,000 to $2,499Sustainers $250 to $999Supporters $100 to $249Friends $75 to $99Contributors $1 to $74

1514www.rls.org


Mr. Thomas GardnerW. Peyton GeorgeMrs. Ruth H. GillisMr. Doren GoldstoneIn Memory of Janet G. GoreckiAnne Adams GorryCharles C. GouldGeorge GrandisonAnna Grassini and John McDevittMrs. Judy GreffMs. Kay I. HallMrs. Elizabeth M. HaningDr. and Mrs. Matthew R.

HarmodyMr. Roland W. HartMr. Thomas HartzogLynne and William HerndonMs. Barbara HirschyJanice and Larry HoffmannMs. Isabella W. HorskyMr. and Mrs. Max E. JesterMr. Jayson KendrickMr. John KenyonMr. John KievitMichael J. Kikta, MDMs. Kelly KipkalovDr. Marvin KleinauMr. Kevin KohagenMrs. Faye G. KunzeWalter LangfordMrs. Betty LaphamMrs. Lee LipmanPaul LohrenzLorinna W. LowranceTom MainMr. Lloyd D. MathisJerry McCaslinDorothy McGinnisPat & Diane McKeagueMs. Janet Mercer RoseMarney MeschMr. Carl MeyerMrs. Diane P. MoyerRoger MulvihillMr. George MurrayKenneth F. MyszkaTheresa NelsonMr. John A. Neuland, JrNancy S. PassananteMarika Pauls Laucht and

Donny CheungProf. Robert J. PeroniMs. Joyce PerryStarla PhelpsGail L. PickeringJoel & Lisa PughMrs. Jackie RamseyerMs. Anne RappMr. Brian RedfernSusan ReedProf. Victor H. RieckMr. Lawrence RockwoodMrs. Karen A. RodierMr. David T. Sands

Mrs. Elizabeth O. SchebenLori SchifrinJan SchneiderMs. Sonia SchneiderMr. and Mrs. Roger C. SchulteMr. John SchwagerLinda SecretanMr. and Mrs. F R. SekowskiHarry ShaiaMrs. Louise SharpMr. Daniel G. ShoafDouglas and Charlotte SlackFrances Cain SloteMr. Dennis C. SmithMr. and Mrs. Stephen N. Smith, PEWalter SmithMs. Jacqueline A. SnodgrassMr. Robert E. SpanglerMr. Jim SteinMrs. Judith SteinheiderDr. Gilbert StormsHelen W. SutphenAlletta R. ThompsonGrant P. & Sharon R. ThompsonMr. John TrefethenMr. and Mrs. James T. TrollingerMr. Thomas E. Turk, JrMr. Oleg VasilyevMr. Jerry VulstekMarguerite H. WagnerChristine Tunison WaitMs. Joy K. WalkerMr. and Mrs. Cal WalstraMrs. Shirley M. WareKit WeinschenkJon WellinghoffLeah R. WickhamMr. Joseph K. WigginsLarry and Fran WilliamsJerome P. WitekMr. Paul WitkowskiMrs. Joanne M. WojahnDiane WoodMrs. Bonnie B. YelvertonMr. and Mrs. Robert H. YoakumMr. Dean Zarras

Supporters($100 to $249)Anonymous (36)Mr. Kenneth AchironCarole AdairJuan A. Albino, MDSerena AllemanJanet L. AllisAmazonSmile FoundationGayle V. AndersonMrs. Patricia AndersonMr. Ralph W. AndersonMr. Tom R. AndersonMr. & Mrs. Leland E. AndersonMs. Jane R. AndrewsEstelle AnstettMr. John Arens

