SPRING 2013 SOUTH FLORIDA CHAPTER
MS CONNECTION NEWSLETTER
SPECIAL RESEARCH EVENT: MS THROUGH ALL AGES
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INSIDE 02 THIS ISSUE
FDA APPROVED NEW ORAL THERAPY
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MS GALA & FASHION SHOW
PROGRESSIVE MS COLLABORATIVE
MS GOLF TOURNAMENT
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MS CONNECTION: SPRING 2013
RESEARCH
FDA APPROVES NEW ORAL THERAPY FDA Approves Twice a Day Capsules Called Tecfidera™ (formerly called BG-12) for Relapsing MS
CONNECT WITH US ONLINE: www.nationalMSsociety.org/fls
Email: FLS_Office@nmss.org
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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!
The U.S. Food and Drug Administration has approved Tecfidera™ capsules (dimethyl fumarate, Biogen Idec –formerly “BG-12”) as a first-line disease-modifying therapy for people with relapsing forms of MS. This makes the third oral therapy approved for relapsing MS, and the tenth disease-modifying treatment available in the U.S. Tecfidera is expected to be available by prescription within a few days. “The approval of Tecfidera is an important expansion of therapeutic options, and increases our ability to find effective and tolerable treatment solutions for individual patients,” said Bruce A. Cohen, MD, Professor, Davee Department of Neurology and Clinical Neurosciences at Northwestern University’s Feinberg School of Medicine, and Chair of the National MS Society’s National Medical Advisory Committee. “As with all newly-approved treatments, we will learn more about the benefits and safety of Tecfidera over time,” he added. “The approval of Tecfidera is encouraging news for people who have relapsing forms of MS,” noted Timothy Coetzee, PhD, Chief Research Officer at the National MS Society. “Having ten diseasemodifying therapies available for relapsing forms of MS further motivates us to gather the forces of the global community to make similar strides for people with progressive forms of MS, for whom there are fewer options.” To read more about Tecfidera™, visit www.nationalMSsociety.org/ news.
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NATIONALMSSOCIETY.ORG | 1-800-344-4867
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: Jennifer Carroll 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
04 PROGRAMS
TEEN DAY GROWS UP – NOW “TEEN EXPRESSION”
MS CONNECTION: SPRING 2013
Teens currently involved in this program are from all walks of life with a wide range of interests and talents. The members identified the following goals for the program: • Build leadership skills • Increase volunteer involvement with local chapter • Learn about how MS affects families and how to cope • Form supportive relationships with other teens in similar circumstances • Learn to summon strength and courage in difficult times • Establish lifelong friendships and a healthy support network
2012 marked a very special milestone in our Teen Day event: passionate teens taking a proactive role in evolving and leading the program.
• Be inspired and help inspire others to get active in their communities to create a world free of MS
Fifteen teens attended Teen Day in 2012 and they decided they wanted to help create a program that more closely resembled who they are and what they hope to achieve in the program and in life. The name “Teen Expression” arose out of a team-building exercise.
• Receive education about MS and wellness
Teen Expression members meet regularly throughout the year, both in-person and via conference call, to plan and execute programs for other teens in our chapter area. The purpose of Teen Expression is to have fun, plan activities and raise awareness one teen at a time. The teens will also design a new logo and publish a teen-managed blog related to the program.
• Act as consultants to chapter staff planning teen programs • Learn how to apply for college and scholarships Teen Expression is for teens, ages 13-17 years old, whose parent, grandparent or guardian has MS and teens with MS. There is no charge for this program. More information about the 2013 Teen Expression program (to be held during summer) will be released soon. Stay tuned!
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NATIONALMSSOCIETY.ORG | 1-800-344-4867
RESEARCH NATIONAL MS SOCIETY COMMITS MAJOR GRANT TO UNIVERSITY OF MIAMI TO EXPLORE MS GENETICS IN HISPANICS
MS in people of Hispanic/Latino descent is relatively high, the MS related genetics of this population has not been extensively studied.
