MS Connection Winter 2014
Winter 2014 edition of the MS Connection newsletter.
MS CONNECTION NEWSLETTER WINTER 2014 SOUTH FLORIDA CHAPTER SOUTH FLORIDIANS WORKING TOWARD A WORLD FREE OF MS INSIDE 04 THIS ISSUE 10 PROGRAMS IN YOUR COMMUNITY 17 LATEST RESEARCH FINDINGS & STUDIES 24 SELF-HELP GROUPS & WELLNESS PROGRAMS FUNDRAISING EVENTS 02 MS CONNECTION: WINTER 2014 A MESSAGE FROM THE CHAPTER PRESIDENT WHAT MIGHT YOU DO IN 2014 TO HELP CREATE A WORLD FREE OF MS? As we look forward to a new year, we are thankful for everything you helped us achieve in 2013. But there is so much more to be done on behalf of people with MS in South Florida and across the country. So I am appealing to you to participate in some of our activities in 2014 to help create a world free of MS. CONNECT WITH US ONLINE: www.nationalMSsociety.org/fls Email: FLS_Office@nmss.org 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! Ride a bike. Take a walk. Make phone calls. Donate your time. Raise money. Cheer someone on. Paint a house. Become an MS Activist. Attend a luncheon. Join a foursome. Sponsor an event. The National MS Society is a family and each member has different interests. We are highly productive when we work together and share our strengths. We embrace and value every effort and contribution our partners make, no matter how large or small. So please continue to be involved. Every effort counts. Your continued support and dedication bring us a large step closer to a world free of MS. Warm regards, Karen Dresbach President “One is not born into the world to do everything, but to do something.” – Henry David Thoreau NATIONALMSSOCIETY.ORG | 1-800-344-4867 03 COMPREHENSIVE MS CENTERS University of Miami MS Center of Excellence Department of Neurology Miller School of Medicine Kottil W. Rammohan, MD 1150 NW 14 St, Miami, FL 33136 (305) 243-6732 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. ÂŠ 2014 National Multiple Sclerosis Society, South Florida Chapter PARTNERS IN MS CARE Sunrise Medical Group Brian Steingo, MD 572 East McNab Road Pompano Beach, FL 33060 (954) 738-1700 901 Village Blvd, Suite 702 West Palm Beach, FL 33409 (954) 738-1700 Neuroscience Consultants Howard Zwibel, MD Bertha C. Fonseca, MD Carlos Ramirez Calderon, MD 4601 Ponce de Leon Blvd. Ste. 100 Coral Gables, FL 33146 (786) 219-3145 Cleveland Clinic Megan Rahmlow, MD Effrain D. Salgado, MD Virgilio D. Salanga, MD, MS 2950 Cleveland Clinic Blvd. Weston, FL 33331 (954) 659-5000 South Broward MS Clinic Islon Seliger, MD 12596 Pines Blvd, Pembroke Pines, FL 33027 (954) 437- 4000 04 FUNDRAISING EVENTS MS CONNECTION: WINTER 2014 MS GALA LUNCHEON PRESENTED BY DBS FINANCIAL Cirque Dreams for a Cure On January 22, 2014 the National Multiple Sclerosis Society will hold its 2014 MS Gala Luncheon, “Cirque Dreams for a Cure,” hosted by Chair, Ila Davidoff. The MS Hope Award will be presented to Alan S. Becker, founding shareholder of the law firm Becker & Poliakoff, P.A. who has supported the work of the National MS Society for more than 19 years. The event will begin at 10:00 am with cocktails, a fabulous Dreams Lounge and a silent auction featuring luxury goods and travel experiences, including Miami HEAT basketball tickets, tickets to popular Broadway shows, catered dinners, luxury resort stays and a Neiman Marcus shopping spree. Following the cocktail reception, guests will fill the main ballroom for a day of delectable food, entertainment and a moving testimonial demonstrating the reach and impact of multiple sclerosis on the lives of over 7,000 people and their families living in South Florida. Guests will also enjoy a spectacular performance by Broadway’s Cirque Dreams, the internationally acclaimed global entertainment brand, who will feature an array of awe-inspiring performance artistry with award-winning costume designs and entertaining characters. Each year the MS Gala Luncheon presented by DBS Financial Group welcomes over 1,000 guests from Broward, Miami-Dade and Palm Beach counties who come together in support of the fight against multiple sclerosis. This year’s spectacular affair is possible with support from Title Sponsor, DBS Financial Group/MassMutual, the official jewelry sponsor, J.R. Dunn Jewelers, official automobile sponsor, AutoNation, philanthropic partner, Bienenfeld, Lasek & Starr, LLC/Carol Lasek, Howard Bienenfeld & Mitchell Starr, Novartis Pharmaceuticals Corporation, Ultimate Software and JetBlue Airways. Individual tickets are available for $150 and above for premier seating. To learn more about sponsorships or to purchase a table and /or tickets to the most prestigious luncheon, please call 954-731-4224 or e-mail Monica.Whiting@nmss.org. NATIONALMSSOCIETY.ORG | 1-800-344-4867 05 FUNDRAISING EVENTS WALK MS Walk 2014 presented by Help us achieve record-breaking numbers at our 2014 MS Walks. Grab your family and friends and sign up for a Walk event in your neighborhood today. The money you raise funds research efforts, speeds new treatments and provides crisis financial support and local programs for people living with MS in South Florida. As always, there will be entertainment and fun for the whole