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Moving Toward A World Free of MS Summer 2010

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

Even When Texas


This Summer, You Can


Mother Nature Smiles

On Cyclists Saddling Up For Spring Bike MS Meet Our

2010 Volunteer Hall of Fame Inductees

Travel Sites

Travel This Summer Without Breaking the Bank

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 or 1-800-344-4867 to learn about ways to help manage multiple sclerosis and about

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

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

1-800-344-4867 Board of Trustees Chairman Brad Robbins Secretary Mark McLeland Treasurer Gerald Merfish Regional Executive Vice President Mark Neagli MSConnection Editor James Black © 2010 National Multiple Sclerosis Society: Lone Star

current research that may one day reveal a cure.



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.

Summer 2010 Volume 4 • Issue 2


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


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

18 Even When Texas Sizzles This Summer, You Can Keep Your Cool


Advocacy Efforts Provide Uplifting Feeling of Control


Mother Nature Smiles On Cyclists Saddling Up for Spring Bike MS



FDA Approves New MS Drug Ampyra to Improve Walking

Letter from the Editor . . . . . . . . . . . . . . . . . . . . 4 Mystery Symptoms Finally Explained by MS Diagnosis . . . . . . . . . . . . . . . . . . . . . . . . . 9 2010 Hall of Fame Inductees . . . . . . . . . . . . . 14 Travel Sites Help You See the Sights This Summer . . . . . . . . . . . . . . . . . . 21 Study Suggests Smoking and Exposure to Epstein-Barr Virus May Interact as MS Risk Factors. . . . . . . . . . . . . . . . . . . . . . . 26 Genetic Study of Twins Employs New Methods for Examining Causes of Ms . . . . . 28 Study Results Show Daclizuma Reduced Disease Activity in Relapsing MS and Reveal Novel Immune Mechanism. . . . . . . . . 30 Drinking Milk during Pregnancy May Lower Baby’s Risk of MS . . . . . . . . . . . . 32 Migraine More Common in Women With MS . . . . . . . . . . . . . . . . . . . . . . . 33 Evidence Supports Autoimmune Nature of Neuromyelitis Optica, an MS Mimic . . . . . . . . . . . . . . . . . . . . . . . . . . . 34 Closing Thoughts: Keep Moving to Support MS Research . . . . . . . . . . . . . . . . . 42

Moving Toward A World Free of MS



It’s the Season to Take a New Look at Keeping You Connected Each new summer brings a fresh season to look at how we stay connected within our communities. With that in mind, it’s time to add a refreshing new look to your MSConnection. Starting with this issue, our new format is just like you: brighter, bolder and a lot more colorful. When I first began writing and editing MSConnection several years ago, we took an informed look at really making this publication a living, evolving reflection of our greater MS community: What information would be beneficial for you? What stories could inspire you? What would get you moving? With your constructive feedback, we’ve worked to make MSConnection a publication that truly lives up to its name: a resource to help you stay connected with the MS community. We’ve focused on providing more news and fresh features you can genuinely use and share, such as updates on MS research and drugs in development, profiles on MS activism, event round-ups of happenings in your area, and personal stories from folks from all walks of life who face the daily challenges of multiple sclerosis. In this issue, for instance, you’ll learn how to keep your cool during our sizzling summer; see how Port Neches resident James Paslean makes a difference in the lives of persons with disabilities; travel with MS activist Natalie Steadman as she navigates the halls of power in Washington, D.C. to raise MS awareness; read about an exciting new MS drug in I.D. Freed’s insightful “Ask the Pharmacist” column and find out why contributor John McCool writes that “there’s no longer any unknown to fear” after his MS diagnosis. 4

MSConnection • Summer 2010


Online for the Vision Impaired It’s all part of letting our unique stories live and thrive, and another crucial way of keeping ourselves connected. As the National MS Society continues moving forward to join forces regionally across Texas, Louisiana, Arkansas, New Mexico and Oklahoma, our resolve is more united and stronger than ever to do something to help everyone living with MS now. Whether you live in a big city, like Dallas or San Antonio, or you live in a rural community, like my hometown of Atlanta, Texas, MSConnection is your news resource for staying connected. I sincerely hope you enjoy this latest evolution in sharing our stories and keeping our MS community connected. Share your feedback, pass along your thoughts and spin me your story, because a good story – as everyone knows – is always in season.

We’ve made your MSConnection even easier to view! If you’d like to read MS Connection in larger print, we’ve posted this edition – as well as an archive of past issues – online for you. Simply follow these steps:

STEP 1 Go to and click the About Us link on the left-hand side of the page.

STEP 2 Once that

James Black

MSConnection Editor National MS Society 8111 N. Stadium Drive, Ste. 100 Houston, TX 77054

page appears, click the MSConnection link to access this and prior editions.

STEP 3 To increase the size

of the viewing page on your computer, you will find a box at the top of the page with “–” and “+” signs next to it. Click the “+” button to increase text size.

Connect with Self-Help Groups Near You

The National MS Society: Lone Star’s Self-Help Groups provide opportunities for people living with multiple sclerosis, their families and friends to meet others affected by MS. Group meetings provide settings to share common experiences and concerns, network with others, give and receive emotional support, and obtain MSrelated information from peers and guest professional speakers. Self-Help Groups are facilitated by trained volunteers of the National MS Society: Lone Star. To find a Self-Help Group near you, visit JointheMovementLoneStar. org, click the Programs & Services link in the upper lefthand column, then click the link for Self-Help Groups. You can also call the Society at 1-800-344-4867 (press 2).


MSConnection • Summer 2010

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.

Sign Up for Lone Star’s Free Monthly MS E-Connection Subscribe to the free monthly MS E-Connection, providing monthly updates via e-mail on MS research, clinical trials, Lone Star programs, scheduled teleconferences and more. To sign up for free: 1. Visit and click on the green box in the right-hand column that reads “Get Lone Star News Delivered to Your Inbox” 2. Enter your preferred e-mail address 3. Check the box that reads “MS E-Connection” 4. Click the gray “Submit” box

Making Milestones in MS: Read Our New Progress Report

Find Clinical Trials in Your Area For information about clinical trials currently testing MS treatments, visit This page includes a link to trials currently seeking participants, as well as an explanation of trial phases, news of study results and more. If you do not have Internet access and need information on local clinical trials, contact the Society toll-free at 1-800-344-4867 (press 1 when asked).

