2015 iyear of augmentationkarla m. dzienkowski, rn, bsn executive director austin, tx scientific...

2015 I YEAR OF AUGMENTATION

RLS ANNUAL REPORT 4 1 16_Layout 1 4/1/16 9:56 AM

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

Jacquelyn (Jacci) Bainbridge, PharmD, FCCPChairEnglewood, CO

Michael Brownstein, MD, PhDRockville, MD

Régis Langelier, PhDOcean Park, ME (Former Treasurer, Term ended 12/31/14)

Joseph Martin, MD, PhDBoston, MA

John McDevitt, PhDNew York, NY

Lewis Phelps, Treasurer and Vice ChairPasadena, CA

Matthew (Matt) PicchiettiCarbondale, IL(Term ended 12/31/14)

James SchaefferLa Jolla, CA(Resigned 5/2015)

Linda Secretan, SecretaryEagle, ID

Michael J. Zigmond, PhDPittsburgh, PA

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

Executive Staff

Karla M. Dzienkowski, RN, BSNExecutive DirectorAustin, TX

Scientific Advisory Board

James R. Connor, PhD, ChairM.S. Hershey Medical Center, Pennsylvania StateCollege of Medicine Hershey, PA

Michael Aschner, PhDVanderbilt University Medical CenterNashville, TN

Marie-Françoise Chesselet, MD, PhD Reed Neurological Research Center, Los Angeles, CA

Christopher J. Earley, MB, BCh, PhD Johns Hopkins University Bayview Medical CenterBaltimore, MD

Emmanuel Mignot, MD, PhD Stanford Center for NarcolepsyPalo Alto, CA

Claudia TrenkwalderCenter of Parkinsonism & Movement DisordersKassel, Germany

George Uhl, MD, PhDMolecular Neurobiology Research BranchBaltimore, MD

Medical Advisory Board

Birgit Högl, MD, ChairSleep Disorders ClinicDepartment of NeurologyInnsbruck Medical UniversityInnsbruck, Austria

Christopher J. Earley, MB, BCh, PhD,Vice ChairJohns Hopkins University Bayview Medical CenterBaltimore, MD

Diego Garcia-Borreguero, MD, PhDSleep Research InstituteMadrid, Spain

Jennifer G. Hensley, EdD, CNM, WHNPVanderbilt University School of NursingNashville, TN

Brian B. Koo, MDSleep Medicine Program, CT Veteran AffairsHealthcare SystemYale University Department of NeurologyWest Haven, CT

Suresh Kotagal, MDCenter for Sleep Medicine & Division of ChildNeurology, Mayo ClinicRochester, MN

Clete A. Kushida, MD, PhD, RPSGT Stanford Sleep Medicine CenterRedwood City, CA

Mauro Manconi, MD, PhD Sleep and Epilepsy Center, Civical Hospital Neurocenter of Southern Switzerland Lugano, Switzerland

William Ondo, MD Houston Methodist Neurological InstituteHouston, TX

Abdul Qayyum Rana, MD, FRCPC, FRCP-Edin (HON)Parkinson’s Clinic of Eastern Toronto Toronto, Ontario, Canada

Lynn Marie Trotti, MD, MScEmory Sleep CenterAtlanta, GA

Arthur S. Walters, MDVanderbilt University School of MedicineDepartment of Neurology Nashville, TN

John W. Winkelman, MD, PhDDepartments of Psychiatry & NeurologyMassachusetts General HospitalHarvard Medical SchoolBoston, MA

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February 2, 2015Webinar Meeting

March 10, 2015Conference Call

March 24, 2015Conference Call

June 11, 2015Conference Call

June 22, 2015Webinar Meeting

July 20, 2015Conference Call

August 19, 2015Conference Call

September 17, 2015Conference Call

September 23, 2015Conference Call

October 27, 2015Conference Call

November 7-8, 2015 Austin, TX

December 11, 2015Conference Call


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This has been an exciting year at the Restless Legs Syndrome Foundation. 2015 was namedthe "Year of Augmentation" to focus education and awareness on recognizing and copingwith augmentation. Our dedicated staff, members of the Board of Directors, Medical andScientific Advisory Boards, and many Foundation volunteers worked together to strengthenawareness, enhance education regarding augmentation, develop a quality research program,and double the number of RLS Quality Care Centers. This progress would never havehappened without our enthusiastic and dedicated executive director.

2015 was dedicated to educating practitioners, patients, and caregivers about augmentation,a side effect of dopamine agonists and carbidopa/levodopa. This was a wildly successfulcampaign driven by webinars attended by a record number of healthcare providers andmembers. The beauty of this method of education is that people from all over the worldcan attend the programs live or listen to them on-demand by selecting a webinar from thelisting located in the members only section of the Foundation's website. These efforts aresure to enhance awareness and change patient outcomes for good.

Research is one of the RLS Foundation’s core components. In 2015 we launched aninitiative to expand and reinvigorate our research program. Our grant submissionsincreased in number and quality. We started asking more specific questions and gettingbetter answers. The grant process has become more refined reflecting a higher standard andrigorous review system. We are fortunate to have enthusiastic and dedicated researchers inthe field of RLS to seek answers to questions that will lead to durable treatments and acure.

The expansion of the RLS Quality Care Center network is very exciting. The RLSFoundation has more than doubled the number of RLS Quality Care Centers across theglobe. Patients can be assured that they will receive state of the art care at recognizedcenters across the US and abroad. We will continue to grow this successful program in theyears to come.

Thank you for your leadership and for making 2015 a successful year at the Foundation.We look forward to much success and growth in 2016. I want to thank the members ofour board of directors, advisors on our medical and scientific boards, staff, volunteers andexecutive director for your support and dedication to myself and the people we serve.

Sincerely,

Jacquelyn (Jacci) Bainbridge, PharmD, FCCPRLS Foundation Board Chair 2015

Jacquelyn (Jacci)Bainbridge,PharmD, FCCPChair, RLS FoundationBoard of Directors

www.rls.org2


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In a study funded by the RLS Foundation, scientists at theUniversity of California at Los Angeles (UCLA) found that aclass of drugs called H3 receptor antagonists may hold potentialfor reducing symptoms of RLS.

A research team led by Yuan-Yang Lai, PhD, found that iron-deficient rats given the H3 receptor antagonist thioperamideexperienced reduced periodic limb movements (PLMs) andincreased sleep time.

Based on these findings, the UCLA team led by Dr. Lai, in thelaboratory of Jerome Siegel, PhD (co-investigator of the study),has received a five-year grant from the National Institutes ofHealth (NIH) to further explore the topic. Dr. Lai says, “TheNIH-funded projects will enable us to identify the neuralstructures and neurotransmitters involved in the generation ofRLS, as well as to test potential drugs for treating RLS.”

