FALL 2013 SOUTH FLORIDA CHAPTER
MS CONNECTION NEWSLETTER
ANNUAL MEETING BIKE & WALK AWARDS CELEBRATION
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INSIDE 04 THIS ISSUE
SCHOLARSHIP AWARDEES
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MS SERVICE DAY
EXERCISE & THE BRAIN
MAKING HEALTH INSURANCE CHOICES
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MS CONNECTION: FALL 2013
South Florida Chapter
CONNECT WITH US ONLINE:
ANNUAL MEETING & AWARDS CELEBRATION
Email: FLS_Office@nmss.org
Join 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.
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Hor’s d’oeuvres and cash bar
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Annual Meeting
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Election of 2014 Board of Trustees
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Award Presentation
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Music and fun!
www.nationalMSsociety.org/fls
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!
RSVP is required: Call 1 800 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 support of the Presenting Sponsor: Genzyme, a Sanofi Company.
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NATIONAL MULTIPLE SCLEROSIS SOCIETY Tel: (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 Ed Pozzuoli Secretary: Diann Geronemus 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 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. 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 dedicated to ending the devastating effects of MS. Š 2013 National Multiple Sclerosis Society, South Florida Chapter
NATIONAL MULTIPLE SCLEROSIS SOCIETY AFFILIATED MS CENTERS Fort Lauderdale MS Center Director: Brian Steingo, MD Tuesdays 9:00 am to 5:00 pm 572 East McNab Road Pompano Beach, FL 33060 (954) 738-1700 Neuroscience Consultants Comprehensive MS Center Founding Medical Director, Emeritus: Dr. Howard Zwibel, MD Director Clinical Affairs: Carlos Ramirez Calderon, MD Associate Medical Director: Bertha C. Fonseca, MD Mondays 8:30 am to 1:00 pm Thursdays 8:00 am to 3:30 pm 4601 Ponce de Leon Blvd. Ste. 100 Coral Gables, FL 33146 (786) 219-3145 South Broward MS Clinic Director: Islon Seliger, MD Thursdays 9:00 am to 5:00 pm 12596 Pines Blvd, Pembroke Pines, FL 33027 (954) 437- 4000 University of Miami MS Center of Excellence Department of Neurology Miller School of Medicine Director of Clinical Neurology: Kottil W. Rammohan, MD 8:00 am to 5:00 pm 1150 NW 14 St, Miami, FL 33136 (305) 243-6732
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MS CONNECTION: FALL 2013
PROGRAMS
2013 SCHOLARSHIP AWARDEES The South Florida Chapter of the National MS Society awarded 6 recipients of its annual Scholarship Program, including one Top Scholar 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 not yet been to a post-secondary school. The 2013 MS scholarship recipients include: Ryan Grimm Bishop Verot Catholic High School University of Central Florida Electrical Engineering Gimm was honored as a Top Scholar by the National MS Society Kimberly Carrero Alexander W. Dreyfoos School of the Arts University of Florida Occupational Therapy
Austin Gomez West Broward High School University of Tennessee – Knoxville Mechanical Engineering Ryan Haft Spanish River High School Florida Atlantic University Political Science
Jessie Haus Deerfield Beach High School University of Colorado at Boulder Film Studies Jessica Kassner Saint Thomas Aquinas 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 suhaill.ruano@nmss.org.
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Knowledge Is Power is a six-week, free, athome educational program for people who are newly diagnosed. Mail or email formats. To register, call 1-800-344-4867, or visit www.nationalMSsociety.org/knowledge.
EDUCATIONAL TELECONFERENCE SERIES 2013 Tuesday, September 10, 2013 7:30 - 8:30 p.m. Research: Where Are We Now, Where Are We Going? Latest updates in MS research and what is on the horizon. For more information or to register please call 1-800-344-4867, option 1. Registration is free.
