MOVING TOWARD A WORLD FREE OF MS SPRING 2014
In this issue: Major research advancements made in 2013 Chance meeting leads to new connections Affordable health insurance making a difference
ONE STORY AT A TIME
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
The official magazine of the National Multiple Sclerosis Society: South Central Arkansas • Louisiana • New Mexico • Oklahoma • Texas
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.
Board of Trustees Chairman ERNEST JOHNSON HOUSTON, TEXAS
Treasurer DON McCORMACK MIDLAND, TEXAS
Secretary DAVID CARDER TULSA, OKLAHOMA
Regional Executive Vice President MARK NEAGLI
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.
MS STOPS PEOPLE FROM MOVING
WE EXIST TO MAKE SURE IT DOESN’T. JOIN THE MOVEMENT®
Information provided by the Society is based upon professional advice, published experience and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. The National Multiple Sclerosis Society recommends that all questions and information be discussed with a personal physician. We mobilize people and resources to drive research for a cure and to address the challenges of everyone affected by MS.
Spring 2014 VOLUME 8 • ISSUE 2
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 2013 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 ARKANSAS
Little Rock 1100 N. University, Ste. 255 Little Rock, AR 72207 Phone: 501-663-8104 LOUISIANA
Metairie/New Orleans 4613 Fairfield St. Metairie, LA 70006 Phone: 504-322-3790 NEW MEXICO
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
Tulsa 4606 East 67th St., Ste. 103 Tulsa, OK 74136 Phone: 918-488-0882
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
Amarillo 3350 Olsen Blvd., Ste. 1700 Amarillo, TX 79109 Phone: 806-468-8005 Austin 9600 N. Mopac, Ste. 150 Austin, TX 78759 Phone: 512-340-2700 Houston 8111 N. Stadium Drive, Ste. 100 Houston, TX 77054 Phone: 713-394-2900
North Texas 2105 Luna Road, Ste. 390 Carrollton, TX 75006 Phone: 469-619-4700 San Antonio 9830 Colonnade Blvd., Ste. 130 San Antonio, TX 78230 Phone: 210-694-3200
South Central Offices MOVING TOWARD A WORLD FREE OF MS
MS Calendar The connections we make are stronger than the connections MS can destroy. Get connected with the MS Community through events, peer support, wellness, volunteer opportunities, and advocacy. For questions about any of the items on our calendar, or to learn about self-help groups and wellness classes, call 800-344-4867 or visit nationalMSsociety.org.
1 Walk MS: San Antonio 1 Strike Out MS Family Day,
Broken Arrow, OK 3-9 MS Awareness Week 8 Walk MS: Corpus Christi 14 Houston On the Move Luncheon 14-16 Champ Camp Recreational Program in Burton, Texas 20 Volunteer Orientation, 22 Walk MS: New Orleans and El Paso 25 Midland Dinner of Champions 26 Oklahoma Public Policy Conference 29 Walk MS: Amarillo, Permian Basin, Fort Worth and Baton Rouge
5 Walk MS: San Angelo,
Albuquerque, and Tulsa 12 Walk MS: Dallas, Shreveport, Las Cruces, Central Arkansas and NW Oklahoma 12-13 BP MS 150 Bike Ride 16 Louisiana Public Policy Conference 19 Walk MS: NW Arkansas 26 Walk MS: NE Arkansas, Roswell and Lawton
1 Walk MS: San Antonio 3 Walk MS: Lubbock,
Santa Fe, Oklahoma City 3-4 Bike MS: Sam’s Club Round-Up Ride 9-11 Camp Can Do Recreational Program in Burton, TX 15 Volunteer Orientation, 28 World MS Day
Every connection counts.
Join thousands of people supporting one another and exploring the issues that shape your world on MSConnection.org.
Wedding Bells in New Mexico National MS Society offices host all sorts of events, from yoga classes to committee meetings. On January 18, the New Mexico office was honored to host a unique event – the wedding of Joleen Trujillo and Frank Hedgeman. The couple’s close friend, Anita Chavez, performed the humorous, touching ceremony. “This office feels like home to me,” said the bride who was diagnosed with MS in 1991. Joleen is a Bike MS top fundraiser and both she and Frank volunteer with the Society regularly. Family and friends helped decorate, brought food and drink, and attended the small ceremony. Nearly 40 guests joined the couple in their celebration.
