Spring 2013 South Central MSConnection
Personal stories, program updates, research milestones and more are in this edition of MSConnection, a free quarterly magazine from the National Multiple Sclerosis Society for persons affected by MS in Arkansas, Louisiana, New Mexico, Oklahoma and Texas.
M o v ing T o w a r d A W o r l d F r e e o f M S SPRING 2013 Bridget Simpson A ROLE MODEL For All In this issue: Step, Stroll, Scoot & Move with Walk MS Three Generations of Life with MS MS Activists Make Their Voices Heard Victory Reached in Medicare Settlement If You or Someone You Know Has MS Studies show that early and ongoing treatment with an FDA-approved therapy can reduce future disease activity and improve quality of life for many people with multiple sclerosis. Talk to your health care professional or contact the National MS Society at nationalMSsociety.org or 1-800-344-4867 to learn about ways to help manage multiple sclerosis and about current research that may one day reveal a cure. The official magazine of the National Multiple Sclerosis Society: South Central Arkansas • Louisiana • New Mexico • Oklahoma • Texas 1-800-344-4867 Board of Trustees Chairman ERNEST JOHNSON Houston, TEXAS Treasurer DON McCormack MIDLAND, TEXAS Secretary DAVID CARDER TULSA, OKLAHOMA Regional Executive Vice President Mark Neagli MSConnection Editor James Black © 2013 National Multiple Sclerosis Society: South Central The National Multiple Sclerosis Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The National Multiple Sclerosis Society assumes no liability for the use of contents of any product or service mentioned. Information provided by the Society is based upon professional advice, published experience and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. The National Multiple Sclerosis Society recommends that all questions and information be discussed with a personal physician. We mobilize people and resources to drive research for a cure and to address the challenges of everyone affected by MS. MS STOPS PEOPLE FROM MOVING WE EXIST TO MAKE SURE IT DOESN’T. JOIN THE MOVEMENT Spring 2013 Volume 7 • Issue 2 Welcome to the MSConnection: South Central Edition We’re turning a new page in keeping you connected. As research and the mission of the National MS Society progress, MSConnection is also evolving. This issue marks the latest step in uniting the strengths and resources of our five South Central states – Arkansas, Louisiana, New Mexico, Oklahoma and Texas – into one quarterly publication. In this and every edition, you’ll find local, regional and national news and features as provided by Society staff, volunteers and contributors across our five-state area. That includes updates on MS research and drugs in development, round-ups of happenings in your area, profiles on MS activism to affect legislative change, and personal stories of people from all walks of life who face the daily challenges of multiple sclerosis. We’re united in stopping multiple sclerosis and MSConnection is your regional resource on our shared journey. South Central Offices Arkansas Little Rock 1100 N. University, Ste. 255 Little Rock, AR 72207 Phone: 501-663-8104 Louisiana Tulsa 4606 East 67th St., Ste. 103 Tulsa, OK 74136 Phone: 918-488-0882 Texas Houston 8111 N. Stadium Drive, Ste. 100 Houston, TX 77054 Phone: 713-394-2900 Lubbock 3610 22nd St., Ste. 301 Lubbock, TX 79410 Phone: 888-999-7992 Midland 1031 Andrews Highway, Ste. 201 Midland, TX 79701 Phone: 432-522-2143 San Antonio 9830 Colonnade Blvd., Ste. 130 San Antonio, TX 78230 Phone: 210-694-3200 Metairie/New Orleans 4613 Fairfield St. Metairie, LA 70006 Phone: 504-322-3790 New Mexico Amarillo 6222 Canyon Drive Amarillo, TX 79109 Phone: 806-468-8005 Austin 9600 N. Mopac, Ste. 150 Austin, TX 78759 Phone: 512-340-2700 Dallas 2105 Luna Road, Ste. 390 Carrollton, TX 75006 Phone: 469-619-4700 Fort Worth 4086 Sandshell Drive Fort Worth, TX 76137 Phone: 817-306-7003 Albuquerque 3540 Pan American Fwy NE, Ste. F Albuquerque, NM 87107 Phone: 505-243-2792 Oklahoma Oklahoma City 730 W. Wilshire Blvd., Ste. 103 Oklahoma City, OK 73116 Phone: 405-488-1300 Moving Toward A World Free of MS 3 GettingConnected Contact Us Let us know what you think about news and topics covered in MSConnection! If you’d like to comment on a story, share your photos, submit news or letters, or otherwise get in touch with us, we’d love to hear from you. Letters and written submissions may be edited for length and publication style. Email: email@example.com Mail: James Black National MS Society 8111 N. Stadium Drive, Ste. 100 Houston, TX 77054 Phone: 713-394-2964 Toll-free: 1-800-323-4873 Fax: 713-394-7422 Get Connected with Online Community You can join the conversation from the convenience of your home with the Society’s online MS community at www.MSconnection.org. Connect with free, easy access to resources like updated blogs, group discussions, photos, videos and more. You’ll learn about topics that are important to you, connect with others, and have expert MS information and opinions at your fingertips. Volunteer to Make a Difference Volunteering is always in season at the National Multiple Sclerosis Society. Volunteer opportunities are available for many talents and skills, and for both one-time and ongoing activities. Volunteering with the Society is a great activity for individuals and families, as well as groups from schools, churches and companies. Many corporations and organizations volunteer with the Society as a team-building experience. For information on volunteering in Arkansas, Louisiana, New Mexico, Oklahoma or Texas, visit www.volunteerMS.org or call the National MS Society at 1-800-344-4867. Plug into Local Careers with the National MS Society To search current career opportunities with the Society office near you, visit www. nationalMSsociety.org and click the “About the Society” link at the top of the page, then the “Careers” tab on the following Web page’s left-hand navigation menu. Make Friends and Share Experiences with Self-Help Groups The National MS Society’s SelfHelp Groups are fulfilling ways for persons with multiple sclerosis, their families and friends to meet others affected by MS. While most groups meet inperson, other groups connect online or by telephone. Group meetings provide settings to share common experiences and concerns, network with others, give and get emotional support, and receive MS-related information from peers and guest speakers. Self-Help Groups are facilitated by trained Society volunteers. To learn more about in-person, online or teleconference Self-Help Groups, call the Society at 1-800344-4867. Offices Closed for Upcoming Holidays This spring, Society offices will be closed March 29 for Good Friday; and May 24 (half-day only) and May 27 for Memorial Day. 4 MSConnection • SPRING 2013 Tell Us About... Your Favorite Travel Destination Summer will be here before we know it and that means travel plans are in store for many people across our five South Central states. For our summer edition, we want to hear from you: When you travel, where do you like to go? What’s been your favorite or most memorable destination (and why)? What tips have you learned that can come in handy for fellow travelers with MS? Share your travel memories, suggestions, tips and photos by April 12 via email at firstname.lastname@example.org or send a letter