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Fall 2011 MSConnection: Lone Star
Fall 2011 edition of MSConnection: Lone Star, a local quarterly magazine produced by the National MS Society for persons in Texas affected by multiple sclerosis
Moving Toward a world Free oF MS Fall 2011 MS Activists Score Big Wins in 2011 Session Also in this issue: National Conference Set for Big D Step-by-Step Journey of 100 Miles Texans Rally for Walk MS Partying with Purpose in the Big Easy if You or Someone You 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. The official magazine of the National Multiple Sclerosis Society: Lone Star Amarillo � Austin � Dallas � Fort Worth � Houston � Lubbock � Midland � San Antonio The Official Magazine of the National Multiple Sclerosis Society: Lone Star 1-800-344-4867 Board of Trustees Chairman BRAD RoBBiNS Secretary ERNEST JoHNSoN Treasurer GERALD MERFiSH Regional Executive Vice President MARk NEAGLi MSConnection Editor JAMES 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. MS SToPS PeoPle FroM Moving we eXiST To MaKe SUre iT doeSn'T. Join THe MoveMenT Fall 2011 Volume 5 � Issue 4 The Official Magazine of the National Multiple Sclerosis Society: Lone Star Nominees for Board of Trustees Now Being Accepted 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. Nomineeswillbenotifiedofboard member expectations, responsibilities, fiduciaryandtimecommitments.Final candidates 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 Neagli National MS Society 8111 N. Stadium Drive, Ste. 100 Houston, TX 77054 Dallas is on the Move Nov. 11 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,thisprogramhastouchedthelivesofmore than 2,000 people across Texas and raised nearly $350,000.Forinformation,contactShelleyKaiserin theSociety'sNorthTexasofficeat469-619-4704or firstname.lastname@example.com. withtheSocietyofficenearyou,goonlinetovisit JointheMovementLoneStar.org.Fromthehome page,clickAboutUsintheleft-handnavigationbar, followed by the Career Opportunities link. offices Closed for upcoming Holidays Societyofficeswillbeclosed forThanksgivingNov.2325, 2011. In observance of year-endholidays,Society officeswillbeclosed from Dec. 22, 2011 to Jan. 2, 2012. We will reopen in the New Year on Tuesday, Jan. 3, 2012. Plug into Local Careers with the National MS Society The National MS Society is interested in professionals who share our vision of a world freeofMS.InTexas,theSocietyhasofficesin Amarillo,Austin,Dallas,FortWorth,Houston, Lubbock, Midland and San Antonio. Additional officesintheSouthCentralUnitedStatesare locatedinAlbuquerque,N.M.;LittleRock,Ark.; New Orleans, La.; and Oklahoma City and Tulsa, Okla. To search current career opportunities MoviNG ToWARD A WoRLD FREE oF MS 3 Volunteers Answer the Call to Help Their Communities by James Black 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%).Utahisthetopstatein the nation with a volunteerism rate of 44.5%. 4 MSConnection � FALL 2011 National Results Morethan62millionAmericansonaverage volunteered 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�havemore than doubled their volunteer rate since 1989. In 1989, 12.3%ofthisgroupvolunteeredwithanorganization; by 2010, the rate had increased to nearly 30%. AcrosstheUnitedStates,volunteersarehelping organizations�particularlynonprofitagenciessuch as the National MS Society � serve the country's mostvulnerablecitizens.Asnonprofitorganizations continue 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%),followedbycollectingor distributingfood(23.5%)andgenerallabor(20.3%). On a national level, people volunteered most oftenwithreligiousorganizations(35%),followedby educationalfacilities(26.7%)andsocialservicegroups (14%). Geographically,mostU.S.volunteersin2010lived inruralareas(27.9%),narrowlyoutdoingthoseinthe suburbs(27.5%)andoutpacingresidentsinurban centers(22.9%). South Central States Results When 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%)wasthe top job for Texas volunteers, followed closely by fundraising at 24.9%. Mirroring the national trend, state volunteers chosetohelpreligiousorganizations(arangeof3843%acrossthefivestates),followedbyeducational and social service groups. Geographically, those in Texas' suburban and rural marketswerenearlyneck-and-neck.Morethan25%of Lone Star volunteers lived in the suburbs, with 24.9% in rural communities and 22.3% in urban markets. AcrossallfiveSouthCentralstates,however,rural volunteers contributed the most hours, ranging from 52 hours in Arkansas to 72 hours in Oklahoma. In Texas,ruralvolunteersworkedanaverageof64hours, comparedwith56suburbanhoursand48cityhours. City Comparisons InthefiveSouthCentralStates,Oklahomahad the top two volunteer rates per city: Oklahoma City (32.1%)andTulsa(31%).Theremainingtop10South Central 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%);and Houston(22.5%). Fundraisingwasthetopvolunteeractivityin Austin;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,while tutoring 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 Houstonoffice.Hecanbereachedatjames.black@ nmss.org. MoviNG ToWARD A WoRLD FREE oF MS 5 Meet Our 2011 Volunteer HallofFameInductees At the National MS Society's 2011 National Conference in Dallas Nov. 2 � 4, the following peoplewillbeinductedintotheSociety'sVolunteerHallofFame.Recognitionaspartofthiselite group is one of the highest honors awarded to volunteers with the Society. Advocacy Champion: Kim Campbell KimCampbellisanMSactivistfromKyle,Texas.Kimwasdiagnosed with MS nearly three decades ago, but she has never let her diagnosis stopherfromtakingaction.Kimreachesouttoherlocal,stateand federal 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 engle JackEnglewasdiagnosedwithMSin1996.AresidentofKingwood, Texas, Jack has been a volunteer for the National MS Society since 2002, whenhevolunteeredforhisfirstFamilyDiscoveryCamp.Sincethen,he has 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 Forsthuber ThomasG.Forsthuber,M.D.,Ph.D.,isProfessorofImmunologyand AdjunctProfessorofPathologyatTheUniversityofTexasHealth ScienceCenteratSanAntonio.Dr.ForsthubersupportstheSociety in engaging, inspiring and generating hope for the future through researchpromotion.Inhis20-yearcareerstudyingMS,hehasreceived numerous 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,includingtheNational MS Society. 6 MSConnection � FALL 2011 Society's 2011 National Conference Heads to Big D 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). Health Professionals Champion: Dr. George Hutton GeorgeHutton,M.D.,isChairmanoftheSociety'sSouthCentralRegional Clinical Advisory Committee and a champion for everyone with MS. As AssistantMedicalDirectorandClinicalResearchDirectoroftheMaxine Mesinger 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 maxwell FortWorth,TexasresidentBrettMaxwellwasdiagnosedwithmultiple sclerosisinApril2002.Forthepasteightyears,hehasvolunteeredwith the 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. MoviNG ToWARD A WoRLD FREE oF MS 7 2011 Scholarship RecipientsAnnounced Multiple sclerosis shouldn't stand in the way of an education. This is why the National MS Society's scholarship program exists: to help highly qualifiedstudentswhohavebeendiagnosedwithMSorwhohavea parent with MS achieve their dreams of going to college. The Society established its scholarship program in2003.Initsfirstyearofoperation,theprogram awarded36scholarshipsforatotalof$68,000. Since then, this important initiative has continued to grow; in 2011, more than $1 million was awarded nationwideto639scholars,anincreaseof149 students since 2010. Regionally,theNationalMSSocietyispleasedto announce the 2011 scholarship recipients in Arkansas, Louisiana, New Mexico, Oklahoma and Texas. This year,theSocietywasabletoaward61college-bound students 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 demonstrationoftheneedforthistargetedfinancial assistance 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). 