Fall 2011 MSConnection: Lone Star

Fall 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

MS Activists Score Big Wins in

2011 Session

National ConferenceSet for Big D

Step-by-Step Journeyof 100 Miles

Texans Rallyfor Walk MS

Partying with Purposein the Big Easy

MS Activists Score Big Wins in

2011 Session

Also in this issue:Also in this issue:

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




Fall 2011Volume 5 • Issue 4

Individuals interested in being considered for nomination to the Board of Trustees should submit a letter of interest and a biography, along with name, mailing address, email address and phone number. Nomineeswillbenotifiedofboardmember expectations, responsibilities, fiduciaryandtimecommitments.Finalcandidates will be interviewed by a

member of the Governance Committee. Nominations for the Board of Trustees must be submitted by Nov. 15, 2011 to:

Mark NeagliNational MS Society8111 N. Stadium Drive, Ste. 100Houston, TX 77054

offices Closed forupcoming Holidays

Dallas is on the Move Nov. 11

Nominees for Board of TrusteesNow Being Accepted

The 5th Annual Women on the Move Luncheon takes placeFriday,Nov.11,atTheRitz-CarltoninDallas.Scheduled speaker is Cami Walker, author of “29 Gifts: How a Month of Giving can Change Your Life.” Women on the Move is a nationwide program created to raise funds and awareness for MS. In its fifthyear,thisprogramhastouchedthelivesofmorethan 2,000 people across Texas and raised nearly $350,000.Forinformation,contactShelleyKaiserintheSociety’[email protected].

SocietyofficeswillbeclosedforThanksgivingNov.23-25, 2011. In observance of year-endholidays,Societyofficeswillbeclosedfrom Dec. 22, 2011 to Jan. 2, 2012. We will reopen in the New Year on Tuesday, Jan. 3, 2012.

Plug into Local Careers withthe National MS SocietyThe National MS Society is interested in professionals who share our vision of a world freeofMS.InTexas,theSocietyhasofficesinAmarillo,Austin,Dallas,FortWorth,Houston,Lubbock, Midland and San Antonio. Additional officesintheSouthCentralUnitedStatesarelocatedinAlbuquerque,N.M.;LittleRock,Ark.;New Orleans, La.; and Oklahoma City and Tulsa, Okla. To search current career opportunities

withtheSocietyofficenearyou,goonlinetovisitJointheMovementLoneStar.org.Fromthehomepage,clickAboutUsintheleft-handnavigationbar,followed by the Career Opportunities link.

MoviNG ToWARD A WoRLD FREE oF MS 3

Even in uncertain economic times, volunteerism is thrivingintheSouthCentralUnitedStates. According to a comprehensive Volunteering in America report released in August from the Corporation for National and Community Service,

Oklahoma is the top state in the region, with an average volunteer rate of nearly 30%. It is followed byNewMexico(26.2%),Texas(23.8%),Louisiana(21.9%)andArkansas(21.4%).Utahisthetopstateinthe nation with a volunteerism rate of 44.5%.

Volunteers Answer the Callto Help Their Communitiesby James Black

MSConnection • FALL 20114

National ResultsMorethan62millionAmericansonaveragevolunteered 8.1 billion hours in 2010. The median number of hours served per volunteer rose from 50 in 2009 to 52 in 2010. According to the report, the total estimated value of volunteer service in 2010 was $173 billion, based on the average value of a volunteer hour, whichwasestimatedat$21.36lastyear. It was noted that members of Generation X – thosebornbetween1965and1981–havemorethan doubled their volunteer rate since 1989. In 1989, 12.3%ofthisgroupvolunteeredwithanorganization;by 2010, the rate had increased to nearly 30%.AcrosstheUnitedStates,volunteersarehelpingorganizations–particularlynonprofitagenciessuchas the National MS Society – serve the country’s mostvulnerablecitizens.Asnonprofitorganizationscontinue facing budget challenges and fewer resources, the contributions made by volunteers become more vital than ever. Most volunteers nationally devoted their time to fundraisingefforts(26.5%),followedbycollectingordistributingfood(23.5%)andgenerallabor(20.3%). On a national level, people volunteered most oftenwithreligiousorganizations(35%),followedbyeducationalfacilities(26.7%)andsocialservicegroups(14%). Geographically,mostU.S.volunteersin2010livedinruralareas(27.9%),narrowlyoutdoingthoseinthesuburbs(27.5%)andoutpacingresidentsinurbancenters(22.9%).

South Central States ResultsWhen examining volunteerism for residents in Arkansas, Louisiana, New Mexico, Oklahoma and Texas, the Lone Star State was the only one in which fundraising was not the top volunteer activity. Collectinganddistributingfood(25.7%)wasthetop job for Texas volunteers, followed closely by fundraising at 24.9%. Mirroring the national trend, state volunteers chosetohelpreligiousorganizations(arangeof38-43%acrossthefivestates),followedbyeducationaland social service groups.

Geographically, those in Texas’ suburban and rural marketswerenearlyneck-and-neck.Morethan25%ofLone Star volunteers lived in the suburbs, with 24.9% in rural communities and 22.3% in urban markets.AcrossallfiveSouthCentralstates,however,ruralvolunteers contributed the most hours, ranging from 52 hours in Arkansas to 72 hours in Oklahoma. In Texas,ruralvolunteersworkedanaverageof64hours,comparedwith56suburbanhoursand48cityhours.

City Comparisons InthefiveSouthCentralStates,Oklahomahadthe top two volunteer rates per city: Oklahoma City (32.1%)andTulsa(31%).Theremainingtop10SouthCentral cities based on volunteer rates were Dallas (27.7%);Albuquerque,N.M.(26.7%);BatonRouge,La.(25.6%);LittleRock,Ark.(25.3%);NewOrleans,La.(24.4%);Austin(24%);SanAntonio(22.5%);andHouston(22.5%). FundraisingwasthetopvolunteeractivityinAustin;ElPaso;Lafayette,La;LittleRock;NewOrleans;Oklahoma City; and Tulsa. The collection, distribution and serving of food was the top job for volunteers in BatonRouge,Dallas,HoustonandSanAntonio,whiletutoring was the top activity for Albuquerque, N.M. andFayetteville,Ark.volunteers. Wherever they call home, South Central volunteers are making powerful differences in their communities.

Visit www.VolunteeringinAmerica.gov to read the complete volunteering report.

Learn more about volunteering locally with the National MS Society and helping persons living with MS in your community. Visit www.volunteerMS.org or call1-800-344-4867(press2).

James Black is the editor of MSConnection and a Strategic Communications Specialist in the Society’s [email protected].


Advocacy Champion: Kim CampbellKimCampbellisanMSactivistfromKyle,Texas.Kimwasdiagnosedwith MS nearly three decades ago, but she has never let her diagnosis stopherfromtakingaction.Kimreachesouttoherlocal,stateandfederal legislators to advocate for disability rights, support for family caregivers and access to services. Together with her husband Gary and sister Linda, she is dedicated to improving the lives of people with MS through advocacy.

Programs and services Champion: Jack engleJackEnglewasdiagnosedwithMSin1996.AresidentofKingwood,Texas, Jack has been a volunteer for the National MS Society since 2002, whenhevolunteeredforhisfirstFamilyDiscoveryCamp.Sincethen,hehas taken on many key leadership roles, but is best known for creating the woodworking kits each camper can build. Additionally, Jack is anMSAmbassadorandvolunteerseachweekattheHoustonoffice,where he shares his smile, jokes and laughter each week.

scientific Researchers Champion: Dr. Thomas ForsthuberThomasG.Forsthuber,M.D.,Ph.D.,isProfessorofImmunologyandAdjunctProfessorofPathologyatTheUniversityofTexasHealthScienceCenteratSanAntonio.Dr.ForsthubersupportstheSocietyin engaging, inspiring and generating hope for the future through researchpromotion.Inhis20-yearcareerstudyingMS,hehasreceivednumerous honors, including the Harry Weaver Neuroscience Scholar Award of the National MS Society in 1997. He is Deputy Editor for the journal Cellular Immunology, and serves as a reviewer for a number of scientificjournalsandfundingorganizations,includingtheNationalMS Society.

Meet Our 2011 VolunteerHallofFameInducteesAt the National MS Society’s 2011 National Conference in Dallas Nov. 2 – 4, the following peoplewillbeinductedintotheSociety’sVolunteerHallofFame.Recognitionaspartofthiselitegroup is one of the highest honors awarded to volunteers with the Society.


Health Professionals Champion: Dr. George HuttonGeorgeHutton,M.D.,isChairmanoftheSociety’sSouthCentralRegionalClinical Advisory Committee and a champion for everyone with MS. As AssistantMedicalDirectorandClinicalResearchDirectoroftheMaxineMesinger MS Comprehensive Care Center at the Baylor College of Medicine, and Director of the MS Clinic at Ben Taub General Hospital in Houston – to name only two of his many roles – Dr. Hutton continues to share his profound expertise in the vital areas of research, education and contribution to the care of persons with MS.

Programs and services Champion: Brett maxwellFortWorth,TexasresidentBrettMaxwellwasdiagnosedwithmultiplesclerosisinApril2002.Forthepasteightyears,hehasvolunteeredwiththe National MS Society, playing a key role in the Service Provider project by updating and adding new community resources throughout Arkansas, Louisiana and Texas databases. Brett provides the essential information for MS Navigators to assist persons with MS and their families. His efforts have helped the Society update its service providers by 95 percent.

Hundreds of persons living with MS and volunteers from across the United States will take part in the National Multiple Sclerosis Society’s 2011 National Conference in Dallas Nov. 2 – 4. The conference offers opportunities to hear about advances in research, upcoming projects in the MS pipeline and personal stories from those who are committed to the MS movement. In addition, the Society’s volunteer leaders of 2011 will be honored. To take part, visit the Society’s website at www.nationalMSsociety.org. Details on conference location, registration, applicable fees and more are available online or by calling 1-800-344-4867 (press 1).

