MOVING TOWARD A WORLD FREE OF MS SPRING 2015
CONNECTION The Official Magazine of the National MS Society South Central Region
Featured Articles
14 • A COMMUNITY CONNECTS to tag team ms 22 • 5 TIPS to living your best life 20 • HOW TO CREATE A fundraising TEAM
to ity l Q uar e Access gh Ca i H
WELCOME
If You or Someone You Know Has MS Studies show that early and ongoing treatment with an FDAapproved 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 to learn about ways to help manage multiple sclerosis and about current research that may one day reveal a cure.
Susan Visual Artist Diagnosed
in 198 8
MUSICIAN n e l a G Diagnose
d in 2011
“People affected by MS can live their best lives as we stop MS in its tracks, restore what has been lost and end MS forever.”
NationalMSSociety.org
1.800.344.4867
The National MS Society is proud to be a source of information about MS. The content is based on professional advice, review of independent research, published experience and expert opinion. The National MS Society makes no warranties regarding the information provided and the information is provided for your educational purposes only. Any provided medical information is of a general nature and should not be substituted for the individual therapeutic recommendation or prescription by a medical professional. For specific information and advice relating to your personal medical condition, always consult your personal physician.
CONTACT
2
IDEA
LEARN
MS CONNECTION • SPRING 2015
CONNECT
SIGN UP
SHARE
Get Connected: Look for these icons throughout MS Connection Magazine
REGIONAL UPDATE
Living Your Best Life Together we are stronger than M S
W
alk MS events are here and there is an opportunity for all. You can help spread the word, volunteer your time, donate or participate as an individual or as a team. Not only do we want to raise crucial funds for research and to improve the quality of life for thousands with MS and their families, but we want to raise awareness and an understanding of multiple sclerosis. You can find a walk in your area by visiting walkMS.org.
Globally we are coming together for World MS Day on May 27, 2015. The theme is access: access to diagnosis, treatment and support; access to buildings, travel and leisure; and access to education, training and employment. Equality of access means access to the same tools, services and facilities that people who do not have MS enjoy. Everyone should have the ability to live their best life NOW. Living with MS involves all kinds of challenges and we want to commemorate the ways that people all over the world are breaking down the barriers to living with MS. We want to celebrate our impact and successes together as we create a world free of MS. We want to celebrate you and your connections.
Regional Executive Vice President
MARK NEAGLI Board of Trustees Chairman
WILLIAM BYERLEY Houston, TX Treasurer
DON McCORMACK Houston, TX Secretary
DAVID CARDER Tulsa, OK
TELL US WHAT YOU THINK! This quarter, we are introducing a new and improved MSConnection. We want to hear from you! What do you like about our quarterly magazine? What types of stories would you like to see? Help us make this your magazine. Go online and take a quick 5
Thank You,
minute survey. Anyone
Mark Neagli
who completes the survey
by
June
1
will be entered into a drawing for some cool National MS Society gear!
