Fall 2013 MSConnection magazine, South Central edition
MSConnection is a free quarterly magazine of the National Multiple Sclerosis Society. It provides personal stories, program updates and research news for persons impacted by MS in the South Central states of Arkansas, Louisiana, Oklahoma, New Mexico and Texas.
Moving Toward A World Free of MS FALL 2013 Making Connections to Stop MS In this issue: Tyranny of the To-Do List A Song of Faith for Brianna PochĂŠ Top Scholar Megan Butterman South Central Update & Milestones Fall 2013 Volume 7 • Issue 4 The official magazine of the National Multiple Sclerosis Society: South Central Arkansas • Louisiana • New Mexico Oklahoma • Texas GetConnected Fort Worth Office Closes Aug. 31; Wellness Classes to Continue at New Location The National MS Society’s Fort Worth office will officially close Aug. 31. Until then, the Fort Worth wellness program will continue on Tuesdays and Thursdays until they relocate to wellness director Travis Ehrhardt’s new location in September. Despite this change, our commitment to the mission will not be impacted as we will continue to provide programs and services to address the challenges of everyone living with multiple sclerosis through our North Texas office in Carrollton. The wellness program led by Travis and his Mind Set team will continue to serve Tarrant County individuals with MS. Through much discussion with staff, Leadership Council members, South Central Board of Trustees and Fort Worth wellness participants, we are confident that wellness programs will continue with only a minor interruption during the move; event participants and volunteers will continue to have the same amount of touch points with Society staff and the number of events available to them; and other Tarrant County wellness programs and support groups will remain available. The Society also remains a responsible steward of its donor dollars; this decision allows us to redirect those funds in other effective ways that will help move our mission forward. If you have questions, please contact the National MS Society at 1-800-344-4867 (press 2). A Vintage Affair for MS Nov. 15, 2013 Hyatt Regency Hotel New Orleans, La. The annual Renaissance Party has undergone a renaissance of its own with a new name and Vintage flair. For more information or to sponsor this event, contact Jennifer Simon in the Society’s Metairie, La. office at 504-322-3788 or by email at firstname.lastname@example.org. 1-800-344-4867 Board of Trustees Chairman ERNEST JOHNSON Houston, TEXAS Treasurer DON McCormack MIDLAND, TEXAS Secretary DAVID CARDER TULSA, OKLAHOMA Regional Executive Vice President Mark Neagli MSConnection Editor James Black © 2013 National Multiple Sclerosis Society: South Central MS STOPS PEOPLE FROM MOVING WE EXIST TO MAKE SURE IT DOESN’T. JOIN THE MOVEMENT 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. We mobilize people and resources to drive research for a cure and to address the challenges of everyone affected by MS. LIVING WITH MS The Tyranny of the To-Do List by Jennifer LaRue Huget The house needs vacuuming. Laundry needs folding. The two dogs need to be brushed. The garden – such as it is – needs weeding. The attic needs clearing out and organizing. As does the hall closet. There’s so much to be done around here, I don’t know where to begin. I’m lucky to be married to a hard-working, helpful husband who does more than his share of the work around here. But the weather has been uncooperative of late, and our schedules have been so busy, that the chores and tasks keep piling up. When that happens, I tend to feel overwhelmed. And when I’m overwhelmed, I can’t think straight. Sound familiar? With or without multiple sclerosis, life’s to-do lists can be daunting. For many with MS, physical limitations add to the frustration: it’s hard enough to keep up with everything that needs doing when your body cooperates, and even harder when your body balks at doing the work. I think it’s important not to give up. We need to keep active, do what we can, keep chipping away at the to-do list, remain optimistic that some day we will be all caught up. But it’s also important to be realistic. I’m not going to vacuum, fold the laundry, groom the dogs, weed the garden, and clean the attic and the closets this weekend. It’s just not happening. So I need to prioritize and pick a handful of projects that are do-able over the next few days. The others? Well, they’ll just have to wait. Most important of all is maintaining perspective. In the grand scheme of things, how much does weeding the garden this weekend matter? What will happen if I never get around to it? And is vacuuming the house more important than, say, hanging out with my kids or taking a nice bike ride? Is cleaning the attic more important than sitting down for a glass of wine with my husband? I think not. I’m not relinquishing my responsibilities around here. But I am acknowledging that if I don’t get around to everything on my to-do list this weekend, it won’t be the end of the world. Because if there’s one thing I’ve learned from having MS, it’s that life is too short to be uptight about the small stuff. Jennifer LaRue Huget was diagnosed with MS in 2001. A freelance writer and children’s book author, she lives in Connecticut with her husband, two teenage kids and two brown dogs. Her website is jenniferlaruehuget.com. Silent & Live Auctions • Wine Pull Music by Bucktown All-Stars Hyatt Regency • 601 Loyola Avenue • New Orleans, LA 70113 FRIDAY, NOVEMBER 15, 2013 • 7-11 PM Moving Toward A World Free of MS 3 LIVING WITH MS A Song of Faith by Brianna Poché Editor’s note: Brianna Poché, 18, is a 2013 National MS Society scholarship recipient from Baton Rouge, La. Brianna will attend Louisiana State University this fall to earn her bachelor’s degree in English. Diagnosed with MS, Brianne shares her story of someone special who inspired her to never give up in the face of life’s challenges. When I look up to the sky, I think of my childhood. I must admit, I got lucky with mine. I came into this world to an affectionate, downto-earth family. However, when I think of individual members of my family tree, there is one character that stands out to me. Her name is Bernardine Chauvin Poché, and she holds a special place in my heart, even though she has been gone for many years now. I called her Memaw – I don’t remember why, except that perhaps it was easier for me to say. She was a plump woman (she chalked it up to her good Southern cooking). She had green-gold eyes and a straight nose; I inherited both from her. My memaw spoiled me and my brother rotten. She let us watch the Herbie movies – yes, the ones about the car – and eat the sweets we couldn’t have at home. She called us “sha” and made us move off her spot on the couch. She ate watermelon and wore curlers in her hair. Memaw was the one who taught us how to make the best sweet tea (two rounded cups of sugar) and