The National MS Society recently committed to fund over $640,000 to the John P. Hussman Institute for Human Genomics at University of Miami for its Genetic Study on Hispanics and Multiple Sclerosis. The research grant study will explore genes that make people of Hispanic/ Latino descent susceptible to developing MS.
The results from these studies will help pinpoint additional genetic risk factors for MS, and may help inform efforts to develop new therapies, as well as finding ways to prevent the disease.
Both environmental and genetic factors combine to make people susceptible to MS.
Using DNA from Hispanic individuals with and without MS, Dr. Jacob McCauley and his colleagues at University of Miami are examining known genes that influence MS and searching for new genes that may be involved in MS specifically in the Hispanic/Latino population.
To participate in the study please contact Patricia Manrique at 305-243-4028 or cmanrique@ med.miami.edu; for more information about donating to this study, contact Mark Kotler at 954-731-4224 or mark.kotler@nmss.org.
Most genetic studies in MS have examined genes in Caucasians of Northern European ancestory. Although the prevalence rate of
EDUCATIONAL TELECONFERENCE SERIES 2013 Tuesday, July 9, 2013 7:30 - 8:30 p.m. Riding the MS Emotional Roller Coaster A look at MS and its common emotional changes including: deÂŹpression, irritability, anger, anxiety, PBA and management strategies.
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.
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This year’s Women’s Retreat will be the bee’s knees. Bring out your inner 1920’s flapper while you travel back in time during the 2013 Dames & Dolls Women’s Retreat weekend. And whether you Charleston or Foxtrot, there will be something for everyone at this year’s event! Date The event will begin at 3 pm on Friday, July 19 and will conclude at 11:30 am on Sunday, July 21, 2013. Location Renaissance Plantation Hotel 1230 South Pine Island Road Plantation, FL 33324 Registration Space is limited, so request your registration packet today by either: • downloading the application online at www.nationalMSsociety.org/fls • emailing a request for an application to FLS.MSPrograms@nmss.org • or calling and requesting an application from 954-731-4224
MS CONNECTION: SPRING 2013
2013 Women’s Retreat Highlights We’ve added new events as well as new twists on old favorites: • Pampering & Activities • Games / Bingo • Karaoke • Make-Up Application • Massages • Saturday Night at the Speakeasy Physical Health • Aquatics • Tai Chi • Yoga Women’s Workshops • First-Timers Meeting • MS & Resiliency • MS Girl Talk Panel • Understanding Social Security & Disability Don’t forget to bring your best 1920s fashions. We’ll see you at the speakeasy!
NATIONALMSSOCIETY.ORG | 1-800-344-4867
FUNDRAISING
MS GALA & FASHION SHOW On January 23, 2013 the National MS Society celebrated the 30th Anniversary MS Gala & Fashion Show at the Sheltair Hangar #1170. The sold out event raised more than $500,000! This year’s recipients of the Hope Award were Fred and Jodi Rothman and their daughters, Lecia and Alie. They became dedicated to finding a cure when Alie was diagnosed with MS during her freshman year of high school.
07 Financial Group/Mass Mutual, served as title sponsor for the event. Three-time event chair, Deborah DelPrete, presided and was assisted by honorary chairs Monica Goldstein and Carrie Schulman. The day was complete with a runway show from fashion designer Rene Ruiz as he presented his elegant Spring/Summer 2013 collection. The models were adorned with exquisite jewelry provided by J.R. Dunn Jewelers, the official jewelry sponsor of the MS Gala & Fashion Show. For more information about the MS Gala & Fashion Show, please contact Monica Whiting at 954-731-4224 or monica.whiting@nmss. org.
Carrie and David Schulman, principals of DBS
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.
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MS CONNECTION: SPRING 2013
RESEARCH
SPECIAL RESEARCH EVENT: MS THROUGH ALL AGES Join us for a special discussion of the clinical course and underlying mechanisms of multiple sclerosis in different age groups (including children) as well as discussion about Progressive MS.