Society’s 2011 NationalConference Heads to Big D


The Society established its scholarship program in2003.Initsfirstyearofoperation,theprogramawarded36scholarshipsforatotalof$68,000.Since then, this important initiative has continued to grow; in 2011, more than $1 million was awarded nationwideto639scholars,anincreaseof149students since 2010. Regionally,theNationalMSSocietyispleasedtoannounce the 2011 scholarship recipients in Arkansas, Louisiana, New Mexico, Oklahoma and Texas. This year,theSocietywasabletoaward61college-boundstudents with scholarships ranging from $1,000 to $3,000 each. Nationally in 2011, 811 students submitted scholarship applications, up from 742 in 2010, a clear demonstrationoftheneedforthistargetedfinancialassistance program.

The continued increase in the number of awarded scholars demonstrates the Society’s ongoing commitment to supporting students affected by multiple sclerosis throughout their academic careers. This year, the Society was able to fund 439 new applicants – up from 313 last year – and 200 renewals – up for 177 in 2010 – for nearly $1.2 million. While this was an increase of $178,950 from 2010, the Society was not able to fund all of the deserving students who applied. Support for the scholarship program comes from foundations, individual donors, the Society’s own employee-givingprogramandothersources. You can help turn a student’s college dreams into reality when you support the National MS Society’s scholarship program. To learn more, contact your local Societyofficebycalling1-800-344-4867(press2).

2011 ScholarshipRecipientsAnnouncedMultiple sclerosis shouldn’t stand in the way of an education. This iswhy the National MS Society’s scholarship program exists: to help highly qualifiedstudentswhohavebeendiagnosedwithMSorwhohaveaparent with MS achieve their dreams of going to college.


ARkANSASDallas BarnettHannah CokerBrittany CurryKatherineKordsmeierAshleyRenegarKellyStrickland

LouiSiANASamantha GuidryLauren LejeuneTroy NortonJoshuaRandallGill Walker Jr.

NEW MExiCoKristineDavisMaraka HannaganKathrynSanchez

okLAHoMAMary BarkerKennethBlackTracy GilliamKatieHansonAlyson HeathJeremyKinseyGrant MorganCallie MortSethRutledgeWhitney SterettMackenzieStout

TExASKellyAmmonsKelseaBakerBradley BellowsLauren BrewerElliot Cleaver

KrystalCortezKaylaDavisKatherineDeHavenAustin DuvalSkyler EwingSaraFuerstHaley GastonKamronGatlinBrandi HarrisonTaylor HatchDavid HattebergAvery JonesEmily JonesBridgetteKiefferChelsea LemonsRyeinMarksAnnMartinezAnisha MathewMandi Moran

ReidMungerPaige NowlinAustin PayneBridget PettyLydia SancerAubrey ScottKierstenSmithZachary SmithBrenna StubbsKassieTrevinoJustin WilliamsEmily Windolph

The Society’s 2011 South Central scholars – listed in alphabetical order by state – are:

The National MS Society offers a scholarship program for students living with multiple sclerosis or who have a parent living with MS. Applicants must be planning to attend an accredited post-secondary school for the first time and to take at least six credit hours per semester leading to a degree, license or certificate. Each recipient is selected based on financial need, academic performance, compelling personal or family circumstances, and an applicant’s essay on the impact of MS on his or her life. Awards range from $1,000 to $3,000 for one year. A small number of four-year awards are also offered.

Starting Oct. 1, 2011, scholarship applications for 2012 are available on the Society’s website. There is no application fee for Society scholarships. Completed applications and supporting materials must be submitted by mid-January 2012. For guidelines and applications, visit www.nationalMSsociety.org/scholarship or call the Society toll-free at 1-800-344-4867 (press 1). The Society’s website also has an informative list of additional scholarship opportunities, including federal assistance and other financial aid resources.

2012 Scholarship ApplicationsAvailable Online


While many people have holiday wish lists at this time of year, the National MS Society’s wish list is in season

year-round. FinancialgiftsprovidetheSocietywiththemostflexibilityin delivering programs and services to people living with and affectedbymultiplesclerosis.Werecognize,however,thatmany people have resources and connections to a variety of needed products and services that can also help us achieve our goals. If you would like to donate any of the items listed below or know someone who can, contact Taylor Mallia with Strategic PhilanthropyintheSociety’sHoustonofficebycalling1-800-344-4867orviaemailattaylor.mallia@nmss.org.

Stuff Our Stocking for the Holidaysand Beyond

• Airlinetickets• Artandsportingeventtickets• Audio/visualequipmentandservices• Bannersandsignage• Beverages• Catering• Children’sactivities• Eventsupplies,includingtents, tables and chairs• Floristservices• Food• Giftcertificatesorgiftcards(anystore)• Gifts/giveaways• Homemodificationequipment or services• Hotelaccommodations

• Ice• Officesupplies,includingpaper, mailinglabels,toner,etc.• Professionalphotographyservices• Professionalprintingservicesfor postcards,brochures,posters,etc.• Plaques/awards• Plastic/paperproducts• Portabletoiletsatfundraisingevents• Postage• Rentalandrefrigeratedtrucks• Restaurants(receptions,gift certificates,etc.)•Walkers•Wheelchairs


Editor’snote:AfteranoutstandingtenureasRegionalVicePresident,StrategicPhilanthropy,KristenStubbs is leaving the Society for the next stage of her professionalcareerinthenon-profitsector.Wewishher well in her continuing service to our community andarepleasedtoshareherfinalyear-endreviewcolumn with our MSConnection readers.

Iamalwaysamazedathowquicklytimefliestheolderweget.RememberwhenasalittlekidyouthoughtChristmas would never come? Well, here we are again windingdowntheyearandreflectingoncemoreonwhere we have been, where we are now, and where we will be going in 2012. At the National MS Society, we are going places! We are going places with our research, with our medication development, with our events, and with our programs and services for people living with MS. OurnewMSResearchRevolution:NoOpportunityWasted initiative to raise $250 million by 2015 is in full force and we are busy identifying donors who can make that lead gift to fund crucial research to Stop the progressionofMS,RestorelostfunctionandEndMSforever.Stop*Restore*EndisournewmantraaroundtheSocietyandIinviteyoutobecomeaResearchChampion along with thousands of other people who want to do something about MS NOW! To see the latest and greatest research initiative from the Society, go to www.nationalMSsociety.org/research/now-champion/index.aspxandtakethe10-minuteResearchChampioncoursetojointhousands of other people who are a part of the MS ResearchRevolution.

Speaking of research, what a difference a year canmake.In2011,wesawtheveryfirstoraldisease-modifying drug come to market. What a breakthrough! ForsomepeoplelivingwithMS,theycannowtakea simple pill called Gylenia instead of using a needle and giving themselves an injection. The development of this drug was made possible by donors who have given generously throughout the years. We can’t make a difference without you. OurvariousSouthCentralofficescontinuetoprovidemanyimportantandlife-changingservicesto people living with MS, their families and the health care providers who serve them. We continue to help peopleinfinancialcrisis,holdwellnessandexerciseclasses throughout the region, and provide expert information and referral services, as well as execute walks and bike rides which serve to provide a rallying point for people who want to help. Again, all of these programs and events are possible because of the support from our fundraisers and donors. Asyouconsideryouryear-endgift,pleasekeepin mind the tens of thousands of people in our region who live with MS. Please keep in mind the many opportunities that are available for volunteers and donors.Pleasekeepinmindthatyourtax-deductiblegift may provide help for someone in crisis. And lastly, please keep in mind that MS stops people from moving. We exist to make sure it doesn’t.

Ifyouwouldliketomakeayear-enddonationtotheSociety, please contact Taylor Mallia at [email protected].

AYearinReview:How Individual GivingMakes a DifferencebyKristenStubbs


ReadAllAboutItwith Lending Library

In support of our mission, the National MS Society provides access to accurate, current and comprehensive information to people with MS. Books and other media resources are available through the Lending Library at no cost to those with MS and their families. To browse the Lending Library and place an order, visit JointheMovementLoneStar.org and click the “Library and Literature”linkintheleft-hand navigation tab. Uponplacinganorderwiththe Lending Library, please know that we will work diligentlytofillyourrequestinatimelymanner.Note that some books may be currently checked out by other members at the time of your order. We will keep a record of your entire order and, as materials become available, they will be mailed to you. To

meet the amount of requests received, two books will be sent at a time. If you request more than two books, the remainder of your order will be mailed in increments of two upon the return of the books initially mailed to you and according to availability. This process will continue until your order is

complete. Items are loaned out for a three-weekperiodtohelpmeet the requests of other members. Included with your shipmentwillbeapostage-paid return envelope so books may be returned at no charge to you. If you wish to keep the books for longer than three

weeks,contactourofficetorenew.Brochuresareyours to keep and do not need to be returned. If you have questions about your order, call the Societyat1-800-344-4867(press2).

To browse the lendingLibraryandplaceanorder,visitJointheMovementloneStar.org

and click the “library andliterature” link in the left-hand

navigation tab.


Managing your health and wellness is an integral part of living well with multiple sclerosis.

LiveFully,LiveWellisacomprehensivewellnessprogram from the National MS Society and Can Do MS, designed for people with MS and their support partners. LiveFully,LiveWellcoverstopicsaffectingthe whole family living with MS to strengthen relationships, increase understanding and promote improved health and quality of life. All areas of this free program provide you with the resources, knowledge andtoolstocreateapersonalizedwellnessplan. Take part through upcoming webinars on the following 2011 dates and topics:

Oct. 20Planning for Your Future

Nov. 17How Does Exercise Fit into Your Life with MS?

Dec. 1Eating Well, Eating Easy

You can sign up for these free webinars on the Society’s website. Visit nationalMSsociety.org, then click the Living with MS link, followed by the Live Fully,LiveWelllink.

