GEORGIA CHAPTER
MOVING TOWARD A WORLD FREE OF MS | VOLUME 4• EDITION 2
2012 Annual Meeting & Research Dinner & Volunteer of the Year CelebratioN Thursday, January 19, 2012 continued on page 6.
In this Issue:
Preparing for Pregnancy Page 10
Teleconference Series Page 12
MS Awareness Week Page 20
1-800-344-4867 Publication of the National Multiple Sclerosis Society Georgia Chapter • 1117 Perimeter Center West, Ste. E101 • Atlanta, GA 30338 Chairman • William J. Holley II Secretary • Diane Flannery Treasurer • Keith Keller Chapter President • Roy A. Rangel MS Connection Editor • Jared Miley The National Multiple Sclerosis Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The National Multiple Sclerosis Society assumes no liability for the use of contents of any product or service mentioned. Information provided by the Society is based upon professional advice, published, experience and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. The National Multiple Sclerosis Society recommends that all questions and information be discussed with a personal physician. The National Multiple Sclerosis Society‘s mission is to mobilize people and resources to drive research for a cure and to address the challenges of everyone affected by MS.
Are you looking for a Self Help Group or Peer Supporter in your community? Whether you just received a diagnosis of MS or have been living with it for a long time, the National MS Society, GA Chapter has great programs available to you where you can find support and experiencedbased tips on how to live a productive and happy life with MS. Self Help Groups meet regularly for educational and social purposes, allowing members to express feelings and provide support to one another. Members share a belief that positive personal change can happen through individual effort with the support of others. Peer Supporters are trained individuals living with MS, or are a family member of someone living with MS. Via the telephone, our Peer Supporters offer information, companionship, emotional support and encouragement to peers living with MS. There is no cost to participate in a Self-Help Group or Peer Support Program. To request services or if you are interested in starting a Self-Help Group or becoming a Peer Supporter, call the Georgia Chapter Office at 1-800-344-4867 or e-mail Stephanie at stephanie.shapiro@nmss.org See complete listing of Self Help Groups in Georgia on Page 25
© 2012 National Multiple Sclerosis Society, Georgia Chapter
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Chairman of the Board: A Letter of introduction
I begin my term as 2012 Chairman of the Board of the National MS Society – Georgia Chapter with great optimism. Together with the National MS Society, the Chapter is committed to create a world free of MS and we have a viable plan to fund the critical research projects necessary to attain our goal. The Georgia Chapter has provided me wonderful volunteer opportunities for the last 21 years. I have been a rider and fundraiser for Bike MS events beginning in 1990, have participated in numerous other MS fundraising activities, joined the board in 1994 and served in various board roles. During those 21 years, I have seen amazing advances in MS treatment, MS programs and MS research. But our job is not done. As your current board chair, I pledge to lead the charge in Georgia to promote our vision and capitalize on business and financial opportunities for increased revenue to pursue the four key priorities of the National MS Society Strategic Plan: •Increase the number of MS specialists and access to specialized MS care in rural areas and for others who are underserved •Increase revenue from and retention of our top donors, event participants, team captains, and corporate partners through consistent, exceptional engagement, support and stewardship •Enhance skills and tools to support life-long relationships with donors and fundraisers •Align resources, systems, processes and structures to increase our efficiency and effectiveness. One exciting change is already well underway. To increase efficiencies, reduce redundancies and raise more money for research, we have joined our neighboring chapters in what has officially become the National MS Society’s Southeast Region. Our region is one of six regions in the United States and is comprised of 8 states and 10 chapters. Collectively, we will work to raise $24 million, to deliver important client programs and to engage the talents of donors, medical professionals, researchers, clients, volunteers and staff to creatively address MS issues, advocate for improved public policy and create a world free of MS. I welcome and embrace everyone for whom our organization exists and particularly welcome discussion on how we all can work together for the benefit of the 9,000 Georgians living with MS. As I have experienced firsthand, the dedicated team at the Georgia Chapter office is ready to assist you with opportunities to get involved. Please join me in joining the MS movement. Sincerely, William J. Holley, II Chairman of the Board, National MS Society - Georgia Chapter TOLL FREE NUMBER 1 800 344 4867
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CHAPTER INFO
New Faces at the Georgia Chapter Stephanie Shapiro Services Manager
It is with great pleasure and excitement that I introduce myself to you as your new Service Manager here at the National MS Society, Georgia Chapter! Born and raised in Upstate NY, I have been a “Georgia Peach” for the past eleven years. I moved from Upstate New York to Savannah in 2000, where I worked as the Program and Membership Manager for the Girl Scouts. While I love Girl Scout cookies and s’mores, I am not a fan of camping or snakes. Needless to say, my tenure there was short and within two years I was happily transplanted to Atlanta. And while I still cheer for the Buffalo Bills, and crave “real” chicken wings, I am happy to be a southern girl and absolutely, without a doubt, do not miss the snow! For the past nine years, I have been fortunate to work and volunteer with a number of wonderful nonprofit agencies and government offices focused on serving individuals with physical, developmental and emotional disabilities. My background has been primarily working 4
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with family and community based organizations assisting individuals diagnosed with a life modifying illness or disease. I have worked with the Governor’s Council on Developmental Disabilities advocating and creating awareness on needed funding as well as support services for families and care providers. Additionally, I have served on the Board of Directors for the United Mitochondrial Disease Foundation, and have worked with the Emory Healthcare system providing educational services to students and interns, as well as emotional support to patients and their families. I am passionate in assisting people to find their new direction: creating bridges within the community, developing new life plans, and finding a reason to smile, even if it is just for a few seconds. I am excited to bring my professional and personal experiences here to the Georgia Chapter and to continue to learn from all of you! So what is “Service Management?” As your Service Manager, I work with you and your loved ones in managing life with MS. MS is not just about the person living with MS, but the entire family. It affects ALL of us. I am here to help and guide YOU, whether you are an individual living with MS, a family member or loved one caring for a person living with MS, I can assist you with finding and accessing community resources, navigating the Medicare/Medicaid/SSDI system, understanding your rights in the workplace, becoming a self-advocate, and planning for your future. I can also guide you through a crisis, and, when necessary, refer you to case management. All calls are confidential and I encourage you to call the Georgia Chapter office (800-344-4867)
CHAPTER INFO
New Faces at the Georgia Chapter if you are in need of educational or emotional support, or if you simply need someone to listen.