family. Register today at www.mswalksouthflorida.org or call 954-731-4224 for more information. February 22, 2014 Naples Lowdermilk Park 1301 Gulf Shore Blvd Naples Fort Myers Centennial Park 2000 W 1st St Fort Myers February 23, 2014 Fort Lauderdale Huizenga Plaza 32 East Las Olas Blvd Fort Lauderdale Palm Beaches Waterfront Commons 101 South Flagler Dr West Palm Beach March 23, 2014 Boca Raton Boca Corporate Center & Campus 5000 T-Rex Ave Boca Raton Aventura Aventura Mall 19501 Biscayne Blvd. Aventura April 5, 2014 Coral Gables Merrick Park 405 Biltmore Way Coral Gables CHAMPIONS AGAINST MS The Walk MS events are not only a day to celebrate people living with MS and for those who care about them but also an educational opportunity for people with Multiple Sclerosis. For the second consecutive year, each Walk MS event will have a Champions Against MS tent. Housed under the tent will be an educational retreat designed specifically for people with MS. Special guests will receive an exclusive Champions Against MS t-shirt, the opportunity to relax before, during and after the walk and the privilege of meeting doctors, nurses and the South Florida Chapterâ€™s Program staff who will share local resources and information. Visit www.mswalksouthflorida.org to learn more about Walk MS. 06 FEBRUARY 28 MARCH 2, 2014 The Challenge Walk offers an incredible physical Charleston and philanthropic 2014 Challenge 2012 experience for members of the MS community living in the southeast. Participants raise $1,500 or more and walk 50 miles in three days through historic Charleston and along the beautiful South Carolina coastline. MS CONNECTION: WINTER 2014 Tools are available for registrants to support pre-event training and fundraising goals. The route is fully supported with catered meals, rest stops every few miles, support vehicles to provide transportation assistance and festivities to keep spirits high. Accommodations include a two night stay at the Wild Dunes Resort on Isle of Palms, SC. For more information or to register, contact Denise Dixon at (954) 731 - 4224 or visit www.ChallengeMS.org. FUNDRAISING EVENTS MS 5K RUN & KIDS FUN RUN If you love to run, join the Run to Stop MS movement by participating in our 4th Annual MS 5K Run & ¼ Mile Kids Fun Run at Merrick Park in Coral Gables on Saturday, April 5, 2014. There will be entertainment and fun for the kids at our MS Kids Fun Zone; so get your whole family involved. Registration for the 5K is $25 prior to race day and $35 day of the event. The ¼ Mile Kids Fun Run is $10 prior to race day and $15 day of. Don’t miss out and register now at www.runtostopmsflorida. org or call 1 800 Fight MS; 954-731-4224 for more information. NATIONALMSSOCIETY.ORG | 1-800-344-4867 07 along the way and inspiration from family and friends, some riders are surprised by how far they can go. FUNDRAISING EVENTS BIKE MS: MARCH 1-2, 2014 Bike MS is on the move! The 2014 Bike MS: Breakaway to Key Largo has moved to March. Participants can expect cooler weather and clearer skies for the 28th edition. On March 1 and 2, approximately 1,500 riders will depart from Florida International University to ride the South Florida installment of the nation’s premier cycling series. The Bike MS: Breakaway to Key Largo provides support vehicles along the route, rest stops every 8 to 10 miles and boasts 5 great meals. Participants are treated to finish line festivities and the Breakaway Pool Party Saturday evening. “I’ve been involved with the National MS Society since 2003, but last year was the first time I rode. What an awesome experience!” says Joan Shires, whose daughter, Jill, has MS. Participants can select a challenge that ranges from 50 to 175 miles. With so much support “I WAS QUITE NERVOUS AT THE STARTING LINE, NEVER HAVING DONE ANYTHING LIKE THIS BEFORE. IT WAS ALSO VERY EMOTIONAL FOR ME, BECAUSE I WAS RIDING FOR MY DAUGHTER, BUT THAT IS WHAT DROVE ME TO RIDE OVER 130 MILES IN ONE WEEKEND,” SAYS JOAN SHIRES. Bike MS is more than a ride—it’s anticipation, camaraderie, personal accomplishment, and the knowledge that you’re changing lives. “Every tour marks the culmination of another training season as team captain, a season that emphasizes how the greatest rewards come from sustained effort, not instant gratification,” says Never Give Up, team captain, Orlando Sosa. Persons with MS are encouraged to participate. To learn more about riding, volunteering, or being a Pedal Partner, visit www.msbikeflorida.org, then click on Event Details and select Info for Persons with MS. The Pedal Partners Program connects cyclists and people living with MS. This link fosters education, awareness, and friendship. Pedal 08 Venues: MS CONNECTION: WINTER 2014 BIKE MS: BREAKAWAY TO KEY LARGO QUICK FACTS: Dates: March 1 & 2, 2014 Day 1 Start Line: Florida International University – FIU Stadium Finish Line: Key Largo Resorts Partners are matched with a rider who does not have a personal connection to multiple sclerosis. Persons with MS can elect to share contact information and then meet their rider at the finish line on Sunday, March 2. What a meaningful way for a rider to receive their medal! In 