Moving Toward A World Free of MS Winter 2012
Football Great Earl Campbell and Son Tyler are Unstoppable Also in this issue:
Flu Shot or Not?
Car Show Revs Up
Your State of Taxes
MS and Pregnancy
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 © 2012 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.
Winter 2012 Volume 6 • Issue 1
The Official Magazine of the National Multiple Sclerosis Society: Lone Star
It’s Time to Bare Arms and Get Shot Flu season brings not just coughs and sniffles, but the question: Should I get a flu shot or not? Because there is a much higher risk of an MS relapse due to flu than to the flu vaccine, the National MS Society generally recommends that people with MS get the shot. “Don’t wait for flu season to catch up with you,” said Rosalind Kalb, Ph.D., Vice President of the Society’s Professional Resource Center. “Discuss getting the flu shot with your doctor to protect yourself this year.” The injectable flu vaccine has been studied extensively in people with MS and is considered quite safe. It may be taken by people on an interferon medication, glatiramer acetate or mitoxantrone. It is not yet clear if the vaccine is as effective for those taking natalizumab or fingolimod. It’s best to delay vaccination for four to six weeks after the onset of any serious exacerbations. Persons with MS should avoid FluMist, a live-virus flu vaccine delivered via nasal spray.
The MSExperience Jamie Uphold, a teacher with MS at Bowie Middle School in Amarillo, shared the “MS Experience” with students in Coach Vic Henning’s health class. The MS Experience gives students a unique hands-on take of some of the everyday difficulties encountered by persons with multiple sclerosis. For example, by trying to tie shoe laces while wearing thick gloves, students realize the frustrations some persons with MS may face when performing the same task with their unencumbered fingers.
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Idea Gains Traction as First-Time Car Show Revs Up in Panhandle by April Brownlee Photos courtesy of April Hendrick Photography “I had the notion there was something more I could do,” said LaDawn Baten, a 2011 Walk MS top fundraiser for the National MS Society’s Amarillo office. Long before reaching top fundraiser status, LaDawn was your average Walk MS participant. For years, she walked because someone close to her lives with MS. She walked with her employer’s team. She raised what she could. Then, in December 2010, LaDawn was diagnosed with MS. Suddenly, she found herself wanting to take it all to another level. “Prior to me being diagnosed, I walked for my aunt, and I knew bits and pieces of what she went through so I just did it in support of her. But I think, overall, it was being diagnosed and knowing there’s no
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cure,” she said. LaDawn refocused her fundraising efforts for Walk MS 2011, scoring almost $2,000 for the cause – enough to rank her among the Top 10 fundraisers for Walk MS events in the Texas Panhandle. But it wasn’t enough for LaDawn; she and her husband, Earnie, conspired to do something bigger. “My husband came up with the idea. He’s an avid car enthusiast. He is building his first car he had in high school, which is a ‘67 rally sport Camaro. So he said, ‘Why not have a car show in Dumas?’ He thought we could get a good turnout,” LaDawn said. In August, hundreds of people flocked to LaDawn’s “DreaMS of A Cure” car show in her hometown of Dumas, a small community in the northeastern Texas
Panhandle. LaDawn estimated she put in close to 150 hours planning the event. LaDawn and Earnie called in favors from friends and family to get the job done. A website was created by a friend, free of charge. LaDawn says most services were donated or drastically discounted. On show day, more than 74 cars were available for viewing, along with door prizes, raffle drawings and food. Cars were free to view. Those who entered a car in the show paid $25 and received a goodie bag, T-shirt and dash plaque. At the end of the day, DreaMS of A Cure raised more than $11,000 in a town of 16,000 people. LaDawn’s friend, Manny Garbalena, who helped organize the car show, said such huge success for a first-year event was a bit of a surprise, though they knew all along how generous their community is. “I think other communities should try to coordinate these events because I think you’ll find a lot of communities are very supportive. If it worked here in a small community, I think it can work anywhere,” Garbalena said.
LaDawn is embracing the idea of “year-round fundraising.” She wants funds from the car show to support her Walk MS fundraising campaign and plans to formally present the National MS Society with a giant check at Walk MS: Amarillo Area 2012 in April. “I think having something else now to raise money in addition to what will be raised at the walk is something that can just help gain even more assets to fund research,” said LaDawn. She’s already gearing up for the 2nd Annual DreaMS of A Cure in 2012, with a goal of $25,000, proving one person – and a handful of helpful friends – in one supportive community can make a big difference. “Just take an idea and run with it and try it, you might be surprised with the results you get,” said LaDawn.
