ms connection - spring 2010

Bike MSWhy We Ride in Wisconsin’s Best Dam Bike Ride

Spring 2010

The pace of progress toward creating a world free of MS is gaining momentum. Take a look:

• Ampyra,thefirstsymptommanagement drug,wasrecentlyapprovedbytheFDA. Ithasbeendemonstratedtoimprove walkingabilityinmanypeoplewithMS.• Twooraldisease-modifyingdrugsareontheimmediate horizon,withFDAapprovalanticipatedlaterthisyear.• Potentialtherapiesfornerveprotectionareinclinicaltrial, andtrialsfornerverepairareclosebehind.Asyouknow, someofthisamazingworkistakingplaceinWisconsin; asDr.IanDuncan’steaminMadisoncontinuesto collaboratewithaninternationalgroupofresearchers tacklingwhatonlyafewshortyearsagowasbelievedto beimprobable.• TheSocietyisexpeditingfurtherexplorationofCCSVI (chroniccerebrospinalvenousinsufficiency),todetermine ifthisfindingmayleadtonewtreatmentsforpeople withMS.

Closertohome,Dr.JohnFleming’sintriguingwormeggstudyisenteringasecondexcitingphase.Asyou’llreadonthefollowingpages;Dr.FlemingbelieveshisresearchmaynotonlybenefitindividualswithMS,butpossiblythosewithotherautoimmunediseases. Remember:YOUmakethispossible.Yourfundraisingeffortsandyourvoicesfuelthisgrassrootsorganization.That’sneverbeenmoreapparentthanintheconversationsaboutCCSVI.Morethan4,000viewedtherecentCCSVIwebcast;co-sponsoredbytheSocietyandtheAmericanAcademyofNeurology(you’llfindatranscriptandrecordingoftheprogramatnationalmssociety.org). Becauseofyourefforts,MSresearchismovingforwardfasterthaneverbefore.Perhapsthat’stobeexpected.Youare,afterall,themovementtoendMS.

Sincerely,

ColleenG.KaltPresident&CEO

If you or someone you know has MS:StudiesshowthatearlyandongoingtreatmentwithanFDA-approvedtherapycanreducefuturediseaseactivityandimprovequalityoflifeformanypeoplewithmultiplesclerosis.TalktoyourhealthcareprofessionalorcontacttheNationalMSSocietyatnationalmssociety.org or 1-800-344-4867 tolearnaboutwaystohelpmanagemultiplesclerosisandaboutcurrentresearchthatmayonedayrevealacure.TheNationalMSSocietydoesnotendorseproducts,servicesormanufacturers.Suchnamesappearheresolelybecausetheyareconsideredvaluableinformation.TheNationalMSSocietyassumesnoliabilityfortheuseofcontentsofanyproductorservicementioned.InformationprovidedbytheSocietyisbaseduponprofessionaladvice,published,experienceandexpertopinion.Informationprovidedinresponsetoquestionsdoesnotconstitutetherapeuticrecommendationsorprescriptions.TheNationalMSSocietyrecommendsthatallquestionsandinformationbediscussedwithapersonalphysician.The National MS Society is committed to seeing a world free of MS.

©2010NationalMultipleSclerosisSociety-WisconsinChapter

2 JOIN THE MOVEMENT: wisMS.org MS CONNECTION: Winter 2010

AlysonZierdt,ChairAttorney, Retired MartinMcLaughlin,PastChairReinhart Boerner Van Deuren, S.C.

MichaelLutze,ViceChairErnst & Young KennethMinor,ViceChairSonic Foundry, Inc.

RobertSowinski,SecretaryDiversified Insurance Services, Inc.

DavidRodgers,TreasurerBriggs & Stratton Corporation

ColleenKalt,President&CEONational MS Society - Wisconsin Chapter CarrieRaymondBedoreCarrie Raymond Bedore, LLC

RobertBuhlerOpen Pantry Food Marts of Wisconsin, Inc AlbertC.ElserIICommunity Advocate RobertEngelRetired, M&I Bank

TomGoldenM3 Insurance Solutions for Business

KarenMinorCommunity Advocate BruceOlsonThe Marcus Corporation ShelleyPetermanSchwarzMeeting Life’s Challenges

DavidRaysichPlunkett Raysich Architects

PatriciaRaysichCommunity Advocate

JamesRoseBaker Tilly Virchow Krause LLP

JeffreySterenSteren Management/McDonald’s

RobynTurtenwaldCommunity Advocate

MollyWalshOffice of Governor Jim Doyle

Wisconsin Board of Trustees You Push the Pace of Research Progress

3TOLL FREE NUMBER 1 800 242 3358

First Phase Tested SafetyFleming’s Worm Egg Research Entering Second PhaseBy Amanda Gasper

Notmanypeoplewouldthinkaboutdrinkingwormeggs.Butthat’swhatfiveMSpatientsdidduringtheinitialphaseofastudytoevaluatethesafetyofdigestingwormeggstoregulatetheimmuneresponseinMS.Dr.JohnFlemingisleadingthestudy.ThenextphaseofhisresearchwillagaintesttheuseofwormeggsasatreatmentforMS,butwillinvolvemorepatientsandlast longer. Dr.FlemingisaprofessorofneurologyattheUniversityofWisconsinSchoolofMedicineandPublicHealthandthedirectoroftheMultipleSclerosisClinicattheUniversityofWisconsinHospitalandClinics.HisinterestinMSstartedinthe‘70swhenhewasaresearchfellowfortheNationalMultipleSclerosisSociety.RaisedinHawaii,Dr.FleminghasresidedinWisconsinforthepast20years. Thisstudy,calledHelminth-InducedImmunomodulationTherapy(HINT),offersanalternativeapproachtotreatmentofMS.Itisfundedbya$567,110grantfromtheNationalMSSocietyandislookingattheuseofparasiticwormsthatliveinsideahost,calledahelminth,totreatthesymptomsofMS.

Hygiene Hypothesis Thetheorydrivingthestudyiscalled“thehygienehypothesis.”Thishypothesissuggeststhatdeveloped

countries,suchastheUnitedStates,havehigherincidencesofallergiesandautoimmunediseases,becausethereislittleornoexposuretoparasitesandotherinfections. “Inthedevelopingworldwheretheyhavemanyhelminthsandotherinfections,theyjustdon’tgetmultiplesclerosis,”Dr.Flemingsaid.“Butindevelopedcountries;wherekidsarevaccinated,wetakeantibioticsallthetimeandthewaterissuperclean;wehavehigher

incidencesofautoimmunity.”Andthatmeanshigherincidences of MS. “Hygienesanitationisagoodthing,”addedDr.Fleming.“Wedon’twantepidemicslikecholera.”Buttheenvironmenthaschangedfasterthanourgenetics,saidDr.Fleming.Theimmunesystemwasaccustomedtoexposuretoparasites.Withoutthem,theimmunesystemsometimesattacksthehumanbodyinstead. “Helminthsandotherkindsofnaturalinfectionslearnhowtomodulatethehost,”saidDr.Fleming.“Fortheirownsurvival,theyproducesubstancesthatreducetheintensityoftheimmuneresponse.Andsimilarly,thehostrealizesthesearebigmulti-cellularorganisms.Thebodywon’tlaunchamassiveimmuneattackonthem,orit’llharmitsowntissuesbycausingtoomuchinflammation.”This“immunologicaltruce,”asDr.Flemingcallsit,isseeninthebody’sresponsetoparasiticinfection.Itpushestheimmunesystemtowardsalessinflammatoryresponse. Andthisiswherethewormscomein. Dr.Flemingbelievesthewormscanpotentiallyredirectthebody’simmunesystemawayfromtheinflammatoryresponsethathappensinMS.“We’rebasicallyusingthehelminthasaprobiotictochange theimmunesystemtohelppeoplewithMS,” Dr.Flemingsaid.Probioticsarelivingorganisms thatbenefitthehealthofthehost.Theycanbefound

A technician looks at worm eggs through a microscope at OvaMed, the German biotech company that supplies the eggs used in Dr. Fleming’s study. Photo provided by OvaMed, Hamburg, Germany.