PROGRAMS
2013 MEN’S DAY EVENTS The first of two Men’s Day events was held on June 18th at the Improv Comedy Club in West Palm Beach. Guests laughed the day away thanks to stand-up performances by the Improv’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 Dinner Theater in Ft. Myers, complete with a theatrical performance of Burt and Me.
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!
Both Men’s Day events included food, fun and special educational presentations, courtesy of Dr. Conde and Dr. Mintz. Visit us online at www.nmss.org/fls to view pictures of the Men’s Day events.
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MS SERVICE DAY
MS CONNECTION: FALL 2013
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 air conditioning, 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
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and landscaping the front and back yard.
COULD YOUR HOME USE IMPROVEMENTS IN 2014?
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.
If you would like us to consider your home for improvements or if you would like to nominate a friend or loved one for the 2014 MS Service Day program, download an application or nomination form from our website or email a request to FLS.MSPrograms@nmss.org.
We would like to give a special thanks to George Fowler and his wonderful team of volunteers from Fowler and Sons Construction, Miami Dolphins Special Teams, O-Gee Paint and Home Depot in Miami for generously donating numerous gallons of paint, materials and cleaning supplies for this year’s MS Service Day.
The deadline to submit applications is December 31, 2013. Finally, please contact Jaime Valdivia at Jaime. Valdivia@nmss.org if you are interested in volunteering for MS Service Day in 2014. Check out the National MS Society at MS Service Day on this news clip: http://mms.tveyes.com/NetReport.aspx?Repo rtHash=2c86eb725f69c35077398bd7d3d04 2b8
A woman in Sacramento shares how her doctor telling her to be more positive really pissed her off. A neurologist in New York sees it and changes how she talks to her patients.
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PROGRAMS
WOMEN’S RETREAT DAMES & 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 Plantation Hotel. Women from all over South Florida enjoyed a weekend of pampering, wellness programs – including aquatics, tai chi and “laughter yoga” – and social events. In addition, experts hosted educational workshops such as a First-Timer meeting, Nutrition and MS, Understanding Social Security and MS Resiliency.
impressive costume contest at the “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.
We also had a packed house for the Girl Talk panel, where guests’ questions were thoughtfully answered by a neurologist, a nurse practitioner, an optometrist and a psychologist. The weekend culminated with a huge party and
A special thank you to our general session sponsor:
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RESEARCH
MAKING ADVANCES IN PEDIATRIC MS An 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 APPROACH The Network of Pediatric MS Centers was initiated 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 younger than 11,” says Emmanuelle Waubant, PhD, professor of Neurology and Pediatrics at the University of California – San Francisco (UCSF), which is currently running a large study aimed at unraveling the triggers of pediatric MS. [See box at right, “What triggers MS?] Thus far, the network has learned that MRIs of patients under 11 show larger and more poorly defined MS 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 way forward clearer. “Now that these distinct features in younger patients have been identified, accurate diagnosis in children with MS is made easier, and early treatment can better prevent disability onset,” says Dr. Waubant. To learn more about pediatric MS and research in the field, visit www.nationalMSsociety.org/ pediatricMS. Originally published in the Gateway Chapter’s MSConnection newsletter.
WHAT TRIGGERS MS? The Network of Pediatric MS Centers is currently recruiting 640 children with relapsing-remitting MS or clinically isolated syndrome (a single episode of MS-like symptoms) and 1,280 children without MS for a multiyear study to determine risk factors for developing MS. “We expect the study will provide precious pieces of information on risk factors for MS in general, and maybe help develop new treatments or preventative strategies,” says lead investigator Emmanuelle Waubant, PhD. For more information about participating, and the 13 participating locations, contact janace. hart@ucsf@edu or call (415) 514-2476.
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EXERCISE & THE BRAIN
MS CONNECTION: FALL 2013
After six months, both groups showed improved oxygen consumption. However, those who started 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, persistence can pay off!
