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Moving Toward A World Free of MS Fall 2011

MS Activists Score Big Wins in 2011 Session

Also in this issue:

National Conference Set for Big D

Step-by-Step Journey of 100 Miles

Texans Rally for Walk MS

Partying with Purpose in the Big Easy

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.

Fall 2011 Volume 5 • Issue 4

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

Nominees for Board of Trustees Now Being Accepted Individuals interested in being considered for nomination to the Board of Trustees should submit a letter of interest and a biography, along with name, mailing address, email address and phone number. Nominees will be notified of board member expectations, responsibilities, fiduciary and time commitments. Final candidates will be interviewed by a

Dallas is on the Move Nov. 11 The 5th Annual Women on the Move Luncheon takes place Friday, Nov. 11, at The Ritz-Carlton in Dallas. Scheduled speaker is Cami Walker, author of “29 Gifts: How a Month of Giving can Change Your Life.” Women on the Move is a nationwide program created to raise funds and awareness for MS. In its fifth year, this program has touched the lives of more than 2,000 people across Texas and raised nearly $350,000. For information, contact Shelley Kaiser in the Society’s North Texas office at 469-619-4704 or shelley.kaiser@nmss.org.

Plug into Local Careers with the National MS Society The National MS Society is interested in professionals who share our vision of a world free of MS. In Texas, the Society has offices in Amarillo, Austin, Dallas, Fort Worth, Houston, Lubbock, Midland and San Antonio. Additional offices in the South Central United States are located in Albuquerque, N.M.; Little Rock, Ark.; New Orleans, La.; and Oklahoma City and Tulsa, Okla. To search current career opportunities

member of the Governance Committee. Nominations for the Board of Trustees must be submitted by Nov. 15, 2011 to: Mark Neagli National MS Society 8111 N. Stadium Drive, Ste. 100 Houston, TX 77054

with the Society office near you, go online to visit JointheMovementLoneStar.org. From the home page, click About Us in the left-hand navigation bar, followed by the Career Opportunities link.

Offices Closed for Upcoming Holidays Society offices will be closed for Thanksgiving Nov. 2325, 2011. In observance of year-end holidays, Society offices will be closed from Dec. 22, 2011 to Jan. 2, 2012. We will reopen in the New Year on Tuesday, Jan. 3, 2012.

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Volunteers Answer the Call to Help Their Communities by James Black Even in uncertain economic times, volunteerism is thriving in the South Central United States. According to a comprehensive Volunteering in America report released in August from the Corporation for National and Community Service,

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Oklahoma is the top state in the region, with an average volunteer rate of nearly 30%. It is followed by New Mexico (26.2%), Texas (23.8%), Louisiana (21.9%) and Arkansas (21.4%). Utah is the top state in the nation with a volunteerism rate of 44.5%.

National Results More than 62 million Americans on average volunteered 8.1 billion hours in 2010. The median number of hours served per volunteer rose from 50 in 2009 to 52 in 2010. According to the report, the total estimated value of volunteer service in 2010 was $173 billion, based on the average value of a volunteer hour, which was estimated at $21.36 last year. It was noted that members of Generation X – those born between 1965 and 1981 – have more than doubled their volunteer rate since 1989. In 1989, 12.3% of this group volunteered with an organization; by 2010, the rate had increased to nearly 30%. Across the United States, volunteers are helping organizations – particularly nonprofit agencies such as the National MS Society – serve the country’s most vulnerable citizens. As nonprofit organizations continue facing budget challenges and fewer resources, the contributions made by volunteers become more vital than ever. Most volunteers nationally devoted their time to fundraising efforts (26.5%), followed by collecting or distributing food (23.5%) and general labor (20.3%). On a national level, people volunteered most often with religious organizations (35%), followed by educational facilities (26.7%) and social service groups (14%). Geographically, most U.S. volunteers in 2010 lived in rural areas (27.9%), narrowly outdoing those in the suburbs (27.5%) and outpacing residents in urban centers (22.9%).

Geographically, those in Texas’ suburban and rural markets were nearly neck-and-neck. More than 25% of Lone Star volunteers lived in the suburbs, with 24.9% in rural communities and 22.3% in urban markets. Across all five South Central states, however, rural volunteers contributed the most hours, ranging from 52 hours in Arkansas to 72 hours in Oklahoma. In Texas, rural volunteers worked an average of 64 hours, compared with 56 suburban hours and 48 city hours.

South Central States Results When examining volunteerism for residents in Arkansas, Louisiana, New Mexico, Oklahoma and Texas, the Lone Star State was the only one in which fundraising was not the top volunteer activity. Collecting and distributing food (25.7%) was the top job for Texas volunteers, followed closely by fundraising at 24.9%. Mirroring the national trend, state volunteers chose to help religious organizations (a range of 3843% across the five states), followed by educational and social service groups.

Learn more about volunteering locally with the National MS Society and helping persons living with MS in your community. Visit www.volunteerMS.org or call 1-800-344-4867 (press 2).

City Comparisons In the five South Central States, Oklahoma had the top two volunteer rates per city: Oklahoma City (32.1%) and Tulsa (31%). The remaining top 10 South Central cities based on volunteer rates were Dallas (27.7%); Albuquerque, N.M. (26.7%); Baton Rouge, La. (25.6%); Little Rock, Ark. (25.3%); New Orleans, La. (24.4%); Austin (24%); San Antonio (22.5%); and Houston (22.5%). Fundraising was the top volunteer activity in Austin; El Paso; Lafayette, La; Little Rock; New Orleans; Oklahoma City; and Tulsa. The collection, distribution and serving of food was the top job for volunteers in Baton Rouge, Dallas, Houston and San Antonio, while tutoring was the top activity for Albuquerque, N.M. and Fayetteville, Ark. volunteers. Wherever they call home, South Central volunteers are making powerful differences in their communities.

Visit www.VolunteeringinAmerica.gov to read the complete volunteering report.

James Black is the editor of MSConnection and a Strategic Communications Specialist in the Society’s Houston office. He can be reached at james.black@ nmss.org.

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Meet Our 2011 Volunteer Hall of Fame Inductees At the National MS Society’s 2011 National Conference in Dallas Nov. 2 – 4, the following people will be inducted into the Society’s Volunteer Hall of Fame. Recognition as part of this elite group is one of the highest honors awarded to volunteers with the Society.

Advocacy Champion: Kim Campbell Kim Campbell is an MS activist from Kyle, Texas. Kim was diagnosed with MS nearly three decades ago, but she has never let her diagnosis stop her from taking action. Kim reaches out to her local, state and federal legislators to advocate for disability rights, support for family caregivers and access to services. Together with her husband Gary and sister Linda, she is dedicated to improving the lives of people with MS through advocacy.

Programs and Services Champion: Jack Engle Jack Engle was diagnosed with MS in 1996. A resident of Kingwood, Texas, Jack has been a volunteer for the National MS Society since 2002, when he volunteered for his first Family Discovery Camp. Since then, he has taken on many key leadership roles, but is best known for creating the woodworking kits each camper can build. Additionally, Jack is an MS Ambassador and volunteers each week at the Houston office, where he shares his smile, jokes and laughter each week.

Scientific Researchers Champion: Dr. Thomas Forsthuber Thomas G. Forsthuber, M.D., Ph.D., is Professor of Immunology and Adjunct Professor of Pathology at The University of Texas Health Science Center at San Antonio. Dr. Forsthuber supports the Society in engaging, inspiring and generating hope for the future through research promotion. In his 20-year career studying MS, he has received numerous honors, including the Harry Weaver Neuroscience Scholar Award of the National MS Society in 1997. He is Deputy Editor for the journal Cellular Immunology, and serves as a reviewer for a number of scientific journals and funding organizations, including the National MS Society.

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Society’s 2011 National Conference Heads to Big D Hundreds of persons living with MS and volunteers from across the United States will take part in the National Multiple Sclerosis Society’s 2011 National Conference in Dallas Nov. 2 – 4. The conference offers opportunities to hear about advances in research, upcoming projects in the MS pipeline and personal stories from those who are committed to the MS movement. In addition, the Society’s volunteer leaders of 2011 will be honored. To take part, visit the Society’s website at www. nationalMSsociety.org. Details on conference location, registration, applicable fees and more are available online or by calling 1-800-344-4867 (press 1).

Health Professionals Champion: Dr. George Hutton George Hutton, M.D., is Chairman of the Society’s South Central Regional Clinical Advisory Committee and a champion for everyone with MS. As Assistant Medical Director and Clinical Research Director of the Maxine Mesinger MS Comprehensive Care Center at the Baylor College of Medicine, and Director of the MS Clinic at Ben Taub General Hospital in Houston – to name only two of his many roles – Dr. Hutton continues to share his profound expertise in the vital areas of research, education and contribution to the care of persons with MS.

Programs and Services Champion: Brett Maxwell Fort Worth, Texas resident Brett Maxwell was diagnosed with multiple sclerosis in April 2002. For the past eight years, he has volunteered with the National MS Society, playing a key role in the Service Provider project by updating and adding new community resources throughout Arkansas, Louisiana and Texas databases. Brett provides the essential information for MS Navigators to assist persons with MS and their families. His efforts have helped the Society update its service providers by 95 percent.

