MS Connection: Fall 2013 Edition

FALL 2013 SOUTH FLORIDA CHAPTER

MS CONNECTION NEWSLETTER

INSIDE THIS ISSUE

04SCHOLARSHIP AWARDEES

27MAKING HEALTH INSURANCE CHOICES

ANNUAL MEETING BIKE & WALK AWARDS CELEBRATION

page 02

06MS SERVICE DAY

10EXERCISE & THE BRAIN

02 MS CONNECTION: FALL 2013

www.nationalMSsociety.org/fls Email: [email protected]

Like us: facebook.com/ MS.southflorida

Follow us: @nmsssfla

Watch us: youtube.com/ MSsouthflorida

Join the Society’s new MS Connection online community and make meaningful connections when, where and how you want. Check out the new connected community at MSconnection.org today!

ANNUAL MEETING & AWARDS CELEBRATIONJoin the National Multiple Sclerosis Society for a festive evening at the Annual Meeting, Bike and Walk Awards Celebration! The event will take place on Thursday, October 3, 2013 at the BB&T Center from 6:00 – 9:00 pm.

• Hor’sd’oeuvresandcashbar

• AnnualMeeting

• Electionof2014BoardofTrustees

• AwardPresentation

• Musicandfun!

RSVPisrequired:Call1 800 FIGHT MS (800-344-4867) or visit www.nmssfls.org by Friday, September 27, 2013. If you cannot attend but would like to vote by proxy, please complete proxy form online at www.nmssfls.org. You must be 16 or older to participate.

This event is largely underwritten thanks to the generous supportofthePresentingSponsor:Genzyme,aSanofiCompany.

South FloridaChapter

CONNECT WITH US ONLINE:

03NATIONALMSSOCIETY.ORG | 1-800-344-4867

NATIONAL MULTIPLE SCLEROSIS SOCIETYTel:(954)731-4224 Fax:(954)739-1398

South Florida Chapter 3201 West Commercial Blvd. Suite127 Ft Lauderdale, FL 33309

Chairman: Fred Zuckerman Vice Chairmen: Joey Epstein EdPozzuoli Secretary: DiannGeronemus Treasurer: Richard Cascio Chapter President: Karen Dresbach Editor: Jolene Caprio

Information provided by the Society is based upon professional advice, published experience and expert opinion. Information provided in responsetoquestionsdoesnotconstitutethera-peutic recommendations or prescriptions. The National Multiple Sclerosis Society recommends thatallquestionsandinformationbediscussedwith a personal physician.

The Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The Society assumes no liability for the use or contents of any product or service mentioned.

The National Multiple Sclerosis Society is dedi-cated to ending the devastating effects of MS.

© 2013 National Multiple Sclerosis Society, South Florida Chapter

NATIONAL MULTIPLE SCLEROSIS SOCIETY AFFILIATED MS CENTERSFort Lauderdale MS Center Director: Brian Steingo, MD Tuesdays 9:00 am to 5:00 pm 572 East McNab Road PompanoBeach,FL33060 (954)738-1700

Neuroscience Consultants Comprehensive MS Center Founding Medical Director, Emeritus: Dr.HowardZwibel,MD Director Clinical Affairs: CarlosRamirezCalderon,MD Associate Medical Director: Bertha C. Fonseca, MD Mondays8:30amto1:00pm Thursdays8:00amto3:30pm 4601PoncedeLeonBlvd.Ste.100 CoralGables,FL33146 (786)219-3145

South Broward MS Clinic Director: Islon Seliger, MD Thursdays 9:00 am to 5:00 pm 12596PinesBlvd,PembrokePines,FL33027 (954)437-4000

University of Miami MS Center of Excel-lence Department of Neurology Miller School of Medicine Director of Clinical Neurology: Kottil W. Rammohan, MD 8:00amto5:00pm 1150NW14St,Miami,FL33136 (305)243-6732


PROGRAMS

2013 SCHOLARSHIP AWARDEESThe South Florida Chapter of the National MS Society awarded 6 recipients of its annual ScholarshipProgram,includingoneTopScholar who will receive a scholarship through the Society’s national office.

The program helps students affected by multiple sclerosis pursue a college or technical school education. It is open to high school seniors who live with MS or have a parent who does; or anybody living with MS who has notyetbeentoapost-secondaryschool.

The 2013 MS scholarship recipients include:

Ryan Grimm BishopVerotCatholicHighSchool University of Central Florida Electrical Engineering

GimmwashonoredasaTopScholarbytheNational MS Society

Kimberly Carrero Alexander W. Dreyfoos School of the Arts University of Florida Occupational Therapy

Austin Gomez WestBrowardHighSchool University of Tennessee – Knoxville Mechanical Engineering

Ryan Haft SpanishRiverHighSchool Florida Atlantic University Political Science

Jessie Haus DeerfieldBeachHighSchool University of Colorado at Boulder Film Studies

Jessica Kassner SaintThomasAquinas Villanova University Chemistry, Chemical Engineering or Pharmacy

Scholarship applications for the 2014 awards will be available October 1, 2013. For detailed guidelines and application information contact Suhaill Ruano at (954) 731-4224 or email [email protected].


PROGRAMS

2013 MEN’S DAY EVENTS The first of two Men’s Day events was heldon June 18th at the Improv Comedy ClubinWestPalmBeach.Guestslaughedthedayawaythankstostand-upperformancesbytheImprov’s own comedians.

Thank you to the Improv Comedy Club whose generous support helped make this event possible.

The second Men’s Day event took place on August 24th at the Broadway Palm DinnerTheater in Ft. Myers, complete with a theatrical performance of Burt and Me.

