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Moving Toward A World Free of MS Spring 2011

We’re on the Move across the Lone Star State Advocacy

Making Our Voices Heard

Research

Unstoppable Achievements

Programs

Class is in Session

Events

Rolling and Strolling for a Cure

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

The Official Magazine of the National Multiple Sclerosis Society: Lone Star

The official magazine of the National Multiple Sclerosis Society: Lone Star Amarillo • Austin • Dallas • Fort Worth • Houston • Lubbock • Midland • San Antonio

1-800-344-4867 Board of Trustees Chairman Brad Robbins Secretary ERNEST JOHNSON Treasurer GERALD MERFISH Regional Executive Vice President Mark Neagli MSConnection Editor James Black © 2011 National Multiple Sclerosis Society: Lone Star

multiple sclerosis and about current research that may one day reveal a cure.

MS STOPS PEOPLE FROM MOVING

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

The National Multiple Sclerosis Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The National Multiple Sclerosis Society assumes no liability for the use of contents of any product or service mentioned. Information provided by the Society is based upon professional advice, published experience and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. The National Multiple Sclerosis Society recommends that all questions and information be discussed with a personal physician. We mobilize people and resources to drive research for a cure and to address the challenges of everyone affected by MS.

Spring 2011 Volume 5 • Issue 2

The Official Magazine of the National Multiple Sclerosis Society: Lone Star

TABLE OF

CONTENTS

Letter from the Editor . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 ‘Amazing Race’ Star Hosts Amazing Movie Premiere in Dallas . . . . . . . . . . . . . . . . . 5 San Antonio Gets Chili at Dahill’s Cook-Off . . . . . . . . . 5 Activists Take Their Message to the Capitol For Texas Public Policy Conference 2011 . . . . . . . . . . . 6

24 Why We Move: Personal Stories Inspire Walkers and Cyclists

10 we’re

South Central Celebrates Unstoppable Achievements at 2011 Annual Meeting

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Horseback Therapy Riders Saddle Up for Rodeo Challenge

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Get Moving with Wellness Classes Near You

Empowered Activist Speaks Out to Help Texas Families . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7 Society Honors Congressman William “Mac” Thornberry as Representative of the Year. . . . . . . . . . . . 8 Event Partners Champion Meaningful Relationships. . . . . . . . . . . . . . . . . . . . . . . . . 14 Volunteering Has Special Meaning for Mother and Daughter Team. . . . . . . . . . . . . . . . . . . . . . . 15 Cyclists with MS Share Pedal Power . . . . . . . . . . . . . . . 16 Prolific Running Back Earl Campbell Scores with Society Teamwork. . . . . . . . . . . . . . . . . . . . 18 Champ Camp is Life-Changing Event for Teen. . . . . . . 20 Entrepreneurial Spirit Fast Forwards Exercise DVDs. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 30 Texans Love a Good Party . . . . . . . . . . . . . . . . . . . . . . . . 32 Houstonian Jim Mills Named 2011 Person on the Move . . . . . . . . . . . . . . . . . . . . . . . 33 MS Eye CARE Honored as Company on the Move . . . . . . . . . . . . . . . . . . . . . . . . . . . 33 Call, Listen and Live Better with Society’s Monthly Teleconferences . . . . . . . . . . . . . . . 41 Society Recaps High-Impact Research Progress . . . . . 42 Pediatric Centers of Excellence Publish Findings on Children with MS . . . . . . . . . . . . . . . . . . . . 45 Nerve Repair Teams Report “Remarkable” Results. . . 46 Study: Risk of First Neurologic Event Decreases with Sun Exposure and Vitamin D. . . . . . . 49 Researchers Report CCSVI Project Progress. . . . . . . . . 50 Moving Toward A World Free of MS

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F RO M T H E EDI T OR

Moving the Mission Forward through Words and Actions What moves you? Moving is something you hear a lot from the Society: Move it. Join the movement. Take action. Moving is who we are. So we’ve made moving the unifying theme for this spring issue of MSConnection. Moving words and actions are woven into the fabric of the Society’s mission by get-up-and-go-getters such as: • Advocate Kim Campbell, making her voice powerfully heard in the halls of power • Cyclist Ron Brannigan and a dynamic group of riders who are not letting MS slow them down • Football great Earl Campbell and his son Tyler, taking the ball and running with it for MS awareness • Horseback competitor Marlys Picinich, saddling up for a rodeo challenge in Fort Worth • Dr. Elliott Frohman with The University of Texas Southwestern Medical Center at Dallas, sharing impressive research on optics and MS

• Dr. Jerry Wolinsky and his colleagues from The University of Texas Health Science Center at Houston, advancing research into an exciting new realm of MS study • Dr. George Hutton, sharing his expert insight on current and upcoming research at the 2011 Annual Meeting in Tulsa, Okla. • “The Amazing Race” host Phil Keoghan, bringing a big mission to the big screen in Big D • Teen Brianna Poche, remembering her first lifechanging visit to Champ Camp for children living with MS

They are some of the dynamic movers who share their engaging stories in this edition of MSConnection. In turn, I hope this issue moves you: To share it with others. To advocate. To volunteer. To get involved. To donate. To realize that it only takes one person to make a difference in the lives of thousands – and that person is you. Keep reading and keep moving! James Black MSConnection Editor james.black@nmss.org National MS Society 8111 N. Stadium Drive, Ste. 100 Houston, TX 77054

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MSConnection • SPRING 2011

Missed the Last Issue? Because of budget constraints, the Winter 2011 issue of the Lone Star MSConnection was available as an online-only edition. You can still view it online by visiting JointheMovementLoneStar.org and clicking “About Us” in the left-hand navigation bar, then “MSConnection.” The winter online edition featured photos from the 2010 Family Discovery Camp; research updates on meditation benefits, foot drop and seasonal disease activity; and profiles of donor Jack Enlow, Walk MS team Kristi’s Krusaders and corporate partner KBR. Clicking on the magazine itself will enlarge the pages for easy viewing.

‘Amazing Race’ Star Hosts Amazing Movie Premiere in Dallas Phil Keoghan (center), host of CBS-TV’s “The Amazing Race,” was on-hand Feb. 17 for the Dallas premiere of his film “The Ride.” The event was a sold-out success, with 245 people in attendance and $3,315 raised for the National MS Society. “The Ride” chronicles Keoghan’s 40-day bicycle ride across the United States in 2009, covering more than 3,500 miles to raise funds and awareness for the Society. Joining Keoghan from the Society were (below) North Texas Vice President Frank Timmons and Senior Director of Development Jessica Woodward.

Share Your Story in the Next MSConnection We love when readers contribute their stories to MSConnection. Your story has the power to inspire, motivate and move others. This is your forum to share your voice. This quarterly magazine reaches thousands of people living with multiple sclerosis, their families, health care professionals and others across Texas. To contribute your story, story ideas or photos, contact MSConnection Editor James Black at james.black@nmss.org.

How Many People have MS?

Approximately 400,000 Americans have multiple sclerosis. Every week, about 200 people are newly diagnosed. Worldwide, MS affects about 2.5 million people. The Centers for Disease Control and Prevention (CDC) does not require U.S. physicians to report new cases and, because symptoms can be completely invisible, the numbers can only be estimated.

San Antonio Heats Up at Dahill’s Cook-Off Team Dahill held the 1st Chili Cook-Off benefiting the National MS Society in February. The cook-off fundraiser was simmered to perfection at Dahill’s headquarters in San Antonio. More than six chefs dished up their tasty Texas wares and more than 30 chili connoisseurs bellied up for a serving or two. In all, Team Dahill raised more than $350 to support MS research and services.

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ADVO C A C Y

Activists Take Their Message to the Capitol for Texas Public Policy Conference 2011 by Linnea Nasman

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n March 1, more than 60 MS activists from across Texas joined together and met with their legislators in Austin, bringing their stories and voices to the State Capitol. Activists personally visited more than 80 legislative offices, a great success that demonstrates how their collective efforts help shape policies and champion the rights of people with disabilities and MS. This year, activists promoted two key issues of importance to the MS community: • Supporting legislation to protect consumers against unexpected increases in prescription drug cost-shares. • Preventing budget cuts to Medicaid, health and human services, and the Community-Based Alternatives (CBA) program.

While MS activists made their marks in Austin, everyone can take action at home. Contact lawmakers through letters, e-mails, faxes or phone calls. Call local talk radio programs. Speak out in favor of policies that support funding for research that will move us closer to ending MS. For information, visit the Society’s local website at JointheMovementLoneStar.org/advocacy.

Linnea Nasman is the Programs and Government Affairs Coordinator with the Society’s Austin office. She can be reached at linnea.nasman@nmss.org.

Empowered Activist Speaks Out to Help Texas Families K

im Campbell knows first-hand the toll that multiple sclerosis can take on a family. When she tells her story, people listen. Here is Kim’s MS activist story: “This year, because of the political and economic climate, it is more important than ever to advocate for change. When times are tough, programs that support Texans are more important than ever. People want to get the support they need in their communities so they can stay at home. Thirty-three years ago, when my husband Gary and I said, ‘I do,’ we had no idea that MS would become a part of our lives. We know what it’s like to need respite care. We know what it’s like to have to stay home from your work because you have to care

for your spouse. We know what it’s like to be fired from a job you loved because your FMLA ran out. It was these events that make issues like respite care and budget cuts personal. Luckily, the National MS Society showed us how to advocate for change. Gary testified last session and I recently testified for the House subcommittee that decides how to fund home- and community-based services. This was so empowering to both of us. We would like to be able to continue our work and to help others do the same. We tell our story not because we want your sympathy, but because we want to help Texas move forward and keep families from being torn apart.”

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Society Honors Congressman William “Mac” Thornberry as Representative of the Year

MS Activists Judy and Steve Rogers met recently with Rep. William “Mac” Thornbury (center).

by Linnea Nasman

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ach year, the National MS Society recognizes elected officials who have worked to improve the lives of people with multiple sclerosis. These legislators support the Society, our region, our policy priorities and, most importantly, people living with multiple sclerosis. Congressman William “Mac” Thornberry was honored with the Society’s 2010 Representative of the Year Award during the Society’s National Public Policy Conference in Washington, D.C. in early March. Thornberry is an inspirational member of the Congressional MS Caucus. He advocates for access to safe and effective medications, and introduced the Part-D Off-Label Prescription Parity Act that would allow Medicare coverage of medication prescribed for an off-label use when such use is supported by peerreviewed medical literature. Gail Lindsey, Programs and Services Manager

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MSConnection • SPRING 2011

in the Society’s Amarillo office, said, “Congressman Thornberry makes it a priority to meet with MS activists in his district and learn their concerns and needs. He has a reputation for listening to his constituents and has always been willing to do whatever he can to provide local support for the Society, including helping with fundraising efforts and meeting with activists while in-district.” Thornberry actively seeks input and desires to collaborate on policies that improve the lives of people living with MS. The Society thanks Congressman Mac Thornberry for actively working to drive the MS mission.

Linnea Nasman is the Programs and Government Affairs Coordinator with the Society’s Austin office. She can be reached at linnea.nasman@nmss.org.