“Moving Others toward a World Free of MS” is our brand-new report on our FY09 progress, highlighting personal stories, photos and milestones in research, advocacy, volunteering, fundraising, scholarships, wellness and much more. You can pick up a copy of the Milestone Report at our Lone Star offices in Austin, Corpus Christi, Dallas, Fort Worth, Houston and San Antonio. You can also download it from the Lone Star website at JointheMovementLoneStar. org; click the left-hand navigation for About Us, followed by the link for Lone Star Resources.

Make a Difference with Scholarship Fund Contributions You can make a powerful, positive difference by contributing to the National MS Society: Lone Star’s Scholarship Fund. Your donation in any amount can provide a bright

future for someone affected by MS who wants to attend college and, in turn, make a difference in the movement toward a cure for multiple sclerosis. We are actively seeking

scholarship donors and sponsors. For information on how you can contribute to a needy student’s future, contact Kristen Stubbs at

Moving Toward A World Free of MS


This Summer, Make a Difference in Someone’s Life: Volunteer The National MS Society has plenty of diverse, fulfilling volunteer opportunities. Recent volunteer postings included photographers for Walk MS and Bike MS events, MS Ambassadors, activists, volunteer recruiters, secretaries, public relations specialists and warehouse workers, to name only a few. Volunteering is great for individuals and families, as well as groups from schools, churches and companies. We need and welcome you and the many talents and skills you offer in helping others living with multiple sclerosis. For information on volunteering, visit and click the Volunteer link on the left-hand side of the page. You can also contact the National MS Society directly at 1-800-344-4867 (press 2).

WANT TO VOLUNTEER? Visit the address above and click the Volunteer link on the lefthand side of the page.

Start a Movement in Your Community with Your Own Event Across our region, volunteers, communities and businesses are sharing their time and talents to raise money and awareness to benefit everyone living with multiple sclerosis. Money raised from community – or thirdparty – events supports ongoing research initiatives into the cause, treatment and cure of MS, as well as important programs and services. Community events are volunteer-led and –supported. They can include anything from bowling tournaments and golf tourneys to bake sales and garage sales. You can learn more about staging these events in your community by downloading our 8

MSConnection • Summer 2010

Community Events Guide. This handy guide includes everything you need, such as initial ideas to get you started and key guidelines you should follow. At the end of the guide is a Community Events Application to be completed and sent to your local National MS Society Community Development Representative before you hold your event. The Community Events Guide can found online. Visit JointheMovementLoneStar. org, click Fundraising Events in the left-hand navigation bar and then select Community Events. For additional information, you can also call your local office of the National MS Society toll-free at 1-800-344-4867 (press 2).

Mystery Symptoms Finally Explained by MS Diagnosis by John H. McCool

Relief. Strangely enough, that’s what I felt when I was diagnosed with MS six months ago.


elief, because the diagnosis finally put a name to a seemingly unconnected, at times debilitating and, indeed, scary set of symptoms that my doctors and I had been trying to make sense of for more than two years. It all started in March 2007 when, at just 30 years of age, I suffered a spontaneous carotid artery dissection, or tear, leading to a stroke – from which I recovered completely. MRIs revealed the stroke’s effects on my brain but also unexplained lesions in other, unaffected parts. Where’d they come from? What’s the link to my stroke? They have to be related, right? Yet while my notoriety grew among physicians and I was a frequent “science exhibit” at teaching hospitals in my native Kansas, I was no closer to an explanation. The mystery began to deepen in July 2008 when my feet began feeling like I was wearing metal insoles. Tingling then started moving up my legs. Within a month, though, I was feeling fine again. Ignorance being bliss, I airily dismissed it all as a case of bad footwear. My doctors remained skeptical, although still as perplexed as I. All was well until exactly one year later

– July, again – when I was temporarily waylaid with bouts of dizziness and double vision. Doctors initially thought it was an inner ear infection, vestibular neuritis, and prescribed accordingly; but they demurred in doing much more since I was soon moving to Houston and getting married. (One doctor did ask my then-fiancée, very good-humoredly, whether she’d taken out a warranty on me.) Once in Houston, I was referred to Dr. Jerry Wolinsky. After running his own tests and analyzing my rather thick medical file, he revealed that what I’d actually been experiencing was relapsing-remitting flareups caused by multiple sclerosis. I had MS and I’d had it for at least two and a half years. As for the stroke, it was unrelated. Sometimes, he explained, it’s like having “measles and a broken light bulb.” At long last, it all made sense. Fortified now by knowledge, a toughness I never knew I had, the support of loved ones and excellent treatment options, there’s no longer any unknown to fear. I’m relieved that my disease has a name and I’m determined never to let it slow me down, not even in July. Moving Toward A World Free of MS



Advocacy Efforts Provide Uplifting Feeling of Control by Natalie Steadman

In March 2010, volunteers and National MS Society staff members traveled from Texas to Washington, D.C. to take part in the Society’s Annual Public Policy Conference. Natalie Steadman, a member of the Society’s Texas Government Relations Committee, shares her experience.


y journey to Washington, D. C. began more than a year ago. I was sitting in my office, reading through one of the National MS Society’s publications, and noticed an ad for the 2009 Public Policy Conference in Austin. There was something about that ad, as if it was a calling that said, “This is it; this is where you need to get involved.” Other than forwarding the occasional e-mail alert to legislators, I’ve never been an activist, but, the more I thought about 10

MSConnection • Summer 2010

it, I felt my professional experiences and background might give me the tools necessary to become one. I was diagnosed with MS five years ago and a firm believer in the statement, “If we don’t help ourselves, why should we expect others to?” I made reservations to fly to Austin and, from there, the National MS Society made it easy by providing an ideological format that educated us on how the system works.

