spring 2011 msconnection lone star
Post on 29-Mar-2016
219 Views
Preview:
DESCRIPTION
TRANSCRIPT
Spring 2011
M o v i n g T o w a r d a w o r l d F r e e o F M S
AdvocacyMaking our voices Heard
ResearchUnstoppable achievements
ProgramsClass is in Session
Eventsrolling and Strollingfor a Cure
We’re on the Move across the Lone Star State
We’re on the Move across the Lone Star StateAdvocacyMaking our voices Heard
ResearchUnstoppable achievements
ProgramsClass is in Session
Eventsrolling and Strolling for a Cure
The official magazine of theNational Multiple Sclerosis Society: Lone Star
Amarillo • Austin • Dallas • Fort Worth • Houston • Lubbock • Midland • San Antonio
1-800-344-4867
Board of Trustees ChairmanBRAd RoBBinS
SecretaryERnEST JoHnSon
TreasurerGERALd MERFiSH
Regional Executive Vice PresidentMARk nEAGLi
MSConnection EditorJAMES BLAck
© 2011 National Multiple Sclerosis Society: Lone Star
The National Multiple Sclerosis Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The National Multiple Sclerosis Society assumes no liability for the use of contents of any product or service mentioned.
Information provided by the Society is based upon professional advice, published experience and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. The National Multiple Sclerosis Society recommends that all questions and information be discussed with a personal physician.
We mobilize people and resources to drive research for a cure and to address the challenges of everyone affected by MS.
if You or SomeoneYou Know Has MS
Studies show that early and
ongoing treatment with an
Fda-approved therapy can
reduce future disease activity
and improve quality of life for
many people with multiple
sclerosis. Talk to your health
care professional or contact
the national MS Society at
nationalMSsociety.org or
1-800-344-4867 to learn
about ways to help manage
multiple sclerosis and about
current research that may one
day reveal a cure.
MS SToPS PeoPleFroM Moving
we eXiST To MaKe SUre iT doeSn’T. Join THe MoveMenT
The Official Magazine of the National Multiple Sclerosis Society: Lone Star
The Official Magazine of the National Multiple Sclerosis Society: Lone Star
we’re
24Why We Move: Personal Stories Inspire Walkersand Cyclists
10South Central Celebrates Unstoppable Achievements at 2011 Annual Meeting
21Horseback Therapy Riders Saddle Up for Rodeo Challenge
34Get Moving with Wellness Classes Near You
Letter from the Editor . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4
‘Amazing Race’ Star Hosts Amazing Movie Premiere in Dallas . . . . . . . . . . . . . . . . . 5
San Antonio Gets Chili at Dahill’s Cook-Off . . . . . . . . . 5
Activists Take Their Message to the Capitol For Texas Public Policy Conference 2011 . . . . . . . . . . . 6
Empowered Activist Speaks Out toHelp Texas Families . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7
Society Honors Congressman William “Mac” Thornberry as Representative of the Year . . . . . . . . . . . . 8
Event Partners ChampionMeaningful Relationships . . . . . . . . . . . . . . . . . . . . . . . . 14
Volunteering Has Special Meaning forMother and Daughter Team . . . . . . . . . . . . . . . . . . . . . . 15
Cyclists with MS Share Pedal Power . . . . . . . . . . . . . . 16
Prolific Running Back Earl CampbellScores with Society Teamwork . . . . . . . . . . . . . . . . . . . 18
Champ Camp is Life-Changing Event for Teen . . . . . . 20
Entrepreneurial Spirit Fast Forwards Exercise DVDs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 30
Texans Love a Good Party . . . . . . . . . . . . . . . . . . . . . . . 32
Houstonian Jim Mills Named2011 Person on the Move . . . . . . . . . . . . . . . . . . . . . . 33
MS Eye CARE Honored as Company on the Move . . . . . . . . . . . . . . . . . . . . . . . . . . 33
Call, Listen and Live Better with Society’s Monthly Teleconferences . . . . . . . . . . . . . . 41
Society Recaps High-Impact Research Progress . . . . 42
Pediatric Centers of Excellence PublishFindings on Children with MS . . . . . . . . . . . . . . . . . . . 45
Nerve Repair Teams Report “Remarkable” Results . . 46
Study: Risk of First Neurologic EventDecreases with Sun Exposure and Vitamin D . . . . . . 49
Researchers Report CCSVI Project Progress . . . . . . . . 50
The Official Magazine of the National Multiple Sclerosis Society: Lone Star
The Official Magazine of the National Multiple Sclerosis Society: Lone Star
TABLE OFconTEnTS
Spring 2011VoLuMe 5 • ISSue 2
MovinG ToWARd A WoRLd FREE oF MS 3
Moving the Mission Forward throughWords and Actions
F r o M T H e e d i T o r
What moves you?
Moving is something you hear a lot from the Society: Move it. Join the movement. Take action. Moving is who we are. So we’ve made moving the unifying theme for this spring issue of MSConnection.
Moving words and actions are woven into the fabric of the Society’s mission by get-up-and-go-getters such as:
• AdvocateKimCampbell,makinghervoicepowerfully heard in the halls of power
• CyclistRonBranniganandadynamicgroupofriders who are not letting MS slow them down
• FootballgreatEarlCampbellandhissonTyler,taking the ball and running with it for MS awareness
• HorsebackcompetitorMarlysPicinich,saddlingup for a rodeo challenge in Fort Worth
• Dr.ElliottFrohmanwithTheUniversityofTexasSouthwesternMedicalCenteratDallas,sharingimpressive research on optics and MS
• Dr.JerryWolinskyandhiscolleaguesfromTheUniversityofTexasHealthScienceCenteratHouston,advancingresearchintoanexcitingnewrealm of MS study
• Dr.GeorgeHutton,sharinghisexpertinsighton current and upcoming research at the 2011 AnnualMeetinginTulsa,Okla.
• “TheAmazingRace”hostPhilKeoghan,bringingabigmissiontothebigscreeninBigD
• TeenBriannaPoche,rememberingherfirstlife-changing visit to Champ Camp for children living with MS
They are some of the dynamic movers who share their engaging stories in this edition of MSConnection.
Inturn,Ihopethisissuemovesyou:Toshareitwithothers.Toadvocate.Tovolunteer.Togetinvolved.Todonate.Torealizethatitonlytakesonepersontomakeadifferenceinthelivesofthousands–andthatpersonis you.
Keepreadingandkeepmoving!
James BlackMSConnection Editorjames.black@nmss.orgNational MS Society8111N.StadiumDrive,Ste.100Houston,TX77054
MSConnection • SPRinG 20114
TeamDahillheldthe1stChiliCook-OffbenefitingtheNationalMSSociety in February. The cook-off fundraiser was simmered to perfection atDahill’sheadquartersinSanAntonio.MorethansixchefsdisheduptheirtastyTexaswaresandmorethan30chiliconnoisseursbelliedupforaservingortwo.Inall,TeamDahillraisedmorethan$350tosupportMSresearch and services.
We love when readers contribute their stories to MSConnection. Your storyhasthepowertoinspire,motivateandmoveothers.Thisisyourforumtoshareyourvoice.Thisquarterlymagazinereachesthousandsofpeoplelivingwithmultiplesclerosis,theirfamilies,healthcareprofessionalsandothersacrossTexas. Tocontributeyourstory,storyideasorphotos,contactMSConnection Editor James Black at james.black@nmss.org.
Becauseofbudgetconstraints,theWinter2011issueoftheLoneStarMSConnection was available as an online-only edition. You can still view it online by visiting JointheMovementLoneStar.org and clicking “AboutUs”intheleft-handnavigationbar,then“MSConnection.” The winter online edition featured photos from the 2010 Family DiscoveryCamp;researchupdatesonmeditationbenefits,footdrop
andseasonaldiseaseactivity;andprofilesofdonorJackEnlow,WalkMSteamKristi’sKrusadersandcorporatepartnerKBR.
Approximately 400,000 Americans have multiple sclerosis. every week, about 200 people are newly diagnosed. Worldwide, MS affects about 2.5 million people. The Centers for Disease Control and Prevention (CDC) does not require u.S. physicians to report new cases and, because symptoms can be completely invisible, the numbers can only be estimated.
PhilKeoghan(center),hostofCBS-TV’s“TheAmazingRace,”wason-handFeb.17fortheDallaspremiereofhisfilm“TheRide.”Theeventwasasold-outsuccess,with245peopleinattendanceand$3,315raisedfortheNationalMSSociety.“TheRide”chroniclesKeoghan’s40-daybicyclerideacrosstheUnitedStatesin2009,coveringmorethan3,500milestoraise funds and awareness for the Society.JoiningKeoghanfromtheSocietywere(below)NorthTexasVicePresidentFrankTimmonsandSeniorDirectorofDevelopmentJessica Woodward.
‘Amazing Race’Star Hosts Amazing Movie Premierein Dallas
Clicking on the magazine itself will enlarge the pages for easy viewing.
San Antonio Heats up at Dahill’s Cook-off
Missed the Last Issue?
Share Your Story in the Next MSConnection
How Many People have MS?
MovinG ToWARd A WoRLd FREE oF MS 5
a d v o C a C Y
Activists Take Their Message to the Capitol for Texas Public Policy
Conference 2011
by Linnea Nasman
MSConnection • SPRinG 20116
OnMarch1,morethan60MSactivistsfromacrossTexasjoinedtogetherandmetwiththeir
legislatorsinAustin,bringingtheirstoriesandvoicestothe State Capitol. Activists personally visited more than 80 legislative offices,agreatsuccessthatdemonstrateshowtheircollective efforts help shape policies and champion the rights of people with disabilities and MS. Thisyear,activistspromotedtwokeyissuesofimportance to the MS community: • Supportinglegislationtoprotectconsumers
againstunexpectedincreasesinprescriptiondrugcost-shares.
• PreventingbudgetcutstoMedicaid,healthandhumanservices,andtheCommunity-BasedAlternatives(CBA)program.
WhileMSactivistsmadetheirmarksinAustin,everyone can take action at home. Contact lawmakers throughletters,e-mails,faxesorphonecalls.Calllocaltalk radio programs. Speak out in favor of policies that support funding for research that will move us closer to ending MS. Forinformation,visittheSociety’slocalwebsiteatJointheMovementLoneStar.org/advocacy.
LinneaNasmanistheProgramsandGovernmentAffairsCoordinatorwiththeSociety’sAustinoffice.She can be reached at linnea.nasman@nmss.org.
KimCampbellknowsfirst-handthetollthatmultiple sclerosis can take on a family. When she
tellsherstory,peoplelisten.HereisKim’sMSactiviststory: “Thisyear,becauseofthepoliticalandeconomicclimate,itismoreimportantthanevertoadvocateforchange.Whentimesaretough,programsthatsupportTexansaremoreimportantthanever.Peoplewanttogetthesupporttheyneedintheircommunities so they can stay at home. Thirty-threeyearsago,whenmyhusbandGaryandIsaid,‘Ido,’wehadnoideathatMSwouldbecome a part of our lives. We know what it’s like to need respite care. We know what it’s like to have to stay home from your work because you have to care
foryourspouse.Weknowwhatit’sliketobefiredfrom a job you loved because your FMLA ran out. It was these events that make issues like respite care andbudgetcutspersonal.Luckily,theNationalMSSociety showed us how to advocate for change. GarytestifiedlastsessionandIrecentlytestifiedfortheHousesubcommitteethatdecideshowtofund home- and community-based services. This was so empowering to both of us. We would like to be able to continue our work and to help others do the same. We tell our story not because we want your sympathy,butbecausewewanttohelpTexasmoveforwardandkeepfamiliesfrombeingtornapart.”
Empowered ActivistSpeaks Out to Help Texas Families
MovinG ToWARd A WoRLd FREE oF MS 7
Eachyear,theNationalMSSocietyrecognizeselectedofficialswhohaveworkedtoimprove
the lives of people with multiple sclerosis. These legislatorssupporttheSociety,ourregion,ourpolicyprioritiesand,mostimportantly,peoplelivingwithmultiple sclerosis. CongressmanWilliam“Mac”ThornberrywashonoredwiththeSociety’s2010RepresentativeoftheYearAwardduringtheSociety’sNationalPublicPolicyConferenceinWashington,D.C.inearlyMarch. Thornberry is an inspirational member of the CongressionalMSCaucus.Headvocatesforaccesstosafeandeffectivemedications,andintroducedthePart-DOff-LabelPrescriptionParityActthatwouldallow Medicare coverage of medication prescribed for an off-label use when such use is supported by peer-reviewed medical literature. GailLindsey,ProgramsandServicesManager
intheSociety’sAmarillooffice,said,“CongressmanThornberry makes it a priority to meet with MS activists in his district and learn their concerns andneeds.Hehasareputationforlisteningtohisconstituents and has always been willing to do whatever he can to provide local support for the Society,includinghelpingwithfundraisingeffortsandmeetingwithactivistswhilein-district.” Thornberry actively seeks input and desires to collaborate on policies that improve the lives of people living with MS. The Society thanks Congressman Mac Thornberry for actively working to drive the MS mission.
LinneaNasmanistheProgramsandGovernmentAffairsCoordinatorwiththeSociety’sAustinoffice.She can be reached at linnea.nasman@nmss.org.
SocietyHonorsCongressmanWilliam“Mac”ThornberryasRepresentativeoftheYearby Linnea Nasman
MS Activists Judy and Steve Rogers met recently
with Rep. William “Mac” Thornbury (center).
MSConnection • SPRinG 20118
• Become an MS Advocate: Join the MS AdvocacyActionNetwork.Respondtooccasionalcallstoactionwithe-mails,lettersandphonecallstopolicymakers,andreceiveadvocacy updates and e-newsletters on vital MS policy issues.