MS doesn’t wait and neither should you. Visit us online at JointheMovementLoneStar.org and click the Advocacy link in the left-hand column. You’ll learn more about our advocacy efforts to help Americans living with MS and how you can make a difference, for example:

Join the Movement

and Get Involved • Become an MS Advocate: Join the MS Advocacy Action Network. Respond to occasional calls to action with e-mails, letters and phone calls to policymakers, and receive advocacy updates and e-newsletters on vital MS policy issues. • Become an MS Issue Ambassador: Make two in-person visits or more per year to legislators, in addition to Advocacy Action Network activities. • Contribute to the MS Story Bank: Share your personal story about challenges you have encountered; with your permission, stories will be used to raise greater awareness of MS policy issues. MS STOPS PEOPLE FROM MOVING

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

we’re South Central Celebrates Unstoppable Achievements at 2011 Annual Meeting by James Black

Residents across five states got connected in a new way in the new year. The National MS Society’s 2011 South Central Conference and Annual Meeting was the first to be broadcast live over the Internet. Webcast from host city Tulsa, Okla., the Jan. 29 event marked the latest advance in keeping everyone affected by multiple sclerosis plugged in to the Society’s achievements and happenings. The 2011 Annual Meeting also marked the first united forum of its kind for the Society’s South Central states of Texas, Oklahoma, Louisiana, Arkansas and New Mexico. The states have united to tackle MS head-on and to better help everyone affected by this unpredictable disease. South Central’s five-state partnership serves

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MSConnection • SPRING 2011

more than 80,000 people in 438 counties in Texas, Oklahoma, Arkansas and New Mexico, and in 64 parishes in Louisiana. In addition to the meeting’s business portion, during which the South Central slate of officers and board members was approved, the January event was an opportunity to celebrate and reflect on the organization’s local achievements in 2010. Achievements in Programs and Services The Society’s Programs and Services branch out into many areas to support, inform and enrich the lives of everyone with MS. This is achieved through research, financial assistance, scholarships, camps and social

activities, wellness programs, career counseling, educational programs, clinical partnerships, information and referral services, care management, Self-Help Groups, and advocating for the rights of persons affected by MS.

wellness programs in yoga, Pilates, aquatics, physical training, therapeutic horseback riding and art therapy. • More than 3,400 persons attended weekly assisted physical training sessions in the Dallas and Fort Worth offices. Each session included stretching exercises, lightweight resistance training and breathing techniques under the direction of a certified personal trainer.

• In 2010, through South Central’s Scholarship Program, 31 scholarships were renewed and 37 new scholarship applications were awarded, totaling $131,000. This program assisted families and individuals affected by MS by financially supporting educational goals, and, in turn, helped • More than 100 Self-Help Groups were available engage young people – including many up-andin-person, online and by telephone to connect coming doctors and regional residents with researchers – in the others in welcoming The entire one-hour 2011 South ongoing work of the environments. Central Annual Meeting program National MS Society. • In 2010, South video can be viewed online. Visit • South Central Central was downJointheMovementLoneStar.org, provided $455,000 right neighborly with click “Programs and Services” in the to its vital network of the Day of Service and MS clinics, helping left-hand navigation bar, then click Neighbor to Neighbor enhance health programs. These “2011 Annual Meeting.” care for the 16,300 initiatives engaged patients served. volunteers to help persons with MS with • In a year as economically challenging as 2010, household chores, home maintenance and yard the Direct Financial Assistance Program was a work. lifeline for providing help to maintain personal health, safety and independence. When they had • The PlanningWise program provided 90-day, critical needs that could not be met through their one-to-one consultations for financial planning own means or other community resources, 1,101 and career coaching for those with MS who have individuals and families living with MS turned recently lost or are at risk of losing employment or to the Society and were served by this program are considering a career change. through nearly $363,000 in financial assistance. • Through its Information and Resource Center, • Recreational and wellness programs helped 550 South Central served more than 5,000 members families from around the region enjoy Family Fun and generated nearly 12,000 interactions, Days at baseball games, museums and amusement providing immediate assistance for information parks, while more than 1,600 individuals about MS, programs and referrals to community participated in 2010 Social Programs. resources. • South Central hosted five camps and two MS getaways for 533 individuals in 2010. • Nearly 2,700 individuals engaged their bodies, minds and spirits by taking part in 33 ongoing

• In 2010, MS activists made their voices heard in the halls of power. Enthusiastic activists sent thousands of personal e-mails to state and national legislators; testified at legislative hearings; made in-person visits to state and federal legislators;

Moving Toward A World Free of MS

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and worked in their communities to champion the rights of people with disabilities. Legislative success came with the passage of a Tax CheckOff bill in Louisiana and Oklahoma, allowing the National MS Society to be listed on income tax forms, giving each taxpayer the opportunity to donate one dollar or more to the Society. Achievements in Development and Fundraising In 2010, South Central citizens stepped up, got on a roll and took it to the streets for the MS mission. • More than 50,000 event participants in Texas, Oklahoma, Louisiana, Arkansas and New Mexico laced up for a Walk MS event or saddled up for a Bike MS ride. Of those, nearly 2,300 people living with MS participated in Bike MS and Walk MS events, rolling and strolling along to raise $1.18 million last year. • Corporate partnerships generated millions of dollars to underwrite South Central event costs. For instance, the Society’s partnership with Apache provided a new $10,000 presenting sponsorship for Midland’s Bike MS: Cactus and Crude ride and, in total, $30,000 in sponsorships. Toyota Gulf States’ three-year partnership includes support vehicles for use during fundraising events and, in 2013, cash sponsorship in Oklahoma, Louisiana and Texas. In addition, the largest South Central sponsorship has been built with Pfizer providing nearly $132,000 in cash sponsorship for underwriting Louisiana, Oklahoma and Texas walks; Pfizer also will support four South Central Bike MS rides. • Thousands of donors lent personal support through individual and major gifts. For example, Steve and Amber Mostyn of Houston supported MS advocacy with an $88,000 gift; Ross and Karen Miles of San Antonio made a $50,000 gift to MS research and set a national challenge which generated $200,000; and the Jack Enlow estate included the Society in planned giving that resulted in a $424,000 gift to support services.

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• More than 30 events across the region were driven by volunteers who planned, funded and promoted initiatives to raise money and awareness. These creative endeavors ranged from down-home barbecues in Van Alstyne, Texas and a Dallas Movers and Shakers Golf Tournament that has cumulatively raised $150,000 in eight years to Oklahoma’s ship-shape Annual Close MS Regatta and Theta Xi Fraternity’s Greek Olympics at Louisiana State University in Baton Rouge. Achievements in Research Dr. George Hutton was the guest speaker for the 2011 Annual Meeting. As the current chairman of the Clinical Advisory Committee, Director of the MS Clinic at Ben Taub General Hospital in Houston and Assistant Medical Director at the Maxine Mesinger Multiple Sclerosis Comprehensive Care Clinic, Baylor College of Medicine, Dr. Hutton has an extensive background in research, education and contribution to the care of persons with MS. He shared insight on three top research achievements in 2010: approval of the first oral disease-modifying therapy for MS, approval of the first and second symptomatic treatments for MS, and greater recognition of exposure factors in MS, such as smoking and vitamin D. In addition, Dr. Hutton provided a look ahead at research in the pipeline for 2011, including a brief discussion of stem cell therapies and myelin repair. Dr. Hutton’s informative presentation, his answers to questions submitted during the event, and the entire one-hour Annual Meeting program can be viewed online. Visit JointheMovementLoneStar.org, click “Programs and Services” at the top of the lefthand navigation bar, then click “2011 Annual Meeting” to watch the video and presentation. Together and across five states, South Central’s 2011 Annual Meeting showcased the positive, powerful change taking place in the Society’s virtually unstoppable mission.

James Black is the editor of MSConnection. He can be reached at james.black@nmss.org.

South Central Board of Trustees Named for 2011 T

he National Multiple Sclerosis Society’s unstoppable mission occurs in large part thanks to strong volunteer leadership at the highest level of the organization, the South Central Board of Trustees. The Fiscal Year 2011 slate of officers and board members was approved at the recent Annual Meeting in Tulsa, Okla. As a volunteer-driven nonprofit organization, the Society is indebted to these leaders for their time, talents and dedication in serving others: Officers Brad Robbins, Chairman, Houston, TX Ernest Johnson, Secretary, PM Realty Group, Houston, TX Gerald Merfish, Treasurer, Merfish Pipe & Supply Co., and Pipe Exchange, Houston, TX Board Members Davis Baldwin, Gulf Coast Toyota, Austin, TX Patti Barker, Oklahoma Blood Institute, Tulsa, OK Russ Bookbinder, Texas Tech University, Lubbock, TX William Bradley, M.D., Neurology Associates of Arlington PA, Mansfield, TX William Byerley, PricewaterhouseCoopers, Houston, TX David Carder, Cowen Construction, Tulsa, OK Marshall Cohen, ConocoPhillips Inc., Houston, TX Doug Coy, Attorney at Law, Little Rock, AR Laura DiStefano, Fort Worth, TX Lisa Dollinger, Clear Channel, San Antonio, TX Scott Duggins, New Orleans, LA Packy Evans, Dillingham Insurance, Edmond, OK Michael S. Fagan, League City, TX I.D. Freed, R.Ph., Ask the Pharmacist, Houston, TX Amy Gutierrez, M.D., LSU-Health Science Center, New Orleans, LA Trevor Hale, Ph.D., University of Houston-Downtown, College of Business, Houston, TX Jim Harvey, Abbott Holdings LLC, Dallas, TX Jane Heidingsfelder, Jones Walker, New Orleans, LA Stephen K. High, Gartner, San Antonio, TX George Hutton, M.D., Maxine Mesinger MS Clinic, Houston, TX Kep Kepner, Kepner & Company, Dallas, TX Thomas G. Krentel, Krentel Management Services, New Orleans, LA Jamie Lathrop, Morgan Stanley, Oklahoma City, OK Melanie Lawson, KTRK TV, Houston, TX

Benjamin Levy, M.D., Albuquerque, NM Doug Levy, imc2, Dallas, TX Don McCormick, Concho Resources, Midland, TX Mark McLeland, Merrill Lynch, Fort Worth, TX Brook Minx, Donato, Minx & Brown, Houston, TX Marisha Moore, Blue Cross Blue Shield of Oklahoma, Cleveland, OK James M. Morris, Edmond, OK Mike Murphy, Deloitte & Touche, Fort Worth, TX Henry Noey, AON Risk Services, Houston, TX John Norden, Deloitte & Touche, Austin, TX Kevin O’Sullivan, MIRATECH Holding, LLC, Tulsa, OK Mike Palamone, Urban Systems Associates Inc., New Orleans, LA Gabriel Pardo, M.D., MS Center of Oklahoma, Oklahoma City, OK Mimi Parsons, Frost Bank, Houston, TX John Pearson, Houston, TX David Peters, Peoples Bank, Albuquerque, NM Sue Porretto, Provident Enterprises, Houston, TX Donald E. Pritchard, Metairie, LA Dwight Riskey, Riskey Business Solutions, LLC, Dallas, TX Carla Rosenberg, SCA Promotions, Dallas, TX Rana Russell, New Braunfels Rural Health Clinic, New Braunfels, TX Jodi Lee Ryan, Arlington, TX Doug Sanders, Synergy Bank, Fort Worth, TX Richard Sertich, Goodman Realty Group, Albuquerque, NM Stephen S. Speier, FKM, Houston, TX Austin J. Sumner, M.D., New Orleans, LA David Tabor, Affiliated Asset Managers, Inc., Thibodaux, LA Jim Tidwell, WEDGE Group, Houston, TX Laura Vaccaro, Valero Energy Corporation, San Antonio, TX Jill Wasserstrom, Buffalo Specialties, Houston, TX Wayne Ziegler, SemMaterials, Austin, TX

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Event Partners Champion Meaningful Relationships by Calvin Pollard II

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hen people think about corporate sponsors, the perception could be that the company’s involvement is only for tax benefits. The National Multiple Sclerosis Society seeks out corporate partners that want a meaningful relationship to meet the goals of the event which will make a true impact on moving us one step closer to stopping MS. Many corporations work closely with Bike and Walk MS events to associate themselves with items within the events that have a direct correlation to educating, creating MS awareness or assisting clients with day-to-day activities. For example, Noble Energy underwrites the MS Champions bandanas program, which is another way to help walkers and cyclists stay focused on the mission. These orange bandanas are available for event participants to have signed by their MS Champions and carry with them on each event route. Knowing that they are riding or walking for their MS Champions moves participants closer to the goal. In addition, The Scooter Store offers a unique opportunity to play a role in the day-to-day lives of people with MS. This partnership does not directly

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support the events in which they sponsor; instead, The Scooter Store donated scooters which assist clients across the region in moving easier. Education and awareness of MS are the focus of many event sponsors. Pfizer supports the MS Experience located at Walk MS events. This educational tool offers fundraisers a practical handson example of some of the symptoms of MS. During MS Awareness Week, partners like Lupe Tortilla, Visible Changes and My Fit Foods place informational brochures and posters in their retail locations for people to learn about MS. It is the goal of the National MS Society to continue to find corporate partners that want to support our fundraising events, and to bring about social consciousness and assistance for the people we serve. It is our combined hope that their vital support will make the end of MS a reality.