MSConnection • SPRING 2014
Valero Claims Title Sponsorship For Second BikeMS Ride V
alero Energy Corporation has once again solidified its commitment to helping achieve a world free of MS by extending its partnership with Bike MS: Valero Ride to the River and by claiming title sponsorship for a second ride – Bike MS: Valero Ride the Rim. “The National Multiple Sclerosis Society is sincerely appreciative of Valero Energy Corporation’s most generous contributions. Valero has been involved with the National MS Society as a sponsor and corporate bike team since 2000,” says Cynthia Rodriguez, Development Director for Bike MS: Valero Ride to the River. The sponsorship extension for Bike MS: Valero Ride to the River adds three years to Valero’s title-sponsor agreement. The extension is valued at a total of $300,000 for years 2015-2017. Valero also signed on as title sponsor of Bike MS: Valero Ride the Rim in Amarillo for 2014. Team Velo Valero has ridden in the Amarillo area Bike MS events for several years, and this new sponsorship is in response of that effort and because of the event’s close proximity to Valero’s McKee Refinery in the Panhandle town of Dumas. Bike MS: Valero Ride the Rim debuted as a new route in 2013 showcasing Palo Duro Canyon by giving cyclists an opportunity to make the challenging trek around the canyon’s rim. “Palo Duro Canyon is second only to the Grand Canyon in terms of size and each year brings in thousands of travelers and outdoor enthusiasts from around the world. We’re excited to make it the focal point of our ride in the Texas Panhandle and having a premier corporate partner like Valero helping us lead
the charge just makes it all the more exciting,” says April Brownlee, Senior Development Manager for the Amarillo event. Valero’s fundraising accolades are numerous. Since 2005, Velo Valero has been the San Antonio ride’s largest team and the top fundraising team with lifetime team fundraising exceeding $2 million. Bill Klesse, CEO and Chairman of Valero has been the top individual fundraiser since 2006 with cumulative fundraising efforts exceeding $500,000. In 2013, the Velo Valero team also fundraised their way to the top team ranking for the Amarillo event. But Valero’s support doesn’t just end with fundraising. Valero also provides hundreds of thousands of in-kind dollars to support the Bike MS and Walk MS events, provides highlyskilled professionals to help the Society grow as an organization, and provides volunteers for programs and services throughout the year to help support the 22,000 individuals diagnosed with MS who we serve in Texas. Says Rodriguez, “Valero’s contributions help our community by allowing families to participate in and benefit from camps in our region; by providing community resources to ensure that thousands of individuals who contact the Society locally are able to get beneficial information and support through the Financial Assistance Program, and by contributing funds to support promising new research initiatives.”
MOVING TOWARD A WORLD FREE OF MS
An online group for young people with MS helps a young man in New York find other people in his community.
His neurologist starts recommending online support as a resource for her MS patients.
Every connection counts. Visit MSConnection.org. MS Awareness Week | March 3-9, 2014 • World MS Day | May 28, 2014
We are all activists.
An MS Activist • Stays informed and learns about critical policies affecting people living with MS. • Shares their personal story. • Boldy asks public officials for support. • Joins with other MS activists in the community.
Join the MS Activist Network. nationalMSSociety.org/msactivist
MSConnection • SPRING 2014
A DVO C A C Y
Affordable Care Act Making a Difference for Families with MS A
s anyone living with MS or another chronic illness knows, having good health insurance is important. Thanks to the Affordable Care Act, getting affordable health insurance is easier than ever. My name is Beth Vandiver, and because of the Affordable Care Act, I have access to the health care I need. I was diagnosed with MS in 2010. I was teaching second grade and on my way to work one day in August, I thought I was having a stroke. My left side went numb and I had trouble staying in my lane in my car. I made it to the classroom, but my students and co-workers knew something was wrong. I went to a neurologist and had an MRI, and received my MS diagnosis. Since my diagnosis, I have experienced many relapses. My vision is affected, and I have painful back spasms. Stress really exacerbates my MS symptoms, so I eventually had to quit teaching school. Getting health insurance on Beth Vandiver the private market was impossible because MS was considered a pre-existing condition. Once my COBRA ran out, I tried to get an individual plan but was refused. Without health insurance, I often went without treatment because I couldn’t afford doctor’s visits or medicine. My immune system is suppressed because of my MS, so I get sick often, but getting health care was just too expensive so I
just tried to pull through as best I could. The Affordable Care Act changed all that for me. Insurance companies are no longer allowed to refuse to cover someone because of a pre-existing condition, so I was able to get health insurance from the same company that initially refused to cover me because of my MS – and my premiums are half of what they were on COBRA! I applied online for health insurance at www. healthcare.gov and found out that I qualify for premium and co-pay assistance. The National MS Society was a great resource as I learned about my options; I wouldn’t have known about co-pay assistance without their help. I am now excelling in school to be a paralegal. I also work four days a week substitute teaching. I am not going to let MS overtake me, and now that I have access to health care, I can afford the drugs that help keep me active and healthy. Health care laws like the Affordable Care Act impact everyone living with MS, and legislators need to understand that state and federal legislation relating to health care impact real people like me. I am going to get involved in MS Activism and share my story with my elected officials, so they understand why access to affordable health insurance is so important.