Moving Toward A World Free of MS


Formats for the state and national meetings were similar. After arriving in Washington, D. C. on March 1, I spent the next 72 hours on a pure adrenaline rush. I had been to the capital before, but never with such a mission. The first day-anda-half was spent in meetings where we were educated on the issues we would carry forward to our legislators the next day. The primary issues were: • Boldly asking Congress to support a $15 million appropriation to the Congressionally Directed Medical Research Programs (CDMRP) for MS research; • Boldly asking for the inclusion of at least $95 million in the FY11 appropriations bill to fund lifespan respite programs and support family caregivers; • Establishing a registry to measure the incidence and prevalence of MS in the United States; and • Encouraging members to join the MS Caucus.

I was sitting in my office, reading through one of the National MS Society’s publications, and noticed an ad for the 2009 Public Policy Conference in Austin. There was something about that ad, as if it was a calling that said, “This is it; this is where you need to get involved.” 12

MSConnection • Summer 2010

After sitting in meetings all day, I needed to get outside and move; I set out running toward DuPont Circle. As I got there, I noticed a flag flying high in the distance. It was the flag on top of the White House. As close as it was, I knew I couldn’t stop until I got there. It was a dark, misty night and, surprisingly, other than the Secret Service Agents, no one else was around. I stood looking at the White House, lit like a castle. It was then that I truly developed the inspiration and courage I needed for the mission the next day. I awoke the next morning with butterflies in my stomach, but ready to meet with numerous legislators from our state. The butterflies came from knowing the importance of the mission, the stature of the people we were seeing and the realization that I was going to ask someone for $95 million for a program that could help people with MS. Our game plan was set and off we went to the Capitol. As we met individually with legislators or their staff members, we asked for their support on various issues. More importantly, we told our stories – the stories of living daily with the challenges of MS. We shared how granting support and funding for these issues gives us hope to continue living as if each day is going to be better because of the changes that could occur. As the day ended, although physically exhausted, I was emotionally exhilarated. Even though I’m 42 years old and have three college degrees, I don’t think I really understood government until this trip. It truly is about the people. Whether

it’s through meetings, letters, e-mails or phone calls, our voices are heard. As a citizen, each of us has the right to voice needs and concerns. I hope you think of it as a duty, because it’s actually a very simple process that anyone can do. I took away so many things from this trip. I met many wonderful people who I’m sure will become lifetime friends. I came away with a better understanding of the National MS Society staff and all of the things they can do for us; they are an invaluable resource for our cause. Lastly, I came away with a feeling of control.

Having a disease that leaves us feeling mostly out of control, it was nice to feel like I was running the show for a day or two.

Natalie is an Assistant Professor and Master of the Athletic Training Program at Texas Tech University Health Sciences Center. Her research interests are exercise physiology as it relates to endurance athletes, medical management of endurance events and exercise as it relates to multiple sclerosis.

Port Neches Resident’s Activism Lifts Public Access Barriers Port Neches, Texas resident James Paslean’s efforts to improve the lives of people living with disabilities have resulted in exciting, visible changes to several city landmarks. With the help of Mayor Glen Johnson and City Manager Andre Wimer, Paslean’s work has helped Port Neches become another shining example of people and resources coming together to keep those with challenges of mobility on the move. Most recently, Paslean contacted city officials about the U.S. Post Office on Port Neches Avenue. He knew that managing the post office doors was a difficult accomplishment for many people; the doors

themselves are heavy and people sometimes have to wait for help from others to enter the building. That inspiration was the beginning of collaborative work with city officials to make several public buildings more accessible for all who live in Port Neches. Paslean’s efforts led to changes for the Port Neches Post Office, the Effie and Wilton Hebert Public Library, and a nearby senior living facility. Paslean continues to be active as a volunteer in Port Neches, eagerly addressing unmet needs in the community and serving as a valuable resource for others who want to learn how to advocate for barrier-free living.

Moving Toward A World Free of MS



At the National MS Society: Lone Star Conference and Annual Meeting in January, the following people were inducted into the Lone Star Volunteer Hall of Fame.

Meet Our 2010 Volunteer





Dr. George Hutton Dr. George Hutton is a champion for all with MS. As Director of the MS Clinic at Ben Taub General Hospital in Houston and Assistant Medical Director at the Maxine Messinger MS Clinic -- to name only two of his many roles -- Dr. Hutton has profound expertise in research, education and contribution to the care of persons with MS. He has served on countless Lone Star committees; presented to local, state and international medical society meetings, Self-Help Groups and research symposiums; provided Web-based educational programs for the medical professional and patient population; and saddled up in the BP MS 150 to become a top fundraiser.

Kim & Gary Campbell; Linda Coker Sharing their voices on behalf of others are Linda Coker and Kim and Gary Campbell, who powerfully represent families living with MS. Since her diagnosis, Kim, her husband Gary and her sister Linda have all become MS activists as participants of the Austin Walk and members of its Steering Committee. They advocate tirelessly by sharing their personal stories with policymakers, giving testimony on legislative issues regarding family caregiver issues and visiting state legislators.

Dee Ryden Dee Ryden joined the movement before there was a movement. Diagnosed with MS in 1977, Dee founded and led the New Braunfels MS Support Group five years later, providing support for the newly diagnosed and their families. Dee continued to share her voice and raise MS awareness, reaching out to local, state and national officials. In 2009, Dee took the Society’s health care issues to the halls of the Capitol in Austin and to Capitol Hill in Washington, D.C.

Moving Toward A World Free of MS






Sharon Boston Sharon Boston has led her Self-Help Group in College Station for 25 years. She even wrote her master thesis on MS Self-Help Groups. Sharon keeps her Self-Help Group inviting, creative and informed by seeking out experts in her community to bring resources to her group members. She has established positive relationships with researchers at Texas A&M that help both the researchers and the group. They even get together each year for their renowned English Tea Social.