2014, Bike MS is reintroducing the Virtual Rider option. Someone unavailable to ride or volunteer on Bike MS weekend can register as a virtual rider. Virtual riders can join a team, raise funds, and earn cool prizes. It is a great way to support the cause without breaking a sweat! Riders, virtual riders, and volunteers can register at www.msbikeflorida.org or by calling 954-731-4224. Day 2 Start Line: Key Largo Resorts Finish Line: Florida International University – FIU Stadium Registration: $40 Fundraising Minimum: $350 Website: www.msbikeflorida.org FUNDRAISING EVENTS MS GOLF TOURNAMENT TAKE A SWING OUT OF MS AND RESERVE YOUR FOURSOME TODAY! The CBM of America, Inc. MS Golf Tournament will host its 33rd Annual Celebrity Charity Golf Tournament on Friday, May 9th, 2014 at Boca Lago County Club. Proceeds from the event will benefit the NATIONALMSSOCIETY.ORG | 1-800-344-4867 09 FUNDRAISING EVENTS National MS Society, South Florida Chapter. The festivities will begin with the “CBM Pairing Party” at 7 p.m. on Thursday, May 8th, 2014 at Oceans 234, located at 234 North Ocean Blvd. Deerfield Beach. Guests will have a chance to mix and mingle with the celebrity guests participating in the tournament. Special items will also be auctioned off with all proceeds going to the National MS Society. The tournament kicks off at Boca Lago Country Club with registration at 7:30 am and a shotgun start at 8:30 am. Past Celebrity participants include Dan Carpenter, Troy Drayton, Reggie Givens, Darryl Williams, Joey Cornblit and many more. Following the tournament, an awards and recognition luncheon will be held. “I am very grateful for the support of our sponsors, volunteers and my family and friends who have helped make this event possible. The cause is a very worthy one and advance the Society’s mission and serves as inspiration for others to “join the movement” to create a world free of MS.” says Mike Stephens. “Proceeds from this event will in part, help us fund programs to assist our members in getting their lives back on track.” To learn more about sponsorships or to purchase your foursome to the most fun day of golf please call 954-731-4224 or e-mail Monica.Whiting@nmss.org. DO IT YOURSELF (DIY) FUNDRAISING Do It Yourself Fundraising is an opportunity for people with a deep commitment to the MS cause to raise awareness and critical funds for the MS Movement in new and creative ways. Our dedicated DIY webpage includes helpful resources to help you kick off a Do It Yourself activity and learn from others who are hosting their own. Activities can include golf tournaments, dinner parties, bake sales, endurance events, simply asking your friends, and more! So get started today, join the movement®, and together we can all help to create a world free of MS! For more information about Do It Yourself opportunities visit www.nationalmssociety.org/ fls or contact Jennifer Carroll at (954) 7314224 or email at email@example.com. 10 PROGRAMS & SERVICES MS CONNECTION: WINTER 2014 SELF-HELP GROUPS Self-help groups bring people together who share a common life experience for support, education and mutual aid. Benefits of participating in a self-help group include: learning new information and strategies for confronting problems; finding support from others; helping others; and feeling empowered and more self-confident in coping with challenges. There are 10 active groups throughout the 10 counties. DO YOU KNOW ABOUT ALL THE HELPFUL PROGRAMS AVAILABLE FOR YOU? CLINIC DAYS We have partnered with MS clinics throughout South Florida to provide quality service to South Floridians affected by the disease. During “Clinic Days,” our Programs team members are present at affiliated MS Comprehensive Care Centers to speak with patients. The MS centers provide a wide variety of services for multiple sclerosis patients, including: rr Diagnosis and second opinions of Multiple Sclerosis rr On-site MRI rr On-site Physical Therapy rr Ongoing medical management and symptomatic treatment rr Patient and family education rr Psycho-social evaluations, treatment and counseling rr Exercise programs rr Referrals for additional treatments (urology, ophthalmology) The South Florida Chapter office offers a wide variety of programs, services and resources for you and your family. Our Programs team – Suhaill, Ileana & Tanya – are here for you and hope you will take advantage of these wonderful resources. It’s as easy as picking up the phone and calling them at 954-7314224 or sending them an e-mail at FLS_ ProgramStaff@nmss.org. WELLNESS PROGRAMS Exercise can help individuals with MS to develop and strengthen muscles. The National MS Society partners with wellness centers throughout South Florida to provide physical therapy, including tai-chi, yoga and aquatics classes to persons with MS, free of charge. NATIONALMSSOCIETY.ORG | 1-800-344-4867 11 support. These sessions are offered over the phone or in person. If the need for long term counseling is determined, a referral will be made to affiliated counseling programs. Financial assistance can be offered for a certain number of sessions if insurance is not available or does not cover