April Brownlee is a Development Manager in the Society’s Amarillo office. She can be reached at aprilbrownlee@nmss.org.
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Earl and Tyler Campbell are Unstoppable Forces with a Clear Goal F
ootball legend Earl Campbell has returned to the field with the goal of stopping MS. A former running back for the Houston Oilers and New Orleans Saints, Campbell plays front and center in “The Unstoppable Earl Campbell,” a personally autographed, limited-edition piece released through Warner Bros. that depicts him alongside famous Looney Tunes characters. Sales of the artwork will raise funds through the Pro Player Foundation in
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partnership with the National MS Society, in honor of Earl’s son, Tyler, diagnosed with multiple sclerosis in 2007. Like his father, Tyler was a running back, playing for San Diego State University in 2006 and 2007. Since his diagnosis four years ago, Tyler has become an active Society ambassador in his home state of Texas and is passionate about raising awareness of the disease.
“I view my MS diagnosis as a blessing,” Tyler said. “I now have the opportunity to share my experience to help others living with this disease and make an impact on the MS community.” Earl Campbell said, “As a father, I am proud to rally behind my son and join his fight to find a cure.” A Pro Football Hall of Fame member, Earl was one of the most powerful runners in National Football League history. Although the gridiron star rushed for more than 1,000 yards in five of his first six seasons, his finest season came in 1980, when the former Heisman Trophy winner ran for an incredible 1,934 yards, the second best rushing performance in pro football history at the time. Former Oklahoma Sooners and Dallas Cowboys coach Barry Switzer once called Earl Campbell “the greatest player that ever suited up.” The Houston Oilers’ star joins an elite club of pro athletes honored by Warner Bros., including Drew Brees of the New Orleans Saints, boxing legend Muhammad Ali, Chicago Bulls player Michael Jordan, hockey great Wayne Gretzky and Derek Jeter of the New York Yankees. The limited edition piece featuring Earl and key players from the Looney Tunes roster is available as a fine art lithograph or as a hand-painted cel. “The Unstoppable Earl Campbell” is accompanied by a Certificate of Authenticity. Visit theunstoppableEarlCampbell.org for more information and to purchase the piece.
A Personal Message from Earl Campbell Thank you so much for your participation in the Campbell Project to raise awareness for multiple sclerosis. This disease affects more than 2.1 million people worldwide and that number is steadily increasing. My family received a wake-up call in December of 2007 when my son, Tyler, was diagnosed with MS. Since that time Tyler has embraced his MS and views the disease as a gift, rather than a setback. As a father, I am proud to rally behind my son and join his fight to find a cure. I am honored to be featured in “The Unstoppable Earl Campbell” Warner Bros. piece and hope that it will make a great impact in raising funds for the National MS Society! The good Lord blessed me with the ability to play football at both the collegiate and pro levels. However, my career would have never reached the magnitude that it did without the dedication of my teammates, coaches and the never-ending support from you as fans. Now that my career on the field is over, I am calling out to my fans to support me again in the fight to cure MS. Thank you again for your loyalty. Hook ‘Em and Luv Ya Blue!
Earl Campbell
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Making the Art for “The Unstoppable Earl Campbell� W
arner Bros. art director Ruth Clampett works with the selected athlete and Broadman Fine Arts to create an art concept that tells a visual story. The creative team, combining decades of experience with the famous Warner Bros. characters and animation art, develops the character-driven gags and detailed background setting for the original art concept. The next stage is a rough drawing of the concept. Character and layout artist Darrell Van Citters sketches the characters with their expressions, dimensions, costumes, props and gags, further bringing the concept to life. Once the rough drawing stage is complete, a final drawing is made so that the inking artists can handtransfer the drawing to a cel, or acetate celluloid.
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The hand-inked cel is then sent to the color artist for character, costume and prop color selection and painting. Once the cel is complete, the hand-painted background can be made. Billboard artist Kirk Mueller designs and illustrates the drawings for the billboards that will be incorporated into the background painting. Background artist Dennis Durrell then hand paints the detailed background for the art. At the final stage, the cel is laid over the handpainted background, completing the original art used to create the limited edition. It all comes together to best feature the honored athlete, Earl Campbell, the tradition and pride of the University of Texas Longhorns, and the unique flavor of Texas.