Calvin Pollard II manages corporate partnerships with the National MS Society. Based in the Society’s Houston office, he can be reached at calvin.pollard@ nmss.org.

Volunteering Has Special Meaning for Mother and Daughter Team by Lee Kilborn

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here is an African proverb: “It takes a village to raise a child.” At the National Multiple Sclerosis Society, we have our own adaptation: “It takes a village to put on an event.” Sometimes we have a chance to blend those two adages into a winning combination. National Charity League (NCL) is a motherdaughter organization that heavily supports our North Texas Walk MS and Bike MS events. Whether helping set up an event site, registering participants or working a bike rest stop, the mother-daughter teams are enthusiastic and unfailingly dependable. NCL provides opportunities for members to experience community service, educational and cultural activities as a team. The mothers involved understand the importance of instilling tolerance and kindness in their daughters, our future community and world leaders, and the girls get a chance to make friends who share the same values. The Society is honored to collaborate with mothers in teaching their daughters what it means to be civic-minded young adults. Our collaborations are always successful and sometimes absolutely amazing. For instance, Renee Brown and her daughter Ashton have been involved in NCL for five years. Volunteering for Society events has a special meaning for this dynamic duo. Renee’s husband Rodney, a

top fundraiser for North Texas’ Bike MS: Sam’s Club event, was diagnosed with MS 17 years ago. His perseverance and involvement serve as inspirations for his wife and daughter. Ashton said, “It is really neat to think that the small part we play in serving as volunteers and raising money may someday help to find a cure for MS.” Said Renee, “The experience of volunteering for various philanthropies through NCL has been a great experience. Of all the organizations we have served, this one has been by far the most meaningful for us as a family affected by MS. I remember being at the Walk MS for the first time and seeing all the volunteers getting set up on a very early and very cold morning. I could not believe how many were there to help. “As the sun came up and it came time for the walk to begin, I watched as hundreds of people walked, some with the disabilities that MS can bring,” Renee continued. “I remember being flooded with an overwhelming sense of gratitude that all these people were here united in one purpose: to stop MS.”

Lee Kilborn is the Community Development Manager in the Society’s Dallas office. She can be reached at lee. kilborn@nmss.org.

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Cyclists with MS Share Pedal Power on Road to a Cure by James Black

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Because they can, Houston-area cyclists are actively changing the way people see the face of MS.

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ecause We Can is a group of cyclists living with multiple sclerosis, comprising men and women of different ages and abilities. Their bond is the shared passion to stay active and maintain a healthy, positive outlook despite the daily speed bumps of MS. The aptly-named group got on a roll in October 2009, thanks to Bike MS participants and top fundraisers Ron Brannigan and John Pearson. The two riders took their idea for a vibrant, alternate form of support for cyclists with MS and it gained momentum, growing from its original roster of five people to more than 20 today. Brannigan, a 10-year veteran of the 180-mile Houston-to-Austin BP MS 150, sees this cycling revolution as a vital evolution for the MS community. “When the National MS Society started, people with MS didn’t have a lot of medications to help manage symptoms. Now that we have medications, the quality of life has evolved,” Brannigan said. “Quality of life will only continue to improve. We’re showing that MS and a healthy lifestyle aren’t two mutually exclusive things.” Because We Can members meet monthly to network and socialize at Bayou City bike stores such as Sun and Ski Sports and Bike Barn. They stage quarterly organized rides, barbecues and social gettogethers, and also volunteer at Society-driven events such as camps for families with MS. Group participants train for the Society’s annual Bike MS fundraising rides throughout Texas. Four Because We Can members – Brannigan, Pearson, Matt McAughan and Karla Zielke – made the BP MS 150’s Club 300 of top fundraisers, raising more than $5,700 each during the 2010 ride. Together, the four cyclists raised nearly $40,000. Through such cycling and fundraising efforts, Because We Can harnesses its members’ collective energies and talents to serve as a positive example to

the MS community, especially the newly diagnosed. “That’s our true measurement: how we’re making a positive impact in the lives of others with MS,” Brannigan said. An unexpected benefit has been the involvement of members’ spouses and families. “MS crosses all boundaries and this group gives family members an opportunity to talk with others. Spouses of people with MS are able to share with other spouses who are learning how to cope with this disease that affects the entire family,” Brannigan said. Through a valuable initiative started with the help of the late Dr. Doug Carmichael, members also sport cycling jerseys that boldly let other riders know they are moving forward one mile at a time while living productively with MS. Sponsor Molly LLC currently underwrites costs for the jerseys emblazoned with “I have MS, this is why I ride.” Brannigan has traveled his own journey since disclosing his diagnosis to friends and co-workers two years ago. “My life has opened up as a result of MS, with so much outpouring of support, pure love and understanding,” Brannigan said. “I have met so many great folks and so many who have connections to MS. To see the strength some have at overcoming adversity has been an inspiration.” An MS diagnosis can be an uphill challenge, but hills and challenges are just another day in the saddle for these Lone Star cyclists. “Because We Can has really made a difference in my life,” Brannigan said. “To be around people with a healthy lifestyle and to be an example to others, it’s been very rewarding. Life’s too short to spend it without making a difference.”

For more information on the Because We Can cycling group, visit becausewecanMS.org or send an e-mail to becausewecanMS@yahoo.com. James Black is the editor of MSConnection. He can be reached at james.black@nmss.org.

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Tyler Campbell Diagnosed in 2007

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MSConnection • SPRING 2011

Prolific Running Back Earl Campbell Scores with Society Teamwork Father & Son Gridiron Greats Join the MS Movement

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his spring, football legend Earl Campbell returns to the field with the goal of stopping MS. With the help of some classic characters from Warner Bros. animation, the former running back for the Houston Oilers and New Orleans Saints is ‘tooning up in an autographed, custom-framed Animation Art Limited Edition piece to be released through Warner Bros. This special lithograph will raise funds in honor of his son, Tyler Campbell, through the Pro Player Foundation in partnership with the National Multiple Sclerosis Society. Like his father, Tyler Campbell, 24, was a running back, playing for San Diego State University in 2006 and 2007. Diagnosed with MS in 2007, Tyler has since become an active Society ambassador in his home state of Texas and is passionate about raising awareness to help others living with the disease. “I view my MS diagnosis as a blessing,” Tyler said. “I now have the opportunity to share my experience to help others living with this disease and make an impact on the MS community.” Tyler is teaming with his father, who made his own legendary impact in football record books. Pro Football Hall of Fame member Earl Campbell was one of the most powerful runners in National Football League history. Although the gridiron star rushed for more than 1,000 yards in five of his first six seasons, his finest season came in 1980, when the former Heisman

Trophy winner ran for an incredible 1,934 yards, the second best rushing performance in pro football history at the time. Former Oklahoma Sooners and Dallas Cowboys coach Barry Switzer once called Earl Campbell “the greatest player that ever suited up.” The Oilers’ and Saints’ star now joins an elite sports club of pro athletes honored by Warner Bros., including Saints quarterback Drew Brees, famed Chicago Bulls player Michael Jordan, boxing legend Muhammad Ali, Boston Red Sox pitcher Tim Wakefield, Derek Jeter of the New York Yankees and hockey star Wayne Gretzky. The limited edition piece featuring Earl Campbell, available as a fine art lithograph or as a hand-painted cel, is hand-signed by Earl and accompanied by a Certificate of Authenticity. “We are honored to partner with the Pro Player Foundation and the Campbell family to help create a world free of MS,” said Mark Neagli, Regional Executive Vice President with the National MS Society. “Earl and Tyler have demonstrated unwavering support to the cause. It’s a privilege to work with them for this one-of-a-kind fundraising opportunity.” Details are available at proplayerfoundation.org. A portion of proceeds will support the National MS Society.

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Champ Camp is Life-Changing Event for Teen by Brianna Poche Editor’s note: The National MS Society’s Champ Camp was held March 18-20 at Camp for All in Burton, Texas. Champ Camp offers a fun-filled weekend getaway at this accessible location where everyone can enjoy all activities, regardless of ability. Baton Rouge, La. sophomore Brianna Poche shares her experience at last year’s camp.

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hat is Champ Camp? I asked myself this question as my mom told me that our family was invited to go to it in March 2010. I had never been to such an event, but I love going to new places and meeting new people. Also, it would be interesting to meet other young people with the same condition as me, multiple sclerosis. I was diagnosed at 13. While multiple sclerosis itself is a rare condition, it is even rarer to be diagnosed in your teen years; it normally affects those in their 20s and older. It came as a great shock to me and my family, but I have maintained a positive attitude and optimistic outlook. I take Avonex every Friday and have had only one episode of demyelination – my initial one – which is how I got diagnosed.

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Champ Camp pleasantly surprised me. I met many other children with MS, many of whom had it more severely than me. It really put things into perspective. I felt like the activities were enjoyable, but I mostly felt that they gave us the opportunity to really bond with other people and camp volunteers. They gave everyone the chance to participate in the fun events and games. I thoroughly enjoyed roasting marshmallows and dancing around the campfire. Also, the fact that there was an “endless” chocolate milk machine basically made my whole weekend. There were also opportunities for patients to talk in small groups and one-on-one. Siblings were encouraged to share stories of living with someone who has MS. I got to hear so many stories of attacks, medications and MRIs, and it helped me to realize how lucky I am. Champ Camp changed my life and I will definitely be attending in years to come. I think the future for those with multiple sclerosis is a bright one, because I feel like the medical field is so close to finding a cure. I may even aid in finding the cure one day, as I’d like to enter the medical research field.