sessions. EDUCATIONAL PROGRAMS The South Florida Chapter offers a wide variety of educational programs for people living with MS and their families, including teleconferences, webcasts and events such as Dinner with the Doctor, Festival Hispano, Kidâ€™s Camp, Teen Expression, Newly Diagnosed Luncheon and more. FINANCIAL ASSISTANCE Crisis financial assistance is provided to clients who encounter a financial emergency. Funds are provided for utilities, housing, medication, and other necessities. Durable medical equipment is also loaned or purchased for those without resources. This vital assistance often prevents homelessness or other threats to basic needs. FAMILY SUPPORT MS is a disease that affects the whole family. This is why the South Florida Chapter offers many different programs that support parents, friends, spouses, children and grandchildren of people with MS. Our programs provide educational as well as social opportunities EMOTIONAL SUPPORT The MS Society offers short term emotional support. There are professional therapists on staff available to speak to any member who is going through a crisis or just needs some LOAN CLOSETS We partner with several medical supply companies throughout South Florida to accept donations and provide equipment to people MS, including walkers, canes, power wheelchairs, scooters, etc. (and one guest). Dinner is complimentary. Call 1-800-FIGHT-MS today to reserve your space. The registration deadline for these events is January 21, 2014. Tuesday, January 28, 2014 (6 pm- 8 pm) Creekside Restaurant 21180 Country Creek Drive Estero, FL 33928 Thursday, January 30, 2014 (6 pm â€“ 8 pm) Renaissance Boca Raton Hotel 2000 NW 19th St. Boca Raton, FL 33431 PROGRAMS & SERVICES DINNER WITH THE DOCTOR Do you have unanswered questions about MS, symptom management or the newest drug therapies? Come ask your questions (you may ask them anonymously) and hear the latest information on MS research and drug therapies from leading local neurologists. This event is open to men and women with MS 12 PROGRAMS & SERVICES MS CONNECTION: WINTER 2014 NEWLY DIAGNOSED LUNCHEON FEBRUARY 8, 2014 If you or someone close to you has recently been given a diagnosis of multiple sclerosis, you probably have a lot of questions and concerns. Thatâ€™s why we created this confidential, intimate event where you can receive important information and ask your questions (openly or anonymously) in a safe environment. If you have been newly diagnosed with MS, you are welcome to bring one guest to dine with Dr. Bertha Fonseca and Jennifer Smrtka, RN, MSN, ANP-C, MSCN, MS Nurse Practitioner as they discuss multiple sclerosis. Dr. Fonseca and Jennifer will provide up-todate educational information about MS and address questions. Both woman are beloved by the MS community. They are smart, understanding and considerate and they have the ability to explain complicated topics in a clear and concise manner. If you are interested in attending this event, contact Tanya Dannibale at 954-731-4224 or at Tanya.Dannibale@nmss.org. 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. NATIONALMSSOCIETY.ORG | 1-800-344-4867 13 rr Friday, March 7, 2014 -- Miami rr Friday, September 12, 2014 -- Miami rr Saturday, July 12, 2014 â€“ Cape Coral (2 homes) PROGRAMS MS SERVICE DAY: CALL FOR VOLUNTEERS AND SPONSORS MS Service Day is a volunteer-driven day of service organized by the National MS Society South Florida Chapter. Teams of volunteers complete projects for families living with multiple sclerosis. Due to fatigue or limited mobility, keeping up with daily household maintenance can be challenging and overwhelming for many with MS. The goal of the 3rd Annual MS Service Day program is to make life easier for people living with MS by making much needed improvements to their home in one day. Our goal is to complete work on several homes throughout 2014 and we are looking for volunteers and sponsors to join us! SPONSORS We are looking for others to join the National MS Society and Home Depot to help cover the cost of the home improvement projects. Sponsorship packages are available and include substantial promotional opportunities. If you would like more information about volunteering or sponsoring a home, please contact Suhaill Ruano at 954-731-4224 or at Suhaill.Ruano@nmss.org. VOLUNTEERS We need volunteers to help us complete various projects, including general cleaning, yard work, painting, repairs, organizing and more. Here are the dates and general locations of some of our MS Service Day events: 14 PROGRAMS MS CONNECTION: WINTER 2014 FESTIVAL HISPANO: MAY 3, 2014 Aproveche la oportunidad de obtener libre acceso a los proveedores de atención de salud, recursos de la comunidad y mucho más en el Festival Hispano 2014. El evento está abierto a las personas con EM que hablan español o son bilingües. Usted puede registrar un máximo de 4 personas por familia. ¡También tendremos actividades para niños de 8 a 16 años! Si desea quedarse en el hotel tenemos habitaciones disponibles a un precio reducido. Festival Hispano se llevará a cabo el Sábado, 3 de mayo 2014, de 9:00 am - 2:30 pm en el hotel Marriott Miami