Laurie Palmer Walk MS Development Manager
Although I have only been here a short time, I have already learned so much from all of you. I look forward to hearing your stories of inspiration, and being a small part of your journey.
Katie Bishop Bike MS Development Coordinator My name is Laurie Palmer and I am the new Development Manager and the contact for all things Walk MS for the Georgia Chapter. I am excited to be joining the National MS Society team and look forward to meeting all of you at one of this spring’s Walk MS events!
My name is Katie Bishop and I am very excited to begin working with the Georgia Chapter as the Bike MS Coordinator. I graduated from Kennesaw State University with a Bachelor of Science in Communication and moved to Colorado to work as a coordinator at a Denver based university. In November of 2010, my husband and I relocated to Florida, and I started my career with the National MS Society as an Event Coordinator at the North Florida Chapter. I am so excited to have been given the opportunity to join the Georgia Chapter and move back home to Atlanta.
While I may be new on staff, I am not a stranger to the Society. My relationship with the Georgia Chapter began in the summer of 2009 when I interned with the special events department, working closely with the team that I now am a part of. Additionally, I have volunteered for the past two years for Bike MS, serving on the event committee in 2011. I am a graduate of the University of Georgia with a degree in marketing from the Terry College of Business, and I have been working in Atlanta since graduation. I am so excited to join this amazing Chapter and work together in the fight against MS. I am honored to become a member of this staff and look forward to this new adventure. Feel free to contact me at laurie.palmer@nmss.org. TOLL FREE NUMBER 1 800 344 4867
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ANNUAL MEETING
ADVANCES IN MS RESEARCH The National MS Society, Georgia Chapter invites you to attend the Annual Meeting & Research Dinner & Volunteer of the Year Celebration JW Marriott Hotel Buckhead 3300 Lenox Road, NE s Atlanta, Georgia 30326 Thursday, January 19, 2012 ~ 5:30 - 7:30pm Please join theprogram National MS Georgia Chapter for a dinner This hasSociety, been generously supported bycelebration to learn about cutting edge research in MS and honor the outstanding community members, Teva Neuroscience. volunteers, and leaders who are doing something about MS now. To register for this program please call 800-344-4867, Option 2 or visit our website www.nationalmssociety.org/gaa This program has been generously supported by Novartis and Teva Neuroscience 6
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ANNUAL MEETING
VOLUNTEER HALL OF FAME 2011 Join us in honoring this year’s inductees into the Volunteer Hall of Fame at the ANNUAL MEETING & RESEARCH DINNER Thursday, January 19, 2012 ~ 5:30pm-7:30pm
VOLUNTEER OF THE YEAR 2011 – SELF HELP GROUP LEADER Towanda Cooper Bartow County Self-Help Group
VOLUNTEER OF THE YEAR 2011 – SERVICE PROVIDER OF THE YEAR Paul McDaniel Trivest Construction
VOLUNTEER OF THE YEAR 2011 – CHAPTER PROGRAMS Jodi Giles Community Program Coordinator - Savannah
VOLUNTEER OF THE YEAR 2011 – MEDICAL PROFESSIONAL Robert H. Spector, MD Neuro-Ophthalmologist
VOLUNTEER OF THE YEAR 2011 – FUNDRAISER Jeanne and Dan Yuhaschek Team Marge at Large
VOLUNTEER OF THE 2011 Dave Small Captain - Team Cox
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MS SERVICE DAY 2012
Join us for our 3rd annual MS Service Day! 1 day, 10 homes, 150 volunteers What a difference a day makes! Register online as a volunteer at http://bit.ly/MSServiceDay2012
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In partnership with
LIVING WITh MS
PIcTuRING DISAbILITY by DONNA fELLMAN Twenty years ago, in August 1991, when my children were six, four, and 11 months old, I was diagnosed with MS. My youngest child, Kaija, was taking her first steps while I was losing the ability to walk. I used a cane, but soon needed crutches, and by the time Kaija was two, I was using a wheelchair most of the time. Last year, in a college photography class, Kaija was given the assignment to do a photographic essay. She chose “Disability” as the subject and framed images that showed her development as a little girl with portrayals showing the progression of my disability. There is a photo of her little shoes with my cane, representing her learning to walk alongside my difficulty walking. Included is a sequence of shoes to illustrate her growing up, my mobility aids, our legs together, her self-portrait in a wheelchair, and other images depicting her memories and perceptions of disability. We talked about what it was like for her and her brothers growing up. Looking at her little red shoes, I said to Kaija that I had never held her hand and walked with her. Her reply: “I always had your lap.” Donna Fellman lives in rural Maine.