Horseback Therapy Riders Saddle Up for Rodeo Challenge by Erin Fogarty and Allison Griggs

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he 115-year-old Fort Worth Stock Show and Rodeo is often spoken of as legendary. This sentiment also extends to the event that kicks off the stock show, the Chisholm Challenge Competition for Special Riders. Held this past January, the Chisholm Challenge is a three-day horse show for riders with disabilities. For the past eight years, it was been held as the opening event for the Fort Worth Stock Show and Rodeo. Competitors in the Chisholm Challenge compete in events patterned after the American Quarter Horse Association events, including Walk, Trot and Canter Hunt Seat Equitation; Western Equitation; Trail Horse Class and Showmanship. Participants compete in the same venue as other stock show and rodeo equestrian events, and earn the same ribbons and first-place belt buckles as all other equestrian competitors. Nine Therapeutic Horseback Riding Centers were invited to participate in the show, including

Wings of Hope Equitherapy. Wings of Hope provides horseback riding programs for children and adults living with disabilities, including the National MS Society’s therapeutic horseback riding program in the Fort Worth area. Wings of Hope is a member of the North American Riding for the Handicapped Association (NARHA); this ensures that all riders have certified instructors and trained horses, and recognize and respect all safety requirements. The benefits of therapeutic horseback riding for those with disabilities, including MS, are well established. These include enhancing overall functional activity; improving balance, coordination, spatial orientation and cognitive function; and empowering riders’ spirits. Allison Griggs, instructor for the Society’s therapeutic horseback riding program, said, “For many of our riders, the Chisholm Challenge is the only competition that they are physically, emotionally or

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financially able to compete in. Our younger kids don’t necessarily get to go out and play on a soccer team. This competition not only gives the rider a chance to compete, but to have friends and family come out and be cheerleaders for their riders. It gives our adults something to strive for, something to look forward to, and something to hold themselves accountable for the skills that they and their horses are working on week to week in the barn.” Knowing the value of the Chisholm Challenge, Allison suggested the idea of competing to Marlys Picinich, a two-year veteran rider in the Society’s therapeutic horseback riding class. Marlys has lived with MS for more than 30 years. Before her diagnosis, Marlys had an exciting career about which she was passionate. She was also active in many outdoor sports. She continued her career and recreation pursuits while living with MS, but, over the years, she gradually lost the ability to participate in these activities. She reached a point when she felt she could no longer work or play, and it was “a devastating loss.” Marlys joined the National MS Society and took particular interest in the Society’s wellness programs because of her active past. She first joined the assisted

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physical training program in the Fort Worth office and, later, the therapeutic horseback riding program. At that point, she said, her life changed. “Now I have new passions and new goals: wellness and horseback riding,” Marlys said. Riding at Wings of Hope has been a fulfilling experience for Marlys. She believes that working with the horse each week has been beneficial in increasing her core muscle strength as well as strengthening her legs. Marlys said, “If I am having trouble walking, that’s OK, because my horse walks for me. You build a special bond with the horses you ride.” Alison recognized the harmony and balance displayed by Marlys and Doodles, one of the horses at Wings of Hope, and encouraged Marlys to compete in the Chisholm Challenge. Marlys was excited about this new goal and accepted the challenge. “The preparation was sometimes confusing and frustrating. With MS, it is hard to focus and remember details due to cognitive issues,” Marlys said, “but I was determined to get it right because the horse was also in training, learning and preparing the correct pattern for the show.” Marlys competed in two events -- Western

Equitation and Trail -- this past January. During Western Equitation, the judge in the arena asks riders in the class, or group of three to eight riders, to perform certain tasks. As they ride along the wall in the arena, they are asked to make circles, reverse directions, halt and walk on. The judge collectively watches all of the riders, critiquing body position, posture, reining and overall communication between rider and horse. Competitors then ride into the center of the arena and are given their awards. Marlys also competed in Trail at the Chisholm Challenge. This is a memorized pattern that allows the rider to focus on several different skills. These skills can include backing up, asking your horse to step sideways to open or close a gate, and pushing to stand as the horse walks over obstacles. During a trail class, the rider and horse are the only participants in the arena. “Trail is extremely beneficial for riders with MS because it holds them accountable for all of the skills they have learned during their weekly classes,” said Allison. “It is challenging physically because riders have to use their core muscles, legs, arms, hands and reins, all at the same time. Mentally, it is great because they have to really think about each task step by step, as well as memorize the entire pattern.” Marlys recalled that riding in the show was an amazing experience. Even while living with MS, she

said it was something she could do and “do well.” Marlys actively improves her well-being through her participation in the Society’s wellness classes and opportunities like the Chisholm Challenge, all while living with MS and with an infectious attitude. The Chisholm Challenge, she said, was “not about winning, but about finishing.” Marlys recovered a sense of accomplishment that she felt was lost long ago and that, she said, is truly legendary.

Erin Fogarty is the Programs and Services Manager in the Society’s Fort Worth office; she can be reached at erin.fogarty@nmss.org. Allison Griggs teaches therapeutic horseback riding for persons with MS through the Society’s wellness programs in Fort Worth. Details on the Society’s wellness classes and programs can be found in a separate article in this issue of MSConnection or by calling the Society at 1-800-344-4867.

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C OVER S T OR Y

Why We Move

Personal Stories Inspire Walkers and Cyclists

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his spring, in Bike MS and Walk MS events across Texas, thousands of people are on the move to raise money for MS research and services. The reasons for participating are as diverse, as compelling and as engaging as the participants themselves:

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Positive and Active Participants “I am newly diagnosed. I want to be a positive and active participant in the MS movement. I want to do all that I can to make this disease a disease of the past.” Walk MS: San Antonio participant Debbie Starrett from San Antonio

“My mother was diagnosed in 2009. I ride to help people with MS and their families. I ride to spread awareness and educate people on this enigma of a disease. But mostly I ride for my mother, who remains one of the strongest people I have ever met.”

worthwhile. Living with a family member who has MS has taught me patience, humor and humility.” Walk MS: Amarillo participant Wes Brown from Amarillo

“My wife, Anne, was diagnosed about five years ago. I can’t cure her of the disease and I can’t control her MS symptoms, but it is within my power to raise funds to help find a cure.” BP MS 150 participant and ConocoPhillips team cyclist David Roland from Houston

Houston-to-Austin BP MS 150 participant Ashley McGowan from Cypress

“This April, I will ride my eighth BP MS 150 at age 50. I ride for my mother who has MS for over 30 years. She is my inspiration.” BP MS 150 participant and Team Shell cyclist Andrea Patton from Houston

“I have MS. I walk for those who cannot. I am so blessed to have the health I do have. I walk so that MS will not get on ‘my last nerve’.” Walk MS: Amarillo participant Jamie Uphold from Amarillo

“I was diagnosed in 1994. I have benefited from the research that has created drug therapies that allow me to fight back. I am able to live life thanks to the hard work of those before me. I want to give back. This walk is a way to do that.” Walk MS: San Antonio participant Denise Yanus from Converse

“As a doctor, I have taken care of patients with MS going through surgery. They have shared life stories, family stories and the way this devastating disease has limited their lives. I feel compassion for them, I love them and my greatest desire is to help them.” BP MS 150 participant Carlos Rios from Humble

“MS started affecting my life when I was 8. I can’t imagine my life without it. It has made me look at people with disabilities as not having something that keeps them from living, but makes their living

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More Motivated than Ever “I joined the walk because my mom is unable to walk this year. I wanted to do this for my amazing mom.” Walk MS: Dallas participant Meghan England from Dallas

“I have MS. I am doing this in honor of my family, those recently diagnosed and those to be diagnosed.” BP MS 150 and Frisco-to-Fort Worth Bike MS: Sam’s Club participant Preston Walker from Hudson Oaks

“My personal motivation was my friend Toni. I met Toni 20 years ago. She had already been diagnosed several years prior and it never stopped her from living a good life. This past July, Toni passed away. Looking back, I realize she never complained once about having MS. She fought through it, got on with life and would tackle any obstacle that got in her way. This year will be the first time I walk in her memory. I am honored to do it.” Walk MS: Dallas participant Debbie Digrispino from Irving

“I’m 46 and last February was diagnosed with RRMS. I am now more motivated than ever.” BP MS 150 participant Martin Lopez from Houston

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“I am a mother who works full time. I also have MS. Juggling motherhood and working with a chronic illness gets tough. I walk so that programs can be available for others and myself if I need them. I enjoy having my kids grow up witnessing all the good that you can do for an organization. I have had MS since my first child was 1 year old. I don’t know motherhood without it.” Walk MS: Fort Worth participant Jlynn Wilkerson from Keller

“MS has forced me to evaluate my life and appreciate everything in it. It has helped me to realize that people - especially friends and family - are more important than anything else and, in the end, all that really matters.” BP MS 150 participant Nina Newton from Houston

“My mother was diagnosed in 1964. She was never able to realize the great advances the Society has made toward finding a cure. I ride for her and all those with MS.” BP MS 150 participant and Team Chevron cyclist Robert Walker from Humble

A Way to Say Thanks “I have MS, diagnosed in the summer of 2002. I walk every year and fundraise to help aid in research and all aspects of helping all of us living with the disease. I like to keep moving. I have this theory of ‘Move it or lose it.’ I don’t want to lose my ability to move, so I keep going.” Walk MS: Fort Worth participant Gayla Bolin from Sanger

“When I was in the third grade, my teacher, Ms. Hendersen, was a very headstrong person who was not letting this disease hold her back. She inspired me, taught me valuable life lessons and became a close friend to my family. What better way to say thanks to one of the biggest inspirations in my life.” BP MS 150 participant Ryan Tucker from Houston

“I was diagnosed in June 2008. I have been active in sports all my life and even had a large portion of my college education paid for with a baseball scholarship. I can no longer participate in activities that require the ability to run. I do not want anyone else to experience the effects of MS.”

“In May 2010, at 52 years old, I was diagnosed with MS. I have been a volunteer and riding for many years. Last count was 23 rides, counting Houston, San Antonio and Dallas. Ironic that I would get the disease that I have spent the most time working and riding for. I ride for people like myself that live with the fear that all they have loved in fitness and health may disappear slowly or quickly. Living with the fear of not knowing is the face of MS daily.” BP MS 150 participant and EMS Bike Support member Vicki Williams from Katy

“MS has affected my life in a hopeful way through my friend’s positive response to her own diagnosis, shown through her determination and good humor as a participant and supporter. I have a strong, hopeful perception for those who have MS because of my dear friend’s optimism, joy and inviting enthusiasm.” Bike MS: Sam’s Club participant Sara Jordan from Huntsville

Walk MS: Dallas participant Jason Grimmer from Melissa

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Inspiring Others “I’ve been running 5Ks since Fall 2010 and was overjoyed to finish my first 5K near the top of my age group. I’m still working toward my goal of placing first. I wanted to continue to run so I could inspire others with MS, not to become runners, but to chase their dreams and goals despite having MS.” Walk MS: Dallas participant Michelle Clos from Dallas

“My mother was diagnosed eight years ago. I am repaying her for all the years she has helped me and always been there.” Walk MS: Fort Worth participant Kimber Huseman from Saginaw

“My dad was diagnosed in November 2010. I refuse to let this disease get the best of my dad or our family. Until there’s a cure, I’ll keep researching, talking to others for support and stay strong.” Walk MS: Fort Worth participant Melissa Davis from Granbury

“I walk for my son Bryce who was diagnosed Aug. 13, 2008 at the age of 13. I believe the only way to battle this disease is with money for research.” Walk MS: Fort Worth participant Tracy Penley from Azle

“I’m doing the walk because I can still walk and many others can’t. That keeps me motivated to continue.” Walk MS: San Antonio participant Ben Cooper from San Antonio

“I want everyone to see someone that was knocked down in the dirt. I could not move and was in a wheelchair, going through every symptom imaginable, and now I am walking and getting my life back. If you look at me today compared to three years ago, you would have never believed where I am at today. You look at me and you would almost never know or guess that I have MS.” Walk MS: Amarillo participant Heath Henderson from Heath

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Motivation to Dance “My motivation is being able to dance with my sons at their weddings. I want to be able to walk and be active for them as long as I can. The more money that is spent on research, the more likely my goal will be attained.” Walk MS: Dallas participant Kelli Hofeldt from McKinney

“It’s really about my mom. She was diagnosed when she was younger than I am now. I know that if she didn’t have MS, she would probably have done the BP MS 150 herself. I want to honor the mental strength my mom has shown.” BP MS 150 participant and Team KPMG cyclist Donna Settle from Katy

“A year ago at this time, I weighed 360 and was having difficult climbing the stairs to put my kids to bed. I’ve now lost 140 pounds and weigh 220. I’m in the best shape of my life. One way I’m keeping the weight off is by riding. It’s a great way to do something for the community as well as myself.” BP MS 150 participant and Team Shell cyclist Kevin Anselmo from Kingwood

“MS has really shown me a whole new way to view life. I used to worry about how to ‘beat the Jones.’ But when I was told ‘you have multiple sclerosis,’ my eyes opened up to the true importance in life, my three Fs: faith, family and friends.”