Regional E VP
MSSOUTHCENTRAL.ORG/FEEDBACK
3
SOUTH CENTRAL REGION
ARKANSAS https://MSarkansas.org
Walk MS
@NMSSarkansas
Little Rock 1100 N. University, Ste. 255 Little Rock, AR | 72207 | 501.663.8104
LOUISIANA
https://MStexas.org /NMSStexas
https://MSlouisiana.org /MSlouisiana |
TEXAS
@NMSSLouisiana
Metairie/New Orleans
4613 Fairfield St. Metairie, LA | 70006 | 504.322.3790
NEW MEXICO https://MSnewmexico.org /MSnewmexico | @MSsocietyNM Albuquerque
@MSsocietyTX
Amarillo 3350 Olsen Blvd., Ste. 1700 Amarillo, TX | 79109 | 806.468.8005 Austin 9600 N. Mopac, Ste. 150 Austin, TX | 78759 | 512.340.2700 Houston 8111 N. Stadium Drive, Ste. 100 Houston, TX | 77054 | 713.394.2900
3540 Pan American Fwy NE, Ste. F Albuquerque, NM 87107 | 505.243.2792
Lubbock 3610 22nd St., Ste. 301 Lubbock, TX | 79410 | 888.999.7992
OKLAHOMA https://MSoklahoma.org /MSoklahoma | @Oklahoma_NMSS
Midland 1031 Andrews Highway, Ste. 304c Midland, TX | 79701 | 432.522.2143
Oklahoma City 730 W. Wilshire Blvd., Ste. 103 Oklahoma City, OK | 73116 | 405.488.1300
North Texas 2105 Luna Road, Ste. 390 Carrollton, TX | 75006 | 469.619.4700
Tulsa 4606 East 67th St., Ste. 103 Tulsa, OK | 74136 | 918.488.0882
San Antonio 9380 Colonnade Blvd. Ste. 130 San Antonio, TX | 78230 | 210.694.3200
facebook.com
twitter.com
Call. Click. Connect.
MS Navigator 速 800-344-4867, option 1, contactusnmss@nmss.org
MSConnection.org
CONTENTS 06 LEADERS IN THE MOVEMENT
VOLUNTEERS
We recognize volunteers who model the culture we envision for the entire Society; a culture in which volunteers lead, inspire and educate other volunteers.
8 Erin & Amber Both diagn
osed in 20
11
MS ENTREPRENEURS: VIRTUAL REALITY Walk MS The MS Entrepreneurs program, presented by Kanaly Trust, seeks to fund projects that help implement creative solutions that improve the quality of life for everyone affected by MS.
10 GOLDEN CIRCLE: SEEING IMPACT
The Golden Circle is comprised of leaders in the MS movement who are energized about supporting and expanding the MS movement.
EVENTS
12 It’s More than a Bike Ride 14 A Community Connects to Tag Team MS
16 Connect the Docs
COVER STORY
DONORS
Access to High Quality Care
World MS Day will bring the MS community together on May 27, 2015 to celebrate and promote equality of access. While access can be many things, we know that few things are more foundational to an individual diagnosed with MS than access to high quality healthcare. Within South Central, we work to achieve this through medical professional outreach and advocacy efforts, and it’s a role in which anyone can take part.
wellness
22 5 TIPS TO LIVING YOUR BEST LIFE WITH MS
For a person living with multiple sclerosis, the road to wellness involves more than the treatment of the disease. It is equally important to nurture your emotional, physical, spiritual, and social well-being to achieve good health.
24 PARTNERS IN MS CARE 26 Blood Stem Cell Transplantation Study 28 QUARTERLY PHOTOS, 2014
30 DIY
31 CALENDAR
MEDICINE RESEARCH bE SEEN
Get Connected
5
VOLUNTEERS
LEAD | INSPIRE | EDUCATE
LEADERS MOVEMENT IN THE
Each quarter, 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.
Jimmy Fahrenholtz began his involvement with
Jim m y
the National MS Society volunteering for Bike MS: Dat’s How We Roll in Louisiana. As a proven mover and a shaker, he quickly became engaged in other volunteer opportunities to further the Society’s mission. As a former elected official, Jimmy leverages his contacts and talent to connect legislators with the Society, and more importantly, connects them to people living with multiple sclerosis. The stories he heard while volunteering at Getaway Weekend inspired him, and he now uses that experience to fuel his advocacy efforts at state and federal levels. In addition to being Chair of the Louisiana Leadership Council, Jimmy has volunteered at Bike MS for six consecutive years and counting, chairs the Louisiana Government Relations Committee, has emceed and serves on the committee for A Vintage Affair, and volunteers for Getaway Weekend and Walk MS events in Shreveport and New Orleans. He feels one of his largest accomplishments to date has been inspiring people living with MS to speak up, to advocate for themselves and others, and to help affect change in their own world. With Jimmy leading the charge, we are excited to see what lies ahead for people living with MS and the National MS Society.