Airport, 1201 NW LeJeune Road, Miami, FL 33126. El cupo es limitado, llamar al 1-800-FIGHT-MS (línea 3 para español) registrese hoy. Take advantage of your chance to get FREE access to health care providers, community resources and more at the 2014 Festival Hispano. The event is open to people with MS who speak Spanish or are bilingual. You may register up to 4 people per family. We will also have activities for children 8-16 years old. If you want to stay in the hotel we will have rooms available at a reduced price. Festival Hispano will be held on Saturday, May 3, 2014 from 9:00 am – 2:30 pm at the Miami Airport Marriott, 1201 NW LeJeune Road, Miami, FL 33126. Space is limited so call 1-800-FIGHT-MS (dial 3 for Spanish) to register today. NATIONALMSSOCIETY.ORG | 1-800-344-4867 15 PROGRAMS KID’S CAMP 2013 This year’s Kid’s Camp started off with a bang: the Endangerquest scavenger hunt. Twenty-eight kids were able to negotiate through Jungala in a test of their combined wildlife knowledge and ability to solve puzzles. Groups worked together to compete to reach the conservation Trunk of Knowledge at a final destination using clues, communication and navigational skills. A chest full of treasure awaited the winners! Kids were steps away from the beautiful tigers of Busch Gardens and were able to have one-on-one time with the zoo keepers and watch them feed the animals. Educational activities about MS included watching Timmy’s Journey and kids were able to open up about what they experience at home. The kids found a sense of commonality with other kids that have parents with MS. Kid’s Camp is a program for kids, ages 8 - 12 years old, whose parent, grandparent or guardian has MS. The program is designed for kids to have fun, make friends and explore ways of dealing with the daily pressures of living with MS. PROGRAMS SCHOLARSHIP DEADLINE: JANUARY 15, 2014 MS shouldn’t stand in the way of an education. This is why the National MS Society's scholarship program exists — to help highly qualified students who have been diagnosed with MS or who have a parent with MS achieve their dreams of going to college. 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 scholarship application submission deadline is January 15, 2014. For detailed guidelines and application information visit www.scholarsapply.org/mssociety/ or contact Suhaill Ruano at (954) 731-4224 or at Suhaill.Ruano@nmss.org. 16 MS CONNECTION.ORG: A GREAT WAY TO CONNECT WITH OTHERS IN 2014 What if everyone living with MS could connect with one another? Or with those who research ways to stop, restore or end the disease? Or those who provide medical care or treat the symptoms of MS? What if everyone who cares about MS could join together in one place? Maybe, by connecting all of our knowledge, and hope, and experience, we can gain a new understanding of how to move forward. More than 13,000 individuals are connecting with each other, with resources, and with expert information â€“ learning, sharing and supporting one another around the most important issues that shape our world â€“ helping each other not just to cope, but to live our best lives. MS CONNECTION: WINTER 2014 TELECONFERENCE SERIES 2014 Join us for a free series of informative conference calls on a variety of topics for people living with MS and their families. Top 10 List in MS | February 11, 2014 | 7:30 - 8:30 PM This teleconference will highlight the top happenings in the field of MS, looking at diagnosis, current treatment options, rehabilitation therapy and more. Speaker: TBD Overcoming Cognitive Challenges | May 13, 2014 | 7:30 - 8:30 PM Memory problems, difficulty concentrating and slowness in processing information are all cognitive challenges associated with MS. In this teleconference participants will learn about the role of cognition in MS as well as information on cognitive rehabilitation, and tips to help manage cognitive symptoms. Speaker: Kristine Herfkens, PhD Alternative Therapies in MS | August 12, 2014 | 7:30 - 8:30 PM Alternative therapies are difficult to define and can include anything from drugs and diet to food supplements, mental exercises and life-style changes. This teleconference will help identify and discuss alternative options. Speaker: Sibyl E. Wray, MD To register for the teleconferences, call 1-800-FIGHT-MS. At www.MSConnections.org you will find: rr Live chat rooms rr Online Self-Help Groups rr Additional connection opportunities rr Tips from the experts rr And more NATIONALMSSOCIETY.ORG | 1-800-344-4867 17 Members of the Golden Circle receive the following unique benefits: rr Invitations to private receptions and briefings with scientists, clinicians and organization leadership. rr Conference calls regarding the latest progress in MS research directly from world-renowned scientists, and to pose questions directly to the researchers on the calls. rr Unmatched access to breaking research news. rr The opportunity to connect with other Golden Circle members â€“ people who share a commitment to creating a world free of MS. RESEARCH ARE YOU INTERESTED IN ACCELERATING RESEARCH ON MS? The South Florida Chapter of the National MS Society