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2011 Scholarship Recipients Announced Multiple sclerosis shouldn’t stand in the way of an education. This is why the National MS Society’s scholarship program exists: to help highly qualified students who have been diagnosed with MS or who have a parent with MS achieve their dreams of going to college. The Society established its scholarship program in 2003. In its first year of operation, the program awarded 36 scholarships for a total of $68,000. Since then, this important initiative has continued to grow; in 2011, more than $1 million was awarded nationwide to 639 scholars, an increase of 149 students since 2010. Regionally, the National MS Society is pleased to announce the 2011 scholarship recipients in Arkansas, Louisiana, New Mexico, Oklahoma and Texas. This year, the Society was able to award 61 college-bound students with scholarships ranging from $1,000 to $3,000 each. Nationally in 2011, 811 students submitted scholarship applications, up from 742 in 2010, a clear demonstration of the need for this targeted financial assistance program.

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The continued increase in the number of awarded scholars demonstrates the Society’s ongoing commitment to supporting students affected by multiple sclerosis throughout their academic careers. This year, the Society was able to fund 439 new applicants – up from 313 last year – and 200 renewals – up for 177 in 2010 – for nearly $1.2 million. While this was an increase of $178,950 from 2010, the Society was not able to fund all of the deserving students who applied. Support for the scholarship program comes from foundations, individual donors, the Society’s own employee-giving program and other sources. You can help turn a student’s college dreams into reality when you support the National MS Society’s scholarship program. To learn more, contact your local Society office by calling 1-800-344-4867 (press 2).

The Society’s 2011 South Central scholars – listed in alphabetical order by state – are: Arkansas Dallas Barnett Hannah Coker Brittany Curry Katherine Kordsmeier Ashley Renegar Kelly Strickland Louisiana Samantha Guidry Lauren Lejeune Troy Norton Joshua Randall Gill Walker Jr. New Mexico Kristine Davis Maraka Hannagan Kathryn Sanchez

Oklahoma Mary Barker Kenneth Black Tracy Gilliam Katie Hanson Alyson Heath Jeremy Kinsey Grant Morgan Callie Mort Seth Rutledge Whitney Sterett Mackenzie Stout Texas Kelly Ammons Kelsea Baker Bradley Bellows Lauren Brewer Elliot Cleaver

Krystal Cortez Kayla Davis Katherine DeHaven Austin Duval Skyler Ewing Sara Fuerst Haley Gaston Kamron Gatlin Brandi Harrison Taylor Hatch David Hatteberg Avery Jones Emily Jones Bridgette Kieffer Chelsea Lemons Ryein Marks Ann Martinez Anisha Mathew Mandi Moran

Reid Munger Paige Nowlin Austin Payne Bridget Petty Lydia Sancer Aubrey Scott Kiersten Smith Zachary Smith Brenna Stubbs Kassie Trevino Justin Williams Emily Windolph

2012 Scholarship Applications Available Online The National MS Society offers a scholarship program for students living with multiple sclerosis or who have a parent living with MS. Applicants must be planning to attend an accredited postsecondary school for the first time and to take at least six credit hours per semester leading to a degree, license or certificate. Each recipient is selected based on financial need, academic performance, compelling personal or family circumstances, and an applicant’s essay on the impact of MS on his or her life. Awards range from $1,000 to $3,000 for one year. A small number of four-year awards are also offered.

Starting Oct. 1, 2011, scholarship applications for 2012 are available on the Society’s website. There is no application fee for Society scholarships. Completed applications and supporting materials must be submitted by mid-January 2012. For guidelines and applications, visit www. nationalMSsociety.org/scholarship or call the Society toll-free at 1-800-344-4867 (press 1). The Society’s website also has an informative list of additional scholarship opportunities, including federal assistance and other financial aid resources.

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Stuff Our Stocking for the Holidays and Beyond W

hile many people have holiday wish lists at this time of year, the National MS Society’s wish list is in season year-round. Financial gifts provide the Society with the most flexibility in delivering programs and services to people living with and affected by multiple sclerosis. We recognize, however, that many people have resources and connections to a variety of needed products and services that can also help us achieve our goals. If you would like to donate any of the items listed below or know someone who can, contact Taylor Mallia with Strategic Philanthropy in the Society’s Houston office by calling 1-800344-4867 or via email at taylor.mallia@nmss.org.

• Airline tickets • Art and sporting event tickets • Audio/visual equipment and services • Banners and signage • Beverages • Catering • Children’s activities • Event supplies, including tents, tables and chairs • Florist services • Food • Gift certificates or gift cards (any store) • Gifts/giveaways • Home modification equipment or services • Hotel accommodations

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• Ice • Office supplies, including paper, mailing labels, toner, etc. • Professional photography services • Professional printing services for postcards, brochures, posters, etc. • Plaques/awards • Plastic/paper products • Portable toilets at fundraising events • Postage • Rental and refrigerated trucks • Restaurants (receptions, gift certificates, etc.) • Walkers • Wheelchairs

A Year in Review: How Individual Giving Makes a Difference by Kristen Stubbs Editor’s note: After an outstanding tenure as Regional Vice President, Strategic Philanthropy, Kristen Stubbs is leaving the Society for the next stage of her professional career in the non-profit sector. We wish her well in her continuing service to our community and are pleased to share her final year-end review column with our MSConnection readers. I am always amazed at how quickly time flies the older we get. Remember when as a little kid you thought Christmas would never come? Well, here we are again winding down the year and reflecting once more on where we have been, where we are now, and where we will be going in 2012. At the National MS Society, we are going places! We are going places with our research, with our medication development, with our events, and with our programs and services for people living with MS. Our new MS Research Revolution: No Opportunity Wasted initiative to raise $250 million by 2015 is in full force and we are busy identifying donors who can make that lead gift to fund crucial research to Stop the progression of MS, Restore lost function and End MS forever. Stop * Restore * End is our new mantra around the Society and I invite you to become a Research Champion along with thousands of other people who want to do something about MS NOW! To see the latest and greatest research initiative from the Society, go to www.nationalMSsociety. org/research/now-champion/index.aspx and take the 10-minute Research Champion course to join thousands of other people who are a part of the MS Research Revolution.

Speaking of research, what a difference a year can make. In 2011, we saw the very first oral diseasemodifying drug come to market. What a breakthrough! For some people living with MS, they can now take a simple pill called Gylenia instead of using a needle and giving themselves an injection. The development of this drug was made possible by donors who have given generously throughout the years. We can’t make a difference without you. Our various South Central offices continue to provide many important and life-changing services to people living with MS, their families and the health care providers who serve them. We continue to help people in financial crisis, hold wellness and exercise classes throughout the region, and provide expert information and referral services, as well as execute walks and bike rides which serve to provide a rallying point for people who want to help. Again, all of these programs and events are possible because of the support from our fundraisers and donors. As you consider your year-end gift, please keep in mind the tens of thousands of people in our region who live with MS. Please keep in mind the many opportunities that are available for volunteers and donors. Please keep in mind that your tax-deductible gift may provide help for someone in crisis. And lastly, please keep in mind that MS stops people from moving. We exist to make sure it doesn’t.

If you would like to make a year-end donation to the Society, please contact Taylor Mallia at taylor.mallia@ nmss.org.

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Read All About It with Lending Library

In support of our mission, the National MS meet the amount of requests received, two books Society provides access to accurate, current and will be sent at a time. If you request more than two comprehensive information to people with MS. books, the remainder of your order will be mailed Books and other media resources are available in increments of two upon the return of the books through the Lending Library at no cost to those with initially mailed to you and according to availability. MS and their families. This process will continue until your order is To browse the complete. To browse the Lending Lending Library and Items are loaned out for a place an order, visit Library and place an order, visit three-week period to help JointheMovementLoneStar. JointheMovementLoneStar.org meet the requests of other org and click the “Library and members. Included with your and click the “Library and Literature” link in the leftshipment will be a postageLiterature” link in the left-hand paid return envelope so books hand navigation tab. Upon placing an order with may be returned at no charge navigation tab. the Lending Library, please to you. If you wish to keep the know that we will work books for longer than three diligently to fill your request in a timely manner. weeks, contact our office to renew. Brochures are Note that some books may be currently checked out yours to keep and do not need to be returned. by other members at the time of your order. We will If you have questions about your order, call the keep a record of your entire order and, as materials Society at 1-800-344-4867 (press 2). become available, they will be mailed to you. To

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Live Fully, Live Well Program Promotes Wellness and Health M

anaging your health and wellness is an integral part of living well with multiple sclerosis. Live Fully, Live Well is a comprehensive wellness program from the National MS Society and Can Do MS, designed for people with MS and their support partners. Live Fully, Live Well covers topics affecting the whole family living with MS to strengthen relationships, increase understanding and promote improved health and quality of life. All areas of this free program provide you with the resources, knowledge and tools to create a personalized wellness plan. Take part through upcoming webinars on the following 2011 dates and topics: Oct. 20 Planning for Your Future Nov. 17 How Does Exercise Fit Into Your Life with MS? Dec. 1 Eating Well, Eating Easy

You can sign up for these free webinars on the Society’s website. Visit nationalMSsociety.org, then click the Living with MS link, followed by the Live Fully, Live Well link.