Both Men’s Day events included food, fun and special educational presentations, courtesy of Dr.CondeandDr.Mintz.

Visit us online at www.nmss.org/fls to view pictures of the Men’s Day events.

EDUCATIONAL TELECONFERENCE SERIES 2013Tuesday, September 10, 2013 7:30-8:30p.m.

Research: Where Are We Now, Where Are WeGoing?LatestupdatesinMSresearchandwhatisonthehorizon.

For more information or to register pleasecall1-800-344-4867,option1.Registration is free.

Knowledge Is Powerisasix-week,free,at-home educational program for people who are newly diagnosed. Mail or email formats. Toregister,call1-800-344-4867,orvisit www.nationalMSsociety.org/knowledge.

Join the Society’s new MS Connection online community and make meaningful connections when, where and how you want. Check out the new connected community at MSconnection.org today!


PROGRAMS

MS SERVICE DAY Our 2nd annual MS Service Day was held this spring. Teams of volunteers and staff descended on a home in South Florida, owned by a National MS Society member affected by multiple sclerosis, which was in great need of repair.

Our team reformed the home from top to bottom, inside and out in order to make the home safer and make daily living more manageable. The home improvement project included installing grab bars, fixing the airconditioning, deep cleaning and hanging new energy efficient curtains through the home, painting the inside and outside of the home

“THANK YOU SO MUCH FOR SAVING ME WHEN I WAS DROWNING. FIXING THINGS AROUND THE HOUSE WAS NOT A PRIORITY. I WAS SO BUSY TRYING TO SEE, HEAR, WALK, TALK, EAT, THINK, INJECT, AND KEEP UP MY EMOTIONAL STRENGTH. I COMPLETELY LET GO OF MY LITTLE HOME. YOU ALL CAME WITH THE TROOPS, PULLED ME OUT AND PUSHED ME UP TO THE LIGHT. I AM SO BLESSED TO HAVE YOU IN MY LIFE. ALL OF US WITH MS ARE TOUCHED BY YOUR LOVING HEARTS.” - GRACE


and landscaping the front and back yard.

Some people with MS experience fatigue and / or limited mobility. Keeping up with daily household maintenance can be challenging and overwhelming. The goal of MS Service Day is to make life easier for someone living with MS by making much needed improvements to their home.

We would like to give a special thanks to George Fowler and his wonderful team ofvolunteers from Fowler and Sons Construction, MiamiDolphinsSpecialTeams,O-GeePaintand Home Depot in Miami for generouslydonating numerous gallons of paint, materials and cleaning supplies for this year’s MS Service Day.

COULD YOUR HOME USE IMPROVEMENTS IN 2014?

If you would like us to consider your home for improvements or if you would like to nominate afriendorlovedoneforthe2014MSServiceDay program, download an application or nomination form from our website or email a [email protected].

The deadline to submit applications is December 31, 2013.

Finally, please contact Jaime Valdivia at [email protected] if you are interested in volunteeringforMSServiceDayin2014.

Check out the National MS Society at MS Service Day on this news clip:

http://mms.tveyes.com/NetReport.aspx?ReportHash=2c86eb725f69c35077398bd7d3d042b8

A neurologist in New York sees it and changes how she talks to her patients.

A woman in Sacramento shares how her doctor telling her to be more positive really pissed her off.

Print PSA-Vicky-DrClare-8.5x5.5_Final.indd 1 6/29/12 9:46 AM


PROGRAMS

WOMEN’S RETREATDAMES & DOLLS

The 1920’s came roaring back at this year’s Women’s Retreat event, held on July 19 through July 21 at the Renaissance PlantationHotel.

Women from all over South Florida enjoyed

a weekend of pampering, wellness programs – includingaquatics,taichiand“laughteryoga”– and social events. In addition, experts hosted educational workshops such as a First-Timermeeting, Nutrition and MS, Understanding Social Security and MS Resiliency.

WealsohadapackedhousefortheGirlTalkpanel,whereguests’questionswerethoughtfullyanswered by a neurologist, a nurse practitioner, an optometrist and a psychologist.

The weekend culminated with a huge party and

impressivecostumecontestatthe“Speakeasy”on Saturday night.

Visit us on Facebook at www.facebook.com/MS.southflorida to view pictures of all the glamorous dames and dolls enjoying this year’s unforgettable retreat.

A special thank you to our general session sponsor:


RESEARCH

MAKING ADVANCES IN PEDIATRIC MSAn increasing number of medical centers across the United States are collaborating on research on how and why multiple sclerosis happens in young people. Their work is already yielding valuable information on early MS triggers.

A COLLABORATIVE APPROACHThe Network of Pediatric MS Centers wasinitiated in 2006 through a grant from the National MS Society. Thanks to its multidisciplinary approach, researchers at participating institutions are gathering important data on the disease.

“We have been able to unravel key features,such as distinct characteristics of the disease on the MRI and in the spinal fluid of patients youngerthan11,”saysEmmanuelleWaubant,PhD,professorofNeurologyandPediatricsatthe University of California – San Francisco (UCSF), which is currently running a largestudy aimed at unraveling the triggers of pediatricMS.[Seeboxatright,“WhattriggersMS?]

Thus far, the network has learned that MRIs of patients under 11 show larger and more poorly definedMS scars compared to adults,

and that MS scars in young patients often go away within a few months, which is very rare in adults. They also observed that the spinal fluid of young patients can show more inflammation than in adults.

These findings have helped make the wayforwardclearer.“Nowthatthesedistinctfeaturesin younger patients have been identified,accurate diagnosis in children with MS is made easier, and early treatment can better prevent disabilityonset,”saysDr.Waubant.