While online, you can also view past webinars on subjectssuchasattendingtoyourhealth,maximizingmobilityandachievingindependence,fatigue-relatedchallenges, and recreational activities and travel.

live Fully, live Well In-Person Program Comes to Dallas Nov. 5 Persons with MS, their spouses, family members and friends are encouraged to attend the upcoming LiveFully,LiveWellin-personprograminDallasonNov. 5. The free program will include presentations andworkshopsonmoodandcognition,prioritizingyour time and activities, and attending to your health.Registrationforthein-personprogramclosesat1p.m.Friday,Nov.4.Thisprogramtendstofillquickly,soregister today via the contact information below. There will be no registration on the day of the event.

live Fully, live Well In-Person ProgramSaturday,Nov.5,2011•8:30a.m.–3:15p.m.

Dallas, TexasLocation to be announced.

(Askfordetailsatregistration.)

To register or for more information, contact Can [email protected].

LiveFully,LiveWellProgramPromotes Wellness and Health


DougRyanlikestorun.He’sspentyearsrunningmarathons and ultra marathons, even running

100-milemountainraces.AllofthatroughterrainwasroughonDoug’sbody,so,inanefforttostayfitbutbe kinder to his body, Doug turned to the elliptical machine at his local gym. Last year, during a daily workout, the Hickory Creek, Texas resident was struck with a thought: “I bet I could do 100 miles on this machine.”Thatfleetingthoughtturned into a test of endurance and a mission of love. Not only would he run 100 miles on that machine, he would raise awareness and funds for a cause close to his heart. In 1997, Doug’s wife, Sherry, a professorattheUniversityofNorthTexas in Denton, was diagnosed with MS. An avid runner and athlete herself, she shared Doug’s passion forfitnessalongwithhis“cando”attitude. While Sherry’s MS has led her to use a wheelchair, it has not diminished her desire to stay active. Sherry teaches full-timeandcontinuestoworkoutnearly10hoursaweek. Over the years, Sherry has even developed innovative exercise routines involving winches, hand pedalsandgrabbars.Forexample,sheutilizesgrabbars to do squats, followed by isometric exercises with an elastic band and plastic ball, then wrapping up with bicep curls using a hammer.

Obviously, these two are up for any kind of challenge. When Doug told Sherry of his “Elliptical 100” idea, she immediately began helping him set up a fundraising account with the National MS Society andusedFacebook,Twitter,familyandgymsupport

systems. Earlier this year and with friends and family cheering for him, Dougbeganhis100-milestationaryjourneyat24HourFitnessinLewisville. With short bathroom and caloric intake breaks, he completed his personal endurance challenge and approachedthe“finishline”–andhisinspiration, Sherry’s smiling face – 18.5 hours later. Doug’s tremendous dedication and endurance raised more than $7,500 and made an immeasurable gift of love and support to his wife. Through humor and determination, Doug and Sherry plan to clear every possible hurdle they encounter, side by side.

Do you have a passion that could be a fundraiser or community event? If so, contact Sharon Ziegler with theNationalMSSocietyat432-522-2143formoreinformation.

LeeKilbornistheCommunityDevelopmentManageristheSociety’sNorthTexasoffice.Shecanbereachedat [email protected].

TexanTakesUniqueStepson100-MileJourneybyLeeKilborn


Cyclists Accept the Challenge in October

OctobermarkstheannualreturnoftheTexas-basedBikeMS:Valero2011AlamoRidetothe

River,presentedbyH-E-B,andtheBikeMS:Louisiana. In San Antonio, the 2011 Bike MS: Valero ride begins Saturday, Oct. 15. Thousands of participants begin their journey at the AT&T Center, home of the NBA Championship San Antonio Spurs. Led by the Velo Valero team and the top 10 fundraising teams, cyclistsembarkonatwo-daytrekto support everyone living with multiplesclerosis.Onthefirstday, Bike MS: Valero participants have their choice of three options covering47-,70-and100-mileroutes. All routes lead to their overnight home at the Comal CountyFairGroundsinNewBraunfels. FollowingbreakfastonSundaymorning,Oct.16,cyclistssaddleupforthe60-milereturntoSanAntonioandthefinishlineattheAT&T Center. In 2010, the Bike MS: Valero event raised more than $1.15 million. This year, the fundraising goal is $1.3 million. Earlier in the month, the good times will roll across two states with the Bike MS: Louisiana. The adventure begins Saturday, Oct. 1, at SoutheasternLouisianaUniversityinHammond,La.Ridersgetanearlystartontheir75-milejourneyonDayOne,fullysupportedonthewell-organizedand

carefully-plannedroutebysafety,police,medicalandSociety personnel. Along the way, participants cross the line – the state line, that is – as they head toward the overnight stop at scenic Percy Quin State Park in McComb, Miss. Knownforgoodfun,theBikeMS:Louisianais

also renowned for another Southern tradition:mouth-watering,belt-busting great food. No one goes hungry on this ride, where gumbo, red beans and rice, and meat pies are just a few of the delicious delicacies ready to satisfy cyclists’ appetites. At the overnight park pit stop, everyone chows down, rests and recharges while swapping a day’s worth of cycling stories and enjoying rockin’ entertainment from local bands. On Sunday morning, Oct. 2, it’s time to go down south again as riderspedal72milesbacktothefinishin Hammond, La. Last year, Bike MS: Louisiana participants raised more than $593,000.For2011,fundraisersare

targetingagoalof$663,000todriveMS-relatedservices and research.

Jointhefestivitiesasarider,volunteerordonor.Forinformation on the Bike MS: Valero event, visit www.bikeMStexas.org.FordetailsonBikeMS:Louisiana,visit www.bikeMSlouisiana.org.


ThousandsofresidentsinAustin,Houston,Katy,Kemah,SugarLand,TheWoodlands,Tyler,Waco

and their surrounding communities will lace up and step up this fall for the annual Walk MS series. Whether you walk, run, stroll or roll, Walk MS isafun,family-friendlyeventthat’sopentoeveryone, regardless of ability. You can join the festivities and team up with friends, family members,co-workersandneighbors. Walk participants raise crucial funds to support services and research in Texas and throughouttheUnitedStates.Thereisnominimum pledge for joining a local walk, but the average participant raises more than $225. Registrationforeachwalkisfree.Participants and volunteers will enjoy free refreshments and entertainment before and after the event. As the rallying point of the MS movement, Walk MS is a community coming together to raise funds and celebrate hope for the future. ForChristinaCooper,thepathtowardjoining the Walk MS: Austin began one morning whenherhusbandhaddifficultyspeaking.Doctors initially believed a stroke or brain tumors were the cause; ultimately, multiple sclerosis was diagnosed. “I will never forget the pain and fear I had of possibly losing my husband, the man I love with all my heart and the father of my children,” Christina wrote. “I pray that with all the help from family and friends we can raise enough money so when the future progresses I will always have him by my side.”

WalkMS:KemahfundraiserLisaAnders’involvement in the mission began when her mother needed assistance signing a check because her arm was numb. “A few days later, she went to a doctor and was

given the news. She had MS,” Lisa shared on her WalkMSWebpage.“Formy mom and thousands of others, there is hope, but no cure. With all our technology and medical advancements, understanding this disease still eludes modern science. It is my hope that by raising funds and awareness, we can finally,onceandforall,findthemeanstoendthisdebilitating disease.” In Tyler, Megan Barmore and Team Tammy Against MS are united in

their reason for walking. “My mom, Tammy Wimberley, was diagnosed with MS about nine to 10 years ago. It has obviously been very hard on her and those in her life,” Megan said. “I want to do everything to prevent more people from learning what it means to live with this disease.” HoustonTeamCaptainDianeRhoadsshared,“OursonJordanwasdiagnosedwithMSinFebruary.Ourdaughter-in-law’ssisterwasdiagnosedlastfall.

TexansRallyforFallWalksby James Black


saturday, oct. 1Walk MS: Waco, presented by SubwayHeritage Square3rd Street and Austin Avenue in WacoSite opens: 8 a.m.Walk begins: 9 a.m.

saturday, oct. 22WalkMS:Katy,presentedbyKBRKatyMillsMall5000KatyMillsCircleinKatyNote: Park at Entrance 8 near the AMC TheatreSite opens: 8 a.m.Walk begins: 9 a.m.

saturday, oct. 22WalkMS:TheWoodlands,presentedbyKBRRobFlemingPark6055CreeksideForestDriveinTheWoodlandsSite opens: 8 a.m.Walk begins: 9 a.m.

saturday, oct. 29Walk MS: AustinDell DiamondHwy.79at3400EastPalmValleyinRoundRockSite opens: 9 a.m.Walk begins: 10 a.m.

saturday, oct. 29Walk MS: Tyler, presented by SubwayRoseRudmanPark411 ESE Loop 323 in TylerNote:SiteisacrossfromtheRobertE.LeeHighSchoolfootballfieldSite opens: 8 a.m.Walk begins: 9 a.m.

saturday, Nov. 12WalkMS:Kemah,presentedbyKBRKemahBoardwalk2155KippAve.inKemahSite opens: 8 a.m.Walk begins: 9 a.m.

saturday, Nov. 12WalkMS:SugarLand,presentedbyKBRSugar Land Memorial Park15300UniversityBlvd.inSugarLandSite opens: 8 a.m.Walk begins: 9 a.m.

sunday, Nov. 13WalkMS:Houston,presentedbyKBRUniversityofHoustonmaincampus4800CalhounRoadinHoustonSite opens: 8 a.m.Walk begins: 9 a.m.

Although we have always supported fundraising functions for this disease, now it is personal. We as a family are doing what we can to increase awareness andbeinvolvedinfundraisingtoescalatethe‘Rhoadsto the Cure.’” KatyparticipantCrystalFloresisalsosettinganimportant goal for this year’s event. “If I accomplish one thing by attending this walk, I want to spread awareness,” Crystal wrote. “I want everyone to know exactly what MS is, what it does to people and how it can change lives, as well as family members directly involved on a daily basis.” SugarLandwalkerPeggyKovachwrote,“Iwasdiagnosed with MS in April 2010. As you can imagine, thisdiagnosischangedmylife.Thisyear,forthefirsttime,Iwillbeparticipatinginawalkbenefitingthose

of us living with MS. I feel very blessed that I am able to participate and help with the fundraiser this year.” To register, volunteer or donate – and for the most current information and event updates – visit www.walkMStexas.org.You’llalsofindplentyofusefulinformation including route maps, parking, photos, fundraising tools, lists of top fundraisers and top fundraising teams, walker spotlight stories and more. Dates,locationsandtimesforthe2011FallWalkMSseriesfollow.NotethatthewalkinKatyoffersa1-milelooproute,butallotherwalksoffer1-mileand5Krouteoptions.