how to properly peel crawfish. She kept the beautiful rosary I keep in my room now and prayed when times got tough. She brought me to the mall and laughed at the long-haired boys I thought were cute; she giggled when I taught her some slang alternatives to attractive like “hot.” Then she told me that she thought my pawpaw was hot. She’s a big part of the pastel, water-colored portrait that was my childhood – however, one incident with Memaw still stands out to me most in the sea of memories. Memaw drove a white Lincoln when she was alive. It had a particular smell, something like leather and old lady perfume, but it wasn’t unpleasant. It was a familiar comfort that always reminded us that we were going to Baskin Robbin’s or Mr. Gatti’s Pizza. My cousins and I were riding with her one time when Tim McGraw came on the radio. That was the first time I ever heard the song “Last Dollar,” and I instantly fell in love with its uplifting sound. Memaw taught us the words to it so that we could sing along to it with her. I don’t remember where we were going, but I do remember our persistence in learning the words to that song before we arrived at our destination. By the time she parked, we were a child country chorus. She smiled so big. I could tell she was proud of us – not just for learning the song for her but in our determination to push on. Pulling me aside a little later, Memaw told me, “You’re just like me. Hardheaded, wouldn’t give up for nothin’. Your daddy doesn’t always think it’s a good trait to have, but I promise you, in my life it’s done more good than bad. Stubbornness and faith are what have gotten me where I’ve gotten... just remember that. Don’t change your mind, keep your faith, and be a little optimistic.” Memaw died when I was twelve years old, and I honor her everyday by living by her words of advice: when I’m feeling a little blue or not wanting to continue a task, I think of her and push on. When 4 MSConnection • FALL 2013 LIVING WITH MS Dive Into Recovery Program Makes Big Splash R ecognizing the vast health benefits of swimming pools, Dive Into Recovery – launched by the Association of Pool and Spa Professionals, Greater Houston Chapter – developed a program to give back to the community with the donation of a customized backyard pool. The National MS Society partnered with Dive Into Recovery to promote the program to families impacted by multiple sclerosis. Volunteer firefighter Jeff Armbruster was chosen as a recipient for pool accessibility improvements, allowing him a way to escape brutal Texas heat that can exacerbate MS symptoms and to improve his quality of life. Jeff writes: When I was diagnosed with MS on Oct. 14, 2009, my world came crashing down on top of me and I felt an incredible loneliness. My greatest concern was that I wouldn’t be there for my wife and kids as long as I had expected to take care of them or enjoy their lives as they grew up. Now, three-and-a-half years after the first major attack and diagnosis, and on new drugs that are improving my physical well-being, I can see that I can be around as long as I want – and even longer if I take care of myself. Moving back to Houston and buying a house with a pool was a way for me to be able to enjoy time with my kids and escape from the heat and MS. But I can’t be the caretaker of everything like I used to be, and the pool and We were amazed and grateful that we were chosen as the recipients of the 2013 Dive Into Recovery Program..... this will make it easier for me to exercise... and spend time with my family throughout the year. the deck aren’t accessible enough for our needs. I was amazed that a great group like the Association of Pool and Spa Professionals would team up with another great group of people like the National MS Society to give us a pool makeover. We were amazed and grateful that we were chosen as the recipients of the 2013 Dive Into Recovery Program and will receive a pool makeover this fall. This will make it easier for me to exercise in it and spend time with my family throughout the year. I was a volunteer firefighter for seven years and have been a volunteer with the Society for about three years. I never expected to be a recipient of such a wonderful blessing as a pool makeover. Volunteering on the fire departments in Louisville, Ohio and Spring, Texas were ways to give back to my community, never expecting a reward for it. A handshake and thanks were more than enough compensation for helping others. Trying to impact the life of someone else was enough reason to be a volunteer. Volunteering with the National MS Society was a way to fight back against MS and help those who can’t help themselves. Volunteering is a way to show my kids that you can face a challenge, fight back however you can and maybe even win. my parents tell me I’m acting just like Bernie Poché, I grin. I think if she saw me today, she would be proud of the strong young woman I’ve become. I listen to “Last Dollar” by Tim McGraw and feel her warmth next to me, rooting me on, just as hardheaded as me. I’ve learned the words to some of life’s most difficult songs, determined to not let them hold me back. The diagnosis of multiple sclerosis, the most difficult song I’ve had to tackle, has been no different for me. I remember that it only takes a little faith and a little optimism. I feel whole and happy all of the time. I could look into the sky and fly away if I wanted to, because Memaw gave me the wings to do so. Moving Toward A World Free of MS 5 AWA RENE S S Strengthening the Bonds of Empathy by Laurie Clements Lambeth “I feel pain when I see young people in wheelchairs.” his statement appeared on an empathy test given to medical students, the Balanced Emotional Empathy Scale (BEES), presented at a Medicine and Writing conference I attended last year. The test-taker was to assign each statement with a number on a scale from +4 (highly agree) to -4 (highly disagree). This was presented as a reliable assessment of empathy. I wrote -4 next to the statement. I do not feel pain when I see young people in wheelchairs. Nor do I feel pain when I see one using a cane or a walker/rollator. I feel a sense of kinship, compassion, respect; I have been using a cane off and on since my mid-20s, and I know how helpful it can be. I know wheelchairs aren’t objects to which people are bound; they offer freedom when legs won’t carry people where they need to go. When I returned from the conference, I wrote “I feel pain when I see young people in wheelchairs” on the whiteboard of my Literature and Medicine classroom. I then wrote the following words: compassion, empathy, pity, sympathy – and asked my students to draw lines between them, connecting and categorizing, leading us to discuss underlying meanings. Feeling pain when seeing young people in wheelchairs, we agreed, relates more to sympathy and pity than it does to empathy and compassion. There is a gulf of difference between them. The