...one of his largest accomplishments to date has been inspiring people living with MS to speak up...
6
MS CONNECTION • 1.800.344.4876 • SPRING 2015
Above: Lynn’s 1st tattoo - A symbol of a mother’s love
Lynn Lynn Peters, a
Programs and Services volunteer in New Mexico, works diligently to organize and input service provider forms. Ensuring accurate and current information enables the Society to provide the most relevant referrals to people affected by multiple sclerosis. This volunteer work is crucial to our success in providing quality service and resources so people impacted by MS can live their best lives. Lynn began volunteering with the National MS Society in 2007 shortly after her son, David, was diagnosed with MS and has since become an integral part of the Albuquerque office and fundraising events. She helps to recruit and schedule volunteers for Bike MS: Pedal los Pueblos and the four Walk MS events in New Mexico, serves as a member on Walk MS and Bike MS committees, is a team captain for Walk MS Team Junebugs, and supports the local Leadership Council’s Golf Fore MS. Lynn’s commitment to creating awareness and bringing others to our mission runs deep; some of it is literally skin-deep. In 2012, Lynn got a tattoo - a small orange ribbon with her son’s name on her wrist. Not only is it a conversation starter, it is a symbol of a mother’s love. To Lynn, no volunteer job is too big, too small or too tedious; for her, they’re all a means to an end – an end to multiple sclerosis. She makes it clear she plans to continue to volunteer, wherever and however possible, until there is a cure.
Learn how you can find your connection as a volunteer. Visit volunteerMS.org.
Left: Lynn keeping busy at her work station at the New Mexico Office.
...no volunteer job is too big, too small or too tedious; for her, they’re all a means to an end – an end to multiple sclerosis. We take the guess work OUT of volunteering. Fill out the Volunteer Interest Form and our Volunteer Engagement Specialists will match you with the perfect volunteer opportunity. See where your match will go!
volunteerMS.org
VOLUNTEERS
Virtual Reality Walk MS An MS Entrepreneur’s Story By Kristina Kaltenbach
T
re ideas changing the futu
he Walk MS experience is a powerful way to rally a community together, walking side-by-side and raising funds to support everyone affected by MS. But what about connecting a broader community through this event? That’s just what two doctors set out to do last year, armed with a solid foundation of research and funding from the MS Entrepreneurs grant program. Dr. Rongkai Guo and Dr. John Quarles set out on a journey to create a virtual interface of Walk MS using the AT&T Center, home of the Walk MS: San Antonio, as the prototype. They aimed to create a system where individuals would be able to “walk” through a virtual simulation of the event along with the participants physically in attendance. The first step to making their project a reality was funding. The MS Entrepreneurs program, presented by Kanaly Trust, seeks to fund projects like Virtual Reality Walk MS because they implement creative solutions that improve the quality of life for everyone affected by MS. For the Virtual Reality Walk MS, their solution was connecting people to the Walk MS community from anywhere in the world without any mobility limitations. Dr. Guo and Dr. Quarles began the grant process by completing an application explaining the purpose of their project, the projected expenses and desired outcomes. Dr. Guo expounded on the high potential Virtual Reality Walk MS would offer for increased
8
Top: Congressman Lloyd Doggett testing out the Virtual Reality Walk MS: San Antonio system. Bottom: Congressman Lloyd Doggett, Chao Mei, and Dr. Rongkai Guo at Walk MS: San Antonio 2014 where they unveiled the Virtual Reality Walk MS system.