To learn more about pediatric MS and research inthefield,visitwww.nationalMSsociety.org/pediatricMS.

OriginallypublishedintheGatewayChapter’sMSConnection newsletter.

WHAT TRIGGERS MS?

TheNetworkofPediatricMSCentersiscurrentlyrecruiting640childrenwithrelapsing-remittingMSorclinicallyisolated syndrome (a single episode of MS-likesymptoms)and1,280childrenwithout MS for a multiyear study to determine risk factors for developing MS.“Weexpectthestudywillprovideprecious pieces of information on risk factors for MS in general, and maybe help develop new treatments or preventative strategies,”saysleadinvestigatorEmmanuelleWaubant,PhD.Formoreinformation about participating, and the 13 participating locations, contact janace.hart@ucsf@eduorcall(415)514-2476.


RESEARCH

EXERCISE & THE BRAINBYBRUCEBEBO,PHD

Emerging evidence across the board suggests thatexercisedoesn’tjustkeepusphysicallyfit,ithelpsourbrainfunctionbetter,too.Scientific presentations on exercise, rehabilitation and qualityoflifeissuesattheAmericanAcademyofNeurology’s annual meeting in March suggest this holds true for people living with multiple sclerosis, as well.

EXERCISE’S GOOD EFFECTSA small study from National Multiple Sclerosis Society-supported scientists at the Kessler Research Institute in New Jersey found that 30 minutes of aerobic exercise done three times a week over three months improved memory and increased the volume of the hippocampus, a part of the brain involved with memory. These preliminary results will hopefully encourage furtherstudiesthatwillyieldmoredefinitiveconclusions and maybe even recommendations.

Anotherstudyexaminedthepotentialoflonger-term aerobic exercise to build endurance in people with MS. This study involved 60 people split into two groups: people who experienced fatigue and people who did not. Both groups performed individualizedenduranceexercisesusingtreadmills.

After six months, both groups showed improved oxygen consumption.However, thosewhostarted out with fatigue showed improvement in their fatigue scores, but it took at least nine months of the program to see a difference. So while you may not feel the effects of exercise at first,persistencecanpayoff!

WHILE YOU MAY NOT FEEL THE EFFECTS OF EXERCISE AT FIRST, PERSISTENCE CAN PAY OFF!

EXERCISES FOR THE BRAINSome very interesting data illustrating how thebrainreorganizestoadapttoMSdamagewas presented by a research team from the San RaffaeleHospital inMilan, Italy.This team

WHAT’S GOOD FOR THE BODY MAY BE GOOD FOR THE BRAIN

11 MS CONNECTION: SPRING 2013

RESOURCESFor more on cognitive issues and MS, visit nationalMSsociety.org/cognition. To learn more about exercise and MS, visit nationalMSsociety.org/exercise, or call 1-800-344-4867tofindoutaboutexerciseprograms in the area.

lookedattheimpactsofa12-weekcomputer- assisted course that focused on training to increase memory and attention (the course was previously reported to improve attention and executive thinkingabilities).UsingfunctionalMRI,which allowsareal-timeglimpseofthebrainatwork,they found indicators that brain activity had increasedinspecificareas.Thisimprovementappeared to persist at least six months after the training was completed.

Researchers from Milan and from Kessler also reportedthatpeoplewithMSwithmore“brainreserve”(largerbrainsize)andmore“cognitivereserve”(increasingtheabilitytowithstandorpostpone MS-associated decline in cognitionwithactivitiessuchasdoingpuzzlesorplayingmusic)wereatlowerriskforcognitivechangesassociated with brain lesions. Even when brain sizeisaccountedfor,thosewithmorecognitivereserve appear to have lower risk for cognitive changes.

There’snothinganyofuscandoaboutthesizeof our brains. But growing evidence suggests that people may be able to build cognitive reserve

by engaging in enrichment activities (Words withFriendsanyone?).It’sexcitingtothinkthat actions we can take, such as some mental and physical training, can actually alter brain circuits, improve brain activity and possibly help slow the progression of MS.

IT’S EXCITING TO THINK THAT ACTIONS WE CAN TAKE, SUCH AS SOME MENTAL AND PHYSICAL TRAINING, CAN POSSIBLY SLOW THE PROGRESSION OF MS.

Summaries of the meeting can be viewed on the AAN’s website at www.abstracts2view.com/aan, or visit www.nationalMSsociety.org/research for anoverviewofMS-related researchpresentedat the meeting. n

BruceBebo,PhD, isassociate vice president of Discovery Research at the National MS Society, and was previously a research immunologist focusing

ontheinfluenceofsexhormonesonMS.Heisa passionate Society volunteer, fundraiser and advocate, fueled in part by the fact that his mother has lived with MS for more than 30 years.

Read more of Dr. Bebo’s blog posts about research presentations at the annual AAN meeting at blog.nationalMSsociety.org, where this was originally published.


RESEARCH

CLINICAL UPDATE NATIONAL MS SOCIETY JOINS WITH THE NATIONAL INSTITUTES OF HEALTH TO FUND A MAJOR TRIAL OF A RE-PURPOSED THERAPY IN PROGRESSIVE MS

Investigators at the Cleveland Clinic Foundation are launching a phase II clinical trial of ibudilast, anoral anti-inflammatory agent, in250 people with progressive forms of MS. The study is principally funded by NeuroNEXT Network, a clinical trials initiative of the NationalInstitutesofHealth,withadditionalsupport by MediciNova, the company that will supply ibudilast.