MOVING TOWARD A WORLD FREE OF MS
VO L U N T E E R
Leaders in the Movement The Leaders in the Movement: South Central program recognizes volunteers who model the culture we envision for the entire Society; a culture in which volunteers lead, inspire and educate other volunteers. National MS Society volunteers make significant contributions that impact the work we do every day. They are empowered to use their skills and influence to make a difference in the lives of people living with MS and to unleash their creativity to inspire others to join the movement.
MSConnection â€˘ SPRING 2014
Meet our volunteers that are leading the way to a world free of MS! Leaders in the Movement
Meet Barbara Leonard
ccess to MS Care is a priority issue for the National MS Society, and a passion of volunteer Barbara Leonard. In 2010, the Community Health Relations (CHR) program was designed to strengthen our relationship with healthcare providers throughout the region, using volunteer ambassadors to reach out to providers in the community. Barbara was among the first group of volunteers to be trained as representatives of the National MS Society and she dove right in, committing to four visits a year with a neurologist in her area. She found she couldn’t stop there and quickly began reaching out to additional healthcare providers in New Mexico. As time went by, staff partner Gail Lindsey realized Barbara possessed both the skill and enthusiasm to assist with managing the program; when asked to do so, Barbara immediately agreed. As the CHR Volunteer Coordinator, Barbara now serves as mentor to other CHR volunteers. She facilitates
telephone trainings for volunteers joining the CHR team, and she keeps all the volunteers informed and motivated through a quarterly newsletter, Making Connections. She worked with the Programs staff to develop an online toolkit for healthcare professionals that includes links to our Clinical Care Network website. She developed “County Plans,” a strategic approach for reaching out online to healthcare professionals in rural and underserved areas across our region. And she has co-lead Society committees that work to expand the access to quality MS healthcare. Barbara’s reach expands far beyond the New Mexico borders, educating, mentoring and leading volunteers from across the region. While her dedication is making a difference now, it will also help us realize our long-term vision of implementing MS Care Link, a program that will not only connect healthcare professionals to the Society, but to one another.
MOVING TOWARD A WORLD FREE OF MS
Leaders in the Movement
Meet Rudy Gurtovnik
udy Gurtovnik began volunteering with the National Multiple Sclerosis Society in 2013 as a Wellness volunteer in the Programs & Services Department. Rudy has no personal connection to MS, but wanted to expand his knowledge of the healthcare and human services field; specifically program development and project management. Quiet, soft spoken and diligent, Rudy takes his volunteer work to heart and during the past year, he has made a huge impact in analyzing and recommending Wellness initiatives. Rudy developed both a survey and scoring method to help us measure the impact of our wellness programs on individual participants. He researched, assessed, and wrote partnership proposals for potential YMCA partners to offer classes for our constituents. He has created and edited training materials used to educate new volunteers, assisted with budget forecasting and project planning, and represented the Society at the UT Health Science Center Concussion Conference. Not only did he speak to a number of people about our services but he researched possible relationships between concussions and multiple sclerosis, and brought this information back to staff in the form of a report recommending that we educate our clients regarding the risks of concussions for people with MS. Rudyâ€™s endeavors have enabled us to improve the efficacy of our services by providing staff with critical data, analytical tools and ways in which to better plan and execute our work. His skills, ingenuity and commitment are outstanding and truly represent what it means to be a Leader in the Movement.
MSConnection â€˘ SPRING 2014
Leaders in the Movement
Meet Dr. Robert Sheridan
r. Robert Sheridan Conrad passed away on October 17, 2013 in Katy, Texas at the age of 52. Not only was Dr. Conrad an accomplished scholar, lecturer, and practitioner, he was a loving husband and father to three daughters. His many interests made him a well-rounded man, spending his free time as a supporter of the Katy area FFA program, raising horses and cattle, and devoting time each year to the National MS Society as a unique, memorable Leader in the Movement. For more than 10 years, Dr. Conrad supported the BP MS150 Bike Ride by playing his bagpipes to encourage riders on the Bechtel Challenge route. What started as a way to support a friend, turned into an annual tradition and family affair. Every April, he and his daughter Stephanie would make the drive out to LaGrange, and pick out a good spot on the route for day two. Cyclists who have ridden the Bechtel Challenge Route over the past 10 years cannot forget the famous Bag Piper. Many cyclists would stop along the route to snap a picture with him, shake his hand, and enjoy the music. We know that the more than 6,000 cyclists who take the Bechtel Challenge Route again this year will remember Dr. Conrad and the inspiration he shared through his talent and dedication. Itâ€™s not every day you meet a Bag Pipe player, and it certainly isnâ€™t a volunteer position we as an organization would have thought to recruit for specifically. We are very fortunate that Dr. Sheridan chose to share his talent MOVING TOWARD A WORLD FREE OF MS
Spreading Awareness and Making Connections MS Awareness Week takes place March 3-9, but as anyone impacted by MS knows, awareness is something we strive for every day. One of the most powerful ways you can spread awareness is by telling your story. It can be as simple as chatting with someone next to you on a plane, or as challenging as blogging about a run across the US. By sharing our stories of how MS impacts our lives, we make connections that keep us moving toward a world free of MS. Get connected this year. Read stories. Share experiences. Be inspired.