Forquestionsorcommentsonthisarticle,contact MSConnection Editor James Black at [email protected].


ADVOCACY

ForMSActivists,SuccessisinSession at Texas LegislatureBy Mireya Zapata

At the National MS Society, we relentlessly advocate for federal, state and local government policies essential to people affected by MS, and we champion the rights of people with disabilities. FollowingisareportontheSociety’sadvocacyeffortsandsuccesses with the 2011 session of the Texas Legislature.


MS ACTiviSTS’PRioRiTY LEGiSLATioN

The Texas Budget (HB 1) The dominating issue of the session was the state’s budget and the $27 billion shortfall. The Texas Legislature ultimately decided to balance the budget by implementing deep budget cuts across state agencies,spending$4billionoutofthestate’sRainyDayFundforshortfallsinthecurrentbudget,andtheuse of state funds in “dedicated accounts,” or funds that are collected for a particular purpose but remain unspent. Many Texans living with MS will be impacted as the state’s Medicaid and Community Based Services waiverprogramsimplementutilizationreviews,caps, service limitations and provider reimbursement rate cuts. Also key to balancing the budget was the Legislature’s decision to leave an estimated $4.8 billion in Medicaid expected caseload growth unfunded until the beginning of the next legislative session in 2013. MS activists will need to remain vigilant to ensure that this emergency appropriation is made at the start of the next regular session.

Protecting Respite services Funding During the legislative session, MS activists came forward to share their personal stories in support of family caregiver legislation. Activist Gary Campbell testifiedasoneof2.7millionunpaid,informalfamilycaregivers in Texas who care for a loved one. MS activistssuccessfullyadvocatedforFamilyCaregiverRespitelegislation,creatingaprogramallowingmiddleincome families to receive vouchers to pay for help in caring for their loved ones at home. In addition, legislators included $1 million to begin funding the respite program in pilot communities. InFebruary,MSactivistKimCampbellprovidedpowerful testimony during a Senate budget hearing in support of Home and Community Based Services, and she highlighted the important role family caregivers have in allowing persons with chronic illness to remain intheirhomes.ThankstoKimandGary’spassionforadvocacy,Texas’LifespanRespiteCareProgram’s$1

• 100percentsuccessonourthreetop priority issues

• 12callstoaction,senttotheAction alert advocacy email network

• 419emailssenttolegislatorsby MS activists

• 15“WeeklyLegislativeUpdates”shared with action network

• 85in-personvisitstoTexaslegislators by MS activists

• SevenMSactiviststestifiedinlegislative hearings

• 50MSactivistsattendedthe2011 TexasPublicPolicyConference

Advocacy bythe Numbers

million appropriation was protected and remains intact. This legislative victory would be a huge feat during any session, but is particularly impressive duringadifficultbudgetcycle.

oPIC Amendments Withdrawn from HB 1 As the Texas House prepared to begin debate on House Bill 1, the appropriations bill, Society staff and MS activists were surprised to learn of two amendmentsauthoredbyStateRep.JasonIsaac(R-DrippingSprings)andStateRep.RaulTorres(R-CorpusChristi)thatproposeddefundingtheOfficeofPublicInsuranceCounsel(OPIC). During the last year, the Society and MS activists have worked with OPIC on issues that are important to people living with MS. The advocacy team quickly issued an Action Alert to MS activists living in these House districts regarding their legislators’ efforts to eliminate funding for OPIC and to share the detrimental effects this could have in our efforts to


make insurance affordable and available to Texans living with chronic illness. Rep.IsaacandRep.Torresultimatelywithdrewtheir amendments. We are pleased that OPIC is no longer under direct threat of elimination and we will maintain our support for the agency’s continuation.

Banning Discretionary Clauses (HB 3017) In December 2010, the Texas Department of Insurance issued a rule prohibiting the use of “discretionary clauses,” contract language that gave an insurance company the ability to unfairly deny benefits.ThisvictorywasaresultoftheleadershipandtenacitybyMSactivistsDeborahandDavidRankin,whobroughttheissuetotheattentionoftheOfficeofPublicInsuranceCounsel,astateofficethatrepresentsTexans on insurance matters at the department. Davidhadfirst-handexperiencewithdiscretionaryclauses,havingbeendeniedlong-termdisabilitybenefitsafterhisdiagnosisin2006.DeborahandDavid fought the insurance company in court and won, but they didn’t stop there. They were determined to make sure that no other family was impacted the

way theirs had been. The department’s decision to ban discretionary clauses in rule paved the way to legislation this session. ImpressedbytheRankin’sefforts,StateRep.JohnSmithee(R-Amarillo)filedHouseBill3017toputthebanondiscretionaryclausesinTexaslaw.TheRankinspartnered with the Society to engage MS activists in support of the legislation and to secure its passage, thereby protecting every Texas family from unfairly beingdeniedinsurancebenefits. TheRankin’sprovidedkeytestimonyintheHouseInsurance Committee hearing and issued a personal call to action to MS activists across Texas. In response, almost 200 MS activists emailed their representatives in support of the bill. David’s “Story Card,” that told of David’s experiences and his life with MS, also proved to be a powerful tool. During a Senate hearing, Senator LeticiaVandePutte(D-SanAntonio)noted,“ThisisaverycompellingstoryofDavidRankin.Iwouldurge[members] to read over it. It tells you exactly why this bill is needed.” House Bill 3017 was sponsored in the Senate by SenatorRobertDuncan(R-Lubbock),Chairmanof

Rep. Rick Hardcastle shared his personal story of living with MS and energized attendees at the 2011 Texas Public Policy Conference.


Rep. John Smithee, pictured with MS activists in his Capitol office, sponsored two MS priority bills this session, including legislation to guarantee prescription drug coverage during the contract year and to require notification of critical changes prior to re-enrollment.

the State Affairs Committee. It was signed into law byGov.RickPerryonJune17andbecameeffectiveimmediately.

Continuity of Prescription Drug Coverage (HB 1405) Accessing prescription drugs is a daily challenge formanyTexanswithMS.Thehighcostofco-pays,andincreasinglyco-insurance,areevenmoreinsurmountableduringdifficulteconomictimes.Itisessential that people with MS who have prescription drug coverage as part of their insurance policies be able to count on that coverage during the entire time of the contract period. Thissession,theSocietyworkedwithRep.JohnSmithee, Chairman of the House Insurance Committee, tofileHouseBill1405,legislationtoprohibitmid-yearincreasestoprescriptionco-paysandtoprovideadvancenoticeofformularychange.RepresentativesCraigEiland(D-Galveston),RickHardcastleandBarbaraNash(R-Arlington)joinedhimasJoint-Authors of the bill. As HB 1405 made its way through the legislative

process, the MS Action Network gave hundreds of Texans living with MS the opportunity to communicate to legislators their experiences with high cost,disease-modifyingandsymptommanagementdrugs.Theyexplainedhowunexpectedmid-yearincreasestoco-payscansometimesmakeitimpossibleto afford these critical medications. MS activist Tracy Brinton was among those who testifiedbeforetheHouseInsuranceCommitteeand asked representatives to help Texans living with a chronic illness to be able to budget for the cost of their medications by voting for HB 1405. Like many Texans with MS, Tracy works hard to stick to her family’s budget to make her monthly health insurance premiumsandprescriptiondrugco-insurance.Her testimony was a powerful tool in gaining the committee’s support for the bill and building momentum. As passed by the Texas Legislature, House Bill 1405 maintains prescription drug coverage for the entirelengthofanenrollee’scontractandrequires60-daynoticeofanychangespriortothere-enrollmentperiod. It was sponsored in the Senate by Senator Bob


Deuell(R-Greenville),Vice-ChairoftheStateAffairsCommittee, and signed into law by Gov. Perry on June 17, becoming effective Sept. 1.

Working in Partnership: other key Legislation The National MS Society has strong partnerships with many of Texas’ leading advocacy groups, including the Disability Policy Consortium, the Coalition of Texans with Disabilities, the Center for PublicPolicyPrioritiesandtheAARP.Together,wework to provide a voice for Texans living with chronic illness and disabilities in many policy areas, including healthinsurancereformandbetteraccesstolong-termcare services and supports. The Society will continue to support efforts regarding:

• Texas Health Care Connector (HB 636) During the session, the Society participated in the CoverTexasNowcoalition,agroupoforganizationsthat supported the creation of a health insurance

exchange in Texas. We worked together to make sure that any adopted legislation functioned with transparency so affordable health care would be easily accessible for all Texans, especially those living with disabilities.

MS activists Howard Adams and Tracy Brinton and South Central Executive Vice President Mark Neagli provided testimony before the House Insurance Committee in support of House Bill 636byRep.JohnZerwas.Thislegislationwouldhave created the Texas Health Care Connector, or state health insurance exchange. As envisioned by the Affordable Care Act, the exchange would allow individuals and small employers to shop for affordable health coverage. Health plans in the exchangewouldhavetoofferastatedsetofbenefitsand the exchange would give Texans information allowing them to easily compare price and coverage optionsbetweentheplans.Unfortunately,HB636did not pass.

The Society will closely monitor efforts currently underway at the Texas Department of Insurance to

David Rankin motivated hundreds of MS activists to join him in support of legislation to ban the use of “discretionary clauses” in Texas, contract language that gave an insurance company the ability to unfairly deny benefits.


implementastate-runhealthinsuranceexchange.Asoutlined in the Affordable Care Act, states have until 2014 to do so at which time the federal government will step in if individual states have failed to take action.TheSocietysupportsastate-runhealthinsurance exchange that allows Texans to shop for a health insurance policy that meets their needs and budgets.