• Become an MS Issue Ambassador: Make two in-person visits or more per year to legislators,inadditiontoAdvocacyActionNetwork activities.
• Contribute to the MS Story Bank: Share your personal story about challenges you have encountered;withyourpermission,storieswill be used to raise greater awareness of MS policy issues.
Join the Movement
and Get Involved
MS doesn’t wait and neither should you. visit us online at JointheMovementloneStar.organd click the advocacy link inthe left-hand column. You’ll learn more about our advocacy effortsto help americans living withMS and how you can make a difference, for example:
MS SToPS PeoPle FroM Moving
we eXiST To MaKe SUre iT doeSn’T. Join THe MoveMenT
Residentsacrossfivestatesgotconnectedinanewway in the new year. The National MS Society’s 2011 South Central ConferenceandAnnualMeetingwasthefirsttobebroadcast live over the Internet. Webcast from host cityTulsa,Okla.,theJan.29eventmarkedthelatestadvance in keeping everyone affected by multiple sclerosis plugged in to the Society’s achievements and happenings. The2011AnnualMeetingalsomarkedthefirstunited forum of its kind for the Society’s South Central statesofTexas,Oklahoma,Louisiana,ArkansasandNewMexico.ThestateshaveunitedtotackleMShead-on and to better help everyone affected by this unpredictable disease. SouthCentral’sfive-statepartnershipserves
morethan80,000peoplein438countiesinTexas,Oklahoma,ArkansasandNewMexico,andin64parishes in Louisiana. Inadditiontothemeeting’sbusinessportion,duringwhichtheSouthCentralslateofofficersandboardmemberswasapproved,theJanuaryeventwasanopportunitytocelebrateandreflectontheorganization’slocalachievementsin2010.
Achievements in Programsand Services
TheSociety’sProgramsandServicesbranchoutintomanyareastosupport,informandenrichthelivesofeveryonewithMS.Thisisachievedthroughresearch,financialassistance,scholarships,campsandsocial
South Central Celebrates UnstoppableAchievementsat 2011 Annual Meetingby James Black
we’re
MSConnection • SPRinG 201110
activities,wellnessprograms,careercounseling,educationalprograms,clinicalpartnerships,informationandreferralservices,caremanagement,Self-HelpGroups,andadvocatingfortherightsofpersons affected by MS.
• In2010,throughSouthCentral’sScholarshipProgram,31scholarshipswererenewedand37newscholarshipapplicationswereawarded,totaling$131,000.ThisprogramassistedfamiliesandindividualsaffectedbyMSbyfinanciallysupportingeducationalgoals,and,inturn,helpedengageyoungpeople–includingmanyup-and-coming doctors and researchers–intheongoing work of the National MS Society.
• SouthCentralprovided$455,000to its vital network of MSclinics,helpingenhance health careforthe16,300patients served.
• Inayearaseconomicallychallengingas2010,theDirectFinancialAssistanceProgramwasalifeline for providing help to maintain personal health,safetyandindependence.Whentheyhadcritical needs that could not be met through their ownmeansorothercommunityresources,1,101individuals and families living with MS turned to the Society and were served by this program throughnearly$363,000infinancialassistance.
• Recreationalandwellnessprogramshelped550families from around the region enjoy Family Fun Daysatbaseballgames,museumsandamusementparks,whilemorethan1,600individualsparticipatedin2010SocialPrograms.
• SouthCentralhostedfivecampsandtwoMSgetawaysfor533individualsin2010.
• Nearly2,700individualsengagedtheirbodies,mindsandspiritsbytakingpartin33ongoing
wellnessprogramsinyoga,Pilates,aquatics,physicaltraining,therapeutichorsebackridingand art therapy.
• Morethan3,400personsattendedweeklyassistedphysicaltrainingsessionsintheDallasandFortWorthoffices.Eachsessionincludedstretchingexercises,lightweightresistancetrainingandbreathingtechniquesunderthedirectionofacertifiedpersonaltrainer.
• Morethan100Self-HelpGroupswereavailablein-person,onlineandbytelephonetoconnect
regional residents with others in welcoming environments.
•In2010,SouthCentral was down-right neighborly with theDayofServiceandNeighbor to Neighbor programs. These initiatives engaged volunteers to help persons with MS with
householdchores,homemaintenanceandyardwork.
• ThePlanningWiseprogramprovided90-day,one-to-oneconsultationsforfinancialplanningand career coaching for those with MS who have recently lost or are at risk of losing employment or are considering a career change.
• ThroughitsInformationandResourceCenter,SouthCentralservedmorethan5,000membersandgeneratednearly12,000interactions,providing immediate assistance for information aboutMS,programsandreferralstocommunityresources.
• In2010,MSactivistsmadetheirvoicesheardin the halls of power. Enthusiastic activists sent thousands of personal e-mails to state and national legislators;testifiedatlegislativehearings;madein-personvisitstostateandfederallegislators;
The entire one-hour 2011 South Central annual Meeting program video can be viewed online. visit JointheMovementloneStar.org,
click “Programs and Services” in the left-hand navigation bar, then click
“2011 annual Meeting.”
MovinG ToWARd A WoRLd FREE oF MS 11
and worked in their communities to champion the rights of people with disabilities. Legislative successcamewiththepassageofaTaxCheck-OffbillinLouisianaandOklahoma,allowingtheNationalMSSocietytobelistedonincometaxforms,givingeachtaxpayertheopportunitytodonate one dollar or more to the Society.
Achievements in Developmentand Fundraising
In2010,SouthCentralcitizenssteppedup,got on a roll and took it to the streets for the MS mission.
• Morethan50,000eventparticipantsinTexas,Oklahoma,Louisiana,ArkansasandNewMexicolaced up for a Walk MS event or saddled up for a BikeMSride.Ofthose,nearly2,300peoplelivingwith MS participated in Bike MS and Walk MS events,rollingandstrollingalongtoraise$1.18million last year.
• Corporatepartnershipsgeneratedmillionsofdollars to underwrite South Central event costs. Forinstance,theSociety’spartnershipwithApacheprovidedanew$10,000presentingsponsorship for Midland’s Bike MS: Cactus and Cruderideand,intotal,$30,000insponsorships.ToyotaGulfStates’three-yearpartnershipincludes support vehicles for use during fundraisingeventsand,in2013,cashsponsorshipinOklahoma,LouisianaandTexas.Inaddition,the largest South Central sponsorship has been builtwithPfizerprovidingnearly$132,000incashsponsorshipforunderwritingLouisiana,OklahomaandTexaswalks;Pfizeralsowillsupport four South Central Bike MS rides.
• Thousandsofdonorslentpersonalsupportthroughindividualandmajorgifts.Forexample,SteveandAmberMostynofHoustonsupportedMSadvocacywithan$88,000gift;RossandKarenMilesofSanAntoniomadea$50,000gift to MS research and set a national challenge whichgenerated$200,000;andtheJackEnlowestate included the Society in planned giving that resultedina$424,000gifttosupportservices.
• Morethan30eventsacrosstheregionweredrivenbyvolunteerswhoplanned,fundedandpromotedinitiatives to raise money and awareness. These creative endeavors ranged from down-home barbecuesinVanAlstyne,TexasandaDallasMoversandShakersGolfTournamentthathascumulativelyraised$150,000ineightyearstoOklahoma’sship-shapeAnnualCloseMSRegattaandThetaXiFraternity’sGreekOlympicsatLouisianaStateUniversityinBatonRouge.
Achievements in Research
Dr.GeorgeHuttonwastheguestspeakerforthe2011 Annual Meeting. As the current chairman of the ClinicalAdvisoryCommittee,DirectoroftheMSClinicatBenTaubGeneralHospitalinHoustonandAssistantMedicalDirectorattheMaxineMesingerMultipleSclerosisComprehensiveCareClinic,BaylorCollegeofMedicine,Dr.Huttonhasanextensivebackgroundinresearch,educationandcontributiontothecareofpersons with MS. Hesharedinsightonthreetopresearchachievementsin2010:approvalofthefirstoraldisease-modifyingtherapyforMS,approvalofthefirstandsecondsymptomatictreatmentsforMS,andgreaterrecognitionofexposurefactorsinMS,suchassmokingandvitaminD. Inaddition,Dr.Huttonprovidedalookaheadatresearchinthepipelinefor2011,includingabriefdiscussion of stem cell therapies and myelin repair. Dr.Hutton’sinformativepresentation,hisanswerstoquestionssubmittedduringtheevent,andtheentire one-hour Annual Meeting program can be viewedonline.VisitJointheMovementLoneStar.org,click“ProgramsandServices”atthetopoftheleft-handnavigationbar,thenclick“2011AnnualMeeting”to watch the video and presentation. Togetherandacrossfivestates,SouthCentral’s2011AnnualMeetingshowcasedthepositive,powerful change taking place in the Society’s virtually unstoppable mission.
JamesBlackistheeditorofMSConnection.Hecanbe reached at james.black@nmss.org.
MSConnection • SPRinG 201112
The National Multiple Sclerosis Society’s unstoppable mission occurs in large part thanks to strongvolunteerleadershipatthehighestleveloftheorganization,theSouthCentralBoard
ofTrustees.TheFiscalYear2011slateofofficersandboardmemberswasapprovedattherecentAnnualMeetinginTulsa,Okla. Asavolunteer-drivennonprofitorganization,theSocietyisindebtedtotheseleadersfortheirtime,talentsanddedicationinservingothers:
South Central Board of Trusteesnamed for 2011
oFFicERS Brad Robbins,Chairman,Houston,TXErnest Johnson,Secretary,PMRealtyGroup,Houston,TXGerald Merfish,Treasurer,MerfishPipe&SupplyCo., andPipeExchange,Houston,TX
BoARd MEMBERSDavis Baldwin,GulfCoastToyota,Austin,TXPatti Barker,OklahomaBloodInstitute,Tulsa,OKRuss Bookbinder,TexasTechUniversity,Lubbock,TXWilliam Bradley, M.D.,NeurologyAssociatesof ArlingtonPA,Mansfield,TXWilliam Byerley,PricewaterhouseCoopers,Houston,TXDavid Carder,CowenConstruction,Tulsa,OKMarshall Cohen,ConocoPhillipsInc.,Houston,TXDoug Coy,AttorneyatLaw,LittleRock,ARLaura DiStefano,FortWorth,TXLisa Dollinger,ClearChannel,SanAntonio,TXScott Duggins,NewOrleans,LAPacky Evans,DillinghamInsurance,Edmond,OKMichael S. Fagan,LeagueCity,TXI.D. Freed, R.Ph.,AskthePharmacist,Houston,TXAmy Gutierrez, M.D.,LSU-HealthScienceCenter, NewOrleans,LATrevor Hale, Ph.D.,UniversityofHouston-Downtown, CollegeofBusiness,Houston,TXJim Harvey,AbbottHoldingsLLC,Dallas,TXJane Heidingsfelder,JonesWalker,NewOrleans,LAStephen K. High,Gartner,SanAntonio,TXGeorge Hutton, M.D.,MaxineMesingerMSClinic, Houston,TXKep Kepner,Kepner&Company,Dallas,TXThomas G. Krentel,KrentelManagementServices, NewOrleans,LAJamie Lathrop,MorganStanley,OklahomaCity,OKMelanie Lawson,KTRKTV,Houston,TX
Benjamin Levy, M.D.,Albuquerque,NMDoug Levy,imc2,Dallas,TXDon McCormick,ConchoResources,Midland,TXMark McLeland,MerrillLynch,FortWorth,TXBrook Minx,Donato,Minx&Brown,Houston,TXMarisha Moore,BlueCrossBlueShieldofOklahoma, Cleveland,OKJames M. Morris,Edmond,OKMike Murphy,Deloitte&Touche,FortWorth,TXHenry noey,AONRiskServices,Houston,TXJohn norden,Deloitte&Touche,Austin,TXKevin o’Sullivan,MIRATECHHolding,LLC,Tulsa,OKMike Palamone,UrbanSystemsAssociatesInc., NewOrleans,LAGabriel Pardo, M.D.,MSCenterofOklahoma, OklahomaCity,OKMimi Parsons,FrostBank,Houston,TXJohn Pearson,Houston,TXDavid Peters,PeoplesBank,Albuquerque,NMSue Porretto,ProvidentEnterprises,Houston,TXDonald e. Pritchard,Metairie,LADwight Riskey,RiskeyBusinessSolutions,LLC,Dallas,TXCarla Rosenberg,SCAPromotions,Dallas,TXRana Russell,NewBraunfelsRuralHealthClinic, NewBraunfels,TXJodi Lee Ryan,Arlington,TXDoug Sanders,SynergyBank,FortWorth,TXRichard Sertich,GoodmanRealtyGroup,Albuquerque,NMStephen S. Speier,FKM,Houston,TXAustin J. Sumner, M.D.,NewOrleans,LADavid Tabor,AffiliatedAssetManagers,Inc.,Thibodaux,LA Jim Tidwell,WEDGEGroup,Houston,TXLaura Vaccaro,ValeroEnergyCorporation,SanAntonio,TXJill Wasserstrom,BuffaloSpecialties,Houston,TXWayne Ziegler,SemMaterials,Austin,TX
MovinG ToWARd A WoRLd FREE oF MS 13
Whenpeoplethinkaboutcorporatesponsors,the perception could be that the company’s
involvementisonlyfortaxbenefits.TheNationalMultiple Sclerosis Society seeks out corporate partners that want a meaningful relationship to meet the goals of the event which will make a true impact on moving us one step closer to stopping MS. Many corporations work closely with Bike and Walk MS events to associate themselves with items within the events that have a direct correlation to educating,creatingMSawarenessorassistingclientswith day-to-day activities. Forexample,NobleEnergyunderwritestheMSChampionsbandanasprogram,whichisanotherway to help walkers and cyclists stay focused on the mission. These orange bandanas are available for event participants to have signed by their MS Champions and carry with them on each event route. KnowingthattheyareridingorwalkingfortheirMSChampions moves participants closer to the goal. Inaddition,TheScooterStoreoffersauniqueopportunity to play a role in the day-to-day lives of people with MS. This partnership does not directly
supporttheeventsinwhichtheysponsor;instead,TheScooter Store donated scooters which assist clients across the region in moving easier. Education and awareness of MS are the focus ofmanyeventsponsors.PfizersupportstheMSExperiencelocatedatWalkMSevents.Thiseducational tool offers fundraisers a practical hands-onexampleofsomeofthesymptomsofMS.DuringMSAwarenessWeek,partnerslikeLupeTortilla,Visible Changes and My Fit Foods place informational brochures and posters in their retail locations for people to learn about MS. It is the goal of the National MS Society to continuetofindcorporatepartnersthatwanttosupportourfundraisingevents,andtobringaboutsocial consciousness and assistance for the people we serve. It is our combined hope that their vital support will make the end of MS a reality.