Keep Your Expenses from Becoming a Taxing Situation M
any of the expenses associated with managing multiple sclerosis – beyond medicines – might be tax-deductible. Keeping in mind that only unreimbursed medical expenses that exceed 7.5 percent of your adjusted gross income are deductible, here are additional possibilities: • Equipment and extras – such as service dogs and their food, and transportation to doctor appointments via car service or taxi if you can no longer drive • Home modifications that do not increase a home’s value (Anne Davis, Program Director of Legal Services for the Society’s New York City and Southern New York Chapter, said, “Get a doctor’s prescription for ramps, wider doorways, grab bars,
even a swimming pool, as well as a letter from a real estate agent stating that these changes don’t make your home more valuable.”) For people receiving SSI or disability benefits, impairment-related work expenses may be deducted from their earnings, if their income might otherwise jeopardize their government benefits. Two IRS publications may be helpful and are available from your local IRS office: • 907, Tax Highlights for Persons with Disabilities • 502, Medical and Dental Expenses Consult an accountant to make sure your particular situation is in line with current IRS regulations.
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RE S EAR C H
Research Round-Up Pediatric Network Studies Environmental and Genetic Factors Investigators nationwide are recruiting 640 children with early relapsing-remitting multiple sclerosis and 1,280 children without MS for a four-year study to determine environmental and genetic risk factors that make children susceptible to developing MS. One of the local study sites is the MS Clinic for Pediatric Neurology at Texas Children’s Hospital. For further information on this pediatric study, contact Janace Hart with the University of California - San Francisco at 415-514-2476. Oral Drug Trial Reports Successful Results A phase III study of oral teriflunomide found that the drug significantly reduced the average number of MS relapses in a year more than inactive placebo in a study of 796 people with relapsing forms of MS. The therapy also reduced the volume of tissue damage and active areas of damage in those who were taking teriflunomide compared to placebo at the end of the two-year trial. Paul O’Connor, M.D., and colleagues at the University of Toronto published the complete results in The New England Journal of Medicine in October. The study was sponsored by Sanofi-Aventis. Researchers Recruit Relatives for Risk Assessment Researchers from the Harvard Medical School, Brigham and Women’s Hospital, and Partners Multiple Sclerosis Center are recruiting 5,000 subjects who have at least one first-degree relative with a diagnosis of MS. The goal of the study is to identify the genetic,
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environmental and immune profiles that may increase a person’s risk of developing MS. A first-degree relative could be a parent, sibling or child of a person with MS. The study is limited to those between 18 and 50 years of age. All 5,000 participants are being asked to donate a saliva sample for DNA analysis – sent via mail and at no cost to the participant – and to complete a questionnaire online about neurologic history, family history and potential environmental exposures. Based on answers to this questionnaire and the DNA analysis, the team will collect blood samples and MRI scans from a subset of respondents who choose to participate in that part of the study. The team will contact all participants every three years for up to 20 years to obtain an updated questionnaire. There is no cost to participate in the study, and participants can reside anywhere in the United States because no travel is required to enroll in the study. Some travel may be required for the optional MRI portion of the study and the participant will be reimbursed for travel cost. For information about this study, contact research coordinator Emily Owen at 617-264-5980 or bwhmsstudy@partners.org. Society Teams with Athersys on New Treatment Development Fast Forward, LLC, a nonprofit subsidiary of the National MS Society, and Athersys Inc. announced an alliance to fund the development of Athersys’ MultiStem adult stem cell platform for the treatment of MS. The platform includes treatment of chronic progressive forms of the disease with the goal of
accelerating the clinical application of MultiStem for patients diagnosed with MS. Fast Forward will commit up to $640,000 to fund the advancement of the program to clinical development stage. Positive Results Pave the Way for New Drugs Biogen Idec announced in late October that the experimental oral therapy BG-12 significantly reduced the average number of annual MS relapses in a twoyear, Phase III clinical trial of more than 1,400 people with relapsing-remitting MS. Although its exact mode of action is not known, BG-12 is thought to inhibit immune cells and molecules involved in MS attacks on the brain and spinal cord. Data analysis is ongoing and the company expects to provide a full report at an upcoming medical meeting. Positive results from another Phase III trial of BG-12 were also announced this year, paving the way for a potential application for marketing approval.
Research Takes Center Stage About.com blogger Dr. Julie Stachowiak and producer/ director Kate Milliken – both of whom live with MS – reported live on the Society’s blog from the world’s largest MS conference. At the fifth joint meeting of ECTRIMS and ACTRIMS (the European and Americas Committees for Treatment and Research in MS), more than 5,000 of the world’s leading scientists and clinicians gathered Oct. 19-22 in Amsterdam. Results from four Phase III studies on MS therapies were presented, along with the latest research on MS risk factors, treatments and diagnosis.
Join the ongoing conversation at blog. nationalMSsociety.org to connect with people with MS and MS experts. For more information on these and other MS research news items, visit the Society online at nationalMSsociety.org and click the Research tab.