Larry L. ArndtMs. Joan ArsenaultMs. Carole S. ArthurMartha AtchleyRichard C Austin, MDMr. Lloyd E. AxelssonMr. Donald N. BabbMr. Wilmer BaheMrs. Janet BaileyLynne P. BakerMs. Agnes R. BarrettMs. Phyllis BeeryMr. Carl BeilStephen BelangerMs. Barbara BellamyLois E. BelohlavekLola BermudezMrs. Margaret BerwangerMr. Kyle N. BeversElizabeth L. BewleyMr. Richard BillingsMr. John P. BlackMrs. Barbara BlahutaMr. Steven BoermaEdwina H. BogdanMr. Jeffrey BorofskyMr. Ward C. BournMrs. Sally H. BowenCarolyn P. BowerGerald F Bowling, MDNancy BradfordMr. Bruce BredlandMrs. Marilyn K. BrendleMs. Carol BrettaArnold BrewerMr. Sydney BrittMs. Betty M. BrockingtonMs. Ellyn BroekerMrs. Dorothy E. BrooksMs. Ellen BrownLucy L. BrownMs. Susan P. BrownMr. Dietrich BrunnerMr. Terry BrutonMrs. Pamela BucklandMs. Mary BurnsMr. Richard C. BurtonNorma C. ButlerMs. Leatrice CaldwellMrs. Ramona W. CameronMs. Bonnie CampbellKenneth A. CampbellDr. Margaret CampbellMs. Susanne CampbellMr. Al CapitaniniClara V. CarlsonMs. Stephanie CartyMs. Mary Lou CaseGerard CastryMr. Robert K. CaulkMrs. Kitty ChamplinMr. Pankaj Kumar ChandelMs. Barbara J. ChandlerMrs. Florence A. Chandler

Ms. Peggy ChappellMr. Lawrence ChenChevronTexaco Matching

Gift ProgramMs. Laura E. ChildersMs. Ann T. ChristmanMs. Mary CianoMr. Ron CicchiniMrs. Annette D. CoferArnold and Annebelle CohenMrs. Rei M. CollingMs. Kathleen B. CollinsMs. Barbara ConitsMs. Silvia CorrieMrs. Elda CostiganMs. Suzanne CovertMrs. Dorothy B. CowlesMs. Carol L. CoxMs. Alice CraigZibby CrawfordMrs. Lois M. CrouchMs. Lise CruzMs. Terri CunliffeMr. James M. CunninghamMs. Marie CurtisMs. Arwilda CushmanSusan DabelsteenSamuel D'Amato, MDMs. Barbara L. DammannElizabeth DanleyMs. Vicki M. DanverJonelle Prether DarrJim DaubenmierPastor Bruce H. DavidsonMrs. Elaine F. DavisMichael DavisMr. Don R. Deabenderfer, JrMr. Barry DeFoeDr. Edward T. DehanMark & Sandy De MuriMrs. Doris L. DentMr. Ronald DeRuiterMs. Helle K. DeSimoneRuth DiBellaMr. Charles DickinsonMr. Bernard N. DickmanR C Dillihunt, MDMary and Joe DobrowolskiAnne B. DorseyMrs. Sylvia DowstMrs. Ursula Du FresneMr. Ed DudekPaul H. DudekPaul DudleyMrs. Mary EarleLorne L. EbelMs. Jean K. EckertCarol T. EdmistonJoanie ElderMs. Phylis ElsingMr. Eric EngMrs. Judy EnslinMrs. Laurel Euler



15 www.rls.org14


Mrs. Diane M. EvasickRichard EzellMrs. Pam FairlyMs. Margaret FalkMr. Sigo FalkDr. Bradford O. FangerWin FarquharMr. Eugene L. FerriesJames B. FieldMrs. Mozelle N. FilimonMr. Eugene FirmineMs. Beth FischerMerial R. FitzgeraldMrs. Mary K. FlanneryMrs. Paula FlemmingSusan FlintomMr. and Mrs. Emmett T. FloreaElmer G. FoleyDr. Harriet FormanMr. Robert FowlerEvelyn FranceMrs. Korinne FrankJanice H. FrizzellMrs. Mastern FullerJames B. FullertonMr. John GageMarcella GallagherMs. Sylvia R. GallagherDebra L. GarnerJeannine GarrettMr. Newell GayMr. Peter GerameKenneth E. GermanMr. Jeff GibsonMr. David L. GilbertsonMs. Debbie GillMr. Jerry GillandMs. Marion E. GillenHorace M. GlassMs. Charlotte B. GoddinMs. Pat GolabMrs. Ruth GoldbergDorothy D. GoldstickCarol GoodmanJanice Stenson GoodmanMr. Kenneth Goodson, JrLeni GottliebMr. John F. GrafenauerErica GrantmyreMr. David L. GrayMr. and Mrs. Lawrence S. GrayMs. Jane B. GreenMs. Sabrina GreenseaMrs. Sheryl GreenspanMr. Jerald GriffinMr. Albert GuayJames A. GuldanDouglas E. & Marcia S. HaasMr. Ron HaedtMrs. Carolyn M. HahneMrs. Claire HakimDr. Judith HallMarilynn S. HallmanAnnelies E. Hampel

