Winter 2014 MSConnection: South Central edition by National MS Society: South Central

MOVING TOWARD A WORLD FREE OF MS WINTER 2014

COUNTRY SINGER

JULIE

ROBERTS FINDS HER PLACE IN THE SUN

In this issue:

Teen Helps Grandmother with Creative MS Therapy

Advances In MS Research

Chalking It Up for MS

Neuroscientist Receives First Barancik Prize

If You or Someone You Know Has MS Studies show that early and ongoing treatment with an FDA-approved therapy can reduce future disease activity and improve quality of life for many people with multiple sclerosis. Talk to your health care professional or contact the National MS Society at nationalMSsociety.org or 1-800-344-4867 to learn about ways to help manage multiple sclerosis and about current research that may one day reveal a cure.

The official magazine of the National Multiple Sclerosis Society: South Central Arkansas • Louisiana • New Mexico • Oklahoma • Texas

1-800-344-4867 Board of Trustees Chairman ERNEST JOHNSON HOUSTON, TEXAS

Treasurer DON McCORMACK MIDLAND, TEXAS

Secretary DAVID CARDER TULSA, OKLAHOMA

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.

MS STOPS PEOPLE FROM MOVING

WE EXIST TO MAKE SURE IT DOESN’T. JOIN THE MOVEMENT

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.

Winter 2014 VOLUME 8 • ISSUE 1

We Want You! MSAmbassadors are a group of dedicated volunteers that raise awareness about multiple sclerosis and the Society’s programs and services. These official envoys educate, engage and encourage others to do something about MS now!

Apply Today To learn more about what it takes to become an MSAmbassador, email lee.kilborn@nmss.org or fill out an interest form at VolunteerMS.org. Together we will end MS.

MSAmbassadors South Central Offices ARKANSAS

Little Rock 1100 N. University, Ste. 255 Little Rock, AR 72207 Phone: 501-663-8104

Tulsa 4606 East 67th St., Ste. 103 Tulsa, OK 74136 Phone: 918-488-0882

Houston 8111 N. Stadium Drive, Ste. 100 Houston, TX 77054 Phone: 713-394-2900

TEXAS LOUISIANA

Metairie/New Orleans 4613 Fairfield St. Metairie, LA 70006 Phone: 504-322-3790 NEW MEXICO

Albuquerque 3540 Pan American Fwy NE, Ste. F Albuquerque, NM 87107 Phone: 505-243-2792 OKLAHOMA

Oklahoma City 730 W. Wilshire Blvd., Ste. 103 Oklahoma City, OK 73116 Phone: 405-488-1300

Amarillo 6222 Canyon Drive Amarillo, TX 79109 Phone: 806-468-8005

Lubbock 3610 22nd St., Ste. 301 Lubbock, TX 79410 Phone: 888-999-7992

Austin 9600 N. Mopac, Ste. 150 Austin, TX 78759 Phone: 512-340-2700

Midland 1031 Andrews Highway, Ste. 304C Midland, TX 79701 Phone: 432-522-2143

Dallas 2105 Luna Road, Ste. 390 Carrollton, TX 75006 Phone: 469-619-4700 Fort Worth 4086 Sandshell Drive Fort Worth, TX 76137 Phone: 817-306-7003

San Antonio 9830 Colonnade Blvd., Ste. 130 San Antonio, TX 78230 Phone: 210-694-3200

MOVING TOWARD A WORLD FREE OF MS

GetConnected Save the Date! 2014 New Mexico Public Policy Conference Mark your calenders for Jan. 29, 2014 for the 2014 New Mexico Public Policy Conference in Santa Fe, New Mexico! To register or learn more, visit MSnewmexico.org. National MS Society’s South Central Annual Meeting Feb. 7, 2014 A research and organization update for the South Central states of Arkansas, Louisiana, Oklahoma, New Mexico and Texas. For details on how to participate, contact Kelly Moran at kelly.moran@nmss.org. Volunteer to Make a Difference Volunteer with the National Multiple Sclerosis Society. Volunteer opportunities are available for all talents and skills, and for one-time or ongoing activities. Volunteering

is a great activity for individuals and families, and for groups from schools, churches and companies. For information on volunteering in Arkansas, Louisiana, New Mexico, Oklahoma or Texas, visit volunteerMS.org or call the National MS Society toll-free at 1-800344-4867. Step Up and Saddle Up: Walk MS and Bike MS For information on the 2014 Walk MS and Bike MS near you – including how to participate, volunteer or donate – visit walkMS.org and bikeMS.org today, or call the Society at 1-800344-4867. Share Experiences with Self-Help Groups The Society’s Self-Help Groups are ways for persons with multiple

sclerosis, their families and friends to meet others affected by MS. While most groups meet in-person, other groups connect online or by telephone. Group meetings provide settings to share common experiences and concerns, network with others, give and get emotional support, and receive MS-related information from peers and guest speakers. Self-Help Groups are facilitated by trained Society volunteers. To learn more, call us at 1-800-344-4867. Get Connected Online You can join the conversation from the convenience of your home with the Society’s online MS community at MSconnection.org. Learn about topics that are important to you, connect with others, and have expert MS information and opinions at your fingertips.

Photo courtesy of Sarah Jean Photography. (SarahHudiburg.com)

Kendra Scott “Shop for a Cause” Event Benefiting the Dallas On the Move Luncheon

MSConnection • WINTER 2014

On July 18, 2013, Kendra Scott partnered with the National MS Society to host a “Shop for a Cause” event benefiting the Dallas On the Move Luncheon. Twenty percent of the sales from the evening were donated to the On the Move Luncheon. With more than 150 people in attendance, the event raised more than $2,000.

Bike MS Gets Pumped Up for 2014 B ike MS is a series of 100 extraordinary cycling events across the United States that raise awareness of MS and money to drive research to fight this unpredictable disease. Tens of thousands of cyclists and volunteers join these annual events organized by the National MS Society, with one shared destination: a world free of multiple sclerosis. In the Society’s South Central states – Arkansas, Louisiana, New Mexico, Oklahoma and Texas – there are nine Bike MS weekend rides held between April and October.

In 2013, Bike MS cyclists covered a total of more than 10.5 million miles. That’s the equivalent of traveling round-trip across our five South Central states – from New Orleans to Little Rock to Oklahoma City to Albuquerque to Houston and back to New Orleans (with plenty of restroom breaks in-between, of course) – more than 3,900 times! For information on our local Bike MS events – to participate, volunteer or donate – visit bikeMS.org or call the Society at 1-800-344-4867.

Volunteering with the Society by Kelly Moran I

n schools, three out of five volunteers are parents. Parents seem to know that by getting involved, they can strengthen the experience their child has at school. Could someone else do it? Yes. Do they let them? No. At the National MS Society, we need you. Volunteering is for everyone whose life is touched by MS; by knowing a beloved friend, parent or family member, or living with multiple sclerosis yourself. Together we will create a world free of MS.

Volunteer opportunities impact the most important work of the organization. People share their expertise with us to lead self-help groups, provide professional services, produce the logistics behind our events, connect with people living with MS and so much more. The National MS Society hosts volunteer orientations to give you the opportunity to learn both about the organization and all the ways to get involved. New this year orientation is available virtually, making attendance possible in every part of our region. In-person attendance is also available at our

Houston, North Texas and San Antonio offices. Sign up today! Your contribution will help bring us closer to a world free of MS. Upcoming 2014 dates for volunteer orientations are Jan. 16, March 20 and May 15.

Kelly Moran is a Vice President with the National MS Society’s Houston office. For details on volunteering and how to take part in an upcoming volunteer orientation, she can be reached via email at kelly.moran@ nmss.org or by phone at 713-3942900 (press 2).