• Create a Comprehensive Access Point for long-Term Care services (HB 329) Thissession,theAARPworkedwithStateRep.RyanGuillen(D-RioGrandeCity)tofileHouseBill 329, legislation that would have created one pilot site to test a comprehensive access point for long-termcareservices.Inthepilotarea,seniors

and people with disabilities would be screened to determine if they are likely to be eligible for assistance with community care services. The goal would then be to get community care services started quickly so that seniors and people with disabilitieswhoareinurgentneedoflong-termcarehave alternatives to more costly facility settings. The SocietysupportedtheAARP’seffortsthissessionand, although HB 329 did not pass, we will continue topartnerwiththeAARPinanyfutureattemptstopass similar legislation.

MireyaZapataistheRegionalDirectorforActivismandLongTermServicesintheSociety’[email protected].


New Orleans has elevated the party into an art form.

Even in a city as colorful as the Big Easy, though, one gala stands out as the artistic and social highlight of the season. CreativityreignswhentheLouisianaofficeoftheNational MS Society hosts the sixth annual Peoples HealthRenaissancePartyat7p.m.Friday,Dec.9,2011,attheRenaissanceArtsHotelinNewOrleans.Thegoodtimesrollwithaspirited,festiveeveningoffinefood,drinkandjazzyentertainment,witheye-catchingartwork and auction packages up for bids. But this isn’t simply art for art’s sake. This is a party with a purpose. Since2006,theRenaissancePartyhasraisedmorethan$650,000tosupportprogramsandservicesfor men, women and children affected by multiple sclerosis.Fundsraisedfromdonorsandcharitableattendees help paint a clearer picture of a world free of MS.

Thatworldisbroughttovividlifethroughdozensof paintings and sculptures created and donated for auction by the Crescent City’s most talented artists. There’ssomethingforeveryoneattheRenaissanceParty, however. At last year’s event, just a few of themanyotherarticlesupforauctionwereaprizepackageofa50-inchplasmaTV,Blu-raydiscplayerandHDsurroundsoundsystem;finejewelry;dinnerparties; a vacation to Steamboat Springs, Colo.; theater passes; Pilates classes; athletic club memberships; a “staycation”atNewOrleans’trendiestspots;round-tripplanetickets;winetastings;giftcertificates;memorabiliasignedbyNFLquarterbacksPeytonand Eli Manning; and football jerseys signed by quarterback Drew Brees with the hometown favorite SuperBowl-winningNewOrleansSaints. Obviously, things are done in a big way for this Big Easyevent,includingamouth-wateringround-upofNewOrleans’bestdishesanddesserts.Alivejazzbandwill be on stage to help guests dance the calories away.

New Orleans Prepares for Artistic RenaissanceThisNovemberby James Black


“This is our social event of the season and a large part of our success is thanks to the continued support of our presenting sponsor for this event, Peoples Health,”saidRebeccaPennington,VicePresidentoftheSociety’sLouisianaoffice.“Theirpartnershiphelpsenhancethehealthandwell-beingofeveryoneweserve. It’s a special way that Peoples Health and our guestsattheRenaissancePartyaregivingbackandsupporting our communities.” Sharing that frame of mind, volunteer members of theRenaissancePartyPlanningCommittee,workingwith the Society’s Louisiana staff, are putting their considerable talents to perfect use to make this year’s party unforgettable. “TheRenaissancePartyisascolorfulandasexciting as New Orleans itself,” Pennington said. “It’s

a celebration of the unique culture that makes us stand out and our shared passion that helps us stand together to help everyone affected by MS.” Formoreinformationortoreserveticketsforthe2011PeoplesHealthRenaissanceParty,visit the Society’s Louisiana website at www.nationalMSsociety.org/lam.

MSConnection Editor James Black encourages everyone to experience New Orleans’ great RenaissancePartyonDec.9.Forcommentsorquestions on this article, he can be reached at [email protected].


RESEARCH

Global Consortium Doubles theNumber of ms Risk Genes Identified In the largest MS genetics study ever undertaken, aglobalcollaborationofscientistshasidentified29 new genetic variants associated with MS, and confirmed23otherspreviouslyassociatedwiththedisease, verifying a major role for the immune system in the development of multiple sclerosis. The study involved nearly 10,000 people with MS and more than 17,000 controls without MS, and was funded by the Wellcome Trust, the National Institutes of Health, the NationalMSSocietyandmanyotherorganizations. Most of the genes implicated in the study were relatedtoimmunefunction;morethanone-thirdhavepreviouslybeenconfirmedtobeassociatedwithautoimmune diseases. In a second study, collaborators showed diseases believed to be autoimmune share many similar genetic variants. To date, the results of geneticsstudiesinMSdonotsignificantlyimprovetheability to provide genetic counseling to individuals. However,thefindingspromisetobetterdefinethebiological pathways leading to MS and enhance our ability to design better treatments for early MS.

medtronic Reports on PossibleBattery Issues in synchromed Pumps In July, Medtronic provided physicians with new information about possible reduced battery performance in a small percentage of the SynchroMed drug pumps used to deliver intrathecal baclofen, a

medication used to treat severe spasticity. A battery with reduced performance may need to be replaced sooner than expected. In addition, the reduced performancemaycausethedrugflowratetoberesetto a very low level. In the event of reduced battery performance,apersonwouldexperienceasignificantincrease in spasticity and perhaps some withdrawal symptoms as the supply of medication is decreased. Medtronic is not recommending pump replacement because the risk of this change in battery performance is very low and the surgery poses its own risks. The pump’s alarm system will sound if there is a problem. Formoreinformation,callMedtronicPatientServicestoll-freeat1-800-510-6735.

study in Taiwan Finds Increased Riskof Developing MS Following virus Attack Researchershavereportedthatpeoplewhoexperiencedanattackofherpeszoster–whichusuallymanifests as the skin rash known as shingles – were more than three times as likely to develop MS over the next year than individuals without such an attack. The findingscamefromauniquestudyusingalargedataset of Taiwanese people who are generally at lower risk for MS than those of European descent. This study warrantsconfirmationinotherethnicpopulations.Jiunn-HorngKang,MSc,M.D.;Herng-ChingLin,Ph.D.;andcolleaguesatTaipeiMedicalUniversityandHospitalreportedtheirfindingsintheJune2011Journal of Infectious Diseases.

ResearchRound-Up


Since initial exposure to numerous viruses, bacteria and other microbes occurs during childhood, andsincevirusesarewell-recognizedascausesofnervoussystemdamageandinflammation,itispossible that a virus or other infectious agent is the triggeringfactorinMS.Morethanadozenvirusesandbacteria – including measles, canine distemper, human herpesvirus-6andChlamydiapneumonia–havebeeninvestigated to determine if they are involved in the development of MS. Recently,varioustypesofevidencepointinparticular to an association between MS and the Epstein-Barrvirus,aherpesvirusknowntocauseinfectious mononucleosis and other disorders.

Company Decides Not to seek Approval for Cladribine In late June, Merck Serono announced that it had decided not to pursue approval of its oral therapy Cladribine for the treatment of relapsing forms of multiple sclerosis. According to a company press release,discussionswiththeU.S.FoodandDrugAdministration made it apparent that clinical trials of thetherapywouldnotaddresstheFDA’srequirementsfor approval. Details of these requirements have not been made public. In March, the company had received a letter from theFDAindicatingthatitsapplicationforapprovalwas not ready in its current form and outlining requirements for additional information. The company has stated that it plans to complete the current clinical trials and patient registry that are underway, and that results will be published.

society-Funded Research FindsPossible Regulator of Myelin Repair Researchersreportedthissummerthatamolecule– called Axin2 – may be essential to regulating the repairofnervefiber-insulatingmyelin,andmaybeagood target for future therapies aimed at regenerating myelin that has been damaged by the MS disease process. Myelin is the substance that nourishes and insulatesnervefibersandisdamagedinMS.StephenFancy,DVM,Ph.D.;DavidRowitch,M.D.,Ph.D.;andcolleaguesattheUniversityofCalifornia-

SanFranciscoreportedonastudyco-fundedbytheNational MS Society’s Promise: 2010 initiative, the MS SocietyoftheUnitedKingdomandNorthernIreland,and other funders. This study furthers the Society’s goal of restoring function that has been lost to people with MS by identifying a possible target for nervous system repair strategies.

Team Pinpoints Gene-environmentInteraction in Cells from Persons with ms Studying human cells isolated in the laboratory, researchers have revealed a novel interaction between twogenesthatinfluencesusceptibilitytodevelopingMS, certain environmental factors, and a chemical processcalledN-glycosylationthatmodifiesthestructure of molecules. Together, this may contribute to our understanding of how complex interactions lead to the development of MS. Michael Demetriou, M.D.,Ph.D.,withtheUniversityofCalifornia–IrvineandcolleaguespublishedtheirfindingsintheMay31,2011 edition of Nature Communications. The team was funded in part by the National MS Society. Dr. Demetriou’s team examined DNA samples from about 13,000 people with MS or controls. The team looked at how four previously reported susceptibility genes that are involved in immune systemactivities–interleukin-7receptor-alpha,interleukin-2receptor-alpha,MGAT1andCTLA-4–affectN-glycosylation.Researchersthenexaminedhow a particular environmental factor such as vitamin D affected this interaction. ResultssuggestthatthesegenesdoalterN-glycosylationincellsisolatedinthelaboratory,but that both vitamin D and a dietary supplement calledN-acetylglucosaminewereabletosuppressthisprocess in cells and in mouse models of MS. This study provides new evidence for a link between genes and the environment in the development of MS; additional research is needed, however, before it is possible to generalizethesefindingstoallcasesofMS.