Copyright Kaija Fellman
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LIVING WITh MS
PREPARING FOR PREGNANcY
Meds, pregnancy and MS None of the disease-modifying drugs (DMDs) are approved for use during pregnancy, and most should not be taken for a few months beforehand. “The risk time is when you’re attempting to conceive,” noted Dr. Green. Plan a discussion with your neurologist about when to stop DMDs—and when, after delivery, to begin them again. “Until recently, most studies were neutral about whether breastfeeding was protective in preventing relapses,” says Dr. Green. “But a new study quotes a beneficial effect on relapse. People with non-aggressive disease may be able to wait to resume DMDs, which can’t be taken while nursing.”
Julie Hammond, diagnosed with MS in 2002, with son Travis. Courtesy of Greater New England Chapter.
The good news about planning a pregnancy when you have MS is that there’s no evidence that MS has any effect on fertility; pregnancy usually reduces exacerbations (although flares do tend to increase postpartum); and good outcomes are the norm. Nevertheless, making the decision to get pregnant can be complicated, primarily because of the physical challenges of MS, says Barbara Green, MD, director of the West County MS Center, St. Louis. “I also suggest women think about and discuss with their partners the emotional and financial challenges of raising a child, which could affect work and managing the disease.” 4 | JOIN THE MOVEMENT: nationalMSsociety.org 10 | JOIN THE MOVEMENT: nationalMSsociety.org
Include any symptom-management medications in the discussion with your doctor. From bladder problems to fatigue, pregnancy can make MS symptoms worse, yet many meds are not safe for pregnant women. “We advise people on non-pharmaceutical approaches: getting enough sleep, adjusting work schedules and exercising,” says Dr. Green. “Symptoms during pregnancy are probably not MS—tiredness doesn’t mean your symptoms are coming back,” says Eileen Davis, APN, who has worked with people with MS for 12 years in New Jersey and New York. Keep exercising, she recommends, “so you aren’t carrying unnecessary weight postpregnancy, which can affect symptoms such as falling.”
LIVING WITh MS
connect the team Connect your obstetrician and neurologist to coordinate your care. Visit www. nationalMSsociety.org/pregnancy for “Pregnancy, Delivery and the Post-Partum Period” to share with health-care professionals. If anesthesia is part of your birth plan, arrange a meeting with the anesthesia team. All forms of anesthesia are considered safe for women with MS. Don’t wait to plan for what happens after delivery. Tap family and friends about helping with housework, food and, of course, watching the baby!
Resources on MS and pregnancy Check out the Society’s collection of videos, books, booklets and Web pages that you can download, or call us for free print copies. www.nationalMSsociety.org/ pregnancy “MS and Starting a Family”—Momentum, Winter 2010-2011 www.nationalMSsociety.org/ Momentum (click “Back Issues”). Kara’s Story – Part I www.youtube.com/watch?v=F1heWhc7jI The National MS Society follows Kara from her first trimester… Kara’s Story – Part II www.youtube.com/watch?v=npgN99 NeD1k&feature=channel …all the way through to the birth of her baby boy.
Knowledge is power is a six-week, free, at-home 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.
The MS Daily Minute www.nationalMSsociety.org/ dailyminute Sixty-second videos packed with information on • Beginning MS Therapy after Pregnancy • Relapses During Pregnancy • Breastfeeding with MS
JOIN ThE MOVEMENT®
• Support During and After the Pregnancy
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SERVICE PROVIDER SPOTLIGHT
SERVICE PROVIDER SPOTLIGHT: DR. SUDHIR ATHNI, MD BY JAMIE HUGHES If you’d asked Dr. Sudhir Athni, “What do you want to be when you grow up?” when he was a child, you would have received a collection of answers as long as a child’s Christmas list. This neurologist, who has been in Macon for nearly seventeen years, has always had an interest in everything from photography and computer programming to law and, of course, medicine. Thankfully, he chose the lattermost passion as his life’s work, becoming the first doctor in his family. Now a husband and father of one, Dr. Athni has added “travelling” to his ever-growing list of hobbies. It is his goal, he states, to take his family on at least one trip a year. They have visited places as far flung as Peru, Venezuela, India, and France and have plans to travel to Greece, China, Egypt, and Russia over the next few years. His own travels began on a slightly smaller scale when he moved halfway across the country in pursuit of his education. After spending his childhood in New York state, Dr. Athni attended Rice University in Houston, Texas where he earned a Bachelor of Science in Civil and Environmental Engineering, graduating Magna Cum Laude. He then moved to Baylor College of Medicine, also in Houston, to pursue a degree in medicine. After completing his Internal Medicine Internship and Neurology Residence at Baylor, Dr. Athni decided to stay on there as a teacher of future doctors before moving to Fort Worth to join Kaiser Permanente. Eventually, this modern-day Renaissance man found his way to Macon, Georgia where he opened his private practice, Neurology of Central Georgia in 1995. He also currently offers his expertise at Macon Northside Hospital, where he has consulting privileges, and at Mercer University in Macon as an adjunct clinical instructor in the Department of Family Medicine. After seeing a rise in the number of MS patients in his area, Dr. Athni opened the Regional MS Center several years ago, combining it with his existing practice. His center now currently serves approximately three hundred MS patients in addition to others with neurological conditions such as headaches, neck and back pain, seizures, strokes, Carpal Tunnel, Peripheral Neuropathy, and Parkinson’s Disease. A firm believer in providing individualized treatment, Dr. Athni sees each patient when he or she visits rather than requiring anyone to rely on a PA or nurse practitioner alone. 12