to MSConnection Editor James Black, National MS Society, 8111 N. Stadium Drive, Ste. 100, Houston, Texas 77054. We want to hear from YOU! What’s on your mind when it comes to MS? We want and appreciate your feedback, ideas, stories and letters to share. You know you’ve got something to say, so here’s your chance. Contact MSConnection Editor James Black via email at email@example.com or by phone at 713.394.2964, or toll free at 1.800.323.4873. SOUTH CENTRAL M OV I N G TOWA R D A WO R LD F R EE O F M S Moving Toward A World Free of MS 5 AWA R E N E S S Where In South Central...? Answers to the questions are on page 31. by James Black re you ready to give your brain a fun workout? Put on your thinking cap and test your knowledge of the states that make up the National MS Society’s South Central region. The answer to each question will be one of our five South Central states: Arkansas, Louisiana, New Mexico, Oklahoma or Texas. Good luck! 6 MSConnection • SPRING 2013 A 1 What state has the only Capitol in the United States with a working oil well on its grounds? The longest continuous bridge over water is located in what state? What South Central state is considered one of the “Four Corner States”? Where will you find the oldest national forest in the South? One of only two U.S. mobile national monuments can be found in what South Central state? Flags of six different nations have flown over which state? What state is home to the world’s largest international hot air balloon fiesta? The shopping cart was invented by a resident of which state? 9 What state boasts the largest herd of whitetail deer in the United States? Magazine, this state’s highest point at 2,753 feet above sea level? state? 17 The town of Jean Lafitte 18 Which state boasts a in which state was once a hideaway for pirates? Capitol building seven feet higher than the U.S. Capitol in Washington, D.C.? highest capital city in the United States? State? 2 3 10 Where will you find Mount 11 Smokey Bear is from what 12 Which state hosts the World’s Championship Duck Calling Contest, which is also the longestrunning calling contest in history? States to be bombed during World War II is located in what state? Where was the world’s first rodeo held? Cowboy Hall of Fame? the union that does not have counties? 19 Which state is home to the 20 Where is The Natural 21 Where was the first traffic yield sign in the United States? 4 5 13 The only city in the United 22 Want to see a desert that’s not made of sand? You’ll find it in this state. 6 7 14 23 In what South Central state was the first golden railroad spike driven by a woman? Capital of the World”? 15 Where is the National 24 Where is the “Folk Music 25 What state is home to more species of bats than any other part of the United States? 8 16 What is the only state in See the States with Free Resources Want to learn more about everything that makes our South Central states such incredible places to live, work and play? Visit the following state websites for details on things to do, places to stay, upcoming festivals and events, tasty places to eat, and free vacation planning guides. www.Arkansas.com or call 1-800-NATURAL www.LouisianaTravel.com or call 1-800-99-GUMBO Arkansas www.NewMexico.org or call 505-827-7336 www.travelOK.com or call 1-800-652-6552 New Mexico Oklahoma Louisiana www.TravelTex.com or call 1-800-452-9292 Moving Toward A World Free of MS Texas 7 EVE N T S Kids Round Up Cattle To Beef Up Benefit Y outh from all over Texas and parts of Oklahoma came together for the 1st Riley Round-Up for MS this past December. Hosted by Jim Riley and Ivey League Cattle Shows, the event in Denison, Texas consisted of a cattle show and a silent auction with proceeds benefiting the National MS Society. Riley has always had a strong passion for raising, showing and selling cattle. Diagnosed with multiple sclerosis more than five years ago, he credited the work ethic and lessons he learned raising and showing livestock as a youth for his ability to fight his MS today. Putting on a cattle show as a benefit for MS, he said, seemed like a natural way to put his passion to work to help others. The two-ring, one-day event attracted 195 head of cattle shown by youth in 4-H and FFA who competed for a multitude of awards and prizes. A large turnout of 600 Riley Round-Up for MS organizer Jim Riley presented Callie West with the award for Overall Grand Champion Heifer at the Denison, Texas fundraiser. people attended the inaugural Riley Round-Up for MS. Money raised from livestock show entries and the silent auction – which included a Resistol hat autographed by country music artist George Strait and a signed collectible from former Dallas Stars player Mike Modano – allowed Riley to contribute $8,450 to the National MS Society. Thanks to his hard work and the success of his initial Round-Up, Riley is looking forward to the next one. The 2nd Annual Riley Round-Up for MS is planned for Dec. 7, 2013 at Loy Lake Park in Denison, Texas. Contributor Jim Riley said he one day plans to hold an even bigger event to raise money for MS research. To learn more or to contact him, visit www.facebook. com/cattlecards. 8 MSConnection • SPRING 2013 GET INVOLVED 2 Wheels, 5 States, 9 Rides: Bike MS is Ready to Roll F or cyclists and those seeking a personal challenge, Bike MS is the premier fundraising cycling series in the United States. This year, thousands of cyclists are joining the National MS Society to saddle up to fuel multiple sclerosis research, programs and services. The 2013 Bike MS season runs from mid-April to October, with nine Bike MS rides throughout Arkansas, Louisiana, New Mexico, Oklahoma and Texas. For information on the 2013 Bike MS ride near you – including how to participate as a cyclist or volunteer – visit www.bikeMS.org today. Oklahoma Hosts “Women Treating Women: The MS Connection” Forum n April 5, the Oklahoma Medical Research Foundation (OMRF) will host a special conference for female patients and families affected by multiple sclerosis. Titled “Women Treating Women: The MS Connection,” the forum will present a unique opportunity to recognize the contributions of women physicians in caring for patients with chronic diseases. “Together, we will discuss new treatment options and hear from a multi-disciplinary panel on specific problems related to MS,” said conference organizer Dr. Farhat Husain, neurologist at OMRF’s Multiple Sclerosis Center of Excellence. The featured speaker is Dr. Anne Cross, the Manny and Rosalyn Rosenthal/Dr. John Trotter MS Center Chair in Neuroimmunology and professor of neurology at Washington University at St. Louis. Other speakers and panelists include Drs. Tania Reyna and Phebe Tucker from the University of Oklahoma Medical Center, physical therapists, and case managers. O “Women Treating Women: The MS Connection,” is a free program and open to the public, although it is limited to 80 attendees. To register, visit https:// omrfonlinegiving.sagefundraisingonline.com/omrfms today. MS Entrepreneurs This event is made possible because of a grant from the National Multiple Sclerosis Society’s MS Entrepreneurs program. Believing that a bright idea can change the future for people living with MS, the MS Entrepreneurs program awards grant money to individuals so they can make each idea a reality. Do you have an idea to help solve the