BY BRUCE BEBO, PHD
Emerging evidence across the board suggests that exercise doesn’t just keep us physically fit, it helps our brain function better, too. Scientific presentations on exercise, rehabilitation and quality of life issues at the American Academy of Neurology’s annual meeting in March suggest this holds true for people living with multiple sclerosis, as well.
EXERCISE’S GOOD EFFECTS A 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 further studies that will yield more definitive conclusions and maybe even recommendations. Another study examined the potential of longerterm 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 individualized endurance exercises using treadmills.
WHILE YOU MAY NOT FEEL THE EFFECTS OF EXERCISE AT FIRST, PERSISTENCE CAN PAY OFF! EXERCISES FOR THE BRAIN Some very interesting data illustrating how the brain reorganizes to adapt to MS damage was presented by a research team from the San Raffaele Hospital in Milan, Italy. This team
WHAT’S GOOD FOR THE BODY MAY BE GOOD FOR THE BRAIN
11 RESOURCES For more on cognitive issues and MS, visit nationalMSsociety.org/cognition. To learn more about exercise and MS, visit nationalMSsociety.org/exercise, or call 1-800-344-4867 to find out about exercise programs in the area.
looked at the impacts of a 12-week computerassisted course that focused on training to increase memory and attention (the course was previously reported to improve attention and executive thinking abilities). Using functional MRI, which allows a real-time glimpse of the brain at work, they found indicators that brain activity had increased in specific areas. This improvement appeared to persist at least six months after the training was completed. Researchers from Milan and from Kessler also reported that people with MS with more “brain reserve” (larger brain size) and more “cognitive reserve” (increasing the ability to withstand or postpone MS-associated decline in cognition with activities such as doing puzzles or playing music) were at lower risk for cognitive changes associated with brain lesions. Even when brain size is accounted for, those with more cognitive reserve appear to have lower risk for cognitive changes. There’s nothing any of us can do about the size of our brains. But growing evidence suggests that people may be able to build cognitive reserve
MS CONNECTION: SPRING 2013
by engaging in enrichment activities (Words with Friends anyone?). It’s exciting to think that 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 an overview of MS-related research presented at the meeting. n Bruce Bebo, PhD, is associate vice president of Discovery Research at the National MS Society, and was previously a research immunologist focusing on the influence of sex hormones on MS. He is a 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.
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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, an oral anti-inflammatory agent, in 250 people with progressive forms of MS. The study is principally funded by NeuroNEXT Network, a clinical trials initiative of the National Institutes of Health, with additional support by MediciNova, the company that will supply ibudilast. The National MS Society actively advocated for this uniquely collaborative trial, and is also providing funding support because it aligns with the Society’s strategic focus on progressive MS, and may answer important questions about the best ways to measure the benefits of therapies aimed at protecting the nervous system from MS. The trial will be conducted at 28 sites across the U.S. under the leadership of Principal Investigator Robert Fox, 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.
“There is a significant, unmet need for treatments that can benefit people with progressive forms of MS,” said Timothy Coetzee, PhD, Chief Research Officer of the National MS Society. “This clinical trial of ibudilast will provide important information on a potential way to stop MS damage, as well as how to measure treatment benefits, and aligns well with the Society’s research agenda for stopping MS progression.” This could lead to shorter, more effective 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 28 academic medical centers in the NeuroNEXT Network. The trial is expected to require approximately three years for enrollment, treatment, and data analyses. The trial will be recruiting individuals who have either primaryprogressive MS or secondary-progressive MS and who meet specific entrance criteria. Like the 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 facilitate testing of an “on the shelf ” therapy in people with MS. Our research gOal: We are a driving force of MS research and treatment to: STOPPING THE DISEASE
Our VisiOn: A world free of multiple sclerosis
STOPPING THE DISEASE
Our research Fundraising gOal: We will raise $250 million for MS research by the end of 2015 STOPPING THE DISEASE
RESTORING WHAT’S BEEN LOST
RESTORING WHAT’S BEEN LOST
ENDING MS FOREVER
sTOP: We must stop all disease activity and prevent further progression for people already living with MS
RESTORING WHAT’S BEEN LOST
ENDING MS FOREVER
resTOre: We must restore all function that has already been lost to nervous system damage from MS ENDING MS FOREVER
end: We must work to completely eradicate MS and prevent it from ever occurring in the future
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RESEARCH
PROGRESS AT AAN MEETING Over 12,000 neurologists and other researchers gathered in San Diego in March to share the most up-to-date research on treating neurological diseases such as multiple sclerosis at the annual American Academy of Neurology’s (AAN) meeting. Here are a few highlights from the more than 500 MS-related presentations that focused on stopping MS, restoring function and ending MS forever.