MSConnection â€˘ SPRING 2014
MSRun the US
fter being told the unexpected words, “You have MS,” at the young age of 22, Jessica Anderson never imagined she would be training for the marathon of her life nearly six years later. Although experiencing shock and denial immediately following her diagnosis, Jessica has remained in high spirits and pushes herself to new limits every day. Today, she is looking forward to a new goal: training to run a marathon every day for five consecutive days in the relay race MS Run the US, a fundraising event to raise funds for multiple sclerosis. MS Run the US, Inc. was founded in 2009 by Wisconsin native Ashley Kumlien, who ran over 3,100 miles from San Francisco to New York in 2010 to raise money for her mother with MS. In 2013, the non-profit, which gives 80 percent of all donations to the National MS Society, launched their first relay run across America for MS with 15 runners from 10 different states raising over $234,000 for multiple sclerosis. Now in 2014, Jessica Anderson will be one of 16 participants, with her relay taking place May 5-9 across the state of Utah. After meeting MS Run the US founder in 2013, Jessica felt inspired by Ashley’s determination and immediately applied for the race online. Months later, Jessica got the exciting, nerve-racking and life changing news: she was accepted. “In my heart, I believe that if I accomplish this race I will not only prove to myself that I was diagnosed for a reason but I will have been diagnosed for the purpose of inspiring others,” said Jessica. ”It is no longer a question of ‘Can I do this?’ it is a fact. ‘I have to do this.’” Jessica has not always felt confident, however, to encourage others through her diagnosis and to accomplish a goal of this magnitude. “It was a very strong internal battle deciding whether or not I even wanted to come out with the fact that I actually had the disease for which I was running and raising funds,” admits Jessica.
But once the realization of her diagnosis sunk in, Jessica realized that she only had one choice: to keep moving forward. As part of her journey to become a relay runner in MS Run the US, Jessica has pledged to raise a minimum of $10,000 to support the MS cause and has been working hard to reach this goal. So far, she has seen donations and support come from friends and family all the way to complete strangers, which remains a huge motivator for her to complete this race. “Fighting MS is primarily why I applied to be a relay runner and the donations and support is what allows that to happen.” When Jessica feels the support from others, she is even more dedicated and motivated mentally to conquer the physical demands of training for the run. “Raising awareness of MS in this area is one of my goals, so I’m hoping with my participation in the relay it will raise awareness and support from the Lone Star state.” Besides training five to six days a week for the nearly 130 miles ahead of her, Jessica planned her own wedding and married the love of her life in February. Her newlywed husband is her biggest fan and supporter, encouraging her to accomplish her goals and achieve anything she puts her mind to, including the upcoming race. Her husband joins her on almost all of her daily runs and will wake up early to pack water and snacks for them and ride alongside her for hours without MOVING TOWARD A WORLD FREE OF MS
complaint. Jessica admits how blessed she is saying, “I’ve learned I have a man that loves me and everything I stand for, and he is just as much a part of this fight against MS as I am.” With a powerful internal strength and dedication, Jessica pushes to achieve her goals physically, educationally and personally. She admits that not everyone understands why she keeps pushing herself to such great lengths when she could easily give up and accept a disease that constantly tries to destroy her movement. “I have had people ask me why I’m doing this, but the drive inside me to make a difference and imagine a world without MS is worth every bit of effort, sweat and tears to me.” Unsure of what her future holds living with MS,
Jessica chooses to follow her determination and remains sure of one thing: No matter what she faces along her path, she will meet it head on and continue moving forward for as long as she can. “I’m going to move as much as I can now while I am capable because I know one day MS may decide to take me over, but it hasn’t yet.”
To support Jessica in her race across the US, visit www.MSruntheus.com or find her directly at www. firstgiving.com/fundraiser/jessica-anderson-13/ msruntheus2014relay. To access her blog and follow her personal journey visit www.jessmsruntheus. wordpress.com.