MOVING TOWARD A WORLD FREE OF MS

CONNECTING

Connecting for a World Free of MS by Mark Neagli

our commitment, passion and dedication are a driving force of MS research and treatment, creating a MS research revolution. We are grateful for the many connections you bring, the leadership you provide, the voice you lend and the funds you raise to create a world free of MS. You are changing the world for people living with multiple sclerosis. The National Multiple Sclerosis Society has a highly respected scientific and management process, and we fund more MS research than any other private organization in the world. We drive collaboration among researchers around the globe to speed progress. Through our fellowship programs, we have launched the careers of more than 800 MS scientists and we have funded research leading to the discovery of available MS therapies. Our current focus is on finding solutions for people with progressive forms of MS. The Society’s current $250 million NOW Campaign (No Opportunity Wasted) - aimed at STOPPING MS disease progression, RESTORING lost function, and ENDING MS forever - would not be possible without you. South Central just pledged an additional $1.5 million to the NOW Campaign. In the last three years, the total MS research projects funded by the National MS Society are 349 projects for a total of $133,507,874 and $48.2 million in 2013 alone. Speeding effective treatments to people living with MS is a top priority for the National MS Society. Two of the most recent advancements and findings from the NOW Campaign are Estriol, of which South

MSConnection • WINTER 2014

Central funded the initial amount of $1 million to get the project started, and Repurposing Ibudilast. Dr. Rhonda Voskuhl at UCLA is in the final stages of a Society-NIH funded trial to see whether Estriol can reduce disease and improve learning and memory in women with MS. The Society is also joining with the National Institutes of Health to fund a major trial of oral Ibudilast, a repurposed therapy, in primary-progressive MS and secondary-progressive MS. Other ground-breaking MS research includes how dietary salt may stimulate activity of key immune cells involved in MS attacks; skin-derived stem cells from people generate new nerve-insulating myelin in mice; and early clinical trial shows feasibility of reducing immune responses in people with MS using their own altered blood cells. Together, we are changing the world for people affected by MS. South Central maintains measurements and outcomes on MS result highlights for each of the Society’s five Strategic Response goal areas. A few highlights showing the immense impact we are making on MS are: Accesses to MS Care through Partners in MS Care A Partner in MS Care is a formal relationship between the National MS Society and a health care provider. It indicates that the health professional meets the criteria, related to education, experience, knowledge and expertise in MS care, for such a designation. The health professional and the

Society have a strong, mutually supportive, patient centered, collaborative relationship. The health professional is highly engaged in Society programs and/or events and routinely refers people with MS directly to the Society. Over the last quarter, ten new Partners in MS Care agreements were established in South Central, bringing the total number of Partners to fifteen and five more in the works. Addressing the Financial Impact of MS Direct Financial Assistance Program, Community Partnerships, Scholarship Program and Scholar Engagement: We help families facing financial hardship related to their MS diagnosis. Assistance includes purchase of medical equipment such as wheelchairs and walkers, transportation to medical appointments, and home accessibility modifications. At mid-year (October â&#x20AC;&#x201C; June) 2013, Programs and Services Team Members completed 672 interventions with individuals and families impacted by MS, with $233,000 provided in Society grants and $67,000 provided through leveraged community resources. Our team also develops community partnerships and connects people living with MS with the available resources to address their long term needs. At mid-year 2013 we served 84 more individuals with crisis assistance. As far as scholarships, this year a panel of volunteer reviewers in South Central awarded $186,000 in scholarships to 136 students personally impacted by MS. MS Activists Making Connections MS Activists are building connections with policymakers, raising awareness and laying the foundation for continued success in creating policies that benefit people affected by MS. Some activities from October to June include: 132 e-communications to state action networks; 69 Action Alerts in support of MS priority legislation; 1,452 emails sent to legislators; and 85 Facebook posts in support of MS Activism. There were 1,500 communications between activists and their legislators; activists are using their voice to make a difference. MS Activists in Arkansas, Oklahoma and New Mexico passed state legislation addressing affordability of the MS Disease Modifying drugs. The three bills were modeled after successful legislation previously passed with support from MS Activists in Texas and Louisiana. Your connections are important catalysts that keep us all going; together our connections will create a world free of MS. Thank you!

Mark Neagli is the Regional Executive Vice President of the National MS Society: South Central. He can be reached via email at mark.neagli@nmss.org or by phone at 713-394-2900 (press 2 when asked).

Worldwide MS Cases Hit 2.3 Million T

he number of people living with multiple sclerosis around the world has increased by 10 percent in the past five years to 2.3 million, according to the most extensive survey of the disease to date. The new statistics come from the Multiple Sclerosis International Federationâ&#x20AC;&#x2122;s recently-released Atlas of MS 2013. MS is most common in North America and Europe, at 140 and 108 cases per 100,000, respectively. By comparison, in sub-Saharan Africa, the rate is 2.1 cases per 100,000. Big increases were also found in the number of medical experts trained to diagnose MS and help patients with treatment, while the number of magnetic resonance imaging (MRI) machines available to carry out scans has doubled in emerging countries. However, disparities remain when it comes to access to modern diseasemodifying drugs. MS medicine has seen a number of advances in recent years, especially with the introduction of oral therapies. These medicines offer an effective alternative to older treatments that are given by injection. The worldwide survey found that injectable MS drugs were partly or fully funded in 96 percent of high-income countries. However, none of the injectable drugs was available under government programs in low-income countries.

MOVING TOWARD A WORLD FREE OF MS

A DVO C AC Y

Capitol Hill Briefing Calls for More MS Research Funding S

peaking to a U.S. Congressional assembly, MS activist Karen Knable Jackson said, “I sit before you to put a face to primary progressive MS, but also to show that what is decided here on Capitol Hill has a direct effect on real people.” Jackson was part of a National Multiple Sclerosis Society delegation that traveled to Washington, D.C. this fall for a briefing on progressive MS. Speakers at the Capitol Hill briefing were National MS Society President and CEO Cyndi Zagieboylo; the Society’s Chief Research Officer Tim Coetzee, Ph.D.; Executive Vice President of Advocacy Bari Talente; Peter Calabresi, M.D., Professor of Neurology and Director of the Johns Hopkins Multiple Sclerosis Center; and Jackson, an MS activist and person living with primary progressive MS. Officials from more than 40 bipartisan House and Senate offices attended the meeting. Speakers educated the Congressional audience about progress that has been made in the MS mission

MSConnection • WINTER 2014

in the past 20 years. Presenters credited these advances largely to medical research funding provided by the National Institutes of Health (NIH) and the National MS Society. Annually, the NIH funds about $115 million in MS research, while the Society – independently or in partnership with the NIH – funded $43.2 million in research in 2012. Although progress is noteworthy, speakers also highlighted the significant void that exists: that there are currently no treatments available for persons living with progressive MS. Dr. Calabresi stated that “existing disease-modifying therapies are effective only for some people” and there are “no approved therapies for progressive MS.” Society representatives repeatedly emphasized the organization’s commitment to increase its investment in MS research. This commitment is part of the Society’s campaign to stop disease progression, restore function and end MS forever. The Society called on lawmakers to increase funding for the NIH.

A DVO C A C Y

Society Honors Its Legislative Champions by Claire Mitchell and Kelly Tullberg

ach year, the National MS Society honors key legislators for their outstanding work and extraordinary commitment to improving the lives of individuals living with MS and other chronic illnesses. This past fall, the South Central Region honored eight state legislators, whose efforts are helping to make sure individuals living with MS won’t have to decide between paying for their medicine versus their summer utility bills or face unexpected increases in their prescription drug copayments. This year’s recipients include: Senator Jon Woods and Representative Justin T. Harris were presented with the 2013 Arkansas Legislative Champion Awards at A Vintage Affair for MS in Little Rock on Sept. 26. Gov. Mike Beebe and Representative John Baine were also in attendance to see the legislators acknowledged for their outstanding efforts on behalf of Arkansans living with MS. Both legislators co-sponsored MS priority legislation to address unexpected changes in prescription drug prices. Thanks to their commitment and hard work, in partnership with Arkansas MS Activists, the bill passed and is now law, requiring insurance companies to provide 60 days advance written notice of increases in copayments for prescription drugs. This will give families the time they need to talk with their physicians if they need to make adjustments, and to plan and budget for increases to their out of pocket health care costs. In New Mexico, Senator Jacob Candelaria and Representative Gail Chasey were also honored for their work on legislation to address unexpected changes to prescription drug coverage, which was signed into law

this year. As a sophomore legislator, Senator Candelaria has stepped in to be a valuable partner on behalf of New Mexicans living with chronic illness. Senator David Holt and Representative Gus Blackwell were honored as 2013 Oklahoma Legislative Champions for their work on prescription drug coverage. The bill passed with unanimous votes in the Oklahoma Senate and House and was signed into law by Governor Mary Fallin. The Society presented the Texas Legislative Champion Awards to Representatives Sylvester Turner and John Zerwas this year. Rep. Turner was honored at the September Board Meeting in Houston for being a steadfast supporter of the System Benefit Fund, which will help low-income Texans, including those living with MS, to afford to stay cool and healthy during the hot summer months. Representative Zerwas was honored at the Walk MS Houston on Nov. 10 in recognition of his efforts to find a “Texas solution” for Medicaid Expansion that would have helped more than 1 million low-income Texans gain access to health insurance. Congratulations and thank you to each of the 2013 Legislative Champions! The Society is also grateful for the more than 5,700 individuals registered as MS activists in our region. Your voice is making a difference for thousands more living with MS. If you would like to learn more about 2014 priority issues and how you can get involved in advocacy opportunities, sign up for the action network today at nationalMSsociety.org/ msactivist.