STOPPING MS Progressive MS A small study of an oral blood-pressure medicine, Amiloride, found a reduction of brain shrinkage associated with the disease in 14 people with primary-progressive MS. Further testing in a larger study is now underway. Researchers in a large trial of Gilenya for primary-progressive MS reported good progress in setting up the trial. This is one of several ongoing large studies in progressive MS.
PROFESSOR EBERS, CENTER, RECEIVES THE JOHN DYSTEL PRIZE FROM DRS. TIMOTHY COETZEE AND BRUCE COHEN 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-year phase III trial found that injections of twice the standard dose of glatiramer acetate (Copaxone) taken three times per week were effective in reducing relapses and MRI-detected disease activity, with no unexpected safety issues.
MS Therapies
A large study in France (ENIGM) found that among 200 people who switched from natalizumab (Tysabri) to fingolimod (Gilenya), 32% experienced a relapse during the “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 a study on peginterferon beta-1a (a new form of Avonex) designed to stay in the body longer than the standard form suggest that peginterferon injected every two or four
Results of two phase III trials of oral dimethyl fumarate (Tecfidera), approved by the FDA in March, suggest that the treatment begins to take full effect after three months’ use. This
014 effect was sustained over the two-year span of the trials. Several presentations focused on results from extension phases of completed clinical trials in relapsing-remitting MS. To read more, visit www.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 benefits of vaccination with their doctor. 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, including one that analyzed serum samples from people with MS who were taking glatiramer acetate (Copaxone). The researchers were able to find antibody profiles that could detect 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 effective treatments for MS. They will analyze data from completed MS clinical trials and other studies and work with regulatory agencies to qualify a new outcome measure that can more sensitively track the impact of therapies
MS CONNECTION: FALL 2013
on disease disability and progression in future trials.
RESTORING FUNCTION Several studies focused on the benefits of exercise 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. A study on CCSVI did not find a significant difference between 61 people with MS and 20 people without MS when technicians trained in CCSVI assessment used various ultrasound techniques to detect the condition. The first results of another study of controlled endovascular treatment at six months found no adverse events, but also no sustained improvement in venous outflow.
ENDING THE DISEASE FOREVER Several 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 interact with environmental factors, Professor George Ebers was this year’s recipient of the John Dystel Prize for MS Research, given jointly by the Society and the AAN. Read scientific summaries on the AAN’s website at www.abstracts2view.com/aan.
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2013 BIKE MS COMMITTEE
EVENTS
BIKE MS The 2013 Zimmerman MS Bike Ride Presented by Mack Cycle and Fitness boasted over 1,300 registrants . Participants traveled from 38 states and 5 countries to cycle the new route from FIU’s Modesto A. Maidique Campus to the luxurious Key Largo Resorts. Among the riders was #1 fundraiser, Keith Rosen, celebrating his fourth appearance in the “Top 5” in five years. Joining Keith on the route were great teams from corporations, such as, DHL, Advanced Roofing, 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 2014 Bike MS: Breakaway to Key Largo. Cooler temperatures await! The 28th installment of the event 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
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2013 BIKE MS TOP 25 TEAMS
Mack Cycle and Fitness Bacardi Team Storm Riders Weston Velo Mission MS Advanced Roofing Tar Peddlers / Solar Sprockets Microsoft DHL Pedal on for a Cure Team Canada Fights MS G4S Leslie's Angels Cycle World Miami
2013 BIKE MS TOP 25 INDIVIDUALS Keith Rosen Robert Kornahrens Bill Sanderson Joey Bonomo German Agudelo Michael Hogsten Gary Smith Helen-Eleni Sonenreich David Scott McGuire Claudette Halluk Charles Martin Chris Walters
David Buck Marie-Lisette Flores Robert Schwartz Drew Schnitt Tamara Stone George Wilson John Wrench Jonathan Berman Ron Jones Rex Hamilton Coke Coakley Gerry Cullen
Never Give Up zMotion Manny's Fannies Team Holman Cycle Counters American Express Centurions Citco Subway/IPC Bike Team Mission Remission MicSuz Team Jarden Team CHS
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on everyone to continue making a difference in the community and finding a cure. Thank you for every step you take.