The National MS Society actively advocated forthisuniquelycollaborativetrial,andisalsoproviding funding support because it aligns with the Society’s strategic focus on progressive MS, and may answer important questionsabout the best ways to measure the benefitsof therapies aimed at protecting the nervous system from MS. The trial will be conducted at 28sitesacrosstheU.S.undertheleadershipofPrincipalInvestigatorRobertFox,M.D.,M.S.,FAAN, Staff Neurologist at the Mellen Center for Multiple Sclerosis at Cleveland Clinic.

The National MS Society will provide additional information about how to volunteer for this trial when the centers are ready to begin recruiting participants.

“Thereisasignificant,unmetneedfortreatmentsthatcanbenefitpeoplewithprogressiveformsof MS,” said Timothy Coetzee, PhD, ChiefResearch Officer of the National MS Society. “This clinical trial of ibudilast will provideimportant information on a potential way to stop MS damage, as well as how to measure treatment benefits, and aligns well with theSociety’s research agenda for stopping MS progression.”Thiscouldleadtoshorter,moreeffective trials and the potential for getting new therapies to people with MS faster.

Dr. Fox and his colleagues at Cleveland Clinic will collaborate with co-investigators at 28academic medical centers in the NeuroNEXT Network. The trial is expected to requireapproximately three years for enrollment, treatment, and data analyses. The trial will be recruitingindividualswhohaveeitherprimary-progressive MS or secondary-progressive MSandwhomeet specific entrance criteria. Likethe Society’s previous investment in a clinical trial of estriol, this trial is an example of how the Society can join with multiple partners to facilitatetestingofan“ontheshelf ”therapyinpeople with MS.

Our VisiOn: A world free of multiple sclerosis

Our research Fundraising gOal: We will raise $250 million for MS research by the end of 2015

Our research gOal: We are a driving force of MS research and treatment to:

sTOP: We must stop all disease activity and prevent further progression for people already living with MS

resTOre: We must restore all function that has already been lost to nervous system damage from MS

end: We must work to completely eradicate MS and prevent it from ever occurring in the future

STOPPING THE DISEASE RESTORING WHAT’S BEEN LOST ENDING MS FOREVER



13 MS CONNECTION: SPRING 2013

RESEARCH

PROGRESS AT AAN MEETINGOver 12,000 neurologists and other researchers gathered in San Diego in March to share the most up-to-date research on treatingneurological diseases such as multiple sclerosis at the annual American Academy of Neurology’s (AAN)meeting.

Hereareafewhighlightsfromthemorethan500MS-relatedpresentationsthatfocusedonstopping MS, restoring function and ending MS forever.

STOPPING MSProgressive MS

A small study of an oral blood-pressuremedicine, Amiloride, found a reduction of brainshrinkageassociatedwiththediseasein14peoplewith primary-progressiveMS. Furthertesting in a larger study is now underway. Researchers in a large trial of Gilenya forprimary-progressiveMSreportedgoodprogressin setting up the trial. This is one of several ongoing large studies in progressive MS.

MS Therapies

Resultsofastudyonpeginterferonbeta-1a(anew formofAvonex)designed to stay in thebody longer than the standard form suggest that peginterferon injected every two or four

weeks was effective in reducing relapse rates and the risk of progression of disability. The study is continuing into a second year and the trial sponsor Biogen Idec has announced plans to apply for FDA approval later this year. Another one-yearphaseIIItrialfoundthatinjectionsoftwice the standard dose of glatiramer acetate (Copaxone) taken three times per weekwereeffectiveinreducingrelapsesandMRI-detecteddisease activity, with no unexpected safety issues.

A large study in France (ENIGM) foundthat among 200 people who switched from natalizumab(Tysabri)tofingolimod(Gilenya),32%experiencedarelapseduringthe“washout”interval of 3 to 6 months when no therapy was given. The researchers concluded that switching increases the likelihood of disease reactivation and that the washout period should not be longer than 3 months.

Results of two phase III trials of oral dimethyl fumarate(Tecfidera),approvedbytheFDAinMarch, suggest that the treatment begins to take full effect after three months’ use. This

PROFESSOR EBERS, CENTER, RECEIVES THE JOHN DYSTEL PRIZE FROM DRS. TIMOTHY COETZEE AND BRUCE COHEN


effectwassustainedoverthetwo-yearspanofthe trials.

Several presentations focused on results from extension phases of completed clinical trials inrelapsing-remittingMS.Toreadmore,visitwww.nationalMSsociety.org/2013AAN.

Exploring disease activity

An Argentinian study on whether vaccinations can trigger MS attacks found that yellow fever vaccines may substantially increase the risk of MS relapse; therefore, people with MS planning a trip to a region with an increased risk of yellow fever should discuss the risks and benefitsofvaccinationwiththeirdoctor.

A small study in Louisiana found that people with higher levels of glucose were more likely to have higher levels of disability. This important lead needs more study to prove a role for blood sugar in MS progression.

A few studies focused on ways to track disease progression,includingonethatanalyzedserumsamples from people with MS who were taking glatirameracetate(Copaxone).Theresearcherswereable tofindantibodyprofiles thatcoulddetect those who responded to therapy and those who did not. Dr. Nicholas LaRocca of the National MS Society described efforts of the newly formed MS Outcome Assessments Consortium to accelerate development of more effectivetreatmentsforMS.Theywillanalyzedata from completed MS clinical trials and other studies and work with regulatory agencies to qualify a new outcome measure that canmore sensitively track the impact of therapies

on disease disability and progression in future trials.

RESTORING FUNCTIONSeveral studies focused on the benefits ofexercise for brain function and MS symptoms such as fatigue, while others looked at how the brain can adapt to MS damage. To read blog posts by MS researchers on these and other studies, visit blog.nationalMSsociety.org.