MOVING TOWARD A WORLD FREE OF MS

LIVING WITH MS

Family Finds Inner Strength When MS Moves In by Brent D. Wistrom

hat old, goldish colored couch smelled a little musty. The cushions sagged. It probably absorbed a bowl of soup or two. But its arm rests were the mountains from which I jumped off of as a kid pretending to be He-Man, where I watched Timberwolves games with my dad and where I buried my face to cry during one of the Rocky movies. It was a safe place. My mom sat me down on that couch about 25 years ago and told me about MS. I was about 8 years old. She was about 38. She told me MS could make it hard for people to walk. It could make people tired. It could be unpredictable. It short-circuited people -- like a lamp that sometimes flickers because it has a worn power cord. MS thins the myelin that covers nerves -- like the plastic or rubber covers the conductive metals in an electrical cord, she explained. That’s MS. And she found out she had it. I don’t remember how I reacted -- just how I felt inside. Sad. Broken. Robbed. Angry. Helpless. It’s a long road to hopeful.

MSConnection • WINTER 2014

My mom recalls that I didn’t get it at first. But I learned over a few days. “You were just a little squirt,” she told me recently. She said she sat me down and asked me if I knew what MS is. I just said: “yep.” “Of course, I knew you didn’t have a clue,” she said. She tried to explain, and I got some details from a magazine or something that I got at school. Many people don’t understand MS until it affects someone near them. Even then it’s a bit mysterious. Prior to her diagnosis, she didn’t know what it was. Then she started reading. “You read the worse,” she said. “So it’s kinda like: ‘This is gonna happen to me?’” So many worst case possibilities. “There were many tears,” she said. “Sometimes knowledge is power. Sometimes you’re better off not knowing what could be.” Even though the disease had only slightly eroded my mom’s ability to walk back in the late 80s and early

90s, it was scary. She was -- and still is -- an All-Star mom. She brought me to T-ball games, swimming lessons, piano lessons, the clinic for allergy shots, to my buddies’ houses, to the park. She encouraged me to explore, create and learn. She loaded and unloaded bicycles so my pals and I could go on rides. She always attended my basketball games. It never ended. But I knew that endlessness was in jeopardy as some mysterious disease stripped the myelin around my mom’s nerves, short-circuiting some of her basic functions. Her leg strength and balance were most noticeable. By the time I was in 8th grade or so, my Mom couldn’t climb the bleachers in the gymnasiums where I played on the school basketball team. She worried people might think she was drinking -- she hardly ever has more than one. The steps are a little higher than normal house steps and there was no real railing for support. She seemed kind of embarrassed to go to church -- that might have been one of the only virtues to

me because I didn’t want to go anyway. Then she had to buy a cane, a very visual cue to the world that something is not right. Now she says it’s her fault we quit going to church. It wasn’t. I lost interest, too. Life, with all its unexpected beauties, sometimes just isn’t fair. Mom says she misses walks the most. My dad encourages her to join in a walk -- but in a wheelchair. “It just isn’t the same,” she said. Our family took a vacation to the Puget Sound along the northern coast of Washington. I was probably 14 or so. We ferried out to some beautiful islands, and we stopped at some resort on the shore of the sound. I don’t remember if my parents had planned it. But we ended up going ocean kayaking, and my mom had to stay back. My sister, dad and I saw a killer whale and bald eagles. It was beautiful drifting along the deep ocean waters among the wildlife. It’s tough to get a greater sense of nature. But my mom didn’t get to share in that. I was sad about that then. And the thought still makes me want to cry. But it’s also motivating. In cities I’ve visited across the United States, Europe and Mexico, I’ve made a point to walk as much as possible and almost always hike to each city’s highest point. I don’t ever want to take that freedom for granted. Those are very inward thoughts. I’m sure she’s fought more tears back than I have. But she hasn’t shown any regret, sadness or fear. I suppose it sounds a little cliche -- someone with a chronic disease showing no fear or not complaining. But think of how hard that would really be. Think what it really means. It’s hard not to complain about any pain or illness we end up with. We

want empathy. We talk about it because, usually, it’s a pain or illness that everyone is familiar with. We can share it. We know that nasty feeling of a sliver or a paper cut. We know the dull aches of the flu. We may even know what it’s like to break a bone or get knocked out. But MS? What do you tell people. They’ll never really understand … hopefully. My dad, sister and I all deal with this stuff in our own ways. My mom remembers that shortly after her diagnosis was confirmed, she told my dad that if he wanted to leave, now would be the time. It’s hard to even imagine for me looking back. My dad never seemed like that would have crossed his mind. But there’s no question there have been many frustrating moments. He’s had to take on cooking, cleaning and other things that a lot of men from his generation leave to their wives. Things take longer than he’d like, and some of the things he may want to do are difficult or almost impossible. When they travel to Texas to see my sister and I, they often can’t get out of hotels until almost noon because it takes my mom a long time to get ready. He got into motorcycling. My mom gave it a shot riding on the back, but it only lasted a year or so. Now he mostly rides alone. My mom couldn’t do a lot of the running around required to plan my sister’s wedding about three years ago. Then, at the wedding, my dad wanted to dance with her. So he pulled her on her dinner chair out to the dance floor. She just wanted him to stop. I saw it as a microcosm of the frustrations they have probably experienced dozens of times through the years. I’d do almost anything to kill that

disease and turn back the clock for them. At times, I’ve fantasized about a chance to fight MS face-to-face. I’m no fighter. Haven’t even thrown a real punch at a living thing. But there’s some sort of inner strength that ignites at even the thought of facing the thing that has stolen so many dances, walks and unknown experiences from my mom. But, as you probably know, MS won’t get in the ring. It’s up to exceptionally smart and dedicated doctors and scientists to find treatments … maybe even a cure. And it’s up to me to be a good son, help my mom and do what little I can to make sure there are plenty of resources to help make tough situations easier. My dad and I raised money for and rode in The Ride Across Minnesota (TRAM) back in about 1990. In years of traveling, reporting for newspapers and living in different cities, I’m elated that there are MS rides, MS walks and many other events that do the same thing -create some fun and raise a lot of awareness and money. I’ve probably tossed 1,000 or more pennies in wishing wells, ponds and streams, every single time making the same wish since I got up off that goldish musty couch with my mom. I’ll probably toss hundreds more. But I have a feeling that knocking on doors, making phone calls and riding my bike are more likely to make a difference for some other little dude and his mom.

Volunteer contributor Brent Wistrom is a journalist living in Austin, Texas.

MOVING TOWARD A WORLD FREE OF MS

LIVING WITH MS

New Partners in MS Care Introduced in Louisiana by Crystal Smith

artners in MS Care is a National MS Society program that recognizes and supports quality care for everyone affected by multiple sclerosis. The Society believes that people living with MS receive optimal care and support when strong collaborative relationships exist between health care professionals and the Society. Who are Partners in MS Care? Partners include health care professionals in the areas of neurology, mental health and rehabilitation, as well as sites that provide multi-disciplinary health care. Partners demonstrate knowledge and experience in MS care, and have a special interest in treating people living with multiple sclerosis. Our ultimate goal is to improve opportunities for people with MS to receive quality care and services. Plus, we want all parties to feel confident that the alliance we have developed will positively impact quality of care and access to care and services. We are thrilled to announce that Ochsner MS Clinic of New Orleans and LSU MS Clinic of New Orleans have been approved as Centers for Comprehensive Care. Partners in MS Care - Centers for Comprehensive

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Care are led by clinicians with demonstrated knowledge and experience in treating MS. They offer and coordinate a full array of medical, nursing, mental health, rehabilitation and social services, and have a strong collaborative relationship with the National MS Society. We are also thrilled to announce Mike Chafetz, Ph.D., ABPP and neuropsychologist has been approved as Partner in MS Care Mental Health. Partners in MS Care Mental Health professionals offer demonstrated knowledge in treating chronic illness and engage in communication with other health care providers treating the patient. These Partners work in strong collaboration with the Society. It’s been my pleasure working closely with these physicians and clinic staff throughout this process. People with MS are in some of the best hands in our state, region and country.

Crystal Smith is the Director of Programs and Services in the Society’s Louisiana office. She can be reached at crystal.smith@nmss.org.