In the developing world where they have many helminths and other infections, they just don’t get multiple sclerosis. - Dr. Fleming

4 JOIN THE MOVEMENT: wisMS.org

infoodproductssuchasyogurt,cottagecheese,sauerkrautandmanypickles.

Five Patients Drank Worm Eggs InDr.Fleming’sHINT1study,fiverecentlydiagnosedrelapsing-remittingMSpatients,withnoprevioustreatment,drankwormeggs–ormorespecifically,Trichurissuiseggs,whicharepigwhipworms.Theydidthiseverytwoweeksforthreemonths,2,500eggsatatime. Manymightwonderhowdrinkingwormeggsfrompigscouldbesafeforhumans.Theeggscomefromdisease-freepigsthataregrowninacleanenvironmentatabiotechcompany,Dr.Flemingsaid.Hefurtherexplained:“Becauseit’snotahumanpathogen,itdoesn’tcausediseaseinpeople.Theideaisalittlebitlikeusingcowpoxtohelphumansmallpox.Ifyougaveanythingfromahuman,likeattenuatedsmallpox(alessharmful,butstillliving,versionofsmallpox),youalwayshavethedangerthatit’sgoingtorevert(tobeingharmful).” Previously,researchersattheUniversityofIowashowedthatT.suiswassafe to ingest and reduced symptomsinpatientswithCrohn’s,aninflammatoryboweldisease. Dr.Flemingadded,“It’snotlikeyou’redrinkingaglassofearthwormsonarealityshow.Wegiveitasmicroscopiclittleova,oreggs,inasportsdrink.Essentially,Gatorade.” Kristen,apatientwhoparticipatedinthestudy,saidthisaboutthewormeggcocktail:“Thefirsttime,Iwasn’tsurewhatitwouldbelike.Iwasalittlegrossedout,butitwassupereasytodo.Ilikedthatitwassomethingnatural.”

Andhowdoesittaste? “Itwasalittlesalty,”Kristensaid. AccordingtoDr.Fleming,aftertheeggsareingested,thelarvaehatchinthesmallintestine.Bythetimetheytraveltothelargeintestine,theyareafractionofaninch.Thisiswheretheyaredestroyedbytheimmunesystem,hesaid. “Thewormdoesn’tpenetratethegutwalls,”Dr.Flemingsaid.“Youneverhavetoworryaboutitgoingintotissue,liver,lungsorsomethinglikethat.Itjustkindofslithersalong.”

Participants Received Frequent MRIs PatientsweremonitoredduringthestudywithMRIscanstolookatthenumberofnewlesionsthatdevelopedbefore,duringandaftertheingestionofwormeggs.AccordingtoDr.Fleming,“AnMRIscanismuchmoresensitivethanclinicalmeasures.TheaveragepatientwillhavemaybeoneattackinayearinMS,but10MRIevents.Todate,theMRIfindingsare

encouraging,butlargerandlongerstudieswillberequiredbeforeanydefiniteconclusionsarepossible.” Kristen,whoisnewlydiagnosedwithMS,saidparticipatinginthestudywasreassuring. “IhadtodoalotofMRIs,”shesaid.“Ithelpedmetrackwhatwasgoingonwithmydisease.” TheMRIsalsohelpedDr.Flemingkeeptrackofthepatients’safetybymakingsurethetreatmentdidn’tmaketheirMSworse.Kristenadded,“Dr.Flemingwaswonderful,checkingintomakesureyouwere

feelingalright.Iwasn’teverconcerned.” Kristensaidsheparticipatedinthetrialbecauseshewashopingthatitwouldhelpadvanceresearch.“It’spromising,”shesaid. Thenextstepisastudywith18patients,calledHINT2,thatwilllast18months.“Anotherquestionforthefutureis,dowewanttobeusingthewholewormordoweisolatethemolecule

Dr. Fleming’s patients drank 2,500 microscopic eggs in a tablespoon of a sports drink-like fluid from bottles such as these. Photo provided by OvaMed, Hamburg, Germany.


whichisactiveinthewormanduseitinpillform,”Dr.Flemingsaid.“Thepillisprobablytheultimategoal,butyouhavetostartsomewhere.Wearestartingwiththecrudepreparation,butwedon’twanttostopthere.” Researchalsodoesn’tstopatrelapsing-remittingMS.Dr.Flemingsaid,“MostnewtreatmentsforMSstartwithrelapsing-remittingpatients.Theyarethemostactive,soit’seasiesttoseeifsomethinghasaneffect.Manytimes,ifsomethingseemstohaveaneffectinrelapsing-remittingMS,thenyougoontolookatsecondaryprogressive.”

Dr.FlemingaddedthatitmightnotstopwithMS.Ifthistypeoftreatmentworks for one autoimmunedisease,suchasCrohn’s,andif it were to work on a second autoimmune disease,likeMS,could it work forothers?

Butfornow,Dr.Fleminghas“cautiousoptimism,withtheemphasisoncaution,”hesaid.

Amanda Gasper is a recent graduate of the University of Wisconsin-Madison where she studied Life Sciences Communication. She is a part-time copywriter for the Wisconsin Chapter.

RecentreportshavecalledattentiontotheideathatCCSVI,areportedabnormalityinblooddrainagefromthebrainandspinalcord,maycontributetonervoussystemdamageinMS.Dr.PauloZambonifromtheUniversityofFerrarainItaly,conductedapilotstudy(publishedinApril2009),andsuggestedthatalarger,better-controlledevaluationofthepossibleimpactofCCSVIonMSbeundertaken.TheNationalMSSocietysubsequentlyissuedarequestforproposalsandinJunewillannounceitsfundingdecisionsforCCSVI-relatedresearch. WeighinginonthepossibleconnectionbetweenCCSVIandMS,Dr.JohnFleming,professorofneurologyattheUniversityofWisconsinSchoolofMedicineandPublicHealthandtheDirectoroftheMultipleSclerosis

ClinicattheUniversityofWisconsinHospitalandClinicssaid,“CCSVIisaninterestinghypothesisthatneedstobefollowedupon.” “Weareveryenthusiasticabouttheresearch,”continuedDr.Fleming,“butclinicaltreatmentrightnowispremature.Wedon’tevenknowifit’ssafe.Thisisexperimental,soshouldonlybedoneunderanethicsboard-approvedexperimentalstudy,bothintermsofdiagnosisandtreatment.Understandably,peopleareanxious.Thismightbeabreakthroughandtheyfeelliketheycan’twait,butit’sthebestwaytodoit.” TolearnmoreaboutCCSVIandtheNationalMSSociety’sresearchinitiative,gotonationalMSsociety.org.

Dr. Fleming Says Hypothesis Merits StudyMS Society’s CCSVI Research Awards to be Announced in June

Dr. Fleming’s research may benefit other autoimmune diseases, in addition to MS.

Dr.Flemingseeks18individualstoparticipateinthesecondphaseofhisHINTstudy.Themaincriteriaforparticipationare:NewlydiagnosedwithMSorhaveexperiencedfirstattackofanMS-likedisease(suchasopticneuritis).NopriortreatmentwithMSdrugs.Willingnesstoparticipateinanexperimentaloraltreatment.Forinformationcontact: •UniversityofWisconsinsite:NamitaAzad, 608-265-8765,[email protected] •MarshfieldClinicsite:CarolBeck, 800-782-8581ext.93144; [email protected]

Participants Sought for Second Phase of Dr. Fleming’s Worm Egg Study


One Step at a TimeYou Are Changing Lives

walkMSwisconsin.org • [email protected] 800-242-3358 • 262-369-4400

JOIN THE MOVEMENT

Thank you for joining the movement and supporting Walk MS. Over 22 years, Wisconsin’s Walk MS has changed lives. It’s changed them one hug and one

smile and one knowing glance at a time.