BEES test included statements about crying at weddings, at sad endings, and feeling uplifted by happy movies: empathy as pity and emotional overload. And this, I have learned, has a lot to do with how empathy is defined by the medical field: it’s just too much to handle, too sad. A professional distance must be achieved. If empathy is defined as emotionalism, it’s easy to guard against and to take refuge in the science offered in medical school. Other empathy tests rely on other metrics. According to recent studies, during medical students’ third year – the year they begin seeing patients – their empathic response drops significantly. Too often, medical professionals T COMING TO A FALL WALK LOCATION NEAR YOU... HARKER HEIGHTS, TX | SEPTEMBER 21 MUSKOGEE, OK | OCTOBER 5 ARDMORE, OK | OCTOBER 5 STILLWATER, OK | OCTOBER 26 THE WOODLANDS, TX | OCTOBER 26 SUGAR LAND, TX | OCTOBER 26 WACO, TX | OCTOBER 26 AUSTIN, TX | OCTOBER 27 HOUSTON, TX | NOVEMBER 10 KEMAH, TX | NOVEMBER 16 6 MSConnection • FALL 2013 continue to struggle with compassion, which is why Medical Humanities programs such as the one I teach in are needed, to cultivate curiosity about the individual patient. Clinicians must maintain professional distance, it’s true; they can’t possibly absorb all the pain their patients bring to the exam room. But empathy is more than emotion; it’s understanding born out of human curiosity. Patients like me don’t want to be pitied so much as to be understood as individuals, to be respected, to be asked questions. The desire for respect and curiosity resounded at a panel discussion organized by Rebecca Garden last March at SUNY Upstate Medical College. I joined other poets, Disability Studies scholars and activists Stephen Kuusisto, Jim Ferris and William Peace in discussing how the perspectives offered by people with disabilities can educate medical professionals. What I came away with is how sharing individual disability experiences empowers patients, and listening to them can help clinicians strengthen the bonds of empathy. Each of us represented a different disability acquired at different points in life, but we all shared similar observations we have made in medical settings. Together we arrived at certain ideas, not just across our own individual experiences, but through basic foundations of Disability Studies. We discussed the notion of cure as medicine’s main objective. When faced with the incurable, what can be done? “We’re sorry, there is nothing more that we can do,” Kuusisto reported, has become a standard, clichéd medical response to disability, nearly equivalent to the “avoid hot tubs” advice my neurologist offered to me when I was diagnosed with MS in the 1980s. But there is more to healing than curing. What can we as patients do? Engage their curiosity. Tell stories to help heal and build clinicians’ empathy as they heal us. Ideally, we can develop partnerships with our clinicians, mutually approaching the levels of care with which we feel comfortable, gaining their respect as they gain ours. Although MS is not curable (yet), those of us with relapsing MS are treatable, while people with more progressive forms may still feel underserved, needing empathy. I imagine all of us crave some degree of empathy from our care teams, someone curious to know what it’s like, to try to understand, to believe our symptoms, to listen. A deeper expression of empathy might bring us closer to a true sense of healing. Laurie Clements Lambeth’s MS diagnosis at the age of seventeen brought her to poetry. Her first book “Veil and Burn” (University of Illinois Press) was selected for the 2006 National Poetry Series. Currently at work on her second poetry collection and a book of creative nonfiction about MS, she also teaches in the Medicine and Society program at the University of Houston, where she earned MFA and Ph.D. degrees in Creative Writing. To learn more about her work, please visit laurieclementslambeth.com. he National MS Society congratulates Dr. Bridget Bagert on her recent recognition as “Physician of the Year - Community Hospitals” by the Ochsner Health System during its 9th Annual Spirit of Leadership Awards ceremony. The Annual Spirit of Leadership Awards program acknowledges leaders, physicians and teams demonstrating outstanding leadership qualities and contributions to their profession, Ochsner or the community. Ochsner recognizes and thanks recipients for the value they create for their patients, employees, and each other. Congratulations to Dr. Bridget Bagert T Dr. Bagert leads the Ochsner Multiple Sclerosis Center in New Orleans. This recognition within her organization is a high honor. Ochsner is southeast Louisiana’s largest non-profit, academic, multi-specialty, healthcare delivery system with eight hospitals and 38 health centers. Bridget, the Louisiana Leadership Council, the Louisiana office staff and the National MS Society are proud of you and know that this achievement is welldeserved. Congratulations on your great work and this important recognition. Moving Toward A World Free of MS 7 GET INVOLVED Society Scholarships Allow Students a Chance to Make A Difference by Stacy Smith and Kelly Tullberg with contributions from volunteers Jeff Harrison and Lori Boyd he words that express Megan Butterman’s childhood her parents. But in 2011, Megan’s family took one blow are not words that would typically be used to after another. describe most girls or boys. But early in Megan’s life, “When my husband left me after 29 years of family and friends began looking toward this young girl marriage, I was devastated,” Megan’s mom, Kelly, said. from Rio Rancho, New Mexico for bravery, power and “Only two months prior to this, my brother Steve was persistence. wounded while serving in Afghanistan. My MS took a “As a little girl, not even 10 years old, I knew the huge turn south. Meg literally held me together.” strength it took to push my mom around in a wheelchair or pick her up off the ground when she Eventually, the stress of the situation hit had fallen,” Megan said. “I knew how Megan hard. patient to be while I encouraged her to stay hopeful, helping her to walk across “By my junior year in high school, I got the room. I knew how to be strong for my so stressed out trying to balance school, mom when she lost courage.” work and family requirements that Megan’s mother, Kelly, was diagnosed my immune system just couldn’t fight with multiple sclerosis when Megan was off illnesses anymore and I contracted a little girl, stealing away her mother’s shingles,” Megan says. “I was quarantined ability to walk, drive and play with her to my house for two weeks.” children at times. The disease also stole Those two weeks marked a turning away pieces of Megan’s childhood as she point for Megan. She realized she needed Megan Butterman found herself working three jobs by the a lifestyle change to manage the stress of age of 14 to help the family financially. being