MS CONNECTION • 1.800.344.4876 • SPRING 2015
Left to Right: Dr. Rongkai Guo, Dr. John Quarles, and doctoral student Chao Mei posing with Miss Texas USA 2014 Lauren Guzman at the Walk MS: San Antonio 2014.
fundraising saying, “Remote participants will feel more involved in the event since they will be ‘virtually’ walking with other supporters and people with MS in a 3D online multiplayer environment.” In addition they “eventually want to integrate this technology into home based exercise and rehabilitation programs to help people with MS strengthen their balance and pattern of walking.”
fundraisers physically walking the route, while their family members and friends from across the country are simultaneously walking beside them in the virtual world,” she said. As the Walk MS virtual system continues to develop, Dr. Guo hopes to expand this platform to more Walk MS events throughout the region. One of their main goals with this project is to increase the donors’ experience and thus increase fundraising for MS research.
“...eventually want to integrate this technology into home based exercise and rehabilitation programs to help people with MS strengthen their balance and pattern of walking.”
After receiving the MS Entrepreneurs grant in the fall of 2013, Dr. Guo was able to build the first prototype in just four months. The money received from the grant helped with acquiring the critical technology to build the virtual reality system and customize it to seem as real as possible. Dr. Guo drew on his technical experience in designing 3D games for exercise and rehabilitation and combined it with his and Dr. Quarles’ research in virtual reality experiences for people with mobility impairments, including MS.
At Walk MS: San Antonio on March 1, 2014, they had multiple stations set up on site for people to test the Virtual Reality Walk MS system, in addition to remote log-ins that allowed donors to participate in Walk MS: San Antonio from anywhere in the world. Participants were amazed by the system’s accuracy to the actual walking route. DeAnna Stansberry, Development Manager at the Society, was excited to once again welcome the Virtual Reality Walk MS at Walk MS: San Antonio on March 7, 2015. “It is very moving to think about
They are adding options to use the system on smart phones and tablets, as well as fun options like the ability to take selfies within the simulation. Dr. Guo’s team is also continuing to build their database of user information so they can implement what they learn into a c c e s s i b l e virtual rehabilitation games for people with MS. To learn more about Virtual Reality Walk MS, visit www.rongkaiguo.com. Have a creative idea that could improve the lives of people living with MS? Check out the MSEntrepreneurs website to learn more.Applications may be submitted twice a year, by April 15 or October 15 at MSentreprenuers.org
MOVING TOWARD A WORLD FREE OF MS
9
T he G olden C ircle :
Seeing
Impact and
Making
Connections By Kristina Kaltenbach
I Photo Left to Right: Kelly Field, Jennifer McGehee, and Tricia Davis attend a Golden Circle wine event.
The Golden Circle is comprised of leaders in the MS movement who are energized about supporting and expanding the MS movement.
n 2014, the National MS Society achieved a new milestone of investing $50.6 million into the largest MS research campaign to date. Although, raising $50.6 million did not happen instantly. It took thousands of people joining together to make a difference in the lives of people affected by MS, including members of the Golden Circle. The Golden Circle is comprised of individual donors who are energized about supporting and expanding the MS movement. Their devotion to the cause stems from many places, like a family member who lives with MS, a friend who is affected by the disease, or simply a cause they feel connected to and want to support. Through an annual gift of $1,000 or more, Golden Circle members are able to see how their donations are making a difference through unique cultivation opportunities. From quarterly NOW research updates, to research update calls, to lab tours, Golden Circle members are exposed to rare glimpses of the most promising research and therapies for MS. For Vickie McLauchlan, her Golden Circle experience began at a small dinner in Dallas where she heard from Regional Executive Vice President Mark Neagli about some of the newest advances in MS research. MS research is very close to Vickie and her husband’s heart because their daughter lives with MS. From this event, Vickie found hope in how the Society was using people’s gifts to fund research breakthroughs that could help improve their daughter’s life. Seeing the tangible impact of giving is an important part of the Golden Circle program. The transparency of giving