CalvinPollardIImanagescorporatepartnershipswith the National MS Society. Based in the Society’s Houstonoffice,hecanbereachedatcalvin.pollard@nmss.org.
EventPartnersChampionMeaningfulRelationshipsbyCalvinPollardII
MSConnection • SPRinG 201114
ThereisanAfricanproverb:“Ittakesavillagetoraiseachild.”AttheNationalMultipleSclerosisSociety,
wehaveourownadaptation:“Ittakesavillagetoputonanevent.”Sometimeswehaveachancetoblendthose two adages into a winning combination. NationalCharityLeague(NCL)isamother-daughterorganizationthatheavilysupportsourNorthTexasWalkMSandBikeMSevents.Whetherhelpingsetupaneventsite,registeringparticipantsorworkingabikereststop,themother-daughterteamsareenthusiastic and unfailingly dependable. NCL provides opportunities for members to experiencecommunityservice,educationalandcultural activities as a team. The mothers involved understand the importance of instilling tolerance and kindnessintheirdaughters,ourfuturecommunityandworldleaders,andthegirlsgetachancetomakefriends who share the same values. The Society is honored to collaborate with mothers in teaching their daughters what it means to be civic-minded young adults. Our collaborations are alwayssuccessfulandsometimesabsolutelyamazing. Forinstance,ReneeBrownandherdaughterAshtonhavebeeninvolvedinNCLforfiveyears.Volunteering for Society events has a special meaning forthisdynamicduo.Renee’shusbandRodney,a
topfundraiserforNorthTexas’BikeMS:Sam’sClubevent,wasdiagnosedwithMS17yearsago.Hisperseverance and involvement serve as inspirations for his wife and daughter. Ashtonsaid,“Itisreallyneattothinkthatthesmallpart we play in serving as volunteers and raising money maysomedayhelptofindacureforMS.” SaidRenee,“Theexperienceofvolunteeringforvarious philanthropies through NCL has been a great experience.Ofalltheorganizationswehaveserved,this one has been by far the most meaningful for us as a family affected by MS. I remember being at the WalkMSforthefirsttimeandseeingallthevolunteersgetting set up on a very early and very cold morning. I could not believe how many were there to help. “Asthesuncameupanditcametimeforthewalktobegin,Iwatchedashundredsofpeoplewalked,somewiththedisabilitiesthatMScanbring,”Reneecontinued.“Irememberbeingfloodedwithanoverwhelming sense of gratitude that all these people werehereunitedinonepurpose:tostopMS.”
LeeKilbornistheCommunityDevelopmentManagerintheSociety’sDallasoffice.Shecanbereachedatlee.kilborn@nmss.org.
VolunteeringHasSpecial Meaningfor Mother and DaughterTeambyLeeKilborn
MovinG ToWARd A WoRLd FREE oF MS 15
Cyclists with MS Share Pedal Power on road to a Cure
Cyclists with MS Share Pedal Power on road to a Cure
by James Black
MSConnection • SPRinG 201116
Because We Can is a group of cyclists living with multiplesclerosis,comprisingmenandwomenof
different ages and abilities. Their bond is the shared passiontostayactiveandmaintainahealthy,positiveoutlook despite the daily speed bumps of MS. The aptly-named group got on a roll in October 2009,thankstoBikeMSparticipantsandtopfundraisersRonBranniganandJohnPearson.Thetworiderstooktheirideaforavibrant,alternateformofsupportforcyclistswithMSanditgainedmomentum,growingfromitsoriginalrosteroffivepeopletomorethan 20 today. Brannigan,a10-yearveteranofthe180-mileHouston-to-AustinBPMS150,seesthiscycling
revolution as a vital evolution for the MS community. “WhentheNationalMSSocietystarted,
people with MS didn’t have a lot of medications to help manage symptoms. Now that we have medications,thequalityoflifehasevolved,”Brannigansaid.“Qualityoflifewillonlycontinue to improve. We’re showing that MS and a healthy lifestyle aren’t two mutually exclusivethings.” Because We Can members meet monthlytonetworkandsocializeatBayou City bike stores such as Sun and Ski SportsandBikeBarn.Theystagequarterlyorganizedrides,barbecuesandsocialget-togethers,andalsovolunteeratSociety-driven
events such as camps for families with MS. GroupparticipantstrainfortheSociety’s
annual Bike MS fundraising rides throughout Texas.FourBecauseWeCanmembers–
Brannigan,Pearson,MattMcAughanandKarlaZielke–madetheBPMS150’sClub300oftopfundraisers,raisingmorethan$5,700eachduringthe2010ride.Together,thefourcyclistsraisednearly$40,000. Throughsuchcyclingandfundraisingefforts,Because We Can harnesses its members’ collective energiesandtalentstoserveasapositiveexampleto
theMScommunity,especiallythenewlydiagnosed. “That’sourtruemeasurement:howwe’remakingapositiveimpactinthelivesofotherswithMS,”Brannigan said. Anunexpectedbenefithasbeentheinvolvementof members’ spouses and families. “MScrossesallboundariesandthisgroupgivesfamily members an opportunity to talk with others. Spouses of people with MS are able to share with other spouses who are learning how to cope with this diseasethataffectstheentirefamily,”Brannigansaid. Through a valuable initiative started with the help ofthelateDr.DougCarmichael,membersalsosportcycling jerseys that boldly let other riders know they are moving forward one mile at a time while living productively with MS. Sponsor Molly LLC currently underwritescostsforthejerseysemblazonedwith“IhaveMS,thisiswhyIride.” Brannigan has traveled his own journey since disclosing his diagnosis to friends and co-workers two years ago. “MylifehasopenedupasaresultofMS,withsomuchoutpouringofsupport,pureloveandunderstanding,”Brannigansaid.“Ihavemetsomanygreat folks and so many who have connections to MS. To see the strength some have at overcoming adversity hasbeenaninspiration.” AnMSdiagnosiscanbeanuphillchallenge,buthills and challenges are just another day in the saddle for these Lone Star cyclists. “BecauseWeCanhasreallymadeadifferenceinmylife,”Brannigansaid.“Tobearoundpeoplewithahealthylifestyleandtobeanexampletoothers,it’s been very rewarding. Life’s too short to spend it withoutmakingadifference.”
For more information on the Because We Can cycling group,visitbecausewecanMS.orgorsendane-mailtobecausewecanMS@yahoo.com.
JamesBlackistheeditorofMSConnection.Hecanbereached at james.black@nmss.org.
Because they can, Houston-area cyclists are actively changing the way people see the face of MS.Cyclists with MS
Share Pedal Power on road to a Cure
Cyclists with MS Share Pedal Power on road to a Cure
MovinG ToWARd A WoRLd FREE oF MS 17
Tyler CampbellDiagnosedin2007
MSConnection • SPRinG 201118
Thisspring,footballlegendEarlCampbellreturnstothefieldwiththegoalofstoppingMS.
With the help of some classic characters from WarnerBros.animation,theformerrunningbackfortheHoustonOilersandNewOrleansSaintsis‘tooningupinanautographed,custom-framedAnimationArtLimited Edition piece to be released through Warner Bros. This special lithograph will raise funds in honor ofhisson,TylerCampbell,throughtheProPlayerFoundation in partnership with the National Multiple Sclerosis Society. Likehisfather,TylerCampbell,24,wasarunningback,playingforSanDiegoStateUniversityin2006and2007.DiagnosedwithMSin2007,Tylerhassince become an active Society ambassador in his homestateofTexasandispassionateaboutraisingawareness to help others living with the disease. “IviewmyMSdiagnosisasablessing,”Tylersaid.“Inowhavetheopportunitytosharemyexperiencetohelp others living with this disease and make an impact ontheMScommunity.” Tyleristeamingwithhisfather,whomadehisownlegendaryimpactinfootballrecordbooks.ProFootballHallofFamememberEarlCampbellwasoneof the most powerful runners in National Football League history. Although the gridiron star rushed for morethan1,000yardsinfiveofhisfirstsixseasons,hisfinestseasoncamein1980,whentheformerHeisman
Trophywinnerranforanincredible1,934yards,the second best rushing performance in pro football history at the time. FormerOklahomaSoonersandDallasCowboyscoachBarrySwitzeroncecalledEarlCampbell“thegreatestplayerthateversuitedup.” The Oilers’ and Saints’ star now joins an elite sports club of pro athletes honored by Warner Bros.,includingSaintsquarterbackDrewBrees,famedChicagoBullsplayerMichaelJordan,boxinglegendMuhammadAli,BostonRedSoxpitcherTimWakefield,DerekJeteroftheNewYorkYankeesandhockeystarWayneGretzky.ThelimitededitionpiecefeaturingEarlCampbell,availableasafineartlithographorasahand-paintedcel,ishand-signedbyEarlandaccompaniedbyaCertificateofAuthenticity. “WearehonoredtopartnerwiththeProPlayerFoundationandtheCampbellfamilytohelpcreateaworldfreeofMS,”saidMarkNeagli,RegionalExecutiveVicePresidentwiththeNationalMSSociety.“EarlandTylerhavedemonstratedunwavering support to the cause. It’s a privilege to work with them for this one-of-a-kind fundraising opportunity.” Detailsareavailableatproplayerfoundation.org.A portion of proceeds will support the National MS Society.
ProlificRunningBackEarl Campbell Scores with Society TeamworkFather&SonGridironGreatsJointheMSMovement
MovinG ToWARd A WoRLd FREE oF MS 19
Editor’s note: The National MS Society’s Champ Camp washeldMarch18-20atCampforAllinBurton,Texas.ChampCampoffersafun-filledweekendgetawayat this accessible location where everyone can enjoy allactivities,regardlessofability.BatonRouge,La.sophomoreBriannaPochesharesherexperienceatlastyear’s camp.
What is Champ Camp? I asked myself this questionasmymomtoldmethatourfamily
was invited to go to it in March 2010. I had never been tosuchanevent,butIlovegoingtonewplacesandmeetingnewpeople.Also,itwouldbeinterestingtomeet other young people with the same condition as me,multiplesclerosis. Iwasdiagnosedat13.Whilemultiplesclerosisitselfisararecondition,itisevenrarertobediagnosedinyourteenyears;itnormallyaffectsthoseintheir20s and older. It came as a great shock to me and my family,butIhavemaintainedapositiveattitudeandoptimistic outlook. ItakeAvonexeveryFridayandhavehadonlyoneepisodeofdemyelination–myinitialone–whichishow I got diagnosed.
Champ Camp pleasantly surprised me. I met many otherchildrenwithMS,manyofwhomhaditmoreseverely than me. It really put things into perspective. Ifeltliketheactivitieswereenjoyable,butImostly felt that they gave us the opportunity to really bond with other people and camp volunteers. They gave everyone the chance to participate in the fun events and games. I thoroughly enjoyed roasting marshmallowsanddancingaroundthecampfire.Also,thefactthattherewasan“endless”chocolatemilkmachine basically made my whole weekend. There were also opportunities for patients to talk in small groups and one-on-one. Siblings were encouraged to share stories of living with someone whohasMS.Igottohearsomanystoriesofattacks,medicationsandMRIs,andithelpedmetorealizehow lucky I am. ChampCampchangedmylifeandIwilldefinitelybe attending in years to come. I think the future for thosewithmultiplesclerosisisabrightone,becauseIfeellikethemedicalfieldissoclosetofindingacure.Imayevenaidinfindingthecureoneday,asI’dliketoenterthemedicalresearchfield.
