In this issue:In this issue:

FALL 2013

M o v i n g T o w A r d A w o r L d F r e e o F M S

Tyranny of theTo-Do List

A Song of Faithfor Brianna Poché

Top ScholarMegan Butterman

South CentralUpdate & Milestones

MakingConnections

to Stop MS

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.

MS SToPS PeoPLeFroM Moving

we eXiST To MAKe SUre iT doeSn’T. Join THe MoveMenT

The official magazine of the National Multiple Sclerosis

Society: South CentralArkansas • Louisiana • New Mexico

Oklahoma • Texas

1-800-344-4867

Board of Trustees ChairmanERNEST JOHNSON

HOUSTON, TEXAS

TreasurerDON McCORMACk

MIDLAND, TEXAS

SecretaryDAVID CARDERTULSA, OkLAHOMA

Regional Executive Vice PresidentMARk NEAgLI

MSConnection EditorJAMES BLACk

Fort Worth Office ClosesAug. 31; Wellness Classes to Continue at New LocationThe 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, 2013Hyatt Regency HotelNew 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 at504-322-3788 or by email at jennifer.simon@nmss.org.

Fall 2013VOLUME 7 • ISSUE 4

© 2013 National Multiple Sclerosis Society: South Central

GetConnected

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.

The Tyranny of the To-Do Listby Jennifer LaRue Huget

Living wiTH MS

FRIDAY, NOVEMBER 15, 2013 • 7-11 PMHyatt Regency • 601 Loyola Avenue • New Orleans, LA 70113

Silent & Live Auctions • Wine PullMusic by Bucktown All-Stars

Moving Toward a world Free oF MS 3

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, down-to-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 paw-paw 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

A Song of Faith by Brianna Poché

Living wiTH MS

MSConnection • FALL 20134

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.

Recognizing 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

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.

Dive Into RecoveryProgram Makes Big Splash

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.

Living wiTH MS

Moving Toward a world Free oF MS 5

“I feel pain when I see young people in wheelchairs.”

This 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

Strengthening the Bonds of Empathyby Laurie Clements Lambeth

AwA r e n e S S

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MSConnection • FALL 20136

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.

The 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.

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 well-deserved. Congratulations on your great work and this important recognition.

Congratulations to Dr. Bridget Bagert

Moving Toward a world Free oF MS 7

The words that express Megan Butterman’s childhood are not words that would typically be used to

describe most girls or boys. But early in Megan’s life, family and friends began looking toward this young girl from Rio Rancho, New Mexico for bravery, power and persistence. “As a little girl, not even 10 years old, I knew the strength it took to push my mom around in a wheelchair or pick her up off the ground when she had fallen,” Megan said. “I knew how patient to be while I encouraged her to stay hopeful, helping her to walk across the room. I knew how to be strong for my mom when she lost courage.” Megan’s mother, Kelly, was diagnosed with multiple sclerosis when Megan was a little girl, stealing away her mother’s ability to walk, drive and play with her children at times. The disease also stole away pieces of Megan’s childhood as she found herself working three jobs by the age of 14 to help the family financially. “I had to learn how to hold the family together when our mother couldn’t anymore, and I saw the helplessness that my mother felt having to depend on her children for support,” she said. Even with her other obligations, Megan found time to stay involved in school at Rio Rancho Cyber Academy as the yearbook and newspaper editor. Megan and her brothers banded together to keep the family strong for

her parents. But in 2011, Megan’s family took one blow after another. “When my husband left me after 29 years of marriage, I was devastated,” Megan’s mom, Kelly, said. “Only two months prior to this, my brother Steve was wounded while serving in Afghanistan. My MS took a huge turn south. Meg literally held me together.”

Eventually, the stress of the situation hit Megan hard.

“By my junior year in high school, I got so stressed out trying to balance school, work and family requirements that my immune system just couldn’t fight off illnesses anymore and I contracted shingles,” Megan says. “I was quarantined to my house for two weeks.” Those two weeks marked a turning point for Megan. She realized she needed a lifestyle change to manage the stress of

being a caregiver, but she also understood she couldn’t be the only child in the world to deal with such stress. She knew she had the ability to change another child’s life. “I envision the world where I help children learn to let go of their past experiences and embrace life so they can follow their dreams without being controlled by their past,” she said. “I don’t want another child to have nowhere to go or be too afraid to speak up.”

geT invoLved

Society Scholarships Allow Students a Chance to Make A Differenceby Stacy Smith and Kelly Tullbergwith contributions from volunteers Jeff Harrison and Lori Boyd

Megan Butterman

MSConnection • FALL 20138

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.”

enrollment for the 2014Scholarship Program is nowopen and closes January 15. To learn more about eligibility and the scholarship process, please visitnationalMSsociety.org/scholarship.