Teen Pitches in to Help Grandmother with Creative MS Therapy Tools by April Brownlee

“I

still don’t know why. Medication interaction was causing fainting and I fainted.” And when she woke up, Vicki Mulkey was lying on her bathroom floor, her leg bent in such a way she knew there was most certainly a break somewhere. “It took me forever to get my leg down to a normal position so that I could climb up to the vanity and grab my cell phone,” said Vicki, who then called her daughter for help. And what they would soon learn was worse than any of them had expected. “The doctor said he hadn’t seen anything crushed that badly. He said he’d had men who had an ankle run over that wasn’t that bad,” she said. Vicki, who was diagnosed with multiple sclerosis nearly 15 years ago, was left to face a long road of recovery, with her daughter and grandson, Brady Albert, by her side. As Vicky transitioned to a nursing center for rehabilitation in her Texas Panhandle hometown of Pampa, 14-year-old Brady was there every step of the way. What no one realized was Brady was also taking in every detail of his grandmother’s care. That’s when Brady had an idea that could help Vicki. The wheels began to spin and Brady went to work. Soon, he was using common household objects to recreate tools used by the therapists to help Vicki. “He took a hula hoop, cut it in two, placed it on a board, put pegs on it and then put teething rings on the hula hoop. And then I can move those side to side. That cost less than $10 to build. That hula hoop thing, I was amazed at how much strength I gained from doing that in just one week at the nursing home. It was really and truly amazing. My mother and sister just couldn’t believe it,” said Vicki. Another tool uses clothes pins to increase pinch strength and coordination. The “professional” grade version retails for nearly $200 at online therapy

websites. But Brady was able to recreate nearly all of the equipment Vicki had been using in her recovery for a fraction of what they would cost to purchase. “I just thought with my grandpa’s help we could make some of this stuff. I wanted her home and to be able to get her strength back and not have to keep suffering through,” said Brady, who knew his grandmother wanted—needed—to be back in her own home. Soon, Vicki had amassed a collection of therapeutic tools, all handcrafted by Brady. “Everything he could think of, he’d say ‘Well, I can make that and you can do that at home,’” said Vicki. Three weeks later, Vicki returned to her home, but not without an army of support and a stockpile of tools to help her continue her recovery. “Today I’m doing pretty good. Back to living independently and slowly gaining mobility,” said Vicki. Some simple tools created by a 14-year-old have made a monumental difference in Vicki’s recovery, and she said it could work for others who are living with MS. “We have been so shocked over how much these things have helped me with MS. I’m regaining my strength. Regaining my balance. My tremors are not as bad. My doctor was shocked,” she said. And as Vicki focuses on her recovery, the resourceful and ambitious Brady is eyeing a future in occupational therapy. “That’s what I wanted to do all along, is help people. This is really easy and people cannot have to spend thousands of dollars on equipment,” said Brady.

April Brownlee is a Senior Development Manager with the Society’s Amarillo, Texas office. She can be reached at april.brownlee@nmss.org.

MOVING TOWARD A WORLD FREE OF MS

PROGRAMS

Free from Falls Program in OKC Planned for Spring 2014 by Kelly Jo Tullberg and Jennifer Philp

re you feeling more and more unstable on your feet, using a wall or furniture to help with balance? Does the thought of going down a steep flight of stairs make you especially nervous? Do you cancel plans because you are afraid you might fall in public? Blogger Julie Stachowiak, Ph.D., an epidemiologist who is also a person living with MS, understands the feeling. “A fall is public and obvious and humiliating. Falls separate us from ‘healthy people’ in a very literal way,” she said. “We are completely alone in that moment when we hit the floor.” However, research shows that individuals living with MS aren’t alone in experiencing falls. A 2011 survey among adults diagnosed with MS reported that 60 percent of individuals have fallen (LaRocca), with many of them experiencing multiple falls in the past six months. Besides the physical and financial impact, falls can lead to a loss of independence, loss of confidence, and social isolation brought on by both physical limitations and fear of future falling. There are several reasons why individuals living with MS experience falls. Dizziness or vertigo is a common MS symptom, often related to slow sensory input, inner ear problems or brainstem damage. A loss of motor skills called ataxia can make it difficult to walk unless you can visually monitor your walking movements. Drop foot, another common symptom, describes an inability to keep the toes of the foot from dropping, which can cause someone impacted to easily stumble on flat surfaces or trip when stepping up a curb or stair. Neurological damage can affect how the brain perceives the motion and position of the body, affecting how quickly the brain can react to an obstacle. In an answer to these issues, the National MS Society developed Free From Falls, a comprehensive fall prevention program for individuals living with MS. In the South Central Region, Oklahoma was selected as a test market in 2012 and held the program again in 2013

MSConnection • WINTER 2014

at the OMRF MS Center of Excellence. In the eight-week program, participants: • learned about what can contribute to falls, • identified strategies to use to prevent falls in the home and community, • engaged in and developed a fitness plan to improve balance, endurance, strength and mobility to reduce fall risk, and • increased confidence to avoid falls and manage falls, if they occur. The program was held in a fun, supportive group atmosphere, with an expert instructor in rehabilitation, health and wellness. Results from the pilot program demonstrated strong evidence of program success, including marked improvements in gait ability, balance and confidence. Additionally, participants reported: • fewer falls and a decrease in activity curtailment due to fear of falling; • 65 percent are now engaged in regular exercise, • 44 percent made home modifications, and • 39 percent are using a mobility devise more regularly or effectively. The Free from Falls Program will be held again in Oklahoma City in Spring 2014. For information, please contact Jennifer Philp, jennifer.philp@nmss.org, or 800344-4867, option 1. If you are concerned about falls and do not have a program near you, the Society suggests talking with a physical therapist. They can recommend exercises or assistive devises to improve your mobility and confidence. You can also contact an MS Navigator at 800-344-4867, option 1, or visit nationalMSsociety.org to learn about books and online resources for balance and mobility. You are not alone. Visit MSConnection.org to chat with others who experience falls due to MS.

PROGRAMS

Three Local Programs and Services Volunteers Named to National Hall of Fame T

hree South Central Programs and Services volunteers – Dr. Victor M. Rivera, Dr. Bridget Bagert and Julie Cawthron – were selected for the Society’s National Volunteer Hall of Fame. The announcement came from Cyndi Zagieboylo, the National MS Society’s Society’s President and CEO. This prestigious honor was celebrated at the Society’s National Leadership Conference in November.

Dr. Victor M. Rivera

Member of the Houston Leadership Council 2013 Lifetime Achievement Award

The Lifetime Achievement Award is presented to volunteers with 35 or more years of service who have steadfastly given of themselves in the movement toward a world free of multiple sclerosis. Dr. Rivera has dedicated his career to the outstanding care of his patients and their families. His professional accomplishments include more than 150 papers and lectures at more than 150 international events. His exceptional leadership has been continuous since the establishment of the Society’s presence in Houston in 1972.

Dr. Bridget Bagert

Member of the Louisiana Leadership Council 2013 Volunteer Hall of Fame: Health Professionals Category

been an invaluable and trusted advisor, health care practitioner and friend. She is extremely generous with her time and expertise as a member of the South Central Board of Trustees and Clinical Advisory Committee. She is a sought-after speaker for local programs and lends her voice to Louisiana MS Activists at both the state and federal levels. She gracefully balances her leadership in the MS movement while leading the Ochsner Multiple Sclerosis Center in New Orleans.

Julie Cawthron

Member of the Arkansas Leadership Council 2013 Volunteer Hall of Fame: Advocacy

For more than 15 years, the MS movement has benefitted from Julie’s commitment and dedication. It is in MS activism that Julie has particularly shined and made a difference in countless lives of Arkansans affected by multiple sclerosis. In 2005, she methodically and patiently began organizing MS activists in her state. What began as information tables at the Capitol evolved to the first State Public Policy Conference in 2011; it has continued as an annual event with record numbers of Arkansas MS activists participating and engaging legislators. Under her leadership, Arkansas MS activists passed their first piece of legislation this year.

Since the beginning of her partnership with the Society and the MS movement in 2006, Dr. Bagert has

MOVING TOWARD A WORLD FREE OF MS

GET INVOLVED

Does Your Home Meet Your Needs? Rehabilitation Counselor Discusses Housing for People with MS Affordable, accessible housing is a crucial need for many people who have advanced MS. For Malachy Bishop, Ph.D., of the University of Kentucky, the issue became personal once his father’s mobility was affected by a neurological condition similar to multiple sclerosis. Dr. Bishop had been funded by the National MS Society’s Health Care Delivery and Policy Research Program to study housing needs. How did you come to be interested in doing research specifically about people with MS? Dr. Bishop: My professional background is in rehabilitation psychology. I have always been very interested in the ways that people adapt and learn to live and thrive with chronic neurological conditions. I had been researching aspects of living with MS for several years, but after seeing the effect that my father’s increasingly limited mobility had on both my parents, understanding and addressing the specialized housing needs of people with MS became very personally important. Although housing was a new research area for me, I was fortunate to work with my coinvestigator, Dr. Kathy Sheppard-