Champ Camp is Life-Changing Event for TeenbyBriannaPoche
MSConnection • SPRinG 201120
The115-year-oldFortWorthStockShowandRodeoisoftenspokenofaslegendary.This
sentimentalsoextendstotheeventthatkicksoffthestockshow,theChisholmChallengeCompetitionforSpecialRiders. HeldthispastJanuary,theChisholmChallengeisathree-day horse show for riders with disabilities. For thepasteightyears,itwasbeenheldastheopeningeventfortheFortWorthStockShowandRodeo.Competitors in the Chisholm Challenge compete in eventspatternedaftertheAmericanQuarterHorseAssociationevents,includingWalk,TrotandCanterHuntSeatEquitation;WesternEquitation;TrailHorseClassandShowmanship.Participantscompeteinthesamevenueasotherstockshowandrodeoequestrianevents,andearnthesameribbonsandfirst-placebeltbucklesasallotherequestriancompetitors. NineTherapeuticHorsebackRidingCenterswereinvitedtoparticipateintheshow,including
WingsofHopeEquitherapy.WingsofHopeprovideshorseback riding programs for children and adults livingwithdisabilities,includingtheNationalMSSociety’s therapeutic horseback riding program in theFortWortharea.WingsofHopeisamemberoftheNorthAmericanRidingfortheHandicappedAssociation(NARHA);thisensuresthatallridershavecertifiedinstructorsandtrainedhorses,andrecognizeandrespectallsafetyrequirements. Thebenefitsoftherapeutichorsebackridingforthosewithdisabilities,includingMS,arewellestablished. These include enhancing overall functionalactivity;improvingbalance,coordination,spatialorientationandcognitivefunction;andempowering riders’ spirits. AllisonGriggs,instructorfortheSociety’stherapeutichorsebackridingprogram,said,“Formanyofourriders,theChisholmChallengeistheonlycompetitionthattheyarephysically,emotionallyor
HorsebackTherapyRidersSaddleUpforRodeoChallengebyErinFogartyandAllisonGriggs
MovinG ToWARd A WoRLd FREE oF MS 21
financiallyabletocompetein.Ouryoungerkidsdon’tnecessarily get to go out and play on a soccer team. This competition not only gives the rider a chance tocompete,buttohavefriendsandfamilycomeoutand be cheerleaders for their riders. It gives our adults somethingtostrivefor,somethingtolookforwardto,and something to hold themselves accountable for the skills that they and their horses are working on week to weekinthebarn.” KnowingthevalueoftheChisholmChallenge,Allison suggested the idea of competing to Marlys Picinich,atwo-yearveteranriderintheSociety’stherapeutic horseback riding class. MarlyshaslivedwithMSformorethan30years.Beforeherdiagnosis,Marlyshadanexcitingcareerabout which she was passionate. She was also active in many outdoor sports. She continued her career and recreation pursuits whilelivingwithMS,but,overtheyears,shegraduallylost the ability to participate in these activities. She reached a point when she felt she could no longer work orplay,anditwas“adevastatingloss.” Marlys joined the National MS Society and took particular interest in the Society’s wellness programs becauseofheractivepast.Shefirstjoinedtheassisted
physicaltrainingprogramintheFortWorthofficeand,later,thetherapeutichorsebackridingprogram.Atthatpoint,shesaid,herlifechanged. “NowIhavenewpassionsandnewgoals:wellnessandhorsebackriding,”Marlyssaid. RidingatWingsofHopehasbeenafulfillingexperienceforMarlys.Shebelievesthatworkingwiththehorseeachweekhasbeenbeneficialinincreasingher core muscle strength as well as strengthening her legs. Marlyssaid,“IfIamhavingtroublewalking,that’sOK,becausemyhorsewalksforme.Youbuildaspecialbondwiththehorsesyouride.” AlisonrecognizedtheharmonyandbalancedisplayedbyMarlysandDoodles,oneofthehorsesatWingsofHope,andencouragedMarlystocompeteintheChisholmChallenge.Marlyswasexcitedaboutthisnew goal and accepted the challenge. “Thepreparationwassometimesconfusingandfrustrating.WithMS,itishardtofocusandrememberdetailsduetocognitiveissues,”Marlyssaid,“butIwasdetermined to get it right because the horse was also in training,learningandpreparingthecorrectpatternfortheshow.” Marlys competed in two events -- Western
MSConnection • SPRinG 201122
EquitationandTrail--thispastJanuary. DuringWesternEquitation,thejudgeinthearenaasksridersintheclass,orgroupofthreetoeightriders,to perform certain tasks. As they ride along the wall inthearena,theyareaskedtomakecircles,reversedirections,haltandwalkon.Thejudgecollectivelywatchesalloftheriders,critiquingbodyposition,posture,reiningandoverallcommunicationbetweenrider and horse. Competitors then ride into the center of the arena and are given their awards. Marlys also competed in Trail at the Chisholm Challenge.Thisisamemorizedpatternthatallowstherider to focus on several different skills. These skills can includebackingup,askingyourhorsetostepsidewaystoopenorcloseagate,andpushingtostandasthehorsewalksoverobstacles.Duringatrailclass,therider and horse are the only participants in the arena. “TrailisextremelybeneficialforriderswithMSbecause it holds them accountable for all of the skills theyhavelearnedduringtheirweeklyclasses,”saidAllison.“Itischallengingphysicallybecauseridershavetousetheircoremuscles,legs,arms,handsandreins,allatthesametime.Mentally,itisgreatbecausetheyhavetoreallythinkabouteachtaskstepbystep,aswellasmemorizetheentirepattern.” Marlys recalled that riding in the show was an amazingexperience.EvenwhilelivingwithMS,she
saiditwassomethingshecoulddoand“dowell.” Marlys actively improves her well-being through her participation in the Society’s wellness classes and opportunitiesliketheChisholmChallenge,allwhileliving with MS and with an infectious attitude. TheChisholmChallenge,shesaid,was“notaboutwinning,butaboutfinishing.”Marlysrecoveredasense of accomplishment that she felt was lost long ago andthat,shesaid,istrulylegendary.
ErinFogartyistheProgramsandServicesManagerintheSociety’sFortWorthoffice;shecanbereachedaterin.fogarty@nmss.org.
AllisonGriggsteachestherapeutichorsebackridingfor persons with MS through the Society’s wellness programsinFortWorth.DetailsontheSociety’swellness classes and programs can be found in a separate article in this issue of MSConnection or by callingtheSocietyat1-800-344-4867.
MovinG ToWARd A WoRLd FREE oF MS 23
Why We Move
Thisspring,inBikeMSandWalkMSeventsacrossTexas,thousandsofpeopleareonthemove
to raise money for MS research and services. The reasonsforparticipatingareasdiverse,ascompellingand as engaging as the participants themselves:
PersonalStoriesInspireWalkersandCyclists
C o v e r S T o r Y
MSConnection • SPRinG 201124
PositiveandActiveParticipants“Iamnewlydiagnosed.Iwanttobeapositiveandactive participant in the MS movement. I want to do allthatIcantomakethisdiseaseadiseaseofthepast.”Walk MS: San Antonio participant Debbie Starrettfrom San Antonio
“Mymotherwasdiagnosedin2009.Iridetohelppeople with MS and their families. I ride to spread awareness and educate people on this enigma of a disease.ButmostlyIrideformymother,whoremainsoneofthestrongestpeopleIhaveevermet.”Houston-to-Austin BP MS 150 participantAshley McGowan from Cypress
“ThisApril,IwillridemyeighthBPMS150atage50.IrideformymotherwhohasMSforover30years.Sheismyinspiration.”BP MS 150 participant and Team Shell cyclistAndrea Patton from Houston
“IhaveMS.Iwalkforthosewhocannot.Iamsoblessed to have the health I do have. I walk so that MS willnotgeton‘mylastnerve’.”Walk MS: Amarillo participant Jamie uphold from Amarillo
“Iwasdiagnosedin1994.Ihavebenefitedfromtheresearch that has created drug therapies that allow me tofightback.Iamabletolivelifethankstothehardwork of those before me. I want to give back. This walkisawaytodothat.”Walk MS: San Antonio participant Denise Yanusfrom converse
“Asadoctor,IhavetakencareofpatientswithMSgoingthroughsurgery.Theyhavesharedlifestories,family stories and the way this devastating disease has limitedtheirlives.Ifeelcompassionforthem,Ilovethemandmygreatestdesireistohelpthem.”BP MS 150 participant Carlos Riosfrom Humble
“MSstartedaffectingmylifewhenIwas8.Ican’timagine my life without it. It has made me look at people with disabilities as not having something thatkeepsthemfromliving,butmakestheirliving
worthwhile. Living with a family member who has MS hastaughtmepatience,humorandhumility.”Walk MS: Amarillo participant Wes Brown from Amarillo
“Mywife,Anne,wasdiagnosedaboutfiveyearsago.Ican’t cure her of the disease and I can’t control her MS symptoms,butitiswithinmypowertoraisefundstohelpfindacure.”BP MS 150 participant and ConocoPhillips team cyclist David Roland from Houston
MovinG ToWARd A WoRLd FREE oF MS 25
More Motivated than Ever“Ijoinedthewalkbecausemymomisunabletowalkthisyear.Iwantedtodothisformyamazingmom.”Walk MS: Dallas participant Meghan englandfrom Dallas
“IhaveMS.Iamdoingthisinhonorofmyfamily,thoserecentlydiagnosedandthosetobediagnosed.”BP MS 150 and Frisco-to-Fort Worth Bike MS: Sam’s Clubparticipant Preston Walker from Hudson oaks
“MypersonalmotivationwasmyfriendToni.ImetToni 20 years ago. She had already been diagnosed several years prior and it never stopped her from living agoodlife.ThispastJuly,Tonipassedaway.Lookingback,IrealizeshenevercomplainedonceabouthavingMS.Shefoughtthroughit,gotonwithlifeandwouldtackle any obstacle that got in her way. This year will bethefirsttimeIwalkinhermemory.Iamhonoredtodoit.”Walk MS: Dallas participant Debbie Digrispinofrom Irving
“I’m46andlastFebruarywasdiagnosedwithRRMS.Iamnowmoremotivatedthanever.”BP MS 150 participant Martin Lopezfrom Houston
“Iamamotherwhoworksfulltime.IalsohaveMS.Juggling motherhood and working with a chronic illness gets tough. I walk so that programs can be available for others and myself if I need them. I enjoy having my kids grow up witnessing all the good that youcandoforanorganization.IhavehadMSsincemyfirstchildwas1yearold.Idon’tknowmotherhoodwithoutit.”Walk MS: Fort Worth participant Jlynn Wilkersonfrom Keller
“MShasforcedmetoevaluatemylifeandappreciateeverythinginit.Ithashelpedmetorealizethatpeople- especially friends and family - are more important thananythingelseand,intheend,allthatreallymatters.”BP MS 150 participant Nina Newtonfrom Houston
“Mymotherwasdiagnosedin1964.ShewasneverabletorealizethegreatadvancestheSocietyhasmadetowardfindingacure.IrideforherandallthosewithMS.”BP MS 150 participant and Team Chevron cyclist Robert Walker from Humble
MSConnection • SPRinG 201126
A Way to Say Thanks“IhaveMS,diagnosedinthesummerof2002.Iwalkevery year and fundraise to help aid in research and all aspects of helping all of us living with the disease. I like tokeepmoving.Ihavethistheoryof‘Moveitorloseit.’Idon’twanttolosemyabilitytomove,soIkeepgoing.”Walk MS: Fort Worth participant Gayla Bolinfrom Sanger
“WhenIwasinthethirdgrade,myteacher,Ms.Hendersen,wasaveryheadstrongpersonwhowasnot letting this disease hold her back. She inspired me,taughtmevaluablelifelessonsandbecameaclosefriend to my family. What better way to say thanks to oneofthebiggestinspirationsinmylife.”BP MS 150 participant Ryan Tucker from Houston
“IwasdiagnosedinJune2008.Ihavebeenactiveinsports all my life and even had a large portion of my college education paid for with a baseball scholarship. Icannolongerparticipateinactivitiesthatrequiretheabilitytorun.IdonotwantanyoneelsetoexperiencetheeffectsofMS.”Walk MS: Dallas participant Jason Grimmerfrom Melissa
“InMay2010,at52yearsold,IwasdiagnosedwithMS. I have been a volunteer and riding for many years.Lastcountwas23rides,countingHouston,SanAntonioandDallas.IronicthatIwouldgetthediseasethat I have spent the most time working and riding for. I ride for people like myself that live with the fear that alltheyhavelovedinfitnessandhealthmaydisappearslowlyorquickly.LivingwiththefearofnotknowingisthefaceofMSdaily.”BP MS 150 participant and eMS Bike Support memberVicki Williams from Katy
“MShasaffectedmylifeinahopefulwaythroughmyfriend’spositiveresponsetoherowndiagnosis,shown through her determination and good humor as aparticipantandsupporter.Ihaveastrong,hopefulperception for those who have MS because of my dear friend’soptimism,joyandinvitingenthusiasm.”Bike MS: Sam’s Club participant Sara Jordanfrom Huntsville
MovinG ToWARd A WoRLd FREE oF MS 27
Inspiring Others
“I’vebeenrunning5KssinceFall2010andwasoverjoyedtofinishmyfirst5Knearthetopofmyagegroup.I’mstillworkingtowardmygoalofplacingfirst.I wanted to continue to run so I could inspire others withMS,nottobecomerunners,buttochasetheirdreamsandgoalsdespitehavingMS.”Walk MS: Dallas participant Michelle Clos from Dallas
“Mymotherwasdiagnosedeightyearsago.Iamrepaying her for all the years she has helped me and alwaysbeenthere.”Walk MS: Fort Worth participant Kimber Huseman from Saginaw
“MydadwasdiagnosedinNovember2010.Irefuseto let this disease get the best of my dad or our family. Untilthere’sacure,I’llkeepresearching,talkingtoothersforsupportandstaystrong.”Walk MS: Fort Worth participant Melissa Davisfrom Granbury
“IwalkformysonBrycewhowasdiagnosedAug.13,2008attheageof13.Ibelievetheonlywaytobattlethisdiseaseiswithmoneyforresearch.”Walk MS: Fort Worth participant Tracy Penleyfrom Azle
“I’mdoingthewalkbecauseIcanstillwalkandmanyotherscan’t.Thatkeepsmemotivatedtocontinue.”Walk MS: San Antonio participant Ben Cooperfrom San Antonio
“Iwanteveryonetoseesomeonethatwasknockeddown in the dirt. I could not move and was in a wheelchair,goingthrougheverysymptomimaginable,and now I am walking and getting my life back. If you lookatmetodaycomparedtothreeyearsago,youwould have never believed where I am at today. You look at me and you would almost never know or guess thatIhaveMS.”Walk MS: Amarillo participant Heath Hendersonfrom Heath
MSConnection • SPRinG 201128
“Mymotivationisbeingabletodancewithmysonsattheir weddings. I want to be able to walk and be active for them as long as I can. The more money that is spent onresearch,themorelikelymygoalwillbeattained.”Walk MS: Dallas participant Kelli Hofeldtfrom McKinney
“It’sreallyaboutmymom.Shewasdiagnosedwhenshe was younger than I am now. I know that if she didn’thaveMS,shewouldprobablyhavedonetheBPMS150herself.Iwanttohonorthementalstrengthmymomhasshown.”BP MS 150 participant and Team KPMGcyclist Donna Settle from Katy
“Ayearagoatthistime,Iweighed360andwashavingdifficultclimbingthestairstoputmykidstobed.I’venowlost140poundsandweigh220.I’minthebestshape of my life. One way I’m keeping the weight off is by riding. It’s a great way to do something for the communityaswellasmyself.”BP MS 150 participant and Team Shell cyclist Kevin Anselmo from Kingwood
“MShasreallyshownmeawholenewwaytoviewlife.Iusedtoworryabouthowto‘beattheJones.’ButwhenIwastold‘youhavemultiplesclerosis,’myeyesopeneduptothetrueimportanceinlife,mythreeFs:faith,familyandfriends.”Walk MS: Amarillo participant Barbara Hatchelfrom Amarillo
“Sincethediagnosis,I’velearnednottotakeanydayforgranted,andtoliveandlovetothebestofmyabilityeachandeveryday.”Walk MS: Dallas participant Stephanie Dixonfrom ennis
“WhenIwasdiagnosed,itmademestronger.IthasmademefightandI’mnotgivingup.”Walk MS: Dallas participant Kimberly Kirbyfrom denton
“Whatinspiresmetowalk?MaybeonedayIwon’thavetotakeashoteveryotherdaybecause,bymewalkingandraisingfunds,Iwillhelpfindacure.”Walk MS: Amarillo participant Stephanie Koehnfrom Dalhart
TolearnmoreaboutBikeMSeventsaroundTexas–which also include the Bike MS: Cactus and Crude ride inMidland,theBikeMS:WildWestrideinAmarilloandSanAntonio’sBikeMS:AlamoRidetotheRiver–andacrosstheUnitedStates,visitbikeMS.org.