Eric Powell Eric Powell is an employee of ExxonMobil and has been a Society volunteer for 13 years. Under Eric’s leadership as Lone Star Safety Committee Chairman, the Society has consistently seen an expansion of cycling safety and rider education programs for all three Lone Star Bike MS events. Eric has also driven fundraising as a BP MS 150 participant; in the past 13 years, he has raised nearly $90,000. As captain of the 357-rider ExxonMobil team, his efforts have driven the team to raise $2.3 million in the last 13 years.

Steve High Steve High is the chairman of the Executive Committee for San Antonio’s Bike MS: Valero ride. He has been in this lead role for two years, transforming the committee from a staff-driven approach to a volunteer-guided one. Steve has made huge strides in recruiting others to ensure a variety of voices can be heard at every level. He is also a top five Bike MS fundraiser for six years in a row, raising more than $63,000 in the process.

MSConnection • Summer 2010




Nathan Denton & Steve Tries Nathan Denton and Steve Tries are the founders and organizers of the annual Movers and Shakers North Texas Golf Tournament. Since 2003, this tourney has raised almost $150,000 to benefit the National MS Society. Each year, the movers and shakers of the Dallas Metroplex – along with influential corporate partners – flock to this event that’s become a fun, eagerlyanticipated one among Society fundraisers.

Brad Robbins As a Bike MS participant, Brad Robbins began riding on the Dow Team in Houston in 1998; since then, he has raised more than $410,000 through the BP MS 150. Brad has played an integral part in helping Dow achieve fundraising success and national team status, with Bike MS teams in Houston, Detroit and West Virginia. As a charter member of the Society’s Corporate Star Program, Dow Chemical Company has raised more than $2 million in six years of participation nationally in Bike MS. Brad serves as a member of the Lone Star Board of Trustees and the National Board of Directors. Brad’s leadership also provides valuable guidance for Lone Star operations and the Society’s Regionalization Task Force.

Rana Russell Rana Russell wears many hats with the Society. Diagnosed with MS in 1995, Rana serves on the Lone Star Board of Trustees, Clinical Advisory Committee, Chapter Programs Committee, Quality of Life Task Force and Government Relations Committee. A family nurse practitioner, she works on the advocacy front through HAVA, the Accessible Voting Project and has advocated to lawmakers on disability issues. Rana is a top fundraiser, MS Ambassador, Self-Help Group Leader and instructor of an aquatics class for those living with MS.



Moving Toward A World Free of MS







When Texas


This Summer, You Can


Cool A

fter a cold and sometimes snow-covered winter across our area, things will really heat up this summer for regional residents. The scorching seasonal heat causes its own unique set of problems for everyone living with multiple sclerosis. Overheating can aggravate many MS symptoms, including increased fatigue, weakness and visual problems. This may happen when the mercury climbs on a hot summer day. It can also occur during exercise or exposure to any hot environment. Although summers throughout our region can be brutal, they don’t have to be unbearable. There are ways to ensure you keep your cool this season:

Moving Toward A World Free of MS


• Drink plenty of fluids. Cool water is the key fluid of choice. Avoid caffeine because it acts as a diuretic. • Use fans, air conditioning and even hand-held spray bottles. Air conditioners can be tax-deductible with a document from your doctor. • Exercise in a cool environment. If you typically exercise outside, pick cooler times of the day, usually early morning; you could also consider bringing your outside routine in by walking inside a local mall or joining a gym. If you exercise inside, use air conditioning or fans to help maintain your body temperature at an appropriate level. Exercising in cool water – for example, a recommended temperature of 80 – 84 degrees – is an excellent way to combat heat during physical activity; you can find available aqua therapy classes near you at under the Programs & Services link.

start; continue adding cooler water during a period of 20 – 30 minutes. Submersion of the upper body in cool water will provide the optimal benefit. • A cool bath or shower can also help reduce core body temperature following activity or exposure to a hot environment. • Wear commercial cooling garments such as vests, headbands and neckbands; be aware, however, of the added weight if you are using a cooling vest. A simple damp cloth or towel can be helpful if you don’t have one of these products. Wearing widebrimmed hats and light-colored, loose clothing can also help. • Don’t overdo it, especially when you’re outside in the heat. You know your own limits. Don’t push yourself to do more than your body can handle.

• As always, consult your doctor before you start any exercise program or have • Try pre-cooling to decrease the heating questions about your existing regimen. effects of exercise. Pre-cooling may increase the time it takes for the core Find the strategies that work best for body temperature to rise. To preyou this summer and beat the heat so it cool yourself, get into a bathtub of doesn’t beat you. cool water. The water temperature should be comfortably lukewarm to 20

MSConnection • Summer 2010

It’s time to get out and about this summer. The good news for travelers with disabilities: there are plenty of free resources available to help you plan a fun, accessible getaway.

Travel Sites Help You See the Sights

Without Breaking THE



tart by visiting, the official site for Texas tourism. You can find several events and activities across the Lone Star State that suit your interests, including regional festivals, concerts, rodeos, shopping and more. TravelTex. com also includes an interactive state map, trip planners and helpful information on available accommodations. When you visit, you can request a free Texas State Travel Guide, a 272-page guide packed with information on more than 400 cities, towns and attractions, with special sections on Lone Star lakes and state parks. Our stately next-door neighbors to the east also have great destinations and good times in store. Visit, the official site of the Louisiana Office of Tourism. Once there, you can order a free 170-page Louisiana Visitor Guide to help you plan a trip and navigate before you go. The site also hosts resources on upcoming festivals, attractions throughout the state, ADA-compliant lodging and more. In addition, you can read the updated Louisiana travel blog and sign up for travel-related alerts via e-mail. You can also contact the National MS Society toll-free at 1-800-344-4867 for information on other travel-related resources.

Moving Toward A World Free of MS



Two of the National MS Society’s largest fundraising events each rolled out on a bright note this spring on the road to a cure.