a caregiver, but she also understood she couldn’t “I had to learn how to hold the family together when be the only child in the world to deal with such stress. our mother couldn’t anymore, and I saw the helplessness She knew she had the ability to change another child’s that my mother felt having to depend on her children for life. support,” she said. “I envision the world where I help children learn to Even with her other obligations, Megan found time let go of their past experiences and embrace life so they to stay involved in school at Rio Rancho Cyber Academy can follow their dreams without being controlled by as the yearbook and newspaper editor. Megan and her their past,” she said. “I don’t want another child to have brothers banded together to keep the family strong for nowhere to go or be too afraid to speak up.” T 8 MSConnection • FALL 2013 Megan knew where she wanted to go in life, but getting there would have its own set of challenges. Many students like Megan face hardships when it comes to financing their education, due to the impact MS has on their family. That is why the National MS Society established the scholarship program – so MS wouldn’t stand in the way of a college education. Each year, scholarships are awarded to outstanding students who have either been diagnosed with MS or who have a parent living with MS. Megan applied for a scholarship to help make her dreams a reality; she was among the 43 high school students and 92 returning college students in the Society’s five-state South Central Region to be awarded a scholarship. Because she was among the top 15 percent of applicants in the United States, Megan was awarded a coveted Top Scholar four-year merit award. After graduating as valedictorian of her graduating class, Megan plans to use her scholarship to attend Fort Lewis College in Durango, Colo. to obtain her bachelor’s degree in psychology. She then anticipates getting her master’s degree in counseling. “The scholarship Meg has been awarded is truly helping to make her dream come true,” Kelly said. Through the scholarship program, Megan will have more than the financial support of the Society; the National MS Society also facilitates connections between scholars, offering peer-support, volunteer and mentoring opportunities. Megan will find herself among an elite group with a shared story and passion. She will no longer feel alone. After college, Megan’s goal is to work at a therapy center for children and families, or to open a non-profit organization to help empower children with difficulties at home. “Meg is so positive that it can’t help but rub off on you,” Kelly said. “She has inspired me to grab life no matter what is in front of you.” Congratulations to the National MS Society’s 2013 Scholars: Michael Bandemer – Bentonville, Arkansas Brian Beckwith – Harrah, Oklahoma Steven Bosmans – San Antonio, Texas Megan Butterman – Rio Rancho, New Mexico Ashlie Clark – Pasadena, Texas Joy Coffield – Richmond, Texas Caitlin Cypert – Sand Springs, Oklahoma Benjamin Fowler – Rio Rancho, New Mexico Sarah Garcia – El Paso, Texas Sierra Gillette – Bartlesville, Oklahoma Lauren Hall – Texarkana, Texas Keara Harrison – Medina, Texas Katherine Hensgens – Welsh, Louisiana Nikko Howard – Austin, Texas Geneva Johnson – Royse City, Texas Bailey Jones – Baytown, Texas Amanda Kirby – Conway, Arkansas Clay Lansdale – San Antonio, Texas Kaillyn Lewis – Missouri City, Texas Anna Libey – Lucas, Texas Erica Lopez – Amarillo, Texas Dallas Loyd – Waskom, Texas Breanne Machacek – Bellville, Texas Haley Madewell – Midland, Texas Amanda Muehr – Bastrop, Texas Ashley Nail – Kingwood, Texas Logan Orozco – Ballinger, Texas Brianna Poche – Baton Rouge, Louisiana Stacy Reyes – Austin, Texas Deavean Rodriguez – Sinton, Texas Veronica Rodriguez – Houston, Texas Holly Rogers – Spring, Texas Brady Sayers – Canyon, Texas Jimmie Slack – New Orleans, Louisiana Kayla Smith – Tulsa, Oklahoma Michael Stanley – Wake Village, Texas Mariah Starr – Grand Prairie, Texas Alexis Stitt – Houston, Texas Madelyn Villarreal – Pearsall, Texas Molly White – Benton, Arkansas Allie Williams – Dry Prong, Louisiana Emily Zeller – Baton Rouge, Louisiana Enrollment for the 2014 Scholarship Program is now open and closes January 15. To learn more about eligibility and the scholarship process, please visit nationalMSsociety.org/scholarship. Moving Toward A World Free of MS 9 A W A RENE S S National Multiple Sclerosis Society: South Central Update Note: The Society’s fiscal year runs from October through September. Following is a status report on the Society’s five-state South Central region for FY2012. The National Multiple Sclerosis Society addresses the challenges of each person affected by MS. To fulfill this mission, the Society funds cutting-edge research, drives change through advocacy, facilitates professional education, collaborates with MS organizations around the world, and provides programs and services designed to help people with MS and their families move forward with their lives. The National MS Society serves more than 400,000 people diagnosed with multiple sclerosis in the United States. This includes nearly 35,000 people in the Society’s South Central states of Arkansas, Louisiana, New Mexico, Oklahoma and Texas. Last year, the Society devoted $121.9 million to programs and services that helped more than one million people. The Society also invested $43.3 million to support more than 350 research projects around the world. How the Dollar is Spent Seventy-eight cents of every dollar spent funded Community Programs, MS Research, National Activities, Professional Education & Training, Programs & Services and Public Education. 28% MS Research 18% National Activities 17% 28% MS Programs Research & Services 17% Fundraising 18% National Activities 7% Community Programs 17% Programs & Services 6% Public Education 17% Fundraising Administration 7% 5% Community Programs 2% Professional Education 6% Public Education & Training 5% Administration Pecentages based on Fiscal Year 2012 2% Professional Education Audited Financial Statements. & Training 10 MSConnection • FALL 2013 South Central Milestones ADVOCACY • 326 South Central MS activists volunteered their time and talents to advocate for change at federal, state and local levels. Led by Government Relations Committee advocacy leaders in their states, MS activists participated in legislative meetings, testified at committee hearings and responded to action alerts to request support for MS policy priorities. BIKE MS • More than 20,000 cyclists rode in the Society’s nine South Central Bike MS fundraising rides in Arkansas, Louisiana, New Mexico, Oklahoma and Texas. • The nine Bike MS rides raised $22.6 million in 2012. CAMPS • 587 children and adults affected by MS, along with their families, took part in South Central camps, annual getaways at accessible locations where everyone can enjoy all activities, regardless of