While online, you can also view past webinars on subjects such as attending to your health, maximizing mobility and achieving independence, fatigue-related challenges, and recreational activities and travel. Live Fully, Live Well In-Person Program Comes to Dallas Nov. 5 Persons with MS, their spouses, family members and friends are encouraged to attend the upcoming Live Fully, Live Well in-person program in Dallas on Nov. 5. The free program will include presentations and workshops on mood and cognition, prioritizing your time and activities, and attending to your health. Registration for the in-person program closes at 1 p.m. Friday, Nov. 4. This program tends to fill quickly, so register today via the contact information below. There will be no registration on the day of the event. Live Fully, Live Well In-Person Program Saturday, Nov. 5, 2011 • 8:30 a.m. – 3:15 p.m. Dallas, Texas Location to be announced. (Ask for details at registration.)

To register or for more information, contact Can Do Multiple Sclerosis at 1-800-367-3101 or info@ mscando.org.

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Texan Takes Unique Steps on 100-Mile Journey by Lee Kilborn

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oug Ryan likes to run. He’s spent years running marathons and ultra marathons, even running 100-mile mountain races. All of that rough terrain was rough on Doug’s body, so, in an effort to stay fit but be kinder to his body, Doug turned to the elliptical machine at his local gym. Last year, during a daily workout, the Hickory Creek, Texas resident was struck with a thought: “I bet I could do 100 miles on this machine.” That fleeting thought turned into a test of endurance and a mission of love. Not only would he run 100 miles on that machine, he would raise awareness and funds for a cause close to his heart. In 1997, Doug’s wife, Sherry, a professor at the University of North Texas in Denton, was diagnosed with MS. An avid runner and athlete herself, she shared Doug’s passion for fitness along with his “can do” attitude. While Sherry’s MS has led her to use a wheelchair, it has not diminished her desire to stay active. Sherry teaches full-time and continues to work out nearly 10 hours a week. Over the years, Sherry has even developed innovative exercise routines involving winches, hand pedals and grab bars. For example, she utilizes grab bars to do squats, followed by isometric exercises with an elastic band and plastic ball, then wrapping up with bicep curls using a hammer.

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Obviously, these two are up for any kind of challenge. When Doug told Sherry of his “Elliptical 100” idea, she immediately began helping him set up a fundraising account with the National MS Society and used Facebook, Twitter, family and gym support systems. Earlier this year and with friends and family cheering for him, Doug began his 100-mile stationary journey at 24 Hour Fitness in Lewisville. With short bathroom and caloric intake breaks, he completed his personal endurance challenge and approached the “finish line” – and his inspiration, Sherry’s smiling face – 18.5 hours later. Doug’s tremendous dedication and endurance raised more than $7,500 and made an immeasurable gift of love and support to his wife. Through humor and determination, Doug and Sherry plan to clear every possible hurdle they encounter, side by side.

Do you have a passion that could be a fundraiser or community event? If so, contact Sharon Ziegler with the National MS Society at 432-522-2143 for more information. Lee Kilborn is the Community Development Manager is the Society’s North Texas office. She can be reached at lee.kilborn@nmss.org.

Cyclists Accept the Challenge in October

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ctober marks the annual return of the Texasbased Bike MS: Valero 2011 Alamo Ride to the River, presented by H-E-B, and the Bike MS: Louisiana. In San Antonio, the 2011 Bike MS: Valero ride begins Saturday, Oct. 15. Thousands of participants begin their journey at the AT&T Center, home of the NBA Championship San Antonio Spurs. Led by the Velo Valero team and the top 10 fundraising teams, cyclists embark on a two-day trek to support everyone living with multiple sclerosis. On the first day, Bike MS: Valero participants have their choice of three options covering 47-, 70- and 100-mile routes. All routes lead to their overnight home at the Comal County Fair Grounds in New Braunfels. Following breakfast on Sunday morning, Oct. 16, cyclists saddle up for the 60-mile return to San Antonio and the finish line at the AT&T Center. In 2010, the Bike MS: Valero event raised more than $1.15 million. This year, the fundraising goal is $1.3 million. Earlier in the month, the good times will roll across two states with the Bike MS: Louisiana. The adventure begins Saturday, Oct. 1, at Southeastern Louisiana University in Hammond, La. Riders get an early start on their 75-mile journey on Day One, fully supported on the well-organized and

carefully-planned route by safety, police, medical and Society personnel. Along the way, participants cross the line – the state line, that is – as they head toward the overnight stop at scenic Percy Quin State Park in McComb, Miss. Known for good fun, the Bike MS: Louisiana is also renowned for another Southern tradition: mouth-watering, beltbusting great food. No one goes hungry on this ride, where gumbo, red beans and rice, and meat pies are just a few of the delicious delicacies ready to satisfy cyclists’ appetites. At the overnight park pit stop, everyone chows down, rests and recharges while swapping a day’s worth of cycling stories and enjoying rockin’ entertainment from local bands. On Sunday morning, Oct. 2, it’s time to go down south again as riders pedal 72 miles back to the finish in Hammond, La. Last year, Bike MS: Louisiana participants raised more than $593,000. For 2011, fundraisers are targeting a goal of $663,000 to drive MS-related services and research.

Join the festivities as a rider, volunteer or donor. For information on the Bike MS: Valero event, visit www. bikeMStexas.org. For details on Bike MS: Louisiana, visit www.bikeMSlouisiana.org.

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Texans Rally for Fall Walks by James Black

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housands of residents in Austin, Houston, Katy, Kemah, Sugar Land, The Woodlands, Tyler, Waco and their surrounding communities will lace up and step up this fall for the annual Walk MS series. Whether you walk, run, stroll or roll, Walk MS is a fun, family-friendly event that’s open to everyone, regardless of ability. You can join the festivities and team up with friends, family members, co-workers and neighbors. Walk participants raise crucial funds to support services and research in Texas and throughout the United States. There is no minimum pledge for joining a local walk, but the average participant raises more than $225. Registration for each walk is free. Participants and volunteers will enjoy free refreshments and entertainment before and after the event. As the rallying point of the MS movement, Walk MS is a community coming together to raise funds and celebrate hope for the future. For Christina Cooper, the path toward joining the Walk MS: Austin began one morning when her husband had difficulty speaking. Doctors initially believed a stroke or brain tumors were the cause; ultimately, multiple sclerosis was diagnosed. “I will never forget the pain and fear I had of possibly losing my husband, the man I love with all my heart and the father of my children,” Christina wrote. “I pray that with all the help from family and friends we can raise enough money so when the future progresses I will always have him by my side.”

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Walk MS: Kemah fundraiser Lisa Anders’ involvement in the mission began when her mother needed assistance signing a check because her arm was numb. “A few days later, she went to a doctor and was given the news. She had MS,” Lisa shared on her Walk MS Web page. “For my mom and thousands of others, there is hope, but no cure. With all our technology and medical advancements, understanding this disease still eludes modern science. It is my hope that by raising funds and awareness, we can finally, once and for all, find the means to end this debilitating disease.” In Tyler, Megan Barmore and Team Tammy Against MS are united in their reason for walking. “My mom, Tammy Wimberley, was diagnosed with MS about nine to 10 years ago. It has obviously been very hard on her and those in her life,” Megan said. “I want to do everything to prevent more people from learning what it means to live with this disease.” Houston Team Captain Diane Rhoads shared, “Our son Jordan was diagnosed with MS in February. Our daughter-in-law’s sister was diagnosed last fall.

Although we have always supported fundraising functions for this disease, now it is personal. We as a family are doing what we can to increase awareness and be involved in fundraising to escalate the ‘Rhoads to the Cure.’” Katy participant Crystal Flores is also setting an important goal for this year’s event. “If I accomplish one thing by attending this walk, I want to spread awareness,” Crystal wrote. “I want everyone to know exactly what MS is, what it does to people and how it can change lives, as well as family members directly involved on a daily basis.” Sugar Land walker Peggy Kovach wrote, “I was diagnosed with MS in April 2010. As you can imagine, this diagnosis changed my life. This year, for the first time, I will be participating in a walk benefiting those

Saturday, Oct. 1 Walk MS: Waco, presented by Subway Heritage Square 3rd Street and Austin Avenue in Waco Site opens: 8 a.m. Walk begins: 9 a.m. Saturday, Oct. 22 Walk MS: Katy, presented by KBR Katy Mills Mall 5000 Katy Mills Circle in Katy Note: Park at Entrance 8 near the AMC Theatre Site opens: 8 a.m. Walk begins: 9 a.m. Saturday, Oct. 22 Walk MS: The Woodlands, presented by KBR Rob Fleming Park 6055 Creekside Forest Drive in The Woodlands Site opens: 8 a.m. Walk begins: 9 a.m. Saturday, Oct. 29 Walk MS: Austin Dell Diamond Hwy. 79 at 3400 East Palm Valley in Round Rock Site opens: 9 a.m. Walk begins: 10 a.m.

of us living with MS. I feel very blessed that I am able to participate and help with the fundraiser this year.” To register, volunteer or donate – and for the most current information and event updates – visit www. walkMStexas.org. You’ll also find plenty of useful information including route maps, parking, photos, fundraising tools, lists of top fundraisers and top fundraising teams, walker spotlight stories and more. Dates, locations and times for the 2011 Fall Walk MS series follow. Note that the walk in Katy offers a 1-mile loop route, but all other walks offer 1-mile and 5K route options.