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Jones, who is a leading researcher in this area. When you do a survey like this, how do you capture the variety of experiences of people with MS? Dr. Bishop: First, we actively involved people with MS in the design of the survey. After we developed a draft survey, with the help of housing consultants and MS experts, we traveled around the country to meet with focus groups of diverse people with MS and health care professionals. We would discuss their perspectives, review the survey together and make sure we were addressing all the issues that were important to them. We revised the survey many

times based on their feedback. Second, we made sure people could complete the survey in different ways, including Webbased surveys, mail-in surveys and telephone interview. This helped us get information from people in different age groups. Finally, we made sure we surveyed people in every state, so we could explore different regional experiences. What were some of the more striking findings in the results? Dr. Bishop: Some of the most striking findings were, first, the large number of Americans with MS whose independence is affected by limited mobility. Seven out of 10 people reported some degree

of mobility limitation that affected their ability to function in their homes and participate in their communities. Also striking was the number of people who live in inaccessible homes. About one in five Americans with MS said they are limited in their home because it is not accessible. Another major issue was that, although there are many programs and resources available to help people afford making their homes safer and more accessible, most people were unaware of them. This is critical, because one in four participants said that their financial situation has prevented them from making needed modifications. Of particular note was the high number of people who said that they need, but do not have, safety features such as grab bars in the bathroom (15.2 percent), or such basic necessities as an accessible bathroom, an accessible kitchen or an accessible entrance to their home

(about 10 percent each). Finally, we found that regardless of the severity of the MS, people whose residence was fully accessible reported a higher quality of life and were more confident that they would be able to live independently. When do you think people with MS should start thinking about housing? Dr. Bishop: We recommend that housing accessibility be a consideration in any long-term housing decision for persons with MS of any age, but this is especially true for people over the age of 50. People over 50 were significantly more likely to report having a mobility limitation, to be limited in their residence and to say they are not confident that they will be able to continue to live independently in their residence in the near future.

Do health care providers have a role in bringing up the topic? Dr. Bishop: Safe and accessible housing is clearing an important health issue for people with MS, but previous research has shown that medical and rehabilitation professionals rarely bring it up with their patients, and generally donâ&#x20AC;&#x2122;t know much about it. Health care providers should absolutely have a more active role in evaluating residential accessibility and safety, and in providing specialized housing resources and information.

â&#x20AC;&#x153;Affordable Accessible Housing: A Guide for People with MSâ&#x20AC;? is a practical tool to help families living with MS evaluate their housing needs and better understand the range of available options. For a copy of this free guide, contact a National MS Society information specialist by calling 1-800-3444867 (press 1 when asked).

MOVING TOWARD A WORLD FREE OF MS

Photo by Angela Talley

COVER STORY

MSConnection • WINTER 2014

COUNTRY SINGER

JULIE S T R E B O R PLACE fINDS HER

INTHE SUN

Being diagnosed with multiple sclerosis when she was 27 was the first in a series of challenges that country music star Julie Roberts has faced – and risen above – in recent years.

ulie Roberts first stepped into the national spotlight with her selftitled debut album in 2004. Fueled by the top 20 country smash “Break Down Here,” her first record earned industry gold for sales in excess of 500,000. The New York Times praised her debut as “an album full of addictive and complicated love songs” and named “Break Down Here” as “one of the year’s best country ballads.” A wide range of national TV appearances followed, including five on ABC’s “Good Morning America,” three memorable performances on “The Tonight Show with Jay Leno” and the first focus of CMT’s “In the Moment,” documenting how she

rose from Universal Music Group Nashville assistant to a breakout star in her own right. Multiple honors included nominations from the Country Music Association, the Academy of Country Music and the CMT Awards. Roberts credits the lifelong influence of indelible women such as Patsy Cline and Barbara Mandrell, as well as her adored mother. “When I write, I’m kind of tapping into the music I listened to growing up,” Roberts said, “the traditional country music Mama always listened to. I’m just drawn to that sound and that kind of honesty.” While working on the release of

MOVING TOWARD A WORLD FREE OF MS

her second album, “Men and Mascara” in 2006, however, the singer lost the backing of her record label. Less than four years later, Roberts watched the 2010 Tennessee floods destroy her home and was injured leaping from the roof of her home into a rescue boat. However, none of this could keep Roberts down – or away from her fans. She stayed close to them through social media an d created her own label, Ain’t Skeerd, to release her third album, “Alive,” in 2011. In the title song, she proudly proclaimed:

I fall sometimes, I crawl sometimes, Lose it all sometimes, It makes me stronger.

The years of meeting and rising to life’s challenges have paid off: this fall, Roberts released her fourth, careerdefining album, “Good Wine and Bad Decisions,” on the legendary Sun Records label. Sun Records has been home to music icons and pioneers such as Johnny Cash, Jerry Lee Lewis, Roy Orbison and Elvis Presley. This marks the first new album on Sun Records in decades. “I feel like I’ve finally found a place to be, where my music really fits” said Roberts. “There’s some pressure to live up to the Sun Records tradition, but I keep reminding myself to do what I do, to do the best that I can do. I’m so thankful that Photos (including album cover) by Angela Talley. Album cover design by Chase Gregory.

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they believe in what I do enough to let me do it.” With her newest release, the gifted songstress has given her substantial all to craft an album that stands simultaneously as her most grounded and most adventurous, a special collection of songs powered by her authenticity, resourcefulness and passion. Those qualities have also led the talented recording artist to share her experiences about living with multiple sclerosis. Roberts has helped build awareness of the disease at a number of National MS Society-sponsored events. She also donated a portion of sales from her latest album to the Society to support research and programs to help people living with multiple sclerosis. She’s now gearing up for a full-scale return to the road, with plans for nearly non-stop touring well into the indefinite future. Despite her challenges with MS, Roberts is more than prepared to tackle whatever challenges the endless highway might offer. “I want people to know that I can still do whatever I want,” she said. “It’d be way more stressful for me to not be doing what I love. I would worry more for my health sitting home than playing shows every night. That’s where I love to be. “God gave me this opportunity that I’ve asked for,” Roberts said, “so I’m putting everything I’ve got into it – everything. Every bit of energy, every bit of emotion. I’m just going for it. I’m doing what I love and I’m praying that other people love it, too.”

Connect with Julie Roberts and get her current tour schedule at JulieRoberts.com. The photo on the cover of this issue of the MSConnection is by Angela Talley.

Photo by Angela Talley

MOVING TOWARD A WORLD FREE OF MS

AWA R E N E S S

Young Artists Chalk It Up for MS Movement T

his fall, 71 art students at Texas’ Marshall Academy of Fine Arts participated in the 4th annual “Chalk the Walk for MS” competition. Held in celebration of the Walk MS: Houston Series – four fall fundraising walks in The Woodlands, Sugar Land, Houston and Kemah – the visual competition showcased the theme “Every Connection Counts,” as interpreted by the academy’s 6th, 7th and 8th graders. Students were divided into 14 teams and illustrated original artwork on sidewalks outside Marshall Academy.

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For the first time, students decided to tackle more than just the artwork: they also raised money for Walk MS and the National MS Society. They saved their extra lunch money, brought in spare change, and asked parents and family friends for any amount so they could raise money to help the Society’s efforts. In two weeks, the students raised an impressive $1,000 and presented a check to the National MS Society. Team All Stars took the grand prize, which was a $150 gift certificate from Texas Art Supply.

MOVING TOWARD A WORLD FREE OF MS

RESEARCH

Neuroscientist Receives First Barancik Prize for Innovation in MS Research USCF researcher Jonah Chan wins for creating cutting-edge technologies to tackle the challenge of brain repair for people with MS

euroscientist Jonah Chan, Ph.D., of the University of California at San Francisco is the first recipient of a new international prize that recognizes innovation and progress in multiple sclerosis research. Dr. Chan, Associate Professor of Neurology and holder of the Debbie and Andy Rachleff Endowed Chair in Neurology, was recently presented with the 2013 Barancik Prize for Innovation in Research award and $100,000 cash prize. The honor recognizes his pioneering work that applies new technologies to the search for ways to stimulate brain repair in persons living with MS. The Barancik Prize is made possible by the generosity of the Charles and Margery Barancik SO Foundation, and is administered through the National MS Society. Among the accomplishments for which he was recognized, Dr. Chan invented new nanofiber and micropillar technologies to quickly identify compounds that stimulate regrowth of the myelin nerve casing, which is damaged by MS. Dr. Chan is now testing thousands of compounds to develop a pipeline of new and known agents that may promote remyelination and repair. This strategy could shave years off the development of important new MS treatments. Early in his career, Dr. Chan’s work broke new ground by identifying factors that both promote and inhibit myelin formation.

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Dr. Chan is also an accomplished mentor and has inspired young people toward careers in neuroscience and MS research. “We believe in the power and influence that one creative and driven individual can have on the course of future events in creating a world free of MS,” said Charles and Margery Barancik. For this inaugural prize, the National MS Society received 27 nominations. Five finalists presented their work to a selection committee comprised of leading MS advocates and research experts. “Selecting the first award winner out of five incredibly inventive and accomplished MS researchers was a real challenge,” said selection committee member Monia Joblin. “It is heartening to see the amazing progress being made by scientists on behalf of people who have MS.” On receiving the 2013 award, Dr, Chan said, “The Barancik Prize is a great honor, especially as I consider the other nominees to be such extraordinary scientists and clinicians. This prize acknowledges not only my efforts, but also the efforts of my colleagues and the talented students and post-docs that I have had the pleasure to work with. This award validates our work, encourages us to be more daring in our science and is a reminder that it is a privilege to contribute to something greater than ourselves.”