James Connor, PhD, is chair of the RLS Foundation ScientificAdvisory Board. “This study by Dr. Lai is a perfect example ofwhat we are trying to accomplish with the RLS FoundationResearch Grant Program. The question Dr. Lai is pursuing isfundamentally important to identifying the cause of RLS anddeveloping a therapeutic target. In addition, the seed funds fromthe Foundation allowed Dr. Lai to generate sufficient data toleverage the RLS funds into a much larger NIH grant. Thus,this work can continue to progress and do so on a larger scalewith the larger funds,” says Dr. Connor.

About the study

Dr. Lai received a grant from the RLS Foundation in 2012 forthe project “Effect of histamine H3 receptor antagonism onperiodic leg movements in iron-deficient rats – an animal modelof restless legs syndrome and its treatment.”

The first part of the study aimed to determine if iron-deficientrats would serve as an effective animal model for RLS, sincehumans with RLS are known to have inadequate levels of ironin the brain.

Dr. Lai’s team fed the animals a low-iron diet (4 ppm iron) fortwo months from weaning (21 days) and confirmed irondeficiency through blood tests. Researchers then measured theanimals’ sleep and motor activity.

In comparison to animals on a normal diet (35 ppm iron), iron-deficient rats were found to have a higher index of periodic limbmovements when awake or asleep. These movements decreasedwhen the rats were given pramipexole, a dopamine agonist approved by the Food and Drug Administration for RLS

treatment, further suggestingthat the iron-deficient rat servesas a suitable animal model forthis disease.

The animals were thenevaluated when giventhioperamide, an H3 receptorantagonist. Iron-deficient ratshad reduced motor activitywhen asleep and when awake(lower PLM activity). Theyalso had significantly longersleep time. “The drug waseffective for almost 10 hours.This could be very good forhuman treatment, becausepeople need around seven toeight hours of sleep,” says Dr. Lai.

In iron-deficient rats, researchers found higher levels ofhistamine H3 receptor in the striatum, a brain structure thathelps control movement.

Dr. Lai says the study will spur further exploration of H3receptor antagonists as potential drugs for treating RLS inhumans. “This class of drugs could benefit patients. We don’tyet know if it will generate augmentation, like the dopamineagonists.”

While the dopamine system has been the focus of much RLSresearch, these findings show that the histamine system mayalso play a role. Further, H3 receptors are present inperipheral systems like muscle and skin (in addition to thebrain), and Dr. Lai wants to explore whether they may belinked to the uncomfortable sensations associated with RLS.

Through this relatively small study, scientists have taken asignificant step toward better ways of treating RLS. “We hopethat someday we can cure this disease,” says Dr. Lai.

• • • • • • • • • •

The question Dr. Lai is pursuing isfundamentally important to identifyingthe cause of RLS and developing atherapeutic target.

www.rls.org

2015 Highlights I Find a Cure

Research Shows H3 Receptor Antagonists HavePotential in RLS Treatment

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Yuan-Yang Lai, PhDUniversity of California at Los Angeles(UCLA)


The RLS Foundation awarded Yuqing Li, PhD, of theUniversity of Florida, a $35,000 grant for research on the roleof the MEIS1 gene in RLS and to explore a related animalmodel for RLS.

In previous studies, Dr. Li and his collaborators shed light onthe role of MEIS1. The current study will continue this worktoward developing an animal model to help advance new drugdevelopment for patients.

“Dr. Li’s research is an exciting opportunity to find new viabletreatment options for individuals living with RLS,” says KarlaDzienkowski, executive director of the RLS Foundation.“During our ‘Year of Augmentation’ at the Foundation in2015, this research offers hope to the millions of individualsliving with the disease, as well as for future federal funding tofurther Dr. Li’s research on RLS.”

Study builds on previous genetic research

The causes of RLS are not well understood, but researchconducted in labs around the world has historically looked atdopaminergic neurons in the brain and at iron metabolism.

A breakthrough came in 2007, when scientists found geneticvariants in several genes that are associated with RLS. Amongthese was MEIS1, a gene that showed maximum involvementin RLS. Scientists have since bred mice that carry the mutationsin the mouse counterpart of the human MEIS1 gene. Thesemutant mice showed motor restlessness similar to that of RLSpatients, which opened up a unique opportunity for scientiststo explore how MEIS1 mutation might cause RLS symptomsand how to develop new ways to treat RLS.

With these developments, Dr. Li’s group began to study RLS.His team was previously focused on Parkinson’s disease anddystonia. A significant percentage of patients with these diseasesalso have RLS, and this triggered his interest in RLS.

In the current study, called “Characterization of MEIS1heterozygous knockout mice as a model of Willis-Ekbomdisease,” the researchers will perform a detailed analysis of theMEIS1 mutant mice. They will look at whether the MEIS1mutant mice show other RLS symptoms such as changes insensation. They will also examine the brain’s dopamine systemand determine what areas are affected by the MEIS1 mutation.

Dr. Li’s group will also studywhether the iron metabolismand blood counts have changedin the MEIS1 mutant mice.Iron metabolism is closelylinked to the function of thebrain’s dopamine system, andmultiple early studies havelinked an altered ironmetabolism to RLS.

Most importantly, Dr. Li’sgroup will try to treat theMEIS1 mutant mice withknown dopamine drugs used inRLS patients to see whetherthese drugs alleviate the RLSsymptoms in these mice. The goal is to validate the MEIS1mutant mice as a useful model to study RLS and graduallywork toward testing other potential treatments using the alteredmice. Dr. Li will use the data collected from these studies toapply for future federal funding to further his research on RLSand toward ultimately finding a cure.


RLS Foundation Funds Research on MEIS1 Gene

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5 www.rls.org

Yuqing Li, PhDUniversity of Florida


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Changes in the brain’s white matter may develop at a higher ratein RLS patients whose symptoms begin later in life than inpatients with symptoms early on, according to a study at YaleUniversity funded by the RLS Foundation.

A team led by Hochang “Ben” Lee, MD, found more whitematter lesions (called white matter hyperintensities or WMHs)in patients with late-onset versus early-onset RLS, relative topeople without RLS. ese findings suggest that late-onset RLSmay be caused in part by cerebrovascular factors.

“RLS might be more than a single entity,” says Dr. Lee. “Somepeople develop RLS in their later life – at 45 years old, or 60.ese patients tend to have less familial history of RLS. So itdoesn’t seem to be something they are born with.”

Dr. Lee describes white matter lesions, which occur in thegeneral population, as resulting from “a cumulative process dueto blood vessels as you get older and have ischemic changes thataccumulate in the brain.” e fact that more WMH was foundin patients with late-onset RLS than those with early-onset RLSsuggests that “cardiovascular or cerebrovascular risk factorscould hold a key to the etiology of RLS.”