For questions or comments on this article, contact MSConnection Editor James Black at james.black@nmss.org.

Saturday, Oct. 29 Walk MS: Tyler, presented by Subway Rose Rudman Park 411 ESE Loop 323 in Tyler Note: Site is across from the Robert E. Lee High School football field Site opens: 8 a.m. Walk begins: 9 a.m. Saturday, Nov. 12 Walk MS: Kemah, presented by KBR Kemah Boardwalk 2155 Kipp Ave. in Kemah Site opens: 8 a.m. Walk begins: 9 a.m. Saturday, Nov. 12 Walk MS: Sugar Land, presented by KBR Sugar Land Memorial Park 15300 University Blvd. in Sugar Land Site opens: 8 a.m. Walk begins: 9 a.m. Sunday, Nov. 13 Walk MS: Houston, presented by KBR University of Houston main campus 4800 Calhoun Road in Houston Site opens: 8 a.m. Walk begins: 9 a.m.

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ADVOCACY

For MS Activists, Success is in Session at Texas Legislature By Mireya Zapata

At the National MS Society, we relentlessly advocate for federal, state and local government policies essential to people affected by MS, and we champion the rights of people with disabilities. Following is a report on the Society’s advocacy efforts and successes with the 2011 session of the Texas Legislature. 18

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MS Activists’ Priority Legislation The Texas Budget (HB 1) The dominating issue of the session was the state’s budget and the $27 billion shortfall. The Texas Legislature ultimately decided to balance the budget by implementing deep budget cuts across state agencies, spending $4 billion out of the state’s Rainy Day Fund for shortfalls in the current budget, and the use of state funds in “dedicated accounts,” or funds that are collected for a particular purpose but remain unspent. Many Texans living with MS will be impacted as the state’s Medicaid and Community Based Services waiver programs implement utilization reviews, caps, service limitations and provider reimbursement rate cuts. Also key to balancing the budget was the Legislature’s decision to leave an estimated $4.8 billion in Medicaid expected caseload growth unfunded until the beginning of the next legislative session in 2013. MS activists will need to remain vigilant to ensure that this emergency appropriation is made at the start of the next regular session. Protecting Respite Services Funding During the legislative session, MS activists came forward to share their personal stories in support of family caregiver legislation. Activist Gary Campbell testified as one of 2.7 million unpaid, informal family caregivers in Texas who care for a loved one. MS activists successfully advocated for Family Caregiver Respite legislation, creating a program allowing middle income families to receive vouchers to pay for help in caring for their loved ones at home. In addition, legislators included $1 million to begin funding the respite program in pilot communities. In February, MS activist Kim Campbell provided powerful testimony during a Senate budget hearing in support of Home and Community Based Services, and she highlighted the important role family caregivers have in allowing persons with chronic illness to remain in their homes. Thanks to Kim and Gary’s passion for advocacy, Texas’ Lifespan Respite Care Program’s $1

million appropriation was protected and remains intact. This legislative victory would be a huge feat during any session, but is particularly impressive during a difficult budget cycle. OPIC Amendments Withdrawn from HB 1 As the Texas House prepared to begin debate on House Bill 1, the appropriations bill, Society staff and MS activists were surprised to learn of two amendments authored by State Rep. Jason Isaac (R-Dripping Springs) and State Rep. Raul Torres (R-Corpus Christi) that proposed defunding the Office of Public Insurance Counsel (OPIC). During the last year, the Society and MS activists have worked with OPIC on issues that are important to people living with MS. The advocacy team quickly issued an Action Alert to MS activists living in these House districts regarding their legislators’ efforts to eliminate funding for OPIC and to share the detrimental effects this could have in our efforts to

Advocacy by the Numbers • 100 percent success on our three top priority issues • 12 calls to action, sent to the Action Alert advocacy email network • 419 emails sent to legislators by MS activists • 15 “Weekly Legislative Updates” shared with Action Network • 85 in-person visits to Texas legislators by MS activists • Seven MS activists testified in legislative hearings • 50 MS activists attended the 2011 Texas Public Policy Conference

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Rep. Rick Hardcastle shared his personal story of living with MS and energized attendees at the 2011 Texas Public Policy Conference.

make insurance affordable and available to Texans living with chronic illness. Rep. Isaac and Rep. Torres ultimately withdrew their amendments. We are pleased that OPIC is no longer under direct threat of elimination and we will maintain our support for the agency’s continuation. Banning Discretionary Clauses (HB 3017) In December 2010, the Texas Department of Insurance issued a rule prohibiting the use of “discretionary clauses,” contract language that gave an insurance company the ability to unfairly deny benefits. This victory was a result of the leadership and tenacity by MS activists Deborah and David Rankin, who brought the issue to the attention of the Office of Public Insurance Counsel, a state office that represents Texans on insurance matters at the department. David had first-hand experience with discretionary clauses, having been denied long-term disability benefits after his diagnosis in 2006. Deborah and David fought the insurance company in court and won, but they didn’t stop there. They were determined to make sure that no other family was impacted the

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way theirs had been. The department’s decision to ban discretionary clauses in rule paved the way to legislation this session. Impressed by the Rankin’s efforts, State Rep. John Smithee (R-Amarillo) filed House Bill 3017 to put the ban on discretionary clauses in Texas law. The Rankins partnered with the Society to engage MS activists in support of the legislation and to secure its passage, thereby protecting every Texas family from unfairly being denied insurance benefits. The Rankin’s provided key testimony in the House Insurance Committee hearing and issued a personal call to action to MS activists across Texas. In response, almost 200 MS activists emailed their representatives in support of the bill. David’s “Story Card,” that told of David’s experiences and his life with MS, also proved to be a powerful tool. During a Senate hearing, Senator Leticia Van de Putte (D-San Antonio) noted, “This is a very compelling story of David Rankin. I would urge [members] to read over it. It tells you exactly why this bill is needed.” House Bill 3017 was sponsored in the Senate by Senator Robert Duncan (R-Lubbock), Chairman of

Rep. John Smithee, pictured with MS activists in his Capitol office, sponsored two MS priority bills this session, including legislation to guarantee prescription drug coverage during the contract year and to require notification of critical changes prior to re-enrollment.

the State Affairs Committee. It was signed into law by Gov. Rick Perry on June 17 and became effective immediately. Continuity of Prescription Drug Coverage (HB 1405) Accessing prescription drugs is a daily challenge for many Texans with MS. The high cost of copays, and increasingly co-insurance, are even more insurmountable during difficult economic times. It is essential that people with MS who have prescription drug coverage as part of their insurance policies be able to count on that coverage during the entire time of the contract period. This session, the Society worked with Rep. John Smithee, Chairman of the House Insurance Committee, to file House Bill 1405, legislation to prohibit midyear increases to prescription co-pays and to provide advance notice of formulary change. Representatives Craig Eiland (D-Galveston), Rick Hardcastle and Barbara Nash (R-Arlington) joined him as JointAuthors of the bill. As HB 1405 made its way through the legislative

process, the MS Action Network gave hundreds of Texans living with MS the opportunity to communicate to legislators their experiences with high cost, disease-modifying and symptom management drugs. They explained how unexpected mid-year increases to co-pays can sometimes make it impossible to afford these critical medications. MS activist Tracy Brinton was among those who testified before the House Insurance Committee and asked representatives to help Texans living with a chronic illness to be able to budget for the cost of their medications by voting for HB 1405. Like many Texans with MS, Tracy works hard to stick to her family’s budget to make her monthly health insurance premiums and prescription drug co-insurance. Her testimony was a powerful tool in gaining the committee’s support for the bill and building momentum. As passed by the Texas Legislature, House Bill 1405 maintains prescription drug coverage for the entire length of an enrollee’s contract and requires 60day notice of any changes prior to the re-enrollment period. It was sponsored in the Senate by Senator Bob

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David Rankin motivated hundreds of MS activists to join him in support of legislation to ban the use of “discretionary clauses” in Texas, contract language that gave an insurance company the ability to unfairly deny benefits.