We All Have A Story, But Are We Willing To Share It?
onnecting with others is something that many struggle with on a daily basis. But, what if sharing your story and making one single connection could drastically impact and inspire someone else? Lisa Sailor believes in starting each day with the mission of, “looking with a fresh eye at those around us.” She says, “The checker at the grocery store may not be dealing with MS but surely has something in his/her life that is a challenge. An extra smile, word of encouragement or even a compliment could change the course of someone’s day.” Lisa, who has been living with MS for many years and began using a wheelchair 20 years ago, has
MSConnection • SPRING 2014
served as an inspiration to many as she has chosen to share her story openly. She reflects on why she decided to share her story, “If people see me living a happy, secure, confident life in a wheelchair with MS then
it may give them the courage to face what they are going through. We don’t all need to speak in front of hundreds of people to make a difference. We can make a difference within our own families and friends by choosing how we live on a day to day basis. “ While Lisa aims to make a difference in the lives of individuals on a smaller scale, her positivity has caught some large scale attention at the National MS Society and last fall she was asked to speak at the National Multiple Sclerosis Leadership Conference. As Lisa boarded the plane for the conference, she had no idea she’d be sharing her story sooner than she had anticipated. Since Lisa uses a wheelchair, the flight attendant usually seats her in the designated wheelchair accessible spot on the plane. This time, however, the flight attendant decided to seat her comfortably in an aisle seat at the front of the plane. Moments later, a woman approached the seat where Lisa was sitting and called for the flight attendant to let her know that a woman was sitting in her seat. The flight attendant asked the woman to take the window seat within the same row. At this time, Lisa explained to the woman that she has MS and requires a seat that she can access from her wheelchair. Despite Lisa’s explanation, the woman continued to insist that she be given her assigned aisle seat. After other passengers voiced their concern and apologies to Lisa, the woman decided to take the window seat. Having heard Lisa say earlier that she has MS, the passenger in the seat between the ladies, Trent, asked her if she had any interaction with the BP MS 150. Surprised and excited to talk about the event, Lisa said, “My husband and I have been top fundraisers for the BP MS 150 for the past several years. We approach it as a team. All year long we both look for opportunities to share our message about MS and that leads to our experiences with the bike ride. Just as in developing relationships my motto for raising funds is the same: no opportunity wasted.” She told him the purpose for her trip was to attend the National MS Society Leadership Conference where she would share her story about living with MS and her experience as fundraiser for the mission. Trent is a Managing Director at Greystar Real Estate Partners, a company that offers expertise in property management, development and investment. He had been a part of the company’s BP MS 150 team for the
past three years, consistently raising thousands higher than the anticipated goal set by the Greystar team. Before even meeting Lisa, Trent had set a goal for the team to increase participation from the current 10-12 riders to at least 20 in 2014. With the opportunity clearly upon him, Trent asked Lisa to be the guest speaker at his next Lunch & Learn event so that the rest of his team could hear her story first hand. When asked what inspired him to begin a conversation with Lisa, Trent said, “Lisa made me feel comfortable in a very awkward and uncomfortable situation, and because of that I wanted to know more about who this woman is. It has been an honor getting to know her and I believe that it was nothing short of divine intervention that placed us on that plane together. Lisa’s approach to life is truly inspiring and I couldn’t help but share it with my team.” Lisa and Trent re-connected when they returned to Houston, meeting for lunch to discuss her visit with the Greystar team at the Lunch & Learn. He invited Meredith, a Marketing Director at Greystar, along as well. While he and Meredith were on their way to lunch, Meredith shared with him for the first time that her husband has lived with MS for many years. After her lunch meeting with Lisa, Meredith felt inspired and filled with a new sense of hope. Lisa’s connection with Trent on the plane led to another impactful connection with Meredith and her husband as well as the entire Greystar BP MS 150 team. One simple connection can truly change the lives of those around us when we are willing to share our stories. Lisa is living proof of the power a connection can have. She shares some words of wisdom saying, “It took me a few years to realize that I was the one who would decide how others acted towards me and reacted to me. Even though being in a wheelchair may be the first thing people see about me it won’t be the last thing they remember. I often approach the subject first to put them at ease and to address the elephant in the room. It usually opens up dialog about them knowing someone else with MS. Sometimes it’s someone very close to them.” The connections we create can bring us all together to one day end MS forever.