Mr. Dennis HansenMrs. Sharon HansenMrs. Nancy C. HardyEvelyn HarperB. HarrisMs. Holly HarrisDr. Roy D. HarrisMr. Burlin C. HarrisonMrs. Michelle HartDr. Leo M. HartkeMr. Robert HasenstabDr. Jerald HattonMs. Marianne HaugVic & Bettye HauserMrs. Lynn HawthorneMs. Joyce C. HeathMrs. Judy K. HeckmanJames HeinzMrs. Jan Hempstead RNMr. Stephen HendersonKevin and Marsha HennesseyMs. Gail HillMr. John D. HimmelfarbMr. Fred HinckleyHistoric Preservation Association

of Coral GablesMr. Lloyd HittleMrs. Alberta HlozekMs. Eleanor HoErnest F. HodsonJudith HoffmanMr. Cornelius HofmanMr. David HogeShirley C. HolleyMr. Peter K. HooverMr. Ron R. HoppertonKenneth and Diane HornMs. Julie S. HorowitzMrs. Charlene M. HoughtonJohn T. Hubbard, JrMs. Margaret T. HuddyMs. Paula J. HughesMrs. Jan HulseMary L. HuntMrs. Sharon HuntingtonMr. Thomas P. HuntleyThomas D Hurwitz, MDMrs. Cheryl L. HussJean Hayden HutchinsMrs. Marjorie G. HutchisonLucille L. HynesMrs. Maureen JandaMrs. Barbara JohnsonMrs. Patricia A. JohnsonBillie M. JonesByron C. Jones, PhDMs. Priscilla JosephMr. and Mrs. Hisashi JubaMr. Helmut JungeDr. Alvin KageyMrs. Georgia KahlerJoy KahnMr. Edward KalinowskR. Fred Kautz

Mrs. Linda M. KawtoskiMs. Judith KayeGarry KearnsDonnie KeeMary C. KehlhemTerry KellenMr. Darrin KelleyJanet KemperMs. Doreen KimJean B. KingMr. Patrick J. KingLTC (Ret) Mary Pat A. KleeLt. Col. (Ret) Paul B. KnutsonRosemary KosmakMs. Judith A. KotarMrs. Kathleen KotchiMr. James KrallMolli KrauszDr. Glenn KreielsheimerDr. Laurence KriegMr. Michael KunMs. Linda LaBergeYuan Yang Lai, PhDMs. Anne LampeBob LandauerMrs. Cynthia LandgrebeLinda K. LandisMr. and Mrs. Brian LangevinMrs. Rae LapidesMs. Kim LarrowMr. Mike LarzelereMs. Elisabeth LauraDavid M. LeeMs. Patricia A. LeighfieldDr. and Mrs. Bruce LeipzigPeg LenzMr. Scott R. LevadMr. Art LewandowskiAmelia LewellenGary and Barbara LindDorothy ListonDr. Elizabeth LittellJanis LopesEileen S. LorenzDr. Betty Louise LumbyAndrea M. LutzMr. Richard MachalekMrs. Barbara MackTom MackMr. Kenneth F. MacKayMrs. Saida S. MalarneyFrank E. ManchesterMr. John O. ManningMary Helen ManningMs. Christina MarciniakCarol Mayer MarshallMr. Leonard MarshallMr. David MartensMr. Edward MatkinsPaul S. MattheissAlice MaxinKevin B. May, CPATita McCallMrs. Rachel McClelland