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Neruology of Central Georgia, LLC & Regional MS Center 174 Water Tower Court, Macon, GA 31210
SERVICE PROVIDER SPOTLIGHT
In addition to personalized and hands-on care, Dr. Athni’s practice provides what he calls “high tech medicine” such as Deep Brain Stimulation (DBS) for Parkinson’s Disease and tremors as well as Vagal Nerve Stimulation (VNS) for seizures. However, when it comes to multiple sclerosis, which is more unpredictable and varies as greatly as the people who have it, the best strategy, according to Dr. Athni, “is to treat early and aggressively.” This is why he believes MS patients should undergo repeat diagnostic tests like MRIs on a regular basis to keep tabs on the progress of the disease. This vigilance is what helps patients and doctors to select the best medicine for treatment, beginning with drugs like Avonex, Betaseron, Copaxone, and Rebif before moving on to “stronger” treatments such as Gilenya and Tysabri when warranted. However, when it comes to symptom treatment, Dr. Athni takes a much more conservative approach than some neurologists, treating only what patients describe as being “intolerable” with medication. This, he firmly believes, helps patient to avoid drug interaction issues that cause as many, if not more, problems than multiple sclerosis itself. “What surprised me most about my patients,” Dr. Athni states, “was the fact that many who were newly diagnosed refused to take the medications I could offer them, insisting instead that they weren’t ill or had something other than multiple sclerosis. I understood their reticence. However, while it is true that MS is not a pleasant diagnosis to hear, so many wonderful and effective treatment options are now available that no one’s situation is hopeless. So many advances have been made in the last ten to fifteen years that it is simply staggering, and it’s only going to get better from here.” This fact is what has motivated Dr. Athni to continue working with the MS community in middle Georgia. In addition to providing for the medical needs of a growing patient base, he plans to expand his center’s level of participation in research trials in 2012 in order to discover new treatments and management options for the disease. Additionally, he is currently working on a book about multiple sclerosis that will be aimed at educating new patients and caregivers to help them understand what the disease actually is and what it means to have it. Likewise, he is currently working with the MS Society to plan the first ever Middle Georgia MS Expo in June 2012 in order to raise awareness about the disease and provide a way for patents and healthcare providers to meet, which Dr. Athni hopes will be a yearly event. Whether it is fundraising for the local MS Society or laying the groundwork for a notfor-profit foundation to help patients in his area, Dr. Athni is tirelessly working to bring an end to a disease that affects somewhere between 250,000 and 350,000 people in the United States. His passion and enthusiasm show that great doctors provide more than diagnoses and prescriptions for their patients.
For More Information on Dr. Athni and Neurology of Central Georgia, LLC Contact Info: 175 Water Tower Court Macon, GA 31210 Phone: (478) 471-6217 www.athni.com
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PROGRAMS
The Georgia Chapter is pleased to partner with Chapters from around the country to offer clients living with MS the 2012 Employment Teleconference Series. Starting January 12, 2012 at 7pm and takes place every other Thursday at 7pm January through March. JANUARY 12 - A 21st Century Approach to Job Searching Webinar: Network your way to find that next job. Learn about the role online job boards and social networking websites can play in your job search. This program will include an optional online component for those who have Internet access. JANUARY 26 - Get Informed: Legal Protections in the Workplace: Learn about key employment laws, such as the ADA and FMLA, and how you can use them to make an informed decision about employment. FEBRUARY 9 - Managing Challenging Resumes: Do you need to restructure your resume due to gaps, layoffs, or a career change? Are you over 50 and need a resume makeover? HR professionals will address these and other resume challenges. FEBRUARY 23 - Reinvent Yourself: Hear from others living with MS who changed careers after their diagnosis, along with a vocational specialist, on how to navigate this transitional period. MARCH 8 - Home-Based Employment: What Employers Want: Learn from employers about what they look for when hiring people to work from home. MARCH 22 - Don’t Do It Alone: Employment Resources: Learn about agencies and resources available to help you gain and maintain employment.
To register for this series call 1-800-344-4867 or visit www.nationalMSsociety.org/gaa
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PROGRAMS
2012 Teleconference Schedule- Mark Your Calendars All Teleconferences take place from 7:30 –8:30pm EST January 10, 2012
Learning to be a Great Self-Advocate Participants will learn effective practices and communication styles, how to make informed decisions and to understand individual strengths and needs, identify goals and recognize legal rights and responsibilities.
February 14, 2012
Genetics, Genomic Medicine and MS MS Genomic research will help identify the genes that contribute to the onset of MS as well as identify the environmental risk factors involved in the disease process. This information will aid to the growing field of genomic medicine and will help generate early diagnostic and prevention criteria, better treatment and a cure.
March 13, 2012
Mindfulness Meditation Learn how mindfulness meditation has been used to reduce stress and promote relaxation.
April 10, 2012
Women’s Issues and MS Join us as a neurologist and MS specialist discusses the various issues affecting women with MS and how to manage these symptoms.