TofindaspringorfallWalkMSnearyou,checkoutwalkMStexas.org.
MotivationtoDance
MovinG ToWARd A WoRLd FREE oF MS 29
MSConnection • SPRinG 201130
OneeveninginFebruary2006,thewholerightsideofmybodyfellasleep.
The numbness on the right side made walking a challenge since I had no idea where my right foot was going and my balance was way off. I was admittedtothehospitalandwasdiagnosedwithMSafteranMRIpickedup two small white matter lesions. WhenIgotbetterandstarteddoingresearchonhowtominimizethesymptomsofMS,Ireadarticlesonthebenefitsofyoga.Istartedtakinga class at my gym and I felt it made a positive difference in my body and balance. Fast forward two years later: I applied for the MS Entrepreneur programtobringagentleexerciseprogramtotheMScommunity.Luckily,IwasagrantrecipientandOliveFitwasborn. OliveFitprovidesDVDsofgentleexercisethatcanbedoneinachairoronanexercisematinthecomfortofyourownhome.IthoughtDVDswouldbegoodmediumforpeoplewithMS;becausefatigueandheatsensitivityarecommonsymptoms,anyonewithMScandotheDVDroutines when you have more energy and can set the thermostat at a good temperature. Ihopeyoufindtheroutinesasfun,motivatingandbeneficialasIhave,andstarthavinglessmusclespasticity,reducedstress,moreenergy,betterbalanceand,overall,generallyfeelingprettygood.
ClaireLindsayisanMSEntrepreneurinTheWoodlands.Visitolivefit.orgformoreinformationonOliveFit,toorderDVDsandtosignupforthefree OliveFit newsletter.
EntrepreneurialSpirit Fast Forwards ExerciseDVDsby Claire Lindsay
Editor’s note: The following is made possible through the Society’s local MSEntrepreneursprogram,providedthroughthevisionandsupportofKanalyTrust.IfyouhaveanideathatwillhelppeoplelivingwithMS,youcanapplyyear-roundforanMSEntrepreneursgrant.Detailsandapplications are available online at MSentrepreneurs.org.
MovinG ToWARd A WoRLd FREE oF MS 31
Roaring good times were in store across the Lone Star State at the biggest get-togethers of the year
for persons living with MS. HundredsofindividualswithMSandtheirfamilies attended the Society’s recent MS Socials inSanAntonio,Dallas-FortWorth,HoustonandAustin. Society staffers and volunteers teamed up to coordinateandhosttheseannualevents,whichhave
become the social highlights of the year for many. Guestsenjoyedplentyoftastydishes,movin’andgroovin’entertainment,creativeactivitiesforthekidsandabountyofprizedrawingsforluckywinners. Eachsocialhadaspecialtheme,suchasthefancifulmagicandfantasymotiffortheHoustongalaandtheroaring’20sflavoroftheAustinevent.
TexansLoveaGoodParty!
MSConnection • SPRinG 201132
TheHoustonian’sJimMillshastofindroomforanew award.
Mills,thegeneralmanagerattherenownedTheHoustonianHotel,washonoredas2011PersonontheMovebythe National MS Society. The award–presentedduringtheHoustonOntheMoveLuncheoninMarch–recognizesanindividual’soutstanding commitment to the Society’s mission to help everyone affected by multiple sclerosis. MillsjoinedTheHoustonianasexecutivechefin1995,advancingtohotel manager in 2002 and general managerin2005.Heleadsateamof240stafferswhoprovideforallaspects of the guest and employment experience. AsamemberofTheHoustonianHammerheadscyclingteam,MillshasriddenintheSociety’sannual180-mileHouston-to-AustinBPMS150fundraisingrideforseveralyears.Hehasbeenatopfundraiserformorethansixyears,raisingcrucialfunds to advance breakthrough MS research and
programs. In addition to his commitment to the Society’s mission,Millsisactiveincommunityservicewitha
focus on the areas of hunger and foodinsecurity.Hewasalong-timeboard member and past board chairmanofEndHungerNetwork;itmergedwithHoustonFoodBankin 2008 and Mills now serves on itsboard.Hehasvolunteeredformany years with Share Our Strength (SOS)andserved10yearsonthelocal committee of its Taste of the Nationevent,heldannuallyatTheHoustonian. MillsisImmediatePastChairmanoftheHotelandLodgingAssociationofGreaterHoustonandisaboardmemberoftheTexasHotelandLodgingAssociation.He
alsoservesasboardchairmanoftheGreaterHoustonConvention and Visitor’s Bureau. TheUniversityofTexasatAustingraduateandhiswife,Robbin,havebeenmarriedformorethan25years,andhavetwosons,Bob,21,andJohn,17.
HoustonianJimMillsNamed2011PersonontheMove
MS eye CARe Honored as Company on the MoveInMarch,theSocietyrecognizedMSEyeCAREasits2011 Company on the Move. AttheUniversityofHouston-basedMultipleSclerosisEyeCenterforAnalysis,ResearchandEducation–orMSEyeCARE,forshort–cliniciansandresearchers use state-of-the-art visual technology to lookforabnormalitiesinopticnervefibersthatwouldindicateahighindexofsuspicionforanMSdiagnosis.ManyMSpatientsexperiencetheirfirstattacksintheopticnerve,causingspottyorblurryvision,aswellastemporary or permanent loss of sight.
Thecenter,whichopenedin2005,isco-directedbyneuro-ophthalmologistsRosaTang,M.D.,MPH,MBA,FAAO,aboard-certifiedophthalmologist,andJadeSchiffman,M.D.,FAAN,FAAO,aboard-certifiedneurologist and ophthalmologist and full-time professoratM.D.AndersonCancerCenter. MSEyeCAREisajointeffortbetweentheUniversityofHoustonCollegeofOptometryandtheNational MS Society. Information can be found on theUniversityofHoustonCollegeofOptometrysiteatwww.opt.uh.edu(type“MSEyeCARE”inthesearchbox).
MovinG ToWARd A WoRLd FREE oF MS 33
GetMovingwith WellnessClasses Near You Wellnessisadynamicstateofphysical,emotional,spiritual and social well-being that can be achieved even in the presence of a chronic illness or disability. Studiesshowthatmoderateaerobicexerciseimprovescardiachealth,staminaandmood,andhelpsmanagesymptomslikefatigue,weakness,andbladderandboweldifficulties.Stretchingexercises–whetherdoneonyourownorwithahelper–canrelievestiffnessandimproveyourflexibilityandmobility. The National MS Society provides programs to
promotewellnessofmind,bodyandspirit.Listedclasses are free unless otherwise noted. Always talk to yourdoctorbeforestartinganewexerciseprogram. Note: The following information is current as this issue went to print. To ensure class details have not changed,usetheclasscontactslistedbelow.Viewfullclass details and current class listings online by visiting JointheMovementLoneStar.org,clicking“ProgramsandServices”intheleft-handnavigation,then“WellnessandExercise.”
MSConnection • SPRinG 201134
ABiLEnEAbilene YMCA3250StateSt.Abilene,TX79603
Mon/Wed5:30-6:30p.m.Thursday6:30-7:30p.m.
325-677-8144
ARLinGTonArlington YMCA7120S.CooperSt.Arlington,TX76001
Tues/Thurs 11:15a.m.-12:15p.m.
817-419-9629Toreserveaspotinclass,callErinFogartyat800-686-7415.
DALLAS - Aquatics for People with MSPearceHighSchoolNoratorium1600N.CoitRoadRichardson,TX75080
Mon/Wed/Fri9:30-10:30a.m.
ContactTheRichardsonSeniorCenterat972-744-7800.
DALLAS - Multiple Sclerosis Aquatic exercise ProgramTexasHealthPresbyterianHospitalDallasFinleyEwingCardiovascularand Fitness Center5721PhoenixDriveDallas,TX75231
Mon/Wed/Fri11-11:45a.m.
Toreserveaspot,callMariannaClementat214-345-4512.
kELLER KellerISDNatatorium1000BearCreekParkwayKeller,TX76248
Mon/Wed/Fri11 a.m. - noon
817-744-1350Toreserveyourspot,callErinFogartyat800-686-7415.
MidLAndCOMAquatics3003NorthASt.Midland,TX79705
Tues/Thurs12:15-1p.m.
Costis$10permonth.ContactGailat806-468-8005x22.
NeW BRAuNFeLS - Wet ‘n’ WellYMCA710LandaSt.NewBraunfels,TX78130
Wednesday11:30a.m.-12:30p.m.
ContactRanaRussellat830-643-0376.
WAcoWaco Family YMCA6800HarveySt.Waco,TX76710
Tues/Thurs9-10a.m.,6:30-7:30p.m.
Contact Chris Bernard atchris.bernard@ymcaofcentraltexas.orgorcall254-776-6612toreserveaspot.
WicHiTA FALLSNorthTexasRehabCenter1005MidwesternParkwayWichitaFalls,TX76302
Tues/Thurs2-3p.m. 940-332-0771
AquaticsWateraerobicsclassesaredesignedwithspecialattentiontostretching,toningandstrengthening,includingbalanceexercises,eitheronlandorinwater.Classesareperformedinwaist-deepwater,utilizingslow,deepbreathingandawiderangeofmovementstogiveafeelingofcontrol,balanceandcoordination.Aquaticsclassescanhelpdecreasespasticity,increaserangeofmotionandimprove gait. If not independent on land, you must provide a support person to assist you into the pool.
MovinG ToWARd A WoRLd FREE oF MS 35
HouSToN - Healing ArtArtLeagueHouston1953MontroseBlvd.Houston,TX77006
Friday10a.m.-12:30p.m. 713-523-9530
HouSToN - Physically Challenged Healing Art ArtLeagueHouston1953MontroseBlvd.Houston,TX77006
Wednesday1-4p.m. 713-523-9530
Art TherapyDiscoverthehealingpowerofartintheseaward-winningoutreachprograms.Studentsexplorevarioustechniquesindifferentmedia.ThesesoothingclassesareopentoallpersonswithMS.PartialfundingforthisprogramisprovidedbytheNationalMSSocietyandtheArtColony Association.
RouND RoCK - Fitness PilatesMSClinicofCentralTexas16040ParkValleyDrive,B-100RoundRock,TX78681
Tue/Thurs5:30-6:30p.m.
CallMaryHolderat512-569-5955.(Clinicphoneis512-248-8663.)
DALLAS - Fitness Pilates for Multiple SclerosisMovie StudioPrestonCampbellCenter17062PrestonRoad,Ste108Dallas,TX75248
Saturday1 - 2 p.m.
Contact Maureen Tarantino at motarantino@grandecom.net or 214-924-0914.
PilatesPilatesisagentle,yeteffective,formofexerciseforallfitnesslevelsandabilities.Exercisesarenon-impactandnon-weightbearing,andstrengthencoremuscles,improvingoverallbodystability.
CARRoLLToN - Seated AerobicsSandungaDanceStudio2155MarshLaneCarrollton,TX75006
First Thursday12:30-1:30p.m.
CallEricaSuttonat1-800-686-7415.
Sit’n’FitSit‘n’Fitisaseated,creativemovementprogramthatfocusesonlightaerobics.Exercisesaredonefromaseatedposition,eitherinachairorwheelchair.Focusisplacedonindividualabilities,allowingparticipantstoworkattheirownlevels,abilitiesandpace.