challenges faced by people living with MS? The next MS Entrepreneurs deadline is April 15, 2013. Learn more by visiting www.MSentrepreneurs.org. Moving Toward A World Free of MS 9 GET INVOLVED Step, Stroll, Scoot and Move with Walk MS M ore than 20 Walk MS events are planned this spring throughout Arkansas, Louisiana, New Mexico, Oklahoma and Texas. Walk MS is the rallying point of the MS movement and showcases our South Central communities coming together to raise money for research and services. Walks are festive, family-friendly events held in accessible locations. Families, friends, coworkers, students and neighbors team up for the MS mission. Refreshments and entertainment are provided. Many sites welcome our leashed four-legged friends. Where can I register, volunteer or donate? You can get involved by visiting www.walkMS.org to find your local Walk MS. Is there a registration fee? No. You don’t have to foot a registration fee to participate in Walk MS. I use a stroller or walker for mobility. Can I take part in my local Walk MS? Yes! No matter how you like to strut your stuff, Walk MS is an allaccessible event for you. I’m participating and my family will join me. Should they register? Yes. All walkers, regardless of age, must register to participate in Walk MS. This helps each participant qualify for fundraising incentives, including the $100 minimum to receive a snazzy new 2013 Walk MS T-shirt. Can my child (12 or younger) participate in Walk MS? Yes. Walk MS is a family event for all ages. Youngsters really get a kick out of the pre- and post-walk activities. Can I run or jog the Walk MS course? Yes. Walk MS is all about getting a move on. If you feel the need for speed, go for it. 10 MSConnection • SPRING 2013 To register, volunteer or donate – and to confirm times, dates and locations – visit www.walkMS.org. You’ll also find useful information online, such as route maps, photos, parking directions, fundraising tools, lists of top fundraisers and top fundraising teams, walker spotlight profiles, and more. Walk MS connects everyone impacted by multiple sclerosis. When you participate in this community feat of the feet, the funds you raise give hope to 400,000 people living with MS in the United States. Walk MS participants have been setting the pace since 1988; to date, they’ve raised more than $770 million to support life-changing programs and research. South Central Walk MS Events As this issue went to print, Spring 2013 Walk MS events are planned for the following dates and locations: April 6: Texarkana April 13: Little Rock April 20: Springdale April 27: Jonesboro May 4: Hot Springs April 6: Shreveport-Bossier City April 13: Baton Rouge April 6: Las Cruces April 13: Albuquerque April 20: Roswell April 27: Santa Fe April 13: Tulsa April 20: Lawton April 27: Garber May 4: Oklahoma City March 2: Dallas, Fort Worth and San Antonio March 9: Corpus Christi March 23: Amarillo and El Paso April 6: San Angelo April 20: Midland May 4: Lubbock Arkansas Louisiana New Mexico Oklahoma Texas Moving Toward A World Free of MS 11 AWA R E N E S S MS Awareness Week is March 11-17 10 Ways You Can Raise MS Awareness by Brandi Moore D uring MS Awareness Week March 11-17, people all over the nation will come together to share, educate and build awareness. MS is a destroyer of connections. It disrupts signals, separates minds from bodies and pulls us away from each other. It’s only fitting that connection is its greatest enemy. What if we were able to connect everyone who has MS with those who treat and research the disease? What if everyone affected by or interested in MS would stand together and work as a team to overcome this disease? Raising MS awareness can be easy and fun. Here are 10 suggestions to get you started, just in time for National MS Awareness Week March 11–17: 1 2 Write a letter to your local newspaper about the importance of MS awareness. 6 7 Sign up for a 2013 Bike MS fundraising ride. Orange is the color of the National MS Society and the MS movement. During MS Awareness Week, wear something orange. Get your friends and family to join you; nothing stands out quite like a group of people clad in bright orange. Make a donation to the Society to support research and programs for persons with MS. 8 9 10 Call five friends to remind them about MS Awareness Week. 3 4 Call or e-mail your local, state and national legislators about issues important to persons with MS. Visit the Society at www. nationalMSsociety.org to learn about new MS advances. Volunteer at your local Society office. Connect with others affected by MS at www.MSconnection.org. 5 12 Sign up for an upcoming Walk MS event. Brandi Moore is a Regional Manager, Communications and PR, with the National MS Society. Based in the Society’s Tulsa, Okla. office, she can be reached at firstname.lastname@example.org. MSConnection • SPRING 2013 he Security Service Charitable Foundation recently selected the National MS Society’s Scholarship Program as the recipient of a $5,000 donation. “We are extremely grateful for this gift from the Security Service Charitable Foundation,” said the Society’s Tony Ralf. “This investment will help highly qualified students who have been diagnosed with MS or who have a parent with MS achieve their dreams of going to college.” Headquartered in San Antonio, Texas, Security Service is an industryleading financial institution with more than 900,000 members in Texas, Colorado, Utah and around the world. The credit union is among the top 10 credit unions in the United States and is the largest in Texas. Security Service Donation Supports Scholars Affected by MS T AWA R E N E S S Pictured at the check presentation in San Antonio, Texas are Jim Laffoon, Security Service Federal Credit Union (SSFCU) president and Charitable Foundation president; Anne Hoeffner, SSFCU assistant vice president and National MS Society board member; Rebecca Gray, National MS Society Programs and Services Coordinator; and Tony Ralf, National MS Society Regional Vice President of Development. Moving Toward A World Free of MS 13 LIVING WITH MS Three Generations of Life with MS by April Brownlee “I didn’t plan my wedding when I was seven, so I guess I kind of messed up on that. I didn’t have any idea what goes into it,” laughs 21-year-old Chelsey Anderson, who is looking forward to getting married and settling into life. But for Chelsey, settling in may not mean that things ever actually settle down. She was diagnosed with multiple sclerosis at 16. At the same time that many of her classmates were focused on homecoming and college applications, Chelsey was battling her way back from her first exacerbation—a severe one. “I’m just now getting back to where I was physically before I was diagnosed with MS, and it’s been four years,” she says. “I went from your average varsity volleyball and basketball player to blind and paralyzed from the waist down. My lungs collapsed and my organs started to shut down, all within about seven hours.” But Chelsey’s mom, Kelli, was there, is there and will be there—every step of the way. She knows MS from the inside out, as she also has the disease, just like her own mother—Chelsey’s grandmother, Pat. That makes for three generations passing down knowledge of the disease to the next. “When I tell people, they don’t believe it. I should’ve bought a lottery ticket the day I got