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Preparing for Pregnancy Helps Avoid the Drama of Becoming a Mama T
he good news about planning a pregnancy when you have MS is that there’s no evidence that MS has any effect on fertility. Pregnancy usually reduces exacerbations, although flares do tend to increase postpartum, and good outcomes are the norm. Nevertheless, making the decision to get pregnant can be complicated, primarily because of the physical challenges of MS. Said Barbar Green, M.D., director of the West County MS Center in St. Louis, “I also suggest women think about and discuss with their partners the emotional and financial challenges of raising a child, which could affect work and managing the disease.” None of the disease-modifying drugs (DMDs) are approved for use during pregnancy and most should not be taken for a few months beforehand. Plan a discussion with your neurologist about when to stop DMDs and when, after delivery, to begin them again. “Until recently, most studies were neutral about whether breastfeeding was protective in preventing relapses,” said Dr. Green. “But a new study quotes a beneficial effect on relapse. People with nonaggressive disease may be able to wait to resume DMDs, which can’t be taken while nursing.” Include any symptom-management medications in the discussion with your doctor. From bladder problems to fatigue, pregnancy can make MS symptoms worse, yet many meds are not safe for pregnant women. “We advise people on nonpharmaceutical approaches: getting enough sleep, adjusting work schedules and exercising,” said Dr. Green.
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“Symptoms during pregnancy are probably not MS. Tiredness doesn’t mean your symptoms are coming back,” said Eileen Davis, APN, who has worked with people with MS for 12 years in New Jersey and New York. Keep exercising, she recommended, “so you aren’t carrying unnecessary weight postpregnancy, which can affect symptoms such as falling.” Connect your obstetrician and neurologist to coordinate your care. If anesthesia is part of your birth plan, arrange a meeting with the anesthesia team. All forms of anesthesia are considered safe for women with MS. Don’t wait to plan for what happens after delivery. Tap family members and friends about helping with housework, preparing food and, of course, watching the baby.
Check out the Society’s collection of videos, books, booklets and Web pages – available at nationalMSsociety.org/pregnancy – that you can download. You can also call the Society at 1-800-344-4867 (press 1) for free printed copies.
ConocoPhillips Training Ride Series Volunteer Goes the Extra Mile by Kelli Dreiling
E
very year, thousands of people make a personal challenge of riding their bicycles from Houston to Austin during the third weekend of April for the BP MS 150. Whether you are new to cycling or make it part of a regular lifestyle, training and support are vital to ride approximately 180 miles over two days. For more than 15 years, many people have counted on Steve Moskowitz and the ConocoPhillips Training Ride Series to get them safely to Austin. Steve is Director of Facilities for ConocoPhillips and has served as team captain for the ConocoPhillips Cycling team since 1996. Under his leadership, the team has consistently been a leader in fundraising and cycling safety. In 2011, his team of 502 riders raised $627,000, making it the second largest team in terms of riders and dollars raised. In June 2011, the Society’s Houston Development Team recognized Steve and the ConocoPhillips Training Ride Series with the Extra Mile Award. Among the various volunteer awards presented for the BP MS 150, the Extra Mile Award honors special volunteers who demonstrate superb initiative and dedication. The ConocoPhillips Training Ride series is responsible for helping countless people realize their dreams of riding in the BP MS 150. And Steve ensures they have fun in the process. Thinking back to 1994, Steve said he’ll never forget his first ride to Austin that year. “It was an amazing rush of emotion and accomplishment. It started out as a cycling adventure, but when I got to Austin, I realized my own impact on the mission of the Society and I felt overwhelmed by it. I had an amazing time, even with a fierce head wind all day on Sunday. I will never forget the sense of accomplishment and empowerment I felt when I arrived in Austin. This was compounded by seeing and meeting so many of the beneficiaries of the ride, out cheering and greeting us in Austin.”