Congratulations to the national MS Society’s 2013 Scholars:Michael Bandemer – Bentonville, Arkansas

Brian Beckwith – Harrah, oklahomaSteven Bosmans – San Antonio, Texas

Megan Butterman – rio rancho, new MexicoAshlie Clark – Pasadena, TexasJoy Coffield – Richmond, Texas

Caitlin Cypert – Sand Springs, oklahomaBenjamin Fowler – rio rancho, new Mexico

Sarah garcia – el Paso, TexasSierra gillette – Bartlesville, oklahoma

Lauren Hall – Texarkana, TexasKeara Harrison – Medina, Texas

Katherine Hensgens – welsh, Louisiananikko Howard – Austin, Texas

geneva Johnson – royse City, TexasBailey Jones – Baytown, Texas

Amanda Kirby – Conway, ArkansasClay Lansdale – San Antonio, TexasKaillyn Lewis – Missouri City, Texas

Anna Libey – Lucas, Texaserica Lopez – Amarillo, Texasdallas Loyd – waskom, Texas

Breanne Machacek – Bellville, TexasHaley Madewell – Midland, TexasAmanda Muehr – Bastrop, TexasAshley nail – Kingwood, TexasLogan orozco – Ballinger, Texas

Brianna Poche – Baton rouge, LouisianaStacy reyes – Austin, Texas

deavean rodriguez – Sinton, Texasveronica rodriguez – Houston, Texas

Holly rogers – Spring, TexasBrady Sayers – Canyon, Texas

Jimmie Slack – new orleans, LouisianaKayla Smith – Tulsa, oklahoma

Michael Stanley – wake village, TexasMariah Starr – grand Prairie, Texas

Alexis Stitt – Houston, TexasMadelyn villarreal – Pearsall, Texas

Molly white – Benton, ArkansasAllie williams – dry Prong, Louisianaemily Zeller – Baton rouge, Louisiana

Moving Toward a world Free oF MS 9

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.

Seventy-eight cents of every dollar spent funded Community Programs, MS Research, National Activities, Professional Education & Training, Programs & Services and Public Education.

A w A r e n e S S

National Multiple Sclerosis Society:

South Central UpdateNote: 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.

Pecentages based on Fiscal Year 2012Audited Financial Statements.

How the dollar is Spent28% MS Research

18% National Activities

17% Programs & Services

17% Fundraising

7% Community Programs

6% Public Education

5% Administration

2% Professional Education & Training

28% MS Research

18% National Activities

17% Programs & Services

17% Fundraising

7% Community Programs

6% Public Education

5% Administration

2% Professional Education & Training

MSConnection • FALL 201310

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 FINANCIALASSISTANCE• 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 ANDSOCIAL WELL-BEINg• 1,481 people with MS and their

families participated in South Central social programs.

FAMILY PROgRAMS• Nearly 1,000 people joined MS-

related 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

South Central Milestones

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 MOVELUNCHEONS• 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 previously-awarded 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.

MSConnection • FALL 201312

On 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

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.

Peoples HealthAdds Virtual Team toBike MS: Louisiana

geT invoLved

Moving Toward a world Free oF MS 13

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.

When 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

My Camp Story: An

Amazing New Experienceby Peter Loughead

Living wiTH MS

MSConnection • FALL 201314

Society Boosts PediatricMS Research with $2.5 Million

The 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.”

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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.

Moving Toward a world Free oF MS 15

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Persons with Relapsing-Remitting MS Needed for Gilenya Drug StudyResearchers are recruiting 2,550 people with relapsing-

remitting 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

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 Society’s South Central states, investigators are recruiting participants in the following cities. For more details, contact the appropriate study coordinator in your area.

Study site: DallasContact Sara Gonzales

with Texas Neurology atsgonzales@texasneurology.com.