MOVING TOWARD A WORLD FREE OF MS
Rounding Up Awareness Opportunities
ight years ago, Jim Riley was playing softball when he realized something wasn’t right. He began feeling weak, and his coach pointed out that he wasn’t following through completely on swings. Following the game, he felt so stiff and overheated that he just curled up in a ball. After a year of fatigue, weakness and muscle stiffness, Jim finally received his diagnosis: he had MS. Jim describes the time that followed as “hitting rock bottom,” as his MS progressed. He had to leave his job and sell his house, but through the help of his support group, friends and medical care, Jim was able to manage his symptoms and improve. That’s when Jim decided he needed to do something to stay active. He decided to borrow on an idea from his youth, when he showed cattle as a hobby. He knew that other nonprofits in his community did cattle shows as a way to raise awareness. Jim recalls, “I said, ‘One day, I’m going to do one.’ And a friend of mine said, ‘Why one day? Why not now?’” In just five months, Jim and his friends organized the first Riley Roundup for MS, a DIY Event with the
National MS Society. It took place in December of 2012 at Loy Lake Park in Denison, TX and raised $8,500 for MS research. Since then, Jim has decided to hold the event every year, and hopes to one day grow it to be a two-day event. He plans to introduce new aspects like live music, food and a bigger silent auction, all to bring awareness to the MS movement. Despite the hard work, and the fatigue he still deals with, Jim said, “Will I do it again next year? Yes, of course. And I’ll work just as hard at it because it’s something close to me.”
Do you have a unique idea that can improve the lives of people living with MS? MSEntrepreneurs is a grant program that can provide you with funding to bring this vision to life. Visit MSentrepreneurs.org to learn more and complete your application by April 15, 2014.
MSConnection • SPRING 2014
Walk MS connects people living with MS and those who care about them. It is an experience unlike any other – a day to come together, to celebrate the progress we’ve made, and to show the power of our connections.
GRAB YOUR FRIENDS & FAMILY AND PARTICIPATE IN AN EVENT NEAR YOU! San Antonio, TX Corpus Christi, TX New Orleans, LA El Paso, TX Amarillo, TX Permian Basin Fort Worth, TX Baton Rouge, LA
March 1 March 8 March 22 March 22 March 29 March 29 March 29 March 29
San Angelo, TX Albuquerque, NM Tulsa, OK Dallas, TX Shreveport, LA Las Cruces, NM Central Arkansas NW Oklahoma
April 5 April 5 April 5 April 12 April 12 April 12 April 12 April 12
NW Arkansas NE Arkansas Roswell, NM Lawton, OK Lubbock, TX Santa Fe, NM Oklahoma City, OK
April 19 April 26 April 26 April 26 May 3 May 3 May 3
Dates may be subject to change. Visit walkMS.org for current details.
Be Inspired. | Get Connected. | Raise Funds. | walkMS.org
Connecting with a Researcher:
Dr. Alexa Stuifbergen W
hen Dr. Alexa Stuifbergen was a Ph.D. student studying the impact of chronic illness on families, the connections she made led to more than two decades of work with the MS community. Many of the people in that study had MS. The initial connection of getting to know their needs, along with a personal connection she had through a friend whose dad had been diagnosed, led to volunteer involvement with the National MS Society, and research studies to better understand health promoting behaviors on multiple sclerosis. Dr. Stuifbergen explains, “Those early connections made me ask, how do you live well within the context of an MS diagnosis? It challenged me to study this. All of my work has been focused on what people can do to help themselves to live the best life possible when they are diagnosed with a condition such as MS.” Of course, Dr. Stuifbergen has seen major changes in how MS is diagnosed, studied and treated in the past 25 years, and she has been on the forefront of some of those changes. In 1996, she began a longitudinal study with almost 900 individuals living with MS, mainly in Texas. Today, she still has more than 400 of those individuals in the study, helping to uncover factors related to the progression of MS. One outcome, for example, helped to shed light on the role of exercise for individuals living with MS. Two decades ago, those diagnosed were told to rest, but Dr. Stuifbergen’s study, along with many more across the country, showed how important exercise can be
MSConnection • SPRING 2014
in delaying the onset of symptoms and improving the physical, mental and social health of those living with MS. Another part of the longitudinal study led to Dr. Stuifbergen’s current work. Participants were asked about their perceptions of memory problems and cognitive issues. They found that a majority described concerns over memory but used very few strategies for memory improvement. Other studies have documented that aspects of cognition (attention, information processing speed, new learning and memory, and executive functioning) may be affected in 50-75% of those with MS and cognitive symptoms are among the most disabling effects of the disease. Seeing how big the problem was, and knowing that there were very few validated treatment options available, led her team to develop an intervention. It was based on the best cognitive rehabilitation options for other conditions, but tailored to the needs of MS. The intervention “Memory, Attention and Problem Solving Skills for Persons with MS “ (MAPPS-MS) includes three parts: 1.