Dr. Lee received a grant from the RLS Foundation in 2013 forthe study “Subcortical white matter hyperintensities on brainmagnetic resonance imaging: a comparison between early-onsetand late-onset RLS subjects,” conducted by Dr. Lee andcolleagues Yong Wong Cho, MD, PhD (Keimyung University,South Korea), and Godfrey Pearlson, MD (Yale University).is team analyzed brain MRI scans from 21 people with late-onset RLS (onset after age 45), 18 with early-onset RLS (onsetbefore age 45), and 39 without RLS.

ey found a significantly higher grade of deep white matterhyperintensities in the late-onset RLS patients compared withthe early-onset RLS patients and age- and gender-matchedcontrols, even after adjusting for cardiovascular risk factors.

“If you compare late-onset RLS to normal, then there is asignificant hint that accumulation of white matterhyperintensities, ischemic changes in the brain, may have a rolein terms of causing RLS symptoms in late life,” says Dr. Lee.

In a second part of the study,the team used functional MRIanalysis to look for differencesin the neurocircuitry betweenearly-and late-onset RLS. Whilethe functional MRI did notreveal such differences, it didshow some differences in globalbrain connectivity betweenpatients with and without RLS,regardless of age of onset.

ese are “very intriguingfindings” and an area for furtherexploration, says Dr. Lee. Histeam is also interested inlooking for other ways thatearly-and late-onset RLS may potentially differ, such as in theprevalence of periodic limb movements or depression.

Dr. Lee entered the field of RLS research when Dr. WayneHenning, an RLS and sleep medicine pioneer, invited him tostudy racial prevalence of RLS in African- and Caucasian-Americans. Dr. Lee has since extensively studied the psychiatricand cognitive aspects of RLS.

Dr. Lee says he was drawn to RLS research from seeing patientsin the clinic. “It’s incredible how much people are suffering. Asa psychiatrist, I could see they not only had RLS, but alsopsychiatric comorbidities. I realized I had a role in elucidatingthe psychiatric aspects of RLS.”

In addition to psychological comorbidities, Dr. Lee alsohighlights the importance for patients to advocate on behalf ofthemselves. “It’s one of those conditions that doesn’t really getcaught on a physician’s radar unless they’re really looking for it.In a way, that is similar to many other diagnoses that havestigma attached to them. For whatever reason, people arereluctant to bring it up. at’s one thing I do hope, that terriblysuffering patients don’t feel uncomfortable about bringing thesesorts of complaints and symptoms to their physicians. So manypeople neglect to get treatment, though there’s plenty oftreatments available.”


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

Hochang B. Lee, MDYale University


Initial findings show hypersensitivity of specificneuron terminals in iron-deficient brainThe RLS Foundation has awarded Sergi Ferré, MD, PhD, of theNational Institute on Drug Abuse (NIDA), a $28,300 grant tocontinue his research on cortico-striatal neurons in the RLS brain.In the first phase of the Foundation-funded study, Dr. Ferré’s teamfound that these neurons were hypersensitive in iron-deficientanimals, a major step toward establishing a potential model forscreening RLS drugs.

“We are very close to developing a model for RLS drug testing,”says Dr. Ferré. “We believe that RLS involves impairment ofsensory motor integration by striatal neurons. The fact that wehave found something specific occurring in cortico-striatalterminals makes us think it’s going to be extremely relevant forRLS.”

“The beauty of this model is that now we can probably find agood explanation for a mechanism of action for some of the mostcommon drugs already being used in RLS,” explains Dr. Ferré.

In the next phase of the study, his team will refine the model anduse it to evaluate the effects of dopamine drugs such ascarbidopa/levodopa (Sinemet) and the dopamine receptoragonists (pramipexole, ropinirole and rotigotine). In addition todopaminergic agents, the research team will test alpha-2-deltaligands such as gabapentin, gabapentin enacarbil, and pregabalin.Ultimately, they hope the model can be used to screen othercompounds that can be potentially useful for RLS.

James Connor, PhD, chair of the RLS Foundation ScientificAdvisory Board, says, “This work looks really exciting andpromising. The techniques are working and generating data thatwill be informative for the iron-deficient condition in the brain,and appear to be going in a direction that will be very interestingfor RLS.”

About the study

Using a novel technique that combines optogenetics andmicrodialysis, the research team examined the communicationbetween cortico-striatal neurons in the brains of freely movinglaboratory rats. Some of the animals were made iron-deficientthrough diet. Iron deficiency is believed to be one of the majorpathogenic mechanisms of RLS.

The researchers inserted a light-activated protein into theterminals of cortico-striatal neurons, then directed a laser on thecells to trigger the release of the neurotransmitter glutamate,

which they then measured with a microdialysis probe. They foundthat the light stimulated a much greater amount of glutamate inthe iron-deficient animals than in the controls.

According to Dr. Ferré, with this finding scientists can now lookfor ways to reverse or prevent the release of glutamate, and see ifthis alleviates RLS symptoms. “Those terminals are a specificplace where we have now seen biomedical effects that only occurin this animal model of RLS (an iron deficient brain),” he says.“We can not only check drugs, but also continue to study thisactivity in search of an explanation for why some drugs currentlyavailable work for treating RLS.”

“If we validate our model, by obtaining positive results with thedopamine drugs and alpha-2-delta calcium channel ligands, wemight have found a key mechanism that is involved in thesymptomology of RLS,” says Dr. Ferré.

About Sergi Ferré

Dr. Sergi Ferré is a principal investigator at the National Instituteon Drug Abuse. His main research interest is clarifying thefunctional role of receptor heteromers in the brain as well as theirpotential use as targets for drug development in neuropsychiatricdisorders and drug addiction.

Dr. Ferré says his interest in RLS research began with a phone callfrom Dr. Christopher Earley of Johns Hopkins, who invited himto collaborate on a project involving the interactions betweendopamine receptors and adenosine in RLS. They have sincecompleted this work, a significant contribution to the field ofneuroscience.


RLS Foundation Awards Grant to Dr. Sergi Ferre forContinued Research on RLS Animal Model

Pictured, from left to right, are Sergi Ferré, MD, PhD; César Quiroz, PhD;Gabriel Yepes, Xavier Guitart, PhD; Jordi Bonaventura, PhD; Marta Sánchez-Soto, MS; Ning-Sheng Cai, PhD; William Rea, MA; and Hideaki Yano, PhD.

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RLS is common during pregnancy – at least one in five pregnantwomen experience symptoms. For women who did not have RLSbefore their pregnancy, symptoms usually start during the thirdtrimester (last three months of pregnancy) and subside within amonth after delivery.