“Since the diagnosis, I’ve learned not to take any day for granted, and to live and love to the best of my ability each and every day.” Walk MS: Dallas participant Stephanie Dixon from Ennis

“When I was diagnosed, it made me stronger. It has made me fight and I’m not giving up.” Walk MS: Dallas participant Kimberly Kirby from Denton

“What inspires me to walk? Maybe one day I won’t have to take a shot every other day because, by me walking and raising funds, I will help find a cure.” Walk MS: Amarillo participant Stephanie Koehn from Dalhart

To learn more about Bike MS events around Texas – which also include the Bike MS: Cactus and Crude ride in Midland, the Bike MS: Wild West ride in Amarillo and San Antonio’s Bike MS: Alamo Ride to the River – and across the United States, visit bikeMS.org. To find a spring or fall Walk MS near you, check out walkMStexas.org.

Walk MS: Amarillo participant Barbara Hatchel from Amarillo

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Entrepreneurial Spirit Fast Forwards Exercise DVDs by Claire Lindsay Editor’s note: The following is made possible through the Society’s local MS Entrepreneurs program, provided through the vision and support of Kanaly Trust. If you have an idea that will help people living with MS, you can apply year-round for an MS Entrepreneurs grant. Details and applications are available online at MSentrepreneurs.org.

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ne evening in February 2006, the whole right side of my body fell asleep. The numbness on the right side made walking a challenge since I had no idea where my right foot was going and my balance was way off. I was admitted to the hospital and was diagnosed with MS after an MRI picked up two small white matter lesions. When I got better and started doing research on how to minimize the symptoms of MS, I read articles on the benefits of yoga. I started taking a class at my gym and I felt it made a positive difference in my body and balance. Fast forward two years later: I applied for the MS Entrepreneur program to bring a gentle exercise program to the MS community. Luckily, I was a grant recipient and OliveFit was born. OliveFit provides DVDs of gentle exercise that can be done in a chair or on an exercise mat in the comfort of your own home. I thought DVDs would be good medium for people with MS; because fatigue and heat sensitivity are common symptoms, anyone with MS can do the DVD routines when you have more energy and can set the thermostat at a good temperature. I hope you find the routines as fun, motivating and beneficial as I have, and start having less muscle spasticity, reduced stress, more energy, better balance and, overall, generally feeling pretty good.

Claire Lindsay is an MS Entrepreneur in The Woodlands. Visit olivefit.org for more information on OliveFit, to order DVDs and to sign up for the free OliveFit newsletter.

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Texans Love a Good Party! R

oaring good times were in store across the Lone Star State at the biggest get-togethers of the year for persons living with MS. Hundreds of individuals with MS and their families attended the Society’s recent MS Socials in San Antonio, Dallas-Fort Worth, Houston and Austin. Society staffers and volunteers teamed up to coordinate and host these annual events, which have

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become the social highlights of the year for many. Guests enjoyed plenty of tasty dishes, movin’ and groovin’ entertainment, creative activities for the kids and a bounty of prize drawings for lucky winners. Each social had a special theme, such as the fanciful magic and fantasy motif for the Houston gala and the roaring ’20s flavor of the Austin event.

Houstonian Jim Mills Named 2011 Person on the Move T

he Houstonian’s Jim Mills has to find room for a new award. Mills, the general manager at the renowned The Houstonian Hotel, was honored as 2011 Person on the Move by the National MS Society. The award – presented during the Houston On the Move Luncheon in March – recognizes an individual’s outstanding commitment to the Society’s mission to help everyone affected by multiple sclerosis. Mills joined The Houstonian as executive chef in 1995, advancing to hotel manager in 2002 and general manager in 2005. He leads a team of 240 staffers who provide for all aspects of the guest and employment experience. As a member of The Houstonian Hammerheads cycling team, Mills has ridden in the Society’s annual 180-mile Houston-to-Austin BP MS 150 fundraising ride for several years. He has been a top fundraiser for more than six years, raising crucial funds to advance breakthrough MS research and

programs. In addition to his commitment to the Society’s mission, Mills is active in community service with a focus on the areas of hunger and food insecurity. He was a long-time board member and past board chairman of End Hunger Network; it merged with Houston Food Bank in 2008 and Mills now serves on its board. He has volunteered for many years with Share Our Strength (SOS) and served 10 years on the local committee of its Taste of the Nation event, held annually at The Houstonian. Mills is Immediate Past Chairman of the Hotel and Lodging Association of Greater Houston and is a board member of the Texas Hotel and Lodging Association. He also serves as board chairman of the Greater Houston Convention and Visitor’s Bureau. The University of Texas at Austin graduate and his wife, Robbin, have been married for more than 25 years, and have two sons, Bob, 21, and John, 17.

MS Eye CARE Honored as Company on the Move In March, the Society recognized MS Eye CARE as its 2011 Company on the Move. At the University of Houston-based Multiple Sclerosis Eye Center for Analysis, Research and Education – or MS Eye CARE, for short – clinicians and researchers use state-of-the-art visual technology to look for abnormalities in optic nerve fibers that would indicate a high index of suspicion for an MS diagnosis. Many MS patients experience their first attacks in the optic nerve, causing spotty or blurry vision, as well as temporary or permanent loss of sight.

The center, which opened in 2005, is co-directed by neuro-ophthalmologists Rosa Tang, M.D., MPH, MBA, FAAO, a board-certified ophthalmologist, and Jade Schiffman, M.D., FAAN, FAAO, a board-certified neurologist and ophthalmologist and full-time professor at M.D. Anderson Cancer Center. MS Eye CARE is a joint effort between the University of Houston College of Optometry and the National MS Society. Information can be found on the University of Houston College of Optometry site at www.opt.uh.edu (type “MS Eye CARE” in the search box).

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Get Moving with Wellness Classes Near You

Wellness is a dynamic state of physical, emotional, spiritual and social well-being that can be achieved even in the presence of a chronic illness or disability. Studies show that moderate aerobic exercise improves cardiac health, stamina and mood, and helps manage symptoms like fatigue, weakness, and bladder and bowel difficulties. Stretching exercises – whether done on your own or with a helper – can relieve stiffness and improve your flexibility and mobility. The National MS Society provides programs to

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promote wellness of mind, body and spirit. Listed classes are free unless otherwise noted. Always talk to your doctor before starting a new exercise program. Note: The following information is current as this issue went to print. To ensure class details have not changed, use the class contacts listed below. View full class details and current class listings online by visiting JointheMovementLoneStar.org, clicking “Programs and Services” in the left-hand navigation, then “Wellness and Exercise.”

Aquatics

Water aerobics classes are designed with special attention to stretching, toning and strengthening, including balance exercises, either on land or in water. Classes are performed in waist-deep water, utilizing slow, deep breathing and a wide range of movements to give a feeling of control, balance and coordination. Aquatics classes can help decrease spasticity, increase range of motion and improve gait. If not independent on land, you must provide a support person to assist you into the pool. ABILENE Abilene YMCA 3250 State St. Abilene, TX 79603

Mon/Wed 5:30 - 6:30 p.m. Thursday 6:30 - 7:30 p.m.

325-677-8144

ARLINGTON Arlington YMCA 7120 S. Cooper St. Arlington, TX 76001

Tues/Thurs 11:15 a.m. - 12:15 p.m.

817-419-9629 To reserve a spot in class, call Erin Fogarty at 800-686-7415.

DALLAS - Aquatics for People with MS Pearce High School Noratorium Mon/Wed/Fri 1600 N. Coit Road 9:30 - 10:30 a.m. Richardson, TX 75080 DALLAS - Multiple Sclerosis Aquatic Exercise Program Texas Health Presbyterian Hospital Mon/Wed/Fri Dallas Finley Ewing Cardiovascular 11 - 11:45 a.m. and Fitness Center 5721 Phoenix Drive Dallas, TX 75231

Contact The Richardson Senior Center at 972-744-7800.

To reserve a spot, call Marianna Clement at 214-345-4512.

KELLER Keller ISD Natatorium 1000 Bear Creek Parkway Keller, TX 76248

Mon/Wed/Fri 11 a.m. - noon

817-744-1350 To reserve your spot, call Erin Fogarty at 800-686-7415.

MIDLAND COM Aquatics 3003 North A St. Midland, TX 79705

Tues/Thurs 12:15-1 p.m.

Cost is $10 per month. Contact Gail at 806-468-8005 x22.

NEW BRAUNFELS - Wet ‘n’ Well YMCA 710 Landa St. New Braunfels, TX 78130

Wednesday 11:30 a.m. - 12:30 p.m.

Contact Rana Russell at 830-643-0376.

WACO Waco Family YMCA 6800 Harvey St. Waco, TX 76710

Tues/Thurs 9-10 a.m., 6:30-7:30 p.m.

Contact Chris Bernard at chris.bernard@ymcaofcentraltexas. org or call 254-776-6612 to reserve a spot.

WICHITA FALLS North Texas Rehab Center 1005 Midwestern Parkway Wichita Falls, TX 76302

Tues/Thurs 2 - 3 p.m.

940-332-0771

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Art Therapy

Discover the healing power of art in these award-winning outreach programs. Students explore various techniques in different media. These soothing classes are open to all persons with MS. Partial funding for this program is provided by the National MS Society and the Art Colony Association. HOUSTON - Healing Art Art League Houston 1953 Montrose Blvd. Houston, TX 77006

Friday 10 a.m. - 12:30 p.m.

HOUSTON - Physically Challenged Healing Art Art League Houston Wednesday 1 - 4 p.m. 1953 Montrose Blvd. Houston, TX 77006

713-523-9530

713-523-9530

Pilates

Pilates is a gentle, yet effective, form of exercise for all fitness levels and abilities. Exercises are nonimpact and non-weight bearing, and strengthen core muscles, improving overall body stability.

ROUND ROCK - Fitness Pilates MS Clinic of Central Texas 16040 Park Valley Drive, B-100 Round Rock, TX 78681

Tue/Thurs 5:30 - 6:30 p.m.

DALLAS - Fitness Pilates for Multiple Sclerosis Movie Studio Saturday Preston Campbell Center 1 - 2 p.m. 17062 Preston Road, Ste 108 Dallas, TX 75248

Call Mary Holder at 512-569-5955. (Clinic phone is 512-248-8663.)

Contact Maureen Tarantino at motarantino@grandecom.net or 214-924-0914.

Sit’n’Fit

Sit ‘n’ Fit is a seated, creative movement program that focuses on light aerobics. Exercises are done from a seated position, either in a chair or wheelchair. Focus is placed on individual abilities, allowing participants to work at their own levels, abilities and pace. CARROLLTON - Seated Aerobics Sandunga Dance Studio 2155 Marsh Lane Carrollton, TX 75006

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First Thursday 12:30 - 1:30 p.m.

Call Erica Sutton at 1-800-686-7415.