invites you to become a member of the Golden Circle â€“ a special place for people with a commitment to achieve a world free of multiple sclerosis. On behalf of everyone affected by multiple sclerosis, the National MS Society has created a membership program acknowledging the generous support of individuals who contribute an annual gift of $1,000 or more. Fast Forward, founded by the National MS Society, focuses on expediting the drug development process, bridging the gap between promising discoveries and the commercial expertise and funding to move them forward. Fast Forward provides critical funds to academic groups and emerging biotechnology and pharmaceutical companies involved in drug research and development. By connecting people, ideas, and resources, promising drug treatments can now break through barriers, move through the pipeline, and enter clinical trials - faster. 18 MS CONNECTION: WINTER 2014 RESTORING WHAT’S BEEN LOST We must restore all function that has already been lost to nervous system damage. NOW stands for “no opportunity wasted” and is the National MS Society’s commitment, campaign and comprehensive strategy focused on three distinct results: ENDING MS FOREVER We are looking toward the future and are working to eliminate MS from our world and prevent it from ever occurring in the future. For more information about Golden Circle, Fast Forward or the NOW campaign contact Jennifer Carroll at (954) 731-4224 or Jennifer.Carroll@nmss.org. STOPPING THE DISEASE We have to stop all disease activity and prevent further progression for people who already have MS. RESEARCH DR. BRUCE BEBO PRESENTS RESEACH UPDATES IN SOUTH FLORIDA In December, the South Florida Chapter had the great privilege of hosting Dr. Bruce Bebo, Associate Vice President for Discovery Research at the National MS Society. Dr. Bebo spoke to gatherings of people with MS, Golden Circle and Lawry Circle members. His presentation addressed the National MS Society’s commitment and the tremendous potential in research development for Progressive MS. Dr. Bruce Bebo directs the Society’s diverse portfolio of biomedical research focused on stopping MS, restoring function, and ending this disease forever. He came to the Society with 25 years of experience in biomedical research. His career in MS research is inspired by his mother, who was diagnosed with progressive MS when he was young. For more information about research, Golden Circle, Lawry Circle or how to support the MS NOW campaign, contact Jennifer Carroll at (954) 731-4224 or at Jennifer.Carroll@nmss.org. NATIONALMSSOCIETY.ORG | 1-800-344-4867 19 focus by the National MS Society and the Progressive MS Alliance – global organizations working together to connect resources and experts around the world to find the answers and develop the solutions to end progressive MS. "We are accelerating the knowledge and collaboration needed to identify solutions for people affected by progressive MS," says Timothy Coetzee, PhD, Chief Advocacy, Services & Research Officer. “Our partnership with MSDF will connect researchers working to stop MS progression to each other and to us.” MSDF – a project of ACP, which creates the site’s content and directs its outreach activities – was established in 2012 with an unrestricted grant from founding donor EMD Serono. It provides a free, neutral venue where members of the MS research community can learn about cutting-edge findings, participate in discussions, and access professional and research resources. “We are delighted to receive this support for MSDF from the National MS Society,” said Robert McBurney, Chief Executive Officer of ACP. “Beyond providing the MS Discovery Forum with resources to increase its reporting to the research community on progressive MS, this grant brings ACP and the National MS Society closer together in a complementary effort to highlight this area of unmet medical need and to stimulate research efforts to answer important questions about progressive MS.” RESEARCH NATIONAL MS SOCIETY PARTNERS WITH ACCELERATED CURE PROJECT’S MS DISCOVERY FORUM TO DRIVE RESEARCH CONNECTIONS FOR PROGRESSIVE MS Society providing funding for online forum for researchers and clinicians The National Multiple Sclerosis Society is partnering with the Accelerated Cure Project’s (ACP) Multiple Sclerosis Discovery Forum (MSDF) – an interactive online community and information portal for researchers and clinicians – to develop resources and content focusing on progressive MS. Promoting engagement by the research community on issues in progressive MS is one aspect of a multifaceted approach to increasing progress in this underexplored area of research. There has been substantial progress and FDA-approved therapies that can impact the underlying disease course in people with the more common, relapsing, forms of MS. However, none of these can stop progression or reverse the damage to restore function, which are critical for everyone with MS including those with progressive forms. The Society is awarding MSDF a two-year, $150,000 grant that will enable it to focus additional coverage and resources on progressive forms of MS, an area