Because you stepped up: families feel hope and research moves forward. There is no doubt –

you are the movement to end MS.

Especially because 95 percent of the Society’s funding comes from individual donors like you, please remember to submit your pledges by June 25.


Nearly 100 Participate in 7th Annual EventAttendees Promote Affordable Prescription Drug Pricing

Aftersharingthestoryofherolderbrother’sstrugglewithmultiplesclerosis,WisconsinStateSenatorAlbertaDarlinggavetheindividualsgatheredforthe7thAnnualLegislativeAffairsDaytheirmarchingorders:“Give‘emhell!”Andwiththat,thenearly100MSactivistsgatheredattheConcourseHotelinMadisononMarch10preparedtobringtheirmessageofaffordableprescriptionstothehallsoftheCapitol.

AtissueisthepracticeofagrowingnumberofinsurerswhoaremovingMSmedicationsintospecialtytiersandpassingalongincreasedcoststotheconsumer.ThisplacesasignificantburdenonindividualswithMS,andinsomecasescaneffectivelypricetreatmentsoutofreach.Infact,aJune2009nationalsurveyofMSpatientsfoundindividualsseventimesmorelikelytodiscontinueuseofprescriptiondrugswhenmonthlyout-of-pocketexpensesexceed$250. Inatierstructure,genericdrugsareinthefirsttier;preferredbrandnamedrugsareintiertwo;andnon-preferredbranddrugsareintierthree.Specialtydrugs,suchasthoseutilizedforMS,aretypicallycategorizedinthefourthtier.Whileaconsumerpaysafixedamountformedicationsinthefirstthreetiers,atierfourdesignationforcestheindividualtopayapercentageofthedrugcost–20to35percentormore. Nationalresearchshowsthatannualtreatmentcostsfordrugscategorizedastierfourcanrangefrom$17,000

to$40,000,withsomemedicationscostingmorethan$100,000peryear.LegislativeAffairsDayattendeessharedthattheirMSprescriptioncostsrangedfrom$4,000annually“withareallygoodinsuranceplan”to$29,430annually,“whichdoesn’tincludeotherdrugs,twoMRIs,abonescananddoctorvisits.” WhiletheNationalMSSocietyisworkingatthefederalleveltoenactreform(U.S.SenatorJohnD.Rockefeller(D-WV)introducedabillinAugust2009),severalChaptersincludingMinnesota,NewYork,Maryland,California,NebraskaandWisconsinareaddressingtheissueatthestatelevel. LeveragingthemomentumofLegislativeAffairsDay,thedraftofWisconsin’saffordableprescriptionsbillisnowcomplete.GeorgiaMaxwell,advocacymanagerfortheWisconsinChapter,saidWisconsin’sbillismodeledafterthefederalinitiativeandwouldestablishacapforprescriptiondrugco-paycosts. “Evenifyouweren’tabletoattendLegislativeAffairsDay,youcanstillsupportWisconsin’saffordableprescriptiondrugsinitiative,”saidMaxwell.Sheadded,“AnimportantfirststepistosignupforActionAlerts.”(Seetheadjacentboxfordetails.)MoreinformationaboutWisconsin’saffordableprescriptionsinitiativewillbepostedatwisMS.org.

Sign up to Receive Action Alerts TheWisconsinChapterhas2,149activists–that’sup31.5percentfromMarch2009.ThroughouttheUnitedStatesthereare127,168MSactivists. InordertokeepmovingforwardonissuesthatmattermosttopeoplewithMS,weneedyourvoice.YoucanbecomeanMSactivistsimplybysigninguptoreceiveActionAlertsfromtheNationalMSSociety.ActionAlerte-mailswillkeepyouapprisedoffederalpoliciesandgovernmentprogramsthatimpactpeoplewithMSandtheirfamilies. It’[email protected]@wisMS.org;orcall262-369-4400or800-242-3358.

Mark and Katie Marek of Jefferson , Wisconsin attended the Legislative Affairs Day program.


The6thAnnualMSSummitwillbeheldMay21-22attheKalahariResortandConferenceCenterinWisconsinDells.PresentedbytheNationalMultipleSclerosisSociety-WisconsinChapter,forthefirsttimeintheevent’shistorytheMSSummitwillwelcomeMinnesotaChapterresidents.AndwhileattendeesfromWisconsinandMinnesotamaydifferintheiropinionsaboutaparticularNFLquarterback,itisanticipatedeveryonewillagreethatthisyear’sMSSummitisthemosteducationalandenjoyableever. KickingofftheMSSummitonFriday,May21witha7:30p.m.keynoteaddressisDr.JulieBobholz,PhD,AssociateClinicalProfessorofNeurologyattheMedicalCollegeofWisconsin.Dr.BobholzisaneuropsychologistwhoworkswithMSpatientsandhaswrittenextensivelyonMSandcognition.ShewillspeakaboutMSandemotionalwellness. TheclosingkeynotepresentationwillbemadebyDr.ColleenHayes,PhD,oftheUniversityof

Wisconsin-MadisononSaturday,May22at11:45a.m.Dr.HayeswillspeakaboutherSociety-fundedresearchonvitaminDandMS.Inarecentinterview,Dr.Hayessaid,“StudieshavesuggestedthatvitaminDisbeneficialforpreventinginfections,autoimmunediseases,cancersandcardiovasculardiseases.

Nooneshouldbewithoutthesehealthbenefits.” Ofcourseinbetweenthesetwoexcitingpresentations,MSSummitattendeeswillhavetheopportunitytovisitvendorbooths,attendbreak-outsessionsandnetwork.Saturday’sprogramwilleven

includeasunrisechairyogaclass–alight,peacefulactivitydesignedtogetthebodymovingandmentallyprepareparticipantsfortheexcitingdayahead. TheWisconsinDellssettingalsoprovidesplentyofopportunityforfamilyfun.MSSummitroompackagesattheKalahariincludefourpassestotheresort’sindoorwaterpark–billedasWisconsin’slargest.ThosestayingattheKalahariwillalsoreceivediscountedadmission

totheresort’sthemeparkaswellasreducedpricingonaSundaybuffet.Parentsmayalsoenrolltheirchildrenages5to12inaKalaharikidsprogramonSaturdayfrom9a.m.to12:30p.m.Thefeeis$5perchild. VisitwisMS.orgtoregisterfortheMSSummitorcall800-242-3358forinformation.

Registration info:GotowisMS.orgtoregisterforthefreeMSSummitprogram.RoomreservationsshouldbemadedirectlywithKalaharibycalling877.253.5466andrequestingtheNationalMSSocietyroomblock,orGroupID11765.RoomreservationscanalsobemadeonlinebyaccessingKalaharithroughourwebsite,wisMS.org.

Kalahari Room Packages:Reducedroomrateisavailableonafirst-come, first-servebasis.Makeyourreservationsearlyto secure special discounted pricing.

Alison Wisneski is a Wisconsin Chapter communications intern and a UW-Whitewater journalism major who will graduate in May 2010.