8 MSConnection � FALL 2011 The Society's 2011 South Central scholars � listed in alphabetical order by state � are: ARkANSAS Dallas Barnett Hannah Coker Brittany Curry KatherineKordsmeier AshleyRenegar KellyStrickland LouiSiANA Samantha Guidry Lauren Lejeune Troy Norton JoshuaRandall Gill Walker Jr. NEW MExiCo KristineDavis Maraka Hannagan KathrynSanchez okLAHoMA Mary Barker KennethBlack Tracy Gilliam KatieHanson Alyson Heath JeremyKinsey Grant Morgan Callie Mort SethRutledge Whitney Sterett MackenzieStout TExAS KellyAmmons KelseaBaker Bradley Bellows Lauren Brewer Elliot Cleaver KrystalCortez KaylaDavis KatherineDeHaven Austin Duval Skyler Ewing SaraFuerst Haley Gaston KamronGatlin Brandi Harrison Taylor Hatch David Hatteberg Avery Jones Emily Jones BridgetteKieffer Chelsea Lemons RyeinMarks AnnMartinez Anisha Mathew Mandi Moran ReidMunger Paige Nowlin Austin Payne Bridget Petty Lydia Sancer Aubrey Scott KierstenSmith Zachary Smith Brenna Stubbs KassieTrevino Justin Williams Emily Windolph 2012 Scholarship Applications Available Online 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 postsecondary 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. MoviNG ToWARD A WoRLD FREE oF MS 9 Stuff Our Stocking for the Holidays and Beyond W hile many people have holiday wish lists at this time of year, the National MS Society's wish list is in season year-round. FinancialgiftsprovidetheSocietywiththemostflexibility in delivering programs and services to people living with and affectedbymultiplesclerosis.Werecognize,however,that many 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 firstname.lastname@example.com. � 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 10 MSConnection � FALL 2011 AYearinReview: How Individual Giving Makes a Difference byKristenStubbs Editor'snote:AfteranoutstandingtenureasRegional VicePresident,StrategicPhilanthropy,Kristen Stubbs is leaving the Society for the next stage of her professionalcareerinthenon-profitsector.Wewish her well in her continuing service to our community andarepleasedtoshareherfinalyear-endreview column with our MSConnection readers. Iamalwaysamazedathowquicklytimefliestheolder weget.Rememberwhenasalittlekidyouthought Christmas would never come? Well, here we are again windingdowntheyearandreflectingoncemoreon where 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:NoOpportunity Wasted 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,RestorelostfunctionandEndMS forever.Stop*Restore*Endisournewmantraaround theSocietyandIinviteyoutobecomeaResearch Champion 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.aspxandtake the10-minuteResearchChampioncoursetojoin thousands of other people who are a part of the MS ResearchRevolution. Speaking of research, what a difference a year canmake.In2011,wesawtheveryfirstoraldiseasemodifying drug come to market. What a breakthrough! ForsomepeoplelivingwithMS,theycannowtake a 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. OurvariousSouthCentralofficescontinueto providemanyimportantandlife-changingservices to people living with MS, their families and the health care providers who serve them. We continue to help peopleinfinancialcrisis,holdwellnessandexercise classes 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,pleasekeep in 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-deductible gift 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-enddonationtothe Society, please contact Taylor Mallia at taylor.mallia@ nmss.org. MoviNG ToWARD A WoRLD FREE oF MS 11 ReadAllAboutIt with Lending Library In support of our mission, the National MS meet the amount of requests received, two books Society provides access to accurate, current and will be sent at a time. If you request more than two comprehensive information to people with MS. books, the remainder of your order will be mailed Books and other media resources are available in increments of two upon the return of the books through the Lending Library at no cost to those with initially mailed to you and according to availability. MS and their families. This process will continue until your order is To browse the complete. To browse the lending Lending Library and Items are loaned out for a place an order, visit three-weekperiodtohelp Libraryandplaceanorder,visit JointheMovementLoneStar. JointheMovementloneStar.org meet the requests of other org and click the "Library and members. Included with your and click the "library and Literature"linkintheleftshipmentwillbeapostageliterature" link in the left-hand paid return envelope so books hand navigation tab. Uponplacinganorderwith may be returned at no charge navigation tab. the Lending Library, please to you. If you wish to keep the know that we will work books for longer than three diligentlytofillyourrequestinatimelymanner. weeks,contactourofficetorenew.Brochuresare Note that some books may be currently checked out yours to keep and do not need to be returned. by other members at the time of your order. We will If you have questions about your order, call the keep a record of your entire order and, as materials Societyat1-800-344-4867(press2). become available, they will be mailed to you. To 12 MSConnection � FALL 2011 LiveFully,LiveWellProgram Promotes Wellness and Health M anaging your health and wellness is an integral part of living well with multiple sclerosis. LiveFully,LiveWellisacomprehensivewellness program from the National MS Society and Can Do MS, designed for people with MS and their support partners. LiveFully,LiveWellcoverstopicsaffecting the 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. 20 Planning for Your Future Nov. 17 How Does Exercise Fit into Your Life with MS? Dec. 1 Eating 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,maximizing mobilityandachievingindependence,fatigue-related challenges, 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-personprograminDallason Nov. 5. The free program will include presentations andworkshopsonmoodandcognition,prioritizing your time and activities, and attending to your health. Registrationforthein-personprogramclosesat1p.m. Friday,Nov.4.Thisprogramtendstofillquickly,so register today via the contact information below. There will be no registration on the day of the event. live Fully, live Well In-Person Program Saturday,Nov.5,2011�8:30a.m.