For the first time, healthcare providers have clear guidance on howto recognize and treat RLS in patients who are pregnant orbreastfeeding. Published in the November 2014 issue of SleepMedicine Reviews, an international consensus statement offersin-depth guidelines on diagnosing RLS and managing symptomsduring pregnancy and lactation.

e consensus guidelines were developed by a nine-membermultidisciplinary committee and sponsored by the InternationalRLS Study Group (IRLSSG). Over a three-year period, thecommittee used a consensus process to examine findings in themedical literature and develop recommendations that were laterapproved by IRLSSG members and the RLS Foundation MedicalAdvisory Board (MAB).

Committee co-chair Daniel Picchietti, MD, calls RLS an “unwelcomevisitor in the night” for many expectant mothers. “Especially in thethird trimester when they’re trying to maintain health, trying to sleep,pregnant women experience the intrusion of RLS. It’s important tohave recommendations to apply in this common clinical situation.Nothing like this previously existed.”

Committee co-chair Jennifer Hensley, EdD, CNM, WHNP, saysmany women mistakenly believe their RLS symptoms are normalfor pregnancy, or they are reluctant to mention symptoms to theirproviders. “Pregnancy and lactation are both vulnerable times, as noprovider wants to suggest any treatment that may harm the motheror developing fetus. e guidelines are essential so that pregnantwomen affected by intermittent or severe RLS can talk with theirproviders about safe choices for treatment.”

While it is not known why so many women experience RLS duringpregnancy, low iron levels are believed to play a role. During laterstages of pregnancy, iron stores in the mother drop by around 50percent to supply the fetus with iron it will need to survive outsidethe womb. Other factors that may contribute to RLS symptomsinclude the changing hormone levels women experience duringpregnancy.

e consensus guidelines discuss treatment options at various RLSseverity levels and stages of pregnancy. Nondrug treatments arealways the first choice. For example, women may benefit frommoderate-intensity exercise, massage, or avoidance of common RLStriggers. All pregnant women with RLS should have their iron levels

checked to see if iron supplementationis needed.

Medications are recommended only ifnondrug treatments are ineffective andshould be taken in the lowest dose and forthe shortest time possible. e guidelinesalso point to the need for further researchin areas such as genetics, safety of RLSmedications, and the possible negativeimpact of RLS on the health of the motheror fetus. Dr. Picchietti says, “Even thoughwe have guidelines, there is still a lot we don’tknow about this. ere is some worrisomeevidence that this can have a negative impacton pregnancies. We need to know if that’strue, and if so, what we can do about it.”

e article “Consensus clinical practiceguidelines for the diagnosis and treatment ofrestless legs syndrome / Willis-Ekbomdisease during pregnancy and lactation” isavailable at www.journals.elsevier.com/sleep-medicine-reviews.

Other members of the consensus committeeinclude RLS Foundation Board of DirectorsChair Jacquelyn Bainbridge, PharmD; MABand SAB members Mauro Manconi, MD, PhD, ClaudiaTrenkwalder, MD, and Arthur S. Walters, MD; and Kathryn A. Lee,MD; James A. McGregor, MD; and Robert M. Silver, MD. ____________________________________________________

Key Points about Pregnancy and RLS:1. About one in five women experience RLS during pregnancy.

Pregnant women should be on the lookout for symptoms, especially during the last three months of pregnancy.

2. Symptoms usually get better after delivery.3. Pregnant women who have RLS should have their iron levels

checked and be evaluated by their healthcare providers to see if they may need iron supplements.

4. Women can take steps to lessen their symptoms, such as avoiding common RLS triggers and engaging in moderate-intensity exercise (as directed by their healthcare providers).

5. If nondrug strategies are not sufficient to manage RLS symptoms, then medications can be considered.

6. Women with RLS who are considering getting pregnant should have their iron levels checked to see if they should take iron supplements before pregnancy to build up their iron stores.Note: Iron supplements should be taken only under the supervision and monitoring of a physician to avoid serious complications.

2015 Highlights I Improve Treatments

Consensus Guidelines Published for Treating RLSDuring Pregnancy and Lactation

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Daniel Picchietti, MDCarle Foundation Hospital

Jennifer Hensley,EdD, CNM, WHNPUniversity of Colorado


The RLS Foundation certified three new RLS Quality CareCenters in 2015, bringing our total number of centers to seven.The newest centers are Emory Clinic Sleep Center, HoustonMethodist Neurological Institute and Yale Centers for RestlessLegs Syndrome.

The RLS Foundation has established the RLS Quality CareCenter Program to improve diagnosis and treatment of thedisease. Provider certification requires a high level of expertiseand experience in the treatment of RLS patients.

RLS Quality Care Centers are destinations for patients insearch of knowledgable healthcare providers. In addition,centers serve as a resource for referring primary care providersand regional support groups. Through the Foundation’sprogram, these providers will collaborate to raise the quality ofcare for all patients with RLS.

“We are so pleased to have these distinguished providers join theQuality Care Center network,” says RLS Foundation executivedirector Karla Dzienkowski. “As this network grows, we areexpanding the reach of outstanding RLS clinicians to patientswho are in desperate need of their expertise.”

Quality Care Centers are staffed by providers who offer expertcare and specialized disease management to RLS patients. Toachieve certification, Centers are rigorously reviewed by the RLSFoundation Medical Advisory Board and must demonstrate ahigh level of expertise and experience in treating the disease.

e Foundation established the RLS Quality Care Centernetwork in 2013 to improve diagnosis and treatment of RLS.rough education, sharing of best practices and qualityimprovement projects, the program aims to improve the qualityof healthcare for all people living with RLS.

To learn more about the RLS Quality Care Center network, visitwww.rls.org/qcc-directory.