Family Fun Also Part of WeekendMS Summit Provides Helpful Information, ConnectionsBy Alison Wisneski

In addition to presentations, MS Summit attendees can visit vendors


Schedule of events:Friday, May 215:00 p.m. - 7:30 p.m.–Welcomereception/check-in/ exhibitboothsopen7:30 p.m. - 8:15 p.m.–Keynotespeech: Dr.JulieBobholz

Saturday, May 227:00 a.m. - 9:00 a.m.–Registration/check-in7:00 a.m. - 7:45 a.m.–Chairyogaclass7:30 a.m. - 9:00 a.m.–Complimentarybreakfastbuffet7:30 a.m. - 12:30 p.m.–Exhibitboothsopen9:00 a.m. - 12:30 p.m.–Kalaharichildren’sactivities ($5perchild)9:15 a.m. - 10:15 a.m.–BreakoutSession110:30 a.m. - 11:30 a.m.–BreakoutSession211:45 a.m. - 12:30 p.m.–Keynotespeech: Dr.ColleenHayes12:30 p.m.–MSSummitconcludes

Breakout session topics:• Relationship Matters (repeated):KristinKoepke MA,LPC,ART-BC,psychotherapistandart therapist.Designedforspouse/partnerattendees. TeachesMSmanagementinarelationship.• Medicare/Medicaid101(repeated):TamaraCarey, CPC.Thissessiongivesanin-depthevaluationof Medicare and Medicaid.• Skills for the Job of Living (repeated): KathyWolf, OTR&TanyaRiegel,OTR.Learnreal-life managementofdailyactivitiesalongwithtipsfor dealingwiththeunpredictabilityofMS.• Proper Nutrition and Vitamins for MS (repeated): SaraBeno-Chambers,MSN,FNP,MSCN.Secure basicknowledgeofdietandnutritionplusan overviewofcomplimentaryandalternativetherapies important to MS management. • Research101/ClinicalTrials(NOTrepeated): JimTurk,M.S.–Curiousabouttakingpartinclinical trials?Learnfirsthandwhatyou’llneedtoknow.• AccessingResourcesPanelDiscussion(NOT repeated): Expertswillanswerquestionsabout resourcesavailabletoyouandyourlovedones.

WhenhewasfirstapproachedbytheWisconsinChaptertoconductanMSPin-Upprogramin2009,KenHorkan–owneroftwoSheboygan-areaCulver’slocations–admittedhedidn’tknowawholelotaboutmultiplesclerosis.Thatsoonchanged. First,HorkandiscoveredthatoneofhisemployeeshadapersonalconnectiontoMS.Next,whenheattendedWalkMS,Horkansaw“awholelotofourdailycustomers.IrealizedourCulver’sfamilywasaffectedbyMS.” Horkanadded,“WhenIlearnedthatanemployee’smotherhadMS,IdecidedtogivethePin-Upprogramawhirl.”Theemployee’sgoalwastogeteveryonebehindtheprogram.“I’mproudofourstaff.TheyraisedthebarandcameupwithpersonalgoalsonhowmanyPin-Upstheyweregoingtosell.Theyknewthatoneofourteammemberswasinvolvedinthiscause,andthatknowledgepushedthemtodomore.” AccordingtoHorkan,sellingPin-UpsisaverysimplewaytosupporttheMSmovement.“CustomerswouldseethePin-Upsandsay,‘I’llbuyone,’”saidHorkan.“ItwasamazingtohearhowmanyofourCulver’scustomershaveapersonalconnectiontoMS.” ThatfactreallyhithomewhenHorkanattendedthe2009WalkMSinSheboygan.“IhadneverpersonallybeentoWalkMSbeforelastyear.Itwasarealeyeopener.Isawalotofourdailyguests.”Horkancontinued,“Youdon’tnoticepeopletalkingaboutMSuntilyougetinvolved–andthenyouhearthestories.” LastyeartheCulver’sofSheboyganrestaurantssoldMSPin-UpsforWalkMS,MSAwarenessWeekandChallengeWalkandraised$2,500.WithallthathenowknowsaboutMS,HorkanissellingPin-Upsagainin2010.

‘Our Culver’s Family is Affected by MS’Sheboygan Culver’s Conducts Successful Pin-Up Program

Pewaukee to Whitewater to Madison 62.5, 75 and 100 mile options each day

August 7-8, 2010 bikeMSwisconsin.org

“During a long stretch of r id ing a loneandwonder ing why I r ide , I lookedupandsawa s ign a long the roadside that read, “Thanks for r id ing. I have MS.” I lookeddown the longdr ivewayand

a womanwas waving to me.

This i s why I r ide .”Tr ic ia Perkins , b ike par t ic ipant 4 years

Team: MG&EPower Peddlers

Presented by your Milwaukee and Madison Area TOYOTA Dealers: Andrew • Don Jacobs • Gentile •

Heiser • Hesser • Jack Safro • Jon Lancaster • Kenosha • Ruda • Russ Darrow • Smart • Wilde

“ I knowthe biggest reason I r ide i s mydaughter, whohas MS.The Saturday night programof each r ide i s s t i l l as emotionalas the f i rs t one. I leave th inking, “Howcan I do better?”

Maybenext year wi l l be the year for a mirac le . ”Barbara Lenz , b ike par t ic ipant 10years

TeamCaptain : B IBS

“Twothings makeBike MSstandout : theroute andthe fu l l suppor t that i s in p lace forevery turn of the wheel . I rate the suppor t as

being as c lose to perfect as can be .”Joe Hol land, b ike par t ic ipant 17years

Team: DamNumbBuMS

“ I r ide because I knowthat Society- fundedresearch hashadan extremely pos i t ive impact on the l ives of manywith MS, and I could not get past the f i rs t weekend inAugust without fee l ing the needto he lp those with MS.”Dennis A. Chr ist iansen, b ike par t ic ipant 12years

TeamCaptain : SPROCKETROCKETS

“Rais ing moneyandr id ing every year i s mywayto showmywife , Eddy, I care about herandthe problemsMSpresents for her. She has hadMSfor 20years andwer ide tandemtogether. Mydaughter, mysonandmybest f r ienda l l r ide with us . What could be better?”

TomMagnus , b ike par t ic ipant 7 yearsTeam: Fast Eddy’s “Wedon’t t read l ight ly”

An unforgettable ride. An unbeatable destination. A world free of MS.

“When I walk upon the stage Saturday night andsee a l l the peoplewith MSthat surroundme, I know I amnot a lone in th is f ight . Andtobe upon that s tage looking out at a l l the people whodonot have MS,but whoare r id ing because of and for you, i t i s a sacred fee l ing .”

Jess ica Hendriksen, b ike par t ic ipant 2 yearsTeam: Jess ’s MSFight ing Pedal Pushers

“As longas I amable to r ide andg ive back, I wi l l .I wi l l cont inue to JOINTHEMOVEMENT.”Cyndi Cahi l l , b ike par t ic ipant 9 yearsTeamCaptain : Waukesha Y-Ders

“Rais ing moneyandr id ing every year i s mywayto showmywife , Eddy, I care about herandthe problemsMSpresents for her. She has hadMSfor 20years andwer ide tandemtogether. Mydaughter, mysonandmybest f r ienda l l r ide with us . What could be better?”

TomMagnus , b ike par t ic ipant 7 yearsTeam: Fast Eddy’s “Wedon’t t read l ight ly”

“The f i rs t year I rode, a young lad about 16rodebes ideme for a fewmi les . I askedhimwhyhe was doing the r ide .Hesa id , “Mymomhas MSandthis i s one th ing that I cando for her. She does so much for me.” What a great k id .”

Phyl Er ickson, b ike par t ic ipant 6 yearsTeam: Kathy ’s Kause

An unforgettable ride. An unbeatable destination. A world free of MS.


Lastyearmorethan80WisconsinChaptervolunteersheadedtotheWisconsinStateFairand,inexchangeforfreefairadmission,filledavarietyofuniquejobs–including“crowdcontrol”forthefamousracingpigs.ThissamevolunteeropportunityisavailableattheWisconsinStateFaironSaturday,August14. InexchangeforvolunteeringtoworkattheWisconsinStateFairforanapproximatefour-hourshift,participantswillreceivefreeadmissiononAugust14andfreeparking.Volunteersmustbeatleast14yearsold.

Ifyouareinterestedinparticipating,please contactKristinRaeberat262-369-7165ore-mailkristin.raeber@wisMS.org.