�3:15p.m. Dallas, Texas Location to be announced. (Askfordetailsatregistration.) To register or for more information, contact Can DoMultipleSclerosisat1-800-367-3101orinfo@ mscando.org. MoviNG ToWARD A WoRLD FREE oF MS 13 TexanTakesUniqueSteps on100-MileJourney byLeeKilborn ougRyanlikestorun.He'sspentyearsrunning marathons and ultra marathons, even running 100-milemountainraces.Allofthatroughterrainwas roughonDoug'sbody,so,inanefforttostayfitbut be 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."Thatfleetingthought turned 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 professorattheUniversityofNorth Texas 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-timeandcontinuestoworkoutnearly10hoursa week. Over the years, Sherry has even developed innovative exercise routines involving winches, hand pedalsandgrabbars.Forexample,sheutilizesgrab bars to do squats, followed by isometric exercises with an elastic band and plastic ball, then wrapping up with bicep curls using a hammer. D 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-milestationary journeyat24HourFitnessin Lewisville. With short bathroom and caloric intake breaks, he completed his personal endurance challenge and approachedthe"finishline"�andhis inspiration, 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 theNationalMSSocietyat432-522-2143formore information. LeeKilbornistheCommunityDevelopmentManager istheSociety'sNorthTexasoffice.Shecanbereached at email@example.com. 14 MSConnection � FALL 2011 Cyclists Accept the Challenge in October O ctobermarkstheannualreturnoftheTexasbasedBikeMS: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-daytrek to support everyone living with multiplesclerosis.Onthefirst day, Bike MS: Valero participants have their choice of three options covering47-,70-and100-mile routes. All routes lead to their overnight home at the Comal CountyFairGroundsinNew Braunfels. FollowingbreakfastonSunday morning,Oct.16,cyclistssaddle upforthe60-milereturntoSan Antonioandthefinishlineatthe AT&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-milejourneyon DayOne,fullysupportedonthewell-organizedand carefully-plannedroutebysafety,police,medicaland Society 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,beltbusting 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 riderspedal72milesbacktothefinish in Hammond, La. Last year, Bike MS: Louisiana participants raised more than $593,000.For2011,fundraisersare targetingagoalof$663,000todriveMS-related services and research. Jointhefestivitiesasarider,volunteerordonor.For information on the Bike MS: Valero event, visit www. bikeMStexas.org.FordetailsonBikeMS:Louisiana, visit www.bikeMSlouisiana.org. MoviNG ToWARD A WoRLD FREE oF MS 15 TexansRallyfor FallWalks by James Black T housandsofresidentsinAustin,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'sopento everyone, 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.Thereisno minimum 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,thepathtoward joining 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."For my 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, findthemeanstoendthis debilitating 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. 16 MSConnection � FALL 2011 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`Rhoads to the Cure.'" KatyparticipantCrystalFloresisalsosettingan important 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,"Iwas diagnosed with MS in April 2010. As you can imagine, thisdiagnosischangedmylife.Thisyear,forthefirst time,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'llalsofindplentyofuseful information including route maps, parking, photos, fundraising tools, lists of top fundraisers and top fundraising teams, walker spotlight stories and more. Dates,locationsandtimesforthe2011FallWalk MSseriesfollow.NotethatthewalkinKatyoffersa 1-milelooproute,butallotherwalksoffer1-mileand 5Krouteoptions. Forquestionsorcommentsonthisarticle, contact MSConnection Editor James Black at firstname.lastname@example.com. saturday, oct. 1 Walk MS: Waco, presented by Subway Heritage Square 3rd Street and Austin Avenue in Waco Site opens: 8 a.m. Walk begins: 9 a.m. saturday, oct. 22 WalkMS:Katy,presentedbyKBR KatyMillsMall 5000KatyMillsCircleinKaty Note: Park at Entrance 8 near the AMC Theatre Site opens: 8 a.m. Walk begins: 9 a.m. saturday, oct. 22 WalkMS:TheWoodlands,presentedbyKBR RobFlemingPark 6055CreeksideForestDriveinTheWoodlands Site opens: 8 a.m. Walk begins: 9 a.m. saturday, oct. 29 Walk MS: Austin Dell Diamond Hwy.79at3400EastPalmValleyinRoundRock Site opens: 9 a.m. Walk begins: 10 a.m. saturday, oct. 29 Walk MS: Tyler, presented by Subway RoseRudmanPark 411 ESE Loop 323 in Tyler Note:SiteisacrossfromtheRobertE.LeeHighSchool footballfield Site opens: 8 a.m. Walk begins: 9 a.m. saturday, Nov. 12 WalkMS:Kemah,presentedbyKBR KemahBoardwalk 2155KippAve.inKemah Site opens: 8 a.m. Walk begins: 9 a.m. saturday, Nov. 12 WalkMS:SugarLand,presentedbyKBR Sugar Land Memorial Park 15300UniversityBlvd.inSugarLand Site opens: 8 a.m. Walk begins: 9 a.m. sunday, Nov. 13 WalkMS:Houston,presentedbyKBR UniversityofHoustonmaincampus 4800CalhounRoadinHouston Site opens: 8 a.m. Walk begins: 9 a.m. MoviNG ToWARD A WoRLD FREE oF MS 17 ADVOCACY ForMSActivists,Successisin Session at Texas Legislature By 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'sadvocacyeffortsand successes with the 2011 session of the Texas Legislature. 18 MSConnection � FALL 2011 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'sRainy DayFundforshortfallsinthecurrentbudget,andthe use 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,informalfamily caregivers in Texas who care for a loved one. MS activistssuccessfullyadvocatedforFamilyCaregiver Respitelegislation,creatingaprogramallowingmiddle income 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,MSactivistKimCampbellprovided powerful 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'spassionfor advocacy,Texas'LifespanRespiteCareProgram's$1 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)thatproposeddefundingtheOffice ofPublicInsuranceCounsel(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 Advocacy by the Numbers � 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 MoviNG ToWARD A WoRLD FREE oF MS 19 Rep. Rick Hardcastle shared his personal story of living with MS and energized attendees at the 2011 Texas Public Policy Conference. make insurance affordable and available to Texans living with chronic illness. Rep.IsaacandRep.Torresultimatelywithdrew their 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.Thisvictorywasaresultoftheleadershipand tenacitybyMSactivistsDeborahandDavidRankin, whobroughttheissuetotheattentionoftheOfficeof PublicInsuranceCounsel,astateofficethatrepresents Texans on insurance matters at the department. Davidhadfirst-handexperiencewithdiscretionary clauses,havingbeendeniedlong-termdisability benefitsafterhisdiagnosisin2006.Deborahand David 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.John Smithee(R-Amarillo)filedHouseBill3017toputthe banondiscretionaryclausesinTexaslaw.TheRankins partnered 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'sprovidedkeytestimonyintheHouse Insurance 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,"Thisis averycompellingstoryofDavidRankin.