DONORS can sometimes be muddled in today’s age, but the Golden Circle program works to better communicate what all is being done. Golden Circle events gather a mixture of people together to hear from MS researchers, doctors, executives at the Society, and people living with MS. Jennifer McGehee hosted such an event with her mother in Baton Rouge, Louisiana and invited Dr. April Erwin, Neurologist & Specialist in Multiple Sclerosis, The NeuroMedical Center, Baton Rouge and Rebecca Pennington, Vice President of Development, Louisiana to speak about the work of the Society and its impact on people living with MS. At the end of her event, Jennifer personally thanked supporters for what they are doing to help
“All of us with MS want to thank you from the bottom of our hearts. Your generosity impacts our day-to-day lives in immeasurable ways.” ~ Jennifer McGehee people just like herself who live with MS. “All of us with MS want to thank you from the bottom of our hearts. You generosity impacts our day-to-day lives in immeasurable ways,” she said. The ability to contribute to the movement in such an intensely personal way is one of the reasons many Golden Circle members host events. Gail Williamson decided to host her own event after attending a Golden Circle event a couple of years ago where she was amazed by all of the information she learned. She couldn’t believe all of the strides that were being made and how the Society “is collaborating across the whole world to drive research for a cure.” Her event, a wine tasting at Nice Winery, primarily focused on thanking longtime donors, as well as new donors. Everyone raved over
the event because they learned about the Society and each other’s connection to the mission. Similar to Gail’s wine tasting, the Golden Circle brings together people from all parts of the Society and leverages networks to weave new people into the movement. As Vickie McLauchlan is planning her Golden Circle event for this spring, she has seen firsthand the power of sharing one’s passion and its ability to open new doors for spreading awareness about the work of the Society. Vickie is reaching out to her own circle of friends to host a barbeque dinner and concert. She is open in sharing why she supports the Society and has been humbled by the outpouring of encouragement she has received. Vickie feels comfortable asking her friends to be a part of her event because she “knows where the dollars are going and that they are making a difference NOW for people, like her daughter, who are newly diagnosed.” The Golden Circle program acts as a catalyst to help someone find what they are passionate about and present clear giving opportunities through personalized conversations and experiences. The Golden Circle exposes members to different areas of giving like MS research, MS scholarships, and programs and services. Along with a focused attention on the donor, other benefits of the Golden Circle include special access to local and national leadership; events, conference calls and webinars focusing on progress in MS research and the MS movement; breaking MS news alerts; and connections to other Golden Circle members who share a passion for creating a world free of MS. These benefits work to connect people throughout the movement and spark a new energy of empowerment that something can be done to end MS now. Interested in learning more about the Golden Circle program?
Please contact Shannon Nelson, Golden Circle Program Manager, at shannon.nelson@nmss.org or call 469-619-4704. MOVING TOWARD A WORLD FREE OF MS
11
EVENTS
It’s MORE than a Bike Ride... I’m a Top Fundraiser and Ride Marshal, But Read Why by Kurt Haaland
I
thought my wife, Brenda, just needed glasses to correct her blurry vision and eye problems in 1995, but I was wrong. The ophthalmologist delivered the diagnosis over the phone, “Brenda, you have multiple sclerosis.” We immediately saw a neurologist and received a steroid pack as treatment, and over the next five years, we managed her MS. I knew something was missing; I just didn’t know what. I searched the internet, but came up empty.
Kurt
Ride marshal
Statoil is an international energy company with operations in 36 countries. Building on more than 40 years of experience from oil and gas production on the Norwegian continental Sponsor shelf, we are committed Official of the Ride Marshal to accommodating the Program world’s energy needs in a responsible manner, applying technology and creating innovative business solutions. We are proud to be the official sponsor of the Ride Marshal Program. Not only do these good will ambassadors align with our values of open, hands on, courageous and caring – their focus on rider safety supports how we approach everything we do. Statoil was the recipient of the 2014 Platinum Safety Award, and we pledge to continue concentrating our efforts to support a safe and sustainable ride.