AstudyonCCSVIdidnotfinda significantdifference between 61 people with MS and 20 people without MS when technicians trained in CCSVI assessment used various ultrasoundtechniquestodetectthecondition.Thefirstresultsofanotherstudyofcontrolledendovascular treatment at six months found no adverse events, but also no sustained improvement in venous outflow.

ENDING THE DISEASE FOREVERSeveral reports focused on risk factors for MS, including one indicating that dietary salt may stimulate activity of key immune cells involved in MS attacks. Read more at www.nationalMSsociety.org/dietarysalt.

For his extensive work on understanding MS, including the importance of genetic factors in who develops the disease and how genes interactwith environmental factors,ProfessorGeorge Ebers was this year’s recipient of theJohn Dystel Prize for MS Research, givenjointly by the Society and the AAN.

ReadscientificsummariesontheAAN’swebsiteat www.abstracts2view.com/aan.


EVENTS

BIKE MSThe2013ZimmermanMSBikeRidePresentedby Mack Cycle and Fitness boasted over 1,300 registrants.Participantstraveledfrom38statesand 5 countries to cycle the new route from FIU’s Modesto A. Maidique Campus to theluxurious Key Largo Resorts. Among the riders was #1 fundraiser, Keith Rosen, celebrating his fourthappearanceinthe“Top5”infiveyears.Joining Keith on the route were great teams from corporations, such as, DHL, AdvancedRoofing, G4S, American Express, Microsoft,and Barcardi. Friends and Family team, Leslie’s Angels, made a huge impact in 2013. Congratulations and sincere thanks to all Bike MS participants and volunteers!

Please mark your calendars for the 2014Bike MS: Breakaway to Key Largo. Cooler temperaturesawait!The28thinstallmentoftheevent will be held on March 1st and 2nd. Visit www.msbikeflorida.org for more information and to register.

Jason Swift - Chair Rafael Acosta Mike Blatt Delio Botero Merritt Burrus Karon Clark Michael Connor Ernesto Diaz Clayton Faulk David Fernandez Keith Fowee Malena Vareles Gene Giblin

Matt Ginn Larry House Racquel House Michael Rafidi Sean Rezai David Rosenbleeth Kevin Scanlon Paul Schloneger Chris Shield Alan Steel Greg Haley Michelina Witte Wayne Zimmerman

2013 BIKE MS COMMITTEE


Mack Cycle and Fitness Bacardi Team Storm Riders Weston Velo Mission MS AdvancedRoofingTarPeddlers/SolarSprockets Microsoft DHLPedalonforaCure Team Canada Fights MS G4S Leslie's Angels Cycle World Miami

NeverGiveUp zMotion Manny's Fannies TeamHolman Cycle Counters American Express Centurions Citco Subway/IPCBikeTeam Mission Remission MicSuz Team Jarden TeamCHS

2013 BIKE MS TOP 25 TEAMS

Keith Rosen Robert Kornahrens Bill Sanderson Joey Bonomo GermanAgudelo MichaelHogsten GarySmith Helen-Eleni Sonenreich DavidScottMcGuire ClaudetteHalluk Charles Martin Chris Walters

David Buck Marie-LisetteFlores RobertSchwartz Drew Schnitt Tamara Stone GeorgeWilson John Wrench Jonathan Berman Ron Jones RexHamilton Coke Coakley GerryCullen

2013 BIKE MS TOP 25 INDIVIDUALS


EVENTS

WALK MSThisspring,morethan3,800walkersinSouthFlorida joined together at 7 Walk MS events. Supporters included people with MS, friends, family,co-workersandneighborswhojoinedthefightagainstMS.ThisyearWalkMSraised$850,000.Thankyoutoeveryonewhoparticipated,donatedandvolunteered.Hugethanks to the Title Sponsor, United Automo-bileInsuranceCompany(UAIC).Forthesecond year, UAIC sponsored Walk MS and participated in the walk. MIA Shoes spon-sored the Champions Against MS Tent, a tent for someone with MS to learn about pro-grams, receive a goodie bag and a Champions AgainstMSt-shirt.

Every step and dollar raised was supported by our volunteers. Serving breakfast, directing parking, cheering at rest stops and cleaning up after the walk are all important tasks. The 2013 Walk MS was a success and we depend

CAN’T WAIT FOR WALK MS 2014? WalkMS2014registrationwillopenthisfall.Visit www.mswalksouthflorida.org to register.

Walk 2013

Aventura EstrellaMitrani-Co-ChairJaneMatthews DougBonds–Co-Chair JoeMaya Andrea Aghlaghanian Marlene Ruber DianaBustillo LuisYepez Barbara Liebmann

Boca Raton JodiRothman–Chair GerryCohen Mitchell Cohen Sandy Segal Billie Cohen Andrew Tharp Dale Cohen Al Witko

Coral Gables VanessaBedoya–Chair MelissaLorenzo Jessica Ashbaugh Jose Rivas Felix Roberta Brambilla Oliana Torres Bryan Cereijo Adam Vega JoseGarcia-Tunon

2013 WALK MS COMMITTEES

February 22, 2014

Lee County Naples

February 23, 2014

Fort Lauderdale ThePalmBeaches

March 23, 2014

Aventura Boca Raton

April 5, 2014

CoralGables

on everyone to continue making a difference inthecommunityandfindingacure.Thankyou for every step you take.