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 20 MSConnection � FALL 2011 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.RickPerryonJune17andbecameeffective immediately. Continuity of Prescription Drug Coverage (HB 1405) Accessing prescription drugs is a daily challenge formanyTexanswithMS.Thehighcostofcopays,andincreasinglyco-insurance,areevenmore insurmountableduringdifficulteconomictimes.Itis essential 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.John Smithee, Chairman of the House Insurance Committee, tofileHouseBill1405,legislationtoprohibitmidyearincreasestoprescriptionco-paysandtoprovide advancenoticeofformularychange.Representatives CraigEiland(D-Galveston),RickHardcastleand BarbaraNash(R-Arlington)joinedhimasJointAuthors 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-modifyingandsymptommanagement drugs.Theyexplainedhowunexpectedmid-year increasestoco-payscansometimesmakeitimpossible to afford these critical medications. MS activist Tracy Brinton was among those who testifiedbeforetheHouseInsuranceCommittee and 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'scontractandrequires60daynoticeofanychangespriortothere-enrollment period. It was sponsored in the Senate by Senator Bob MoviNG ToWARD A WoRLD FREE oF MS 21 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. Deuell(R-Greenville),Vice-ChairoftheStateAffairs Committee, 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,we work to provide a voice for Texans living with chronic illness and disabilities in many policy areas, including healthinsurancereformandbetteraccesstolong-term care 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,agroupoforganizations that 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.Thislegislationwould have 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 exchangewouldhavetoofferastatedsetofbenefits and the exchange would give Texans information allowing them to easily compare price and coverage optionsbetweentheplans.Unfortunately,HB636 did not pass. The Society will closely monitor efforts currently underway at the Texas Department of Insurance to 22 MSConnection � FALL 2011 implementastate-runhealthinsuranceexchange.As outlined 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-runhealth insurance 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)tofileHouse Bill 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-termcare have alternatives to more costly facility settings. The SocietysupportedtheAARP'seffortsthissession and, although HB 329 did not pass, we will continue topartnerwiththeAARPinanyfutureattemptsto pass similar legislation. MireyaZapataistheRegionalDirectorforActivism andLongTermServicesintheSociety'sAustinoffice. email@example.com. MoviNG ToWARD A WoRLD FREE oF MS 23 New Orleans Prepares for Artistic RenaissanceThisNovember by James Black ew 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. CreativityreignswhentheLouisianaofficeofthe National MS Society hosts the sixth annual Peoples HealthRenaissancePartyat7p.m.Friday,Dec.9,2011, attheRenaissanceArtsHotelinNewOrleans.The goodtimesrollwithaspirited,festiveeveningoffine food,drinkandjazzyentertainment,witheye-catching artwork and auction packages up for bids. But this isn't simply art for art's sake. This is a party with a purpose. Since2006,theRenaissancePartyhasraisedmore than$650,000tosupportprogramsandservices for men, women and children affected by multiple sclerosis.Fundsraisedfromdonorsandcharitable attendees help paint a clearer picture of a world free of MS. N Thatworldisbroughttovividlifethroughdozens of paintings and sculptures created and donated for auction by the Crescent City's most talented artists. There'ssomethingforeveryoneattheRenaissance Party, however. At last year's event, just a few of themanyotherarticlesupforauctionwereaprize packageofa50-inchplasmaTV,Blu-raydiscplayer andHDsurroundsoundsystem;finejewelry;dinner parties; a vacation to Steamboat Springs, Colo.; theater passes; Pilates classes; athletic club memberships; a "staycation"atNewOrleans'trendiestspots;roundtripplanetickets;winetastings;giftcertificates; memorabiliasignedbyNFLquarterbacksPeyton and 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-upof NewOrleans'bestdishesanddesserts.Alivejazzband will be on stage to help guests dance the calories away. 24 MSConnection � FALL 2011 "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,VicePresidentof theSociety'sLouisianaoffice."Theirpartnershiphelps enhancethehealthandwell-beingofeveryonewe serve. It's a special way that Peoples Health and our guestsattheRenaissancePartyaregivingbackand supporting our communities." Sharing that frame of mind, volunteer members of theRenaissancePartyPlanningCommittee,working with the Society's Louisiana staff, are putting their considerable talents to perfect use to make this year's party unforgettable. "TheRenaissancePartyisascolorfulandas exciting 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." Formoreinformationortoreservetickets forthe2011PeoplesHealthRenaissanceParty, visit the Society's Louisiana website at www. nationalMSsociety.org/lam. MSConnection Editor James Black encourages everyone to experience New Orleans' great RenaissancePartyonDec.9.Forcommentsor questions on this article, he can be reached at email@example.com. MoviNG ToWARD A WoRLD FREE oF MS 25 RESEARCH Research Round-Up Global Consortium Doubles the Number of ms Risk Genes Identified In the largest MS genetics study ever undertaken, aglobalcollaborationofscientistshasidentified 29 new genetic variants associated with MS, and confirmed23otherspreviouslyassociatedwiththe disease, 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-third havepreviouslybeenconfirmedtobeassociatedwith autoimmune diseases. In a second study, collaborators showed diseases believed to be autoimmune share many similar genetic variants. To date, the results of geneticsstudiesinMSdonotsignificantlyimprovethe ability to provide genetic counseling to individuals. However,thefindingspromisetobetterdefinethe biological pathways leading to MS and enhance our ability to design better treatments for early MS. medtronic Reports on Possible Battery 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 performancemaycausethedrugflowratetobereset to a very low level. In the event of reduced battery performance,apersonwouldexperienceasignificant increase 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,callMedtronicPatientServices toll-freeat1-800-510-6735. study in Taiwan Finds Increased Risk of Developing MS Following virus Attack Researchershavereportedthatpeoplewho experiencedanattackofherpeszoster�whichusually manifests 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 findingscamefromauniquestudyusingalargedata set 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.;andcolleaguesatTaipeiMedicalUniversity andHospitalreportedtheirfindingsintheJune2011 Journal of Infectious Diseases. 