A couple of years later, Steve agreed to be the assistant co-chairman for the training ride series. Shortly afterward, he found himself leading the effort as the captain was sent to Nigeria until the week before the MS 150. He recalled that first year as captain to be a sink-or-swim situation. Although Steve is very organized, he admitted that his laziness prompted him to take good notes that first year. He doesn’t like repeating things, so he’s been recycling those notes and making improvements each year. After 15 years, he’s perfected the art of recycling notes and now his distribution list has grown to more than 2,000 people. “It was a no-brainer to get more involved in building my team and the training series into vehicles to help individual riders complete this amazing ride. By offering the training ride series, it also helped new teams get established in their early years while they recruited riders and looked after their team logistics. I was sold on the mission to join the fight to cure MS after the first ride. I recognized that I could really leverage my organizational skills to build a great team and a great series which in turn helps build many more enthusiastic riders and great teams,” Steve said, which ultimately adds up to contributions of a lot of dollars and volunteer hours in support of the BP MS 150. What started out as a few loosely organized rides with maps, a schedule and a phone list in 1991 has turned into a life-changing adventure with many new friendships for more than 2,500 people. Today the series consists of 12 weekly organized rides from January to April, plus two bonus rides designed for beginning riders before the 12-week series starts. Ride Marshal and ConocoPhillips team member Margaret Shelton approached Steve about needing very basic training for people who have never been on a bike before. Together, Margaret and Steve even helped
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one person learn to ride a bike in the parking lot and enjoyed seeing that same man cross the finish line safely 14 weeks later in Austin. The purpose of the training series is multidimensional. First, Steve ensures that riders understand how to ride safely and courteously in group rides on public roads. “All 2,000 riders plus 400-500 email-only subscribers receive weekly safety tips, on-bike exercises that we work on at the weekly rides, such as how to pass or be passed, as well as weekly feedback on what we are doing well and what needs improvement. I insist that each of our riders understands and agrees that they are ambassadors for cycling, for their respective teams and for the BP MS 150,” Steve said. Approximately 2,000 riders participate and represent 20-25 different core teams in the BP MS 150. The cost is $100 per person, which helps cover the expense of food, drinks, community support, volunteers, law enforcement, portable toilets and more. The weather dictates the attendance in the weekly rides. On a really cold day, Steve said that about 500-600 riders show up, whereas twice as many riders will show up if the weather is nice. Training for the BP MS 150 should include different types of weather as well as long, hilly rides. The ConocoPhillips Training Ride series gradually builds up from shorter, flat rides to longer, hilly rides so each rider who completes the series is in great shape to enjoy the ride to Austin. “Actually, if you complete 50 percent of our rides, you will enjoy the BP MS 150, as long as it’s not the first 50 percent of the series and you skip the last six rides,” said Steve. Aside from getting prepared physically, another goal of the training ride series is to build good relationships with local communities. After the first two rides, Steve requires each weekly attendee -- except the weekly support team -- to carpool to the rides. Sometimes he pays a local organization to help secure and coordinate parking to minimize the impact of such a large group. In his weekly emails, he promotes local businesses such as bed and breakfasts, restaurants, and local attractions so that the riders will support the communities impacted by the rides and to ensure they’re invited back. Finally, Steve makes sure that each rider has a lot of fun before and during the ride to Austin and
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makes a lot of new friends in the process. Rider Joy McCormack has made a lot of great friends as a participant in the training ride series. “The BP MS 150 is a safer ride because of the ConocoPhillips Training Series, and especially because of the hard work and dedication of Steve Moskowitz. Because of Steve and his team, hundreds of new cyclists have been trained to ride properly and each year about 1,000 more are refocused on keeping safe on the road. From the routes, parking logistics, ultimate port-a-potty management and even the snacks, especially those Gummy Bears and peanut butter-filled pretzels, Steve has planning and executing a good ride down to a science. I look forward to the series each year because it means a chance to catch up with good friends and have a terrific ride. Steve takes care of it all and leaves just riding our bikes to us,” she said. In addition to organizing rides for the BP MS 150, Steve is co-chairman of Race Day Operations for the ConocoPhillips Rodeo Run, part of the Houston Livestock Show and Rodeo. He also helps organize a summer charity garage sale for the men’s club at his temple. As a cancer survivor, Steve enjoys participating in the annual LIVESTRONG Challenge in Austin simply as a rider, not an organizer. He is also active on the BP MS 150 Safety Committee and enjoys spending time with his wonderful teacher wife and their three grown kids and granddog. “The network of cycling friends I have made since 1994 is truly a major treasure. Each ride is an adventure that brings people together. I am very proud of the reputation our series and our riders have in the community,” Steve said. “I have discovered that while we are a very diverse group, many cyclists tend to have a very high level of interest in getting involved in getting things done and improving the community. ” Beginning this year, the ConocoPhillips Training Ride Series will be named “Ready 2 Roll Cycling.” As in the past, the series will include a 12-week comprehensive training program from January thru April, culminating with the BP MS 150. This effort will be under the volunteer leadership of Steve and Robbie Moskowitz, and Marshall and Jan Cohen.
Kelli Dreiling is Vice President, Development in the Society’s Houston office. She can be reached at kelli.dreiling@nmss.org.
National Multiple Sclerosis Society Lone Star Chapter 8111 North Stadium Drive, Suite 100 Houston, Texas 77054