Sample Volunteer Assignments Mostpositionsarefourhoursinduration. •TransitGreeters:GreetFairattendeesasthey departbuses • TicketTakers:Scanticketsatentrygates • RacingPigs:Assistwithcrowdcontrol • CentralMallHelpers:Assistwithspecialevents • Coliseum:Keepaislesclearduringjudging • Band walkers: Lead entertainment groups to stages

Participants Receive Free AdmissionAugust 14 is MS Volunteer Day at Wisconsin State Fair

Connie, left, and Diane Plier provided “crowd control” for the famous racing pigs as part of the 2009 Wisconsin State Fair MS Volunteer Day.

Personal Connections DriveLocal Toyota Dealers toJoin the Movement Thisisn’tyourtypicalsponsorship. True,thereisanimportantfinancialcomponentthathelpsguaranteethesuccessofBikeMS.ButtheMilwaukeeandMadisonAreaToyotaDealers’sponsorshipofBikeMSrunsdeeper. That’sbecausetherelationshipispersonal. It’spersonalbecauseaneighborofaWildeToyotaemployeehasMS.It’spersonalbecauseaclosefriendofaLancasterToyotaemployeehasMS.Andit’spersonalbecausetheownersofHesserToyotahaveafamilymemberwhohasMS. “AmongtheMilwaukeeandMadisonareaToyotadealers;wehavefamilymembers,friends,employeesandcustomerswhohaveMS,”explainedPatDonahue,vicepresidentofWildeToyotainWestAllisandspeakingonbehalfofthedealergroup.Andthat’swhy,Donahuesaid,foralmost10yearsoneormoreofthedealershassupportedtheNationalMSSociety-WisconsinChapter.“It’simportanttoustohelpcreateawarenessforMS,”saidDonahue,“andtosupportMSresearch.” Thatallchangedfouryearsago.Becausebeginningin2006,andforthefirsttimeintheirhistoryMilwaukeeandMadisonareaToyotadealerscametogethertojointlysponsorBikeMS.AccordingtoDonahue,theNationalMSSocietyistheonlycausetheToyotadealerscollectivelysupport.“Whatwasrootedinpersonalrelationships,”explainedDonahue,“hasgrownintoamajorsponsorship.” NowknownasBikeMS:TOYOTABestDamBikeRide,DonahueaddedthatthesponsorshipisalsoinkeepingwithToyota’sculture.“Atitscore,”saidDonahue,“Toyotaisaboutpeople.”AndinthecaseoftheTOYOTABestDamBikeRide,it’salsoaboutcreatingaworldfreeofMS.


Temperaturesmayhavedippedbelowzero,butspiritsremainedhighatthe27thAnnualMSSnowmobileTour. HeldJanuary28-31inWabeno,Wisconsin,the2010eventattractedmorethan100riders,volunteersandsupportivefans.TogetherwithpresentingsponsorForestCountyPotawatomiFoundationandsponsorshipsfromtheAssociationofWisconsinSnowmobileClubs(AWSC),RockfordSilkScreenProcess,Inc.andEMDSerono;thegrouphasraisednearly$225,000ofthe$235,000goal. RickRomeneskotoppedthelistofSnowmobileTourfundraisersforthefifthyearinarow.Hegenerated$35,000bringinghis15-yeartotalcontributionto$212,121. TheFoxAward,honoringhardworkanddedicationtowardtheSociety’smission,waspresentedtoMonikaIverson.ScottSmithreceivedtheGarlandAwardinrecognitionofhisintegralroleinplanningandpromotingtheMSSnowmobileTour.

Forthesecondyearinarow,theAmericanBirkebeinerdesignatedtheNationalMSSocietyasthebeneficiaryofitsBirkieSkiersforCuresfundraisingprogram.Andalsoforthesecondyearinarow,Dr.IanDuncanchampionedtheprogram’ssuccess.Dr.DuncanisaSociety-fundedPromise:2010researcherattheUniversityofWisconsin-MadisonandalsoanavidparticipantinBikeMSaswellastheAmericanBirkebeiner. OrganizersoftheAmericanBirkebeiner,NorthAmerica’slargestcrosscountyskimarathon,reportedthatthe2010eventsetarecordwithmorethan10,200participants.TheBirkieSkiersforCuresprogramgeneratedmorethan$50,000throughsalesofcollectiblepins.Thisputsthetwo-yearfundraisingtotalfortheBirkieSkiersforCuresprogramatmorethan$155,000. TheAmericanBirkebeinerwasheldFebruary25-27inCableandHayward,Wisconsin.AsmallsupplyofSkiersforCurespinsisstillavailable.Topurchaseyours,[email protected].

27th Annual MS Snowmobile Tour Attracts more than 100Wabeno Weekend Warms Hearts, Despite Deep Freeze

Dr. Ian Duncan Drives FundraiserBirkie Skiers for Cures Program Features Cool, Collectible Pin

Dr. Ian Duncan is a longtime American Birkebeiner particpant and premier MS researcher.

Scott Smith accepts the Garland Award, named for Ralph and Joyce Garland – former Trail Master and Trail Mistress of the MS Snowmobile Tour.

PRESENTINGSPONSOR

SUPPORTING SPONSORS


You’llnevergetthisdirtyforanythingthisgood!TheMSMudRuniscomingtoDresser,WisconsinSaturday,September11–andyou’reinvitedtoparticipate. MSMudRunisa10Krace(approximately6miles)throughamilitary-styleobstaclecoursemadeofmud.TeamsoffivecompeteintheCo-ed,Corporate,UniformedServices,AllMaleorAllFemaledivisions.Youcanalsorunasanindividualorteamoftwo. MSMudRunattractspeopleofallskilllevelsandisthefastest-growingadventureraceinthecountry.TheJacksonvilleChapteroftheNationalMSSocietylaunchedtheeventin2009with900participants.ThisyearJacksonville’sMSMudRunattractedmorethan2,800participantsandraised$400,000.BasedonJacksonville’ssuccess,theMSMudRunisbeingexpandedtofournationalmarkets. TheMSMudRunwillbeheldattheTrollhaugenSkiandSnowboardResortinDresser–whichislocatedinPolkCountyandapproximately50milesfromMinneapolis/St.Paul,Minnesota.

Whetheryouruninthemudorwatchcontestantsslip,slideandsloshtheirwaytovictory;theMSMudRunisauniqueexperienceyouwon’twanttomiss.Registrationis$40-$60,andaminimumfundraisingpledgeof$100perpersonisrequired. Formoredetails,visitwisMS.org,e-mail [email protected].

Are You Ready to Get Dirty for a Good Cause?Wacky MS Mud Run Coming to Dresser, Wisconsin

The MS Mud Run will be held September 11, 2010 at the Trollhaugen Ski Resort in Dresser.

Storiesofperseverancewillpermeatethe2010MSLuncheonsscheduledforJune15atThePfisterHotelinMilwaukeeandJune16attheMarriottWestinMadison.FeaturedspeakersDr.ColleenHayes,aSociety-fundedWisconsinresearcher;andLoriSchneider,aWisconsinresidentandthefirstpersonwithMStosummitMt.Everest;willprovideinsightsintothedeterminationthathasallowedeachtomaintainintensefocusonseeminglyinsurmountablechallenges. Dr.Hayes,PhD,isaprofessorandresearcherattheUniversityofWisconsin-Madison.ShehasstudiedvitaminDandmultiplesclerosisfornearly20years.In2009shereceivedherfifthresearchawardfromtheNationalMSSociety–a$485,469three-yeargranttocontinuetoexplorehowvitaminDmayinfluenceMS.“StudieshavesuggestedthatvitaminDisbeneficialforpreventinginfections,autoimmunedisease,cancerandcardiovasculardiseases,”saidDr.Hayes.“Noone

shouldbewithoutthesehealthbenefits.” WhileDr.HayeswasworkinginthelaboratorytounlockthemysteriesofMS,SchneiderwastacklingtheSevenSummits–thehighestpointsoneachofthesevencontinents.InMay2009shestoodatopMt.EverestandbecamethefirstpersonintheworldwithMStoachievethisremarkablefeat.Sheisalsoamemberofanelitegroupofabout250people(andtheonlyonewithMS),whohaveconqueredtheSevenSummits.SaidSchneider,“Aftermydiagnosis,MSwasmymountaintoclimb.Climbingmountainshashelpedmemovebeyondthefear.” AlsoattheMSLuncheons,theWisconsinChapter’sMSCollegeScholarshipawardwinnerswillberecognized. Allguestsmustregisterinadvanceandpaytheminimumdonationof$100.Tablesareavailablefor$1,000.MakeyourreservationtodaybycontactingtheWisconsinChapterat800-242-3358.