Nature Smiles on Cyclists Saddling Up for Spring Bike MS


irst up was the 26th Annual BP MS 150. On April 17-18, 13,000 registered participants from around the world and 3,000 volunteers got moving on this two-day, 180-mile trek from Houston to Austin. Since its inception in 1985 with an original rider roster of 237 participants, this annual ride has become the Society’s largest single fundraising event, with a 2010 target of raising $18 million. It’s also become a cycling tradition, with three Day One start sites in Houston, Katy and Waller, and a massive Overnight celebration in La Grange at the Fayette County Fairgrounds. More than 150 tents covered a space of

600,000 square feet in the fairgrounds, creating a BP MS 150 city-within-a-city. Teams make up 90 percent of the participants in the annual BP MS 150. The La Grange Overnight was a welcome respite for team members to relax, refresh and recharge midway through their weekend journey. The stately Capitol in Austin served as an inspiring backdrop for the BP MS 150 finish on April 18. Tens of thousands of spectators turned out to welcome riders across the finish. Two weeks later, on May 1-2, it was time for cyclists to saddle up and move ‘em out for the 2010 Bike MS: Sam’s Club in North Moving Toward A World Free of MS


Texas. 2010 fundraisers set their sights on rounding up $2.5 million through this event. At least 3,200 registered participants, accompanied by 1,000 volunteers, mounted up for the ride through North Texas from Frisco’s Dr Pepper Ballpark to downtown Fort Worth’s Sundance Square. After a brief initial Day One delay while a cool front rolled through the area, providing some natural Texas air conditioning, the skies cleared and Bike MS: Sam’s Club riders were ready to roll. Mother Nature’s sunny disposition was complemented by rolling hills of Lone Star wildflowers, adding blooming great scenery as cyclists provided pedal power. Participants relaxed and refueled at the Bike MS: Sam’s Club Overnight,


MSConnection • Summer 2010

located at Texas Motor Speedway, home to some of the biggest and best NASCAR racing events in the United States. The Bike MS: Sam’s Club is the only ride of its kind with this special Day Two racetrack perk: cyclists get to take their own victory lap on the speedway’s 1.5-mile inside track on Day Two. Riders were really revved up for this incentive and the final leg of the ride , into Fort Worth. During the cattle drives of the late 1800s, Fort Worth was one of the major stops on the legendary Chisholm Trail. On May 2, activity focused on trail riders of a different sort: participants in the 2010 Bike MS: Sam’s Club, who whooped and hollered across the finish into Cowtown. Finish lines in Austin and Fort Worth both bubbled over with excitement, thanks to the all-volunteer Bubble Bistro, the hugely popular form of spectator hoopla.

Bubble Bistro maestros Nancy Gerner, Margaret Pichon and Anne Roland first teamed up three years ago to add something that really popped to the Society’s fundraising rides. Their bubbly creation was a comfortable, tented viewing site conveniently located at the event finish line, providing a place for persons with multiple sclerosis to cheer for and support those riding in their honor. With room for at least 30 people, the brightly-colored Bubble Bistro featured cool relief from the heat, refreshments, bubble machines and plenty of enthusiasm. Participants in the annual Bike MS rides – along with San Antonio’s Bike MS: Valero ride and the Bike MS: Louisiana event this October – raise funds that support breakthrough MS research and vital services for persons living with MS,

including wellness programs, financial assistance, career counseling, camps for those affected by multiple sclerosis, independent living programs, advocacy, educational programs and much more. While their bikes were two-tired, BP MS 150 and Bike MS: Sam’s Club riders weren’t too tired to keep moving for a good cause: to help everyone living with the daily challenges of multiple sclerosis.

Information on all three Lone Star Bike MS events can be found online at, with Bike MS: Louisiana information available at You can also call the National MS Society at 1-800-344-4867 (press 2).

Moving Toward A World Free of MS



Study Suggests Smoking and Exposure to Epstein-Barr Virus May Interact as MS Risk Factors


n a new study, researchers show 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. Claire Simon, ScD, and Alberto Ascherio, M.D., DrPH, at the Harvard School of Public Health in Boston, and collaborators in Australia and Sweden reported their findings in Neurology in April. The results warrant confirmation in further studies. Background MS is thought to occur when people whose


MSConnection • Summer 2010

genes make them susceptible encounter something in their environment that triggers this immune-based neurological disease. Although many genes probably contribute to susceptibility, a specific gene that has been shown to confer higher susceptibility to MS is called HLA-DR15, which helps control how the immune system identifies targets for destruction. Although many infectious agents have been investigated at various times as possible MS triggers, no single virus or bacterium has been proved to cause the disease. However, previous studies have suggested the risk of MS is increased in persons who have had a history of infectious mononucleosis – caused

by the Epstein-Barr virus, or EBV – or who have high levels of blood serum antibodies against EBV, which indicate past exposure to the virus. Smoking has been associated with an increased risk of developing MS, as well as the rate of MS progression. In 2008, the Harvard team found that people who had both the HLA-DR15 gene and high levels of antibodies to the Epstein-Barr virus in the blood serum were nine times more likely to develop MS than those without that gene and with low levels of viral antibodies (Neurology 2008;70:1113-18). Exploring such interactions between genes and the environment may help researchers understand what triggers MS and also may point to ways to interfere with the development of the disease. The Study For the newly-published study, the Harvard team investigated even more complex relationships between MS genes and risk factors. They gathered information on people with MS enrolled in the ongoing Nurses’ Health Studies, a questionnaire-based longitudinal study that tracks risk factors for chronic diseases in female nurses; the Tasmanian MS Study, a study that identified people with MS in Tasmania; and the Swedish MS Study, in which people with MS were identified in a national health registry. Dr. Simon and colleagues looked at smoking history, presence of EBV antibodies in blood serum, presence of the HLA-DR15 gene and their relationship to MS risk in the combined group of 442 people with MS and 865 controls without the disease. By pooling results from each of the three studies, researchers found that each of the

factors raised the risk of developing MS at levels consistent with previous studies: those with the HLA-DR15 gene were about three times more likely to develop MS than those without this gene; those with serum EBV antibodies were about two-and-a-half times more likely to develop MS than those without EBV antibodies; and those who smoked were about one-and-a-half times more likely to develop MS than those who never smoked. However, when EBV exposure was taken into account, smoking only increased MS risks among those with high levels of serum EBV antibodies. Current or previous smokers with low levels of EBV antibodies had no increased risk for developing MS, whereas current or previous smokers with the highest levels of EBV antibodies were 70 percent more likely to develop MS than those with neither risk factor. The presence of the HLA-DR15 gene variation did not appear to modify any of these effects. Comment The National MS Society’s Task Force on Epidemiology of MS met in 2007 to establish research priorities for epidemiologic studies that examine aspects of people who get MS for clues to its cause. Investigating the interactions of genes and environmental factors was identified as an important avenue of research. This current study is novel in its approach, examining possible interactions between several risk factors, rather than looking at factors in isolation. If confirmed, the results may help to explain some of the complexities of MS, and open up new explorations into its cause and prevention.