diagnosed,” Chelsey says. A Rich History Today, better education, knowledge and diagnostic tools make for earlier diagnoses. Case in point: Chelsey was diagnosed at 16, Kelli at 26, and Pat at 36. And when Pat was diagnosed, there were no disease-modifying treatments. “She told me when she was first diagnosed with MS, they used to put you in a hot bath and have you stand up and then they’d check your symptoms,” Chelsey says. Their family history is rich, with a deep understanding of what they have already been through and how they’ll face the future head-on together. “I’m glad my mom knew not to baby me,” says Chelsey. “You have to be strong when you have MS. It was tough love, but that has helped me tremendously. Every now and then I’ll feel sorry for myself and my mom will say ‘don’t do that.’” While it’s been a bumpy road over the years, with 14 MSConnection • SPRING 2013 From left, Pat, Chelsey and Kelli Anderson face MS as a family. lots of ups and downs, the three of them find the humor in their unique situation. “We joke that it’s my grandma’s fault that all three of us have MS. Gee, Grandma, thanks,” says Chelsey. For this family, laughter is a superpower. “Always keep moving. Never stop. If you slow down or stop you will turn to stone. And laugh every day. The key to life is laughter,” Kelli says. The Next Generation These days, as Chelsey flips through bridal magazines, looking for the perfect dress to wear for her marriage to Shay, a firefighter, she is mindful of where she’s been— and where she’s going. And one question certainly stands out from the rest: What if someday her child is also diagnosed with MS? “I’d definitely be prepared and stay strong for them like my mom did for me,” she says. “Life is a rollercoaster. I never know what I’m going to get, so I might as well make the best of it. I tell my friends I’m just going to be the best at MS. Enjoy life. Don’t sweat the small stuff.” And wiggle your toes. “That’s the first thing I do every morning,” Chelsey says. “I wiggle my toes to make sure I haven’t lost that.” Then she heads off either to her job as a nanny or to college, where she is majoring in public relations. She hopes to combine her education, her very personal experiences with MS, and all the things she’s learned from a mother and grandmother who walked the same road long before her. “When I think about writing a book on my life, I just see us all just doing what we’re doing now … staying positive and staying together.” April Brownlee is a senior development manager for the Society in Amarillo, Texas, where she produces Walk MS and Bike MS events. Moving Toward A World Free of MS 15 Outstanding Youth in Philanthropy award winner Bridget Simpson is pictured with her grandparents, Reed and Fran Anderson. 16 MSConnection â€˘ SPRING 2013 C OVE R S T O R Y Young Philanthropist is a Role Model for All by Maggie Schold and James Black A lbuquerque, N.M. sixth grader Bridget Simpson is making big strides in the MS movement. Bridget was recently named Outstanding Youth in Philanthropy for her volunteer work promoting MS awareness and Walk MS fundraising. The award was presented by the New Mexico Chapter of the Association of Fundraising Professionals in conjunction with National Philanthropy Day. For the organization of her choice, Bridget received a check for $250, which she donated to the National MS Society. Bridget’s mother, Caitlin Anderson, was diagnosed with MS when Bridget was 5 years old. It didn’t take Bridget long to start making a profound difference. In first grade, Bridget helped create an MS Experience at her school, allowing students to learn what it might feel like to have multiple sclerosis. The following year, Bridget held a jump-rope fundraiser at her school, raising $1,000 to support the Society through her mother’s Walk MS team, the Wobbly Walkers. In 2010, Bridget went even further. She and best friend Marigold Kitzmiller, whose uncle lives with MS, formed their own Walk MS team, the Junior Wobbly Walkers. The team has raised $3,448 in three years. Bridget was the #15 top fundraiser for Walk MS in New Mexico in 2012; her Junior Wobbly Walkers team was the #14 top fundraising team, surpassing her mother’s original team for the first time. In 2012, when Bridget moved to a new school, she raised awareness by speaking to four classes about MS. She also distributed change collection bags – labeled “Your Spare Change will Change Lives” – to all students to support MS research. Bridget and her family continue to volunteer for the Society’s Walk MS and Bike events, with her father, David Simpson, serving on the Bike MS committee. In addition to her volunteer work with the National MS Society, Bridget trains assistance dogs through Assistance Dogs of the West. Maggie Schold is the Society’s Senior Development Manager in New Mexico. She can be reached at email@example.com. MSConnection Editor James Black can be reached at james.black@ nmss.org. First held in New Mexico in 1987, National Philanthropy Day (NPD) recognizes the daily contributions that individuals and organizations across the world make to causes and missions. More than 100 chapters of the Association of Fundraising Professionals International play key roles to encourage giving and volunteering. NPD activities highlight each community’s top donors, volunteers, foundations, and other individuals and organizations involved with philanthropy. For more information, visit www.afpnet.org. Moving Toward A World Free of MS 17 LIVING WITH MS A Moment of Blips by Laurie Clements Lambeth A t a recent appointment, I listed my cognitive lapses over the past year. I have mild cognitive impairment; I was tested after 25 years with MS and suspicions that I wasn’t quite up to my old speed of thought. Dividing my attention, shifting focus and finding words have steadily grown more difficult. But three recent events had felt different: sudden, strange, like the seizure I had nearly 20 years ago—misfires, blips, spikes on some tiny chart kept by little scientists in my brain wearing white lab coats and horn-rimmed glasses. The charts ribbon out of their little machines, and when a blip occurs, the scientists rip them from the machines and conceal them in their lab coat pockets. So I asked the physician’s assistant the question we all ask at some point: “Is this normal?” Supermarket Blip My husband was somewhere behind me, getting milk while I ducked the supermarket scooter into a quiet aisle. He approached and said, “Chobani’s on offer.” “Chobani?” I said. “You know, Chobani.” “What... is... Chobani?” I asked slowly. His face went from quizzical to startled. I play little practical jokes sometimes, and he thought at first this was one of them. But then he realized I was far from joking. I was confused. “You really don’t remember what Chobani is?” he asked. “No.” I panicked. “Is it bread?” I thought of another word that begins with a ch- sound, but couldn’t place it. Ciabatta. Two years before, I had come home from a trip to a writer’s retreat telling him all about the Chobani Greek yogurt I had for breakfast while I was there. So you can imagine his surprise that I did not recognize the name. I wanted to shrink into myself. How strange it felt, as though a shell of silence had formed around me and nobody could come in or let me out. The “Oh...” Blip I forgot. Please hold. I need to