Study site: HoustonContact Sylvia Contreras with Spring Clinical Research, Neurology Clinic at scntrrs@springclinicalresearch.

com; Susan Hughes with Baylor College of Medicine at

713-798-6097 or sh11@bcm.edu; 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 RockContact Lori Mayer at CentralTexas Neurology Consultants

at 512-218-1222 orLori.Mayer.msn@gmail.com.

Study site: San AntonioContact Cheree Delgado or

Margie Arguilar with the Neurology Center of San Antonio

at 210-490-0016 x23.

Study site: ShermanContact Laurie Jarvis with Texoma

Neurology at 903-893-5141 or ljarvis@texomaneurology.com.

TEXASLOUISIANAStudy site: Hammond

Contact Yaira Garzon, Study Coordinator, at 617-640-2711

or yaira.garzon@gmail.com.

OkLAHOMAStudy site: Oklahoma CityContact Micki Moore at the

OMRF Multiple Sclerosis Centerof Excellence at 405-271-6242

or micki-moore@omrf.org.

Study site: TulsaContact Barbara Williams at

Neurological Associatesof Tulsa at 918-728-8021 or

neurotwo@aol.com.

MSConnection • FALL 201316

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Progress Reported in UnderstandingWhat Drives Brain’s Myelin Repair

Researchers 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

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 PersonsWith Secondary-Progressive MS

Investigators 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

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More 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. Hereisasampleofsomeofthefindings,amongmore than 200 presentations on research seeking to stop MS, to restore function to persons who have MS and to end the disease forever. Bone marrow transplantation trialDr. 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 bonemarrow,whichisfirstextractedandtreated,torid the body of immune cells that drive the MS attack. The two-year results showed that both relapses and diseaseactivityobservedonMRIscansweresignificantlyreduced.Therewassignificantlossofbraintissuevolumeat one year, which then stabilized. Participants are being followedforfiveyears.Additionalresearch,currentlyunderway,isneededtoweightherisksandbenefitsofthis experimental procedure.

gender and diseaseMS is more common in women, but men tend to get more severe disease. Sienmi Du and colleagues (University of California, Los Angeles) tested whether

maleandfemalesexchromosomesinfluencetheresponse 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 responsesdidnotdiffer.Ifconfirmedinfurtherstudies,suchfindingsmayhelptoexplainwhyMSprogressionoccurs faster in men.

Improved balance and walkingBecause of mobility problems and other symptoms, peoplewithMSareatsignificantriskforfalls.DebraFrankel (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 theprogram,withimprovementsinconfidenceanddecreases in fear of falling.

Decreased fall risk through exerciseDr. Jacob Sosnoff (University of Illinois at Urbana-Champaign)foundthatfallriskdecreasedsignificantlyand 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.

Joint Medical Meeting Focuses on Research Progress and MS Clinical Care

MSConnection • FALL 201318

Medication management and fall risksDrs. 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 thenervoussystemweresignificantlyassociatedwithincreased fall risk, but not medications affecting the immune or cardiac system. Larger studies are needed toconfirmhowmedicationsmightaffectfallrisk,soclinicians can consider this important aspect of MS management to help people maintain mobility.

Video chatting improves exercise behaviorDr. 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 physicalactivityprogram.Resultsshowsignificantimprovements in increasing physical activity – as well as reducing fatigue, depression and anxiety – among participants.

Estrogen and repairDr. 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 inHispanic/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 MSInfectious 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 bacteriathatmaynothavebeenidentifiedyetinpeoplewith 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 asretroviruseswassignificantlyincreasedinpeoplewith primary-progressive MS. Further studies, soon to get underway with Society funding, are necessary to determinethesignificanceofthesefindings.

The Sonya Slifka Longitudinal MS StudyThis 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 madeavailabletoqualifiedinvestigators,alongwiththeservices of the study team. Studies underway include the direct and indirect costs of MS, impact of out-of-pocket costs,financialimplicationsofinformalcaregiving,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 SocietySouth Central Chapter8111 North Stadium Drive, Suite 100Houston, Texas 77054

A-ha!Do you have a golden idea? A unique and innovative solution that can improve the lives of people livingwith 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 andcomplete your application by October 15, 2013.

entrepreneurs

presented by Kanaly Trust