RESEARCH

Society Invests $7 Million to Support Nervous System Repair “T

he idea of rebuilding the nervous system and protecting it from ongoing MS damage was just a dream a few years ago,” said Dr. Timothy Coetzee, the National Multiple Sclerosis Society’s Chief Research Officer. Thanks to efforts by the research community and focused investments by the Society, though, “we can see a future where people with MS will have treatments that could restore what’s been lost,” said Dr. Coetzee. To that goal, the National MS Society recently committed $7 million to support 15 new research projects focusing on innovative approaches to repair the coating of myelin that protects nerve fibers and which is destroyed by the MS disease process. The Society’s new commitments to academic researchers are: • A $587,310 research grant to University of North Carolina scientists Glenn Matsushima, Ph.D., to look for therapies that may reduce or halt MS damage to the cells that make myelin. • A $499,500 research grant to New York University neuroscientist James Salzer, M.D., Ph.D., to identify chemical signals that can stimulate stem cells in the brain to boost the numbers of myelin-making cells. These chemical signals can also ramp up the body’s natural ability to repair damaged myelin. • A $554,974 research grant to University at Buffalo SUNY scientist Fraser Sim, Ph.D., to investigate the importance of a gene called the M3 receptor to myelin repair. When activated, this gene stops the ability of immature cells to turn into mature myelin-making cells. Dr. Sim’s team is testing whether an FDA-approved therapy that blocks M3 can increase myelin synthesis. The Society’s new commercial investments in drug development are:

• $540,000 to CuroNZ, an Auckland biotechnology company, to support preclinical studies to develop its NRP2945 candidate as a potential therapy to protect the nervous system from MS damage. CuroNZ will collaborate with leading research institutions such as the University of Auckland and Monash University in Melbourne. • $225,000 to ENDECE Neural, a private biotech firm, to advance preclinical development of NDC-1308, a compound that focuses on repairing the protective myelin covering nerve fibers in the brain and spinal cord. Previous NDC-1308 studies with mice demonstrated an ability to significantly repair the myelin sheath. • $499,631 to pharmaceutical company Karo Bio AB for preclinical development of ERbeta agonists, a treatment with the potential to slow disease progression by protecting neurons and restoring myelin. • $500,000 to Karyopharm Therapeutics to test Selective Inhibitors of Nuclear Export (SINE) compounds to protect the nervous system and stop MS progression. These compounds inhibit release of inflammatory proteins and raise concentrations of neuroprotective fibers. Momentum in the challenging field of myelin repair has been building since the Society’s 2005 global initiative funded four collaborative teams focusing on nervous system protection and repair. Finding ways to restore and protect the damaged nervous system is a key priority of the Society’s No Opportunity Wasted (NOW) research campaign. These new investments expand the Society’s comprehensive portfolio to 88 current research projects that focus on repairing the nervous system in persons with multiple sclerosis, with multi-year commitments totaling $37.8 million.

MOVING TOWARD A WORLD FREE OF MS

RESEARCH

Clinical Trial Participants Advance New Drug Therapies C

linical trials help to determine if a drug is safe and effective for people with multiple sclerosis. People with MS who are willing to volunteer in these studies make it possible for all of us to look forward to new and better therapies. Many factors are involved in making sure a study is conducted properly and results are valid. The U.S. Food and Drug Administration (FDA) requires therapies to undergo three phases of clinical trials before they can be approved to treat people with MS: • Phase I – The first step is to determine safety. In a small number of volunteers, researchers determine how the human body reacts to the therapy. • Phase II – If the therapy proves to be safe, studies begin to determine the effectiveness of the drug in people with MS. These studies may last several months or several years, and involve larger numbers of people. The study is “controlled,” meaning the drug is compared with the standard treatment or an inactive placebo. • Phase III – If an MS drug shows effectiveness, an even larger study is conducted in hundreds of people; this helps gain a better understanding of the drug’s effectiveness and possible side effects. These multicenter studies can span several years and several countries.

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Following FDA approval, post-marketing studies (phase IV) might be conducted to assess long-term safety and effectiveness. As of publication, the following are current studies of interest to South Central U.S. residents affected by MS. These are a sample of more than 300 ongoing or planned studies that appear online at clinicaltrials.gov. T-Cell Therapy Study Recruiting Persons with Secondary-Progressive MS Texas researchers in Houston, Round Rock and San Antonio are seeking people with secondary-progressive MS for a phase II clinical trial of Tcelna, a personalized T-cell therapy using a person’s own immune cells. The placebo-controlled study – also called the Abili-T study – is sponsored by Opexa Therapeutics Inc. of The Woodlands, Texas. Tcelna aims to restore function to the immune system, which, during MS, attacks nerveinsulating myelin in the brain and spinal cord. Tcelna is tailored to each person’s immune response to myelin and has been shown to reduce the number and functional activity of subsets of myelin-reactive T cells. The FDA has designated Tcelna as a “Fast Track Product” for the treatment of secondary-progressive MS. The Fast Track designation may expedite its future review by the FDA after the company submits results of future phase III trials.

Participants for this clinical trial should be aged 18 to 60 and diagnosed with secondary-progressive multiple sclerosis. A blood test that confirms the presence of myelin-reactive T-cells must be performed at the first screening visit. To learn more about the enrollment criteria for this study, contact Maryann Murray at 281719-3405 or mmurray@opexatherapeutics.com. Estriol Research Aims to Improve Cognition New Mexico investigators are recruiting women aged 18 – 50 with relapsing-remitting, secondary-progressive or primary-progressive MS for a year-long study in which the sex hormone estriol will be compared with inactive placebo for effects on cognitive function. To learn more, contact Lori Bachert at the University of New Mexico at 505-272-8905 or lbachert@salud. unm.edu. New Genetic/Environmental Study is Relatively Seeking Researchers from the Harvard Medical School, Brigham and Women’s Hospital, and Partners Multiple Sclerosis Center are recruiting 5,000 subjects who have at least one first-degree relative with MS. The goal of the study is to identify the genetic, environmental and

immune profiles that may increase a person’s risk of developing MS. A first-degree relative could be a parent, sibling or child of a person with MS. The study is limited to those between 18 and 50 years old. There is no cost to take part in the study. Participants can reside anywhere in the United States because travel is not required to enroll. Each participant will be asked to donate a saliva sample for DNA analysis and complete a questionnaire about neurologic history, family history and potential environmental exposures. Based on answers to this questionnaire and the DNA analysis, the research team will collect blood samples and MRI scans from a subset of volunteers who choose to be included in that segment of the study. Each participant is assigned a unique identification number to ensure complete confidentiality. For more information, contact Research Coordinator Alina von Korff at 617-264-5980 or bwhmsstudy@ partners.org.

MOVING TOWARD A WORLD FREE OF MS

RESEARCH

World’s Largest MS Science Meeting Reports on Progress and Challenges The 2013 European Committee for Treatment and Research in MS (ECTRIMS) meeting hosted nearly 8,000 participants in Denmark in midOctober. Attendees from around the world gathered to share ideas and communicate new findings to stimulate faster progress in multiple sclerosis research. The following is a summary of a few of the 1,000 presentations on cutting-edge research to address every aspect of the challenge to stop MS in its tracks, restore function and end MS forever. Examining disease risk when a relative has MS Dr. Helga Westerlind of the Karolinska Institute in Stockholm reported on a study by team taking advantage of MS patient registries in Sweden, one of which dates back to the 1800s. They took a fresh look at how much having a family member with MS increases a person’s chances of getting the disease. The team focused on identical and fraternal twins. Comparing the risks of these two groups is important because identical twins are thought to share the same genes whereas fraternal twins do not. They discovered that the risk of an identical twin getting MS if the other twin has the disease was lower than in prior reports, but still much higher than in fraternal twins. This study suggests that the role of genes may be more complicated than previously suspected. Obesity, alcohol consumption and other factors increase odds of MS at earlier ages The incomplete picture of risk genes is driving