MS College Scholarship Award Winners will also be RecognizedDr. Hayes, Lori Schneider to Address MS Luncheon Attendees


Inthefallof2009,theNationalMSSociety-WisconsinChapterlaunchedGoldenCircle,theSociety’snewindividualgivingcampaigncommittedtothecause,careandcureofMS.Thecampaignwascreatedtoencouragedonationsandrecognizethesignificantsupportofindividualswhomakeapersonalannualgiftof$1,000ormoretomovethemissionforward.Thecampaign’soverallgoalistoincreaseindividualnon-eventgivingthroughavarietyofcultivationactivities

includingprivatereceptionshostedbyleadershipdonorswhoengagetheirfriendsandbusinessassociatestojointheGoldenCirclemovement.Afterlaunchinginthefallof2009,theWisconsinChapter’sGoldenCircleprogramhasalreadygeneratedmorethan$260,000in donations.

OnMarch21,MichaelandKellySigmanhostedaGoldenCirclereceptionintheirhometownofLaCrosse,Wisconsin.TheSigmansareleadersincommunityphilanthropicprojectsandMichaelalsoservesasanMSAmbassadorandWalkMSCommitteeChair.Attendedby23guests,theSigman’sprivatereceptionfeaturedDr.LorenRolak;aneurologist,researcherandfounderoftheMarshfieldClinic’sMultipleSclerosisCenter,whospokeaboutexcitingadvancesinMSresearch.Internationally-acclaimedauthorandMSadvocateJeffreyGingoldspokeabouttheeffectsof MS on cognition and howdonorscanbecomemoreinvolvedthroughactivismandvolunteerengagement. Reception guestsalsolearnedthatGoldenCirclebenefitsincludeaccesstobreakingresearchnews,invitationstoresearchbriefings,

monthlyconferencecalls,labtourswithinternationally-renownedscientists,invitationstoexclusivelocalandnationaleventsandtheopportunitytoconnectwithotherGoldenCirclemembers–passionatepeoplewhowantdosomethingaboutMSnow.“Iaskforyourhelpnowbecausepromisingresearchrisksbeingstoppedforthelackoffunding and families facethepossibilityofreductions in programs andservices.Theirneedis great and times are not,”explainedMichael

Sigmantohisguests.Hecontinued,“ImustbeboldifIamtoaskforyourhelptofundthecure.Yourgiftandsupportwouldmeanthatsomedayfriendslikeminewillneverhearthewords,‘YourchildhasMS.’Pleasejoin

me...workingtogetherwithpassionandpurposetocreatewhatyearsagowasonlyahope…aworldfreeofMS.”FormoreinformationaboutjoiningtheGoldenCircle,visitwisMS.orgorcall800-242-3358.

Denise Jendusa is the Wisconsin Chapter’s Vice President of Major Gift Development. She can be reached at 262-369-7166 or e-mail [email protected].

Fundraising Reception Held in La CrosseGolden Circle Individual Giving Campaign Tops $260,000By Denise Jendusa

From left, Michael and Kelly Sigman hosted a La Crosse fundraiser featuring acclaimed author, Wisconsin resident, and MS advocate, Jeffrey Gingold.

Are You Ready to Get Dirty for a Good Cause?Wacky MS Mud Run Coming to Dresser, Wisconsin

Attending the Golden Circle reception in La Crosse were, from left, Corey and Stacey Sjoquist, Randy Eddy, Sr. and Bill Hoel.


TheSocialSecurityAdministration(SSA)makesitmoredifficultforself-employedpeopletobefounddisabledthanitdoesforemployees–thosewhohaveworkedonlyforsomeoneelse.SSAusesadifferentdefinitionof“substantialgainfulactivity”forself-employedpeople,whichaffectswhetherajobisconsideredtobe“pastrelevantwork.”PeoplewhodonotmeetSSA’smedicalstandardsfordisability(calledthe“ListingofImpairments”)mustshowthattheycannotperformpastrelevantwork–anyjobdoneinthepast15years,whichlastedlongenoughtolearntodoitandwas“substantialgainfulactivity.” Substantialgainfulactivityforemployeesisdeterminedsimplybylookingattheamountofincomeearnedpermonth.Untiltheendofthe1990s,$500permonthwassubstantialgainfulactivity.Sincethen,thesubstantialgainfulactivityamounthasgoneupeveryyeartothepointwherein2010itis$1,000permonth.Underthisrule,part-timejobsoftendonotcountaspastrelevantworkforemployees. SSAusesthesamesubstantialgainfulactivityamountwhenitconsiderswhetheraself-employedperson’sjobqualifiesas“pastrelevantwork.”Butforaself-employedperson,thisisonlypartofthetest.SSAalsolooksattheself-employedperson’sworkactivitiesandtheirvaluetothebusiness.SSAsaysthatmanyself-employedpeople,especiallywhentheyarebuildingtheirbusinesses,actuallylosemoney.Solookingonlyattheamountofincomeforself-employedpeoplemaynotaccuratelyreflectthetruevalueoftheirwork.

Considerthisexample. AwomanwithMSfatiguestopsworkingatherregularfulltimeofficejobandsetsupanon-linebusinessathomethatallowshertoworkwhensheisable.Sheneverearnsasmuchasthesubstantialgainfulactivitylevelthatisusedforemployees,butshespendsalotoftimeworkingeveryweektotrytomakeherbusinesssuccessful.Aftertwoyears,shegivesupandappliesfordisabilitybenefits.Herconditionhasnotworsened.

SSAvaluesher self-employmentworkbyfiguringouthowmuchshewouldhavehadtopayanemployeetoputinthehourssheworkedandconcludesthatitissubstantialgainfulactivityandtherefore“pastrelevantwork.”AlthoughSSAfindsthatshecannotdoherregularfulltimeofficejob,itfindsthatsheremainscapableofdoingtheself-employmentjobandisthereforenotdisabled. This is an unfair result. Sheneedstohirealawyerto

arguewithSSAaboutwhetherthisselfemploymentreallywas“substantialgainfulactivity.”

Tom Bush is the preeminent expert on SSDI in Southeastern Wisconsin. A Wisconsin Chapter volunteer for 20 years, in 2008 Tom was inducted into the National MS Society’s Volunteer Hall of Fame. Tom’s web site is www.tebush.com.

VisittheWisconsinChapter’swebsite,wisMS.org,andclickontheProFlowersspecialoffer.Orderanybouquetstartingatjust$19.99,and$10ofyourorderwillbedonatedtotheMSSociety–plusyou’llreceiveafreevase.ProFlowersfeaturesavarietyofguaranteedfreshflowersincludingSpringBlooms,OneDozenAssortedRosesand15AssortedTulips–eachaterrificchoiceformom.

SSA’s Interpretation of ‘Gainful Activity’ Makes it Tougherfor Self-Employed to Secure Disability DesignationBy Attorney Thomas E. Bush

Order Flowers for Mom, MS Society Receives $10

Wisconsin’s Tom Bush shares SSDI expertise gleaned over 20 years.