TANUJA CHITNIS, M.D. Director, Partners Pediatric MS Center, Massachusetts General Hospital Associate Professor in Neurology, Harvard Medical School
We are privileged to welcome our guest speaker, Tanuja Chitnis, M.D., to South Florida. Friday, May 3, 2013 3 – 4:30 PM Broward Health North 201 E. Sample Road Deerfield Beach, FL 33064 Food and refreshments will be served. Spaces are limited. Call 1-800-FIGHT-MS to register for the event.
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.
NATIONALMSSOCIETY.ORG | 1-800-344-4867
RESEARCH NATIONAL MS SOCIETY PARTNERS WITH THE UNIVERSITY OF MIAMI AND ACCERA, INC. TO TEST NOVEL “MEDICAL FOOD” FOR MS COGNITIVE IMPAIRMENT The National MS Society’s Fast Forward drug development subsidiary is partnering with Accera, Inc., and the University of Miami’s Miller School of Medicine in a clinical trial to determine potential benefits of Accera’s medical food, Axona® (caprylic triglyceride), on cognitive impairment in people with MS. Funding to test this novel dietary approach to a troubling MS symptom provides University of Miami with support over a 36-month period, and like other Fast Forward research partnerships, payments will be contingent upon the completion of specific milestones achieved during the trial. Novel Approach: Axona is an FDA-regulated “medical food.” Axona has been approved by the FDA for management of biological processes associated with mild to moderate Alzheimer’s disease. As a medical food, Axona is intended to be used under physician supervision. It has not been approved by the FDA for use in MS. Cognitive problems are a common symptom in individuals with MS and may have a negative impact on relationships, work, and quality of life. Treatment options are limited. Glucose (a type of sugar) is used to fuel the cells of the healthy brain. For people with neurological conditions such as MS, glucose may not be converted
09 into energy as efficiently as it would be in a healthy brain, which can lead to a decrease in cognitive function. Axona may work to bypass this problem by providing an alternative energy source that is processed in the liver and used by the brain. This placebo-controlled study will be conducted by researchers led by Melissa Ortega, MD and Heather Katzen, Ph.D. at the University of Miami MS Center and will enroll 158 people with MS to determine whether Axona can help restore cognitive function to people with MS. Researchers are recruiting trial participants in the local South Florida area who have MS and have experienced cognitive changes. For more information or to schedule a screening visit, contact the research coordinator, Gloria Rodriguez at 305-243-8052 or by email at GRodriguez13@med.miami.edu.
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MS CONNECTION: SPRING 2013
ADVOCACY
VICTORY IN MEDICARE SETTLEMENT BY MARCELLA DURAND
A settlement to end Medicare’s so-called “Improvement Standard,” which denied coverage of certain treatment services to people with multiple sclerosis and other diseases, was officially approved January 24th by Chief Judge Christina Reiss of the U.S. District Court in Vermont. The settlement to end the standard was reached in a nationwide lawsuit in which the National MS Society was a plaintiff. The Society had joined other organizations including the Parkinson’s Action Network, the Alzheimer’s Association, United Cerebral Palsy and Paralyzed Veterans of America in a class-action suit to challenge the Centers for Medicare and Medicaid Services (CMS) over the standard. The standard had denied Medicare coverage for services such as skilled nursing facilities, home health and outpatient therapy benefits like physical or occupational therapy to Medicare beneficiaries living with MS if they did not show improvement. However, these often-expensive services can be critical to prevent decline or maximize independence.
MS ACTIVISTS MAKE CHANGE HAPPEN The settlement’s approval effectively means that any denial citing the “improvement standard” can be appealed moving forward and even dating back to Jan 18, 2011 (the date the case was filed). CMS is now tasked with revising its Medicare Benefit Policy Manual and other policies, guidelines and instructions to ensure that Medicare coverage is available for skilled services in home health, nursing home and outpatient settings. CMS must also develop and implement a nationwide education campaign to ensure beneficiaries with chronic conditions are not denied coverage for critical services. For more information, visit www.MSActivist. org. Marcella Durand is the content planning and development manager for the Society.