Emory Clinic Sleep Center 12 Executive Park Drive, NE • Atlanta, GA, 30329404-712-7533www.emoryhealthcare.org/sleep

Certified healthcare providers Lynn Marie Trotti, MD, MScDavid Rye, MD, PhDDonald Bliwise, PhD

Houston Methodist Neurological Institute6560 Fannin Street, Suite 1002 • Houston, TX 77030713-363-7077www.houstonmethodist.org/neurology/locations/texas-medical-centerCertified healthcare provider William G. Ondo, MD

Yale Centers for Restless Legs Syndrome203-287-3550 • www.ynhh.org/services/sleep-center

Two locations:8 Devine Street • North Haven, CT 06473

Certified healthcare providers Brian Koo, MD, QCC DirectorDuarte Machado, MD

Yale Centers for Sleep Medicine800 Howard Avenue, Lower Level • New Haven, CT 06519

Certified healthcare providers Hochang “Ben” Lee, MDVahid Mohsenin, MD


Foundation Certifies Three RLS Quality Care Centers


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Surgery and Hospitalization for WED/RLS PatientsSpeaker: Arthur S. Walters, MDApril 13, 2015

Basics of RLSSpeaker: Michael H. Silber, MB, ChBMay 28, 2015

Drug HolidaySpeaker: Christopher J. Earley, MB, BCh, PhDJuly 16, 2015

Suffering from Augmentation: What You Can Do About ItSpeaker: John W. Winkelman, MD, PhDAugust 26, 2015

Drug Interactions and RLSSpeaker: Jacqueline Bainbridge, PharmD, FCCPSeptember 8, 2015

What's New in RLS ResearchSpeaker: Lynn Marie Trotti, MD, MScOctober 28, 2015

Sleep Study: What’s It All About?Speaker: Brian Koo, MDNovember 4, 2015

RLS Triggers and Coping StrategiesSpeaker: Norma Cuellar, PhD, RN, FAANDecember 8, 2015

2015 Highlights I Increase Awareness

2015 Webinar Series

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Young people with RLS have unique challenges. Over and abovethe physical and social changes of the teen years, kids with RLSneed to cope with their RLS symptoms, sleep deprivation,medication side effects, and other difficulties related to living witha chronic illness.

To help youth meet these challenges, the RLS Foundation hascreated the RLS Guide for Teens. is guide is designed to helpteens with RLS take control of their lives as they transition intoadulthood, says RLS Foundation Executive Director KarlaDzienkowski. “e teen years are a great time of life for kids topractice advocating for themselves. is is the most importantthing we can do as parents, teachers and friends – to helpteenagers take this monumental step into independence.”

e RLS Guide for Teens is the first RLS publication gearedspecifically toward youth. e 14-page booklet includes acomprehensive overview of RLS basics – triggers, copingstrategies, good sleep habits and more – in a user-friendly layout.It also addresses important topics like how to empower oneselfwith knowledge and how to talk about RLS with friends.

Parents will find the guide a useful tool to start a conversationwith teachers and others about how they can help their child findthe right accommodations to thrive socially and academically.

e booklet was developed by a team that includes RLSFoundation staff members; Medical Advisory Board membersSuresh Kotagal, MD, and Daniel Picchietti, MD; and RLSFoundation Board secretary Linda R. Secretan. is work is anoutcome of the RLS Foundation’s Hearing Children’s Voicesprogram, made possible by a grant from the RivendellFoundation.

For a copy of the RLS Guide for Teens, visit the Members Onlypage of www.rls.org. Print copies are also available on requestfrom the RLS Foundation by email at [email protected] or by calling512-366-9109.

You’re the oneinside your skin.Get comfortablethere. It’s goingto be your homefor a long timeto come.— from RLS Guide for Teens

New Booklet Helps Teens Living with RLS


Ekbom Heritage SocietyAnonymous (4)Ms. Alejandra C. Arboles ZapataMs. Frances Baum KaplanSteve and Kay BordiPeter K. BrooksMarilyn and Fredrick ButterfieldSheila and Frank ConnollyMr. George S. DuncanJohn E. Farmer, DOMr. Charles FehnerMs. Ann Marie FritzJanice FrostPickett M. GuthrieAnne W. HammondMrs. Jean M. HandwerkJanice and Larry HoffmannGwen HowlettMr. John P. JanssonHoward R. KahnJudith A. KotarMs. Elizabeth LaipsonJohn F. MeredithWalter W. Murrell, PhDDorothy J. Quisenberry, PhDGeorge M. SalemMs. Shirley SiumaGene SivertsonMs. Kathrin W. Young

Leaders($10,000 or more)Michael Brownstein MD PhD via

Brownstein Family FoundationMr. and Mrs. Tom DunaganCarolyn MohnOshkosh CorporationMr. Joseph R. Portmann III via

The Portmann Family Charitable FundBob and Judy Waterman via

San Francisco FoundationXenoPort, Inc.

Benefactors($5,000 to $9,999)AnonymousRon and Sharon BarrettPeter and Incy BrooksThe Dzienkowski FamilyEstate of Mrs. Beulah FeurerMrs. Sherrie FrankelRobert and Pickett GuthrieIndependent Charities of America - CFCGregory C. OberlandMr. & Mrs. E. Randall SmolikPeggy Walker-ConnerMr. Frank M. Wilson III

Patrons($2,500 to $4,999)Mr. and Mrs. James AbererMs. Ann S. AlspaughNorean and R. Chad DreierEdmund Wattis Littlefield, Jr.Lloyd D. MathisM. Lynn McCrackenMr. Rex E. McCraryMr. and Mrs. PaulUCB, Inc.

Sponsors($1,000 to $2,499)Anonymous (3)Carolyn C. AcheeMrs. Barbara BereMrs. Kay BowersMrs. Lida R. BrownRuss & Janet BuschertChevronTexaco Matching Gift Program

Lisa & Erik CressmanJ. Hunt DowningMs. Elizabeth DunnJames B. FullertonSeth GlogowerMr. W. George GrandisonMrs. Rhondda L. GrantMrs. Gail GrimMr. Carl F. Hagenmaier Jr.Jeff and Pam HarmsMr. Dean HoudeshelMrs. Annette S. HunterEd and Roberta KittredgeMr. Kevin KohagenLeon and Dina KrainMr. and Mrs. J Terry ManningMs. Jacqueline C. MorbyStarla PhelpsMrs. Gisela M. RiggleMr. Robert H. RitterbushMr. Dennis C. SmithMr. Freeman H. SmithMrs. Cindy D. TaylorMrs. Alletta R. ThompsonRobin TostMichael J. Zigmond PhD

Sustainers($250 to $999)Anonymous (12)Evelyn D. AndersonMr. John ArensDrs. Jacquelyn and Scott BainbridgeKent BellMr. Bart BolwynMr. Jeffrey BorofskyMrs. Dorothy E. BrooksMr. E. Jeffrey BurkeMarilyn ButterfieldMs. Susanne CampbellMs. Felicia M. CashinCaroline ChamalesMs. Barbara E. ClucasLee C CoatesDr. Carol L. ColbyMs. Barbara ConitsDr. and Mrs. James R. ConnorLewis N. CorringtonMrs. Jo DalySamuel D'Amato, MDMichael DavisWalter C. DavisMr. and Mrs. Karl F. DietzelElizabeth DirkxMs. Jodi DoreAnne B. DorseyHelen DrewettMrs. Wanda DzienkowskiMs. Deanne EbelherrMr. and Mrs. Louis Echavarria Jr.Mr. Peter EdwardsBarbara A. FaraoneMs. Beth FischerMr. Ted ForemanJune M. Fry MD, PhDMrs. Marcella GallagherMr. W. Peyton GeorgeVera M. GerhardtMrs. Ruth H. GillisMs. Nina GlasnerMs. Lucille GleddieMr. Doren GoldstoneMr. Wayne GregoryMr. Ron HaedtMs. Kay I. HallDr. and Mrs. Matthew R. HarmodyMs. Kimberly HarrisMr. Roland W. Hart