Mrs. Buffy McClureMr. Robert P. McDonoughPeter and Fin McElroySteve and Kris McGawLinda McKennaMs. Linda McMenamyMs. Lisa L. McPhersonMrs. Beth MenefeeMs. Marjorie MeredithMrs. Ruth A. MeyerMr. Andreas MihosMrs. and Mr. Carol E. MillerMr. Charles J. MillerSally MillsMrs. Ida R. MinorHelen MisiaszekMrs. Jill MitchellJonathan and Carol MitnickEric MoenMs. Karen MokrzyckiMs. Gaynell MolinetMs. Lynn MontgomeryMrs. Doria MoodieZeyad Morcos, MDDr. Robert L. MorissetteSteve MortonMrs. Annalee MuellerMrs. Patricia L. MullinsSandra MurphyWalter W. Murrell, PhDMs. Mary Jane NashMrs Gloria P. NicelyMr. Arlo R. NordMs. Gail NordbyMs. Barbara S. NorthKeith and Bonnie NoyesMs. Virginia P. NurcoMr. Peter A. NussbaumMr. John C. O'DonoghueMs. Carol M. OgrodnikMrs. Helen C. OlsonDr. Robert L. OnopaMrs. Nancy L. OrsbornMr. Ron W. PanterMs. Kathleen ParkerMrs. Tarlton F. Parsons IIMr. Robert PattersonMs. Maria PaulMs. Anita PawleyDonna S. PeckinpaughMs. Judy PennimanLorys PenrodDr. Gerald F. Peppers, MDDonald L. PerryMrs. Nancy W. PetersonJustine A. Petrie, MDMrs. Joyce PiskulicMr. Perry PlankMr. Stephen PlattusMr. Alan PolczynskiRobert W. PotterMrs. Christina M. PriceStephen N. Price


1716www.rls.org



Mrs. Elizabeth PurcellMrs. Betty J. QuistDr. Rollin J. RandallMrs. Peter L. RandlevMukunda RaoMs. Mara RasureMr. Walter H. RauserCarey RayceMr. Martin RedmanMr. Richard D. Reed, SrMr. Robert Reese, JrRose RegazziDaryl and Ella ReidMrs. Diane M. ReinhartMrs. Karen RemickMr. Don RensbergerShirley ReseckMs. Susan C. RichardsRoberta M. Richardson, MDMerlin J. RicklefsMs. Donna RiversCarol RobertsKelyn RobertsJean RobertsonDr. Dominic Roca, MD, PhDMaurice RollinsMrs. Janice RottmanMr. Mark RusleyClaudia A. RuzanicDr. Larry M. Salberg, MD, FAAN,

FAASMMs. Donna A. SandersMs. Sonnhilde SaundersMs. Jane SautherMs. Toby SchaferPhyllis and Tom SchamberMrs. Shirley L. SchaplerMs. Helen T. SchauerFritz and Ellen SchenkMrs. Anne E. SchleichJeanne SchoedingerMs. JoAnn E. SchoeneggeMerle SchoessMs. Donna M. SchroederMr. Winn SchultzMr. Larry SchwartzMs. Mary SchwartzDr. Fred SchwingMr. Martin SchwirzkeSusan ScottMs. Joyce SecondoCarol J. SeelyMs. Diane SegelDonald SemrauMr. Benjamin SenauerMr. Spencer O. SetterShirley I. SeymourMs. Lois ShaevelDr. David S. ShaferMr. Gerald SheaMs. Bonnie ShearS. J. ShedenhelmMs. Carmen ShellSylvia Shields

Michael H. Silber, MB, ChBKay SimmonsMr. David SingerGene SivertsonMr. Don SlyDwain L. Smith, DVMMr. Michael SmithMr. and Mrs. Michael K. SmithPreston L. SmithMr. Ronald J. SmithDonna L. SonsMr. Dirk SoutendijkMichael & Regina SpauldingDr. Jeffrey SpectorMrs. Joyce C. SpiveyMs. Rosemary StaderMrs. Sheila StankusMrs. Darlene StaufferMs. Jacqueline N. SteensmaMrs. Faye M. StephenMr. Walter Stevens, JrDr. Eugene StillMr. and Mrs. Marshall StiversMrs. Harriet StonerMr. Richard StraubMr. Joe SucheckiMichael G. SullivanMr. Peter SullivanNan SuydamMs. Pamela SwainMr. Timothy SwansonMarian W. SweeneyMr. Robert V. SwensonMs. Susan SwigartMs. Janelle R. Tallent VotawMr. Tom TangrettiMs. Kathleen TaubeHarry C. TaylorJanice TaylorMr. Thomas P. TaylorMrs. Sarah TerhuneAndrew T. TershakSusan TheissJames M. Thompson, MDMr. Eugene TimmonsHelena TompkinsMrs. Shirley S. ToothmanMr. Melvin G. TrammellMs. Janet L. TrentMr. David A. TuomalaH. M. TurekMr. T Michael UlwellingUnited Way of Central MarylandMs. Elizabeth K. UsinaMr. Charles B. VailMr. Gary W. Van LiewCarol Van NuysMs. Jackie VasquezPatricia VavrickMs. Shirley VeachMary VehrenkampMs. Patricia VeuveMr. Richard WaalkensMs. Davida C. Wagner