May 8, 2012
Holistic Medicine and MS Learn how holistic medicine can be used in addition to disease-modifying drugs to better treat MS symptoms.
June 12, 2012
Health Insurance Reform: Implications for People with MS Hear an update on the implementation of the Affordable Care Act from Society Staff actively monitoring the key provisions of importance within the MS community.
July 10, 2012
Multitasking: Living with MS While Parenting Young Children Parenting wasn’t easy before MS. Learn tools on how to balance parenting while managing your MS.
August 14, 2012
Vitamin D and MS Learn the importance of Vitamin D and why it is crucial to have your Vitamin D level checked.
September 11, 2012
Remyelination and MS This teleconference will look at the exciting research being done at the University of Central Florida on remyelination.
The topics you want. The convenience you need. Learn about MS NOW. Register Today by calling 1-800-344-4867 or visiting www.nationalMSsociety.org/gaa TOLL FREE NUMBER 1 800 344 4867
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NEWS
MEDIcARE DEADLINES
FLu ShOT, OR NOT?
RE-
Medicare recipients still have the opportunity to review, renew or replace drug plans during the annual open enrollment period, which began October 15 and runs until December 7 this year. The 2006 drug law imposes a penalty on those who need prescription drug coverage (and who do not have creditable coverage), but do not sign up in time. That penalty grows larger every year.
means no donut hole for prescription drugs as well as lower coinsurance and copayment costs. People with low incomes also qualify. Apply directly through the Social Security Administration at www.socialsecurity.gov/ i1020.
In 2012, the “donut hole,” or gap in prescription drug coverage, still exists, but the Affordable Care Act requires insurers to give Medicare Part D participants a 50% discount on most brand-name drugs, including the MS disease-modifiers, while they are in the coverage gap. Drugs prescribed “off label” for MS symptoms are still excluded from coverage and exempt from the discount. Visit www.medicare.gov for general information, publications and to compare the drug plans available in your area. Call an MS Navigator® at 1-800-344-4867 for free healthinsurance counseling. People with a Medicare private health plan, also known as a Medicare Advantage plan, (but not including a Medicare Medical Savings Account plan), can switch to Original Medicare during the Medicare Advantage Disenrollment Period from January 1, 2012, to February 14, 2012. The “Extra help” program People who receive SSI (Supplemental Security Income) benefits, or who get help from the state Medicaid program to pay Part B premiums (Medicare Savings Plan), automatically qualify for “Extra Help,” which 6 | JOIN THE MOVEMENT: nationalMSsociety.org 16 | JOIN THE MOVEMENT: nationalMSsociety.org
Flu season brings not just coughs and sniffles, but the question: Get a flu shot, or not? Because there is a much higher risk of an MS relapse due to flu than to the flu vaccine, the Society generally recommends that people with MS get the shot. “Don’t wait for flu season to catch up with you. Discuss getting the flu shot with your doctor to protect yourself this year,” says Rosalind Kalb, PhD, vice president of the Society’s Professional Resource Center. The injectable flu vaccine—which is an “inactivated” vaccine—has been studied extensively in people with MS and is considered quite safe. It may be taken by
NEWS
people on an interferon medication, glatiramer acetate, or mitoxantrone. It is not yet clear if the vaccine is as effective for those talking natalizumab or fingolimod. It’s best to delay vaccination for four to six weeks after the onset of any serious exacerbations. People with MS should avoid FluMist, a live-virus flu vaccine (sometimes called LAIV for “live attenuated influenza vaccine”) delivered via nasal spray. For more information, go to www.nationalMSsociety. org/vaccinations.
TAx DEDucTIONS bEYOND MEDIcINE Many of the expenses associated with managing MS might be tax deductible, beyond medicines. (Keep in mind that only unreimbursed medical expenses that exceed 7.5% of your adjusted gross income are deductible.) Here are additional possibilities: • Equipment and extras, such as service dogs (and dog food!) and transportation to doctor appointments via car service or taxi if you can no longer drive. • home modifications that don’t increase a home’s value. “Get a doctor’s prescription for ramps, wider doorways, grab bars, even a swimming pool, as well as a letter from a real estate agent stating that these changes don’t make your home more valuable,” suggests Anne Davis, program director of Legal Services for the Society’s New York City and Southern New York Chapter. For people receiving SSI or disability benefits, impairment-related work expenses may be
deducted from their earnings, if their income might otherwise jeopardize their government benefits. Two IRS Publications—907, Tax Highlights for Persons with Disabilities (www.irs.gov/ pub/irs-pdf/p907.pdf) and 502, Medical and Dental Expenses (www.irs.gov/pub/ irs-pdf/p502.pdf)—may be helpful. Consult an accountant to make sure your particular situation is in line with current IRS regulations.
Scholarship Opportunity High school seniors who have been diagnosed with MS or who have a parent with MS are eligible for the Society’s scholarship program. Awards range from $1,000$3,000; a small number of fouryear awards are offered. Applications for 2012 scholarships will be accepted (online only) between October 1, 2011, and January 13, 2012. For more info, visit www.nationalMSsociety.org/ scholarship or call us at 1-800-344-4867.
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RESEARch
52 MS GENES IDENTIFIED
Society is funding a second large study to confirm and expand these results.