Moving Toward A World Free of MS



Genetics Study of Twins Employs New Methods for Examining Causes of MS


esearchers recently reported on a new study using novel methods to compare genetic material in three pairs of identical twins, where one twin had multiple sclerosis and the other did not. The team found no evidence of any genetic differences that would explain why only one twin developed MS. The authors pointed out further experiments that might pinpoint such differences. Sergio E. Baranzini, Ph.D., with the University of California at San Francisco, and Stephen F. Kingsmore, MB, ChB, BAO, with the National Center for Genome Resources


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in Santa Fe, reported their findings in Nature (2010;464:1351-1356). Baranzini is a Harry Weaver Neuroscience Scholar of the National MS Society; the study was funded by grants from the Society, the National Institutes of Health, Small Ventures USA Inc., A. J. Brass Foundation and the Nancy Davis Foundation. Background The average person in the United States has about one chance in 750 of developing MS. The identical twin of someone with MS, who shares virtually all the same genes, has a one-in-four chance of developing the disease,

suggesting that some factors other than genetics are involved. Advances in technology have made it possible to examine the genetic makeup of individuals. This collaborating team decided to take advantage of these advances to develop profiles of genes and gene activity of twins, and to explore whether there were any obvious differences that might pinpoint why one twin developed MS and the other did not. The Study The team used next generation sequencing methods, which analyze data at unprecedented speed, to screen the genetic material in three pairs of identical twins, where only one member of each pair had MS. Researchers screened the entire genome in one pair of twins; studied millions of genetic variations in all of the pairs (SNPs, or single nucleotide polymorphisms, the most common type of variation in genetic material); and studied the genetic sequences from T cells (immune cells that are key players in the immune attack on the brain and spinal cord in MS) in all pairs. The group did not find any differences in genes or gene products, using any of these methods, that would explain why one twin developed MS and the other did

not. Researchers commented that further study – such as studying more specific subsets of immune cells – might yield further information of the molecular basis of MS and its risk factors.

The average person in the United States has about one chance in 750 of developing MS. The identical twin of someone with MS, who shares virtually all the same genes, has a one-in-four chance... Comment This study of identical twins reveals no genetic difference between twins with and without MS. This is a striking finding, given the significant role that genes play in MS, but the study is small and the authors do cite opportunities for further study that might yield better understanding of why individuals with virtually the same genetic blueprints, such as identical twins, are at different risk for developing MS. The authors also present novel methodology for studying the genetics of disease in twins.

Moving Toward A World Free of MS



Study Results Show Daclizuma Reduced Disease Activity in Relapsing MS and Reveal Novel Immune Mechanism


esults of a 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 Facet Biotech Corp.) or placebo show the higher dose reduced disease activity on MRI scans by 72 percent and the lower dose by 25 percent. Immune analyses show this reduction was associated with a dramatic increase in CD56bright NK cells, which was an unexpected finding.


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Daniel Wynn, M.D., John Rose, M.D., and colleagues published the study results in Lancet Neurology online in February 2010. What is Daclizumab? Daclizumab is a laboratory-created monoclonal antibody that blocks the activity of interleukin-2 receptor-alpha, a key immune activator in MS. The drug is approved for use in organ transplant rejection. In this study, among people taking

interferon beta and having disease activity, 78 people received 1 mg daclizumab injection under the skin every four weeks, 75 received 2 mg every two weeks and 77 received placebo for 24 weeks; they were then observed for 48 weeks afterward. The primary endpoint was total number of new or enlarged gadolinium contrastenhancing lesions (active areas of tissue damage) measured on brain MRI scans every four weeks between Weeks 8 and 24. Other outcomes included clinical scales of disease severity such as the EDSS and MS Functional Composite. In addition, the effects of daclizumab on subsets of immune cells were analyzed. After 24 weeks, compared to interferon and placebo, there was a 25 percent reduction in the number of new or enlarged areas of active damage on MRI in the 1 mg daclizumab group and a 72 percent reduction in the 2 mg group. No significant improvement in clinical scales was seen in the daclizumab groups compared to the interferon/placebo group. Daclizumab was not associated with significant changes in T cells or B cells, known players in the MS attack. However, the number of CD56bright natural killer cells was seven to eight times higher in both daclizumab groups than in the interferon beta/ placebo group. Severe adverse events – most frequently infections – occurred in 20 of 165 (13 percent) patients in the daclizumab groups vs. four of 77 (5 percent) in the interferon beta/placebo group. All infections were

treated successfully with standard therapies. Skin-related events, such as rash, occurred more frequently in the daclizumab groups than in the interferon/placebo group during Weeks 25 to 44, but the difference declined in Weeks 45 to 72. Two patients treated with daclizumab developed malignancies that appeared to be unrelated to study treatment.

Daclizumab is a laboratorycreated monoclonal antibody that blocks the activity of interleukin-2 receptor-alpha, a key immune activator in MS. The drug is approved for use in organ transplant rejection. Protective Role in MS In an accompanying editorial, Olaf Stüve, M.D., and Benjamin Greenberg, M.D., with The University of Texas Southwestern Medical Center at Dallas commented on the surprising immunological findings. “The true effects of this trial and previous observations on daclizumab might be more far-reaching than they seem at first glance,” they wrote, noting these natural “killer” cells may actually play a protective role in MS. “These cells might actively suppress pathogenic encephalitogenic T lymphocytes [disease-causing T cells] that participate in CNS inflammation.”