Kate WagnerGordon WaldronMr. Gary WalkerLaura WalkerMr. Bruce WallPeggy WaltersMs. Kay Frances WardropeMr. Bill WarfelNeva M. WarsenMr. and Mrs. Lawrence P. WatsonMrs. Judith WaxlaxMr. George WeeksMs. Victoria WelchMr. and Mrs. Eugene WendtMr. Bill WendtLucille WesterveltMr. Barry WestonMs. Allison Whitney ColemanMs. Carolyn WilcoxDr. Judy WillardMrs. Donnetta WilliamsMr. John B. WilliamsMs. Laurena WilliamsMs. Judith WilloughbyMs. Jean WimerMs. Lynsey WinnerMrs. Norman W. WoehrleMary Lou WohlhieterMr. Eduard WojczynskiLucy H. WongMrs. Linda WyattMs. Lois YarborAlbert YenniMs. Jackie YoshiokaHarvey L. YoungMs. Linda L. ZanklMs. Sandra L. ZanklBarbara Zizka

Thank You!


17 www.rls.org16


1918www.rls.org

Thank you for your continued financial support and unwavering commitmentto the RLS Foundation during our 2016 fiscal year. This year, individualdonors provided the majority of support for Foundation programs andactivities, representing over 75 percent of donations collected.

Our popular monthly webinar series, support group meetings and educationalmaterials serve to educate the general public and medical community aboutRLS. In fact, in early 2016 the Foundation distributed an important researchpaper summary on the prevention and treatment of RLS augmentation to45,000 medical practitioners around the United States. Additionally, weupdated our website, providing easier and more user-friendly access toFoundation resources. Our social media presence has grown exponentially, andour active platforms now include Facebook, Twitter, Instagram, YouTube,LinkedIn and Google+. This has allowed us to expand our reach and fulfill ourmission to bring greater RLS education and awareness to the public.

Furthermore, this year we reinvigorated our Research Grant Program byoffering up to eight new pilot grants totaling $200,000. The addition of threenew Quality Care Centers provided individuals living with RLS access to carefrom leading RLS experts. Together, these two robust programs fulfill ourFoundation goal of finding better treatments, and ultimately a cure for RLS.

The RLS Foundation's Finance and Audit Committee monitors revenue andexpenditures to ensure they are in balance, and reviews forecasts for theupcoming fiscal year. Meanwhile, the Board of Directors provides financialoversight for the organization by ensuring monies are spent in programsbeneficial to the members of the RLS community.

Each gift received, regardless of size, allows us to fulfill our mission andultimately, brings us one step closer to a cure.

Sincerely

Lewis M. PhelpsChair and Acting Treasurer, RLS Foundation Board of Directors

Financial Report

Lewis PhelpsChair and ActingTreasurer, RLS FoundationBoard of Directors


19 www.rls.org

Restless Legs Syndrome Foundation

Statements of Activities • For the Fiscal Year Ended September 30, 2016

Revenues and support 2016

Contributions $ 650,241

Membership dues 1 110,428

Investment earnings 1 31,785

Other 139

Total revenues and support $ 792,593

Expenses

Program services:

Education $ 325,222

Membership 189,605

Research 79,882

Support groups 31,104

Total program services 625,813

Fundraising 117,390

Management and general 1 81,002

Total expenses 824,205

The RLS Foundation's full financial statements, the complete audit opinion of Reynoldsand Franke, and all accompanying notes are available online at: www.rls.org

Where Our FundsCome From

Contributions 81%Membership 14%Investment return 4%Miscellaneous income 1%

Education and awareness 39%Membership 23%Fundraising 14%Research 10%General and administrative 10%Support 4%

Where We UseOur Funds

18


3006 Bee Caves RoadSuite D206Austin, TX 78746

Tel: [email protected]

www.rls.orgrlsfoundation.blogspot.comFacebook: RLSFoundationTwitter: @RLSFoundationDiscussion Board: bb.rls.orgLinkedIn: restless-legs-foundation

2016LASER FOCUSED TO FIND A CURE

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