find my list in my purse to jog my memory. Listen to some Muzak while you wait, or What The Symptoms Mean Unusual symptoms should be reported to your doctor. They may signify MS-related disease activity that your doctor may wish to treat, or they may be unrelated to your MS. For example, changes in cognition may be caused by many different factors, including MS, depression, stress, medications (for example, some bladder medications), or aging. Your doctor may refer you to a cognitive specialist/neuropsychologist to help you determine the cause of whatever changes you may be experiencing. Rosalind Kalb, Ph.D., Vice President of Clinical Care at the National MS Society 18 MSConnection • SPRING 2013 talk amongst yourselves. La la la... Found it: my list says, “time concept.” I was scheduled for a haircut and color at 1:00 p.m. It takes me half an hour to 35 minutes to drive to the salon. At 11:45 I was answering email and feeling as though I had plenty of time. I took a shower. Then it was 12:20. I dressed, did my makeup. I took my time. Then I glanced at the clock. How did it become 1:09? There was no way I could make it. I was beyond late. At 12:15 I should have been thinking of leaving. At 11:45 I should have realized I was running late. I couldn’t tie it together. Imagine two strands of yarn. One is the hours ticking by, time itself, and at 1:00 I had my appointment. The other strand of yarn represents the amount of time needed to prepare and drive. The problem is, in my head the two strands of yarn were very far apart, and parallel. I could not connect them. They were loose and felt tiny in my mind, like when my hand is weak or shaky and I can’t grasp a small object. Parking Blip At the vet’s office there’s a steep little hill you need to accelerate to climb. At the top I eased the brake. The car sped up. Why aren’t we stopping, I thought. Something’s wrong with the car. I pressed harder. We headed faster toward the building. Just as I reached for the emergency brake I saw my foot firmly pressing the gas pedal, not the brake. I lifted my foot and slammed on the brake just in time. It took me two days to tell anyone. No harm, but I was shaken, ashamed, confused. When I asked if having cognitive blips is “normal,” the physician’s assistant paused a moment. “It’s—common,” she said, her voice measured and lifting. And I was grateful: more common than normal, strange but shared. Multiple Sclerosis A Course for Occupational and Physical Therapists PI-OT Webinar Program Series Join us this spring for a live webinar series to provide rehabilitation professionals with updated information on the diagnosis and treatment of MS and evidence-based management of systems. Every Monday night March 11 - April 8 5:30 - 6:30 p.m. CST Learn more and access recorded webinars by visiting www.MakeYourMarkMS.org/HealthProfessionals Laurie Clements Lambeth’s first book Veil and Burn was selected for the 2006 National Poetry Series. To learn more about her work, visit www.laurieclementslambeth.com. Moving Toward A World Free of MS 19 ADVO C AC Y Make 20 MSConnection • SPRING 2013 MS Activists e Their Voices Heard in the Halls of Power by Kelly Jo Tullberg Moving Toward A World Free of MS 21 A cross the South Central region, state legislatures have convened with the largest number of new members in some time, bringing a new challenge when it comes to MS advocacy. For some states, nearly half of the legislators are entering the legislative session not knowing anything about health policies and multiple sclerosis. Now more than ever it is critical for individuals to connect with their state legislators and educate lawmakers about MS and the issues. Changes in Legislatures Texas witnessed the largest contingent of new members in 40 years; out of the 150 members of the House of Representatives, 43 are “freshman” legislators and 24 are “sophomores.” Arkansas saw Republicans assume control of both chambers for the first time since Reconstruction and, along with it, some staggering numbers – 40 of the 100 members in the House are new, as are 15 of the 35 State Senators. New Mexico saw a third of the House and Senate replaced, and all five of the South Central states experienced new leadership and changes to standing committees. These changes create both a need and a great opportunity for activists to begin a relationship that they can build on for future interactions. New legislators could potentially be around for years, and MS activists who are involved now can continue to build on that foundation and significantly impact public policy. These connections can provide lawmakers with crucial information that helps them better understand the needs of people living with multiple sclerosis. “I became involved in advocacy because I want to share my experience with MS in a way that helps others who are dealing with Todd Bisio it,” said Todd Bisio, a member of the New Mexico Government Relations Committee. “Personal connections are extremely important and our dedicated MS activists know how to make the most of them. The connections we make within our communities will make us successful in strengthening our voices at the local, state and national levels.” Public Policy Conferences As the state legislatures convened this year, MS activists also came together in state Public Policy Conferences to learn, plan and discuss policy priorities. Held in January and February in Texas, New Mexico, Arkansas and Oklahoma, and planned for March in Louisiana, these conferences are one-day events that include training and Arkansas MS activists, shown here with Lt. Governor Mark Darr, visited the State Capitol in February to discuss Medicaid Expansion and MS priority legislation sponsored by Sen. Jon Woods. This legislation would require health plans to maintain terms of prescription drug coverage for the length of an enrollee’s contract and provide notice to enrollees in advance of critical changes to their prescription drug plans. Thank you, MS activists! 22 MSConnection • SPRING 2013 Liz Wray, Dennis Cronin and Stephanie Pierpont took part in the Society’s 2013 New Mexico Public Policy Conference. meetings at the state Capitol. Participants met with their legislators to share their stories, educate them about MS and ask for support on priority legislation. Jennifer Godwin, Co-Chair for the Arkansas Government Relations Committee, finds inspiration in meeting as one voice at the Capitol. “Our meetings with legislators were more than just requests,” she said. “It’s a way for us to connect with each other and ensure that lawmakers kno sw the names and faces and stories of MS.” For individuals unable to travel to the Capitol, there are still many opportunities year-round to connect from home. Interested parties can become MS advocates by visiting www.nationalMSsociety.org/ advocacy and clicking on the “Be an MS Activist” tab. Once signed up to be a part of the MS Action Network, Jennifer Godwin participants receive news and updates on health policies impacting people with MS, and instructions on how to take action on legislation that matters. An Activist’s Most Valuable Contribution Becoming an MS activist does not have to require a lot of time or training. The most valuable contribution that MS activists can make – whether they have MS or are family members, caregivers, physicians or researchers – is to be willing