NATIONALMSSOCIETY.ORG | 1-800-344-4867
RESEARCH
INTERNATIONAL PROGRESSIVE MS COLLABORATIVE
11 tackle these challenges. Increased attention will speed these efforts; but we must do it together.
FIVE PRIORITY AREAS DISCUSSED Five key research priorities were identified, reported upon, and rigorously discussed for appropriate action. #1 Identifying Targets and Repurposing Opportunities for Progressive MS • Studies of MS susceptibility genes show no difference between relapsing and progressive MS, or any genes driving disease severity; while genetic and environmental factors may influence relapses and repair mechanisms.
RESEARCHERS GATHER FOR THE FIRST SCIENTIFIC MEETING OF THE INTERNATIONAL PROGRESSIVE MS COLLABORATIVE
In the first meeting of its kind, more than 170 MS researchers and clinicians from around the world gathered to discuss key challenges and strategies to expedite treatments for progressive forms of MS. Leading experts across a variety of research areas affirmed the importance of working together globally to drive advances in treating progressive MS, as well as a shared optimism that such an investment can yield the results urgently needed by those living with the disease. Attendees further noted challenges that must be overcome to identify effective therapies, as well as many current efforts that are underway to
• A different part of the immune system is more prominent in progressive than relapsing MS; discovering ways to safely target this is important; combination therapies may be appropriate. • Opportunities may exist for repurposing therapies approved for other diseases; but there need to be incentives and a clear pathway to enable off-patent drugs to be developed for progressive MS.
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MS CONNECTION: SPRING 2013
“THERE ARE OBVIOUS SCIENTIFIC CHALLENGES, AND CHALLENGES IN INTERNATIONAL EFFORTS, BUT IT IS EXTREMELY IMPORTANT THAT THIS MOVES FORWARD AS A GLOBAL EFFORT.” MR. WEYMAN JOHNSON, MSIF CHAIR, WHO LIVES WITH MS.
#2 Experimental Models for Preclinical Evaluation of Therapies • There is urgent need for models of clinical symptoms and underlying tissue damage in progressive MS. • Some models permit the study of myelin repair, such as toxin models. • Progressive MS shows unique pathology, accumulating with advancing age; more information about progression pathology and aging can drive the development of new models for drug testing. #3 Strategies for Phase II Clinical Trials • Testing new therapies in relapsing MS is facilitated by getting MRI signs of positive response in very short (six month) phase II trials; there is no equivalent in progressive MS. • Biomarkers are needed to measure nerve fiber injury or integrity and other factors contributing to progression; continued trials are needed to evaluate a candidate marker of nerve damage in spinal fluid.
• Emerging imaging biomarkers that can detect brain and spinal cord integrity may be useful for both phase II and phase III trials in progressive MS. • New clinical trial designs are needed so that more therapies can be tested more quickly at lower cost; a secondary-progressive trial using a novel “adaptive” design is getting underway. #4 Clinical Outcome Measures and Trial Design • Better ways to measure improvement and success of therapies in progressive MS is needed; ideally sensitive to change over time, and predictive of future change. • New technologies may help measure realtime impacts of treatments. • Improving favorable outcomes requires better stratification of different types of progressive MS. • It is important to account for comorbid diseases of trial participants and environmental/ lifestyle factors.
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• Exploring previous clinical trials, patient registries and databases may be fruitful. #5 Symptom Management and Rehabilitation • Research is needed to determine ways to keep people exercising beyond time-limited supervised programs. • Larger, well-controlled trials are needed to evaluate symptomatic therapies and rehabilitation methods, particularly cognitive rehabilitation interventions. • When testing therapies to treat cognitive impairment, a person’s lifetime intellectual enrichment may influence outcomes, since those with higher “cognitive reserve” may fare better. • There is an urgent need for symptom management and exercise programs to improve quality of life for those who are severely impacted by MS progression. Scientific leadership of the Collaborative is evaluating all advice and will be putting forth an action agenda to focus and accelerate progress toward uncovering solutions for everyone affected by Progressive MS.