Bone Health is a Concern in Early MS Researchersreportedthatlowbonemasswasmore prevalent among people newly diagnosed with MS, or those with clinically isolated syndrome (CIS,


afirstepisodeofMS-likesymptoms),thanamongcontrols without MS. The risk of bone loss had been known for people with MS, but this study showed that it can occur very early, even before MS has been diagnosed. Stine Marit Moen, M.D., and colleagues at OsloUniversityHospitalreportedtheirfindingsin July. The team measured bone density in several areas and the total body in 99 people newly diagnosed with MS, or those with CIS, compared to 159 controls without MS. They also administered a questionnaire concerning risk factors for osteoporosis, a disease that causes bones to thin. More than half of the people with MS or CIS had low bone mass, compared with 37.1 percent of controls, and low bone mass remained significantlylowerinthespineandhipevenafteradjusting for other possible risk factors. The authors concluded that this study “calls for an active approach tooptimizebonehealthinearlystagesofMS.”

Positive Results Announced from FirstPhase III study of Alemtuzumab in ms SanofianditssubsidiaryGenzymeannouncedthattheexperimentalintravenoustherapyalemtuzumab(withaproposedbrandnameLemtrada)metoneoftwoprimaryendpointsbysignificantlyreducingrelapseratesinatwo-yearstudycomparingtwoannualcyclesofalemtuzumabagainststandardsubcutaneousdosingofRebif.Thestudy,calledCARE-MSI,involved581peoplewithearlyrelapsing-remitting MS. The study did not meet its second primary endpoint of slowing disease progression comparedtoRebif.Dataanalysisisongoingandthe company expects to provide a full report at an upcoming medical meeting. Another trial of alemtuzumab,calledCARE-MS-II,iscurrentlyunderway.

study Investigates Cost effectivenessof Therapies to Treat MS Astudyco-fundedbytheNationalMSSociety,theNationalInstitutesofHealthandtheUniversityofRochesterexaminedthecost-effectivenessoftherapiestotreatMS.ResultswerereleasedinJuly2011,findingthat the cost for improving the quality of life for people

withMSintheUnitedStatesishigh.Thestudyinno way suggested that anyone appropriate for these treatments should not be on them; in fact, it found that theearlierdisease-modifyingtherapieswereused,themorecost-effectivetheywere.Thisaddstogrowingevidence suggesting that treating MS early and consistently is the best way to ward off future disease activity.

Initial Results Released fromPhase III study of laquinimod Teva Pharmaceutical Industries Ltd. and Active Biotech announced in August that the phase III BRAVOstudy–inwhichtheexperimentaloraldruglaquinimod was tested against inactive placebo in a study involving more than 1,300 people with relapsing-remittingMS–didnotreachitsprimarygoalof reducing the average number of relapses in a year. However, when the investigators adjusted the data to correct for differences in magnetic resonance imaging characteristicsatthestartofthestudy,asignificantreduction in average annual relapse rate was observed inthegroupreceivinglaquinimod.Furtheranalysisisongoing. The companies plan to submit applications to regulatory authorities for the treatment of MS in the UnitedStatesandEuropeanUnion.

Phase II Trial of Daclizumab ReducesAverage Annual Relapse Rate Biogen Idec and Abbott Pharmaceuticals announced in an Aug. 10, 2011 press release that DAC HYP – a liquid formulation of the monoclonal antibodydaclizumabdeliveredviamonthlyinjectionunder the skin – reduced the average annual relapse ratesignificantlyinastudyof600peoplewithrelapsing-remittingMSoveraone-yeartrial.Fulldatafrom the “SELECT Study” are to be presented at an upcoming medical meeting.


Whether the symptoms that brought you to the doctor are relatively new or you have been

searching for answers for some time, the words “multiple sclerosis” can be very frightening. The National MS Society offers resources to boost your knowledge.

MS Next Step MSNextStepisdesignedtoanswercommonly-asked questions immediately following a diagnosis. If you are just beginning your search for information about MS; wondering how the diagnosis may affect you; or considering issues like disclosure, treatment strategies and working with your health care team, MS Next Step is for you.

MS Next Step includes:• AprintedbooklettointroduceyoutoMS, common concerns and helpful resources• ADVDincludinginterviewswithpeoplewho have learned to live well with MS and who provide perspectives relevant to those newly diagnosed• Electronicfilesofthebookletcontentandvideo transcripts, all included on the DVD• Spanishtranslationsofthebookletandtranscripts on the DVD; Spanish subtitles are available on the video content.

If you are newly diagnosed and would like to receive a copy of MS Next Step, contact the National

MSSocietybycalling1-800-344-4867(press1whenasked).

Knowledge is Power ForindividualswhohavealreadydevelopedabasicknowledgeofMS,KnowledgeisPowerisanideal way to add to your knowledge and learn how to live better with multiple sclerosis. KnowledgeisPowerisafree,at-homeeducationalseries for people newly diagnosed and their families. ItiswrittenbyDr.RosalindKalb,ahighly-regardedauthor and psychologist who knows about the effects of MS on your life and the lives of those who care about you. Theprogramprovidesup-to-datefactsaboutmany aspects of MS. It also offers information on dealing with one of the greatest challenges presented by MS – the unpredictability and uncertainty of the future. Intheconvenienceofyourhome,Knowledgeis Power gives you new topics each week, including dealingwithyourdiagnosisanddisclosure,disease-modifyingtreatments,maximizingemploymentoptions, working with your doctor and more. YoucanhaveKnowledgeisPowerdeliveredtoyour email or postal address at no cost to you. Contact theSocietyat1-800-344-4867(press1)andspecifyemailorpostalmailfordelivery.KnowledgeisPowerisavailable in Spanish upon request.

ResourcesHelp You Take the Next Step

RESEARCH


RESEARCH

The process of building consensus on the medical management of pediatric MS and similar disorders

has begun, thanks to a systematic survey conducted by the Network of Pediatric MS Centers of Excellence established by the National MS Society. Amy T. Waldman, M.D., and colleagues at Children’sHospitalofPhiladelphiaidentifiedandagreedonspecifictreatmentapproaches,andalsoidentifiedareasforfurtherresearch.TheSocietyissupporting a data coordination and analysis center so important research on pediatric MS can continue. Although MS occurs most commonly in adults, it is also diagnosed in children and adolescents. Estimates suggestthat8,000–10,000children–definedasthoseupto18yearsold–intheUnitedStateshavemultiplesclerosis. Another 10,000 – 15,000 have experienced at least one symptom suggestive of MS. Because of the critical need to better understand pediatric MS, the Society established a network of Pediatric MS Centers of Excellence. Each of the six centers offers comprehensive services through multidisciplinary teams, including pediatric and adult MS experts. The centers are working together to improve evaluation and management strategies to enhance diagnosis and care of children with MS and other related disorders; develop resources for families, health care professionals and the public; and collect data that will enable large scale research initiatives. Forthisstudy,theauthorsinvited67physiciansassociatedwiththenetwork(orothersidentifiedfortheirexpertiseinMSandsimilardiseases)toparticipate; 42 accepted. They sent out a series of questionnaires that were answered anonymously and thenanalyzed.Technicalsupportforthiseffortwasprovided by the Society. Consensus–definedasagreementbymorethan75 percent of the respondents – was reached on several items, including:

•Initialevaluationofachildorteenagershouldinvolvemagneticresonanceimaging(MRI)scansofthe brain and several blood tests, including complete blood count, erythrocyte sedimentation rate and basic metabolic panel.•Acuteattacksofthebrainorspinalcorddonotalways require treatment; the decision depends on the symptoms of the attack, the severity and the timing relative to the medical evaluation, among other factors.•Intravenousmethylprednisoloneisthefirst-linetreatment of choice for acute attacks of MS in children, and similar disorders such as neuromyelitis optica.•Respondentswouldstoporchangedisease-modifying therapy if relapses increase or if side effects occur that interfere with daily activities. Forsomeitems,amajorityopinionwasformed(50to75percentofrespondents).Forexample,amajoritysupportedtheuseofdisease-modifyingtherapies in children diagnosed with MS or considered at high risk for the disease. Otherareaswerenotagreedupon,reflectinganeed for further research. There was lack of agreement ontheoptimalchoiceofsecond-linetreatmentsforacuteattacksandonthefrequencyofMRIscanswhenmonitoring pediatric patients with MS and similar disorders. Also, consensus was not reached on whether tousedisease-modifyingtherapiesinchildrenyoungerthan the age of 5. The initial grants to the Pediatric Network Centers of Excellence have been extended for an additional year to continue funding the comprehensive care centers. There is also funding for the next two years to support a data coordination and analysis center so the network can continue to collect data, and to study pediatric MS and related disorders. Additionally, the network is planning to expand its collaborationtoincludeothersitesaroundtheUnitedStates that are interested in gathering data on these diseases.

Neurologists Begin to Build Consensuson Managing Pediatric MS


T he core purpose of the Consortium of MS Centers (CMSC)istomaximizetheabilityofMShealth

care professionals to impact care of people who are affected by multiple sclerosis, thus improving their quality of life. The CMSC held its 25th annual meeting in Montreal this summer, featuring more than 200 reports on research to improve care and quality of life of people with MS. Here is a small sample of these reports:

Exercise boosts cognitive function Cognitive changes are common in people with MS.BrianSandroffandcolleaguesattheUniversityofIllinois-Urbanaenrolled42peoplewithMSwhoworeaccelerometers for seven days and were administered tests of cognitive function. More physical activity was associated with faster information processing speeds, independent of a person’s disability status. In a similar effort, the National MS Society is currently funding a trial comparing the ability of aerobic exercise versus a stretching program to improve cognitive performance.

Is fatigue an ms predictor? FatigueisoneofthemostcommonsymptomsofMS and may be the most prominent symptom in a person who otherwise has minimal activity limitations. JosephBerger,M.D.,andcolleaguesattheUniversityofKentuckyinLexingtonlookedatthefrequencywithwhich fatigue heralds the onset of MS. Among 5,305 people with MS, 29 percent reported fatigue in the three years before MS diagnosis. In 30 percent of these patients, fatigue was the only symptom preceding MSdiagnosis.FatigueprecededMSdiagnosisbyan average of 501 days. The authors advise that, in people experiencing unexplained fatigue, a detailed neurologic history and exam should be conducted to rule out MS.