NEW MS ThERAPY MOVES FORWARD
In the largest MS genetics study ever, researchers have documented 29 new genetic variants associated with MS, and confirmed 23 others previously implicated in the disease. Most of the genes were related to immune function, and more than a third have already been linked to autoimmune diseases. A large number were related to T-cell function; T cells, a type of white blood cell, play a major role in the immune system’s attack against the nervous system in MS. Also, two genes linked to vitamin D were found: research increasingly suggests that low vitamin D levels are a risk factor for developing MS. (The Society is funding a new clinical trial of vitamin D supplementation.) The study, a collaboration between the International MS Genetics Consortium and the Wellcome Trust Case Control Consortium 2, was published in the August 11, 2011, issue of Nature, and involved nearly 10,000 people with MS and more than 17,000 who do not have the disease. While the results of genetics studies haven’t so far resulted in the ability to do individual genetic counseling, these and further findings should help uncover what causes MS and improve treatments. The 8 | JOIN THE MOVEMENT: nationalMSsociety.org 18 | JOIN THE MOVEMENT: nationalMSsociety.org
The first phase III study of alemtuzumab (proposed brand name Lemtrada) for relapsing-remitting MS found that the drug met one of two primary endpoints. Researchers found that people treated with the drug had 55% fewer relapses over two years compared to those taking the interferon Rebif. However, results of the trial’s other goal, to delay disability, were not statistically better than Rebif. The study, called CARE-MS I, involved 581 people with relapsing-remitting MS. Another trial, called CARE-MS II, is still underway. Alemtuzumab is a monoclonal antibody that attacks the cells in the immune system that contribute to myelin damage. It is presently approved by the FDA to treat B-cell chronic lymphocytic leukemia. Sanofi and Genzyme, the drug’s sponsor, plan to seek approval of this intravenous drug for MS in the U.S. in early 2012. In June 2010, the FDA designated alemtuzumab a “Fast Track Product,” which should expedite its future review after results of the phase III trials are submitted.
bONE hEALTh MAY bEGIN EARLY People with MS have long been known to be at risk for bone loss, but a study published in the July 12, 2011, issue of Neurology suggests that it can occur very early, even before MS has been diagnosed. According to the study, low bone mass is more widespread among people newly diagnosed
RESEARch
with MS, or those with clinically isolated syndrome (or CIS, a single episode of MS-like symptoms), than among people without MS. Study researchers measured bone density in 99 people newly diagnosed with MS or CIS, compared to 159 people without MS. More than half of the people with MS or CIS had low bone mass, compared to 37% of controls. Previously, scientists had speculated that people with MS are at greater risk of low bone density and broken bones due to factors such as lack of exercise stemming from mobility issues, medications or low levels of vitamin D (which plays a significant role in building bone). The researchers suggested that even early in MS, people should pay attention to good bone health by getting adequate vitamin D and calcium, as well as by performing weight-bearing activities. For more ideas on promoting bone health, go to www. nationalMSsociety.org and search for “You Can Build Healthier Bones.”
MS RESEARch TAKES cENTER STAGE
In October, About.com blogger Dr. Julie Stachowiak and producer/director Kate Milliken—both of whom live with MS— reported live from the world’s largest MS conference at the Society’s blog. At the fifth joint meeting of ECTRIMS and ACTRIMS (the European and Americas Committees for Treatment and Research in MS), over 5,000 of the world’s leading scientists and clinicians gathered October 1922 in Amsterdam. Results from four phase III studies on MS therapies were presented, along with the latest research on MS risk factors, treatments and diagnosis. Join the conversation at blog.national MSsociety.org, and connect with people with MS, the people who care about them and MS experts.
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MS AWARENESS WEEK
Georgian’s Make Your Mark Against MS! March 12-18, 2012
GO ORANGE! The goal of MS Awareness Week is to acknowledge people who are a part of the movement, invite new people to join the movement, and encourage everyone to get involved during MS Awareness Week by taking at least one action to demonstrate their commitment to a world free of MS.
What will you do? Get Inspired by some of these successful examples: • Wear Walk MS or Bike MS t-shirts, jerseys, buttons, pins and bandannas • Buy Society shirts (www.MSsocietyipp.org) • Just wear orange! Use Social Media and Email... • Send videos about MS. Browse the Society’s YouTube channel and send a new video to friends each day. The Society has many that are appropriate for raising awareness. Choose videos that are short and to the point. • Use Facebook to share facts about MS and invite people to participate in the MS Walk or Bike MS events. • Add an MS Awareness Week e-mail signature to your e-mails. • Send e-mail blasts to co-workers, friends, and family: let them know that you are their connection to MS, give some facts about MS, and ask them to pass it on. • Encourage everyone to change their profile picture to the Society’s logo during that week; ask friends and family to do the same. Get out in Your Community… • Ask your church, club, or organization to post literature and decorate in orange. • Call someone with multiple sclerosis to show that you care. • Write notes on MS stationary or note cards to doctors, legislators, businesses, clubs who have supported MS-related efforts. Don’t ask for anything, tell them you appreciate their support. • Hand write or sign your name if you can do so. 20
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JOIN THE MOVEMENT: nationalMSsociety.org
MS AWARENESS WEEK
• Use snail mail, not e-mail. You would be surprised how much a mailed note means to people. • Send or take to the CEO of a company or business owner information they can give to employees about MS. • Connect with restaurants, coffee shops and other retail businesses… • If the business serves food or drinks, ask them to use NMSS orange napkins during the week. Ask if they will serve a drink or food item that is orange. • Get permission to put flyers in local business windows to inform people about MS Awareness Week and events you have planned. Print on bright orange paper! • Visit an assisted living, hospital or nursing home where there are people with MS. Give the MS patients and staff MS related gifts, i.e. oranges, napkins, MS logo items and informational literature. Contact your legislators and local officials... • Visit your state legislators. During the legislative session, your representatives are often in their district offices in your community on Fridays. Call ahead and make an appointment! • Send letters to your community and state officials. • Arrange for your city council to present a proclamation declaring the week, MS Awareness Week (call your council person or the Mayor or City Secretary to arrange this) • Take several people with MS with you to receive the proclamation. Share your story... • Arrange for a group of people with MS to go out in public with their stories. • Make an appointment for a social visit with your doctor. Limit your visit to less than ten minutes. Take MS-related gift, literature and a personal thank you note. Don’t discuss medical problems at this time. • Visit schools and universities. • Arrange for a support group to invite friends, relatives, and others to a meeting. Hold the meeting during MS Awareness Week. Talk about MS, tell your story, give information about the disease and donating time or money. • You can tell a story about how MS affects you and one about how people can get involved. Let them know how helping, volunteering and donating to the cause can make a difference in people’s lives. Use the media... • Contact local media for interviews – newspaper, radio, TV. See if they will cover one of your events or write a story about you. • A letter to the editor is an easy way to share your story with the public and call for action. • Work with a local paper to use orange newsprint (similar to pink newsprint for Breast Cancer Awareness)
GO ORANGE!