Deuell (R-Greenville), Vice-Chair of the State Affairs Committee, and signed into law by Gov. Perry on June 17, becoming effective Sept. 1. Working in Partnership: Other Key Legislation The National MS Society has strong partnerships with many of Texas’ leading advocacy groups, including the Disability Policy Consortium, the Coalition of Texans with Disabilities, the Center for Public Policy Priorities and the AARP. Together, we work to provide a voice for Texans living with chronic illness and disabilities in many policy areas, including health insurance reform and better access to long-term care services and supports. The Society will continue to support efforts regarding: • Texas Health Care Connector (HB 636) During the session, the Society participated in the Cover Texas Now coalition, a group of organizations that supported the creation of a health insurance

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exchange in Texas. We worked together to make sure that any adopted legislation functioned with transparency so affordable health care would be easily accessible for all Texans, especially those living with disabilities. MS activists Howard Adams and Tracy Brinton and South Central Executive Vice President Mark Neagli provided testimony before the House Insurance Committee in support of House Bill 636 by Rep. John Zerwas. This legislation would have created the Texas Health Care Connector, or state health insurance exchange. As envisioned by the Affordable Care Act, the exchange would allow individuals and small employers to shop for affordable health coverage. Health plans in the exchange would have to offer a stated set of benefits and the exchange would give Texans information allowing them to easily compare price and coverage options between the plans. Unfortunately, HB 636 did not pass. The Society will closely monitor efforts currently underway at the Texas Department of Insurance to

implement a state-run health insurance exchange. As outlined in the Affordable Care Act, states have until 2014 to do so at which time the federal government will step in if individual states have failed to take action. The Society supports a state-run health insurance exchange that allows Texans to shop for a health insurance policy that meets their needs and budgets. • Create a Comprehensive Access Point for Long-Term Care Services (HB 329) This session, the AARP worked with State Rep. Ryan Guillen (D-Rio Grande City) to file House Bill 329, legislation that would have created one pilot site to test a comprehensive access point for long-term care services. In the pilot area, seniors

and people with disabilities would be screened to determine if they are likely to be eligible for assistance with community care services. The goal would then be to get community care services started quickly so that seniors and people with disabilities who are in urgent need of long-term care have alternatives to more costly facility settings. The Society supported the AARP’s efforts this session and, although HB 329 did not pass, we will continue to partner with the AARP in any future attempts to pass similar legislation.

Mireya Zapata is the Regional Director for Activism and Long Term Services in the Society’s Austin office. She can be reached at mireya.zapata@nmss.org.

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New Orleans Prepares for Artistic Renaissance This November by James Black

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ew Orleans has elevated the party into an art form. Even in a city as colorful as the Big Easy, though, one gala stands out as the artistic and social highlight of the season. Creativity reigns when the Louisiana office of the National MS Society hosts the sixth annual Peoples Health Renaissance Party at 7 p.m. Friday, Dec. 9, 2011, at the Renaissance Arts Hotel in New Orleans. The good times roll with a spirited, festive evening of fine food, drink and jazzy entertainment, with eye-catching artwork and auction packages up for bids. But this isn’t simply art for art’s sake. This is a party with a purpose. Since 2006, the Renaissance Party has raised more than $650,000 to support programs and services for men, women and children affected by multiple sclerosis. Funds raised from donors and charitable attendees help paint a clearer picture of a world free of MS.

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That world is brought to vivid life through dozens of paintings and sculptures created and donated for auction by the Crescent City’s most talented artists. There’s something for everyone at the Renaissance Party, however. At last year’s event, just a few of the many other articles up for auction were a prize package of a 50-inch plasma TV, Blu-ray disc player and HD surround sound system; fine jewelry; dinner parties; a vacation to Steamboat Springs, Colo.; theater passes; Pilates classes; athletic club memberships; a “staycation” at New Orleans’ trendiest spots; roundtrip plane tickets; wine tastings; gift certificates; memorabilia signed by NFL quarterbacks Peyton and Eli Manning; and football jerseys signed by quarterback Drew Brees with the hometown favorite Super Bowl-winning New Orleans Saints. Obviously, things are done in a big way for this Big Easy event, including a mouth-watering round-up of New Orleans’ best dishes and desserts. A live jazz band will be on stage to help guests dance the calories away.

“This is our social event of the season and a large part of our success is thanks to the continued support of our presenting sponsor for this event, Peoples Health,” said Rebecca Pennington, Vice President of the Society’s Louisiana office. “Their partnership helps enhance the health and well-being of everyone we serve. It’s a special way that Peoples Health and our guests at the Renaissance Party are giving back and supporting our communities.” Sharing that frame of mind, volunteer members of the Renaissance Party Planning Committee, working with the Society’s Louisiana staff, are putting their considerable talents to perfect use to make this year’s party unforgettable. “The Renaissance Party is as colorful and as exciting as New Orleans itself,” Pennington said. “It’s

a celebration of the unique culture that makes us stand out and our shared passion that helps us stand together to help everyone affected by MS.” For more information or to reserve tickets for the 2011 Peoples Health Renaissance Party, visit the Society’s Louisiana website at www. nationalMSsociety.org/lam.

MSConnection Editor James Black encourages everyone to experience New Orleans’ great Renaissance Party on Dec. 9. For comments or questions on this article, he can be reached at james.black@nmss.org.

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RESEARCH

Research Round-Up Global Consortium Doubles the Number of MS Risk Genes Identified In the largest MS genetics study ever undertaken, a global collaboration of scientists has identified 29 new genetic variants associated with MS, and confirmed 23 others previously associated with the disease, verifying a major role for the immune system in the development of multiple sclerosis. The study involved nearly 10,000 people with MS and more than 17,000 controls without MS, and was funded by the Wellcome Trust, the National Institutes of Health, the National MS Society and many other organizations. Most of the genes implicated in the study were related to immune function; more than one-third have previously been confirmed to be associated with autoimmune diseases. In a second study, collaborators showed diseases believed to be autoimmune share many similar genetic variants. To date, the results of genetics studies in MS do not significantly improve the ability to provide genetic counseling to individuals. However, the findings promise to better define the biological pathways leading to MS and enhance our ability to design better treatments for early MS. Medtronic Reports on Possible Battery Issues in SynchroMed Pumps In July, Medtronic provided physicians with new information about possible reduced battery performance in a small percentage of the SynchroMed drug pumps used to deliver intrathecal baclofen, a

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medication used to treat severe spasticity. A battery with reduced performance may need to be replaced sooner than expected. In addition, the reduced performance may cause the drug flow rate to be reset to a very low level. In the event of reduced battery performance, a person would experience a significant increase in spasticity and perhaps some withdrawal symptoms as the supply of medication is decreased. Medtronic is not recommending pump replacement because the risk of this change in battery performance is very low and the surgery poses its own risks. The pump’s alarm system will sound if there is a problem. For more information, call Medtronic Patient Services toll-free at 1-800-510-6735. Study in Taiwan Finds Increased Risk of Developing MS Following Virus Attack Researchers have reported that people who experienced an attack of herpes zoster – which usually manifests as the skin rash known as shingles – were more than three times as likely to develop MS over the next year than individuals without such an attack. The findings came from a unique study using a large data set of Taiwanese people who are generally at lower risk for MS than those of European descent. This study warrants confirmation in other ethnic populations. Jiunn-Horng Kang, MSc, M.D.; Herng-Ching Lin, Ph.D.; and colleagues at Taipei Medical University and Hospital reported their findings in the June 2011 Journal of Infectious Diseases.

Since initial exposure to numerous viruses, bacteria and other microbes occurs during childhood, and since viruses are well-recognized as causes of nervous system damage and inflammation, it is possible that a virus or other infectious agent is the triggering factor in MS. More than a dozen viruses and bacteria – including measles, canine distemper, human herpes virus-6 and Chlamydia pneumonia – have been investigated to determine if they are involved in the development of MS. Recently, various types of evidence point in particular to an association between MS and the Epstein-Barr virus, a herpes virus known to cause infectious mononucleosis and other disorders. Company Decides Not to Seek Approval for Cladribine In late June, Merck Serono announced that it had decided not to pursue approval of its oral therapy Cladribine for the treatment of relapsing forms of multiple sclerosis. According to a company press release, discussions with the U.S. Food and Drug Administration made it apparent that clinical trials of the therapy would not address the FDA’s requirements for approval. Details of these requirements have not been made public. In March, the company had received a letter from the FDA indicating that its application for approval was not ready in its current form and outlining requirements for additional information. The company has stated that it plans to complete the current clinical trials and patient registry that are underway, and that results will be published. Society-Funded Research Finds Possible Regulator of Myelin Repair Researchers reported this summer that a molecule – called Axin2 – may be essential to regulating the repair of nerve fiber-insulating myelin, and may be a good target for future therapies aimed at regenerating myelin that has been damaged by the MS disease process. Myelin is the substance that nourishes and insulates nerve fibers and is damaged in MS. Stephen Fancy, DVM, Ph.D.; David Rowitch, M.D., Ph.D.; and colleagues at the University of California-

San Francisco reported on a study co-funded by the National MS Society’s Promise: 2010 initiative, the MS Society of the United Kingdom and Northern Ireland, and other funders. This study furthers the Society’s goal of restoring function that has been lost to people with MS by identifying a possible target for nervous system repair strategies. Team Pinpoints Gene-Environment Interaction in Cells from Persons with MS Studying human cells isolated in the laboratory, researchers have revealed a novel interaction between two genes that influence susceptibility to developing MS, certain environmental factors, and a chemical process called N-glycosylation that modifies the structure of molecules. Together, this may contribute to our understanding of how complex interactions lead to the development of MS. Michael Demetriou, M.D., Ph.D., with the University of California – Irvine and colleagues published their findings in the May 31, 2011 edition of Nature Communications. The team was funded in part by the National MS Society. Dr. Demetriou’s team examined DNA samples from about 13,000 people with MS or controls. The team looked at how four previously reported susceptibility genes that are involved in immune system activities – interleukin-7 receptor-alpha, interleukin-2 receptor-alpha, MGAT1 and CTLA-4 – affect N-glycosylation. Researchers then examined how a particular environmental factor such as vitamin D affected this interaction. Results suggest that these genes do alter N-glycosylation in cells isolated in the laboratory, but that both vitamin D and a dietary supplement called N-acetylglucosamine were able to suppress this process in cells and in mouse models of MS. This study provides new evidence for a link between genes and the environment in the development of MS; additional research is needed, however, before it is possible to generalize these findings to all cases of MS. Bone Health is a Concern in Early MS Researchers reported that low bone mass was more prevalent among people newly diagnosed with MS, or those with clinically isolated syndrome (CIS,