May 14, 2013: 8:00 – 9:00 p.m. EST Environmental Factors: How To Influence The World Around You Presented by Can Do MS Programs Consultants: Pat Kennedy, RN, CNP, MSCN and Deborah M. Miller, PhD, LISW June 11, 2013: 8:00 – 9:00 p.m. EST Aging With MS Presented by Can Do MS Programs Consultants: Gail Hartley, MSN, NP, MSCN and Terry DiLorenzo, PhD
Visit Can Do MS website for more information and sign up today! http://www.mscando.org/multiplesclerosis-programs/webinar-series/register/
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MS CONNECTION: SPRING 2013
EVENTS CBM OF AMERICA, INC. MS GOLF TOURNAMENT PRESENTED BY AUTONATION What could be easier or more fun than raising money for your neighbors living with MS by spending the day on the golf course? So grab your clubs, a few buddies and your friendly competitive spirit and join us for our annual golf event. The event kicks off with shotgun start scramble which also includes a putting contest, closest to the pin, longest drive and hole in one. During the day golfers are treated to snacks, beverages and fantastic prizes. The tournament concludes with cocktails, auctions and an awards banquet.
EVENT HIGHLIGHTS INCLUDE: • Loaded gift bags • Amazing auction items • Hole in one prizes including luxury vehicles • Great gifts for every golfer • Tournament prizes for 1st, 2nd & 3rd place teams Location: Boca Lago Country Club in Boca Raton SCHEDULE OF EVENTS Friday, May 17, 2013 7:30 am Registration/Breakfast Putting Contest 8:30 am Shotgun Start (Scramble Format) 2:00 pm Cocktails (Cash Bar), Auction 2:30 pm Awards Banquet
Don’t golf? Come to the Official Tournament Pairing Party at Smoke On The Water Cigar Bar in Weston. The cost is only $10 and includes a buffet, dinner, drinks, silent auction and great networking time Thursday, May 16, 2013 6:30 – 9 pm Smoke on the Water Cigar Bar 1630 Bell Tower Lane Weston, FL 33326 To register your foursome or to help us through volunteering the day of the tournament, please contact Monica Whiting at Monica.Whiting@nmss.org or at 954-731-4224.
NATIONALMSSOCIETY.ORG | 1-800-344-4867
15 CORAL SPRINGS SUPPORT GROUP: 20 YEARS OF SUPPORT, EDUCATION & COMMITMENT
Life is busy but did you know that volunteering has benefits? Volunteering with the National MS Society, South Florida Chapter gives you the opportunity to meet new friends, learn new skills and have fun! Many volunteers forget how much a difference they make in the community. Not only does it make you feel good, but your efforts are much appreciated by the MS community. The Society wants to make your volunteer time the most fulfilling. Every day we work with very dedicated volunteers who go above and beyond for the National MS Society. At this time we would like to recognize, Diane Malyska for her hard work and dedication. Diane commits 3 hours a week to assist with phone calls, labeling, and filing. Diane has become a huge part of the MS Family and we are grateful for her commitment; Diane THANK YOU! Volunteer TODAY!! To learn more about the opportunities available, contact Jaime Valdivia at 954-731-4224 or email jaime.valdivia@ nmss.org.
For almost 20 years, Michael Myette has been leading the afternoon support group in Coral Springs. Several years ago, Mindy Morrison and Cindee Horowitz joined Michael and they have been an integral part of the group’s success. Michael, Mindy and Cindee continually go above-and-beyond the call of duty. Whether they are sharing breaking news about what’s exciting in MS research, volunteering in the office or at one of our many fundraising events or staying connected with their support group members, their commitment to the Society’s mission, to the MS community and to each other is impressive. The Coral Springs support group is comprised of roughly 20 men and women who meet on the 3rd Tuesday of every month at 1:30 pm at the Coral Springs Medical Center. Additional contact information about this group may be found on page 16 of this newsletter. The entire South Florida Chapter office would like to acknowledge, congratulate and thank Michael, Mindy and Cindee for their positive attitudes, tireless dedication and tremendous contributions they have made – and continue to make -- to our friends in the South Florida MS community.