26 MSConnection � FALL 2011 Since initial exposure to numerous viruses, bacteria and other microbes occurs during childhood, andsincevirusesarewell-recognizedascausesof nervoussystemdamageandinflammation,itis possible that a virus or other infectious agent is the triggeringfactorinMS.Morethanadozenvirusesand bacteria � including measles, canine distemper, human herpesvirus-6andChlamydiapneumonia�havebeen investigated to determine if they are involved in the development of MS. Recently,varioustypesofevidencepointin particular to an association between MS and the Epstein-Barrvirus,aherpesvirusknowntocause infectious 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.FoodandDrug Administration made it apparent that clinical trials of thetherapywouldnotaddresstheFDA'srequirements for approval. Details of these requirements have not been made public. In March, the company had received a letter from theFDAindicatingthatitsapplicationforapproval was 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 Finds Possible Regulator of Myelin Repair Researchersreportedthissummerthatamolecule � called Axin2 � may be essential to regulating the repairofnervefiber-insulatingmyelin,andmaybea good 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-fundedbythe National 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-environment Interaction in Cells from Persons with ms Studying human cells isolated in the laboratory, researchers have revealed a novel interaction between twogenesthatinfluencesusceptibilitytodeveloping MS, certain environmental factors, and a chemical processcalledN-glycosylationthatmodifiesthe structure 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�Irvine andcolleaguespublishedtheirfindingsintheMay31, 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.Researchersthenexamined how a particular environmental factor such as vitamin D affected this interaction. Resultssuggestthatthesegenesdoalter N-glycosylationincellsisolatedinthelaboratory, but that both vitamin D and a dietary supplement calledN-acetylglucosaminewereabletosuppressthis process 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 Researchersreportedthatlowbonemasswas more prevalent among people newly diagnosed with MS, or those with clinically isolated syndrome (CIS, MoviNG ToWARD A WoRLD FREE oF MS 27 afirstepisodeofMS-likesymptoms),thanamong controls 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 OsloUniversityHospitalreportedtheirfindings in 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 significantlylowerinthespineandhipevenafter adjusting for other possible risk factors. The authors concluded that this study "calls for an active approach tooptimizebonehealthinearlystagesofMS." Positive Results Announced from First Phase III study of Alemtuzumab in ms SanofianditssubsidiaryGenzymeannouncedthat theexperimentalintravenoustherapyalemtuzumab (withaproposedbrandnameLemtrada)metone oftwoprimaryendpointsbysignificantlyreducing relapseratesinatwo-yearstudycomparingtwo annualcyclesofalemtuzumabagainststandard subcutaneousdosingofRebif.Thestudy,called CARE-MSI,involved581peoplewithearlyrelapsingremitting MS. The study did not meet its second primary endpoint of slowing disease progression comparedtoRebif.Dataanalysisisongoingand the company expects to provide a full report at an upcoming medical meeting. Another trial of alemtuzumab,calledCARE-MS-II,iscurrently underway. study Investigates Cost effectiveness of Therapies to Treat MS Astudyco-fundedbytheNationalMSSociety, theNationalInstitutesofHealthandtheUniversityof Rochesterexaminedthecost-effectivenessoftherapies totreatMS.ResultswerereleasedinJuly2011,finding that the cost for improving the quality of life for people withMSintheUnitedStatesishigh.Thestudyin no way suggested that anyone appropriate for these treatments should not be on them; in fact, it found that theearlierdisease-modifyingtherapieswereused,the morecost-effectivetheywere.Thisaddstogrowing evidence suggesting that treating MS early and consistently is the best way to ward off future disease activity. Initial Results Released from Phase III study of laquinimod Teva Pharmaceutical Industries Ltd. and Active Biotech announced in August that the phase III BRAVOstudy�inwhichtheexperimentaloraldrug laquinimod was tested against inactive placebo in a study involving more than 1,300 people with relapsing-remittingMS�didnotreachitsprimarygoal of 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,asignificant reduction in average annual relapse rate was observed inthegroupreceivinglaquinimod.Furtheranalysisis ongoing. The companies plan to submit applications to regulatory authorities for the treatment of MS in the UnitedStatesandEuropeanUnion. Phase II Trial of Daclizumab Reduces Average 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 antibodydaclizumabdeliveredviamonthlyinjection under the skin � reduced the average annual relapse ratesignificantlyinastudyof600peoplewith relapsing-remittingMSoveraone-yeartrial.Fulldata from the "SELECT Study" are to be presented at an upcoming medical meeting. 28 MSConnection � FALL 2011 RESEARCH Resources Help You Take the Next Step W hether 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 MSNextStepisdesignedtoanswercommonlyasked 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(press1 whenasked). Knowledge is Power Forindividualswhohavealreadydevelopeda basicknowledgeofMS,KnowledgeisPowerisan ideal way to add to your knowledge and learn how to live better with multiple sclerosis. KnowledgeisPowerisafree,at-homeeducational series for people newly diagnosed and their families. ItiswrittenbyDr.RosalindKalb,ahighly-regarded author and psychologist who knows about the effects of MS on your life and the lives of those who care about you. Theprogramprovidesup-to-datefactsabout many 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,Knowledge is Power gives you new topics each week, including dealingwithyourdiagnosisanddisclosure,diseasemodifyingtreatments,maximizingemployment options, working with your doctor and more. YoucanhaveKnowledgeisPowerdeliveredto your email or postal address at no cost to you. Contact theSocietyat1-800-344-4867(press1)andspecify emailorpostalmailfordelivery.KnowledgeisPoweris available in Spanish upon request. MoviNG ToWARD A WoRLD FREE oF MS 29 RESEARCH Neurologists Begin to Build Consensus on Managing Pediatric MS he 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'sHospitalofPhiladelphiaidentifiedand agreedonspecifictreatmentapproaches,andalso identifiedareasforfurtherresearch.TheSocietyis supporting 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�definedasthose upto18yearsold�intheUnitedStateshavemultiple sclerosis. 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,theauthorsinvited67physicians associatedwiththenetwork(orothersidentified fortheirexpertiseinMSandsimilardiseases)to participate; 42 accepted. They sent out a series of questionnaires that were answered anonymously and thenanalyzed.Technicalsupportforthiseffortwas provided by the Society. Consensus�definedasagreementbymorethan 75 percent of the respondents � was reached on several items, including: T �Initialevaluationofachildorteenagershould involvemagneticresonanceimaging(MRI)scansof the brain and several blood tests, including complete blood count, erythrocyte sedimentation rate and basic metabolic panel. �Acuteattacksofthebrainorspinalcorddonot always 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-line treatment of choice for acute attacks of MS in children, and similar disorders such as neuromyelitis optica. �Respondentswouldstoporchangediseasemodifying therapy if relapses increase or if side effects occur that interfere with daily activities. Forsomeitems,amajorityopinionwasformed (50to75percentofrespondents).Forexample,a majoritysupportedtheuseofdisease-modifying therapies in children diagnosed with MS or considered at high risk for the disease. Otherareaswerenotagreedupon,reflectinga need for further research. There was lack of agreement ontheoptimalchoiceofsecond-linetreatmentsfor acuteattacksandonthefrequencyofMRIscanswhen monitoring pediatric patients with MS and similar disorders. Also, consensus was not reached on whether tousedisease-modifyingtherapiesinchildrenyounger than 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 collaborationtoincludeothersitesaroundtheUnited States that are interested in gathering data on these diseases. 