abilities. DIRECT FINANCIAL ASSISTANCE • The Direct Financial Assistance Program provided $322,954 to serve 823 people living with multiple sclerosis. We leveraged $104,447 through community resources to meet requests, which involved necessities such as housing, transportation, home access modifications, respite care services and medical supplies. EDUCATION • 5,804 people participated in MS-related general education programs, presentations and teleconferences. • 2,295 visited with Society personnel at 12 South Central health fairs to learn more about multiple sclerosis. • 122 people participated in the newly diagnosed program, “Moving Forward.” • More than 225 health care professionals took part in professional MS education programs. EMOTIONAL AND SOCIAL WELL-BEING • 1,481 people with MS and their families participated in South Central social programs. FAMILY PROGRAMS • Nearly 1,000 people joined MSrelated workshops and wellness programs geared toward families, care partners, teens (13 – 17 years) and young adults (18 – 21 years). FUNDRAISING • In addition to funds raised through South Central Bike MS and Walk MS events, $1.26 million was raised through individual, foundation and corporate donations; workplace giving; do-it-yourself fundraising events; and tribute, memorial and planned gifts. • 2,000 people attended annual Leadership Events and other activities in FY2012, such as the Renaissance Dinner in New Orleans, La.; Dinner of Champions in West Texas; Uncorking the Cure in Tulsa, Okla.; On the Move Luncheons in Houston, Dallas and Oklahoma City; Smarty Pants Trivia in Oklahoma City; and the Beef-a-thon in the Texas Panhandle. These events raised more than $775,000 for research, programs and services. MS CLINICS • Physicians and scientists at the Society’s network of clinics work to advance knowledge of MS to ultimately improve the quality of life for those living with the disease. Clinics offer comprehensive, convenient services to patients, caregivers and health care professionals. Services can include neurological consultation and disease management, wellness education, coordination of care, mobility assessment, spasticity Moving Toward A World Free of MS 11 management, clinical trials, physical therapy, cognitive assessment and others. • Access to specialized MS care was facilitated through salary support for nurses and social worker MS specialists in South Central MS clinics. These included clinics in Little Rock, Ark.; New Orleans, La.; Oklahoma City, Okla.; Austin, Texas; Dallas, Texas; Houston, Texas; and San Antonio, Texas. • The total amount of funding provided in FY2012 was $570,417. ON THE MOVE LUNCHEONS • 800 people attended South Central On the Move Luncheons in Dallas, Houston and Oklahoma City, raising MS awareness and $385,000 to support research, programs and services. PROGRAMS • For FY2012, $20.16 million was devoted to South Central MS programs, including services for everyone impacted by multiple sclerosis, community programs, research, public education, and professional health care education and training. RESEARCH • South Central funded more than $7.24 million to drive research and treatment to stop disease progression, restore function and end MS forever. The Society supports and funds activities spanning all research stages, including early discovery research, translational research that brings promising ideas forward into actual therapeutic solutions and clinical trials. SCHOLARSHIPS • The Society awarded a total of 123 FY2012 scholarships to college-bound South Central students who have MS or have a parent with MS. There were 48 new scholarships awarded and 75 renewals for previouslyawarded students. A total of $185,500 was awarded in South Central scholarships in FY2012. Scholarship amounts ranged from $1,000 to $3,000 per award. SELF-HELP GROUPS • There are 85 Self-Help Groups in the South Central states, with 982 active members. These groups are open to anyone impacted by multiple sclerosis, and provide fellowship, information and support. VOLUNTEERING • More than 8,000 volunteers pitched in to help the Society in our five South Central states. WALK MS • 26,736 people stepped out at Walk MS events across Arkansas, Louisiana, New Mexico, Oklahoma and Texas. • $3.2 million was raised through South Central’s 2012 Walk MS series. WELLNESS AND EXERCISE • Nearly 40 wellness and exercise classes offered to South Central residents living with MS included seated aerobics, aquatics, art therapy, assisted physical therapy, Pilates, therapeutic horseback riding and yoga. • There were 14,120 wellness interactions in 2012. 12 MSConnection • FALL 2013 Peoples Health Adds Virtual Team to Bike MS: Louisiana n Oct. 5, as cyclists gather at the starting line for the 2013 Bike MS: Louisiana, Peoples Health team captain Erin Hulin and co-captain Alexis Martin can relax a bit. Unlike other participants, their minds will not be consumed with energy-saving strategies or pedaling through Louisiana’s scenic terrain. In fact, they won’t even have their bikes with them; by time the event begins, Hulin and Martin will have already completed their 150-mile ride. For the first time, the two are taking part in the National MS Society’s Virtual Cyclist program, designed for individuals who are interested in fundraising through Bike MS, but unable to ride 150 miles in one weekend. It’s truly virtual; riders can do it anywhere at any time. Hulin and Martin will bike 150 miles at their own pace, on their own time and indoors on stationary bikes. The program has been a blessing for Hulin and Martin, who are not only co-workers, but were both diagnosed with MS a couple of years ago. “This is a great program, especially for someone who wants to take part but can’t because of a GET INVOLVED O health condition,” Martin said. “I might not be able to handle the heat to ride outside, but I can ride in the gym as a virtual rider and still be a part of the team. That’s important to me. I believe in doing anything that helps spread the word about MS with the hope that eventually these fundraisers lead to a cure and a world free of MS.” Hulin said the virtual cyclist program will get a big push thanks to Peoples Health, a Metairie, La.