Nintendo Wii helps improve functional balance BalancecanbedifficulttomaintainforpeoplewithMS.ErinKorsbrek,MSc,andcolleaguesattheUniversityofCalgaryenrolled18peoplewithMSinastudyusingtheNintendoWiiFitPlusgaming

NewCMSCReportsFocuson Quality of Life Issues FromNationalMSSocietyreports

In August, the National MS Society introduced a resource

for families with a child or teen with MS. The “Managing School-RelatedIssues:AGuidefor Parents Living with a Child or Teen with MS” handbook provides parents with the tools and resources to be their child’s best advocate in the school system. It includes a discussion on the potential impact of MS in

the school setting, recommended accommodations and modifications,transitionissues,and sample plans and requests for academic accommodations. The handbook is a collaborative project of the Network of Pediatric MS Centers of Excellence, led by the team attheRegionalPediatricMSCenteratUniversityofCalifornia–SanFrancisco.Itisavailable

on the Society’s website at nationalMSsociety.org, then click through About MS>Who Gets MS>Pediatric MS>Pediatric MS Support Group. Printed copies are available bycallingtheSocietyat1-800-344-4867(press1).Thereisnocharge for this new pediatric MS resource.

New Pediatric MS Handbook Provides Parents with Tools for School

RESEARCH


systemthreetimesperweekforsixweeks.Functionalbalance improved, and measures of fatigue and other symptoms remained stable, indicating no adverse effects. Coauthor Maureen Dunn, Ph.D., with Hope College in Holland, Mich. is currently funded by the NationalMSSocietytoconducta12-weektrialto determine whether Wii is an effective balance rehabilitation tool for people with MS.

lsu-shreveport team finds negativepreclinical results in resveratol Researchhassuggestedthatresveratrol,acomponent of red wine, enhances the activity of a molecule(SIRT1)thatmighthelptopreservenervefibers.IthasbeenshowninseveralstudiestodecreasetheseverityoftheMS-likediseaseEAEinmice.FumitakaSoto,Ph.D.,atLouisianaStateUniversityinShreveport and colleagues reported that resveratrol actually worsened EAE in mice, causing severe damage.Furtherresearchwillbeneededtosortoutthis issue.

evaluating relationship education “RelationshipMatters:AProgramforCouplesLiving with MS” was developed by the National MS Society to help couples affected by MS to strengthen theirpartnershipsandminimizetheimpactofMS on their lives. Couples receive eight hours of programmingviateleclassesorin-personworkshops.KimberlyKoch,MPA,withtheNationalMSSocietyand colleagues looked at a sample of more than 1,000participants.Theyfoundsignificantincreasesin relationship satisfaction, along with clinically significantimprovementinmentalhealth.FundingforthisprojectwasprovidedbytheU.S.Departmentof Health and Human Services, Administration for ChildrenandFamilies.

Risk tolerance for MS therapies Recently,severalmoreeffective,butmorerisky,therapies have become available to treat MS, and moreareunderdevelopment.SocietygranteeRobertFox,M.D.,andcolleaguesattheClevelandClinicFoundationadministeredaweb-basedquestionnaireon risk tolerance to more than 10,000 people enrolled intheNorthAmericanResearchCommitteeon

MS(NARCOMS)registry.Atotalof5,446peoplecompletedthequestionnaire.Resultsshowedthatthree factors were associated with increased tolerance for risky therapies: increased disability, male gender and not currently being on an MS treatment. These results can help to guide discussions between clinicians and people with MS.

Psychosocial factors related to smoking Researchsuggestssmokingmayincreasetheriskof developing MS and may speed disease progression. JosephOstroffandcolleaguesatStateUniversityof New York in Buffalo examined factors that distinguished smokers from nonsmokers in a sample of1,300peoplewithMS.Smokersweresignificantlymore likely to be single or divorced, and to experience higher levels of pain, fatigue, tension and loneliness.

educating physical therapy students about ms AngelaRosenberg,PT,DrPH,andcolleaguesattheUniversityofNorthCarolina-ChapelHill,alongwithKayeGoochoftheSociety’sEasternNorthCarolina Chapter, presented a program developed by the university and the Society to educate physical therapists in the management of the neurologic and psychosocial needs of people with MS. Evaluations oftheprogramindicatedincreasesinMS-specificknowledge.Theteamhopesthistwo-yearprogramwill serve as a model for other universities.

Breathing problems during sleep Sleep-disorderedbreathingisaproblemofrespiration that occurs during sleep, such as sleep apnea. Tiffany Braley, M.D., a Sylvia Lawry Physician FellowoftheNationalMSSociety,exploredtheoccurrence of these disorders in 48 people with MS and 84 controls without MS. The results suggested that people with MS and disease activity in the brainstem (the lower extension of the brain where it connects tothespinalcord)hadapredispositionforsleep-disordered breathing. People with these disorders reported fatigue, lack of energy or tiredness to be their most problematic symptom, as opposed to excessive daytime sleepiness.


RESEARCH

This summer, the National MS Society presented its annual listing of Clinical Trials in MS, featuring

ongoing MS trials, as well as those that are being planned or that have been recently completed. The 2011 list of 130 studies indicates an exciting time in MS research, with therapies progressing through the drug development pipeline.

Highlights of the 2011 listing include:•Morethan20phaseIIIstudiesareongoing;thesearethetrialsthatprovidedatapresentedtotheU.S.FoodandDrugAdministrationwhensponsorsfilefordrugapproval.•Anincreasingnumberofnovelagentsarebeingtested for neuroprotective capabilities, including antioxidants, green tea extracts, a drug used for pain relief and the epilepsy drug phenytoin; two of these trials are funded by the National MS Society.•Ninetrialsareexaminingwhetherrehabilitationinterventions(e.g.,cycling)canimprovesymptomsincluding depression, mobility, spasticity and cognitive function. By comparison, there were only two of these trials on the list in 2005.•MovingMSclinicalresearchforwardisnotpossiblewithout people with MS; more than 52,000 people with all types of multiple sclerosis and those at high risk for MS participated, or are currently participating, in these studies.

The current listing of Clinical Trials in MS is available on the Society’s website at www.nationalMSsociety.org.ClickontheResearchtabnear the top of the page, then the Clinical Trials link in theleft-handnavigationbaroftheResearchWebpage.

understanding the Role and Process of Clinical Trials Clinical trials help to determine if a drug is safe and effective for people living with the daily challenges of multiple sclerosis. People with MS who are willing to volunteer in these studies make it possible for

everyone to look forward to new and better therapies.Many factors are involved in making sure a study is conductedproperlyandthatresultsarevalid.TheU.S.FoodandDrugAdministrationrequirestherapiestoundergo three phases of clinical trials before they can be approved to treat people with MS:

• Phase I–Thefirststepistodeterminesafety.Inasmall number of healthy volunteers or persons with MS, the investigators determine how the human body reacts to the therapy.

• Phase II – If the therapy proves to be safe, studies begin to determine the effectiveness of the drug in people with MS. These studies may last several months or several years, and involve larger numbers of people. The study is “controlled” – that is, the drug is compared with the standard treatment or an inactive placebo.

• Phase III – If an MS drug shows effectiveness, an even larger study is conducted in hundreds of people to gain a better understanding of the drug’s effectivenessandpossiblesideeffects.Thesemulti-center studies can span several years and several countries.

FollowingFDAapproval,post-marketingstudies(phaseIV)mightbeconductedtoassesslong-termsafety and effectiveness.

Participate in Local Clinical Trials The Society provides a database of trials currently recruiting people with MS. It is available at www.nationalMSsociety.org/trialsrecruiting and can be searched by state, type of MS and keyword. Within theSouthCentralUnitedStates,forexample,arecentsearch by state found 13 recruiting clinical trials in Texas,fiveeachinArkansasandOklahoma,sixinLouisiana and eight in New Mexico. The database also includes a list of international studies.

130 Studies Presented in AnnualUpdateofClinicalTrialsSocietyProvidesOnlineResourceforLocatingLocalStudies


ResearchTeamsReportFirstYear’s Progress from Initial Studies of CCSVI

Thefirst-yearprogressreportsfromsevenmulti-disciplinary teams investigating CCSVI (chronic

cerebrospinalvenousinsufficiency)inMSindicatethat they are on track to provide essential data and criticalanalysisasthesetwo-yearprojectsmovetoward completion. These studies were launched in July 2010 with a more than $2.4 million commitment from the MS Society of Canada and the National MS Society. The research teams have already recruited a broad spectrum of people with multiple sclerosis and others to build understanding of who may be affected by CCSVI.Inaddition,theyarerefiningCCSVIimagingmethods for accuracy and consistency to reliably validate the occurrence of CCSVI and understand its implications in the MS disease process. These seven teams were chosen by an international panel of experts that included specialists drawn from all key relevant disciplines including radiology, vascular surgery and neurology. The projects were selected for having the greatest potential to quickly and comprehensively determine thesignificanceofCCSVIintheMSdiseaseprocess.All have received approval for their studies from the requiredInstitutionalReviewBoardsintheUnitedStatesortheResearchEthicsBoardinCanada,afirststep established by regulatory authorities to protect human subjects involved in research projects. More

than486peoplehavealreadyundergonescanningwith various imaging technologies being used by the studies, including the Doppler ultrasound technology originally used by Dr. Paolo Zamboni and his collaborators, as well as magnetic resonance studies of theveins(MRvenography),cathetervenography,MRIscans of the brain and clinical measures. Because the studies employ rigorous controls designed to collect objective and comprehensive data, the full results of the ongoing research will be available after completion of the studies, which will involve more than 1,300 people representing a spectrum of MS types, severities and durations, as well as individuals with other disease types and healthy controls. In the meantime, several teams are planning to present preliminary results at medical meetings later this year. “We are pleased that this important work investigating the link between CCSVI and MS is advancingquickly,”saidDr.TimCoetzee,ChiefResearchOfficerattheNationalMSSociety.“Resultsfrom these comprehensive studies will help inform important next steps.” The funded investigators reported progress in establishingstandardizedprotocols,recruitingandscanning participants, and in the development of plansforsharingtheirfindings:

RESEARCH

FromNationalMSSocietyreports


Dr. Brenda Banwell, The Hospital for sick Children, Toronto, ontario: To determine whether signs of impaired vein drainage might be present early in the MS disease course, Dr. Banwell’s team received approval from the ResearchEthicsBoardandbeganenrollingchildrenand teenagers who have MS, and healthy controls of the same age. They are seeking venous abnormalities usingnon-invasiveMRImeasuresofveinanatomyandnovelmeasuresofvenousflow,aswellasultrasound.UnlikeadultswithMS,childrenareunlikelytohaveage-relatedchangesinbloodvessels,andarelesslikelyto have adult health conditions such as high blood pressure or heart disease, which might otherwise complicatefindings. The researchers’ ultrasound team received training in Dr. Zamboni’s original techniques from the Buffalo Neuroimaging Analysis Center; the team has created ultrasound and brain imaging procedures suited to explore venous drainage in children. Dr. Banwell’s team reports that recruitment is going well and plans toanalyzefindingsonlyafterall90participantshaveundergone the testing.