SUPPORT GROUPS BROWARD COUNTY
COLLIER
Coral Springs Afternoon Group 3rd Tuesday of month at 1:30 pm Coral Springs Medical Center Community Education Center, Class B 3100 Coral Hills Drive Coral Springs, 33065
Naples Day Social Group 1st Monday of month at 3:30 pm NCH Briggs Wellness Center 399 Ninth Street North Naples, FL 34102 Second Floor Lobby, Next to Subway Local Contact: Janice Bronstein (239) 774-7619 National MS Society Contact: Tanya Dannibale (239) 793-7009 tanya.dannibale@nmss.org
Contact: Cindee Horowitz AntCyd@aol.com Mindy Morrison mindywoo123@gmail.com Michael Myette (954) 643-9714 pmmyette@aol.com *Occasional speakers will appear. Members will be notified by evite or phone. NMSS Sunrise Evening Group 3rd Wednesday of month at 7:00 pm Health South 4399 Nob Hill Road, Sunrise, 33351 (Main Entrance to Conference Room 2) Alisa Loucado (954) 560-4931 ajtiny@bellsouth.net Sunrise Educational Meeting 3rd Tuesday of the month at 6:00 pm Sunrise Medical Group 12596 Pines Blvd. Pembroke Pines, FL 33027 RSVP to Monique or Cynthia (954) 437-4000
LEE COUNTY Cape Coral Day Group First Sunday of month at 3:00 pm Cape Coral Hospital 636 Del Prado Blvd. S., Room A Cape Coral, FL Dave Lane (239) 652-3602 lanenikken@comcast.net Martha Hannigan (239) 310-6866 capecoralmsgroup@gmail.com Ft. Myers Evening Group 3rd Thursday of month at 5:00 pm St. Hilary’s Episcopal Church 5011 McGregor Blvd. Fort Myers, FL 33901 Dave Lane (239) 652-3602 Email: lanenikken@comcast.net Karen Hart (239) 209-7549 or (239) 400-0529 kare4@comcast.net Social luncheon held 1st Thursday of month at 1:30 pm. Contact Karen Hart for details.
MS CONNECTION MIAMI DADE COUNTY
PALM BEACH COUNTY
South Miami-Dade Evening Group 2nd Thursday of month at 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
Central Palm Beach Group 2nd Wednesday of month at 7:00 pm Wellington Library 1951 Royal Fern Drive Wellington, FL 33414 RSVP Mara Stegmaier (561) 792-2400 or (561) 632-2403 marastegs@yahoo.com Joy Mercado (561) 234-0938 m.s.joy7@gmail.com
Miami-Dade Spiritual Group 2nd Thursday of month at 6:00 pm Doctors Hospital- Chapel 5000 University Drive Coral Gables, FL 33146 (2nd Floor, near elevator A) Ch. Ronald Gaudio (786) 308-3800 RonaldGa@baptisthealth.net
Boynton Beach Group 2nd Tuesday of month at 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
Miami Beach Group 1st Tuesday of the month at 7:00 pm Mt. Sinai Medical Center Founders Conference Ctr. 1st Floor, Warner Bldg, next to ER 4300 Alton Rd. Miami Beach, FL 33140 Gladys Fernandez (305) 534-8848 abbayayi@yahoo.com Ellie Klein Cardonne (305) 322-2299 ecardonne@bellsouth.net
*New Group* Palm Beach MS Center Support Group 2nd Wednesday of the Month, 5:00 631 N Congress Ave Ste 200 West Palm Beach FL 33407 Walter Martinez, MBA (561) 855-1647 PremiereResearchInstitute@gmail.com North Palm Beach Group 2nd Monday of month at 6:30 pm Borland Center 4885 PGA Blvd. Palm Beach Gardens, FL 33418 For Individuals with MS and Friends Nancy Decker (561) 622-4606 Palm West Group 3rd Monday of month at 6:30 pm September meeting at Olive Garden 5801 Lake Worth Rd. Greenacres, FL 33463 Howard Chiet (561) 795-5233 jjhakks@gmail.com
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