MSConnection • SPRinG 201136
DALLAS - Seated Pi-YoMovie StudioPrestonCampbellCenter17062PrestonRoad,Ste.108Dallas,TX75248
Tuesday1 - 2 p.m.
Contact Maureen Tarantino at motarantino@grandecom.netor214-924-0914.
Pi-YoThisclassisacombinationofPilatesandyogaforexerciserswithmobilitylimitations.Itisalsosuitablefor those who prefer sitting or using a wheelchair.
TeXARKANA - Silver Sneakers ISt.MichaelHealth&FitnessCenter2223GalleriaOaksDriveTexarkana,TX75503
Tue/Thurs2-2:45p.m.
RSVP:CalltheHealth&FitnessCenterat903-614-4441toreserveyourspot.
TeXARKANA - Silver Sneakers IISt.MichaelHealth&FitnessCenter2223GalleriaOaksDriveTexarkana,TX75503
Mon/Wed2-2:45p.m.
RSVP:CalltheHealth&FitnessCenterat903-614-4441toreserveyourspot.
Silver SneakersSilverSneakersusesavarietyofexercisesdesignedtoincreasemuscularstrength,rangeofmotionandactivity for daily living skills. This class is appropriate for individuals who may use a wheelchair full-time.
FoRT WoRTH - Assisted Physical TrainingNational MS Society4086SandshellDriveFortWorth,TX76137
Tue/Thurs - Times vary Privateevaluationnecessaryfor registration. Schedule an appointment by calling Travis Ehrhardtat214-315-6127.
DALLAS - Assisted Physical TrainingNational MS Society2105LunaRoad,Suite390Carrollton,TX75006
Wed - Times vary Privateevaluationnecessaryforregistration. Call Travis Ehrhardt at 214-315-6127.
Physical TrainingEachphysicaltrainingsessionincludesstretchingexercises,lightweightresistancetrainingandbreathingtechniquesunderthedirectionofacertifiedpersonaltrainer.
MovinG ToWARd A WoRLd FREE oF MS 37
CLeBuRNe - Dallas/Fort Worth AreaWingsofHopeEquitherapy4200CR806Cleburne,TX76031
Thursday12:15–1p.m.or1–1:45p.m.
Toreserveyourspot,contactJulieRivardatWingsofHopeat817-790-8810.
CoRINTH - Dallas/Fort Worth AreaSpiritHorseTheraputicCenter1960PostOakDriveCorinth,TX76210
Monday9-11a.m.
ContactSpiritHorseTherapeuticCenterat940-497-2946.
Therapeutic Horseback RidingTherapeutic horseback riding has been shown to enhance overall functional activity for people withdisabilities.ThisprogramisbeneficialforpeoplewithMSwhohavelimitedmobility,thoseworkingtoimprovebalanceandmusclecoordination,andpersonswhohaveenoughtrunkcontroltosupportoneselfsittingindependently,butwhowouldliketoincreasecoremusclestrength.ReadaprofileofMarlysPicinich,aparticipantinthetherapeutichorsebackridingprogram,inthisissueofMSConnection.
AuSTIN - Chair Yoga ClassDittmarRecreationCenter1009W.DittmarRoadAustin,TX78745
Mon/Wed1 - 2 p.m.
512-712-4451
AUSTinSt.David’satHancockCenter1000E.41stSt.,BldgOSuite925-TherapyGymAustin,TX78751
FridayNoon - 1 p.m.
Toreserveyourspot,contactRikkiDunnat512-261-0125orrikidunn@webtv.net.Cost:$25permonth.
BRoWnSviLLESouthTexasRehabilitationHospital425EastAltonGloorBlvd.Brownsville,TX78256
Tuesday5:30-6:30p.m.
CallLupitaFulghumat956-554-6000.
coRPUS cHRiSTiYWCA of Corpus Christi4601Corona,Ste.2303CorpusChristi,TX78411
Thursday2 p.m.
CallMaryCarpenterat361-813-1763.
GARLAND - Adaptive Yoga for People with DisabilitiesYoga Synergy Spa(insideFirewheelTownCenter)125CedarSageDriveGarland,TX75040
Thursday - 11 a.m. (March3-April7)
CallAmberKocianat972-904-2222.Costforthissix-weekseriesis$65.Pre-registrationrequiredatYogaSynergySpa.com.
YogaProveneffectiveforpersonswithMS,yogacanimprovebalance,rangeofmotion,flexibilityandmore.Foryogaclasses,eachparticipantmustbringayogamat,towelorblanket.
MSConnection • SPRinG 201138
HouSToN - Adaptive Yoga for MSNational MS Society8111N.StadiumDrive,Ste.100Houston,TX77054
Thursday6:30-8p.m.
CallLissaGiaccoat713-394-2928.
HoUSTon - Seated YogaNational MS Society8111N.StadiumDrive,Ste.100Houston,TX77054
3rdTuesday10 - 11 a.m.
CallLissaGiaccoat713-394-2928.
McALLEnFirstUnitedMethodistChurchKeystoneRoom4200NorthMcCollMcAllen,TX78504
Tuesday6:30-7:30p.m.
CallAnnetteDeLeonat956-534-1191.
PeARLAND - Adaptive Yoga for MSWestside Events Center2150CountryPlacePkwy.Pearland,TX77581
Saturday10 a.m. - noon
CallLissaGiaccoat713-394-2928.
RouND RoCK - Yoga for Individuals with MS or Mobility ChallengesGraceLutheranChurch708BluffDriveRoundRock,TX78681
Friday10 a.m.
CallRocioMoralesat512-255-8109.Costis$40permonth.
RouND RoCK - Gentle YogaMSClinicofCentralTexas16040ParkValleyDrive,B-100RoundRock,TX78681
Wednesday10:45a.m.
CallMaryHolderat512-569-5955or ctnc_pilates@yahoo.com.
SAN ANToNIo / LIVe oAK - MS Yoga JourneyNortheastMethodistHospitalCHCRoom12412JudsonRoadSanAntonio,TX78233
Monday7p.m.
Contact Jan Mayulianos at 210-659-8803.Newstudentsmustcall ahead to verify class dates and location.
SAN ANToNIo - Adaptive Yoga for MSMSCenterofSouthTexas-NISA3603PaesanosPkwy.,Ste.300SanAntonio,TX78231
Monday6p.m.
Toreserveyourspotintheclass,contactJanetKaufmanat210-692-1245.
SAN ANToNIo - Gentle Yoga
St.Mark’sUnitedMethodistChurchOfficeEntrance1902VanceJacksonSanAntonio,TX78213
Wednesday1-2:30p.m.
CallLissaGiaccoat713-394-2928.
SouTHLAKe - Divine YogaDivineCenterofYoga3280W.SouthlakeBlvd.Southlake,TX76092
Tue/Thurs/Sat12:15-1:15p.m.
Call817-431-9642.Arrive15minutesearlyforyourfirstclass.
MovinG ToWARd A WoRLd FREE oF MS 39
GET on A
ROLL
Registration is open for 2011 Walk MS events throughout the Lone Star State. Visit walkMStexas.org to sign up for a walk near you.
Saddle up for a Bike MS trek throughTexas. Find out how to participate, volunteer or
donate by visiting bikeMStexas.org.
Go FoR A
walkMStexas.org
bikeMStexas.org
STROLLor
STePHeNVILLe - Adaptive Yoga for MSCountryside Wellness Center515W.LinglevilleRoadStephenville,TX76401
2nd Tuesday6-7p.m.
ContactJaniePorteleatyoga@our-town.comor254-968-8917.
TeXARKANA - Beginners YogaChristus St. MichaelHealth&FitnessCenter2223GalleriaOaksDriveTexarkana,TX75503
Tuesday9:30-10:25a.m.Thursday9:30-10:25a.m.
RSVP:ContacttheHealth&FitnessCenterat903-614-4441toreserveyour spot.
TEXARkAnA - Hatha YogaChristus St. Michael Health&FitnessCenter2223GalleriaOaksDriveTexarkana,TX75503
Monday8:45-9:40a.m.Tuesday5:30-6:25p.m.Wednesday8:30-9:25a.m.Thursday5:30-6:25p.m.
ContacttheHealth&FitnessCenterat903-614-4441toreserveyourspot.
THE WoodLAndSYMCA - South Montgomery County 6145ShadowbendPlaceTheWoodlands,Texas77381
Monday1 - 2 p.m.
CallLissaGiaccoat713-394-2928.
r e S e a r C H
Learn about topics that affect your life from the comfort of your home with the National MS Society’s monthly teleconferenceseries.Eachteleconferenceisfreeandbeginsat7p.m.CentralonthesecondWednesday
ofeachmonth.Toregisterforateleconference,call1-800-344-4867(press1whenasked).UpcomingteleconferencesforApril–July2011are:
Call,ListenandLiveBetterwithSociety’s Monthly Teleconferences
Mood, Cognition and MemoryApril13,2011InApril’steleconference,gethelpful,practicaltipsonhowtobettercopewithmood,cognition and memory symptoms. You’ll also learn more about treatment options that could help you.
MS 101May11,2011InMay’ssession,theSocietywillprovideacomprehensive MS overview for people who are newly diagnosed. This teleconference is helpfulforanyonewhoisnewlydiagnosed,their friends and family members.
Managing TransitionsJune8,2011MS can throw daily challenges your way in the formofnewsymptoms,employmentissues,altering family dynamics and more. In June’s teleconference,you’lllearntoadjust,copeandadapttochange;discussemotionalresponseslikegriefandloss;anddiscoverresourcestohelp you through these various transitions.
Research and What It Means for YouJuly13,2011ComingupinJuly,we’relookingaheadtothefuture.CallintolearnaboutexcitingnewMSresearch and what it could mean for you and your loved ones.
MovinG ToWARd A WoRLd FREE oF MS 41
SocietyRecapsHigh-ImpactResearchProgress
Excitingprogresswasmadein2010ineveryfieldofMSresearch,includingnewtherapies,waysto
restorefunction,improvedqualityoflifeandbetterunderstandingofMS-influencingfactors. The National MS Society continues to propel research forward with a comprehensive research strategyandprogram.In2010,theSocietyprovided$36milliontosupport325newandongoingprojects.Inaddition,thankstotheeffortsofMSactivists,$4.5million was set aside for funding MS research out of the2010DepartmentofDefensebudget. Hereisasampleofimportant,potentiallyhigh-impact research results that occurred in 2010.
Progress toward Finding Better Therapies for MS
* Gilenya(NovartisInternationalAG)capsuleswereapprovedbytheFoodandDrugAdministration(FDA)forreducingthefrequencyof clinical relapses and delaying the accumulation ofphysicaldisabilityinrelapsingformsofMS,makingitthefirstoraldisease-modifyingtherapyfor the treatment of multiple sclerosis. Cleveland Clinic doctors voted this among the top 10 medical breakthroughs of the year.
* PositiveresultsfromthephaseIIItrialoforalcladribine(EMDSerono)showedthatitreducedrelapseratescomparedtoplacebobyupto57.6percentinastudyinvolving1,326peoplewithrelapsing-remitting MS. Additional studies are
underway and the company has applied to the FDAformarketingapproval.
* Teriflunomideisanoveloralcompoundthatinhibitsthefunctionofspecificimmunecells.Resultsfromatwo-year,phaseIIItrialinpeoplewithrelapsingMS,comparingtwodosesagainstplacebo,showedthatbothdosessignificantlyreducedtherateofMSrelapsesbyupto31.5percentrelativetoplacebo;thehigherdosewasfound to reduce the risk of disability progression by29.8percentcomparedtoplacebo.MRIscanning showed reduced risk of new MS lesions and reduced disease activity.
* InastudysupportedbytheSociety,theDepartmentofVeteransAffairsandothers,researchersattheOregonHealthandScienceUniversityinPortlandinvestigatedlipoicacid,anantioxidantthatpreviousstudiessuggestcanbenefitmicewithMS-likedisease,inpartbyinhibiting immune cells from entering the brain. In alabmodelofacuteopticneuritis,theyfoundthatlipoic acid could reduce damage to myelin and to nervefibers,andalsoreducedinflammation.Thisgroup is planning more research to determine whetherlipoicacidmayprovidebenefitsforpeople with MS.
* Morethan$2.4millionwascommittedbytheNational MS Society and the MS Society of Canada to support seven grants on chronic
r e S e a r C H
From National MS Society reports
MSConnection • SPRinG 201142
cerebrospinalvenousinsufficiency(CCSVI)todetermine its role in the MS disease process. The applicationsunderwentarigorousexpeditedreview process by an international panel of experts.Thestudies,launchedJuly1,weredeemed necessary because it is not known yet whether,orifsohow,CCSVIcontributestoMSdisease activity.
* PublishedresultsofthephaseIICHOICEstudy–inwhich230peoplewithrelapsingMStakinginterferon beta and having disease activity were administeredoneoftwodosesofdaclizumab(BiogenIdecandAbbott)orplacebo–showedthat the higher dose reduced disease activity onMRIscansby72percentandthelowerdoseby25percent.PhaseIIIstudiesofthisimmunemodulator are underway.
* At least two small clinical trials are currently underway–oneattheUniversityofWisconsinsupportedwithSocietyfunding–testingtheidea that infection with intestinal parasites may reduce immune attacks in MS. This relates to the “hygienehypothesis,”theideathatMSmaybeless common in underdeveloped regions because earlyexposuretocommoninfectionsstimulatesimmune responses that help offset the attack on the brain and spinal cord in MS.
* Inastudyofmorethan5,000peoplewithMS,researchersidentifiedcharacteristicsthatmayhelp predict the rate of disease progression. Motorsymptomsatonset,suchasmusclestiffness,andmalegenderwereassociatedwithafaster progression from relapsing-remitting MS to secondary-progressive MS.