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a first episode of MS-like symptoms), than among controls without MS. The risk of bone loss had been known for people with MS, but this study showed that it can occur very early, even before MS has been diagnosed. Stine Marit Moen, M.D., and colleagues at Oslo University Hospital reported their findings in July. The team measured bone density in several areas and the total body in 99 people newly diagnosed with MS, or those with CIS, compared to 159 controls without MS. They also administered a questionnaire concerning risk factors for osteoporosis, a disease that causes bones to thin. More than half of the people with MS or CIS had low bone mass, compared with 37.1 percent of controls, and low bone mass remained significantly lower in the spine and hip even after adjusting for other possible risk factors. The authors concluded that this study “calls for an active approach to optimize bone health in early stages of MS.” Positive Results Announced from First Phase III Study of Alemtuzumab in MS Sanofi and its subsidiary Genzyme announced that the experimental intravenous therapy alemtuzumab (with a proposed brand name Lemtrada) met one of two primary endpoints by significantly reducing relapse rates in a two-year study comparing two annual cycles of alemtuzumab against standard subcutaneous dosing of Rebif. The study, called CARE-MS I, involved 581 people with early relapsingremitting MS. The study did not meet its second primary endpoint of slowing disease progression compared to Rebif. Data analysis is ongoing and the company expects to provide a full report at an upcoming medical meeting. Another trial of alemtuzumab, called CARE-MS-II, is currently underway. Study Investigates Cost Effectiveness of Therapies to Treat MS A study co-funded by the National MS Society, the National Institutes of Health and the University of Rochester examined the cost-effectiveness of therapies to treat MS. Results were released in July 2011, finding that the cost for improving the quality of life for people

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with MS in the United States is high. The study in no way suggested that anyone appropriate for these treatments should not be on them; in fact, it found that the earlier disease-modifying therapies were used, the more cost-effective they were. This adds to growing evidence suggesting that treating MS early and consistently is the best way to ward off future disease activity. Initial Results Released from Phase III Study of Laquinimod Teva Pharmaceutical Industries Ltd. and Active Biotech announced in August that the phase III BRAVO study – in which the experimental oral drug laquinimod was tested against inactive placebo in a study involving more than 1,300 people with relapsing-remitting MS – did not reach its primary goal of reducing the average number of relapses in a year. However, when the investigators adjusted the data to correct for differences in magnetic resonance imaging characteristics at the start of the study, a significant reduction in average annual relapse rate was observed in the group receiving laquinimod. Further analysis is ongoing. The companies plan to submit applications to regulatory authorities for the treatment of MS in the United States and European Union. Phase II Trial of Daclizumab Reduces Average Annual Relapse Rate Biogen Idec and Abbott Pharmaceuticals announced in an Aug. 10, 2011 press release that DAC HYP – a liquid formulation of the monoclonal antibody daclizumab delivered via monthly injection under the skin – reduced the average annual relapse rate significantly in a study of 600 people with relapsing-remitting MS over a one-year trial. Full data from the “SELECT Study” are to be presented at an upcoming medical meeting.

RESEARCH

Resources Help You Take the Next Step W

hether the symptoms that brought you to the doctor are relatively new or you have been searching for answers for some time, the words “multiple sclerosis” can be very frightening. The National MS Society offers resources to boost your knowledge. MS Next Step MS Next Step is designed to answer commonlyasked questions immediately following a diagnosis. If you are just beginning your search for information about MS; wondering how the diagnosis may affect you; or considering issues like disclosure, treatment strategies and working with your health care team, MS Next Step is for you.

MS Next Step includes: • A printed booklet to introduce you to MS, common concerns and helpful resources • A DVD including interviews with people who have learned to live well with MS and who provide perspectives relevant to those newly diagnosed • Electronic files of the booklet content and video transcripts, all included on the DVD • Spanish translations of the booklet and transcripts on the DVD; Spanish subtitles are available on the video content. If you are newly diagnosed and would like to receive a copy of MS Next Step, contact the National

MS Society by calling 1-800-344-4867 (press 1 when asked). Knowledge is Power For individuals who have already developed a basic knowledge of MS, Knowledge is Power is an ideal way to add to your knowledge and learn how to live better with multiple sclerosis. Knowledge is Power is a free, at-home educational series for people newly diagnosed and their families. It is written by Dr. Rosalind Kalb, a highly-regarded author and psychologist who knows about the effects of MS on your life and the lives of those who care about you. The program provides up-to-date facts about many aspects of MS. It also offers information on dealing with one of the greatest challenges presented by MS – the unpredictability and uncertainty of the future. In the convenience of your home, Knowledge is Power gives you new topics each week, including dealing with your diagnosis and disclosure, diseasemodifying treatments, maximizing employment options, working with your doctor and more. You can have Knowledge is Power delivered to your email or postal address at no cost to you. Contact the Society at 1-800-344-4867 (press 1) and specify email or postal mail for delivery. Knowledge is Power is available in Spanish upon request.

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RESEARCH

Neurologists Begin to Build Consensus on Managing Pediatric MS

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he process of building consensus on the medical management of pediatric MS and similar disorders has begun, thanks to a systematic survey conducted by the Network of Pediatric MS Centers of Excellence established by the National MS Society. Amy T. Waldman, M.D., and colleagues at Children’s Hospital of Philadelphia identified and agreed on specific treatment approaches, and also identified areas for further research. The Society is supporting a data coordination and analysis center so important research on pediatric MS can continue. Although MS occurs most commonly in adults, it is also diagnosed in children and adolescents. Estimates suggest that 8,000 – 10,000 children – defined as those up to 18 years old – in the United States have multiple sclerosis. Another 10,000 – 15,000 have experienced at least one symptom suggestive of MS. Because of the critical need to better understand pediatric MS, the Society established a network of Pediatric MS Centers of Excellence. Each of the six centers offers comprehensive services through multidisciplinary teams, including pediatric and adult MS experts. The centers are working together to improve evaluation and management strategies to enhance diagnosis and care of children with MS and other related disorders; develop resources for families, health care professionals and the public; and collect data that will enable large scale research initiatives. For this study, the authors invited 67 physicians associated with the network (or others identified for their expertise in MS and similar diseases) to participate; 42 accepted. They sent out a series of questionnaires that were answered anonymously and then analyzed. Technical support for this effort was provided by the Society. Consensus – defined as agreement by more than 75 percent of the respondents – was reached on several items, including:

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• Initial evaluation of a child or teenager should involve magnetic resonance imaging (MRI) scans of the brain and several blood tests, including complete blood count, erythrocyte sedimentation rate and basic metabolic panel. • Acute attacks of the brain or spinal cord do not always require treatment; the decision depends on the symptoms of the attack, the severity and the timing relative to the medical evaluation, among other factors. • Intravenous methylprednisolone is the first-line treatment of choice for acute attacks of MS in children, and similar disorders such as neuromyelitis optica. • Respondents would stop or change diseasemodifying therapy if relapses increase or if side effects occur that interfere with daily activities. For some items, a majority opinion was formed (50 to 75 percent of respondents). For example, a majority supported the use of disease-modifying therapies in children diagnosed with MS or considered at high risk for the disease. Other areas were not agreed upon, reflecting a need for further research. There was lack of agreement on the optimal choice of second-line treatments for acute attacks and on the frequency of MRI scans when monitoring pediatric patients with MS and similar disorders. Also, consensus was not reached on whether to use disease-modifying therapies in children younger than the age of 5. The initial grants to the Pediatric Network Centers of Excellence have been extended for an additional year to continue funding the comprehensive care centers. There is also funding for the next two years to support a data coordination and analysis center so the network can continue to collect data, and to study pediatric MS and related disorders. Additionally, the network is planning to expand its collaboration to include other sites around the United States that are interested in gathering data on these diseases.

New CMSC Reports Focus on Quality of Life Issues

RESEARCH

From National MS Society reports

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he core purpose of the Consortium of MS Centers (CMSC) is to maximize the ability of MS health care professionals to impact care of people who are affected by multiple sclerosis, thus improving their quality of life. The CMSC held its 25th annual meeting in Montreal this summer, featuring more than 200 reports on research to improve care and quality of life of people with MS. Here is a small sample of these reports: Exercise boosts cognitive function Cognitive changes are common in people with MS. Brian Sandroff and colleagues at the University of Illinois-Urbana enrolled 42 people with MS who wore accelerometers for seven days and were administered tests of cognitive function. More physical activity was associated with faster information processing speeds, independent of a person’s disability status. In a similar effort, the National MS Society is currently funding a trial comparing the ability of aerobic exercise versus a stretching program to improve cognitive performance.