30 MSConnection � FALL 2011 NewCMSCReportsFocus on Quality of Life Issues FromNationalMSSocietyreports RESEARCH 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.BrianSandroffandcolleaguesattheUniversityof Illinois-Urbanaenrolled42peoplewithMSwhowore accelerometers 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? Fatigueisoneofthemostcommonsymptomsof MS and may be the most prominent symptom in a person who otherwise has minimal activity limitations. JosephBerger,M.D.,andcolleaguesattheUniversity ofKentuckyinLexingtonlookedatthefrequencywith which 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.FatigueprecededMSdiagnosisby an 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 Balancecanbedifficulttomaintainforpeople withMS.ErinKorsbrek,MSc,andcolleaguesatthe UniversityofCalgaryenrolled18peoplewithMS inastudyusingtheNintendoWiiFitPlusgaming New Pediatric MS Handbook Provides Parents with Tools for School I n August, the National MS Society introduced a resource for families with a child or teen with MS. The "Managing School-RelatedIssues:AGuide for 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 attheRegionalPediatricMS CenteratUniversityofCalifornia �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 bycallingtheSocietyat1-800344-4867(press1).Thereisno charge for this new pediatric MS resource. MoviNG ToWARD A WoRLD FREE oF MS 31 systemthreetimesperweekforsixweeks.Functional balance 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-weektrial to determine whether Wii is an effective balance rehabilitation tool for people with MS. lsu-shreveport team finds negative preclinical results in resveratol Researchhassuggestedthatresveratrol,a component of red wine, enhances the activity of a molecule(SIRT1)thatmighthelptopreservenerve fibers.Ithasbeenshowninseveralstudiestodecrease theseverityoftheMS-likediseaseEAEinmice. FumitakaSoto,Ph.D.,atLouisianaStateUniversityin Shreveport and colleagues reported that resveratrol actually worsened EAE in mice, causing severe damage.Furtherresearchwillbeneededtosortout this issue. evaluating relationship education "RelationshipMatters:AProgramforCouples Living with MS" was developed by the National MS Society to help couples affected by MS to strengthen theirpartnershipsandminimizetheimpactof MS on their lives. Couples receive eight hours of programmingviateleclassesorin-personworkshops. KimberlyKoch,MPA,withtheNationalMSSociety and colleagues looked at a sample of more than 1,000participants.Theyfoundsignificantincreases in relationship satisfaction, along with clinically significantimprovementinmentalhealth.Funding forthisprojectwasprovidedbytheU.S.Department of Health and Human Services, Administration for ChildrenandFamilies. Risk tolerance for MS therapies Recently,severalmoreeffective,butmorerisky, therapies have become available to treat MS, and moreareunderdevelopment.SocietygranteeRobert Fox,M.D.,andcolleaguesattheClevelandClinic Foundationadministeredaweb-basedquestionnaire on risk tolerance to more than 10,000 people enrolled intheNorthAmericanResearchCommitteeon MS(NARCOMS)registry.Atotalof5,446people completedthequestionnaire.Resultsshowedthat three 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 Researchsuggestssmokingmayincreasetherisk of developing MS and may speed disease progression. JosephOstroffandcolleaguesatStateUniversity of New York in Buffalo examined factors that distinguished smokers from nonsmokers in a sample of1,300peoplewithMS.Smokersweresignificantly more 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,andcolleaguesat theUniversityofNorthCarolina-ChapelHill,along withKayeGoochoftheSociety'sEasternNorth Carolina 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-specific knowledge.Theteamhopesthistwo-yearprogram will serve as a model for other universities. Breathing problems during sleep Sleep-disorderedbreathingisaproblemof respiration that occurs during sleep, such as sleep apnea. Tiffany Braley, M.D., a Sylvia Lawry Physician FellowoftheNationalMSSociety,exploredthe occurrence 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)hadapredispositionforsleepdisordered breathing. People with these disorders reported fatigue, lack of energy or tiredness to be their most problematic symptom, as opposed to excessive daytime sleepiness. 32 MSConnection � FALL 2011 130 Studies Presented in AnnualUpdateofClinicalTrials his 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;theseare thetrialsthatprovidedatapresentedtotheU.S.Food andDrugAdministrationwhensponsorsfilefordrug approval. �Anincreasingnumberofnovelagentsarebeing tested 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. �Ninetrialsareexaminingwhetherrehabilitation interventions(e.g.,cycling)canimprovesymptoms including depression, mobility, spasticity and cognitive function. By comparison, there were only two of these trials on the list in 2005. �MovingMSclinicalresearchforwardisnotpossible without 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.ClickontheResearchtab near 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 RESEARCH SocietyProvidesOnlineResourceforLocatingLocalStudies T everyone to look forward to new and better therapies. Many factors are involved in making sure a study is conductedproperlyandthatresultsarevalid.TheU.S. FoodandDrugAdministrationrequirestherapiesto undergo three phases of clinical trials before they can be approved to treat people with MS: � Phase I�Thefirststepistodeterminesafety.Ina small 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.Thesemulticenter studies can span several years and several countries. FollowingFDAapproval,post-marketingstudies (phaseIV)mightbeconductedtoassesslong-term safety 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,arecent search by state found 13 recruiting clinical trials in Texas,fiveeachinArkansasandOklahoma,sixin Louisiana and eight in New Mexico. The database also includes a list of international studies. MoviNG ToWARD A WoRLD FREE oF MS 33 RESEARCH ResearchTeamsReportFirst Year's Progress from Initial Studies of CCSVI FromNationalMSSocietyreports hefirst-yearprogressreportsfromsevenmultidisciplinary teams investigating CCSVI (chronic cerebrospinalvenousinsufficiency)inMSindicate that they are on track to provide essential data and criticalanalysisasthesetwo-yearprojectsmove toward 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,theyarerefiningCCSVIimaging methods 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 requiredInstitutionalReviewBoardsintheUnited StatesortheResearchEthicsBoardinCanada,afirst step established by regulatory authorities to protect human subjects involved in research projects. More T than486peoplehavealreadyundergonescanning with 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,MRI scans 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,Chief ResearchOfficerattheNationalMSSociety."Results from these comprehensive studies will help inform important next steps." The funded investigators reported progress in establishingstandardizedprotocols,recruitingand