* Two published studies strengthened the idea thatneuromyelitisoptica(NMO),adiseasecloselyrelatedtoMS,isanautoimmunediseasethattargetsoneormorespecificproteinsinthebrain,andprovidedarationalefornewtreatmentapproaches that could also have implications for treating MS.
* A provocative study by investigators at the UniversityofSydneysuggestedthattheearliestactivity seen in the brain in MS is the destruction ofcellsthatmakemyelin(oligodendrocytes),occurring before the onset of immune activity usually blamed for triggering the disease. This studyopensupnewpossibilitiesforfindingthe cause of the disease and developing new treatments.
* The Society’s annual listing of Clinical Trials in MS–featuringongoingMStrials,aswellasthosethat are being planned or that have been recently completed–listed129studies,includingstudiesoforaltherapiesfortreatingMSoritssymptoms;novelagents,suchasgreenteaextracts;andastudyoftheantioxidantidebenoneinpeoplewithprimary-progressive MS.
Progress toward Restoring Function
* Researchershaveidentifiedamoleculethatappears to stimulate the brain’s natural ability to repair myelin in rodents. Myelin is the insulating coatingonnervefibersthatisdamagedinMS.Thefinding,whichneedsfurtherresearchtotranslatetohumandisease,resultedfromamassive high-tech screening system to identify new strategies to repair nervous system damage in MS.
* TheFDAapprovedthemarketingofAmpyra(dalfampridine,formerlyknownasfampridineSR,fromAcordaTherapeutics)foritsabilityto improve walking in people with any type ofmultiplesclerosis.ThisisthefirsttherapyspecificallyapprovedtotreatasymptomofMS,representing a big step forward for many people whomaybenefit.
* Thefirstdrugspecificallydevelopedtotreatuncontrollablelaughingorcrying,alsocalledpseudobulbaraffect(PBA),wasapprovedbytheFDA.NuedextaisanoraltherapyshowntosignificantlyreduceepisodesinpeoplewithMS,ALS and other disorders.
MovinG ToWARd A WoRLd FREE oF MS 43
* AUniversityofCaliforniaatLosAngelesteamfunded by the Society found that depression is linkedtobrainvolumelossinspecificsub-regionsofthehippocampus,anareaofthebrainknowntobe important in memory. Tissue loss in this area also was linked with abnormal secretion patterns of the stress-related hormone cortisol. The results warrantfurtherstudy,butareanimportantclueto a symptom that can interfere greatly with the qualityoflifeofpeoplewithMS.
* The largest study of its kind showed that mindfulness-basedmeditationsignificantlyimprovedhealth-relatedqualityoflife,depressionand fatigue in a study involving people with relapsing-remitting and secondary-progressive MS. This controlled study showed the value of an alternative treatment and highlighted the importanceoffocusingonqualityoflifeissuestoimprove well-being.
* InvestigatorsattheUniversityofCaliforniaatLosAngeles,withaHealthCareDeliveryandPolicycontractfromtheSociety,exploredhowtomeasurequalityMShealthcaretoestablishbetterstandards of care for people with MS. The most highly-rated indicators were appropriateness andtimelinessofthediagnosticwork-up,bladderdysfunction,cognitiondysfunction,depression,disease-modifyingagentuse,fatigue,andspasticity.Thesewillbefurtherexploredtohelpclinicians and health care systems in evaluating the qualityoftheMScaretheyprovide.
* To evaluate sleep disorders and fatigue in people withMS,investigatorsusedpolysomnography,a diagnostic tool used in sleep medicine. They foundthat25of26peoplereportinghigherlevelsoffatigueactuallyhadsleepdisorders,suchasinsomnia,restlesslegssyndromeorsleepapnea.Twelve had two different sleep disorders. The investigators urged health care professionals treating people with MS to evaluate fatigued patientsforthepresenceofsleepdisorders,which are likely to improve with the appropriate treatments.
* Cluesfromaseriesofbasicexperimentshavepropelled a leap forward that has implications for new strategies to treat MS. An international team from Mount Sinai School of Medicine in New York,SingaporeImmunologyNetworkandotherstracedthedevelopmentaloriginsofmicroglia,whicharetheonlyimmune/inflammatorycellsresident in the brain. Microglia are suspected to play a role in either causing or even repairing lesions in MS. They were found to develop completely apart from all other immune cells and remain a separate population throughout life. This findingwillfocusattentiononmicroglia,leadingtoward new treatment strategies to inhibit injury and promote repair in the central nervous system.
Progress toward ending MS Forever
* Two studies added to evidence for a possible role forEpstein-Barrvirus(EBV)inthedevelopmentofMS.Inone,HarvardSchoolofPublicHealthinvestigators showed that an EBV-positive blood test preceded MS diagnosis in a large sample ofMScasesidentifiedthroughU.S.militarydatabases.Inanother,aninternationalteamreportedthatreactionstoaspecificproteinassociated with EBV were increased in people with MS compared with siblings who did not have MS.
* HarvardSchoolofPublicHealthresearchersshowed that two individual factors that were previouslyidentifiedasincreasingthelikelihoodofdevelopingMS–exposuretoEpstein-Barrvirusandtobaccosmoking–mayinteractandmultiplyto substantially increase the risk of developing MS in those with both risk factors. The results warrant confirmationinfurtherstudies.
* MRI-detectedMSdiseaseactivitywasincreasedtwo to three times during the months of March to August compared with other times of the year,reportedresearchersatHarvard’sBrighamandWomen’sHospitalinBoston.Theseincreases correlated with warmer temperature and increased solar radiation levels. The study
MSConnection • SPRinG 201144
highlightedtheinfluenceofenvironmentalfactorson MS and also suggested that seasonal variations should be accounted for in future clinical trials.
* Understandinghowaperson’sgenesmake him or her susceptible to developing MS willgofartowardfindingwaystoprevent multiplesclerosis.InvestigatorsattheUniversityofBoulderdescribedanewWebsite– MSgene.org–launchedbytheInternational MSGeneticsConsortiumthatsummarizesmore
than 800 MS gene association studies. The strongestassociationsappeartobeexertedbyimmune system genes. This collection can help to prioritizefuturegeneticstudies.
These and many other efforts by researchers aroundtheworldreflecttherapidpaceofMSresearchtoday.Formoreresearchupdates,visittheSociety online at nationalMSsociety.org.
r e S e a r C H
ResearchersfromtheNetworkofPediatricMSCentersofExcellenceestablishedbytheNational
MultipleSclerosisSocietyhavepublishednewfindingson MS in children and adolescents. The Society has beenfundingthesitesforthepastfiveyears,aspartofitsPromise:2010campaign. Thereisnodisease-modifyingtherapyspecificallyapprovedforchildrenwhohaveMS,sogatheringandsharingtreatmentexperienceisanimportanttaskofthecenters.E.AnnYeh,M.D.,withStateUniversityofNewYorkinBuffaloandcolleaguesatallsixcentersreviewedtherecordsof258childrenwithMSwhohad been treated with disease-modifying therapies. Ofthesechildren,144(58percent)stayedontheirfirsttherapy,65(25.2percent)wereswitchedtooneothertherapy,29(11.2percent)wereswitchedtwiceand20(7.8percent)wereswitchedthreetimes.Mostswitchedtootherfirst-linedisease-modifyingdrugssuchasinterferonsorglatirameracetate.In55children(21.3percent),however,treatmentsincludedcorticosteroids,mitoxantrone,cyclophosphamide,natalizumabordaclizumab.InvestigatorsnotedthatHispanicchildrenweresignificantlymorelikelytoexperience“breakthrough”diseaseactivitywhilereceivingfirst-line,disease-modifyingtherapies. Theauthorshighlightedtherelativelyfrequentuse of second-line therapies and noted that the long-
term safety of these is not yet known in children. They acknowledgedthestudy’slimitations;aretrospectivereview may not capture all of the relapses that occurred,orwhatsocioeconomicfactorsmightbe associated with disease activity or treatment choices. They concluded that further studies should evaluate the safety and effectiveness of MS drugs in children,aswellasthemechanisms–socioeconomic,psychologicalorbiological–thatcontributetobreakthrough disease activity. WhiletheinitialgrantstothePediatricNetworkCentersofExcellencearesoonending,thereisfundingforthenexttwoyearstosupportadatacoordinationand analysis center so the network can continue to collect data and study pediatric MS and related disorders. Duringthepastfiveyears,thenetworkhaspublished two original research papers and many reviewpapers.Additionally,therehavebeenmorethan150papers,postersandpresentationsmadebynetworksitesonpediatricMS,andnetworkmembersaretheleadauthorsofatextbookonpediatricMSthatwillbeavailablein2011fromCambridgePress.They and the Society are working to leverage this collaboration and data collection into continued careandfurtherresearchtobenefitchildrenandadolescents with MS.
PediatricCentersofExcellencePublishFindings on Children with MS
continued from page 44
MovinG ToWARd A WoRLd FREE oF MS 45
A cureforMSmeansnotjuststoppingandendingthedisease,butrepairing damage and restoring lost function.
TheNervousSystemRepairandProtectionInitiative,fundedthroughtheNationalMSSociety’sPromise:2010Campaign,waslaunchedin2005toaddresswhatwasthenanunder-exploredarea.Thisboldinitiativeinvolved the largest grants ever offered by the Society and set the stage for translating basic lab discoveries into clinical efforts to restore nerve function in people with MS. Theresultshavebeenimpressive:itjump-startedthefield,trainedscoresofpromisingyounginvestigators,producedmorethan150research papers and leveraged millions of dollars in new funding. “It’sremarkable,”saidTimothyCoetzee,Ph.D.,ChiefResearchOfficeroftheSociety.“WelaunchedthisinitiativetosetthestageforclinicaltrialsofneuroprotectioninMSand,fiveyearslater,weareseeingthesestudiescometolife.”
What repair and protection mean DuringthecourseofMS,theimmunesystemattacksthebrainandspinalcord.Nervecellshavewires,oraxons,thatallowthemtosendandreceivesignals.Axonshaveacoatingonthemcalledmyelin–likeinsulationonawire–whichspeedsnerveconduction.MyelinisamaintargetinMS,butaxonsarealsodamaged.Damagetoaxonsisprobablywhat causes progressive disability or worsening in people with MS. The focusofprotectioneffortsistostopthedestructionofmyelinandaxons;the focus of repair efforts is to restore those tissues. Drs.PeterCalabresiwithJohnsHopkinsUniversityinBaltimore,IanD.DuncanwiththeUniversityofWisconsininMadison,Charlesffrench-ConstantwiththeUniversityofEdinburghandGavinGiovannoniatQueenMaryUniversityofLondonandtheirteamsreportedontheirprogress in all three goals of the repair initiative with the ultimate goal of pavingthewayforclinicaltrialstoprotectthenervoussystem,repairthedamage and restore function in people with MS.
Goal 1: Develop new disease models to screen repair and protection techniques Teams made great strides in developing new tools to investigate myelin damage and repair. It is now possible to grow nerves and myelin-makingcellsinlabdishesandexploremolecularsignalsengagedinrepair.New treatment strategies cannot be tested without therapeutic targets
NerveRepairTeamsReport‘Remarkable’Results
r e S e a r C H
From National MS Society reports
MSConnection • SPRinG 201146
being discovered and without the development of animal models for testing safety and effectiveness before studies can begin in people.
In brief:• Newtherapeutictargetshavebeenidentified
fromextensivescreensoftissueculturesystems,genesandproteins;earlytestsinrodentsarepromising.
• Therehavebeenexcitingpre-clinicalbreakthroughs in cell-based therapies.
• Amousemodelofsecondary-progressiveMSisestablished and being used to test therapeutic candidates.
Investigatorsusedthelatestin“omics”technology–suchasgenomics,whichscreensmultiplegenessimultaneously–toidentifynewtargetsforMStherapies.Drs.StephenP.J.FancyandDavidRowitchoftheUniversityofCaliforniaatSanFrancisco,RobinJ.M.FranklinatCambridgeUniversity,andcolleaguesconducted high-tech screens to detect the activity of genes–calledtranscriptionfactors–thatcontrolothergenes.Among1,040transcriptionfactorgenesthatwereactiveinmiceduringtheprocessofmyelinrepair,theypinpointedthe“Wntsignalingpathway.”Furtherexperimentsshowedthatthispathwaymayplayanimportant role in the failure of myelin to repair itself in people with MS. Drs.JeffreyK.HuangatCambridgeUniversity,ffrench-Constant,Franklinandcolleaguescreateda“transcriptome”–acompletepictureofribonucleicacid(RNA)activityduringspontaneousmyelinrepair.RNAisthechemicalthatdeliversinstructionsfromagenetoacell.Resultsshowedhighlevelsofactivityforthegenethatcontrolsamolecule–calledretinoidacidreceptor-gamma–andfurtherstudyshowedthatthis molecule appears to stimulate the brain’s natural ability to repair myelin in rodents. Investigators funded through this initiative have propelled research on cell-based therapies with groundbreakingresults.Dr.StevenA.GoldmanandcolleaguesattheUniversityofRochesterinNewYork transplanted human immature myelin-making cellsintomicebornwithoutmyelin,resultinginwidespread myelin formation and restoration of neurologicaldeficits.Dr.GianvitoMartinoand
colleaguesatItaly’sSanRaffaeleScientificInstitutetransplanted nerve stem cells into models with MS-like disease,stimulatingrepairandreducinginflammation.This team is nearing a phase I study of this strategy in people with MS. Dr.Duncanandcolleaguesstudiedamodelwhere a neurological disease can be induced and resolvedthroughspontaneousrepair,restoringneurologicalfunctiontonormal;thismodelwillhelpto understand the natural mechanisms of repair and howtheytranslatetosymptomsexperiencedbypeoplewithMS.Inatrulyexcitingeffort,Dr.Franklinand collaborators showed that cells from young mice couldenhancemyelinrepairinoldermice,givingnewinformation on a possible role of aging in nervous system damage and new possibilities for inducing repair.