Is fatigue an MS predictor? Fatigue is one of the most common symptoms of MS and may be the most prominent symptom in a person who otherwise has minimal activity limitations. Joseph Berger, M.D., and colleagues at the University of Kentucky in Lexington looked at the frequency with which fatigue heralds the onset of MS. Among 5,305 people with MS, 29 percent reported fatigue in the three years before MS diagnosis. In 30 percent of these patients, fatigue was the only symptom preceding MS diagnosis. Fatigue preceded MS diagnosis by an average of 501 days. The authors advise that, in people experiencing unexplained fatigue, a detailed neurologic history and exam should be conducted to rule out MS. Nintendo Wii helps improve functional balance Balance can be difficult to maintain for people with MS. Erin Korsbrek, MSc, and colleagues at the University of Calgary enrolled 18 people with MS in a study using the Nintendo Wii Fit Plus gaming

New Pediatric MS Handbook Provides Parents with Tools for School

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n August, the National MS Society introduced a resource for families with a child or teen with MS. The “Managing School-Related Issues: A Guide for Parents Living with a Child or Teen with MS” handbook provides parents with the tools and resources to be their child’s best advocate in the school system. It includes a discussion on the potential impact of MS in

the school setting, recommended accommodations and modifications, transition issues, and sample plans and requests for academic accommodations. The handbook is a collaborative project of the Network of Pediatric MS Centers of Excellence, led by the team at the Regional Pediatric MS Center at University of California – San Francisco. It is available

on the Society’s website at nationalMSsociety.org, then click through About MS>Who Gets MS>Pediatric MS>Pediatric MS Support Group. Printed copies are available by calling the Society at 1-800344-4867 (press 1). There is no charge for this new pediatric MS resource.

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system three times per week for six weeks. Functional balance improved, and measures of fatigue and other symptoms remained stable, indicating no adverse effects. Coauthor Maureen Dunn, Ph.D., with Hope College in Holland, Mich. is currently funded by the National MS Society to conduct a 12-week trial to determine whether Wii is an effective balance rehabilitation tool for people with MS. LSU-Shreveport team finds negative preclinical results in resveratol Research has suggested that resveratrol, a component of red wine, enhances the activity of a molecule (SIRT1) that might help to preserve nerve fibers. It has been shown in several studies to decrease the severity of the MS-like disease EAE in mice. Fumitaka Soto, Ph.D., at Louisiana State University in Shreveport and colleagues reported that resveratrol actually worsened EAE in mice, causing severe damage. Further research will be needed to sort out this issue. Evaluating relationship education “Relationship Matters: A Program for Couples Living with MS” was developed by the National MS Society to help couples affected by MS to strengthen their partnerships and minimize the impact of MS on their lives. Couples receive eight hours of programming via teleclasses or in-person workshops. Kimberly Koch, MPA, with the National MS Society and colleagues looked at a sample of more than 1,000 participants. They found significant increases in relationship satisfaction, along with clinically significant improvement in mental health. Funding for this project was provided by the U.S. Department of Health and Human Services, Administration for Children and Families. Risk tolerance for MS therapies Recently, several more effective, but more risky, therapies have become available to treat MS, and more are under development. Society grantee Robert Fox, M.D., and colleagues at the Cleveland Clinic Foundation administered a web-based questionnaire on risk tolerance to more than 10,000 people enrolled in the North American Research Committee on

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MS (NARCOMS) registry. A total of 5,446 people completed the questionnaire. Results showed that three factors were associated with increased tolerance for risky therapies: increased disability, male gender and not currently being on an MS treatment. These results can help to guide discussions between clinicians and people with MS. Psychosocial factors related to smoking Research suggests smoking may increase the risk of developing MS and may speed disease progression. Joseph Ostroff and colleagues at State University of New York in Buffalo examined factors that distinguished smokers from nonsmokers in a sample of 1,300 people with MS. Smokers were significantly more likely to be single or divorced, and to experience higher levels of pain, fatigue, tension and loneliness. Educating physical therapy students about MS Angela Rosenberg, PT, DrPH, and colleagues at the University of North Carolina-Chapel Hill, along with Kaye Gooch of the Society’s Eastern North Carolina Chapter, presented a program developed by the university and the Society to educate physical therapists in the management of the neurologic and psychosocial needs of people with MS. Evaluations of the program indicated increases in MS-specific knowledge. The team hopes this two-year program will serve as a model for other universities. Breathing problems during sleep Sleep-disordered breathing is a problem of respiration that occurs during sleep, such as sleep apnea. Tiffany Braley, M.D., a Sylvia Lawry Physician Fellow of the National MS Society, explored the occurrence of these disorders in 48 people with MS and 84 controls without MS. The results suggested that people with MS and disease activity in the brainstem (the lower extension of the brain where it connects to the spinal cord) had a predisposition for sleepdisordered breathing. People with these disorders reported fatigue, lack of energy or tiredness to be their most problematic symptom, as opposed to excessive daytime sleepiness.

130 Studies Presented in Annual Update of Clinical Trials

RESEARCH

Society Provides Online Resource for Locating Local Studies

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his summer, the National MS Society presented its 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. The 2011 list of 130 studies indicates an exciting time in MS research, with therapies progressing through the drug development pipeline. Highlights of the 2011 listing include: • More than 20 phase III studies are ongoing; these are the trials that provide data presented to the U.S. Food and Drug Administration when sponsors file for drug approval. • An increasing number of novel agents are being tested for neuroprotective capabilities, including antioxidants, green tea extracts, a drug used for pain relief and the epilepsy drug phenytoin; two of these trials are funded by the National MS Society. • Nine trials are examining whether rehabilitation interventions (e.g., cycling) can improve symptoms including depression, mobility, spasticity and cognitive function. By comparison, there were only two of these trials on the list in 2005. • Moving MS clinical research forward is not possible without people with MS; more than 52,000 people with all types of multiple sclerosis and those at high risk for MS participated, or are currently participating, in these studies. The current listing of Clinical Trials in MS is available on the Society’s website at www. nationalMSsociety.org. Click on the Research tab near the top of the page, then the Clinical Trials link in the left-hand navigation bar of the Research Web page. Understanding the Role and Process of Clinical Trials Clinical trials help to determine if a drug is safe and effective for people living with the daily challenges of multiple sclerosis. People with MS who are willing to volunteer in these studies make it possible for

everyone to look forward to new and better therapies. Many factors are involved in making sure a study is conducted properly and that results are valid. The U.S. Food and Drug Administration requires therapies to undergo three phases of clinical trials before they can be approved to treat people with MS: • Phase I – The first step is to determine safety. In a small number of healthy volunteers or persons with MS, the investigators determine how the human body reacts to the therapy. • Phase II – If the therapy proves to be safe, studies begin to determine the effectiveness of the drug in people with MS. These studies may last several months or several years, and involve larger numbers of people. The study is “controlled” – that is, the drug is compared with the standard treatment or an inactive placebo. • Phase III – If an MS drug shows effectiveness, an even larger study is conducted in hundreds of people to gain a better understanding of the drug’s effectiveness and possible side effects. These multicenter studies can span several years and several countries. Following FDA approval, post-marketing studies (phase IV) might be conducted to assess long-term safety and effectiveness. Participate in Local Clinical Trials The Society provides a database of trials currently recruiting people with MS. It is available at www. nationalMSsociety.org/trialsrecruiting and can be searched by state, type of MS and keyword. Within the South Central United States, for example, a recent search by state found 13 recruiting clinical trials in Texas, five each in Arkansas and Oklahoma, six in Louisiana and eight in New Mexico. The database also includes a list of international studies.

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RESEARCH

Research Teams Report First Year’s Progress from Initial Studies of CCSVI From National MS Society reports

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he first-year progress reports from seven multidisciplinary teams investigating CCSVI (chronic cerebrospinal venous insufficiency) in MS indicate that they are on track to provide essential data and critical analysis as these two-year projects move toward completion. These studies were launched in July 2010 with a more than $2.4 million commitment from the MS Society of Canada and the National MS Society. The research teams have already recruited a broad spectrum of people with multiple sclerosis and others to build understanding of who may be affected by CCSVI. In addition, they are refining CCSVI imaging methods for accuracy and consistency to reliably validate the occurrence of CCSVI and understand its implications in the MS disease process. These seven teams were chosen by an international panel of experts that included specialists drawn from all key relevant disciplines including radiology, vascular surgery and neurology. The projects were selected for having the greatest potential to quickly and comprehensively determine the significance of CCSVI in the MS disease process. All have received approval for their studies from the required Institutional Review Boards in the United States or the Research Ethics Board in Canada, a first step established by regulatory authorities to protect human subjects involved in research projects. More