scanning participants, and in the development of plansforsharingtheirfindings: 34 MSConnection � FALL 2011 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 ResearchEthicsBoardandbeganenrollingchildren and teenagers who have MS, and healthy controls of the same age. They are seeking venous abnormalities usingnon-invasiveMRImeasuresofveinanatomyand novelmeasuresofvenousflow,aswellasultrasound. UnlikeadultswithMS,childrenareunlikelytohave age-relatedchangesinbloodvessels,andarelesslikely to 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 toanalyzefindingsonlyafterall90participantshave undergone the testing. Dr. Fiona Costello, Hotchkiss Brain institute, university of Calgary, Calgary, Alberta: OnceitreceivedResearchEthicsBoardapproval, Dr.Costello'steambeganrecruitingacross-sectionof people 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.Zamboniandtheyhaverefined their 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'steamslowedrecruitmentbriefly toupgradetoanew3Tesla(3T)MRIscanner,twice asstrongasstandardclinicalMRI,andtheyhave expandedtheirMRIteamtoincludetwoadditional, 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 undergoMRvenographyandultrasoundtechniques to investigate CCSVI in people with early and later stages of MS, controls with other conditions and healthy volunteers, now that they have received approvalofthestudyfromtheInstitutionalReview Board(IRB).TheteamhasrefineditsMRvenography protocoltoaccountforvariationsinbloodflowthat occur with breathing and heartbeats. They have determined that they will use a relatively new contrast agentordyethatwillpermithigh-qualityimages of the veins in the head and neck and for measuring bloodflowinthebrain.Thiswillenabletheentire MRI/MRVexamtobecompletedwithonetimesaving injection instead of two. Theyhavealsostandardizedlocationsalong thelengthofveinswheretheytakebloodflow measurements because they have found large differencesinbothanatomyandsizeofheadandneck veins. Dr. Robert Fox, Cleveland Clinic Foundation, Cleveland: AfterhisteamreceivedIRBapprovalforusingMR venography,ultrasound,MRIandclinicalmeasures inpeoplewithMSorwhoareatriskforMS(CIS) and comparison groups, they began recruiting and scanning participants. The ultrasound team found several aspects of the published methodology ambiguous;theteamhasstandardizedprotocoland analysis 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 MoviNG ToWARD A WoRLD FREE oF MS 35 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)couldimpactresultsofseveralofthecriteria used 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: HisteamobtainedResearchEthicsBoardapproval after 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,usingMRI andMRvenography,inpeoplewithoutMS,whichwill be used to compare with various scans in people with MS.Dr.Torresexpectedtofinalizephaseoneofthe study 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 Clinic uBC Faculty of medicine and Dr. katherine knox, Saskatoon MS Clinic, university of Saskatchewan: AfterbothsitesreceivedResearchEthicsBoard approval, they began to recruit and have scanned asignificantnumberofparticipants.Theyarealso usingcathetervenographyandMRvenographyto investigate the prevalence of CCSVI in people with MS and controls without MS. After the radiologists at bothsitesmetinFebruary2011toensureconsistency of their protocols, they did a second wave of recruitmentandhopetofinishalltestingbeforethe end of 2011. Dr. Jerry Wolinsky, university of Texas Health Science Center at Houston: AfterreceivingIRBapproval,Dr.Wolinsky's team began recruiting participants. Their neurosonographer received intensive training for intracranial and extracranial ultrasound scanning techniques.Theteamhasalreadyscannedasignificant number of participants, which include people with different types of MS, people with other conditions and people with no known health problems. The team istestingwhetherotherimagingmethodscanconfirm theultrasoundfindings,whileidentifyingthemost reliable technique to screen for CCSVI. Dr. Wolinsky's team continues to encounter difficultyinrecruitingnon-MScontrolsubjectswho don'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,investigatorsare makingsignificantprogressontheiroveralltwo-year study 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 recentlyannouncedbytheCanadianFederalMinister of 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. 36 MSConnection � FALL 2011 BusinessRelationships ProvideFoodforThought LupeTortillaandMyFitFoodsGiveBack with Mission to Serve MS Community by Calvin Pollard II elationships 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, goodsandservicestominimizeeventcostswhilebeing responsibly 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 sponsorslendsthemselvestohelpwithspecificgoods and 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�LupeTortillaandMy FitFoods�havefedalotoftheSociety'sconstituents over the past few years. In the last event season alone, R 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, businesseslikeLupeTortillaandMyFitFoodsprovide support 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,hecanbereachedatcalvin.pollard@ nmss.org. MoviNG ToWARD A WoRLD FREE oF MS 37 RegistrationOpensfor Spring 2012 Bike MS R egistration opens this October for two 2012 Bike MSfundraisingevents:theHouston-to-AustinBP MS150andtheFrisco-to-FortWorthBikeMS:Sam's Club rides. Combined,morethan16,000registeredcyclists and 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.Registrationforthe 2012 Bike MS: Sam's Club is scheduled to open Oct. 25.Toconfirmregistrationdates�andtosignupto ride, volunteer or donate � visit bikeMStexas.org. TheBPMS150rollsoutApril21-22,2012.The BikeMS:Sam'sClubisMay5-6,2012. 38 MSConnection � FALL 2011 National Multiple Sclerosis Society Lone Star Chapter 8111 North Stadium Drive, Suite 100 Houston, Texas 77054


text:
Novogen and CanTx Experimental Drug, Trx-1, Proves Effective in Vivo
Experimental drug designed to fight abdominal cancers passes important test
SYDNEY, March 18, 2014 /PRNewswire/ — Novogen Limited [ASX:NRT; NASDAQ:NVGN] and its joint venture company with Yale University, CanTx Inc, today announced an important milestone with lead candidate drug, Trx-1, demonstrating a potent anti-cancer effect in mice xenografted with human ovarian cancer stem cells.
CanTx is seeking a novel approach to the treatment of abdominal cancers, by developing a product to be administered intra-peritoneally with the ability to seek out tumor cells and to eliminate the full hierarchy of cells within tumors. The final product is envisaged to be Trx-1 in a 'smart' drug delivery system.
The first key step in that process was confirmation that Trx-1 alone would be effective. The study reported on today provides that confirmation.
The study was conducted in the laboratories of Gil Mor, M.D., Ph.D, Professor of Obstetrics, Gynecology and Reproductive Science at Yale School of Medicine, and involved an animal model for ovarian cancer considered to be highly representative of the clinical situation. In this model, ovarian cancer stem cells obtained from a patient with refractory ovarian cancer are injected intra-peritoneally, where they grow in a disseminated manner, forming multiple tumors in locations that resemble those observed in patients with ovarian cancer.