LEE COUNTY Cape Coral Wellness Facility Gentle Yoga: Mon. at 12:00 pm Aquatics: Tues. & Thurs. at 11:30 am Fort Myers Wellness Facility Gentle Yoga: Tues. & Thurs. at 11:30 am
BROWARD WELLNESS PROGRAMS
MIAMI-DADE
Coral Springs Medical Center Tai Chi: Sat. at 2:00 pm Kathy Byrne (954) 344-3344
Tai Chi with Tony **ON HOLD** Neuroscience Consultants 9090 SW 87 Ct. Suite 201 Miami, FL 33176
Tamarac Community Center Tai Chi: Mon. at 1:00 pm Chair Yoga Tues. at 11:30 am Meditation: Mon. at 12:30 pm Rose (954) 597-3643 Yoga Rosa Special Needs: Tues. & Thurs. at 12:00 pm Yoga: Mon. & Wed. 8:30 am, 12:00 pm, 5:30 pm Rosa Santana (954) 456-6077 Weston Yoga Registration is required please call Fabienne Grossman (954) 871-5222 for an appointment.
COLLIER COUNTY NCH Briggs Wellness Center Aquatics: Tues., at 9:30 am Yoga & Balance: Mondays at 2:15 pm
Please call Suhaill Ruano to RSVP. 1 800 FIGHT MS Email: suhaill.ruano@nmss.org Classes are free to individuals with MS who are registered with the South FL Chapter Body, Mind, & Spirit YOGA Instructor: Jannee Alt Class is on hold, however Jannee teaches a free yoga class at Bayfront Park on Mondays and Wednesdays at 6:00pm
PALM BEACH Tai Chi in 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
NATIONALMSSOCIETY.ORG | 1-800-344-4867
ADVOCACY
PUBLIC POLICY CONFERENCE
19 several of our South Florida Congressional Representatives in order to discuss and encourage their support of MS Research Funding with the National Institutes of Health (NIH), Congressionally Directed Medical Research Programs (CDMRP) and Food and Drug Administration (FDA). Our efforts to connect, build relationships and educate our local representatives about important policy decisions that affect our family, friends and neighbors living with MS will be on-going. We will visit our local representatives in the near future in their district offices and will encourage them to engage in our local fundraising and program events. We are looking for volunteers to join us and tell their story.
As a result of our meeting on Capitol Hill, U.S. Representative Debbie Wasserman Schultz (FL-23) and her team showed their support for MS Awareness Week by proudly wearing orange.
To learn more about the Advocacy program and important policy issues that affect the MS community, please visit www. nationalMSsociety.org/advocacy.
Hundreds of advocates from the National MS Society met from March 4 – 6, 2013 in Arlington, Virginia for the annual Public Policy Conference. Suhaill Ruano (Programs Director) and Diann Geronemus (Board of Trustees, Secretary) proudly represented the South Florida Chapter. The goal of this year’s Public Policy Conference was to raise awareness about MS and issues important to our population on Capitol Hill so that moving forward, we continue to thrive. In addition, meetings were scheduled with
Jeff Hamilton (Board Member, Mid Florida Chapter), Rachel L. Hall (Legislative Fellow for Representative Debbie Wasserman Schultz) and Diann Geronemus (Board Member & Secretary, South Florida Chapter).
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HELP US GO GREEN RECEIVE THE MS CONNECTION ONLINE. CALL 1-800-344-4867 OR 954-731-4224 TO SIGN UP TODAY
UPCOMING EVENTS May 17, 2013 CBM of America, Inc. MS Golf Tournament Presented by AutoNation
July 19 – 21, 2013 Women’s Retreat Summer 2013 Kids Camp & Teen Day