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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 two areas:education and research. Donations to these funds areearmarked for special projects that may complementyour 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 $101 to $249Friends $75 to $100Contributors $1 to $74

2015 Highlights I Increase Awareness

10 11 www.rls.org


Thomas HartzogMrs. Lynn HawthorneMonica J. HermanDr. Arthur M. HewittMs. Sara L. HeydariJanice and Larry HoffmannMs. Julie S. HorowitzMs. Isabella W. HorskyMr. Stephen IserMr. and Mrs. James R. JohnsonMichael J. KiktaMs. Doreen KimMs. Nancy M. KindnessDr. Marvin KleinauMs. Marie A. KrauszDr. Regis LangelierMr. Walter LangfordMrs. Betty LaphamAnne W. LauerMr. Scott R. LevadMrs. Lee LipmanLorinna W. LowranceColin MacKenzieMs. Susan MalloryMr. Frank E. ManchesterMary Helen ManningMr. Charles MarcousAnna Grassini and John McDevittDorothy McGinnisMarney MeschEric MoenMrs. Diane P. MoyerRoger MulvihillPhaedra Neely, ARCB CertifiedMs. Nancy S. PassananteMarika Pauls Laucht and Donny CheungMrs. Donna PayneProf. Robert J. PeroniMrs. Carolyn PhillipsMr. Perry PlankMs. Lisa A. PughMr. Brian RedfernMr. and Mrs. Daryl W. ReidMrs. Diane M. ReinhartProf. Victor H. RieckMr. Lawrence RockwoodMr. David T. SandsMs. Sonnhilde SaundersMr. LeRoy SaylorMrs. Elizabeth O. SchebenLori SchifrinJan SchneiderMs. Donna M. SchroederMr. John SchwagerMs. Mary SchwartzLinda SecretanMr. and Mrs. F R. SekowskiMr. Benjamin SenauerKay SimmonsGene SivertsonDwain L. Smith DVMMr. Edward SmithMr. Jeffrey W. SmithMr. and Mrs. Stephen N. Smith PEWalter SmithMr. Robert E. SpanglerSherrill SpearsCmdr. Daru StevensMr. Jack StoneHelen W. SutphenJanice J. TaylorMr. and Mrs. John ThieleMr. Grant P. ThompsonMr. Tim ThorntonMrs. Linda TopperMrs. Jane TrillerMr. and Mrs. James T. TrollingerMr. Thomas E. Turk Jr.

United Way of Central MarylandMary VehrenkampMrs. Wendy VeigaVillage EmporiumMarguerite H. WagnerChristine Tunison WaitLaura WalkerMr. and Mrs. Cal WalstraArthur S. Walters, MDMrs. Shirley M. WareLeah R. WickhamJohn B. WilliamsMs. Toby WoodhouseMrs. Bonnie B. YelvertonMr. Dean ZarrasDonna Zimmerschied

Supporters($101 to $249)Anonymous (33)Mrs. Marianne AbruzziAKM, LLCHank S. AldrichSerena AllemanJanet L. AllisMs. Bootsie AlpertGayle V. AndersonMr. & Mrs. Leland E. AndersonMs. Barbara AndreasonMrs. Roberta ArmacostMs. Dorothy ArmstrongLarry ArndtMs. Carole S. ArthurRichard C Austin, MDMs. Judith F. AydelottMr. Donald N. BabbMr. Wilmer BaheMr. Robert R. BarkerJohn Barrall Jr and Rita NevidMs. Agnes R. BarrettJitendra K. Baruah, MDJoe & Betty BeardMrs. Catherine K. BeckerPhilip M. Becker, MDMrs. Brenda BelangerStephen BelangerLois E. BelohlavekMrs. Maralene BergmanBarbara BerrierMr. Warren BerthelotMs. Shirley BevanElizabeth L. BewleyMrs. Paige BirdMr. John P. BlackMs. Sybil J. BlankenshipBlessey Marine ServicesMs. Amy Jean BoebelInez BoettcherMr. George F. BoneGary J. BoosMrs. Leah BoudreauxMr. Ward C BournDr. Richard L. BowenMrs. Sally H. BowenMs. Sandra C. BowenCarolyn P. BowerDr. Dolores A. BowerMr. John BowmanNancy BradfordThelma BradtBratco Operating Company, Inc.Brecheen Pipe and SteelMr. Bruce BredlandMs. Carol BrettaArnold BrewerMs. Betty M. BrockingtonMiss Jane BrownLucy L. Brown

Mr. Robert BruggerMr. Roger BulgrenMargee BurkeMs. Kim BurnettMr. Richard C. BurtonNorma C. ButlerMs. Florence A. CaldwellMs. Leatrice CaldwellMs. Bonnie CampbellMr. Al CapitaniniGregory S. Carter, MD, PhDMs. Mary Lou CaseMr. Joseph CastellanoGerard CastryMrs. Bonnie CavanaughMrs. Kitty ChamplinMs. Barbara J. ChandlerMrs. Florence A. ChandlerMr. Mark ChesnutLaura E. ChildersSudhansu Chokroverty, MDLynnae ChristiansonThomas A. ChurchillMr. Ron CicchiniMrs. Paula A. ClarkViola K. ClemisMrs. Janet E. ClischArnold and Annebelle CohenHarold L. CohenMs. Sara ColemanMrs. Rei M. CollingMrs. Elda CostiganMs. Suzanne CovertMrs. Dorothy B. CowlesMs. Carol L. CoxMr. Roger CrooksMrs. Lois M. CrouchMrs. Dorothy CummingsMs. Marie CurtisMs. Arwilda CushmanSusan DabelsteenMs. Sherry L. DagnallPastor Bruce H. DavidsonMrs. Patricia DavisMs. Suzayne W. DavisMr. Don R. Deabenderfer Jr.Mrs. Sandy S. DeCourseyDr. Edward T. DehanMr. Thomas P. DeMundMr. Robert L. DePorter Esq.Ms. Helle K. DeSimoneMs. Mindy DillR. C. Dillihunt, MDMr. Wesley DoakMary DobrowolskiNonda DonovanRobert L. DorfmanKatharine L. DownhamJoanne Drewsen and Alan DrewsenMrs. Ursula Du FresneMs. Mary Lee DuffMs. Georgia Duker, PhDMrs. Susan EckersJean K. EckertDr. John A. EdwardsTim EkdomSherif El Bayadi, MDMs. Joanie ElderMr. Doug EllVashti P. ElliottMr. Jim EmswilerVirginia G. EnglandMs. Janice EwasiwRichard EzellMs. Win FarquharMr. Al H. FerberMr. Stefan FeyenMrs. Mozelle N. Filimon