-based Medicare Advantage organization with more than 750 employees serving Medicare beneficiaries in southeast Louisiana. Because Peoples Health contracts with many health and fitness centers in its service area, the company hopes to spread the word through the centers and get more people signed up to participate. As for Hulin, the virtual cyclist program is one of several fundraisers she will participate in this year while she continues to organize other company events to support the National MS Society. As an advocate and MS liaison for Peoples Health, Hulin plans “Lunch & Learns” for employees to find out more about multiple sclerosis; she also created Jeans Day, where employees can pay a fee to dress down. In addition, she leads the Peoples Health “Our Hope” team that participates in the yearly Walk MS: New Orleans. “It’s been a lot of work, but all of it has been worthwhile,” Hulin said. “Peoples Health is extremely supportive and that support starts at the top. The encouragement I get from everyone I work with is tremendous and unwavering, and that gives me hope for my future and encourages me to be optimistic as I live with MS.” For more information on the 2013 Bike MS: Louisiana ride – including how you can participate, volunteer or donate – visit bikeMSlouisiana.org. Moving Toward A World Free of MS 13 LIVING WITH MS My Camp Story: An Amazing New Experience by Peter Loughead Note: The National MS Society offers various South Central-area, all-access camps for persons living with multiple sclerosis. Camper Peter Loughead shares his experience at one of the Society’s recent weekend getaways. hen I read an email about Camp Can Do in May 2013, I was exhausted. I wavered on the decision for quite some time before deciding to give it a try. My mom brought over her car for me to borrow on the trip, since it had a wheelchair lift, but when she arrived, the lift wouldn’t work. It took an hour and a half to create a fix for the lift and, by this time, I was tired from wrestling with the wheelchair and not looking forward to the three-hour drive to camp. However, I decided if I did not go, I would always wonder, so I went and I arrived late. I sheepishly pulled into the parking lot and started to get out of the car in the last available handicap spot. Someone approached and asked if I would rather pull up to the front and unload. Immediately, I was greeted by more people than I could address. My car was unloaded, my wheelchair was untied, and my car was whisked away and parked. I was told not to worry about my bags and just go inside and sign in. Someone at the table said, “There is our missing man,” which was kind of cool because even with how big camp was, I was actually noticed. Things kept getting better from there. I was told that Melissa, my physical therapist from San Antonio, had requested that she be my camp guide. This was awesome news, since I knew Melissa through the Pressing On fitness program I do through the National MS Society. I met up with Melissa and Erika, another trainer from Pressing On, shortly after my arrival. They had decided that I was going to do everything at the camp and whisked me away to sign up. It was still pretty overwhelming, but the night kept getting better. We played bingo and had fun, and then it was time to get some rest. The next morning at breakfast, as I was sitting at a table talking to a group of people, our topic of conversation was sharing who we were. Everyone had their own reason for coming to camp and everyone had their own story. I asked one gentleman at the table how long he’d been diagnosed with MS and he simply said “I don’t have MS.” He could see the confusion on my face, so he said, “That’s the beautiful thing about this place; you don’t know who has MS and who doesn’t.” This was really cool! For a brief moment, we were involved in a culture where we all came together and the social barriers that we lived W 14 MSConnection • FALL 2013 RE S E A R C H with our whole lives didn’t seem to matter. Gender, race, religion, age and ability all melted into one. I spent time between the zip line and horseback riding talking to a guy named Jim. He was a few years older than I am, but our lives have gone down the same path about 30 years apart. It’s truly amazing the people that you run into. I spent a good part of the day making crafts, talking to people and living in the moment. Honestly, the biggest concern on my mind was if my wheelchair would run out of juice before the dance. I’d forgotten my gait belt, so I drove around for the weekend with my legs tied together with a strap that I used to tie my wheelchair down when the car’s lift broke. As silly as it was with me driving around with an orange tie-down strap tying my legs together in a wheelchair, I was not in the least bit embarrassed or self-conscious. The dance was really cool; I got to lead the conga line for a while from my wheelchair! It was really cool to be involved in the excitement. We stayed up late playing games, and telling stories and jokes. It was so much fun! On Sunday, I had to be prepared to say goodbye to this newfound world and culture, but only temporarily. The fact that I now know it exists is amazing! I’m looking forward to staying in touch with the new people I met and I hope to head back to camp again soon. Society Boosts Pediatric MS Research with $2.5 Million T he National Multiple Sclerosis Society recently committed $2.5 million to support research by the Network of Pediatric MS Centers (NPMSC). The funding provides crucial support to drive research that includes searching for the cause of MS by studying risk factors in children. This can help answer additional research questions to advance our understanding of the disease in this vulnerable group. The Society’s renewed investment supports research activities of the individual centers and the University of Utah Data Coordinating and Analysis Center, which is responsible for patient registry and center collaboration. The nine NPMSC members are Texas Children’s Hospital, Boston Children’s Hospital, Loma Linda University, Massachusetts General Hospital, Mayo Clinic College of Medicine, State University of New York at Buffalo, Stony Brook University Medical Center, University of Alabama at Birmingham and University of California San Francisco. “This investment provides the infrastructure and research support needed to keep this unique network ― with the largest group of well-characterized pediatric MS cases in the world moving forward,” said Dr. Timothy Coetzee, National MS Society chief research officer. “Driving research to improve the care of children affected by MS and determining what triggers this disease is part of our commitment to all people living with MS.” The NPMSC was launched in 2006 with Society funding. The network’s goals are to set the standard for pediatric MS care, educate the medical community about this underserved population, and create the framework to conduct critical research both to understand childhood MS and to unlock the mysteries of MS in adults. This initiative, funded through the Society’s Promise: 2010 campaign, laid the groundwork for current NPMSC studies to measure clinical and cognitive manifestations of early-onset multiple sclerosis, and track environmental and genetic triggering. In contrast to adult MS, pediatric MS appears to have a narrower window of onset with more rapid and pervasive cognitive symptoms, which need to be better understood if effective treatments are to be provided. The network has a close alliance with global research efforts through the International Pediatric MS Study Group, convened by the Society in 2002. It now includes leadership