Pi-Yo

This class is a combination of Pilates and yoga for exercisers with mobility limitations. It is also suitable for those who prefer sitting or using a wheelchair.

DALLAS - Seated Pi-Yo Movie Studio Preston Campbell Center 17062 Preston Road, Ste. 108 Dallas, TX 75248

Tuesday 1 - 2 p.m.

Contact Maureen Tarantino at motarantino@grandecom.net or 214924-0914.

Physical Training

Each physical training session includes stretching exercises, lightweight resistance training and breathing techniques under the direction of a certified personal trainer.

FORT WORTH - Assisted Physical Training National MS Society Tue/Thurs - Times vary 4086 Sandshell Drive Fort Worth, TX 76137 DALLAS - Assisted Physical Training National MS Society 2105 Luna Road, Suite 390 Carrollton, TX 75006

Wed - Times vary

Private evaluation necessary for registration. Schedule an appointment by calling Travis Ehrhardt at 214-315-6127. Private evaluation necessary for registration. Call Travis Ehrhardt at 214-315-6127.

Silver Sneakers

Silver Sneakers uses a variety of exercises designed to increase muscular strength, range of motion and activity for daily living skills. This class is appropriate for individuals who may use a wheelchair fulltime.

TEXARKANA - Silver Sneakers I St. Michael Health & Fitness Center 2223 Galleria Oaks Drive Texarkana, TX 75503

Tue/Thurs 2 - 2:45 p.m.

RSVP: Call the Health & Fitness Center at 903-614-4441 to reserve your spot.

TEXARKANA - Silver Sneakers II St. Michael Health & Fitness Center 2223 Galleria Oaks Drive Texarkana, TX 75503

Mon/Wed 2 - 2:45 p.m.

RSVP: Call the Health & Fitness Center at 903-614-4441 to reserve your spot.

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Therapeutic Horseback Riding

Therapeutic horseback riding has been shown to enhance overall functional activity for people with disabilities. This program is beneficial for people with MS who have limited mobility, those working to improve balance and muscle coordination, and persons who have enough trunk control to support oneself sitting independently, but who would like to increase core muscle strength. Read a profile of Marlys Picinich, a participant in the therapeutic horseback riding program, in this issue of MSConnection. CLEBURNE - Dallas/Fort Worth Area Wings of Hope Equitherapy 4200 CR 806 Cleburne, TX 76031 CORINTH - Dallas/Fort Worth Area Spirit Horse Theraputic Center 1960 Post Oak Drive Corinth, TX 76210

Thursday 12:15 – 1 p.m. or 1 – 1:45 p.m.

To reserve your spot, contact Julie Rivard at Wings of Hope at 817-7908810.

Monday 9 - 11 a.m.

Contact Spirit Horse Therapeutic Center at 940-497-2946.

Yoga

Proven effective for persons with MS, yoga can improve balance, range of motion, flexibility and more. For yoga classes, each participant must bring a yoga mat, towel or blanket.

AUSTIN - Chair Yoga Class Dittmar Recreation Center 1009 W. Dittmar Road Austin, TX 78745

Mon/Wed 1 - 2 p.m.

512-712-4451

AUSTIN St. David’s at Hancock Center 1000 E. 41st St., Bldg O Suite 925 - Therapy Gym Austin, TX 78751

Friday Noon - 1 p.m.

To reserve your spot, contact Rikki Dunn at 512-261-0125 or rikidunn@ webtv.net. Cost: $25 per month.

BROWNSVILLE South Texas Rehabilitation Hospital 425 East Alton Gloor Blvd. Brownsville, TX 78256

Tuesday 5:30 - 6:30 p.m.

Call Lupita Fulghum at 956-5546000.

CORPUS CHRISTI YWCA of Corpus Christi 4601 Corona, Ste. 2303 Corpus Christi, TX 78411

Thursday 2 p.m.

Call Mary Carpenter at 361-813-1763.

GARLAND - Adaptive Yoga for People with Disabilities Yoga Synergy Spa Thursday - 11 a.m. (inside Firewheel Town Center) (March 3-April 7) 125 Cedar Sage Drive Garland, TX 75040

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Call Amber Kocian at 972-904-2222. Cost for this six-week series is $65. Pre-registration required at YogaSynergySpa.com.

HOUSTON - Adaptive Yoga for MS National MS Society 8111 N. Stadium Drive, Ste. 100 Houston, TX 77054

Thursday 6:30 - 8 p.m.

Call Lissa Giacco at 713-394-2928.

HOUSTON - Seated Yoga National MS Society 8111 N. Stadium Drive, Ste. 100 Houston, TX 77054

3rd Tuesday 10 - 11 a.m.

Call Lissa Giacco at 713-394-2928.

McALLEN First United Methodist Church Keystone Room 4200 North McColl McAllen, TX 78504

Tuesday 6:30 - 7:30 p.m.

Call Annette De Leon at 956-5341191.

PEARLAND - Adaptive Yoga for MS Westside Events Center 2150 Country Place Pkwy. Pearland, TX 77581

Saturday 10 a.m. - noon

Call Lissa Giacco at 713-394-2928.

ROUND ROCK - Yoga for Individuals with MS or Mobility Challenges Grace Lutheran Church Friday 708 Bluff Drive 10 a.m. Round Rock, TX 78681

Call Rocio Morales at 512-255-8109. Cost is $40 per month.

ROUND ROCK - Gentle Yoga MS Clinic of Central Texas 16040 Park Valley Drive, B-100 Round Rock, TX 78681

Call Mary Holder at 512-569-5955 or ctnc_pilates@yahoo.com.

Wednesday 10:45 a.m.

SAN ANTONIO / LIVE OAK - MS Yoga Journey Northeast Methodist Hospital Monday CHC Room 7 p.m. 12412 Judson Road San Antonio, TX 78233

Contact Jan Mayulianos at 210-659-8803. New students must call ahead to verify class dates and location.

SAN ANTONIO - Adaptive Yoga for MS MS Center of South Texas - NISA Monday 3603 Paesanos Pkwy., Ste. 300 6 p.m. San Antonio, TX 78231

To reserve your spot in the class, contact Janet Kaufman at 210-6921245.

SAN ANTONIO - Gentle Yoga St. Mark’s United Methodist Church Office Entrance 1902 Vance Jackson San Antonio, TX 78213 SOUTHLAKE - Divine Yoga Divine Center of Yoga 3280 W. Southlake Blvd. Southlake, TX 76092

Wednesday 1 - 2:30 p.m.

Call Lissa Giacco at 713-394-2928.

Tue/Thurs/Sat 12:15 - 1:15 p.m.

Call 817-431-9642. Arrive 15 minutes early for your first class.

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STEPHENVILLE - Adaptive Yoga for MS Countryside Wellness Center 2nd Tuesday 515 W. Lingleville Road 6 - 7 p.m. Stephenville, TX 76401

Contact Janie Portele at yoga@ourtown.com or 254-968-8917.

TEXARKANA - Beginners Yoga Christus St. Michael Health & Fitness Center 2223 Galleria Oaks Drive Texarkana, TX 75503

Tuesday 9:30-10:25 a.m. Thursday 9:30-10:25 a.m.

RSVP: Contact the Health & Fitness Center at 903-614-4441 to reserve your spot.

TEXARKANA - Hatha Yoga Christus St. Michael Health & Fitness Center 2223 Galleria Oaks Drive Texarkana, TX 75503

Monday 8:45-9:40 a.m. Tuesday 5:30-6:25 p.m. Wednesday 8:30-9:25 a.m. Thursday 5:30-6:25 p.m.

Contact the Health & Fitness Center at 903-614-4441 to reserve your spot.

Monday 1 - 2 p.m.

Call Lissa Giacco at 713-394-2928.

THE WOODLANDS YMCA - South Montgomery County 6145 Shadowbend Place The Woodlands, Texas 77381

Go For A

STROLL

Registration is open for 2011 Walk MS events throughout the Lone Star State. Visit walkMStexas.org to sign up for a walk near you.

walkMStexas.org

or

Get On A

ROLL

Saddle up for a Bike MS trek throughTexas. Find out how to participate, volunteer or donate by visiting bikeMStexas.org.

bikeMStexas.org

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Call, Listen and Live Better with Society’s Monthly Teleconferences

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earn about topics that affect your life from the comfort of your home with the National MS Society’s monthly teleconference series. Each teleconference is free and begins at 7 p.m. Central on the second Wednesday of each month. To register for a teleconference, call 1-800-344-4867 (press 1 when asked). Upcoming teleconferences for April – July 2011 are:

Mood, Cognition and Memory April 13, 2011 In April’s teleconference, get helpful, practical tips on how to better cope with mood, cognition and memory symptoms. You’ll also learn more about treatment options that could help you. MS 101 May 11, 2011 In May’s session, the Society will provide a comprehensive MS overview for people who are newly diagnosed. This teleconference is helpful for anyone who is newly diagnosed, their friends and family members. Managing Transitions June 8, 2011 MS can throw daily challenges your way in the form of new symptoms, employment issues, altering family dynamics and more. In June’s teleconference, you’ll learn to adjust, cope and adapt to change; discuss emotional responses like grief and loss; and discover resources to help you through these various transitions. Research and What It Means for You July 13, 2011 Coming up in July, we’re looking ahead to the future. Call in to learn about exciting new MS research and what it could mean for you and your loved ones.

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Society Recaps High-Impact Research Progress From National MS Society reports

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xciting progress was made in 2010 in every field of MS research, including new therapies, ways to restore function, improved quality of life and better understanding of MS-influencing factors. The National MS Society continues to propel research forward with a comprehensive research strategy and program. In 2010, the Society provided $36 million to support 325 new and ongoing projects. In addition, thanks to the efforts of MS activists, $4.5 million was set aside for funding MS research out of the 2010 Department of Defense budget. Here is a sample of important, potentially highimpact research results that occurred in 2010. Progress toward Finding Better Therapies for MS * Gilenya (Novartis International AG) capsules were approved by the Food and Drug Administration (FDA) for reducing the frequency of clinical relapses and delaying the accumulation of physical disability in relapsing forms of MS, making it the first oral disease-modifying therapy for the treatment of multiple sclerosis. Cleveland Clinic doctors voted this among the top 10 medical breakthroughs of the year. * Positive results from the phase III trial of oral cladribine (EMD Serono) showed that it reduced relapse rates compared to placebo by up to 57.6 percent in a study involving 1,326 people with relapsing-remitting MS. Additional studies are

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underway and the company has applied to the FDA for marketing approval. * Teriflunomide is a novel oral compound that inhibits the function of specific immune cells. Results from a two-year, phase III trial in people with relapsing MS, comparing two doses against placebo, showed that both doses significantly reduced the rate of MS relapses by up to 31.5 percent relative to placebo; the higher dose was found to reduce the risk of disability progression by 29.8 percent compared to placebo. MRI scanning showed reduced risk of new MS lesions and reduced disease activity. * In a study supported by the Society, the Department of Veterans Affairs and others, researchers at the Oregon Health and Science University in Portland investigated lipoic acid, an antioxidant that previous studies suggest can benefit mice with MS-like disease, in part by inhibiting immune cells from entering the brain. In a lab model of acute optic neuritis, they found that lipoic acid could reduce damage to myelin and to nerve fibers, and also reduced inflammation. This group is planning more research to determine whether lipoic acid may provide benefits for people with MS. * More than $2.4 million was committed by the National MS Society and the MS Society of Canada to support seven grants on chronic

cerebrospinal venous insufficiency (CCSVI) to determine its role in the MS disease process. The applications underwent a rigorous expedited review process by an international panel of experts. The studies, launched July 1, were deemed necessary because it is not known yet whether, or if so how, CCSVI contributes to MS disease activity. * Published results of the phase II CHOICE study – in which 230 people with relapsing MS taking interferon beta and having disease activity were administered one of two doses of daclizumab (Biogen Idec and Abbott) or placebo – showed that the higher dose reduced disease activity on MRI scans by 72 percent and the lower dose by 25 percent. Phase III studies of this immune modulator are underway. * At least two small clinical trials are currently underway – one at the University of Wisconsin supported with Society funding – testing the idea that infection with intestinal parasites may reduce immune attacks in MS. This relates to the “hygiene hypothesis,” the idea that MS may be less common in underdeveloped regions because early exposure to common infections stimulates immune responses that help offset the attack on the brain and spinal cord in MS. * In a study of more than 5,000 people with MS, researchers identified characteristics that may help predict the rate of disease progression. Motor symptoms at onset, such as muscle stiffness, and male gender were associated with a faster progression from relapsing-remitting MS to secondary-progressive MS. * Two published studies strengthened the idea that neuromyelitis optica (NMO), a disease closely related to MS, is an autoimmune disease that targets one or more specific proteins in the brain, and provided a rationale for new treatment approaches that could also have implications for treating MS.