to tell their stories about their experience with MS. Legislators want and need to hear from their constituents about the issues that are important to them, and welcome their participation in the process. National MS Society staff and experienced activists are available to mentor new participants and offer support, training, assistance with scheduling meetings and education about the issues. At the state level, MS activists have been successful at providing important input on issues such as accessibility, health care coverage, employment, transportation, long-term care resources and more. Erin Hulin, an MS activist from Erin Hulin Louisiana, summed it up best. “All it takes to be an activist is a willingness to share your story and a desire to make things right,” said Erin. “If you have both of those things, you can make a difference for those living with MS and other disabilities.” Kelly Jo Tullberg is a Marketing Manager with the National MS Society: South Central. She can be eached at firstname.lastname@example.org. Become an MS Activist Contact us to learn more about how you can become an MS activist in your community. Texas Simone Nichols-Segers 512-340-2707 Arkansas & Oklahoma Mireya Zapata 512-340-2703 New Mexico Vicki Kowal 505-243-2792 Louisiana Crystal Smith 504-322-3787 Moving Toward A World Free of MS 23 ADVO C AC Y What the New Legislation Means for Persons with MS by Ted Thompson A fter intense negotiations in January, the American Taxpayer Relief Act was signed into law, which averted the so-called “fiscal cliff,” a drastic convergence of increased taxes and reduced spending. No more crisis, but what does the new legislation mean to people living with multiple sclerosis? What’s In The Law? Some of the health and other provisions in the new law that may impact people living with MS include: • A delay until December 31, 2013, to a scheduled 26.5% cut to Medicare physicians. • An extension to the same date of the Medicare therapy cap exceptions process, which ensures that people with MS can continue to access needed outpatient therapy services. • A delay of two months to across-the-board cuts (the “sequester”) to defense and non-defense programs, including medical research. • A repeal of the Community Living Assistance Services and Supports (CLASS) Program, a voluntary long-term insurance program intended to help maintain community residence and independence. However, the law sets up in its place a bipartisan commission tasked with developing legislative longterm care alternatives. • A limit on itemized deductions for individuals making over $250,000 a year and families earning over $300,000 per year; however, no limit or cap on charitable deductions was put in place. Make Your Voice Heard The 113th Congress was sworn in and commenced January 3, 2013. With the across-the-board cuts only delayed for two months and the debt limit not increased, members of Congress will hit the ground running. Sign up at www.nationalmssociety.org/MSActivist, and follow the MS Activist blog (www.MSactivist.org) and Twitter, @MSActivist to stay tuned for opportunities to weigh in with your legislators over the next several weeks on the importance of protecting medical research and programs like Medicaid and Social Security. Ted Thompson is the Society’s vice president of Federal Government Relations. 24 MSConnection • SPRING 2013 ADVO C AC Y Victory Reached in Medicare Settlement by Marcella Durand MS activists make change happen A settlement to end Medicare’s so-called “Improvement Standard,” which denied coverage of certain treatment services to people with multiple sclerosis and other diseases, was officially approved Jan. 24 by Chief Judge Christina Reiss of the U.S. District Court in Vermont. The settlement to end the standard was reached in a nationwide lawsuit in which the National MS Society was a plaintiff. The Society had joined other organizations including the Parkinson’s Action Network, the Alzheimer’s Association, United Cerebral Palsy and Paralyzed Veterans of America in a class-action suit to challenge the Centers for Medicare and Medicaid Services (CMS) over the standard. The standard had denied Medicare coverage for services such as skilled nursing facilities, home health and outpatient therapy benefits like physical or occupational therapy to Medicare beneficiaries living with MS if they did not show improvement. However, these often- expensive services can be critical to prevent decline or maximize independence. The settlement’s approval effectively means that any denial citing the “improvement standard” can be appealed moving forward and even dating back to Jan. 18, 2011 (the date the case was filed). CMS is now tasked with revising its Medicare Benefit Policy Manual and other policies, guidelines and instructions to ensure that Medicare coverage is available for skilled services in home health, nursing home and outpatient settings. CMS must also develop and implement a nationwide education campaign to ensure beneficiaries with chronic conditions are not denied coverage for critical services. For more information, visit www.MSActivist.org. Marcella Durand is the content planning and development manager for the Society. Moving Toward A World Free of MS 25 R E S EA R C H • In the world’s largest meeting dedicated to MS research, more than 7,000 scientists convened in Lyon, France to present more than 1,250 studies and findings at the European Committee for Treatment and Research in MS (ECTRIMS) Last year, the Society invested $44 million in more than 350 new and ongoing research projects. This was part of the comprehensive, three-pronged strategy aimed at stopping MS, restoring function and ending MS forever. Progress Toward Stopping MS Research in 2012 aimed at stopping multiple sclerosis included: • Funding of clinical trials, such as testing whether vitamin D or the sex hormone estriol can reduce MS immune attacks; determining if treatments currently available for other disorders – such as riluzole, a treatment for Lou Gehrig’s disease, or phenytoin, an epilepsy treatment – or the antioxidants lipoic acid or green tea extract can protect the nervous system from damage; and supporting a group in the United Kingdom to conduct clinical trials of neuroprotective drugs in secondary-progressive MS. • New projects focused on discovering biomarkers to aid better diagnosis and treatment decisions. • Collaboration in a cross-disease drug screening initiative to discover the potential of some compounds to stop nerve degeneration and protect the brain from harm. • In an early step toward personalized medicine in MS, researchers discovered that differences in active genes from blood samples can help group people with MS into categories that predict disease course and response to therapy. • The Federal Drug Administration (FDA) approved the once-daily pill Aubagio as a disease-modifying therapy for MS; it became available for prescription in October 2012. Research Milestones in 2012 Recapping a Milestone Year of Sweeping Advances in MS Research The National Multiple Sclerosis Society continues to be the leader in propelling MS research and treatments. In a review of recent progress, the Society reported that research advanced on many fronts in 2012: • A second oral therapy for relapsing forms of MS was approved, with other emerging treatments progressing through the development pipeline. • 2012 saw the launch of the International Progressive MS Collaborative, the largest effort to date to speed research to stop progressive forms of MS. • Researchers discovered what could be a target of the immune attack in people with MS, which may lead to new understanding of the disease and new treatment strategies. • The first human trial of an experimental therapy targeting myelin repair was completed. • Progress was made in restoring functions using innovative rehabilitation techniques, such as memory enhancement using stories and imagery to solidify learning, and improving balance and mobility with specific exercises. • Scientists advanced in uncovering MS triggering factors, which can bring us closer to finding ways to prevent the disease. 