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more studies looking at their interaction with a person’s lifestyle and environment. For example, Danish researchers Dr. A.B. Oturai and colleagues from Copenhagen University examined a group of potential risk factors, including known MS susceptibility genes, obesity in early adulthood, previous mononucleosis and high teenage alcohol consumption. They found that each of these factors contributed to lowering the age at which an individual was diagnosed with MS. A related study suggested that preventing teen obesity in people with MS susceptibility genes may reduce their risk of developing multiple sclerosis. Smoking raises – and quitting reverses -- MS risk In a large population study, Dr. A.K. Hedstrom and associates from the Karolinska Institute confirmed that cigarette smoking increased the risk for developing MS at any age; the MS risk climbed with the amount smoked. They also found that quitting smoking completely reversed the risk back to normal within a decade. The

same team reported that smoking could increase a person’s risk of developing the kind of antibodies in the blood – called neutralizing antibodies – that can block the ability of interferon beta to reduce MS disease activity. MS has a flavor for salt Recent studies have pointed to dietary salt as a possible risk factor for developing MS or for making mice with MS-like disease worse. New evidence presented by Dr. M.F. Farez and colleagues at the Institutes for Neurological Research in Buenos Aires and in Boston suggests that high salt intake may also increase MS exacerbation rates and MRI-detected disease activity in people with the disease. Call it a gut feeling … Another emerging area of research is the gut microbiome – colonies of trillions of mostly-beneficial bacteria in our intestinal tracts. The immune activity that occurs in the gut and which is related to the immune system may help dictate other aspects of health, including the activity of a person’s MS. Dr. O. Borbye Pedersen of the University of Copenhagen made it clear that this is a very promising field of study. If researchers can decipher the influence of the gut microbiome, there is a potential of altering it to treat or even prevent MS. Early treatment helps prevent future function loss Dr. Giancarlo Comi of the Universita Vita-Salute San Raffaele in Milan discussed increasing evidence that treatment with disease-modifying therapies early in the course of MS can help prevent future loss of function. He noted that as the ability of physicians to identify MS in its earliest stages improves, there may be opportunities to treat the disease earlier and improve outcomes for people with MS. Results reported from Aubagio drug study First results were reported from the international phase III trial of oral teriflunomide (Aubagio) in people with clinically isolated syndrome (CIS). CIS is a situation where a person experiences a first neurological event

that often, but not always, progresses to definite MS. The study found that daily (14 mg) Aubagio reduced the risk of converting from CIS to definite MS by 42.6 percent. Further, it reduced the risk of experiencing a new relapse or new lesion seen on MRI by about 35 percent. The most common adverse events were elevated liver enzymes, headaches, hair thinning, diarrhea and paresthesia (burning or prickling sensation). Investigating the connection between viruses and MS Infectious disease specialist Dr. Julian Gold of Sydney, Australia presented an overview of research on whether viral infections trigger or cause MS, the conflicting results, and the fact that it is technically difficult to isolate a specific virus in the brain to attribute as a cause. He also cited research suggesting that the genetic material from human endogenous retroviruses makes up a portion of the entire complement of human genes and could play a role in triggering immune attacks. Dr. Gold looked at health registries to find that few people who are treated with anti-retrovirus therapy to treat HIV have been reported to have MS. Based on these ideas, a group has launched a small pilot trial called INSPIRE to see whether brief treatment with an anti-viral therapy can alter brain MRI in people with relapsing MS. Grading vitamin D’s effects Several new clinical trials are getting under way to test whether increasing an individual’s vitamin D levels can delay the development of multiple sclerosis. The National MS Society is supporting a trial to see whether vitamin D supplements can reduce MS activity in people already diagnosed. Mayo’s myelin repair trials Investigators from the Mayo Clinic are developing an agent called rHIgM22 that has been shown to promote extensive remyelination in several different animal models of MS. Therapy via transplanted cells Another strategy to repair myelin is to introduce

MOVING TOWARD A WORLD FREE OF MS

new repair cells into the system via transplantation. Drs. C. Laterza, Gianvito Martino and colleagues from San Raffaele Scientific Institute in Milan used mouse skin stem cells and forced them to become myelin-making cells. After these cells were infused into the spinal cord, they promoted recovery in mice with the MS-like disease EAE. This type of research gives hope that this strategy may eventually help restore lost function. Differences in MS lesions Dr. Bruce Tapp of the Cleveland Clinic showed that new MS lesions undergo natural repair of nerveinsulating myelin much better than older (i.e., chronic) ones. Further, Dr. Tapp found that cells capable of making new myelin exist in chronic lesions, but they are stalled. His team has discovered MS lesions that straddle two different parts of the brain – the white matter and the gray matter. The research team found that chronic lesions in the white matter – which contains a great deal of myelin and its lesions can be seen on standard MRI scans – do not remyelinate. However, chronic lesions in the brain’s gray matter – which has less myelin and lesions cannot be seen on MRIs – show robust remyelination, even in persons living with MS into their 70s. Dr. Ranjan Dutta and others on the team are comparing differences on a molecular level in the two regions to figure out how to make the brain’s white matter repair like the gray matter. Focusing on progressive MS During a session devoted to progressive MS, Dr. Robert Fox of the Cleveland Clinic discussed several key initiatives currently under way to address challenges presented by these forms of the disease. One focus was the Progressive MS Alliance, an international effort to connect resources and experts around the world to find answers and develop the solutions to end progressive MS. Some 85 separate presentations at ECTRIMS specifically referenced progressive MS; many others focused on issues that have direct bearing on this form of multiple sclerosis, suggesting that more attention is being paid to understanding, stopping and reversing progression.

MSConnection • WINTER 2014

Eyes provide windows into racial differences of MS progression Dr. D. Kimbrough and colleagues from across the United States investigated eye health in 698 people with multiple sclerosis and 137 participants without MS. At the outset of the study, among healthy participants, the nerve fiber layer in the back of the eye – known as the retinal fiber layer – tended to be thicker in AfricanAmericans than in Caucasians, but this difference was not seen in people of either race who has MS. Later, ranging from six months to nearly four years, the retinal fiber layer of African-Americans with MS had thinned much more than that of Caucasians; there was also more vision loss among African-Americans with MS who had a history of optic neuritis compared to Caucasians. This adds to previous studies suggesting that multiple sclerosis may be more aggressive in African-Americans. Benefits of exercise Mounting evidence suggests that exercise and rehabilitation can help many levels of function and quality of life for persons with MS. The annual Conference of Rehabilitation in MS was held jointly with ECTRIMS, enabling researchers to share creative strategies to study and maximize benefits of exercise. Dr. Ulrik Dalgas of Aarhus University in Denmark reminded the audience that, for many years, people with MS were advised against exercising because it seemed to make fatigue and other symptoms worse. Thanks to research, we now know that this worsening is usually temporary and outweighed by the benefits. There have been hints that exercise can fight depression and improve cognition, and possibly even modify disease activity. Further study is required into the extent of these benefits and the optimal exercise for achieving them. Incorporating physical activity into daily life National MS Society-funded researcher Dr. Robert Motl of the University of Illinois at Urbana-Champaign discussed the fact that fewer than 20 percent of persons with MS engage in sufficient physical activity. In addition, more than half of adults drop out of formal

exercise programs after only three months. Dr. Motl noted studies suggesting that intermittent exercise can accumulate during the day to have the same effect as continuous exercise. New approach for those who have difficulty exercising A novel approach called kaatsu resistance training is based on the idea that people who are already weak may have a hard time exercising with enough vigor to see positive changes in strength or growth of muscle mass. Dr. Y. Learmonth and others at the University of Illinois at Urbana-Champaign presented preliminary results of kaatsu training, in which blood flow to the muscles is partially blocked by a device similar to a blood pressure cuff, while performing lower limb exercises such as leg presses and curls. This may stimulate extra resistance so that the exerciser needs to use less force to achieve gains. Eight people did these exercises three times a week for six weeks; for the study, four persons used the kaatsu cuff and four did not. This was a small study, but researchers found it to be safe; they also found signs that those using the kaatsu cuff showed more improved strength than the control group that didn’t use the cuff. The National MS Society is currently funding a small pilot study to further explore the potential of kaatsu resistance training. Iron deposits in brain lesions Previous studies have shown that iron is deposited in some MS brain lesions, but its source and role have been unclear. Iron is critical for normal cell function. Iron is released when cells are damaged. Drs. S. Hametner and Hans Lassmann of the Medical University of Vienna, along with research team members in Austria and Germany, reported that iron is released from the myelinproducing cells that are dying as a consequence of MS immune attacks. This released iron is picked up by other brain cells, which may cause those cells to degenerate through a process known as oxidative damage. This supports the idea that damage to myelin-making cells

during the first waves of MS attacks release substances – including iron – that may trigger the more progressive and neurodegenerative phase of MS. Doctors uncover toxic nature of cells Recent research points to a previously unsuspected role of immune B cells in MS disease activity; clinical trials of treatments that target B cells are under way. Drs. Robert Lisak from Wayne State University in Detroit, Amit Bar-Or from the Montreal Neurological Institute and team wanted to see whether these cells release substances that are harmful to nerve cells grown in lab dishes. They took B cells from the blood of seven people with relapsing MS and eight people without MS; the researchers let the B cells grow in lab dishes, collected the liquid they grew in, diluted it and added it to neurons. They found that the B cell products from people with multiple sclerosis were significantly more toxic to nerve cells than that from controls, adding evidence to the proposition that B cells may be important players in nervous system damage in MS. Plugging into malfunctions of the body’s cellular energy makers There is also increasing evidence that malfunctions of mitochondria – the tiny energy producers of cells – contribute to nervous system damage in MS. Dr. Martin Kerschensteiner of Ludwig-Maxilians University in Munich, Germany presented amazing documentation showing the movement, or “trafficking,” of substances and mitochondria inside living nerve cells. He also showed how such movement can be blocked. Using this technology, his research team is tracing how nerve cells are damaged in MS; so far, the team has uncovered signs that the nerves will either recover fully or degenerate for certain damage. This work provides a basis for a more targeted approach to strategies for preventing the nerve degeneration that underlies progressive multiple sclerosis.