Dr. Fiona Costello, Hotchkiss Brain institute, university of Calgary, Calgary, Alberta: OnceitreceivedResearchEthicsBoardapproval,Dr.Costello’steambeganrecruitingacross-sectionofpeople with MS who would be compared with those affected by other neurological diseases or healthy volunteers. They have three dedicated ultrasound technologists who have been trained to do scanning as originallydonebyDr.Zamboniandtheyhaverefinedtheir scanning protocol. The team is planning to repeat scans on a subset of participants who had been scanned before they made method changes, which will allow them to compare the sensitivity of results pre-andpost-training. Dr.Costello’steamslowedrecruitmentbrieflytoupgradetoanew3Tesla(3T)MRIscanner,twiceasstrongasstandardclinicalMRI,andtheyhaveexpandedtheirMRIteamtoincludetwoadditional,experienced members. The 3T machine went online inMarch2011andisnowbeingusedtoperformMR

venography scans to compare against the ultrasound tests.

Dr. Aaron Field, university of Wisconsin school of medicine and Public Health, madison: His team is actively recruiting participants to undergoMRvenographyandultrasoundtechniquesto investigate CCSVI in people with early and later stages of MS, controls with other conditions and healthy volunteers, now that they have received approvalofthestudyfromtheInstitutionalReviewBoard(IRB).TheteamhasrefineditsMRvenographyprotocoltoaccountforvariationsinbloodflowthatoccur with breathing and heartbeats. They have determined that they will use a relatively new contrast agentordyethatwillpermithigh-qualityimagesof the veins in the head and neck and for measuring bloodflowinthebrain.ThiswillenabletheentireMRI/MRVexamtobecompletedwithonetime-saving injection instead of two. Theyhavealsostandardizedlocationsalongthelengthofveinswheretheytakebloodflowmeasurements because they have found large differencesinbothanatomyandsizeofheadandneckveins.

Dr. Robert Fox, Cleveland Clinic Foundation, Cleveland: AfterhisteamreceivedIRBapprovalforusingMRvenography,ultrasound,MRIandclinicalmeasuresinpeoplewithMSorwhoareatriskforMS(CIS)and comparison groups, they began recruiting and scanning participants. The ultrasound team found several aspects of the published methodology ambiguous;theteamhasstandardizedprotocolandanalysis to achieve consistent results. They shared their solutions to these methodological challenges in a poster presented at the American Academy of Neurology’s annual meeting in April 2011. The poster outlined physiological and technical factors that can complicate screening for vein blockages using ultrasound, including that heartbeat irregularities, stages of breathing, head


position and pressure applied by the operator could alter results; and that the state of hydration of the subject (whether the subject drank adequate amounts offluids)couldimpactresultsofseveralofthecriteriaused to determine CCSVI. They concluded that these complications may help explain the mixed results reported thus far related to CCSVI and MS. They have added to their aims a study designed to evaluate the impact of hydration on CCSVI assessments.

Dr. Carlos Torres, The ottawa Hospital,university of ottawa, ontario: HisteamobtainedResearchEthicsBoardapprovalafter negotiating details over elements of the informed consent form used to explain the study’s procedures and potential outcomes to participants. The team has beenconductingthefirstphaseofscanning,usingMRIandMRvenography,inpeoplewithoutMS,whichwillbe used to compare with various scans in people with MS.Dr.Torresexpectedtofinalizephaseoneofthestudy by the end of the summer and then will move on to phase two, which involves people with MS and other controls.

Dr. Anthony Traboulsee, uBC Hospital MS ClinicuBC Faculty of medicine and Dr. katherine knox, Saskatoon MS Clinic, university of Saskatchewan: AfterbothsitesreceivedResearchEthicsBoardapproval, they began to recruit and have scanned asignificantnumberofparticipants.TheyarealsousingcathetervenographyandMRvenographytoinvestigate the prevalence of CCSVI in people with MS and controls without MS. After the radiologists at bothsitesmetinFebruary2011toensureconsistencyof their protocols, they did a second wave of recruitmentandhopetofinishalltestingbeforetheend of 2011.

Dr. Jerry Wolinsky, university of Texas Health Science Center at Houston: AfterreceivingIRBapproval,Dr.Wolinsky’steam began recruiting participants. Their neurosonographer received intensive training for intracranial and extracranial ultrasound scanning techniques.Theteamhasalreadyscannedasignificantnumber of participants, which include people with different types of MS, people with other conditions and people with no known health problems. The team istestingwhetherotherimagingmethodscanconfirmtheultrasoundfindings,whileidentifyingthemostreliable technique to screen for CCSVI. Dr. Wolinsky’s team continues to encounter difficultyinrecruitingnon-MScontrolsubjectswhodon’t have a personal interest in the purpose of the trial. The executive committee that oversees this study has agreed with the team’s plan to continue aggressively recruit other controls, while at the same time increasing the number of MS participants. In some cases, they also found that some participants who were contacted to go into the next phase of scanning informed the investigators that they had gotten the venoplasty procedure, which made them ineligible to continue in the study.

moving Forward Atthisone-yearmilepost,investigatorsaremakingsignificantprogressontheiroveralltwo-yearstudy goals. The teams are making plans for sharing preliminary results at upcoming medical meetings. They have demonstrated a clear willingness to share technical advice so the projects can move forward as smoothly and as quickly as possible. Their results will help guide the development of a phase I/II clinical trial recentlyannouncedbytheCanadianFederalMinisterof Health to test whether treating vein blockages may be safe and effective in treating people with MS. The next update on the work of the seven grantees will be reported in six months.


Relationships are the vital cornerstone with which theNationalMSSocietyoperatesandfinds

success. This includes the volunteers who spend countless hours supporting daily and event operations, doctors, researchers and client service practitioners who are working toward a cure, event participants who raise money and MS awareness, and the businesses and corporations which donate money, goodsandservicestominimizeeventcostswhilebeingresponsibly committed to the community. Many of the Society’s Walk MS and Bike MS events offer a fun and exciting environment to enhance the experience for fundraisers. A festive and lively atmosphere at the events helps motivate walkers and cyclists to participate and encourages them to reach their fundraising goals. To provide a fun and festive experience, the Society depends on relationships with corporate partners to assist with reducing event costs. The business of many of these sponsorslendsthemselvestohelpwithspecificgoodsand services. Such examples include trucks to move equipment, printing for signs and banners, water to hydrate participants or food to feed them. Providing food is one of the costliest expenses needed to support Society events throughout the year. TwoHouston-basedbusinesses–LupeTortillaandMyFitFoods–havefedalotoftheSociety’sconstituentsover the past few years. In the last event season alone,

these two food providers combined have served more than 4,500 meals to persons with MS, volunteers and fundraisers at meetings and events. To offer an idea of this cost savings, if each meal is around $15 per serving,thistotalsmorethan$65,000ayear. Judson Holt, CEO of Lupe Tortilla Mexican Restaurant,believesingivingbacktothecommunity.“Community involvement is very important to Lupe Tortilla and we applaud all individuals who give to those in their area,” said Holt. It is because of this

dedication to the National MS Society that their support has grownwiththeorganization.As they have expanded their retail locations to Austin, Dallas and San Antonio, likewise their generosity has grown to support the Walk and Bike MS events in these cities. It is due to the wonderful relationship that has cultivated and grown over time that allows thispartnershiptoflourish.

As the National MS Society continues to provide events that raise vital funds for research and programs, businesseslikeLupeTortillaandMyFitFoodsprovidesupport to alleviate expensive event costs that result in more fundraising available to focus on the mission.

Calvin Pollard II manages corporate partnerships with the National MS Society. Based in the Society’s Houstonoffice,[email protected].

BusinessRelationshipsProvideFoodforThought

by Calvin Pollard II

LupeTortillaandMyFitFoodsGiveBackwith Mission to Serve MS Community


RegistrationOpensforSpring 2012 Bike MSRegistration opens this October for two 2012 Bike

MSfundraisingevents:theHouston-to-AustinBPMS150andtheFrisco-to-FortWorthBikeMS:Sam’sClub rides. Combined,morethan16,000registeredcyclistsand 4,000 volunteers take part in the two annual spring treks through Texas. The BP MS 150 and the Bike MS: Sam’s Club events raise funds for MS research and services.

At press time, 2012 BP MS 150 priority registration is set to open Oct. 5, with general BP MS 150 registrationbeginningOct.12.Registrationforthe2012 Bike MS: Sam’s Club is scheduled to open Oct. 25.Toconfirmregistrationdates–andtosignuptoride, volunteer or donate – visit bikeMStexas.org. TheBPMS150rollsoutApril21-22,2012.TheBikeMS:Sam’sClubisMay5-6,2012.


National Multiple Sclerosis SocietyLone Star Chapter8111 North Stadium Drive, Suite 100Houston, Texas 77054

Documents

Fall 2011 MSConnection: Lone Star