Fort Lauderdale DrewGaut RachaelSherman DebGiblin-Davis NoreenNejaz Stacy Jacobs Deanna Sylvestri

Lee County TonyaEmerson-Chair LauraCrabtree SueArend-Baxter CathyKennedy Denise Baxter Melody Dennis Clinton Baxter Barbara Walthier Virginia Cesta

Naples LisaOsborne-Chair PamOsborne Dr. Jim Croley Erin Osborne Christy Doyle Stephen Osborne Amy Frerichs Ian Russell

Palm Beach AngelaAcevedoMartin HerbertHartman Anna Carter Iveth Thompson Molly Connell Alexis Villwock

Best Corporate Teams ARA March Madness Seaboard Team Carrie’s Knights Marc MS Angels McDonald&OsbornePA TeamB&P Team UAIC

Best Friends and Family Team Team WIlliams Island Team Alie CDC Builders Kathy’s Sole Mates Stepping Ashore GoGoWalkers After 6 for a Cure

Most Improved Team Team UAIC Team Erin Unplugged MSJSquadVII Carrie’s Knights The MS Stompers TEAM ROSE! JC & the Sunshine Clan

Best Rookie Team Bloomingdale’sPartnersinTime ARA March Madness Believe in Miracles Team Rudy Stepping Ashore Team Doyle Team DRY

Best School Team Team ACES Team Everglades Christopher Columbus PembrokePinesCharterMiddle SuncoastHighSchool Computer Club

WALK MS SPECIAL AWARDS


SUPPORT GROUPS

BROWARD COUNTYNMSS Coral Springs Afternoon Group For individuals with MS only The purpose of this open ended group is to educate members about the newest treatments forMS.Groupmemberswillalsodiscusscopingmechanisms for those in our lives who do not have MS and don’t always understand MS. *Speakers/Specialists will be announced by SupportGroupLeader(s) 3rd Tuesday of month, 1:00 pm Bring a bag Lunch&Socialize1:45pmmeeting Coral Springs Medical Center Community Education Center 3100CoralHillsDrive Coral Springs, FL 33065 Facilitators: CindeeHorowitz:(954)345-2332 [email protected] MichaelMyette:(954)227-4738 [email protected]

COLLIER/ LEE COUNTYNMSS Naples Group (Social Group) The purpose of this open ended group is to establish connection with other members who have a MS. 1st Monday of Month, 3:30 pm BriggsWellnessCenter-BriggsConferenceRoom,2nd floor by Subway 399 Ninth Street North Naples,FL34102 *Grouplocationmayvarydependingonmonth.PleasecontacttheLocalContactforconfirmationon location. Local Contact: JaniceBronsteinat(239)774-7619 National MS Society Contact : Tanya Dannibale: (239)793-7009 [email protected]

NMSS Cape Coral Day Group The purpose of this open ended group is to discuss the variability of MS journeys, newest medications, and preparedness with a person living with MS in South Florida through discussions and guest speakers. Speakers/Specialists will be announced by Support GroupLeader(s) 1st Sunday of month, 3:00 pm 636DelPradoBlvd.South Room A Cape Coral, FL 33990 DaveLane:(239)652-3602 [email protected] MarthaHannigan:(239)310-6866 [email protected]


NMSS Ft. Myers Evening Group The purpose of this open ended group is to discuss the variability of MS journeys, newest medications, and preparedness with a person living with MS in South Florida through discussions and guest speakers. *Speakers/Specialists will be announced by SupportGroupLeader(s) 3rd Thursday of month, 5:00 pm St.HilaryEpiscopalChurch 5011McGregorBlvd. Fort Myers, FL 33901 DaveLane:(239)652-3602 [email protected] KarenHart:(239)209-7549or(239)400-0529 [email protected] Social luncheon held 1st Thursday of month ContactKarenHartfordetails

MIAMI DADE COUNTYNMSS Miami-Dade Spiritual Support Group Personsofallfaithswelcome The purpose of this open ended group is to empower the members through positive messages, educate on health and wellness, and develop anger management skills with assistance through spiritual guidance. *Speakers/Specialists will be announced by SupportGroupLeader(s) 2nd Thursday of month, 6:00 pm DoctorsHospital 5000 University Drive CoralGables,FL33146 GototheChapelonthesecondfloornearElevator A ChaplainRonaldGaudio:(786)308-3800 [email protected]

NMSS South Miami-Dade Evening Group The purpose of this open ended group is to

discuss daily obstacles and how to cope with these obstacles as a result of MS. *Speakers/Specialists will be announced by SupportGroupLeader(s) 2nd Thursday of month, 7:00 pm Doctors’Hospital-Cafeteria 5000 University Drive CoralGables,FL33146 MariaZaldivar:(305)710-2210 [email protected] KirstieBray:(305)984-7501 [email protected]

NMSS Miami Beach Group The purpose of this open ended group is discussing common ailments as a result of MS and developing coping skills. *Speakers/Specialists will be announced by SupportGroupLeader(s) 1st Tuesday of month, 7:00 pm Mt. Sinai Medical Center Founders Conference Center 1st Floor, Warner Bldg. 4300AltonRoad MiamiBeach,FL33140 GladysFernandez:(305)534-8848 [email protected] EllieKleinCardonne:(305)322-2299 [email protected]

Café con Leche ConversationandSupportforPeoplewithMultiple Sclerosis

National Multiple Sclerosis Society offers once a month a telephone support group in Spanish 2ndTuesdayoftheMonth,2:00-3:30pm Formoreinformationortosubscribecall1-800-344-4867,option3


PALM BEACH COUNTYNMSS West Boca Evening Group The purpose of this open ended group is to discuss the common symptoms as a result of MS, diet and nutrition, medication and side effects,combatingfatigue,keepingorganizedandhandling other health issues with MS. *Mustcallore-mailSHGleadertoRSVPandreceiveconfirmationonmeeting *Speakers/Specialists will be announced by SupportGroupLeader(s) 1stWednesdayofmonth,6:45pm West Boca Medical Center 21664StateRoad7 BocaRaton,FL33428 Doctors’ Dining Room ClaudiaErdman:(561)483-4257 [email protected]