Moving Toward A World Free of MS



Drinking Milk During Pregnancy May Lower Baby’s Risk of MS


rinking milk during pregnancy may help reduce a baby’s chances of developing multiple sclerosis as an adult, according to a preliminary study presented at the American Academy of Neurology’s 62nd Annual Meeting in Toronto. The study involved 35,794 nurses whose mothers completed a questionnaire in 2001 about their experiences and diet during pregnancy with their nurse-daughter. Of the nurses studied, 199 women developed MS over the 16-year study period.

Researchers found that the risk of MS was lower among women born to mothers with high milk or dietary vitamin D intake in pregnancy. “The risk of MS among daughters whose mothers consumed four glasses of milk per day was 56 percent lower than daughters whose mothers consumed less than three glasses of milk per month,” said Fariba Mirzaei, M.D., with the Harvard School of Public Health in Boston. “We also found the risk of MS among daughters whose mothers were in the top 20 percent of vitamin D intake during pregnancy was 45 percent lower than daughters whose mothers were in the bottom 20 percent for vitamin D intake during pregnancy. “There is growing evidence that vitamin D has an effect on MS. The results of this study suggest that this effect may begin in the womb,” said Mirzaei. Fortified milk, fatty fish such as salmon and exposure to sunlight are the most important sources of vitamin D.

Editor’s note: This information was provided courtesy of the American Academy of Neurology. For information on the American Academy of Neurology, please visit 32

MSConnection • Summer 2010


Migraine More Common in Women with MS M

igraine is seen more frequently in women with multiple sclerosis than those without, according to a study presented at the American Academy of Neurology’s 62nd Annual Meeting in Toronto this spring. “While having a history of migraine diagnosis was linked to MS, women with migraine need to know that over 99 percent of them will never develop MS; thus, having migraine should definitely not be a reason to worry about getting MS,” said study author Ilya Kister, M.D., with New York University School of Medicine and a member of the American Academy of Neurology. “More research is needed since it’s still not known whether migraine is a risk factor for developing MS or if it is a condition that occurs at the same time as MS.” The study involved 116,678 women who were part of the Nurses’ Health Study II. Of these women, 18,000 had been diagnosed with migraine at the start of the study. The women were followed every two years for 16 years. During the study, 375 women were

diagnosed with MS. Of those, 82 had reported at the beginning of the study that they had been diagnosed by a doctor with migraine. The study found that women with a migraine diagnosis at the beginning of the study were 47 percent more likely to develop MS than women without a diagnosis. The results were the same regardless of age, where they lived, Scandinavian ancestry, vitamin D levels, smoking status and body mass index. The research represents the first large-scale study of its kind to explore the relationship between migraine and MS.

This information was provided courtesy of the American Academy of Neurology, an association of more than 22,000 neurologists and neuroscience professionals dedicated to promoting the highest quality patientcentered neurologic care. For more information about the American Academy of Neurology, visit

Moving Toward A World Free of MS



Two published studies lend credence to the idea that neuromyelitis optica (NMO), a disease closely related to multiple sclerosis, is an autoimmune disease that targets one or more specific proteins in the brain. The studies provide a rationale for new treatment approaches that could have implications for treating MS. The separate studies by Jeffrey Bennett, M.D., Ph.D., with the University of Colorado Denver School of Medicine; Monika Bradl, Ph.D., with the Medical University Vienna, Center for Brain Research; and international colleagues were published in the Annals of Neurology.

Evidence Supports Autoimmune Nature of Neuromyelitis Optica, an MS Mimic 34

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What is NMO? NMO is a disorder that until recently was often considered a variant of MS. It mainly attacks the optic nerves and spinal cord. As with MS, nerve-protecting myelin is destroyed in NMO by an immune system attack. Although antibodies are thought to play a role in MS, their important role in causing nervous system damage in NMO now appears more certain. In addition, treatment for NMO focuses on reducing circulating antibodies; finding better ways to distinguish between the two disorders early in the clinical course is one research goal.

The second study by Dr. Bradl and team compared the ability of antibodies taken from the blood of people with NMO, MS, other neurological diseases or healthy controls to alter the course of EAE in rats. Like Dr. Bennett’s team, this team found that antibodies from NMO patients whose blood was positive for aquaporin antibodies were able to alter EAE into an NMO-like disease.

Implications for Future MS Treatments In an accompanying editorial, Moses Rodriguez, M.D., with the Mayo Clinic College of Medicine wrote that both studies “strengthen the argument that NMO is an immune-mediated autoimmune disease New Findings process.” NMO now becomes the only In the two new studies, researchers autoimmune demyelinating disease for which conducted a series of experiments that the protein target (“antigen”) is known with help establish the role of anti-aquaporin-4 near-certainty. antibodies in the disease. This opens up possibilities for learning In the first, Dr. Bennett and colleagues how to treat demyelinating diseases in an investigated antibodies present in the spinal antigen-specific manner. This approach fluid of an individual who had recently carries the potential for stopping the experienced a first attack of NMO and autoimmune disease process without whose blood showed the presence of antipredisposing patients to complications aquaporin antibodies. The team explored of immune suppression, such as PML or how reactive the antibodies were toward cancer. This has strong implications for the human aquaporin-4 in lab dishes, finding that development of future treatments for MS, most attached to aquaporin-4. which is also demyelinating and believed to They also found that a specific antibe autoimmune in nature. aquaporin-4 antibody could produce changes To follow up this work, the National MS in disease when injected into rats with the Society launched a study by Dr. Bennett MS-like disease EAE and could also alter the identifying other antibodies found in people underlying pathology such that the tissue with NMO, to determine their precise targets destruction resembled that in NMO. This and, by testing their impact on a mouse study was funded by the National Multiple model of MS, exploring their contributions to Sclerosis Society, MS Society of Canada and tissue damage and the possibility that some others. may play a role in MS. Moving Toward A World Free of MS



FDA Approves New MS Drug Ampyra to Improve Walking by I.D. Freed, R.Ph.