* A provocative study by investigators at the University of Sydney suggested that the earliest activity seen in the brain in MS is the destruction of cells that make myelin (oligodendrocytes), occurring before the onset of immune activity usually blamed for triggering the disease. This study opens up new possibilities for finding the cause of the disease and developing new treatments. * The Society’s annual listing of Clinical Trials in MS – featuring ongoing MS trials, as well as those that are being planned or that have been recently completed – listed 129 studies, including studies of oral therapies for treating MS or its symptoms; novel agents, such as green tea extracts; and a study of the antioxidant idebenone in people with primary-progressive MS. Progress toward Restoring Function * Researchers have identified a molecule that appears to stimulate the brain’s natural ability to repair myelin in rodents. Myelin is the insulating coating on nerve fibers that is damaged in MS. The finding, which needs further research to translate to human disease, resulted from a massive high-tech screening system to identify new strategies to repair nervous system damage in MS. * The FDA approved the marketing of Ampyra (dalfampridine, formerly known as fampridine SR, from Acorda Therapeutics) for its ability to improve walking in people with any type of multiple sclerosis. This is the first therapy specifically approved to treat a symptom of MS, representing a big step forward for many people who may benefit. * The first drug specifically developed to treat uncontrollable laughing or crying, also called pseudobulbar affect (PBA), was approved by the FDA. Nuedexta is an oral therapy shown to significantly reduce episodes in people with MS, ALS and other disorders. Moving Toward A World Free of MS

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* A University of California at Los Angeles team funded by the Society found that depression is linked to brain volume loss in specific sub-regions of the hippocampus, an area of the brain known to be important in memory. Tissue loss in this area also was linked with abnormal secretion patterns of the stress-related hormone cortisol. The results warrant further study, but are an important clue to a symptom that can interfere greatly with the quality of life of people with MS. * The largest study of its kind showed that mindfulness-based meditation significantly improved health-related quality of life, depression and fatigue in a study involving people with relapsing-remitting and secondary-progressive MS. This controlled study showed the value of an alternative treatment and highlighted the importance of focusing on quality of life issues to improve well-being. * Investigators at the University of California at Los Angeles, with a Health Care Delivery and Policy contract from the Society, explored how to measure quality MS health care to establish better standards of care for people with MS. The most highly-rated indicators were appropriateness and timeliness of the diagnostic work-up, bladder dysfunction, cognition dysfunction, depression, disease-modifying agent use, fatigue, and spasticity. These will be further explored to help clinicians and health care systems in evaluating the quality of the MS care they provide. * To evaluate sleep disorders and fatigue in people with MS, investigators used polysomnography, a diagnostic tool used in sleep medicine. They found that 25 of 26 people reporting higher levels of fatigue actually had sleep disorders, such as insomnia, restless legs syndrome or sleep apnea. Twelve had two different sleep disorders. The investigators urged health care professionals treating people with MS to evaluate fatigued patients for the presence of sleep disorders, which are likely to improve with the appropriate treatments.

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* Clues from a series of basic experiments have propelled a leap forward that has implications for new strategies to treat MS. An international team from Mount Sinai School of Medicine in New York, Singapore Immunology Network and others traced the developmental origins of microglia, which are the only immune/inflammatory cells resident in the brain. Microglia are suspected to play a role in either causing or even repairing lesions in MS. They were found to develop completely apart from all other immune cells and remain a separate population throughout life. This finding will focus attention on microglia, leading toward new treatment strategies to inhibit injury and promote repair in the central nervous system. Progress toward Ending MS Forever * Two studies added to evidence for a possible role for Epstein-Barr virus (EBV) in the development of MS. In one, Harvard School of Public Health investigators showed that an EBV-positive blood test preceded MS diagnosis in a large sample of MS cases identified through U.S. military databases. In another, an international team reported that reactions to a specific protein associated with EBV were increased in people with MS compared with siblings who did not have MS. * Harvard School of Public Health researchers showed that two individual factors that were previously identified as increasing the likelihood of developing MS – exposure to Epstein-Barr virus and tobacco smoking – may interact and multiply to substantially increase the risk of developing MS in those with both risk factors. The results warrant confirmation in further studies. * MRI-detected MS disease activity was increased two to three times during the months of March to August compared with other times of the year, reported researchers at Harvard’s Brigham and Women’s Hospital in Boston. These increases correlated with warmer temperature and increased solar radiation levels. The study

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Pediatric Centers of Excellence Publish Findings on Children with MS

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esearchers from the Network of Pediatric MS Centers of Excellence established by the National Multiple Sclerosis Society have published new findings on MS in children and adolescents. The Society has been funding the sites for the past five years, as part of its Promise: 2010 campaign. There is no disease-modifying therapy specifically approved for children who have MS, so gathering and sharing treatment experience is an important task of the centers. E. Ann Yeh, M.D., with State University of New York in Buffalo and colleagues at all six centers reviewed the records of 258 children with MS who had been treated with disease-modifying therapies. Of these children, 144 (58 percent) stayed on their first therapy, 65 (25.2 percent) were switched to one other therapy, 29 (11.2 percent) were switched twice and 20 (7.8 percent) were switched three times. Most switched to other first-line disease-modifying drugs such as interferons or glatiramer acetate. In 55 children (21.3 percent), however, treatments included corticosteroids, mitoxantrone, cyclophosphamide, natalizumab or daclizumab. Investigators noted that Hispanic children were significantly more likely to experience “breakthrough” disease activity while receiving first-line, disease-modifying therapies. The authors highlighted the relatively frequent use of second-line therapies and noted that the long-

term safety of these is not yet known in children. They acknowledged the study’s limitations; a retrospective review may not capture all of the relapses that occurred, or what socioeconomic factors might be associated with disease activity or treatment choices. They concluded that further studies should evaluate the safety and effectiveness of MS drugs in children, as well as the mechanisms – socioeconomic, psychological or biological – that contribute to breakthrough disease activity. While the initial grants to the Pediatric Network Centers of Excellence are soon ending, there is funding for the next two years to support a data coordination and analysis center so the network can continue to collect data and study pediatric MS and related disorders. During the past five years, the network has published two original research papers and many review papers. Additionally, there have been more than 150 papers, posters and presentations made by network sites on pediatric MS, and network members are the lead authors of a textbook on pediatric MS that will be available in 2011 from Cambridge Press. They and the Society are working to leverage this collaboration and data collection into continued care and further research to benefit children and adolescents with MS.

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highlighted the influence of environmental factors on MS and also suggested that seasonal variations should be accounted for in future clinical trials. * Understanding how a person’s genes make him or her susceptible to developing MS will go far toward finding ways to prevent multiple sclerosis. Investigators at the University of Boulder described a new Web site – MSgene.org – launched by the International MS Genetics Consortium that summarizes more

than 800 MS gene association studies. The strongest associations appear to be exerted by immune system genes. This collection can help to prioritize future genetic studies. These and many other efforts by researchers around the world reflect the rapid pace of MS research today. For more research updates, visit the Society online at nationalMSsociety.org.

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Nerve Repair Teams Report ‘Remarkable’ Results From National MS Society reports

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cure for MS means not just stopping and ending the disease, but repairing damage and restoring lost function. The Nervous System Repair and Protection Initiative, funded through the National MS Society’s Promise: 2010 Campaign, was launched in 2005 to address what was then an under-explored area. This bold initiative involved the largest grants ever offered by the Society and set the stage for translating basic lab discoveries into clinical efforts to restore nerve function in people with MS. The results have been impressive: it jump-started the field, trained scores of promising young investigators, produced more than 150 research papers and leveraged millions of dollars in new funding. “It’s remarkable,” said Timothy Coetzee, Ph.D., Chief Research Officer of the Society. “We launched this initiative to set the stage for clinical trials of neuroprotection in MS and, five years later, we are seeing these studies come to life.” What repair and protection mean During the course of MS, the immune system attacks the brain and spinal cord. Nerve cells have wires, or axons, that allow them to send and receive signals. Axons have a coating on them called myelin – like insulation on a wire – which speeds nerve conduction. Myelin is a main target in MS, but axons are also damaged. Damage to axons is probably what causes progressive disability or worsening in people with MS. The focus of protection efforts is to stop the destruction of myelin and axons; the focus of repair efforts is to restore those tissues. Drs. Peter Calabresi with Johns Hopkins University in Baltimore, Ian D. Duncan with the University of Wisconsin in Madison, Charles ffrenchConstant with the University of Edinburgh and Gavin Giovannoni at Queen Mary University of London and their teams reported on their progress in all three goals of the repair initiative with the ultimate goal of paving the way for clinical trials to protect the nervous system, repair the damage and restore function in people with MS. Goal 1: Develop new disease models to screen repair and protection techniques Teams made great strides in developing new tools to investigate myelin damage and repair. It is now possible to grow nerves and myelinmaking cells in lab dishes and explore molecular signals engaged in repair. New treatment strategies cannot be tested without therapeutic targets