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than 486 people have already undergone scanning with various imaging technologies being used by the studies, including the Doppler ultrasound technology originally used by Dr. Paolo Zamboni and his collaborators, as well as magnetic resonance studies of the veins (MR venography), catheter venography, MRI scans of the brain and clinical measures. Because the studies employ rigorous controls designed to collect objective and comprehensive data, the full results of the ongoing research will be available after completion of the studies, which will involve more than 1,300 people representing a spectrum of MS types, severities and durations, as well as individuals with other disease types and healthy controls. In the meantime, several teams are planning to present preliminary results at medical meetings later this year. “We are pleased that this important work investigating the link between CCSVI and MS is advancing quickly,” said Dr. Tim Coetzee, Chief Research Officer at the National MS Society. “Results from these comprehensive studies will help inform important next steps.” The funded investigators reported progress in establishing standardized protocols, recruiting and scanning participants, and in the development of plans for sharing their findings:

Dr. Brenda Banwell, The Hospital for Sick Children, Toronto, Ontario: To determine whether signs of impaired vein drainage might be present early in the MS disease course, Dr. Banwell’s team received approval from the Research Ethics Board and began enrolling children and teenagers who have MS, and healthy controls of the same age. They are seeking venous abnormalities using non-invasive MRI measures of vein anatomy and novel measures of venous flow, as well as ultrasound. Unlike adults with MS, children are unlikely to have age-related changes in blood vessels, and are less likely to have adult health conditions such as high blood pressure or heart disease, which might otherwise complicate findings. The researchers’ ultrasound team received training in Dr. Zamboni’s original techniques from the Buffalo Neuroimaging Analysis Center; the team has created ultrasound and brain imaging procedures suited to explore venous drainage in children. Dr. Banwell’s team reports that recruitment is going well and plans to analyze findings only after all 90 participants have undergone the testing. Dr. Fiona Costello, Hotchkiss Brain Institute, University of Calgary, Calgary, Alberta: Once it received Research Ethics Board approval, Dr. Costello’s team began recruiting a cross-section of people with MS who would be compared with those affected by other neurological diseases or healthy volunteers. They have three dedicated ultrasound technologists who have been trained to do scanning as originally done by Dr. Zamboni and they have refined their scanning protocol. The team is planning to repeat scans on a subset of participants who had been scanned before they made method changes, which will allow them to compare the sensitivity of results pre- and post-training. Dr. Costello’s team slowed recruitment briefly to upgrade to a new 3 Tesla (3T) MRI scanner, twice as strong as standard clinical MRI, and they have expanded their MRI team to include two additional, experienced members. The 3T machine went online in March 2011 and is now being 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 is actively recruiting participants to undergo MR venography and ultrasound techniques to investigate CCSVI in people with early and later stages of MS, controls with other conditions and healthy volunteers, now that they have received approval of the study from the Institutional Review Board (IRB). The team has refined its MR venography protocol to account for variations in blood flow that occur with breathing and heartbeats. They have determined that they will use a relatively new contrast agent or dye that will permit high-quality images of the veins in the head and neck and for measuring blood flow in the brain. This will enable the entire MRI/MRV exam to be completed with one timesaving injection instead of two. They have also standardized locations along the length of veins where they take blood flow measurements because they have found large differences in both anatomy and size of head and neck veins. Dr. Robert Fox, Cleveland Clinic Foundation, Cleveland: After his team received IRB approval for using MR venography, ultrasound, MRI and clinical measures in people with MS or who are at risk for MS (CIS) and comparison groups, they began recruiting and scanning participants. The ultrasound team found several aspects of the published methodology ambiguous; the team has standardized protocol and analysis to achieve consistent results. They shared their solutions to these methodological challenges in a poster presented at the American Academy of Neurology’s annual meeting in April 2011. The poster outlined physiological and technical factors that can complicate screening for vein blockages using ultrasound, including that heartbeat irregularities, stages of breathing, head Moving Toward A World Free of MS

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position and pressure applied by the operator could alter results; and that the state of hydration of the subject (whether the subject drank adequate amounts of fluids) could impact results of several of the criteria used to determine CCSVI. They concluded that these complications may help explain the mixed results reported thus far related to CCSVI and MS. They have added to their aims a study designed to evaluate the impact of hydration on CCSVI assessments. Dr. Carlos Torres, The Ottawa Hospital, University of Ottawa, Ontario: His team obtained Research Ethics Board approval after negotiating details over elements of the informed consent form used to explain the study’s procedures and potential outcomes to participants. The team has been conducting the first phase of scanning, using MRI and MR venography, in people without MS, which will be used to compare with various scans in people with MS. Dr. Torres expected to finalize phase one of the study by the end of the summer and then will move on to phase two, which involves people with MS and other controls. Dr. Anthony Traboulsee, UBC Hospital MS Clinic UBC Faculty of Medicine and Dr. Katherine Knox, Saskatoon MS Clinic, University of Saskatchewan: After both sites received Research Ethics Board approval, they began to recruit and have scanned a significant number of participants. They are also using catheter venography and MR venography to investigate the prevalence of CCSVI in people with MS and controls without MS. After the radiologists at both sites met in February 2011 to ensure consistency of their protocols, they did a second wave of recruitment and hope to finish all testing before the end of 2011.

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Dr. Jerry Wolinsky, University of Texas Health Science Center at Houston: After receiving IRB approval, Dr. Wolinsky’s team began recruiting participants. Their neurosonographer 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. The team is testing whether other imaging methods can confirm the ultrasound findings, while identifying the most reliable technique to screen for CCSVI. Dr. Wolinsky’s team continues to encounter difficulty in recruiting non-MS control subjects who don’t have a personal interest in the purpose of the trial. The executive committee that oversees this study has agreed with the team’s plan to continue aggressively recruit other controls, while at the same time increasing the number of MS participants. In some cases, they also found that some participants who were contacted to go into the next phase of scanning informed the investigators that they had gotten the venoplasty procedure, which made them ineligible to continue in the study. Moving Forward At this one-year milepost, investigators are making significant progress on their overall two-year study goals. The teams are making plans for sharing preliminary results at upcoming medical meetings. They have demonstrated a clear willingness to share technical advice so the projects can move forward as smoothly and as quickly as possible. Their results will help guide the development of a phase I/II clinical trial recently announced by the Canadian Federal Minister of Health to test whether treating vein blockages may be safe and effective in treating people with MS. The next update on the work of the seven grantees will be reported in six months.

Business Relationships Provide Food for Thought Lupe Tortilla and My Fit Foods Give Back with Mission to Serve MS Community by Calvin Pollard II

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elationships are the vital cornerstone with which the National MS Society operates and finds success. This includes the volunteers who spend countless hours supporting daily and event operations, doctors, researchers and client service practitioners who are working toward a cure, event participants who raise money and MS awareness, and the businesses and corporations which donate money, goods and services to minimize event costs while being responsibly committed to the community. Many of the Society’s Walk MS and Bike MS events offer a fun and exciting environment to enhance the experience for fundraisers. A festive and lively atmosphere at the events helps motivate walkers and cyclists to participate and encourages them to reach their fundraising goals. To provide a fun and festive experience, the Society depends on relationships with corporate partners to assist with reducing event costs. The business of many of these sponsors lends themselves to help with specific goods and services. Such examples include trucks to move equipment, printing for signs and banners, water to hydrate participants or food to feed them. Providing food is one of the costliest expenses needed to support Society events throughout the year. Two Houston-based businesses – Lupe Tortilla and My Fit Foods – have fed a lot of the Society’s constituents over the past few years. In the last event season alone,

these two food providers combined have served more than 4,500 meals to persons with MS, volunteers and fundraisers at meetings and events. To offer an idea of this cost savings, if each meal is around $15 per serving, this totals more than $65,000 a year. Judson Holt, CEO of Lupe Tortilla Mexican Restaurant, believes in giving back to the community. “Community involvement is very important to Lupe Tortilla and we applaud all individuals who give to those in their area,” said Holt. It is because of this dedication to the National MS Society that their support has grown with the organization. As they have expanded their retail locations to Austin, Dallas and San Antonio, likewise their generosity has grown to support the Walk and Bike MS events in these cities. It is due to the wonderful relationship that has cultivated and grown over time that allows this partnership to flourish. As the National MS Society continues to provide events that raise vital funds for research and programs, businesses like Lupe Tortilla and My Fit Foods provide support to alleviate expensive event costs that result in more fundraising available to focus on the mission.

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.

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Registration Opens for Spring 2012 Bike MS R

egistration opens this October for two 2012 Bike MS fundraising events: the Houston-to-Austin BP MS 150 and the Frisco-to-Fort Worth Bike MS: Sam’s Club rides. Combined, more than 16,000 registered cyclists and 4,000 volunteers take part in the two annual spring treks through Texas. The BP MS 150 and the Bike MS: Sam’s Club events raise funds for MS research and services.

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At press time, 2012 BP MS 150 priority registration is set to open Oct. 5, with general BP MS 150 registration beginning Oct. 12. Registration for the 2012 Bike MS: Sam’s Club is scheduled to open Oct. 25. To confirm registration dates – and to sign up to ride, volunteer or donate – visit bikeMStexas.org. The BP MS 150 rolls out April 21-22, 2012. The Bike MS: Sam’s Club is May 5-6, 2012.

National Multiple Sclerosis Society Lone Star Chapter 8111 North Stadium Drive, Suite 100 Houston, Texas 77054


Fall 2011 MSConnection: Lone Star