JaneJacobsonhasbeenappointedtoserveontheNationalMSSociety’sScholarshipReviewCommittee.AretiredteacherandresidentofElmGrove,Wisconsin,Jacobsonwillparticipatewith14otherappointeesrepresentingMinnesota,Alabama,Massachusetts,Illinois,Florida,GeorgiaandTexas. TheScholarshipReviewCommitteeassistsintheselectionofapproximately10topscholarsfromaroundthecountrywhoreceivefour-yearawardsdirectlyfromtheNationalMSSociety.Chaptersalsopresentawardstoaseparateslateofscholarshipwinners.TheWisconsinChapter’s2010scholarshipwinnerswillbeannouncedinMayandrecognizedattheMSLuncheoninMilwaukeeonJune15andinMadisonon June16. ThetwomostprestigiousawardsbeingselectedbyJacobsonandtheScholarship ReviewCommitteearetheJoyceNelsonPresidentialScholarship,namedforthecurrentNationalMSSocietyPresidentandCEO;andtheGeneralMikeDugan,USAF,PresidentialAward,namedinhonoroftheSociety’spastpresidentandCEO.

WisconsinresidentLauraHermannsreceivedtheJoyceNelsonPresidentialScholarshipin2008–thefirstfromtheBadgerStatetobesohonored. In addition to thisappointment,JacobsonisanMSCommunityAmbassadorfortheWisconsinChapterandservesontheMSLuncheonCommittee.Aftercompletingthethree-day,50-milewalklastyear;Jacobson

andherhusband,Doug,havealreadysignedupfor the2010ChallengeWalkMSinDoorCounty,September24-26.

Group Selects Presidential Award WinnersJacobson Appointed to National Scholarship Committee

Grant Support Powers MS Research, Services, ProgramsTheWisconsinChapterextendsitssinceregratitudetothefollowingorganizationsforgrantsawardedJanuary1,2010throughMarch31,2010.ForinformationcontactCindyYomantasat262-369-4431ore-mailcindy.yomantas@wisMS.org.

• $80,000fromtheChristianStewardship Foundationforresearch• $16,500fromEMDSeronoforspecialevents• $15,000fromtheDavidV.UihleinFoundation forresearch• $10,000fromEMDSeronoforeducationalprograms• $10,000fromTevaNeuroscienceforspecialevents• $8,000fromBiogenIdecforspecialevents• $5,500fromBiogenIdecforeducationalprograms

• $5,212fromTevaNeuroscienceforeducational programs• $5,000fromtheReimanFoundationforresearch• $5,000fromtheCudahyFoundationforresearch• $2,000fromtheGordonHenkeFamily Foundationforscholarships• $500fromtheFleckFoundationforresearch• $100fromtheJewishCommunity Foundation–Diane&LeonardGoldstein FamilyFund

Jane Jacobson and her husband, Doug, participated in the 2009 Challenge Walk MS in Door County. They plan to walk again in 2010.


Michael Carrithers,M.D.,Ph.DisanassociateprofessorattheUniversityofWisconsinSchoolofMedicineandPublicHealthandtreatspatientsattheUniversityHospitalandClinicsMSClinicandtheWilliamS.MiddletonVeteransHospital.Dr.Carrithersisstudyinghowimmunecellsmovethroughthebody.Hecurrentlyhasa$306,292grantfromtheNationalMSSociety.Shing-yan (Bill) Chiu,Ph.D.isaprofessorattheUniversityofWisconsinSchoolofMedicineandPublicHealth.Heisstudyingthemovementofmitochondria,whichgenerateenergyforthemyelinatedaxons(nervefibers).Chiu’sresearchissupportedbya$568,425grantfromtheNationalMSSociety.Ian Duncan,BVMS,Ph.D.,fromtheUniversityofWisconsin-Madison,hasa$3.4milliongrantfromtheNationalMSSocietyaspartofthePromise:2010NervousSystemRepairandProtectionInitiative.OneofthegoalsofhisresearchistorepairthemyelinsheetsthataredamagedinMS.John Fleming,M.D,isaprofessorattheUniversityofWisconsinSchoolofMedicineandPublicHealthandthedirectoroftheMSClinicattheUniversityofWisconsinHospitalandClinics.Dr.Fleminghasa$567,110grantfromtheNationalMSSocietyandisstudyingtheingestionofwormeggstochangetheimmuneresponseinpatientswithMS.Colleen Hayes,Ph.D,aprofessorattheUniversityofWisconsin-Madison,isresearchingvitaminD’sroleinMSwitha$485,469grantfromtheNationalMSSociety.TherearehigherincidencesofMSfurtherfromtheequatorwheretheexposuretosunlight,andvitaminD,islower.Alexander Ng,Ph.D,fromMarquetteUniversity,hasa$44,000grantfromtheNationalMSSociety,tostudythefactorsthataffectbonestrengthinpeoplewithMS.Heistryingtofindthereasonsbehindthehighriskofdecreasedbonemineraldensity(BMD)inpeoplewithMS.

Get to Know Wisconsin’s Society-Funded Reseachers

Onlyafewmonthsshortoftheirtwo-yearanniversary,theWisconsinChapter’snetworkinggroupforyoungadultswithMSislaunchinganewname,new logo and new markets. Formerly20s/30sCelebrateLife!,thenetworkinggroupforindividualsintheir20sand30s anddiagnosedwithMSisnowcalledGenerationOptimistic.Alongwiththenewnameandnewlogo,the“GO”groupisalsoexpandingtotwonewmarkets:AppletonandWausau.Thesecomplimentexisting GenerationOptimisticgroupsinMadisonandMilwaukee. Whileapproximately60individualscurrentlyparticipateinGenerationOptimisticactivities,thatnumberisexpectedtoincreasewiththeadditionofthenewmarketsandanew,robustannualcalendarofevents.Discussiontopicsforupcomingsessionsrangefrom“What’snewinresearch?”to“Pregnancy

andfamilyplanningwithMS.”NotedneurologistsincludingDr.ChristopherLuzzioandDr.JohnFlemingfromtheUniversityofWisconsinHospitalandClinics,

Dr.MerleTeetzenfromtheAuroraBaycareMSClinic,Dr.DouglasWoofromFroedtertandtheMedicalCollegeandDr.LorenRolakfromtheMarshfieldClinicwillleadseveralofthediscussions. “IwasdiagnosedwithMSinMay2009,andjoinedthe

20s/30sgroupshortlythereafter,”saidLisaMuxworthy,whoparticipatesinMilwaukeeactivities.“Ithasbeenarelieftofindothersjustlikemeandtospendtimewithsuchapositivegroupofpeople.” FormoreinformationaboutGenerationOptimistic,visitwisMS.orgorcall800-242-3358ore-mailmeghan.schnabl@wisms.org.GenerationOptimisticissponsoredbyEMDSeronoandBiogenIdec.

20s/30s Group is Generation OptimisticNetworking Group Launches New Name, New Markets


TheWisconsinChapter’s8thAnnualMSCampforKidsprogramisexpandingin2010toprovidemoreopportunitiesformorechildrenaffectedbyMStohavefun,shareexcitingadventuresandbuildfriendships. ApplicationsarerequiredandmustbesubmittedbyMay24forMinnesota’sCampFriendshipandMay31forWisconsin’sMinnikaniandLakotahcamps.WhiletheWisconsinChapterwillcovercampfeesforthosewhoseapplicationsareaccepted,familiesmustsecuretheirowntransportationtothecamplocations. Tosecureacampapplication,pleasecontactJeremyOtteat [email protected].

Day CampTheYMCA’sCampMinikaniinHubertus,Wisconsinoffersdaycampforchildrenage8to 13yearsold.Campsessionsare8a.m.to5p.m.MondaythroughFridayandrunJune21toAugust7.FormoreinformationaboutCampMinikanivisitMinikani.org.

Overnight CampsTheYMCA’sCampMinikaniinHubertus,Wisconsinoffersone-weekovernightsessionsstartingJune20andconcludingAugust8.Thesessionsareopentochildren ages8-13.Childrenages13-14participateinCampMinikani’stwo-weekExplorersprogram,whichprovidesadditionalexperiencessuchasbackpacking,tentcamping andcanoeing.Anewoptionthisyear,childrenages14-15whohavealready participatedintheExplorersprogrammaysignupforthetwo-weekMasters

Explorerscamp.Moredetailsaboutovernightcampcan befoundatMinikani.org.