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being discovered and without the development of animal models for testing safety and effectiveness before studies can begin in people. In brief: • New therapeutic targets have been identified from extensive screens of tissue culture systems, genes and proteins; early tests in rodents are promising. • There have been exciting pre-clinical breakthroughs in cell-based therapies. • A mouse model of secondary-progressive MS is established and being used to test therapeutic candidates. Investigators used the latest in “omics” technology – such as genomics, which screens multiple genes simultaneously – to identify new targets for MS therapies. Drs. Stephen P. J. Fancy and David Rowitch of the University of California at San Francisco, Robin J. M. Franklin at Cambridge University, and colleagues conducted high-tech screens to detect the activity of genes – called transcription factors – that control other genes. Among 1,040 transcription factor genes that were active in mice during the process of myelin repair, they pinpointed the “Wnt signaling pathway.” Further experiments showed that this pathway may play an important role in the failure of myelin to repair itself in people with MS. Drs. Jeffrey K. Huang at Cambridge University, ffrench-Constant, Franklin and colleagues created a “transcriptome” – a complete picture of ribonucleic acid (RNA) activity during spontaneous myelin repair. RNA is the chemical that delivers instructions from a gene to a cell. Results showed high levels of activity for the gene that controls a molecule – called retinoid acid receptor-gamma – and further study showed that this molecule appears to stimulate the brain’s natural ability to repair myelin in rodents. Investigators funded through this initiative have propelled research on cell-based therapies with groundbreaking results. Dr. Steven A. Goldman and colleagues at the University of Rochester in New York transplanted human immature myelin-making cells into mice born without myelin, resulting in widespread myelin formation and restoration of neurological deficits. Dr. Gianvito Martino and

colleagues at Italy’s San Raffaele Scientific Institute transplanted nerve stem cells into models with MS-like disease, stimulating repair and reducing inflammation. This team is nearing a phase I study of this strategy in people with MS. Dr. Duncan and colleagues studied a model where a neurological disease can be induced and resolved through spontaneous repair, restoring neurological function to normal; this model will help to understand the natural mechanisms of repair and how they translate to symptoms experienced by people with MS. In a truly exciting effort, Dr. Franklin and collaborators showed that cells from young mice could enhance myelin repair in older mice, giving new information on a possible role of aging in nervous system damage and new possibilities for inducing repair. Goal 2: Apply advanced MRI and other non-invasive monitoring tools to detect nervous system protection and repair Developing ways to measure damage and repair was another goal, with results ranging from simple tests of function to cutting-edge technology. In brief: • A simple, quick eye test has been validated as a method of showing nerve fiber damage and health. • Novel imaging technologies can detect myelin and nerve fiber damage and track it over time. • A possible biological marker of disease progression has been found in spinal fluid. • Simple functional tests may correlate with underlying disease activity and hold promise for use in clinical trials. Laura Balcer with the University of Pennsylvania, Elliott Frohman with The University of Texas Southwestern Medical Center at Dallas, and Calabresi, Lauren Talman and colleagues confirmed that optical coherence tomography (OCT) can measure the health of the nerve fibers in the back of the eye. This simple, quick method can show how much nerve fibers in the eye are damaged. Changes can be observed in people with MS, even if they don’t have eye inflammation. Drs. D.M. Harrison at Johns Hopkins University,

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Daniel Reich at the National Institutes of Health, Calabresi and colleagues showed that other novel imaging technologies – such as diffusion tensor imaging (DTI), which measures the flow of water particles in tissue, and magnetization transfer, which measures the transfer of energy particles – could specifically detect myelin and nerve fiber damage and track them over time. Drs. Sharmilee Gnanapavan at Queen Mary University and Giovannoni searched for biomarkers that would indicate tissue damage or repair via a blood or spinal fluid sample. This research has indicated several possibilities, including neurofilament, a threadlike molecule found in nerve cells that can be measured in spinal fluid. Neurofilament levels may be a good indication of whether nerve cells are being damaged and whether disease is progressing. If validated in further research, measuring neurofilament may prove to be a quick measure of whether potentially neuroprotective drugs are working, enabling faster clinical trials. Drs. Aaron Field, Andrew Alexander at the University of Wisconsin-Madison and colleagues reported on an effort to combine DTI and diffusion spectrum imaging, which enabled them to examine nerve fibers that intersect each other. The team has been able to minimize the imaging time necessary for this hybrid approach and increase its accuracy. Scientists also reported progress in using clinical tests that can assess symptoms simply, but may correlate with underlying disease activity. Drs. Kathleen M. Zackowski, Calabresi and colleagues showed that “sensorimotor” dysfunction that was picked up by testing vibration sensation and ankle strength correlated with disease activity on advanced MRI technology. Also, Dr. Balcer’s research indicates that tests of visual acuity – perception of light gray letters of progressively smaller size on a white background – correlate with OCT and other imaging results. Goal 3: Design human clinical trials of repair and protection therapies. The ultimate goal of this initiative was to lay the groundwork for clinical trials of strategies to protect and repair the nervous system.

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In brief: • Clinical trials are underway to evaluate experimental strategies for nervous system protection and repair. • New clinical trial designs and outcome measures are in development to speed up the testing of promising agents. • Collaborations are expediting and enhancing the quality of clinical research. Here is a sampling of studies that are underway or planned in collaboration with team members of this initiative: • Dr. Rowitch is conducting an industry-backed Phase I study to study the safety of neural stem cell transplantation in children born with a lack of myelin; this small, early study would also serve as a “proof of principal” for this strategy. • Dr. Raj Kapoor with London’s National Hospital for Neurology and Neurosurgery is launching a Phase II study of phenyltoin to determine its effects on neuroprotection in optic neuritis, funded by the National MS Society and the MS Society of Great Britain and Northern Ireland; the study design takes lessons learned from a failed study of lamotrigine in SP MS. Both these drugs are sodium channel blockers, drugs that enable tiny pores along nerve fibers to improve nerve impulse conduction. The value of collaboration Team leaders unanimously agreed that this collaboration has moved the field of repair in MS forward exponentially. Dr. Coetzee noted that the Society is evaluating program outcomes to determine how to sustain the momentum created by these teams: “We are going to continue to move our work forward and share it worldwide to continue to speed research to repair the nervous system in MS. The dream is stopping MS in its tracks and of restoring function that has been lost. This is topmost in the hearts and minds of people who have MS, as well as their loved ones.”

Study: Risk of First Neurologic Event Decreases with Sun Exposure and Vitamin D

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igher levels of sun exposure and higher blood levels of vitamin D were both associated with decreased risk of having a first demyelinating event that can be the first indicator of multiple sclerosis, according to a comprehensive study in Australia called the Ausimmune Study. A first demyelinating event is also known as clinically isolated syndrome (CIS), a first neurologic episode caused by inflammation/ demyelination in the brain or spinal cord. Robyn Lucas, Ph.D., and Anthony McMichael, Ph.D., with The Australian National University in Canberra and colleagues across Australia reported their findings in this study supported by the National MS Society, the National Health and Medical Research Council of Australia, the ANZ William Buckland Foundation, and MS Research Australia. In all parts of the world, MS is more common at latitudes farther from the equator and less common in areas closer to the equator. Previous studies have found evidence suggesting that higher lifetime exposure to sunlight – through which the skin makes vitamin D – and higher blood levels of vitamin D may reduce a person’s risk of developing MS. The Ausimmune Study investigated whether increased exposure to sunlight in those living closer to the equator and the resultant vitamin D may be protective against MS. The team investigated sun exposure and vitamin D levels in people who had not yet been diagnosed with MS, but who had experienced a CIS, which often, but not always, leads to a diagnosis of MS. Investigators recruited participants who were between 18 and 59 years of age, and who lived in four geographic regions of Australia between

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Nov. 1, 2003, and Dec. 31, 2006. The four regions were characterized by differing distance from the equator. A total of 216 people were enrolled who had experienced a CIS. A total of 395 controls were randomly selected and matched to the CIS cases in age, gender and study region. Sun exposure was measured in several ways, including by participant reports on how much time they spent in the sun during different periods of life starting from age 6, and also by examination of the skin for sun damage and measurements of skin pigment. The latitude and longitude of participants’ residence were also recorded as an indicator of ambient ultraviolet light. Vitamin D levels were measured by a blood sample taken at entry into the study. Results showed that higher recent or lifetime sun exposure and higher blood levels of vitamin D at study entry were independently linked with a reduced risk of CIS. Investigators reported that people with the highest levels of vitamin D at entry were less likely to have a CIS than those with the lowest levels. Taken together, differences in sun exposure, vitamin D levels and skin type accounted for a 32.4 percent increase in CIS incidence from the low to high latitude regions of Australia. The findings provide additional support for previous suggestions that sun exposure and vitamin D may help protect against developing MS. It remains to be seen whether safe and effective strategies can be developed that utilize this potential protection without the risks involved in overexposure to the sun or overdoses of vitamin D supplements, and whether these findings have relevance for individuals who already have MS.

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Research Teams Report Progress from First Six Months of CCSVI Projects

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ix-month progress reports from seven multidisciplinary teams investigating chronic cerebrospinal venous insufficiency (CCSVI) in MS indicated that they have established rigorous protocols, are successfully recruiting participants, and are on-track to evaluate and deliver important data when the two-year projects are completed. All seven studies are two years in length, but will be closely monitored while in progress to expedite clinical trials should data show they are warranted. The studies were launched July 1, 2010 with more than $2.4 million from the National MS Society and the MS Society of Canada. Owing to the significant interest in the MS community about CCSVI, the Society is providing six-month updates rather than the more standard 12-month reporting cycle. The studies employ rigorous blinding and controls designed to attain objective and comprehensive data. Full research results will be available after significantly more scans have been completed and evaluated, involving more than 1,300 people representing a spectrum of MS types, severities and durations. Jon Temme, senior vice president of research and programs for the MS Society of Canada, said, “The grants were selected for having the greatest potential to quickly and comprehensively determine the significance of CCSVI in the MS disease process. It is very encouraging to see how effectively the work has advanced among all groups.” The funded investigators, which include an integration of MS and vascular experts, reported progress in establishing their teams, putting their protocols in place, recruiting participants and beginning their studies:

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MSConnection • SPRING 2011

Dr. Jerry Wolinsky, The University of Texas Health Science Center at Houston His team applied in advance and obtained Institutional Review Board approval in the spring, and the team’s neurosonographer has received intensive training for intracranial and extracranial ultrasound scanning techniques. The team has already scanned a significant number of participants, which include people with different types of MS, people with other conditions and people with no known health problems. One challenge that Dr. Wolinsky’s team is addressing is the difficulty of recruiting non-MS control subjects who don’t have a personal interest in the purpose of the trial. The team is testing whether other imaging methods can confirm the ultrasound findings, while identifying the most reliable technique to screen for CCSVI. Dr. Brenda Banwell, The Hospital for Sick Children, Toronto, Ontario Her team received Research Ethics Board approval in the fall. The team has begun enrolling participants and studying vein abnormalities in children and teenagers with MS, and healthy controls of the same age, using non-invasive MRI measures of vein anatomy and novel measures of venous flow, as well as ultrasound. Dr. Fiona Costello, Hotchkiss Brain Institute, University of Calgary, Calgary, Alberta Her team received Research Ethics Board approval in the fall to begin recruiting a cross-section of people with MS compared to other neurological diseases and healthy volunteers. They also recruited two ultrasonography experts who have begun ultrasound scanning. Dr. Costello’s team slowed recruitment briefly to upgrade to a new 3T MRI machine – twice

as strong as standard clinical MRI – that will be used to perform MR venography scans to compare against the ultrasound tests. Dr. Aaron Field, University of Wisconsin School of Medicine and Public Health, Madison His team will be using MR venography and ultrasound techniques to investigate CCSVI in people with early and later MS, controls with other conditions and healthy volunteers. Dr. Robert Fox, Cleveland Clinic, Cleveland His team has received Institutional Review Board approval for using MR venography, ultrasound, MRI and clinical measures in people with MS or who are at risk for MS and comparison groups, and recruitment is ongoing. The team has obtained a new ultrasound machine previously used in other CCSVI studies.

used to compare with various scans in people with MS. Team members are slated to be trained using ultrasound techniques and are on-track to recruit more participants for the study. Dr. Anthony Traboulsee, UBC Hospital MS Clinic, UBC Faculty of Medicine and Dr. Katherine Knox, Saskatoon MS Clinic, University of Saskatchewan Teams at both sites received Research Ethics Board approval and have begun to recruit and scan participants. They are also using catheter venography and MR venography to investigate the prevalence of CCSVI in people with MS and controls without MS. The radiologists on the teams of Drs. Traboulsee and Knox met in February to ensure consistency of protocols across sites. Teams are on-target for accrual of recruits and completion of the study.

Dr. Carlos Torres, The Ottawa Hospital, University of Ottawa, Ontario His team obtained Research Ethics Board approval in the winter and began the first phase of scanning using MR venography in people without MS, which will be

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Spring 2011 MSConnection Lone Star