from the MS International Federation, other MS societies, and medical and scientific leaders from more than 15 counties. “The Network of Pediatric MS Centers is a strategic investment that will help us achieve our most important goal a world free of multiple sclerosis,” said Cyndi Zagieboylo, president and CEO of the National MS Society. “The network will continue to systematically expand to other centers to enhance research efforts.” Moving Toward A World Free of MS 15 RE S E A R C H Persons with RelapsingRemitting MS Needed for Gilenya Drug Study esearchers are recruiting 2,550 people with relapsingremitting MS to study the safety and effectiveness of a lower dose of Gilenya capsules (fingolimod, Novartis Pharmaceuticals AG) vs. the approved dose, as well as the daily standard dose of Copaxone (glatiramer acetate, Teva Pharmaceutical Industries, Ltd.). The study is funded by Novartis Pharmaceuticals AG. Gilenya was approved by the U.S. Food and Drug Administration (FDA) in 2010 for adults with relapsing forms of MS to reduce the frequency of clinical relapses and to delay the accumulation of physical disability. Gilenya was approved at a .5 mg dose; this study is testing the effectiveness of a lower dose, .25 mg, vs. the approved dose and compared to another approved Louisiana Study site: Hammond Contact Yaira Garzon, Study Coordinator, at 617-640-2711 or email@example.com. Oklahoma Study site: Oklahoma City Contact Micki Moore at the OMRF Multiple Sclerosis Center of Excellence at 405-271-6242 or firstname.lastname@example.org. Study site: Tulsa Contact Barbara Williams at Neurological Associates of Tulsa at 918-728-8021 or email@example.com. R disease-modifying therapy, Copaxone. Copaxone is a synthetic protein that simulates myelin basic protein, a component of the myelin that insulates nerve fibers in the brain and spinal cord. Copaxone is approved by the FDA to reduce the frequency of relapses in patients with relapsing-remitting MS and is also approved for use in individuals at high risk for MS. Participants should be aged 18 through 65, with a diagnosis of relapsing-remitting MS. Within the Societyâ€™s South Central states, investigators are recruiting participants in the following cities. For more details, contact the appropriate study coordinator in your area. Texas Study site: Dallas Contact Sara Gonzales with Texas Neurology at firstname.lastname@example.org. Study site: Houston Contact Sylvia Contreras with Spring Clinical Research, Neurology Clinic at scntrrs@springclinicalresearch. com; Susan Hughes with Baylor College of Medicine at 713-798-6097 or email@example.com; or Dr. Muhammad Akhtar with the University of Texas Medical School at 713-500-7058 or Muhammad.A.Akhtar@uth.tmc.edu. Study site: Round Rock Contact Lori Mayer at Central Texas Neurology Consultants at 512-218-1222 or Lori.Mayer.firstname.lastname@example.org. Study site: San Antonio Contact Cheree Delgado or Margie Arguilar with the Neurology Center of San Antonio at 210-490-0016 x23. Study site: Sherman Contact Laurie Jarvis with Texoma Neurology at 903-893-5141 or email@example.com. 16 MSConnection â€˘ FALL 2013 RE S E A R C H Progress Reported in Understanding What Drives Brain’s Myelin Repair esearchers at the universities of Edinburgh and Cambridge, and at Stanford, have reported separate studies making inroads to understanding factors that stimulate the repair of myelin, the nerve insulation that is a target of multiple sclerosis. Though still in early stages, these important discoveries, supported in part by the National MS Society, could lead to promising new approaches to stimulating myelin repair to restore function in people with MS. Multiple sclerosis attacks the brain and spinal cord, damaging both the myelin coating on nerve fibers and the cells that make myelin. This disrupts nerve connections. Nerve fibers stripped of their myelin coating may become vulnerable to destruction. One approach to repairing myelin is to stimulate the body’s own healing capacity by uncovering mechanisms involved in myelin regeneration. In the Edinburgh/Cambridge study, Drs. Tracy J. Yuen, Charles ffrench-Constant, Robin Franklin and colleagues investigated an immune messenger protein R called endothelin 2 and its potential role in stimulating myelin regeneration. They found it in high levels in areas of tissue damage in brain samples from people who had MS in their lifetimes. Through a series of studies of tissues grown in dishes and the use of mouse models, they also found that endothelin 2 appears to stimulate myelin regeneration, as does a molecule that fits into its biological docking site. In the Stanford study, Drs. Victoria Rafalski, Peggy Ho, Lawrence Steinman, Anne Brunet and colleagues, funded in part by the National MS Society, explored the role of an enzyme called SIRT1. Through a series of studies, they blocked the activity of SIRT1 and observed that mice whose SIRT1 was inactivated showed more robust myelin repair after damage. The researchers note that, because SIRT1 has also been shown necessary for immune attacks to subside and it also plays a role in nerve health, its potential use in MS might require periodic delivery to specific parts of the nervous system. Drug Study Recruiting 1,530 Persons With Secondary-Progressive MS I nvestigators are recruiting 1,530 people with secondary-progressive MS for a phase 3 study testing the safety and effectiveness of the experimental oral therapy siponimod (BAF312, Novartis Pharmaceuticals AG) vs. inactive placebo. The study is funded by Novartis Pharmaceuticals AG. Siponimod is a selective sphingosine 1-phosphate receptor modulator. It is thought to act by retaining certain white blood cells in the body’s lymph nodes, keeping them out of circulation and from entering the central nervous system. Siponimod also distributes effectively to the central nervous system where it may have direct anti-inflammatory or neurobioloical effects. Participants should be aged 18 through 60, with a diagnosis of secondary-progressive MS. Study participants cannot have had a recent relapse treated with corticosteroids. To learn more about the enrollment criteria for this study, and to find out if you are eligible to participate, call 1-888-669-6682. Sites are going to be recruiting in the following cities within the National MS Society’s South Central States: Albuquerque, New Mexico; Oklahoma City, Oklahoma; Dallas, Texas; Lubbock, Texas; Round Rock, Texas; and San Antonio, Texas. Moving Toward A World Free of MS 17 RE S E A R C H Joint Medical Meeting Focuses on Research Progress and MS Clinical Care M ore than 1,800 health professionals focused on MS at this summer’s 27th Annual Meeting of the Consortium of Multiple Sclerosis Centers (CMSC), the 18th Annual Meeting of Americas Committee on Treatment and Research in Multiple Sclerosis (ACTRIMS) and the 5th Cooperative Meeting of these two organizations. Here is a sample of some of the