26 MSConnection • SPRING 2013 • Two potential therapies were submitted for FDA review: Biogen Idec applied for approval of BG-12, an oral therapy for relapsing MS; and Genzyme applied for approval of alemtuzumab, which is given by a cycle of IV infusions once per year to treat relapsing MS. • A 24-week stress management program was found to significantly reduce disease activity as shown on MRI scans. • Scientists found that a blood-clotting protein called fibrinogen may play an early role in triggering inflammation by cells called microglia that damage nerve fibers. If confirmed, targeting the interaction of fibrinogen and microglia may be a new strategy for stopping MS damage in its tracks. • Researchers developed an innovative strategy for selectively inhibiting the immune attack in MS using tiny nanoparticles to reduce disease activity; the research team is currently planning a phase I clinical trial of this new technology. Progress Toward Restoring Function The Society’s Discovery and Fast Forward research programs supported new and ongoing initiatives such as: • Breakthrough research to discover new targets to stimulate myelin repair and early testing of new approaches to treat MS symptoms. • Unlocking the potential of adult skin cells and umbilical cord cells as sources of nervous system repair cells. • A pilot program tapping MS-dedicated funds from the Illinois Lottery, with a focus on nervous system repair and rehabilitation approaches. • Researchers found that a six-week balance and eye movement-focused exercise program improved balance, reduced fatigue, and reduced disability due to dizziness or disequilibrium, typically lasting for at least four weeks. • A study found that a progressive resistance weight training program improved walking and quality of life in women with MS. • A new collaboration funded advancement of C-21191, a substance with the potential for treating spasticity and pain in MS. • A study used advanced MRI analysis to determine how regions of the brain associated with pain are affected by multiple sclerosis. • A study at Mississippi State University found that Hispanics/Latinos with MS experienced more pain, fatigue, cognitive problems and mental health problems than the general MS population. Progress Toward Ending MS Forever To drive efforts to understand what triggers MS and ways to prevent it, the Society: • Supported several new research projects to understand how certain risk factors contribute to a person’s likelihood of developing MS and to investigate how bacteria naturally found in the human body may influence disease activity. • Convened an international summit on vitamin D in MS treatment. • Renewed funding for an enhanced multiple sclerosis DNA resource bank to better understand the genes that make people susceptible to MS and that may also control the course of a person’s MS. • Launched a $100,000 annual prize to recognize scientists whose inventive work is leading to measureable MS research progress. Moving forward, the significant results and progress of 2012 promise more options in 2013 for everyone affected by multiple sclerosis. Moving Toward A World Free of MS 27 R E S EA R C H Research Round-Up Obesity Linked with Greater MS Risk in Girls Researchers report that being overweight or obese was associated with an increased risk of developing MS in girls. Dr. Annette Langer-Gould and colleagues at Kaiser Permanente of Southern California in Pasadena reported their findings in a January issue of Neurology. Dr. Langer-Gould’s team undertook the MS study based on the dramatic increase in obesity over the past several decades and obesity’s link with an increase in immune system activity. Compared to girls who were not overweight, the risk of developing MS was about one-and-a-half times higher for overweight adolescent girls and more than three times higher for girls who were extremely obese. The increased risk with obesity was not found in boys; researchers believe the higher risk in adolescent girls may be associated with increases in hormones such as estrogen. “If further research confirms these findings, excess weight could turn out to be a modifiable risk factor that influences the development of MS in children and adolescents,” said Nicholas LaRocca, Ph.D., Vice President of Health Care Delivery and Policy at the National MS Society. “Finding such risk factors and addressing them is a crucial step toward ending MS.” Eyes Offer Unique Window to MS Damage and Repair Researchers have found that thinning of the retina may be a window into nervous system damage. They suggest this may be useful in tracking nerve protection in MS clinical trials. Use of a simple, non-invasive technique called optical coherence tomography (OCT) has been an effective way to examine the retina to track MS damage. High Vitamin D Levels in Pregnant Women Tied with Lower MS Risk In a newly-published study, women who have higher levels of vitamin D during the first trimester of pregnancy had a lower risk of later developing MS than women with lower vitamin D levels. Further, vitamin D levels during early pregnancy did not impact their children’s chances of developing MS later on. Vitamin D is an important nutrient from food, supplements and sun exposure. Research has shown that lower levels of vitamin D are associated with higher risks of developing MS. In fact, people who live in northern latitudes and get little vitamin D from sun exposure in the winter have a higher risk of developing MS than people living in the lower, sunnier latitudes. 