I heard that 4-AP was finally approved by the Food and Drug Administration (FDA) for use by MS patients. Does this mean I can get it at any pharmacy instead of just the ones where they do compounding?

A: In January, the FDA gave its approval

for the sale of dalfampyridine (also known as 4-aminopyridine, 4-AP or fampridine) as a treatment to improve walking in patients with multiple sclerosis. It will be marketed by Acorda under the trade name Ampyra. 4-AP has been around since the 1930s, interestingly and originally used to deter birds from nesting in the eaves of tall buildings. An enterprising chemist tried to make 4-AP into a product that could be used safely by humans and pharmacists started getting prescriptions for low doses of 4-aminopyridine for their MS patients. One of the main reasons it’s taken so long for Ampyra to get FDA approval is its therapeutic index (the difference between


MSConnection • Summer 2010

the therapeutic level, or the amount of drug needed to get the desired effect, and the toxic level, where the drug gives undesirable effects). There isn’t a very large difference between an effective dose of Ampyra and one that can trigger convulsions with no advance warning, making the dosing of the drug like walking a tightrope. The prescribing information for Ampyra warns repeatedly about the possibility of having seizures while taking Ampyra, even if you have no history of them. I can relate my own experience with the drug: My neurologist had me on 4-AP for my MS around 1991. I loved what it did for me: it gave me more energy, helped my walking and increased my tolerance to heat. After about a year, though, I started

having strange episodes for 45-60 seconds a couple of times a day. When I reported this to my neurologist, he had me rushed to Parkland Hospital and I was attached to an EEG monitor for 24 hours of observation. At the end of the observation, he decided I had something similar to a “short circuit” in my head, where two axons with their myelin removed were close enough to each other that signals were jumping from one axon to another. I discontinued the 4-AP and, after about a week, the episodes stopped. I’m just glad those episodes all occurred while I was at home and not behind the wheel of my car. I look back at my experience and see that the amount of 4-AP I was taking then was higher than the recommended dose now.

Also, the formulation that Acorda is making is time-release, whereas the compounded version I took nearly 20 years ago was not. If I had been taking the drug as it’s available now with the time-release formulation and the lower dosage as now recommended by the FDA, I probably wouldn’t have had a problem. Now that dalfampyridine has been approved by the FDA, Ampyra should be appearing on pharmacy shelves by prescription only. Just don’t increase your dosage on your own and, as always, listen to your doctor and pharmacist when they warn you about possible side effects.

Moving Toward A World Free of MS



Keep Moving to Propel & Support MS Research Mark Neagli

Regional Executive Vice President • National MS Society


he National MS Society continues to move forward for MS research and programs to help everyone living with multiple sclerosis. As we reach the midway point of 2010, tens of thousands of people have kept us moving through our Bike MS and Walk MS events that raise money for research, programs and vital services. As you’ve read about in this bold new issue of MSConnection, two of the largest non-profit fundraising events of their kind in the United States rolled out in our region this spring. The Houston-to-Austin BP MS 150 in April was, as usual, a truly inspirational sight to see, and, two weeks later, we kept the movement rolling with the Frisco-to-Fort Worth Bike MS: Sam’s Club ride in May. Across our region, walkers and runners in cities such as San Antonio, Baton Rouge, New Orleans, Corpus Christi, Dallas and Fort Worth also stepped up for our spring Walk MS events, bringing entire families and communities into the MS movement. The movement continues this fall with our San Antonio-based Bike MS: Valero and Bike MS: Louisiana rides, as well as with our additional Walk MS events in Austin, Harker Heights, Houston, Katy, Kemah, Sugar Land, The Woodlands and Waco.


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Bike MS and Walk MS generate muchneeded funds for research, programs and services that benefit 400,000 Americans living with multiple sclerosis, including 20,000 Texas and 4,000 Louisiana families served by the National MS Society. With the ongoing support of our participants, volunteers, donors and sponsors, we’ve been able to increase the percentage of funds being devoted to research, helped drive major clinical trials on new MS drugs, boosted financial assistance for families living with MS, continued to expand our roster of popular wellness and exercise programs, increased the number of scholarships awarded to college-bound students affected by MS and much more. Those are truly moving accomplishments. I look forward to seeing you at our Bike MS and Walk MS events throughout the year. By joining us, you are making a profound difference in the lives of people living with MS everywhere. Thank you for joining the MS movement.

For more information on these events and to get involved as a participant, volunteer or supporter, contact the National MS Society at 1-800-344-4867 (press 2).

MS doesn’t wait and neither should you. Visit us online at 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


Sign Up to Step Out at an Upcoming Walk MS Event Near You It’s time to scoot your boots, Texas! Step up for an upcoming Walk MS near you. Free registration is now open for the Fall 2010 Walk MS events. In 2009, participants in 13 Walk MS communities across Texas raised more than $1.4 million to fund MS research and programs for individuals living with multiple sclerosis. WALK MS EVENTS... • Accessible and fun for the entire family • Welcome leashed canine companions at some walks • Have refreshments & entertainment • Chance to earn fantastic prizes (based on individual fundraising levels)

FALL SCHEDULE* September 18 Harker Heights (Carl Levin Park) October 2 Waco (Cameron Park Zoo) October 24 Austin (Dell Diamond) November 6 Kemah (Kemah Boardwalk) November 13 Katy (Katy Mills Mall) Sugar Land (Oyster Creek Park) The Woodlands November 14 Downtown Houston (Downtown Aquarium) *as of press time

Visit for details and free registration.

8111 North Stadium Drive, Suite 100 Houston, Texas 77054



Summer 2010 MSConnection Lone Star  

Summer 2010 edition of MSConnection, the official magazine of the National MS Society: Lone Star

Summer 2010 MSConnection Lone Star  

Summer 2010 edition of MSConnection, the official magazine of the National MS Society: Lone Star