CAN’T WAIT FOR WALK MS 2014? Walk MS 2014 registration will open this fall. Visit www.mswalksouthflorida.org to register.
Walk 2013
EVENTS
WALK MS This spring, more than 3,800 walkers in South Florida joined together at 7 Walk MS events. Supporters included people with MS, friends, family, co-workers and neighbors who joined the fight against MS. This year Walk MS raised $850,000. Thank you to everyone who participated, donated and volunteered. Huge thanks to the Title Sponsor, United Automobile Insurance Company (UAIC). For the second year, UAIC sponsored Walk MS and participated in the walk. MIA Shoes sponsored the Champions Against MS Tent, a tent for someone with MS to learn about programs, receive a goodie bag and a Champions Against MS t-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
February 22, 2014
March 23, 2014
Lee County Naples
Aventura Boca Raton
February 23, 2014
April 5, 2014
Fort Lauderdale The Palm Beaches
Coral Gables
2013 WALK MS COMMITTEES Aventura Estrella Mitrani - Co-Chair Jane Matthews Doug Bonds – Co-Chair Joe Maya Andrea Aghlaghanian Marlene Ruber Diana Bustillo Luis Yepez Barbara Liebmann Boca Raton Jodi Rothman – Chair Gerry Cohen Mitchell Cohen Sandy Segal Billie Cohen Andrew Tharp Dale Cohen Al Witko Coral Gables Vanessa Bedoya – Chair Jessica Ashbaugh Roberta Brambilla Bryan Cereijo Jose Garcia-Tunon
Melissa Lorenzo Jose Rivas Felix Oliana Torres Adam Vega
018 Fort Lauderdale Drew Gaut Deb Giblin-Davis Stacy Jacobs Lee County Tonya Emerson - Chair Sue Arend-Baxter Denise Baxter Clinton Baxter Virginia Cesta
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Rachael Sherman Noreen Nejaz Deanna Sylvestri
Naples Lisa Osborne - Chair Dr. Jim Croley Christy Doyle Amy Frerichs
Laura Crabtree Cathy Kennedy Melody Dennis Barbara Walthier
Palm Beach Angela Acevedo Martin Herbert Hartman Anna Carter Iveth Thompson Molly Connell Alexis Villwock
Pam Osborne Erin Osborne Stephen Osborne Ian Russell
WALK MS SPECIAL AWARDS Best Corporate Teams ARA March Madness Seaboard Team Carrie’s Knights Marc MS Angels McDonald & Osborne PA Team B&P Team UAIC
Most Improved Team Team UAIC Team Erin Unplugged MS J Squad VII Carrie’s Knights The MS Stompers TEAM ROSE! JC & the Sunshine Clan
Best Friends and Family Team Team WIlliams Island Team Alie CDC Builders Kathy’s Sole Mates Stepping Ashore GoGo Walkers After 6 for a Cure
Best Rookie Team Bloomingdale’s Partners in Time ARA March Madness Believe in Miracles Team Rudy Stepping Ashore Team Doyle Team DRY
Best School Team Team ACES Team Everglades Christopher Columbus Pembroke Pines Charter Middle Suncoast High School Computer Club
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SUPPORT GROUPS
BROWARD COUNTY NMSS Coral Springs Afternoon Group For individuals with MS only The purpose of this open ended group is to educate members about the newest treatments for MS. Group members will also discuss coping mechanisms for those in our lives who do not have MS and don’t always understand MS. *Speakers/Specialists will be announced by Support Group Leader(s) 3rd Tuesday of month, 1:00 pm Bring a bag Lunch & Socialize 1:45 pm meeting Coral Springs Medical Center Community Education Center 3100 Coral Hills Drive Coral Springs, FL 33065 Facilitators: Cindee Horowitz: (954) 345-2332 antcyd@aol.com Michael Myette: (954) 227-4738 pmmyette@aol.com