Mrs. Dolores FiolaMr. Eugene FirmineMs. Marguerite FischerMr. Harold M. FisherDon and Carol FlammerMr. and Mrs. John M. FlatleyEmmett FloreaElmer G. FoleyMs. Kaye Forrest BrownMs. Jacquie FossMs. Kathleen FosterMr. Robert FowlerMrs. Evelyn FranceMrs. Korinne FrankMr. Alan FreestoneMrs. Andrea FriedeJanice H. FrizzellMrs. Mastern FullerSylvia R. GallagherMs. Ana Maria GarciaMr. Thomas GardnerSam GarwoodIrma GawboyMr. Peter GerameMs. Judy L. GerardiKenneth E. GermanDelores M. GildeaMs. Debbie GillMrs. Carol A. GillardMs. Margaret GillisMr. George M. GingerelliMr. Alan GlassMs. Sheilah GloverMs. Charlotte B. GoddinMr. John GodfreyMs. Lyn GoertzenMs. Pat GolabDorothy D. GoldstickDr. Joseph GoldstonBeatrice H. GoldstoneMs. Violet GongMr. Kenneth Goodson Jr.In Memory of Janet G. GoreckiDr. Elaine GorhamLeni GottliebMr. Charles C. GouldRicki GrantmyreMs. Sabrina GreenseaDr. Betty L. GreenwayLt. Col. (Ret) Alan GregoryCathryn S. GregoryDr. William GriffethMr. Everett J. GrindstaffMr. Albert GuayMr. Timothy GuirlJames A. GuldanMs. Wanda R. GuytonMr. Douglas E. HaasDr. Judith HallMadith K. HamiltonEvelyn HarperMs. Alexandra HarrisDr. Roy D. HarrisGeorgia G. HartMs. Margaret L. HarveyMr. James HatcherMs. Carole HattonDr. Jerald HattonBettye J. HauserJim HealeyMrs. Judy K. HeckmanMs. Sybil Ann HeimJames HeinzMr. Stephen HendersonMrs. Dolores HermannMrs. Renee J. HermansonMs. Lynne Herndon

continued on page 13

continued from page 11

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P. L. HerronDr. Susan HetheringtonMr. John D. HimmelfarbMs. Barbara HirschyMrs. Delpha A. HirthMr. Lloyd HittleMrs. Judith HoffmanMr. David W. HoganMr. Ron R. HoppertonJohn T. Hubbard Jr.Ms. Margaret T. HuddyJoan HudginsMary L. HuntMr. Richard HuntPeter and Marcia HunterMs. Susan HunterThomas D Hurwitz, MDNancy E. HusseyBetty L. HutchinsJean H. HutchinsMrs. Marjorie G. HutchisonJacquelyn C. HutsonMs. Janet HutsulakLucille L. HynesMrs. June E. ImmelMs. Kathleen JefferisMs. Katherine L. JenkinsMr. David J. JohnstonMs. Priscilla JosephMs. Glenda JutsonMrs. Georgia KahlerMr. Glenn KalisiakMr. Garry J. KearnsMr. Donnie KeeMrs. Sarah P. KellenMr. Jayson KendrickMrs. Renate F. KhambattaMr. Mike KirbyMrs. Jeanne KissackMs. Janet M. KluweJean & Ed KnappLt. Col. (Ret) Paul B. KnutsonKathleen KotchiStewart KrakoverDiane KuehnMrs. Judith KuenzliMr. Michael KunMrs. Faye G. KunzeMr. John M. LaFeverMs. Anne LampeCynthia LandgrebeLinda K. LandisMr. and Mrs. Brian LangevinMs. Kim LarrowMs. Julia LathropMs. Nancy LaubyMs. Edith LavinMs. Catherine LawsonMs. Marie LeBlancDavid M. LeeMs. Brenda LeibelMs. Patricia A. LeighfieldMr. and Mrs. James F. LeisingMrs. Mary LeonhardtWill LewisYuqing Li, MDMs. Jeanne LiebigJoyce LifshinMs. Vivien LindseyMs. Mary ListerDorothy ListonMs. Martha P. LittlefieldMs. Laszlo LovrekovichMs. Mary Ann LucasNordis LuxembourgBarbara MackMr. Tom MainCmdr. John O. Makinson

Mrs. Saida S. MalarneyMr. William P. MaloneyMr. John O. ManningMs. Christina MarciniakMr. P. Severin MarstedMr. David MartensMr. Keith MartindaleMary F. MasonMs. Patricia MasonMs. Marcia MatthieuMs. Alice J. MaxinKevin B. May, CPANoel MayeMartha McCallMr. Jerry R. McCaslinMrs. Buffy McClurePark McGintyMr. Robert McIntyreLinda McKennaMr. Howard McNallyMs. Lisa L. McPhersonMs. Karen MealyAnn M. MelansonMichael T MendelsonMrs. Beth MenefeeMr. Charles J. MillerKenneth J. MillerMs. Denise MillmanMrs. Ida R. MinorMr. Darius MistryJudy C. MonostoryDr. William MontgomeryMrs. Doria MoodieMr. Jonathan T. MooreSusan Moore VaultMs. Silver Moore-LeamonSteve MortonMrs. Susan G. MossMr. Charles MoyerMs. Freya MuellerMrs. Janet B. MurrayDr. Walter W. MurrellMr. Saul NathansonMrs. Joan NazifTheresa NelsonMr. Arlo R. NordMs. Barbara S. NorthKeith and Bonnie NoyesProf. Taneyoshi NozawaJoan O'BrienMs. Carol M. OgrodnikHelen C. OlsonRev. James B. & Linda M. OlsonEdward OrtlebMs. Maura O'TooleKatheryn OvermanLt. Col and Mrs. Tarlton F. ParsonsMs. Christine L. PatsosMr. Robert PattersonMs. Maria PaulMs. Cynthia PearsonMr. Thomas N. Pearson Sr.Mr. Rich PelikanMs. Judy PennimanMs. Eleanor S. PerkinsDonald L. PerryJoyce PerryJustine A. Petrie, MDGail L. PickeringMs. Jennifer PierceMr. Stephen PlattusMr. Doug PoadMs. Patricia PomervilleMr. Christopher PowellJacquie PowellJoan PowersMrs. Elizabeth PurcellMr. Mark Quinton