Goal 2: Apply advanced MRI and other non-invasive monitoring tools to detectnervous system protection and repair Developingwaystomeasuredamageandrepairwasanothergoal,withresultsrangingfromsimpletests of function to cutting-edge technology.
In brief: • Asimple,quickeyetesthasbeenvalidatedas
amethodofshowingnervefiberdamageandhealth.
• Novelimagingtechnologiescandetectmyelinandnervefiberdamageandtrackitovertime.
• Apossiblebiologicalmarkerofdiseaseprogressionhasbeenfoundinspinalfluid.
• Simplefunctionaltestsmaycorrelatewithunderlying disease activity and hold promise for use in clinical trials.
LauraBalcerwiththeUniversityofPennsylvania,ElliottFrohmanwithTheUniversityofTexasSouthwesternMedicalCenteratDallas,andCalabresi,LaurenTalmanandcolleaguesconfirmedthatopticalcoherencetomography(OCT)canmeasurethehealthofthenervefibersinthebackoftheeye.Thissimple,quickmethodcanshowhowmuchnervefibersintheeye are damaged. Changes can be observed in people withMS,eveniftheydon’thaveeyeinflammation. Drs.D.M.HarrisonatJohnsHopkinsUniversity,
MovinG ToWARd A WoRLd FREE oF MS 47
DanielReichattheNationalInstitutesofHealth,Calabresi and colleagues showed that other novel imagingtechnologies–suchasdiffusiontensorimaging(DTI),whichmeasurestheflowofwaterparticlesintissue,andmagnetizationtransfer,whichmeasuresthetransferofenergyparticles–couldspecificallydetectmyelinandnervefiberdamageandtrack them over time. Drs.SharmileeGnanapavanatQueenMaryUniversityandGiovannonisearchedforbiomarkersthat would indicate tissue damage or repair via a blood orspinalfluidsample.Thisresearchhasindicatedseveralpossibilities,includingneurofilament,athreadlike molecule found in nerve cells that can be measuredinspinalfluid.Neurofilamentlevelsmaybe a good indication of whether nerve cells are being damaged and whether disease is progressing. If validatedinfurtherresearch,measuringneurofilamentmayprovetobeaquickmeasureofwhetherpotentiallyneuroprotectivedrugsareworking,enabling faster clinical trials. Drs.AaronField,AndrewAlexanderattheUniversityofWisconsin-MadisonandcolleaguesreportedonanefforttocombineDTIanddiffusionspectrumimaging,whichenabledthemtoexaminenervefibersthatintersecteachother.Theteamhasbeenabletominimizetheimagingtimenecessaryforthis hybrid approach and increase its accuracy. Scientists also reported progress in using clinical teststhatcanassesssymptomssimply,butmaycorrelatewithunderlyingdiseaseactivity.Drs.KathleenM.Zackowski,Calabresiandcolleaguesshowedthat“sensorimotor”dysfunctionthatwaspicked up by testing vibration sensation and ankle strength correlated with disease activity on advanced MRItechnology.Also,Dr.Balcer’sresearchindicatesthattestsofvisualacuity–perceptionoflightgraylettersofprogressivelysmallersizeonawhitebackground–correlatewithOCTandotherimagingresults.
Goal 3: Design human clinical trials of repair and protection therapies. The ultimate goal of this initiative was to lay the groundwork for clinical trials of strategies to protect and repair the nervous system.
In brief:• Clinicaltrialsareunderwaytoevaluate
experimentalstrategiesfornervoussystemprotection and repair.
• Newclinicaltrialdesignsandoutcomemeasuresare in development to speed up the testing of promising agents.
• Collaborationsareexpeditingandenhancingthequalityofclinicalresearch.
Hereisasamplingofstudiesthatareunderwayorplanned in collaboration with team members of this initiative:•Dr.Rowitchisconductinganindustry-backed
PhaseIstudytostudythesafetyofneuralstemcell transplantation in children born with a lack of myelin;thissmall,earlystudywouldalsoserveasa“proofofprincipal”forthisstrategy.
•Dr.RajKapoorwithLondon’sNationalHospitalforNeurologyandNeurosurgeryislaunchingaPhaseII study of phenyltoin to determine its effects onneuroprotectioninopticneuritis,fundedbythe National MS Society and the MS Society of GreatBritainandNorthernIreland;thestudydesign takes lessons learned from a failed study oflamotrigineinSPMS.Boththesedrugsaresodiumchannelblockers,drugsthatenabletinyporesalongnervefiberstoimprovenerveimpulseconduction.
The value of collaboration Team leaders unanimously agreed that this collaborationhasmovedthefieldofrepairinMSforwardexponentially. Dr.CoetzeenotedthattheSocietyisevaluatingprogram outcomes to determine how to sustain the momentumcreatedbytheseteams:“Wearegoingto continue to move our work forward and share it worldwide to continue to speed research to repair the nervous system in MS. The dream is stopping MS in its tracks and of restoring function that has been lost. This is topmost in the hearts and minds of people who have MS,aswellastheirlovedones.”
MSConnection • SPRinG 201148
HigherlevelsofsunexposureandhigherbloodlevelsofvitaminDwerebothassociatedwith
decreasedriskofhavingafirstdemyelinatingeventthatcanbethefirstindicatorofmultiplesclerosis,according to a comprehensive study in Australia called theAusimmuneStudy.Afirstdemyelinatingeventisalsoknownasclinicallyisolatedsyndrome(CIS),afirstneurologicepisodecausedbyinflammation/demyelination in the brain or spinal cord. RobynLucas,Ph.D.,andAnthonyMcMichael,Ph.D.,withTheAustralianNationalUniversityinCanberra and colleagues across Australiareportedtheirfindingsinthis study supported by the National MSSociety,theNationalHealthandMedicalResearchCouncilofAustralia,theANZWilliamBucklandFoundation,andMSResearchAustralia. Inallpartsoftheworld,MSismore common at latitudes farther fromtheequatorandlesscommoninareasclosertotheequator.Previousstudieshavefoundevidencesuggesting that higher lifetime exposuretosunlight–throughwhichtheskinmakesvitaminD–andhigherbloodlevelsofvitaminDmayreduceaperson’srisk of developing MS. The Ausimmune Study investigated whether increasedexposuretosunlightinthoselivingclosertotheequatorandtheresultantvitaminDmaybeprotective against MS. The team investigated sun exposureandvitaminDlevelsinpeoplewhohadnotyetbeendiagnosedwithMS,butwhohadexperiencedaCIS,whichoften,butnotalways,leadsto a diagnosis of MS. Investigators recruited participants who were between18and59yearsofage,andwholivedin four geographic regions of Australia between
Nov.1,2003,andDec.31,2006.Thefourregionswerecharacterizedbydifferingdistancefromtheequator.Atotalof216peoplewereenrolledwhohadexperiencedaCIS.Atotalof395controlswererandomlyselectedandmatchedtotheCIScasesinage,gender and study region. Sunexposurewasmeasuredinseveralways,including by participant reports on how much time they spent in the sun during different periods of lifestartingfromage6,andalsobyexaminationofthe skin for sun damage and measurements of skin
pigment. The latitude and longitude of participants’ residence were also recorded as an indicator of ambient ultravioletlight.VitaminDlevelswere measured by a blood sample taken at entry into the study. ResultsshowedthathigherrecentorlifetimesunexposureandhigherbloodlevelsofvitaminDatstudy entry were independently linked with a reduced risk of CIS. Investigators reported that people withthehighestlevelsofvitaminDat entry were less likely to have a CIS than those with the lowest levels. Takentogether,differencesinsun
exposure,vitaminDlevelsandskintypeaccountedfora32.4percentincreaseinCISincidencefromthelowto high latitude regions of Australia. ThefindingsprovideadditionalsupportforprevioussuggestionsthatsunexposureandvitaminDmay help protect against developing MS. It remains to be seen whether safe and effective strategies can bedevelopedthatutilizethispotentialprotectionwithouttherisksinvolvedinoverexposuretothesunoroverdosesofvitaminDsupplements,andwhetherthesefindingshaverelevanceforindividualswhoalready have MS.
Study:RiskofFirstNeurologicEventDecreaseswithSunExposureandVitaminD
r e S e a r C H
MovinG ToWARd A WoRLd FREE oF MS 49
Six-monthprogressreportsfromsevenmulti-disciplinary teams investigating chronic
cerebrospinalvenousinsufficiency(CCSVI)inMS indicated that they have established rigorous protocols,aresuccessfullyrecruitingparticipants,andare on-track to evaluate and deliver important data when the two-year projects are completed. Allsevenstudiesaretwoyearsinlength,butwillbecloselymonitoredwhileinprogresstoexpediteclinical trials should data show they are warranted.ThestudieswerelaunchedJuly1,2010withmore than$2.4millionfromtheNationalMSSocietyandthe MS Society of Canada. OwingtothesignificantinterestintheMScommunityaboutCCSVI,theSocietyisprovidingsix-monthupdatesratherthanthemorestandard12-month reporting cycle. The studies employ rigorous blinding and controls designed to attain objective and comprehensive data. Full research resultswillbeavailableaftersignificantlymorescanshavebeencompletedandevaluated,involvingmorethan1,300peoplerepresentingaspectrumofMStypes,severitiesanddurations. JonTemme,seniorvicepresidentofresearchandprogramsfortheMSSocietyofCanada,said,“Thegrants were selected for having the greatest potential toquicklyandcomprehensivelydeterminethesignificanceofCCSVIintheMSdiseaseprocess.Itisvery encouraging to see how effectively the work has advancedamongallgroups.” Thefundedinvestigators,whichincludeanintegrationofMSandvascularexperts,reportedprogressinestablishingtheirteams,puttingtheirprotocolsinplace,recruitingparticipantsandbeginning their studies:
Dr. Jerry Wolinsky, The university of Texas Health Science Center at HoustonHisteamappliedinadvanceandobtainedInstitutionalReviewBoardapprovalinthespring,andtheteam’sneurosonographer has received intensive training forintracranialandextracranialultrasoundscanningtechniques.Theteamhasalreadyscannedasignificantnumberofparticipants,whichincludepeoplewithdifferenttypesofMS,peoplewithotherconditionsand people with no known health problems. One challengethatDr.Wolinsky’steamisaddressingisthedifficultyofrecruitingnon-MScontrolsubjectswho don’t have a personal interest in the purpose of the trial. The team is testing whether other imaging methodscanconfirmtheultrasoundfindings,whileidentifyingthemostreliabletechniquetoscreenforCCSVI.
Dr. Brenda Banwell, The Hospital for Sick Children, Toronto, ontarioHerteamreceivedResearchEthicsBoardapprovalinthe fall. The team has begun enrolling participants and studying vein abnormalities in children and teenagers withMS,andhealthycontrolsofthesameage,usingnon-invasiveMRImeasuresofveinanatomyandnovelmeasuresofvenousflow,aswellasultrasound.
Dr. Fiona Costello, Hotchkiss Brain Institute, university of Calgary, Calgary, AlbertaHerteamreceivedResearchEthicsBoardapprovalinthe fall to begin recruiting a cross-section of people with MS compared to other neurological diseases and healthy volunteers. They also recruited two ultrasonographyexpertswhohavebegunultrasoundscanning.Dr.Costello’steamslowedrecruitmentbrieflytoupgradetoanew3TMRImachine–twice
ResearchTeamsReportProgressfromFirstSixMonthsofCCSVIProjects
r e S e a r C H
MSConnection • SPRinG 201150
asstrongasstandardclinicalMRI–thatwillbeusedtoperformMRvenographyscanstocompareagainsttheultrasound tests.
Dr. Aaron Field, university of Wisconsin School of Medicine and Public Health, MadisonHisteamwillbeusingMRvenographyandultrasoundtechniquestoinvestigateCCSVIinpeoplewithearlyandlaterMS,controlswithotherconditionsandhealthy volunteers.
Dr. Robert Fox, Cleveland Clinic, ClevelandHisteamhasreceivedInstitutionalReviewBoardapprovalforusingMRvenography,ultrasound,MRIand clinical measures in people with MS or who are at riskforMSandcomparisongroups,andrecruitmentis ongoing. The team has obtained a new ultrasound machine previously used in other CCSVI studies.
Dr. Carlos Torres, The ottawa Hospital, university of ottawa, ontarioHisteamobtainedResearchEthicsBoardapprovalinthewinterandbeganthefirstphaseofscanningusingMRvenographyinpeoplewithoutMS,whichwillbe
used to compare with various scans in people with MS. Team members are slated to be trained using ultrasoundtechniquesandareon-tracktorecruitmoreparticipants for the study.
Dr. Anthony Traboulsee, uBC Hospital MS Clinic, uBC Faculty of Medicine and Dr. Katherine Knox, Saskatoon MS Clinic, university of SaskatchewanTeamsatbothsitesreceivedResearchEthicsBoardapproval and have begun to recruit and scan participants. They are also using catheter venography andMRvenographytoinvestigatetheprevalenceof CCSVI in people with MS and controls without MS.TheradiologistsontheteamsofDrs.TraboulseeandKnoxmetinFebruarytoensureconsistencyofprotocols across sites. Teams are on-target for accrual of recruits and completion of the study.
MovinG ToWARd A WoRLd FREE oF MS 51
National Multiple Sclerosis SocietyLone Star Chapter8111NorthStadiumDrive,Suite100Houston,Texas77054
top related