COLLIER/ LEE COUNTY NMSS 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 Briggs Wellness Center-Briggs Conference Room, 2nd floor by Subway 399 Ninth Street North Naples, FL 34102 *Group location may vary depending on month. Please contact the Local Contact for confirmation on location. Local Contact: Janice Bronstein at (239) 774-7619 National MS Society Contact : Tanya Dannibale: (239) 793-7009 Tanya.dannibale@fls.nmss.org 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 Group Leader(s) 1st Sunday of month, 3:00 pm 636 Del Prado Blvd. South Room A Cape Coral, FL 33990 Dave Lane: (239) 652-3602 lanenikken@comcast.net Martha Hannigan: (239) 310-6866 capecoralmsgroup@gmail.com
020 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 Support Group Leader(s) 3rd Thursday of month, 5:00 pm St. Hilary Episcopal Church 5011 McGregor Blvd. Fort Myers, FL 33901 Dave Lane: (239) 652-3602 lanenikken@comcast.net Karen Hart: (239) 209-7549 or (239) 400-0529 Kare4@comcast.net Social luncheon held 1st Thursday of month Contact Karen Hart for details
MIAMI DADE COUNTY NMSS Miami-Dade Spiritual Support Group Persons of all faiths welcome 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 Support Group Leader(s) 2nd Thursday of month, 6:00 pm Doctors Hospital 5000 University Drive Coral Gables, FL 33146 Go to the Chapel on the second floor near Elevator A Chaplain Ronald Gaudio: (786) 308-3800 ronaldga@baptisthealth.net NMSS South Miami-Dade Evening Group The purpose of this open ended group is to
MS CONNECTION: FALL 2013
discuss daily obstacles and how to cope with these obstacles as a result of MS. *Speakers/Specialists will be announced by Support Group Leader(s) 2nd Thursday of month, 7:00 pm Doctors’ Hospital - Cafeteria 5000 University Drive Coral Gables, FL 33146 Maria Zaldivar : (305) 710-2210 mariazaldivar@comcast.net Kirstie Bray: (305) 984-7501 kbray624@gmail.com 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 Support Group Leader(s) 1st Tuesday of month, 7:00 pm Mt. Sinai Medical Center Founders Conference Center 1st Floor, Warner Bldg. 4300 Alton Road Miami Beach, FL 33140 Gladys Fernandez : (305) 534-8848 abbayayi@yahoo.com Ellie Klein Cardonne : (305) 322-2299 ecardonne@bellsouth.net CafÊ con Leche Conversation and Support for People with Multiple Sclerosis National Multiple Sclerosis Society offers once a month a telephone support group in Spanish 2nd Tuesday of the Month, 2:00-3:30 pm For more information or to subscribe call 1-800344-4867, option 3
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PALM BEACH COUNTY NMSS 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, combating fatigue, keeping organized and handling other health issues with MS. *Must call or e-mail SHG leader to RSVP and receive confirmation on meeting *Speakers/Specialists will be announced by Support Group Leader(s) 1st Wednesday of month, 6:45 pm West Boca Medical Center 21664 State Road 7 Boca Raton, FL 33428 Doctors’ Dining Room Claudia Erdman: (561) 483-4257 bocaclaudia@aol.com 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 Support Group Leader(s) 2nd Monday of month, 6:30 pm Borland Center 3885 PGA Blvd. Palm Beach Gardens, FL 33418 Nancy Decker: (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 Support Group Leader(s) 2nd Tuesday of month, 7:00 pm
Hagen Ranch Road Public Library 14350 Hagen Ranch Rd. Delray Beach, FL 33446 Jim Montgomery: (561) 740-7867 cjjm@bellsouth.net Eliot Reinstein: (561) 302-6913 Eliotr7@comcast.net 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 Support Group Leader(s) 3rd Monday of Month at 6:30 pm 960 South State Road 7 Wellington, FL 33414 Meeting room in Total Wine Howard Chiet: (561) 795-5233 JJHAKKS@gmail.com