Learning compensatory strategies, such as environmental modifications or behavioral strategies, to help individuals adapt in everyday life;
2. Focus on aspects of lifestyle that impact cognitive function, such as, exercise, sleep and anxiety reduction; and 3. Focus on brain retraining using computer activities to practice skills at home to improve memory, attention and problem solving. The initial pilot study from 2009-2011 included 61 individuals in the Houston and Austin area, and it demonstrated a statistically significant, large improvement in use of compensatory strategies as well as significant increases in performance on tests of verbal memory and processing speed. “The results of this study have been very positive. Improving cognitive performance has the potential to help persons with MS stay employed and functioning longer. We don’t want to wait for people to become
severely impaired. Through compensatory strategies, we are able to return some function and help individuals live the best that they can,” says Dr. Stuifbergen. The feedback has led to the launch of a new NIH-funded, multi-site trial of the intervention. Dr. Stuifbergen, along with Dr. Heather Becker and Dr. Frank Perez, are currently recruiting 180 individuals over the next three years in Houston, San Antonio and Dallas/Fort Worth for the MAPSS-MS research study. To participate, individuals must be experiencing cognitive problems and have internet access to do the computer practice. The intervention is largely the same as the 2009 study, except this time they are improving the testing to see if improvement on the neurpsychological tests translates to everyday life. Additionally, they will do a 6-month follow up to see if the effects are sustained. Dr. Stuifbergen is thankful for those who have volunteered for research studies, saying that individuals with MS have been amazing contributors to research endeavors. “Not only are they able to take advantage of new treatments and interventions, but they are making things better for the future. They are advancing the understanding of MS to help everyone across the spectrum,” she says. “I’ve learned so much from the people who have participated in our studies. Their input provides a lot of direction for future studies. We’ve always tried to make our work relevant to what people are experiencing, to reflect the reality of what’s really important to those living with MS.” If you live in the Houston, San Antonio or Dallas area and are interested in participating in the MAPSSMS study, please call Vicki Kullberg at 800-687-8010 to see if you qualify. There is a $225 compensation for completing the study.
Dr. Alexa Stuifbergen is Dean at the University of Texas at Austin, School of Nursing, the James R. Dougherty, Jr. Centennial Professor of Nursing, and the Laura Lee Blanton Chair in Nursing. She has, served on many national committees, including for the National MS Society and National Institutes of Health. She has received more than $11.8 million in grants to study health promotion in adults with chronic disabling conditions such as MS.
MOVING TOWARD A WORLD FREE OF MS
Major Advancements Made in 2013 Toward Understanding and Treating MS The National MS Society continues to pursue all promising paths to uncover solutions for everyone with MS, wherever those opportunities exist, while focusing on the three priority areas of progressive MS, nervous system repair, and wellness/lifestyle. We continue to see the fruits of previous investments, and we are committed to growing our research funding over time. 20
MSConnection â€˘ SPRING 2014
ignificant research progress occurred over the course of 2013, offering new leads that are driving efforts to stop MS in its tracks, restore function, and end MS forever. We now have a better idea of what’s causing MS damage and progression, understand more than
ever the benefits of early and continuous treatment, and know more about what factors influence the body’s brain repair mechanisms. Here is a brief summary of significant research progress made in the past year:
Stopping MS • The oral therapy Tecfidera was approved for relapsing MS by FDA, and positive results of peginterferon beta-1a in relapsing MS led to an application to FDA for its marketing approval. • The Society joined with NIH to launch a therapy trial of the re-purposed therapy ibudilast in primary-progressive and secondary-progressive MS. • The global Progressive MS Alliance held its first scientific meeting to identify challenges and opportunities, and released its first request for research applications to address gaps in knowledge and research tools. • A study suggested that smoking increases a person’s immunity to interferon, which could reduce the treatment’s benefits. • Dietary salt may stimulate immune activity in MS, according to studies supported by the National MS Society and others. The Society is investing in additional research to follow up this lead. • Researchers found a possible “biomarker” or indicator that may help predict MS disease progression. It is called Tob1, a molecule associated with immune cells, and if confirmed, it may ultimately be used to identify people who are likely to progress to full-blown MS after an initial attack. • There is increasing understanding that
malfunctioning mitochondria, the tiny energy producers of cells (like battery packs), may contribute to nervous system damage in MS, opening up possibilities for preventing that damage. • A report was published from the International Pediatric MS Study Group’s Therapeutic Summit Workshop, outlining optimal trial designs for studying disease-modifying therapies in children with MS to improve care. • A large meeting of the National MS Societylaunched MS Outcome Assessments Consortium and the U.S. Food and Drug Administration cleared a pathway for a new tool for improving and speeding clinical trials in MS. • Among new efforts and collaborations to drive efforts to stop MS in 2013, the Society partnered with the Alzheimer’s Drug Discovery Foundation and the Beyond Batten’s Disease Foundation to form a collaborative research network of 10 leading universities aimed at screening drugs that show potential for treating brain diseases; provided co-funding to the UK MS Society for an innovative clinical trial testing nerve-protecting therapies in secondary-progressive MS; together with ECTRIMS, sponsored an international workgroup revising clinical classifications of MS to enhance clinical trials and work especially in progressive MS; and renewed funding for an international feasibility study (“SUMMIT”) aiming at identifying risk factors that drive MS progression.