NMSS North Palm Beach Group The purpose of this open ended group is to discuss wellness programs, common symptoms as a result of MS and how to cope with these symptoms. *Speakers/Specialists will be announced by SupportGroupLeader(s) 2nd Monday of month, 6:30 pm Borland Center 3885PGABlvd. PalmBeachGardens,FL33418 NancyDecker:(561)622-4606

NMSS Boynton Beach Group The purpose of this open ended group is to discuss the unpredictability of MS and how to cope with the symptoms as they arise through educational speakers and group discussions. *Speakers/Specialists will be announced by SupportGroupLeader(s) 2nd Tuesday of month, 7:00 pm

HagenRanchRoadPublicLibrary 14350HagenRanchRd. DelrayBeach,FL33446 JimMontgomery:(561)740-7867 [email protected] EliotReinstein:(561)302-6913 [email protected]

Palm West MS Support Group The purpose of this open ended group is to discuss daily obstacles and how to cope with these obstacles as a result of MS. *Speakers/Specialists will be announced by SupportGroupLeader(s) 3rd Monday of Month at 6:30 pm 960 South State Road 7 Wellington,FL33414 Meeting room in Total Wine HowardChiet:(561)795-5233 [email protected]


EVENTS

RUN TO STOP MSThe third year proved to be a charm for the 2013 Coral Gables MS 5K Run. This wasthemost successful year yetwith almost 400runners raising over $27,000. The 5K Run is a 3.1milestimedeventthatstartsandfinishesatMerrickParkwithascenicroutethroughthesurroundingareasofGranadaGolfCourse.

Thetop3finishersineachagegroupreceiveda medal and the overall top 3 male and female winners receivedaplaqueandgift certificatesfrom The Florida Running Company. The kids also had their fun by participating in our 1/4mileKidsFunRun and eachparticipantreceived a medal for competing. Thank you to all who dared to Run to Stop MS.

TOP 5 TEAMS Team KT Bugg TeamParadise Team Kotler BaconForPresident Team Daly

TOP 5 INDIVIDUALS Chelsea Krueger Dale Kotler Julianna Lessor Mike Silver Cristina Estepe


EVENTS

CHALLENGE WALK MSCHALLENGE: WALK 50 MILES OVER 3 DAYS.

ACCEPTED BY: THE SOUTH FLORIDA STEPPERS.

South Florida was well represented at the 2013 Challenge Walk MS in Charleston, South Carolina. The South Florida Steppers included NoreenNezaj, JaneGarceau, Lisa Sculnick, EstrellaMitrani,MariaDuarte, Valerie George and Gjyle Nezaj. This unforgettable 3 dayweekendbeganinHistoricCharlestontravelingthroughsomeofthemostscenicandbeautifulareas,finishing inIsleofPalms.Through-out the 50 miles, walkers overcame obstacles along the way like cold weatherandblisters.Theirpassionanddriveguidedthemtothefinish

line. The moment to never forget was when all walkers and volunteers walked the last mile together.

We are truly proud of our Challenge Walk MS participants for representing South Florida and for truly accepting the Challenge!

Registrationiscurrentlyopenforthe2014ChallengeWalkMS:February28–March2,2014.Formoreinformation,[email protected].

Aliewasdiagnosedwithmultiplesclerosisattheageof14.Shereceivestheutmostcareandmedications from her doctors to help slow the progression of her disease. Alie is living her life to the fullest while in college!

AlieformedAlie’sFundforChildrenwithMSinordertoprovidefundstochildrenages2-22who live throughout the country with MS. The funds help defer medical and educational costs, counseling and other services to ensure a brighter future for those impacted with MS.

If you are interested in applying for assistance from Alie’s Fund for Children with MS, please contact the ProgramsDepartmentat1800FIGHTMS;954-731-4224.DocumentationofyourMSdiagnosisandverificationofagewillberequired.


EVENTS

MS GOLF TOURNAMENT On Friday, May 17, 2013 teams hit the links at the exclusive Boca Largo Country Club, Boca Raton for the CBM of America, Inc. MSGolfTournament Presented by AutoNation. Each foursomewas paired with a celebrity and enjoyed an amazing day on achampionshipgolfcoursealongwithlunch,on-courserefreshmentsandapostgolfawardsreception.The tournament featured a longest drive competition, closest to the pin, straightest drive and silent auction.Withgreatappreciation,theMSGolfTournamentraisedover$80,000.

TheNationalMSSocietygreatlythanksthirdtimePresentingSponsor,CBMofAmerica,Inc.andchair, Stuart Kosh. A special thanks to all the sponsors and participants who contribute year after year to the success of the tournament.

2013 WINNERS• 1stPlace:MikeStephens,StuBrown,PaulSgro,LarryDezenzo

• 2ndPlace:ToddTemplin,GeorgeLee,ShaneKerr,DonWright

To joinnext year’sGolfCommittee and for informationon sponsorshipopportunities for2014,pleasecontactMonicaWhitingatmonica.whiting@nmss.orgor954-731-4224.

MS GOLF TOURNAMENTCBM OF AMERICA, INC.

presented by


THE NATIONAL MULTIPLE SCLEROSIS SOCIETY’S 31ST ANNUAL MS GALA LUNCHEON TO HONOR ALAN S. BECKER

Celebrate the 31st Anniversary with a fabulous day of fun and excitementattheNationalMSSocietyGalaLuncheon.JoinchairIlaDavidoffandhonoraryco-chairsDeborahDelPrete,

MonicaGoldsteinandCarrieSchulmanasthisspectaculareventtakesplaceattheBrowardCountyConventionCenteronWednesday,January22,2014.