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TOP 5 TEAMS
EVENTS
RUN TO STOP MS The third year proved to be a charm for the 2013 Coral Gables MS 5K Run. This was the most successful year yet with almost 400 runners raising over $27,000. The 5K Run is a 3.1 miles timed event that starts and finishes at Merrick Park with a scenic route through the surrounding areas of Granada Golf Course. The top 3 finishers in each age group received a medal and the overall top 3 male and female winners received a plaque and gift certificates from The Florida Running Company. The kids also had their fun by participating in our 1/4 mile Kids Fun Run and each participant received a medal for competing. Thank you to all who dared to Run to Stop MS.
Team KT Bugg Team Paradise Team Kotler Bacon For President Team Daly
TOP 5 INDIVIDUALS Chelsea Krueger Dale Kotler Julianna Lessor Mike Silver Cristina Estepe
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EVENTS
CHALLENGE WALK MS CHALLENGE: 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 Noreen Nezaj, Jane Garceau, Lisa Sculnick, Estrella Mitrani, Maria Duarte, Valerie George and Gjyle Nezaj. This unforgettable 3 day weekend began in Historic Charleston traveling through some of the most scenic and beautiful areas, finishing in Isle of Palms. Throughout the 50 miles, walkers overcame obstacles along the way like cold weather and blisters. Their passion and drive guided them to the finish 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! Registration is currently open for the 2014 Challenge Walk MS: February 28 – March 2, 2014. For more information, contact Denise Dixon at denise.dixon@nmss.org or call 954-731-4224.
Alie was diagnosed with multiple sclerosis at the age of 14. She receives the utmost care and medications from her doctors to help slow the progression of her disease. Alie is living her life to the fullest while in college! Alie formed Alie’s Fund for Children with MS in order to provide funds to children ages 2-22 who 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 Programs Department at 1 800 FIGHT MS; 954-731-4224. Documentation of your MS diagnosis and verification of age will be required.
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EVENTS
MS GOLF TOURNAMENT
CBM OF AMERICA, INC.
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. presented by MS Golf Tournament Presented by AutoNation. Each foursome was paired with a celebrity and enjoyed an amazing day on a championship golf course along with lunch, on-course refreshments and a post golf awards reception. The tournament featured a longest drive competition, closest to the pin, straightest drive and silent auction. With great appreciation, the MS Golf Tournament raised over $80,000. The National MS Society greatly thanks third time Presenting Sponsor, CBM of America, Inc. and chair, Stuart Kosh. A special thanks to all the sponsors and participants who contribute year after year to the success of the tournament.
2013 WINNERS •
1st Place: Mike Stephens, Stu Brown, Paul Sgro,Larry Dezenzo
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2nd Place: Todd Templin, George Lee, Shane Kerr, Don Wright
To join next year’s Golf Committee and for information on sponsorship opportunities for 2014, please contact Monica Whiting at monica.whiting@nmss.org or 954-731-4224.