MOVING TOWARD A WORLD FREE OF MS
Restoring What’s Been Lost This year witnessed growing evidence that exercise and rehabilitation can restore physical and mental functions and help people with MS live fuller lives. Progress is also accelerating in the field of nervous system repair, thanks in part to significant previous investments made by the National MS Society in an international targeted initiative. Repairing the myelin insulation on the wire-like axons is thought to be important not only for restoring nerve signaling and function, but also for shielding axons from further harm. • The first Phase 2 trial was launched of “antiLINGO” investigational therapy aimed at stimulating myelin repair in people with MS. • Two mouse studies in the U.S. and Italy showed potential of stem cells derived from the skin for growing new myelin and for reducing nervous system damage. • The first Barancik Prize winner innovated technology to search on–the-shelf drugs for myelin repair potential; a clinical trial is now starting based on a drug uncovered by this system. • Studies from three labs provided basic clues to nervous system damage and factors controlling repair of the brain’s insulating myelin, which if confirmed could eventually be translated to promising new therapeutic approaches to stimulating myelin repair to restore function in people with MS. • Society-supported researchers used noninvasive imaging called PET (positron emission tomography) to visualize the loss and repair of myelin in rats over time, which can be used to identify compounds with future potential to treat MS. • Another step toward improving MS symptoms was taken when Canbex Therapeutics, the recipient of early funding from the Society through
MSConnection • SPRING 2014
Fast Forward, leveraged new funding to launch a clinical trial of an oral investigational therapy to treat debilitating muscle spasms (spasticity) experienced by many with MS. • A small study suggested that aerobic exercise has potential for broad benefits for people with MS including improving memory and building brain circuitry. • A clinical trial showed strong evidence that a specific type of memory training improves learning in people with MS and benefits other aspects of quality of life. • To drive additional progress toward restoring what’s been lost in MS, in 2013 the Society also: initiated funding for a clinical trial to determine whether aerobic exercise can improve cognitive impairment in people with MS; partnered with the University of Miami and Accera, Inc. to test novel “Medical Food” for MS cognitive impairment; and invested in commercial therapy development programs through Fast Forward, focusing on novel therapies to protect the nervous system from MS damage and/or stimulate myelin repair. These include CuroNZ’s NRP2945, ENDECE Neural’s NDC-1308, Karo Bio AB’s ERbeta agonists, and Karyopharm Therapeutics Inc.’s Selective Inhibitors of Nuclear Export (SINE) compounds.
Ending MS Forever Progress was made identifying some factors that may combine to increase a person’s chances of developing MS, such as specific genes, infections, and lifestyle factors. None of these factors is a single cause of the disease, and it’s clear that not everyone who has MS has been exposed to these factors, nor that everyone who is exposed to these factors will develop MS. These clues provide insights that may ultimately lead to ways to prevent the disease:. • A global consortium identified 48 new MS risk genes, with funding from the National MS Society and others, which better define the biological pathways leading to MS and may ultimately lead to ways to prevent the disease and enhance the design of better treatments. • A study suggested that the MS incidence is higher in African-American women than previously thought, and researchers pinpointed genetic differences between African-Americans and Northern Europeans who have MS. • New studies reported that eating fatty fish has the potential to reduce the risk of developing MS, and
that smoking increases the risk of developing MS, as does obesity in girls. • To further efforts to end MS forever, in 2013 the Society: recruited experts to launch the MS Prevalence Work Group, and engaged a consulting group, to begin work that will provide an updated estimate of MS prevalence in the US; and launched new research funding totaling $2.5 million for an expanded Network of Pediatric MS Centers and data coordination hub, which can be leveraged to answer important research questions to advance our understanding of the disease in both children and adults with MS.
This past year has been a year of significant research progress, bringing us closer to solutions for everyone with MS. Looking ahead, the Society is committed to fueling research by increasing its annual investment to $50 million in 2014 – because understanding and ending MS can’t come fast enough.
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MOVING TOWARD A WORLD FREE OF MS
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