that is receiving strategic 20 RESEARCH MS CONNECTION: WINTER 2014 INTERNATIONAL PROGRESSIVE MS ALLIANCE significant progress for progressive MS has eluded researchers for decades. Experts agree that the potential to succeed is greater by pooling resources and knowledge from across the globe. Researchers recently met in Milan, Italy and identified five research priorities to focus on: • Identifying Targets and Repurposing Opportunities for Progressive MS • Experimental Models for Preclinical Evaluation of Therapies • Strategies for Phase II Clinical Trials • Clinical Outcome Measures and Trial Design • Symptom Management and Rehabilitation Almost 200 thought leaders from around the world have joined forces to create the International Progressive MS Alliance, an organization dedicated to develop solutions to end progressive MS. While there are 10 drug therapies for people with relapsing-remitting forms of MS, The Alliance is dedicated to advancing progress as quickly as possible and is already soliciting proposals from the MS research community. For more information about the International Progressive MS Alliance visit www. EndProgressiveMS.org. NATIONALMSSOCIETY.ORG | 1-800-344-4867 21 ancestry. Although the prevalence rate of MS in people of Hispanic / Latino descent is relatively high, the MS related genetics of this population has not been extensively studied. 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. 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. To participate in the study please contact Patricia Manrique at 305-243-4028 or firstname.lastname@example.org; for more information about this study, contact Ileana Martinez at 954-731-4224 or Ileana. Martinez@nmss.org. RESEARCH UNIVERSITY OF MIAMI: LOOKING FOR PARTICIPANTS FOR A STUDY ON GENETICS IN HISPANICS The National MS Society has committed nearly $1 million to fund a genetics study on Hispanics and multiple sclerosis at the John P. Hussman Institute for Human Genomics at University of Miami. The research grant study will explore genes that make people of Hispanic/ Latino descent susceptible to developing MS. Both environmental and genetic factors combine to make people susceptible to MS. Most genetic studies in MS have examined genes in Caucasians of Northern European 22 ADVOCACY MS CONNECTION: WINTER 2014 2014 LEGISLATION: IMPACT ON THE MS COMMUNITY The Florida Government Relations Committee (GRC) has been busy discussing policy and strategy for the 2014 state legislative session. Florida has the second highest number of uninsured in the country—almost a quarter of the population! The National MS Society will encourage Medicaid Expansion in the Sunshine State and will continue to reach out to members of the Legislature and Governor Scott’s office to ensure that all members of the MS Community are able to access appropriate and necessary health care. Six hundred and eight bills have been filed for the 2014 session in Florida (213 in the Senate, 395 in the House). The Southeast Regional Advocacy team continues to analyze and monitor the impact that proposed measures could have on the MS Community. Legislation recently discussed includes: 1. Removing the requirement to prove a permanent disability to renew a handicapped parking placard / plate. Once an individual has provided necessary documentation verifying a permanent disability, he or she would simply renew the placard / plate without the burden of “reproving” his or her permanent disability. Measure is pending. 2. Telemedicine is another issue that the legislature is exploring. The measure is pending. 3. A bill to increase disability awareness and education would require each school district board to provide history and awareness instruction in all K-12 schools. Guest presenters with disabilities may augment the curricula to share their experiences. This bill may also create a disability history and awareness advisory council. The measure is pending. 4. A recently filed bill regarding voter registration would require the department of highway safety and motor vehicles to automatically register individuals to vote or update his or her voter registration when obtaining a state issued ID or driver’s license. The bill would give people the option to opt out of automatic registration. The Florida Legislature will reconvene on March 4, 2014, which coincides with MS Awareness Week. The National MS Society will be there to increase awareness about MS and its impact NATIONALMSSOCIETY.ORG | 1-800-344-4867 23 VOLUNTEER CORNER on individuals and families, and to ensure that policy is moving in the right direction for the MS Community. As health care is being reformed both nationally and within the state, we are monitoring changes, working toward improving the delivery and access of care and building relationships with policymakers. We encourage you to reach out to your State Representative and State Senator and introduce yourself and share your story. If you are unsure who your representative is, you can find that information here: http://www.myfloridahouse. gov/sections/representatives/myrepresentative. aspx. If you would like more information on becoming an MS