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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 excitement at the National MS Society Gala Luncheon. Join chair Ila Davidoff and honorary co-chairs Deborah DelPrete, Monica Goldstein and Carrie Schulman as this spectacular event takes place at the Broward County Convention Center on Wednesday, January 22, 2014. Guests will be entertained by a breathtaking show created by Cirque Dreams. The mesmerizing and energetic performance will make it a luncheon to remember. The MS Gala Luncheon raises funds that will aid in the research programs and services that the National MS Society supports throughout the year. Be a part of this important day of celebration and recognition of honoree, Alan S. Becker. To purchase tickets or become a sponsor please contact Monica Whiting at 954 731-4224 or monica. whiting@nmss.org.
VOLUNTEER CORNER Thank 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 click on “volunteer.” Does your company or school want to volunteer together as a group for the National MS Society? You can help at many of our events and programs such as Walk MS or Bike MS. Contact Jaime Valdivia at jaime.valdivia@nmss.org or 954-731-4224 for more details.
026 WELLNESS PROGRAMS The National MS Society provides wellness programs to the MS community. You are invited to enjoy these classes free of charge. For more information contact: Suhaill Ruano 1 800 FIGHT MS (800-344-4867) Email: suhaill.ruano@nmss.org
BROWARD WELLNESS PROGRAMS Coral Springs Medical Center Tai Chi: Saturday at 2:00 pm Chair Yoga: Tuesday and Thursday at 12:45 pm Kathy Byrne: (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: Monday and Wednesday at 8:30 am, 12:00 pm, 5:30 pm Rosa Santana: (954) 456-6077 Weston Yoga Call Fabienne Grossman for an appointment (954) 871-5222
COLLIER/LEE COUNTY NCH Briggs Wellness Center Aquatics: Tuesday at 9:30 am Yoga and Balance: Monday at 2:15 pm
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Cape Coral Wellness Facility Gentle Yoga: Monday at 12:00 pm Aquatics: Tuesday and Thursday at 11:30 am Fort Myers Wellness Facility Gentle Yoga: Tuesday and Thursday at 11:30 am
MIAMI-DADE Tai Chi with Tony **ON HOLD**
PALM BEACH Mae Volen Center 1515 W. Palmetto Park Road Boca Raton (561) 395-8920 Tai Chi: Friday 12:00 - 1:00 pm Yoga: Friday 1:00 - 2:00 pm
HELP US GO GREEN RECEIVE THE MS CONNECTION ONLINE. CALL 1-800-344-4867 OR 954-731-4224 TO SIGN UP TODAY
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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 Marketplace—a component of the Affordable Care Act—begins enrollment for coverage to begin Jan. 1, 2014. The Web-based Health Insurance Marketplaces, (sometimes called “exchanges”) are a new way of shopping for health insurance coverage, allowing people to compare plans, get tax credits and other cost help. The program also includes governmentcertified “navigators,” who are expert health insurance counselors funded by the marketplaces to provide unbiased information, education and enrollment help to consumers at no cost. Coverage through marketplace plans is guaranteed regardless of pre-existing conditions, such as multiple sclerosis, and covers preventive and needed care, such as doctor’s visits, hospitalizations, maternity leave, emergency room care and prescriptions. All plans that participate in the marketplace have to show costs and what is covered in simple, understandable language that allows people to make “apples to apples” comparisons between plans. Enrollment begins October 1st at www.healthcare.gov. Call the Society at 1-800344-4867 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 each paycheck to fund cutting-edge research and provide programs and services to help people affected by MS move their lives forward. Federal government employees and military personnel are eligible to participate in the Combined Federal Campaign (CFC), the nation’s largest workplace giving program. If you participate in the CFC, designate your gift to the Society using CFC#11409. If your company offers a workplace giving program, look for the Society listed under Community Health Charities. If your employer doesn’t offer 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 MS Gala Luncheon February 22, 2014 Walk MS: Lee County Walk MS: Naples February 23, 2014 Walk MS: Fort Lauderdale Walk MS: The Palm Beaches
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 Walk MS: Coral Gables