"Until now, we have not been able to identify a drug from any company that is effective in this model. So it is very exciting to observe an anti-tumoral effect with Trx-1," Prof. Mor said.
"But this is just the first step. We needed to establish the anti-cancer credentials of Trx-1 on its own. The second step that we hope to report on very soon is the final product of Trx-1 in a 'smart' delivery system, rather than the standard cyclodextrin carrier used in this study. The advantage of an intra-peritoneal product is that it delivers drug directly to where it is needed," Prof. Mor continued. "And while we are focusing for the moment on ovarian cancer, there is every reason to believe that the same strategy will be applicable to other types of tumors contained within the abdominal cavity, such as pancreatic and colorectal cancers."
"This represents a key inflection point for the Company and its super-benzopyran drug technology platform. The usual test of showing that a drug can stop the growth of standard cancer cell lines implanted under the skin of athymic mice is an important STOP: GO step for any experimental anti-cancer drug, but hardly an ultimate test," said Graham Kelly, Ph.D., Novogen and CanTx CEO. "Prof. Mor set us an ultimate test by setting out to replicate as much as possible the clinical situation. These ovarian cancer stem cells produce tumors comprising daughter cells that are highly chemo-resistant as well as being highly aggressive and tumorigenic."
"Trx-1 had shown high potency against human ovarian cancer stem cells and their daughter cells in vitro, leading us to believe that it is the first drug to be effective across the full spectrum of ovarian cancer cells at the same dosage, but this was the evidence that we needed to progress this drug into the clinic," Dr. Kelly said.
About Ovarian Cancer
The American Cancer Society estimates that over 22,000 women will be diagnosed with ovarian cancer during 2013 and 14,230 American women will die from the disease. It ranks fifth in cancer deaths among women, accounting for more deaths than any other cancer of the female reproductive system. This cancer mainly develops in older women. About half of the women who are diagnosed with ovarian cancer are 63 years or older. It is more common in white women that African-American women.
About Novogen Limited
Novogen is a public, Australian biotechnology company whose shares trade on both the Australian Securities Exchange ('NRT') and NASDAQ ('NVGN'). The Company is based in Sydney, Australia, and with a U.S. office in New Haven, Connecticut. The Company has two main drug technology platforms known as super-benzopyrans (SBP) and anti-tropomyosins (ATM). SBP drugs target cancer stem cells and are being developed for the treatment of ovarian cancer and glioblastoma. ATM drugs target the cancer cell cytoskeleton and are being developed for the treatment of melanoma, prostate cancer and neuroblastoma. Novogen has entered into a joint venture with Yale University known as CanTx Inc. with the aim of developing personalized chemotherapy for patients with ovarian cancer.
Further information is available on the Company's website, www.novogen.com.
For Further Information Contact:
Investors Media In the USA In the USA David Carey/Tanner Kaufman Hollister Hovey/Allison Parks Lazar Partners Lazar Partners +1 212-867-1762 + 1 212-867-1762 email@example.com firstname.lastname@example.com In Australia In Australia Rudi Michelson Dr. Douglas Pretsell Monsoon Communications Instinctif Partners 03 9620 3333 +61 (0)3 9657 0706 firstname.lastname@example.com In ROW Sue Charles/Stefanie Bacher Instinctif Partners +44 (0)20 7457 2020
Logo – http://photos.prnewswire.com/prnh/20131220/NY36990LOGO
SOURCE Novogen Limited

subset: commoncrawl


text:
S. Annamalai
Because of its proximity to production centres, rubber has been a traditional industry of the Temple City
Rubber goods worth about Rs.1,000 crore are produced in Madurai annually
All automobile majors are regular buyers of components
History, tradition and contiguity of Madurai favour a long rendezvous with rubber. This ancient city is home to rubber units that are the envy of many for the quality of products they manufacture, the timely delivery, the cost involved and eco-friendly practices they follow.
Because of its proximity to rubber producing centres, the city has had rubber as a traditional industry. Besides gloves, condoms, sports goods, mats and other utility products, Madurai contributes to the production of automobile components made of rubber in a big way.
"We (in Madurai) produce many automobile components, starting from tyres to the tiniest part," says B. T. Bangera, Managing Director, Hi-Tech Arai, a global supplier of automobile components.
All automobile majors, including General Motors, Ford, Toyota and Honda, are regular buyers of components.
Rubber goods worth about Rs.1,000 crore are produced here annually, according to Mr. Bangera. "Along with tyres and beltings, technically specified polymer engineered products for precision application are also produced here with zero defect. Because one defective component means a defective car," he adds.
Major contributor
The rubber industry, industrialists feel, has a rich potential to transform Madurai economy. The anticipated growth in this industry, triggered by a boom in automobile sector, will have a cascading effect on other wings of the local economy.
Upgrading technology, assisting with finance and applying good manufacturing practices will put the rubber industry on a higher pedestal when Madurai is gearing up to be recognised as one of the emerging industrial towns in the country.
Green industry
The rubber industry here is a 'green industry.'
The big manufacturers are the earliest to get ISO 14000 certification for good environment management systems.
Despite being an industry with potential to cause pollution, the manufacturers are taking "special care" to adopt environment-friendly processes.


text:
FAYETTEVILLE, Ark. (AP) - The University of Arkansas plans to present honorary doctorates to a death penalty opponent and an internationally known ornithologist.
A doctorate of arts and humane letters will be presented toSister Helen Prejean and a doctorate of arts and sciences will be presented to Frances James during UA's fall commencement ceremony on Dec. 21.
Prejean is author of Dead Man Walking: An Eyewitness Account to the Death Penalty in the United States, which was made into a movie. She also took part in a panel on peace and non-violence at the university in 2011 with the Dalai Lama.
James earned a doctorate in zoology from UA in 1970 and is considered one of the most highly regarded ornithologists and ecologists of the past 50 years.
(Copyright 2013 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.)


text:
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text:
Teams' fate will soon overshadow Ovie-Sid matchup
Updated: December 12, 2006, 2:23 PM ETBy Scott Burnside | ESPN.com
WASHINGTON -- Philosopher George Berkeley posed the ageless question: If a tree falls in a forest, and nobody's around, does it make a sound?
Berkeley must have been a hockey fan.
Indeed, he might have pondered what kind of noise results from the meeting of two of hockey's young titans in a sadly empty building.
Is it an echo or a whimper? Or is it a bang, regardless of how many empty seats there are?
With Alexander Ovechkin and Sidney Crosby meeting for the ...
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