TOLL FREE NUMBER 1 800 344 4867
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WALK MS
Walk MS: 2012 Margy, diagnosed in 2006
dollar by dollar, Walk MS is Changing lives.
Every step. Every person. Every second spent and dollar raised. They all add up to an experience unlike any other: Walk MS. This is our time to unite and stand strong. Together we will change lives. REGISTER & Start fundraising today!
For more information on Walk MS, or for fundraising and team recruitment ideas, please contact Laurie Palmer, Walk MS Development Manager at 678672-1000 or laurie.palmer@ nmss.org.
www.walkMSgeorgia.org
Nine Walks‌One Destination‌A World Free of MS 03.24.12
03.31.12
04.14.12
Albany Riverfront Park Columbus Golden Park Augusta Lake Olmstead Rome Berry College
Macon GEICO Corporate Campus Savannah Daffin Park Athens Oconee Veterans Park
Atlanta Piedmont Park
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JOIN THE MOVEMENT: nationalMSsociety.org
04.21.12 Marietta Marietta Square
BIKE MS
Don’t just ride, Bike MS. BIKE MS PROMO
Bike MS: deloite. atlanta to athens Ride /// may 5 - 6, 2012 /// 2 days Register today /// bikeMSgeorgia.org
Bike MS: COX ATLANTA RIDE /// SEPTEMBER 15-16, 2012 /// 2 days REGISTRATION OPENS fEBRUARY 1, 2012
TOLL FREE NUMBER 1 800 344 4867
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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. Use your talents and interests to raise awareness and funds for the National Multiple Sclerosis Society! There are endless ways to get involved. Host a fundraising event, start a grassroots fundraising campaign with email or take on a personal challenge of your choice! Fundraisers all over are planning fundraising activities. No matter what you choose to do, the National MS Society staff is available to help and support you.
Visit www.nationalMSsociety.org/DIY to get started!
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JOIN THE MOVEMENT: nationalMSsociety.org
SELF hELP GROuPS GEORGIA African Americans with MS Self-help Group Contact: Jo Ann (404) 932-2662 berean Seventh Day Adventist Church 291 H.E. Holmes Drive, Atlanta GA Meets the 2nd Saturday of every month from 3:00pm -5:00 pm
West cobb Self-help Group Contact: Donnie (770) 943-4194 Powder Springs Library 4181 Atlanta Street Powder Springs, GA Meets the 3rd Tuesday of every month from 6:00 - 8:00 pm
Atlanta Women’s Self-help Group Contact: Kristin (404) 351-0205 ext. 110 MS Center of Atlanta 3200 Downwood Circle, Suite 550 Atlanta, GA Meets the 4th Tuesday of every month from 7:00pm-8:30pm
Woodstock MS Self-help Group* Contact: Zaida (770) 485-4226 St. Michael the Archangel Church 490 Arnold Mill Rd Woodstock, GA 30188 Meets 3rd Saturday of every month from 11:00am-1:00pm
Decatur Self-help Group Contact: O.J. (770) 256-2516 Green forest Community baptist Church 23250 Rainbow Road, Decatur, GA Meets the 2nd Saturday of every month from 10:00 am - 12:00 pm Snellville Self-help Group Contact: Vicki (770) 978-1517 Emory Eastside Medical Center 1700 Medical Way SW Snellville, GA Meets the 4th Saturday of every month from 10:00 am - 12:00 pm Lawrenceville Women’s Self-help Group Contact: Karen (678) 975-7167 Lawrenceville Library Highway 29 Lawrenceville, GA Meets the 2nd Saturday of every month from 1:30 pm - 2:30 pm
*This group has chosen to include a faith oriented focus. They offer a moment of silence, reflection and/or prayer at the start and/or close of their meetings. If this group is not for you, please call the Georgia Chapter for another recommendation of Self-Help Group within your area. Douglasville Self-help Group Contact: Stephanie (770) 577-0408 first Presbyterian Church Parlor Room Douglasville, GA Meets the 3rd Thursday of every month from 7:00pm - 8:30 pm Newton county Self-help Group Contact: Jean (678) 346-0740 Newton General Hospital Auditorium Covington, GA Meets the 2nd Tuesday of every month from September - May from 7:00 - 8:30 pm
TOLL FREE NUMBER 1 800 344 4867
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SELF hELP GROuPS GEORGIA S.h.E.P.S Contact: Kate (404) 402-0368 MS Institute at Shepherd 2020 Peachtree Road, Atlanta GA Meets the 2nd Saturday of every month from 10:00 am - 12:00 pm