Activist, please contact Suhaill Ruano at (954) 731-4224 or at Suhaill.Ruano@nms.org. “VOLUNTEERS DO NOT NECESSARILY HAVE THE TIME; THEY JUST HAVE THE HEART.” - ELIZABETH ANDREW The National MS Society, South Florida Chapter is looking forward to a very active 2014 event season! If you are interested in volunteering for any of the upcoming events – MS Gala Luncheon, Walk MS, Bike MS or MS Golf Tournament, please visit our volunteer page at www.nmssfls. org and click on “volunteer.” Encourage your company or school to volunteer as a group! A great program to help give back is MS Service Day. If you would like to learn how you can dedicate your time and talent towards a meaningful day, please contact Suhaill Ruano at 954-731-4224 or email her at Suhaill.Ruano@nmss.org. 24 SELF HELP GROUPS MS CONNECTION: WINTER 2014 *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.email@example.com NMSS Cape Coral Day Group 1st Sunday of month, 3:00 pm 636 Del Prado Blvd. South Room A Cape Coral, FL 33990 Dave Lane: (239) 652-3602 firstname.lastname@example.org Martha Hannigan: (239) 939-3980 email@example.com NMSS Ft. Myers Evening Group 3rd Thursday of month, 5:00 pm St. Hilary Episcopal Church 5011 McGregor Blvd. Fort Myers, FL 33901 Dave Lane: (239) 652-3602 firstname.lastname@example.org Karen Hart: (239) 209-7549 Kare4FL@gmail.com Social luncheon held 1st Thursday of month Contact Karen Hart for details BROWARD COUNTY NMSS Coral Springs Afternoon Group 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 email@example.com Michael Myette: (954) 227-4738 firstname.lastname@example.org COLLIER/ LEE COUNTY NMSS Naples Group (Social Group) 1st Monday of Month, 3:30 pm Briggs Wellness Center-Briggs Conference Room, 2nd floor by Subway 399 Ninth Street North Naples, FL 34102 MIAMI DADE COUNTY NMSS Miami-Dade Spiritual Self-Help Group 2nd Thursday of month, 6:00 pm Doctors Hospital 5000 University Drive NATIONALMSSOCIETY.ORG | 1-800-344-4867 25 PALM BEACH COUNTY NMSS West Boca Evening Group *Must call or e-mail SHG leader to RSVP and receive confirmation on meeting *Speakers/Specialists will be announced by Self-Help 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 email@example.com NMSS North Palm Beach Group 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 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 firstname.lastname@example.org Eliot Reinstein: (561) 302-6913 Eliotr7@comcast.net Palm West MS Self-Help Group 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 Coral Gables, FL 33146 Go to the Chapel on the second floor near Elevator A Chaplain Ronald Gaudio: (786) 308-3800 email@example.com NMSS South Miami-Dade Evening Group 2nd Thursday of month, 7:00 pm Doctors’ Hospital - Cafeteria 5000 University Drive Coral Gables, FL 33146 Maria Zaldivar : (305) 710-2210 firstname.lastname@example.org Kirstie Bray: (305) 984-7501 email@example.com NMSS Miami Beach Group 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 firstname.lastname@example.org Ellie Klein Cardonne : (305) 322-2299 email@example.com Café con Leche Conversation and Support for People with Multiple Sclerosis National Multiple Sclerosis Society offers once a month a telephone Self-Help Group in Spanish 2nd Tuesday of the Month, 2:00-3:30 pm For more information or to subscribe call 1-800-344-4867, option 3 26 rr aquatics rr yoga rr chair yoga rr meditation rr tai chi MS CONNECTION: WINTER 2014 a range of abilities -- that help to maintain that quality lifestyle, including: BROWARD 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: firstname.lastname@example.org 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 WELLNESS WELLNESS PROGRAMS TO START YOUR YEAR OFF RIGHT Have you been wanting to try a wellness program but haven’t quite gotten around to it? It’s a new year and a new chance to treat yourself by joining a local wellness program. It’s simple: just call 954-731-4224 or e-mail our Programs team at FLS_ProgramStaff@nmss.org and they will be happy to get you started. Wellness of body, mind and spirit is the key to leading a healthy and active lifestyle while living with MS. The South Florida Chapter offers a variety of activities free of charge – for COLLIER/LEE COUNTY NCH Briggs Wellness Center Aquatics: Tuesday at 9:30 am Yoga and Balance: Monday at 2:15 pm NATIONALMSSOCIETY.ORG | 1-800-344-4867 27 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 HELP US GO GREEN RECEIVE THE MS CONNECTION ONLINE. CALL 1-800-344-4867 OR 954-731-4224 TO SIGN UP TODAY 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 National Multiple Sclerosis Society South Florida Chapter 3201 W. Commercial Blvd. Suite 127 Ft. Lauderdale, FL 33309 January 22, 2014 MS Gala Luncheon January 28, 2014 Dinner with the Doctor – Estero January 30, 2014 Dinner with the Doctor – Boca Raton February 8, 2014 Newly Diagnosed 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 3 – 9, 2014 MS Awareness Week March 7, 2014 MS Service Day March 23, 2014 Walk MS: Aventura Walk MS: Boca Raton April 5, 2014 Walk MS: Coral Gables Run to Stop MS 5K & Kids Fun Run: Coral Gables May 3, 2014 Festival Hispano May 9, 2014 MS Golf Tournament