Mrs. Jeanne RaganMs. Barbara J. RaglandMs. Norma L. Raines, RNEmily Rand BreitnerMrs. Peter L. RandlevAnne RappMs. Mara RasureMr. Walter H. RauserCarey RayceMrs. Martha H. Rediehs, RN, MSNMarcia ReedSusan ReedJohn RhodesMrs. Linda RichterMr. Johnnie RickettsMrs. Barbara RileyCarol RobertsKelyn RobertsAnn RobertsonJean RobertsonMs. Laura C. RobinsonMr. Rafael RodriguezMr. William RogersMr. Alan RoloffRich RosenthalMs. Virginia RothMr. Bruce RubleMs. Mary A. RuppenthalDonald L. RyanMrs. Shirley L. SchaplerMs. Helen T. SchauerMs. Nancy SchmidtMs. Sonia SchneiderMs. JoAnn E. SchoeneggeMr. and Mrs. Roger C. SchulteDr. Fred SchwingSusan ScottCarol J. SeelyRosewitha SeltzMr. Donald SemrauSpencer O. SetterShirley I. SeymourDr. David S. ShaferHarry ShaiaMrs. Louise SharpMs. Bonnie ShearMs. Marcie SheltonMs. Sylvia ShieldsMs. Jane ShigleyMichael H. Silber, MB, ChBMr. Ronald SilverstriMr. Michael SimkoMrs. Velma SkinnerDr and Mrs. Richard Douglas SlackMr. Patrick L. SlotaFrances Cain SloteMr. James F. SmithMr. Michael SmithMr. and Mrs. Michael K. SmithMuriel H. SmithPreston L. SmithStephen D. Smith, MDMr. Dirk SoutendijkMs. Beula J. SpellMrs. Hannelore M. SpenceMs. Susan SpenglerMrs. Joyce C. SpiveyRev. Louis O. SpringsteenMr. C. Kermit Spruill Jr.Ms. Marilyn StapletonMs. Holly StedmanMs. Jacqueline N. SteensmaMrs. Faye M. StephenMr. Chris StewardMs. Nancy L. StineConstance StonerDoris B. StretchMs. Judy Sutton

Mr. William K. SwansonMarian W. SweeneyMs. Susan SwigartMs. Janelle R. Tallent-VotawHarry C. TaylorMr. Frank TerlouwSusan TheissMs. Marjorie TobeyMrs. Shirley S. ToothmanMrs. Charlene TravelsteadMrs. Marsha P. TuohyMr. David A. TuomalaH. M. TurekMr. Jack E. TurnerMr. T Michael UlwellingMs. Elizabeth K. UsinaMs. Valerie Van EttenMrs. Cynthia M. Van HorneMr. Gary W. Van LiewMs. Jackie VasquezMs. Patricia VeuveMr. Jerry VulstekJohn M. WadaharaMr. John G. WaddellKaren WalbornGordon WaldronJan F. Walsh, DVMNora L. WalterMr. and Mrs. Glenn D. WaltersMs. Kay-Frances WardropeMr. Bill WarfelMr. Jim B. WaterfieldElizabeth (Betty) WeberKit WeinschenkMr. Ron J. WeisbergMr. David W. WeissMs. Marilyn J. WelchnerMr. and Mrs. Eugene WendtMs. Susan WerthemMr. Barry WestonMargaret B. WheatMr. Stephen WhiteMs. Allison Whitney-ColemanMr. and Mrs. Woody B. WidlundMr. Clifford WiitaMs. Carolyn WilcoxMs. Laurena WilliamsMs. Jean WimerMs. Lynsey WinnerMs. Anne M. WinterhalderMr. Jerome WitekMr. Paul WitkowskiMs. Lila WittMr. Eduard WojczynskiLucy H. WongDiane WoodMr. Gordon WoodardMr. Cody WrayGail WrightMrs. Linda WyattPaul E. Wylie, MDMr. Des WytmansMs. Lois YarborMs. Joanell ZimmermanBarbara ZizkaMr. Arthur W. Zuhlke

Thank You!

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1514www.rls.org

Thank you for your continued financial support and commitment to the RLSFoundation during our fiscal year 2015. Individual donors provided themajority of support for RLS Foundation programs and activities, representingover 87% of donations collected.

Our popular monthly webinar series, support group meetings and educationalmaterials served to educate the general public and medical community aboutRLS. Our website and social media channels, including Facebook, Twitter andLinkedIn, experienced an overall increase in traffic thereby fulfilling ourmission to bring greater education and awareness. Two promising researchprojects were funded in 2015 through the RLS Foundation Research GrantProgram. The addition of three new RLS Quality Care Centers provide individualsliving with RLS access to care from leading RLS experts. Together, these programsfulfill our goals of finding better treatments and a cure for RLS.

The RLS Foundation Finance and Audit Committee monitors revenue andexpenditures to ensure they are in balance and reviews forecasts for the upcomingfiscal year. The board of directors provides financial oversight for the organizationby ensuring monies are spent in programs beneficial to the members of the RLScommunity. Management states that due to reclassifications of accounts in order tocomply with GAAP, figures reported in 2015 are not directly comparable to thosereported in prior years.

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

It has been my pleasure to serve as Treasurer of the RLS Foundation Board ofDirectors. I look forward to my tenure as Board Chair in 2016.

Sincerely,

Lewis M. PhelpsVice Chair and Treasurer

Financial Report

Lewis PhelpsVice Chair and Treasurer


15 www.rls.org

Restless Legs Syndrome FoundationStatement of Financial Position • September 30, 2015

Assets 2015Cash and cash equivalents $ 153,124Investments 397,430Contributions receivable 16,000Prepaid and accrued assests 3,274

Total assets $ 569,828

LiabilitiesAccounts payable and accrued expenses $ 35,392

Total liabilities $ 35,392

Net AssetsUnrestricted $ 300,879Temporarily restricted 233,557

Total net assets 534,436Total liabilities and net assets $ 569,828

Statements of Activities • For year ending September 30, 2015

Income 2015Contributions (unrestricted) $ 351,466 Membership 1 105,130Temp. restricted contributions 1 168,894 Investment income 23,490Miscellanous income (16,097)Unrealized gain (loss) on investments (44,292)

Total income $ 588,591

ExpensesPrograms

Education and awareness $ 298,423Membership 152,901 Research 31,650Support groups 7,076

Total program expenses 490,050General and administrative 1 69,871Fundraising 113,792

Total expenses 673,713

Net increase in net assets $ (85,122)

2015 Revenues

Unrestricted contributions 60%Temp. restricted contributions 29%Membership 18%Investment return 4%Unrealized gain (loss) on investments (8%)Miscellaneous income (loss) (3%)

Education and awareness 44%Membership 23%Research 5%Support groups 1%General and administrative 10%Fundraising 17%

2015 Expenses

14


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