Albany African American Self-help Group Contact: Colette (229) 395-4150 Chosen to Conquer, Inc. 1120 W. broad Avenue., Suite C-1 Meets the 2nd Saturday of every month from 12:00 - 2:00 pm
cumming Self-help Group Contact: Laura (770) 781-5816 Northside forsyth Hospital 1400 Doctor bldg Cumming, GA Meets the 1st Saturday of every month from 10:00 - 11:30 am
Athens MS Family Contact: becky (706) 353-0606 Athens Neurological Associates 1086-A baxter Street Athens, GA Meets the 3rd Thursday of every other month from 6:00 - 7:00 pm in the months of (Jan, Mar, May, July, Sept, Nov)
Wellspouse Self-help Group Contact: Jan (404) 579-6782 LaMadeleine-Perimeter 1165 Perimeter Center West Atlanta, GA Meets 2nd Thursday of every month from 7:00pm-8:30pm *This group is for spouses/caregivers whose partner has MS carroll MS Self-help Group Contact: Libby (770) 836-3287/ (678)793-1357 Tanner Medical Center, Classroom #3 705 Dixie Street Carrollton, GA Meets 2nd Sunday of every month from 2:00pm-3:00pm Albany Self-help Group Contact: Janet (229) 435-2517 Phoebe Putney NW Conference Center 2336 Dawson Road Albany, GA Meets the 1st Monday of every month from 7:00 - 8:30 pm 26
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JOIN THE MOVEMENT: nationalMSsociety.org
Augusta MS Self-help Group Contact: (706) 721-8664 Medical College of GA - MS Center 1120 15th Street Augusta, GA Meets the 4th Monday of every month from 6:00 - 7:30 pm bartow county Self-help Group Contact: Towanda (770) 687-1663 Keller Williams Office 1010 Tennessee Street Cartersville, GA Meets 4th Thursday of every month from 6:30 - 8:30 pm chattahoochee Valley Self-help Group Contact: Terry (334) 298-8320 Columbus Public Library Downstairs Media Area 3000 Macon Road Columbus, GA Call to confirm meeting location Meets the 2nd Tuesday of every other month from 6:30 - 8:00 pm in the months of (Jan, Mar, May, July, Sept, Nov)
SELF hELP GROuPS GEORGIA hope Floats Self-help Group Contact: Marty (478) 742-9011 Pinegate 300 Charter blvd, Macon GA Meets the last Monday of every month from 6:00 - 8:00 pm
T.A.M.S. Self-help Group Contact: Sherry (706)472-3273/ (706)975-9762 American Pie Pizzeria of Thomaston 710 N. Church Street Thomaston, GA Meets the 3rd Thursday of every month from 12:30pm – 2:00pm
Looking Good Self-help Group Contact: Paula (912) 538-0142 Tree House 723 North Saint East, Vidalia, GA Meets 2nd Tuesday of every month from 7:00pm-9:00pm
Valdosta MS Self help Group Contact: barbara (229) 247-7792 Smith Northview Hospital Meets the 3rd Saturday of every month at 10:30am
Middle GA Self-help Group Contact: Michelle (478) 335-4675 Houston Health Pavillion 233 North Houston Road Warner Robins, GA Meets the 2nd Tuesday of every month from 6:30 - 8:30 pm
Thomasville MS Self-help Group Contact: Mike (229) 346-9746 Thomas County Public Library 201 North Madison Street Thomasville, GA Meets the 3rd Thursday of every month from 6:00 - 7:30 pm
Mitchell county MS Self-help Group Contact: Lucas (229) 224-5979 Mitchell County Hospital Community Room 90E. Stephens Street Camilla, GA Meets the 2nd Tuesday of every month from 6:00pm – 7:00pm
***The National MS Society is a secular organization, welcoming those of every faith, and those that espouse none.*** Please contact the Self-Help Group leaders prior to attending a group meeting to assure that the meeting time, date, and location are accurate. Groups occasionally change their meeting schedules to participate in other National MS Society events.
TOLL FREE NUMBER 1 800 344 4867
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NON-PROFIT ORGANIZATION U.S. POSTAGE PAID City, ST Permit # (No.)
Georgia Chapter 1117 Perimeter Center West, Suite E101 Atlanta, GA 30338
VOLUNTEER SPOTLIGHT
Sam roper and Texas roadhouse raise over $15,000 in THE 2nd annual "drive for Ms" The 2nd annual Drive for MS golf tournament and silent auction was held on October 10, 2011 at Gwinnett Country Club. Sam started the tournament in honor of his father, Mike Roper, and his younger sister, Angela Roper Seale. Congratulations to Sam and his dedicated team at Texas Roadhouse for joining the movement and making a difference in the lives of people living with MS. To find out more about the Drive for MS, contact Sam at roper.driveforMS@gmail.com.