28 MSConnection • SPRING 2013 Researchers Recruiting Relatives for Genetic Study Researchers are currently recruiting 5,000 people who have at least one first-degree relative with MS. A first-degree relative can be a parent, sibling or child of someone with MS. The study is limited to those between the ages of 18 and 50. The goal of the study is to identify genetic, environmental and immune profiles that may increase a person’s risk of developing MS. There is no cost to participate in the study; participants can live anywhere in the United States because travel is not required for enrollment. For details on this study, contact research coordinator Emily Owen via email at bwhmsstudy@ partners.org. You can also visit the website at http:// dejager_lab.bwh.harvard.edu/ and click “Study Participation” in the left-hand navigation bar. Find Local Clinical Trials For information about clinical trials testing MS treatments, visit www.nationalMSsociety.org/ ClinicalTrials. This site includes a link to trials currently seeking participants, as well as explanations of trial phases, news of study results and more. If you do not have Internet access and need information on local clinical trials, call the Society toll-free at 1-800-344-4867. These ongoing efforts by researchers around the world reflect the rapid pace of MS research. For information on these and other research initiatives, visit the National MS Society’s research site at www.nationalMSsociety.org/research. On your tax return… make your mark to help create a world free of MS. This year, people in Louisiana and Oklahoma can make a mark to create a world free of MS. While doing your 2012 income taxes, please simply check a box on your state tax return form to make a charitable contribution to the National Multiple Sclerosis Society. Each contribution will go directly toward MS research, programs and services that support thousands of individuals living with MS. A small mark will make a big difference in the movement toward a world free of MS. Take this ad to your tax preparer, or contact the National Multiple Sclerosis Society for more information. nationalMSsociety.org | 1.800.344.4867 Moving Toward A World Free of MS 29 WELL N E S S Take Your Next Step on the Road to Wellness by Kelly Jo Tullberg F or a person living with multiple sclerosis, the road to wellness involves more than just treatment of the disease. Equally important is forming healthy habits, such as diet, exercise and stress management. Realizing the important role that exercise plays in managing MS, the National MS Society seeks to make wellness programs available through a variety of approaches. Currently, the Society’s five South Central states offer more than 45 wellness classes, including yoga, meditation, Pilates, assisted physical training, seated exercise, aquatics and therapeutic horseback riding. In 2012, more than 500 individuals participated in a program, gaining important health benefits, including improvements in cardiac health, mood, stamina and symptom management. While the benefits are impressive, not everyone can easily access these programs. With that challenge in mind, the Society wants to broaden the availability of these programs by utilizing passionate volunteers and community partnerships to expand into areas currently underserved. The Society’s Wellness Functional Team will recruit, train and support volunteers to assist in and lead efforts to expand existing wellness programs and create new wellness opportunities. If you have a passion for wellness or if you have identified a need for a wellness program in your community, there are many ways you can help: • Interested in an adaptive yoga class for your community? Check with a local church or community center that offers yoga; see if they would be interested in partnering with the Society to promote an adaptive yoga class. • Do you belong to the YMCA or a health club? Ask if they would partner with the Society to create an aquatics class for MS. • Reach out to local stables in your community to see if there is potential in offering a therapeutic horseback riding program. Always talk to your doctor before starting a new exercise program. To learn more about how you can help identify or create a new wellness program in your community, or to learn about offerings already available, please call the Society toll-free at 1-800-3444867, option 1. Kelly Jo Tullberg is a Marketing Manager with the National MS Society: South Central. She can be reached at kelly. email@example.com. 30 MSConnection • SPRING 2013 Where in South Central…? (Answers to questions from page 7) 9. Texas 10. Arkansas 11. New Mexico. The cartoon mascot for the U.S. Forest Service was created in 1944 to promote wildfire prevention and wildlife conservation. Six years later, the American black bear cub that was to become the first living symbol of Smokey Bear was found trapped in a tree during a fire in New Mexico’s Lincoln National Forest. 12. Arkansas. Stuttgart, Ark. has hosted the calling contest since 1936. 13. Oklahoma. At 12:30 a.m. on July 5, 1943, a B-17 from Dalhart Army Air Base dropped six practice bombs on the sleeping town of Boise City, Okla. Pilots performing target practice became disoriented and mistook the lights around the town square as their target. No one was killed or injured in the incident. 14. Texas. It was held in Pecos on July 4, 1883. 15. Oklahoma. It’s in Oklahoma City. 16. Louisiana. Its political subdivisions are called parishes. 17. Louisiana. 1. Oklahoma. There is an operating oil well on state Capitol grounds in Oklahoma City called Capitol Site No. 1. 2. Louisiana. Louisiana is home to the Lake Pontchartrain Causeway, connecting Metairie with St. Tammany Parish on the north shore. The causeway is 24 miles long. 3. New Mexico. It borders at the same point with Colorado, Utah and Arizona. 4. Arkansas. The Ouachita National Forest reigns as the oldest national forest in the South. 5. Louisiana. The Saint Charles streetcar line in New Orleans and the cable cars in San Francisco, Calif. are the only mobile national monuments in the United States. 6. Texas. The six nations are Spain, France, Mexico, the Republic of Texas, the Confederate States and the United States. 7. New Mexico. It’s hosted annually in Albuquerque. 8. Oklahoma. Sylvan Goldman, owner of the Piggly Wiggly supermarket chain in Oklahoma City, invented the first shopping cart in 1937. 18. Texas. The Capitol in Austin opened May 16, 1888. 19. New Mexico. The capital city of Santa Fe is 7,260 feet above sea level. 20. Arkansas. “The Natural State” is its official state nickname. 21. Oklahoma. It was created by Tulsa police officer Clinton Riggs and installed at First Street and Columbia Avenue in Tulsa, Okla. in 1950. 22. New Mexico. Despite its name, White Sands National Monument is a desert not of sand, but of gleaming white gypsum crystals. 23. Louisiana. The golden spike, commemorating the completion of the east-west Vicksburg, Shreveport and Pacific Railroad, was driven at Bossier City on July 12, 1884 by Julia “Pansy” Rule. She was the first woman to perform this ceremonial honor. 24. Arkansas. The community of Mountain View, Ark., known as the “Folk Music Capital,” preserves the pioneer way of life at the Ozark Folk Center State Park from March through October. 25. Texas How’d You Score? 21 – 25 Correct South Central super genius! You should consider trying out for “Jeopardy!” 16 – 20 Correct South Central stand-out, that’s what you are! 11 – 15 Correct You’re still pretty South Central savvy. 6 – 10 Correct Your South Central skills are somewhat so-so … 0 – 5 Correct As Mama always said, “Well, bless your heart!” Sources: 50states.com; Arkansas.com; Louisiana Department of Culture, Recreation and Tourism; Modern Language Association; New Mexico Tourism Department; Oklahoma Tourism and Recreation Department; Texas Department of Transportation Moving Toward A World Free of MS 31 National Multiple Sclerosis Society South Central Chapter 8111 North Stadium Drive, Suite 100 Houston, Texas 77054 Your bright idea can change the future for people living with MS. MS Entrepreneurs is a grant program that provides individuals with funding to create solutions for the challenges faced by people living with MS. Submit your idea for consideration by April 15, 2013. Visit MSEntrepreneurs.org to learn how. entrepreneurs presented by Kanaly Trust