CampLakotahinWaupaca,Wisconsinprovidesone-weekovernightsessionsforchildrenages8-15.Threesessionswillbeheldin2010,beginningJuly11andconcludingJuly31.

CampFriendshipinAnnandale,Minnesota(60milesnorthwestof theTwinCities)isopentoyouthwhohavecompletedthethirdgrade uptoage18.Teensage18havetheoptiontoattendasacamperorapply

tobeacounselorintraining.Inadditiontotraditionalexperiences,CampFriendshipprovidesMSeducationsessions.More

informationaboutCampFriendshipisavailableatFriendshipventures.org.

If you’d like to make a donation to

support the MS Summer Camp program, please contact Denise Jendusa at 262-369-7166 or e-mail [email protected].

Two New Locations and Day Camp AddedMS Camp for Kids Options Expand,Include Minnesota ’s Camp Friendship

Subscribe to the Challenge Walk MS Blog. Gettheinsidescooponthislife-changingeventheldinbeautifulDoorCountywhenyousubscribetotheChallengeWalkMSblog.RegularcontributorsandChallengeWalkMSveterans,MikeandJennyEganofPortWashington,touchonallfacetsofthethreeday,50mileevent.Subscribetodaybyvisitingchallengewalkmsdoorcounty.blogspot.com/.

MS Day at the Zoo is September 18. MarkyourcalendarforMSDayattheMilwaukeeCountyZoo.You’llfinddetailsandregistrationinformationattheWisconsinChapter’swebsite,wisMS.org.

Find us on Facebook.Youcansign-uptobecomeafanoftheNationalMSSociety-WisconsinChapteronFacebook.It’sagreatwaytostayconnectedtotheWisconsinChapter’sprogramsandservices.

Wisconsin Chapter Calendar of Clinic Visits. RepresentativesoftheWisconsinChapterregularlyvisitseveraloftheorganization’sofficialclinics.Duringthesevisits,Chapterstaffisavailabletomeetconfidentiallyand answer questions plus share informative literature.Thecurrentscheduleofclinicvisitsisasfollows: • AuroraBaycareMSClinic,GreenBay:4th Fridayofeverymonth. •UWHospitalandClinicsNeurology/MS Clinic,Madison:4thWednesdayofeachmonth. •MarshfieldClinicMSCenter,Marshfield:3rd Tuesdayofeverymonth. •RegionalMultipleSclerosisCenter,St.Luke’s MedicalCenter,Milwaukee:2ndThursdayand 4thMondayofeachmonth. • ProHealthCareNeuroscienceCenter,Waukesha MemorialHospital:4thTuesdayofeachmonth. Call an MS Navigator Today. We’reheretohelpyounavigatethechallengesofMSwithapersonalizedresponsetoyouruniqueneedsduringstandardbusinesshours:Monday-Friday.Pleasecall800-344-4867forpersonalizedservice,up-to-dateinformationandpractical resources and referrals.

Circle of Hope Support Groups. Wisconsinhasmorethan50 support groups and new groups sproutupregularly.Foracompletelistingincludingmeetingdates,pleasevisitwisMS.orgorcalltoll-freeinWisconsin800-242-3358.

Sign Up for the Pick ‘n Save We Care Program. ApercentageofyourgrocerypurchaseswillbedonatedtotheWisconsinChapterbyRoundy’swhenyoujointheWeCareprogramatanyofthecompany’sparticipatingPick‘nSave,CoppsorRainbowstores.TheWisconsinChapternumberis532300.

Assistive Technology Resource Fair Coming to Green Bay.AnAssistiveTechnologyResourceFairwillbeheldMay13attheLambeauFieldAtrium,1265LombardiAvenue,inGreenBayfrom10a.m.to5p.m.TheeventisbeingpresentedbyOptionsforIndependentLivingandisfreeandopentothepublic.Avarietyofexhibitorswilldisplaythemostrecentadaptiveequipmentandassistivetechnologyforpeoplewithdisabilities.Therewillalsobeinformationonrecreation,travel,homemodificationsandmore.Seminarsonrelatedtopicswillbeheldthroughouttheday.Registrationforseminarsisrecommendedbutnotrequired.Informationisavailableatwww.optionsil.comorbycallingSandyPoppatOptionsforIndependentLiving1-888-465-1515ext.179.

Wisconsin Chapter News and NotesThis is How We Move It

Where Do the Dollars Go?

Research andServices

Fundraising

Management and General


Generation OptimisticMadison Meeting April22

Make a Mark for MS Committee Meeting April26

Generation Optimistic Milwaukee Meeting May6

Relationship Matters Seminar in Wausau May8

Generation Optimistic Appleton Meeting May20

MS Summit:Wisconsin Dells May21-22

Make a Mark for MS Committee Meeting May24

Cognitive Meltdown Seminar in Green Bay June5

Generation Optimistic Wausau MeetingJune10

MS Luncheon MilwaukeeJune15

MS Luncheon Madison June16

Wisconsin Chapter Board of Trustees MeetingJune22

Make a Mark for MS Committee Meeting June28

Generation OptimisticMadison MeetingJuly15

Make a Mark for MS Committee Meeting July26

Bike MS: Best Dam Bike RideAugust7-8

Make a Mark for MS Committee Meeting August23

Generation OptimisticAppleton Meeting September2

MS Mud Run September11

MS Day:Milwaukee County Zoo September18

Generation OptimisticMilwaukee Meeting September23

Challenge Walk MS:Door County September24-26

Make a Mark for MS Committee Meeting September27

Wisconsin Chapter Board of Trustees MeetingSeptember28

Generation OptimisticWausau Meeting October7

Make a Mark for MS Committee Meeting October25

Please visit the wisMS.org Calendar of Events for the latest listing of Chapter activities and Community Events.

Wisconsin Chapter Calendar of Events

Relationship Matters Seminar Slated for Wausau. YouandyourspouseorpartnerareinvitedtoattendtheRelationshipMattersseminaronSaturday,May8from8:30a.m.to4p.m.attheHolidayInnHotel&SuitesinRothschild,WI.Theprogramcoverssuchtopicsaseffectivecommunicationstrategies,problem-solvingtechniquesandhowtoworkasateamtomanageMS.Continentalbreakfastandlunchwillbeprovided,andeachcoupleattendingreceivesa$50AmericanExpressgiftcheck.Spaceislimited.RegisteratwisMS.orgbyMonday,May3.

As part of MS Day at the Milwaukee Bucks on March 14, Team Captain Andrew Bogut, left, received the game ball from Chuck Scherwinski, center, and his son Andy Scherwinski.

Chuck is the top fundraiser for Bike MS: Best Dam Bike Ride and Andy is captain of Chuck’s Athletic Supporters, one of the event’s top bike teams.

MS Awareness Week Featured Bucks


MS Connection is a publication of the National Multiple Sclerosis Society - Wisconsin Chapter.For information or to share story ideas, please call 262-369-4431. Editor: Cindy Yomantas, Art Director: Amy Malo

wisMS.org • Toll Free 1 800 242 3358 • 262 369 4400

Non-Profit OrganizationU.S. Postage

Milwaukee, WI 53202Permit No. 2868

PAID1120 James Drive Suite A Hartland, WI 53029

Mailing Label ChangesPleasechecktheappropriateboxbelow,correctthelabelandreturntotheWisconsinChapter. Namechangeormisspelled Addresschange Removefrommailinglist Receivedmorethanonecopy PleasesendmemyMSConnection viae-mail.Mye-mailaddressis:__________________________________________

The event will challenge you.The experience will change you.

Door County Challenge Walk MS3 days. 50 miles. A world free of MS.September 24-26, 2010challengewalkMSwi.org

PhotoCourtesyofDoorCounty.com/DoorCountyVisitorBureau

ms connection - spring 2010

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