findings, among more than 200 presentations on research seeking to stop MS, to restore function to persons who have MS and to end the disease forever. male and female sex chromosomes influence the response of the nervous system to injury. In female mice genetically engineered to express the male (XY) or female (XX) chromosome, XY mice experienced a more severe MS-like disease with more nerve tissue damage in the brain and spinal cord. Interestingly, immune responses did not differ. If confirmed in further studies, such findings may help to explain why MS progression occurs faster in men. Improved balance and walking Because of mobility problems and other symptoms, people with MS are at significant risk for falls. Debra Frankel (National MS Society) and colleagues reported that participants in the Free from Falls program developed by the Society improved in balance and walking, and the psychological impact of falls was reduced. Results were sustained six months after the program, with improvements in confidence and decreases in fear of falling. Decreased fall risk through exercise Dr. Jacob Sosnoff (University of Illinois at UrbanaChampaign) found that fall risk decreased significantly and balance improved in 10 people who participated in a 12-week, home-based exercise program focusing on balance and lower limb muscle strength, compared with 12 controls who did not participate. Dr. Sosnoff has additional funding from the Society’s pilot program to continue studying how exercise can be used to prevent falls in people with MS. Bone marrow transplantation trial Dr. Richard Nash (Colorado Blood Cancer Institute, Denver) and colleagues are following 24 people with highly active relapsing-remitting MS who were treated with bone marrow transplantation. In this experimental treatment, people are given infusions of their own bone marrow, which is first extracted and treated, to rid the body of immune cells that drive the MS attack. The two-year results showed that both relapses and disease activity observed on MRI scans were significantly reduced. There was significant loss of brain tissue volume at one year, which then stabilized. Participants are being followed for five years. Additional research, currently underway, is needed to weigh the risks and benefits of this experimental procedure. Gender and disease MS is more common in women, but men tend to get more severe disease. Sienmi Du and colleagues (University of California, Los Angeles) tested whether 18 MSConnection • FALL 2013 Medication management and fall risks Drs. Lisa Vingara (Oregon Health and Science University, Portland) examined falls among 53 people with MS who took from zero to 19 medications. Those taking no medications had a 27 percent risk of falls; the odds of a fall increased by 33 percent with each additional medication. Medications acting on the nervous system were significantly associated with increased fall risk, but not medications affecting the immune or cardiac system. Larger studies are needed to confirm how medications might affect fall risk, so clinicians can consider this important aspect of MS management to help people maintain mobility. Video chatting improves exercise behavior Dr. Lara Pilutti and colleagues (University of Illinois at Urbana-Champaign) were funded by a Society grant to examine whether video-chat sessions with a behavior change coach could improve the results of a six-month physical activity program. Results show significant improvements in increasing physical activity – as well as reducing fatigue, depression and anxiety – among participants. Estrogen and repair Dr. Stephen Nye (Endece, LLC) and colleagues reported on a study of the molecules that the sex hormone estrogen acts on in the brain and spinal cord. Estrogen is being studied for its potential to treat MS. The investigators reported that the molecule NDC-1308 reduced cell death in the spinal cord of mice with MS-like disease and activated genes important in the development of myelin-making cells. The company is supporting preclinical research to develop NDC-1308 as a possible future treatment for repairing damage in MS. Characterizing disease in Hispanic/Latinos with MS The Society funded Dr. Jacob McCauley and a team including Dr. Kottil Rammohan (University of Miami) to study 287 Hispanic/Latinos with MS and compare their experiences to 275 non-Hispanic whites. They reported that Hispanic/Latinos were more likely to experience symptoms of motor weakness, ataxia (problems with muscle control) and bladder problems. Hispanic/Latinos responded more favorably to interferon treatments. The Society’s Hispanic/Latino Advisory Council advises the Society on strategies and programs to overcome cultural barriers and make resources more available to this community. Examining virus genes in primary-progressive MS Infectious agents have been investigated at various times as possible triggers of MS, but no single virus or bacterium has been proved to cause the disease. Dr. John Kriesel (University of Utah, Salt Lake City) was previously funded by the Society to use novel genetics technology to determine the presence of viruses or bacteria that may not have been identified yet in people with MS. In the study reported here, he and colleague Dr. Benjamin Chan and others used a technique called “deep sequencing” to examine 14 people with primary progressive MS and seven controls without MS. The activity of genes that instruct viruses known as retroviruses was significantly increased in people with primary-progressive MS. Further studies, soon to get underway with Society funding, are necessary to determine the significance of these findings. The Sonya Slifka Longitudinal MS Study This study was established by the Society in 2000. It studies demographic and disease characteristics, use and cost of health services, access to care, quality of life, and treatment among 4,500 Americans with MS. Dr. Sarah Minden (Brigham and Women’s Hospital, Boston) reported that information from this study is being made available to qualified investigators, along with the services of the study team. Studies underway include the direct and indirect costs of MS, impact of out-of-pocket costs, financial implications of informal caregiving, pregnancy and mental health treatment. This database is a unique tool for gathering data to support advocacy, programming and policymaking efforts to aid everyone affected by multiple sclerosis. Moving Toward A World Free of MS 19 National Multiple Sclerosis Society South Central Chapter 8111 North Stadium Drive, Suite 100 Houston, Texas 77054 A-ha! Do you have a golden idea? A unique and innovative solution that can improve the lives of people living with MS? MS Entrepreneurs is a grant program that can provide you with funding and support to bring this vision to life. Visit MSentrepreneurs.org to learn more and complete your application by October 15, 2013. entrepreneurs presented by Kanaly Trust