MOVING TOWARD A WORLD FREE OF MS

RESEARCH

Team Taps Into New Evidence of Early Nerve Cell Damage A

n international team of investigators has found evidence suggesting that early in the course of MS, nerve cells – and not just their myelin insulation – show signs of damage by leaving traces of nerve cell proteins in the spinal fluid. Led by Steven Schutzer, M.D., at Rutgers University New Jersey Medical School, the researchers sought to better understand which brain regions are initially targeted in multiple sclerosis. Understanding initial events in the development of MS may suggest ways to develop more effective therapies. Because MS involves immune system attacks to the brain and spinal cord, nerve fibers and nerve cells may also be damaged. “White matter” in the brain consists of nerve fibers – which transmit messages to, from and throughout the brain – and myelin, the fatty substance surrounding and protecting nerve fibers that is a major target of the immune system in MS. “Gray matter” in the brain includes the nerve cells and several associated structures; recent research suggests that the gray matter is also a target of MS attacks. Dr. Schutzer and his team looked at samples of spinal fluid, the liquid that surrounds the brain and spinal cord, and that is obtained when someone undergoes a spinal

tap. They compared spinal fluid from six people without MS, 12 people with definite relapsing-remitting MS and nine people with clinically isolated syndrome (CIS), which is a first neurological attack that often develops into MS. The research team analyzed the proteins in the spinal fluid samples, looking for differences among the three groups. White matter proteins were similar between people with CIS and those with established relapsing MS; however, those with CIS showed evidence of gray matter proteins that may indicate debris from attacks to nerve cells. The researchers concluded that finding these gray matter components in the spinal fluid of firstattack patients supports the idea that gray matter regions of the brain may be targeted early in the course of MS. Since this preliminary study involved small numbers of patient samples, further research is needed into these early-attack signs. The National MS Society is supporting research aimed at understanding early events and pathology of multiple sclerosis, such as high-powered imaging studies exploring MS lesions in the brain’s gray matter, and tests to identify spinal fluid and blood markers that may serve as early indicators of disease activity. If such research is a success, it would speed the search for treatments to stop MS progression.

The researchers concluded that finding these gray matter components in the spinal fluid of first-attack patients supports the idea that gray matter regions of the brain may be targeted early in the course of MS.

MSConnection • WINTER 2014

RESEARCH

Another Reason to Quit:

Smoking May Reduce MS Therapy Benefits A

void smoking because it can trigger MS and worsen the course of the disease. That is the finding of a recent study that sought to clear the air on the impact of smoking on persons with MS. According to researchers in Sweden, the study found that current smokers are significantly more likely to develop antibodies associated with immunity to interferon beta treatment for MS than non-smokers. These neutralizing antibodies may be linked to poor response to MS therapy. While MS is neither contagious nor directly inherited, scientists have identified risk factors that help determine whether someone will develop multiple sclerosis. These factors include genes, gender, age, geography, ethnic background and cigarette smoking. Some studies have also hinted that smoking contributes to disease worsening and that MS disability progressed more quickly in smokers.

Persons with MS taking interferon beta medications may develop immunity to the treatment, as shown by neutralizing antibodies in their blood. These may be associated with incomplete response to therapy. Investigators reviewed the treatment records, antibody status and smoking habits of 695 people with MS. Compared with non-smokers, those who were current smokers showed a greater risk of developing antibodies to interferon beta-1a. The studyâ&#x20AC;&#x2122;s authors commented that these results may show that the lungs react to immune system activity and may alter the interferon molecule. Resources to help quit smoking are available through the National Institutes of Health. Visit smokefree.gov or call 1-800-QUIT-NOW (1-800-784-8669).

MOVING TOWARD A WORLD FREE OF MS

RESEARCH

Global Group IDs 48 New MS Risk Genes

o end MS, we must understand its genetic roots. Now, in the largest research study of its kind, a global collaboration of scientists has identified 48 new genetic variants associated with MS. This brings the total number of genetic variants that may influence susceptibility to multiple sclerosis to 110. These gene findings promise to better define the complex biological pathways that lead to the development of MS. Ultimately, the latest findings may

pinpoint the way to prevent the disease and enhance our ability to design better treatments. The study involved nearly 30,000 people with MS and more than 50,000 controls without MS. It was funded by more than 40 agencies and foundations – including the National MS Society – and was conducted by nearly 200 investigators of the International MS Genetics Consortium (IMSGC), representing 13 countries.

New Intradermal Drug Tests Reduce Disease Activity

n a phase I study involving people with relapsing MS, an experimental treatment greatly reduced disease activity on MRI scans when given intradermally (within the skin). Apitope Technology Ltd. announced the results of its ATX-MS-1467 study this fall. The company reported a significant decrease in disease activity in the group treated by intradermal injection, but not in those treated subcutaneously (under the skin). Further phase II and phase III studies will determine whether ATX-MS-1467 can potentially be developed

into a safe, effective treatment for persons with multiple sclerosis. Apitope was the first in a series of partnerships between Fast Forward, the National MS Society’s drug development arm, and early stage biotechnology companies. The company successfully leveraged this support by entering into a research, development and license agreement with Merck Serono for development and commercialization of ATX-MS-1467.

Study: Proper Hydration Reduces CCSVI Incidents

ince June 2010, the National MS Society and the MS Society of Canada have funded seven research projects on the role of CCSVI in multiple sclerosis. CCSVI – or chronic cerebrospinal venous insufficiency – is a postulated MS-related abnormality of blood drainage from the brain and spinal cord. It was originally reported by Paolo Zamboni, M.D., with the University of Ferrara in Italy. Researchers conducting a recent Society-funded study led by Robert J. Fox, M.D., found that CCSVI occurrences were reduced when participants were

MSConnection • WINTER 2014

sufficiently hydrated. The team commented that dehydration may particularly be a factor for persons living with MS, who may prefer to drink less fluid because of bladder dysfunction. Projects such as this examine the structure and function of veins draining the brain and spinal cord in persons who represent a spectrum of MS types, severities and durations, and compare them to structure and function of veins of people with other diseases.

Walk MS connects people living with MS and those who care about them. It is an experience unlike any other – a day to come together, to celebrate the progress we’ve made, and to show the power of our connections.

GRAB YOUR FRIENDS & FAMILY AND PARTICIPATE IN AN EVENT NEAR YOU! San Antonio, TX Corpus Christi, TX New Orleans, LA El Paso, TX Amarillo, TX Fort Worth, TX Baton Rouge, LA San Angelo, TX

March 1 March 8 March 22 March 22 March 29 March 29 March 29 April 5

Albuquerque, NM Tulsa, OK Dallas, TX NW Oklahoma Shreveport, LA Las Cruces, NM Central Arkansas NW Arkansas

April 5 April 5 April 12 April 12 April 12 April 12 April 12 April 19

NE Arkansas Roswell, NM Permian Basin Lawton, OK Lubbock, TX Santa Fe, NM Oklahoma City, OK

April 26 April 26 April 26 April 26 May 3 May 3 May 3

Dates may be subject to change. Visit walkMS.org for current details.

Be Inspired. | Get Connected. | Raise Funds. | walkMS.org

National Multiple Sclerosis Society South Central Chapter 8111 North Stadium Drive, Suite 100 Houston, Texas 77054

On your tax returnâ&#x20AC;Ś make your mark to help create a world free of MS. This year, people in Louisiana and Oklahoma can make a mark to create a world free of MS. While doing your income taxes, please simply check a box on your state tax return form to make a charitable contribution to the National Multiple Sclerosis Society. Each contribution will go directly toward MS research, programs and services that support thousands of individuals living with MS. A small mark will make a big difference in the movement toward a world free of MS. Take this ad to your tax preparer, or contact the National Multiple Sclerosis Society for more information.

nationalMSsociety.org | 1.800.344.4867