GuestswillbeentertainedbyabreathtakingshowcreatedbyCirqueDreams.Themesmerizingandenergetic performance will make it a luncheon to remember.

TheMSGalaLuncheon raises funds thatwill aid in the researchprograms and services that theNational MS Society supports throughout the year. Be a part of this important day of celebration and recognition of honoree, Alan S. Becker.

TopurchaseticketsorbecomeasponsorpleasecontactMonicaWhitingat954731-4224ormonica.whiting@nmss.org.

VOLUNTEER CORNERThank you to all of the South Florida Chapter volunteers throughout the 2013 event season. We want to acknowledge you for contributing your time and efforts toward the mission. Volunteers play a vital role in the work of the Society, bringing new ideas and energy. Learn more about upcoming opportunities by visiting our volunteer page at nmssfls.org and clickon“volunteer.”

Does your company or school want to volunteer together as a group for the National MS Society?Youcanhelpatmanyofoureventsandprograms suchasWalkMSorBikeMS.Contact Jaime Valdivia at [email protected].


The National MS Society provides wellness programs to the MS community. You are in-vited to enjoy these classes free of charge. For more information contact:

Suhaill Ruano 1800FIGHTMS(800-344-4867) Email: [email protected]

BROWARD WELLNESS PROGRAMSCoral Springs Medical Center Tai Chi: Saturday at 2:00 pm ChairYoga:TuesdayandThursdayat12:45pm KathyByrne:(954)344-3344

Tamarac Community Center Tai Chi: Monday at 1:00 pm Chair Yoga: Tuesday at 11:30 am Meditation: Monday at 12:30 pm Rose:(954)597-3643

Yoga Rosa Special Needs: Tuesday & Thursday at 12:00 pm Yoga:MondayandWednesdayat8:30am,12:00 pm, 5:30 pm RosaSantana:(954)456-6077

Weston Yoga CallFabienneGrossmanforanappointment(954)871-5222

COLLIER/LEE COUNTYNCH Briggs Wellness Center Aquatics:Tuesdayat9:30am Yoga and Balance: Monday at 2:15 pm

Cape Coral Wellness Facility GentleYoga:Mondayat12:00pm Aquatics:TuesdayandThursdayat11:30am

Fort Myers Wellness Facility GentleYoga:TuesdayandThursdayat11:30am

MIAMI-DADETai Chi with Tony **ON HOLD**

PALM BEACHMae Volen Center 1515W.PalmettoParkRoad Boca Raton (561)395-8920 TaiChi:Friday12:00-1:00pm Yoga:Friday1:00-2:00pm

WELLNESS PROGRAMS

HELP US GO GREEN

RECEIVE THE MS CONNECTION ONLINE. CALL 1-800-344-4867 OR

954-731-4224 TO SIGN UP TODAY


MONEY MATTERS

MAKING HEALTH INSURANCE CHOICES Starting Oct. 1, most people who don’t already have health insurance will have new options for coverage when the Health Insurance Market-place—a component of the Affordable Care Act—begins enrollment for coverage to begin Jan.1,2014.

TheWeb-basedHealthInsuranceMarketplaces,(sometimescalled“exchanges”)areanewwayofshopping for health insurance coverage, allowing people to compare plans, get tax credits and other costhelp.Theprogramalsoincludesgovernment-certified “navigators,”whoare experthealth in-surance counselors funded by the marketplaces to provide unbiased information, education and en-rollment help to consumers at no cost. Coverage through marketplace plans is guaranteed regard-less of pre-existing conditions, such asmultiplesclerosis, and covers preventive and needed care, suchasdoctor’svisits,hospitalizations,maternityleave, emergency room care and prescriptions.

All plans that participate in the marketplace have to show costs and what is covered in sim-ple, understandable language that allows people to make “apples to apples” comparisons be-tween plans. Enrollment begins October 1st at www.healthcare.gov. Call the Society at 1-800-344-4867 or visit www.nationalMSsociety.org/ACAkickin for more information.

WAYS TO GIVE

GIVE AT THE OFFICE Every year, people nationwide help create a world free of multiple sclerosis by contributing through their employer’s charitable giving campaign.

Most campaigns kick off in the fall, so if you’ve been looking for an easy and efficient way to join the movement, act now. Simply designate your annual pledge to the National MS Society. Your donation will be automatically deducted from eachpaychecktofundcutting-edgeresearchandprovide programs and services to help people af-fected by MS move their lives forward.

Federal government employees and military per-sonnel are eligible to participate in the Combined Federal Campaign (CFC), the nation’s largestworkplace giving program. If you participate in the CFC, designate your gift to the Society using CFC#11409.

If your company offers a workplace giving pro-gram, look for the Society listed under Commu-nityHealthCharities. If your employer doesn’toffer a giving program, talk to your benefits administrator or call us at 1-800-344-4867, option #2, to see if we can help.

National Multiple Sclerosis Society South Florida Chapter 3201 W. Commercial Blvd. Suite 127 Ft. Lauderdale, FL 33309

October 3, 2013 Annual Meeting and Award Celebration

January 22, 2014 MSGalaLuncheon

February 22, 2014 Walk MS: Lee County Walk MS: Naples

February 23, 2014 Walk MS: Fort Lauderdale WalkMS:ThePalmBeaches

February 28 – March 2, 2014 Challenge Walk MS

March 1 – 2, 2014 Bike MS

March 23, 2014 Walk MS: Aventura Walk MS: Boca Raton

April 5, 2014 WalkMS:CoralGables

Documents

MS Connection: Fall 2013 Edition