12
MS CONNECTION • 1.800.344.4876 • SPRING 2015
In 2000, my company transferred my family to California. It wasn’t until 2002, when we transferred to Houston with BP, that the sun started to shine. The light came from an unusual source, something called the BP MS 150. The entire BP campus was buzzing from all the excitement and adrenaline from the April ride. THIS was what I had been searching. I needed the bike ride and so did my family. I immediately jumped on-board and an entire support system opened its doors to my family and me about the ride, but more importantly about MS. My wife even found a new doctor, George Hutton, M.D., a cyclist and top fundraiser for the BP MS 150 and a member of National MS Society, South Central Board of Trustees. I was hooked and pumped for my first ride, Bike MS: Valero Ride to the River and ecstatic about the BP MS 150 from Houston to Austin that spring. I set two goals in addition to participating: become a top fundraiser and volunteer. There was a bit of a learning curve to becoming a top fundraiser, but I was very motivated and exhausted every resource I could from family, friends, online “My Participant Center” and Matching Gifts from
my employer, BP. I now belong to the various top fundraising clubs for each of the rides and have attended at least six Tour of Champions, an annual celebration for top fundraisers who have raised a minimum of $12,000 from a Bike MS event. For volunteering, I chose to become a Ride Marshal because safety is very important to me, and I wanted to help those in need on the bike route. Barron Lozano, co-chair of the Ride Marshal Program, says, “Ride Marshals are the heart of the BP MS 150 safety initiatives. All of these volunteers are registered riders who serve as Safety Ambassadors for the event. They are specially-trained in advanced cycling skills, First Aid, CPR and assist the
I knew something was missing; I just didn’t know what....The light came from an unusual source, something called the BP MS 150. participants on the route as they cycle their way to Austin providing basic mechanical assistance to riders, such as changing flat tires and fixing dropped chains, helping to keep them on the road. They also share their cycling knowledge with the riders as well as their experience of the BP MS 150. Their bright red jerseys are easily recognizable. Ride Marshals are a welcome part of both the training season and event weekend.” That was over 13 years ago. I am so proud of the BP MS 150, Bike MS: Valero Ride to the River and the National MS Society, and I am so happy I’m a part of it! Together, we’re making an impact on the lives of those that are living with MS including my wife, Brenda, by raising awareness and funds for multiple sclerosis.
Join Me.
Register. Recruit. Raise Funds.
For more info visit bikeMS.org13 MOVING TOWARD A WORLD FREE OF MS
EVENTS
A Community Connects to Tag Team MS By Breann Morris
Tag Team Group Photo
L
as Cruces residents, Sabrina and Joe Thieman, have always been an active part of their local community; Sabrina is an elementary school teacher at their local school district and Joe is an artist who also works in agriculture. Sabrina and Joe’s lives are busy juggling their job responsibilities and children. However, when the going gets tough, they support one another by rallying together as tag team partners. They overcome some of life’s biggest challenges by staying true to their family motto of, “tag-you’re it” and bearing the burden together. In the midst of their seemingly ordinary life, the Thiemans were thrown a curve ball that would test this motto like never before. In the fall of 2012, Joe began undergoing tests in an effort to pinpoint the cause of some sudden symptoms he had been having. Doctors suspected multiple sclerosis as one of the possible causes of his symptoms. A few months passed and so did an ongoing barrage of tests before Joe was officially diagnosed with relapsingremitting multiple sclerosis in the spring of 2013. Both Sabrina and Joe were thankful to have finally received
14
MS CONNECTION • 1.800.344.4876 • SPRING 2015
They overcome some of life’s biggest challenges by staying true to their family motto of, “tag-you’re it” and bearing the burden together. some definitive answers and that his diagnosis was not an aggressive form of MS. “I was initially scared when we heard the diagnosis because the people I knew growing up who lived with it had more severe symptoms,” Sabrina said. “Luckily that has not been our case.” Knowing that the journey had just begun, Joe and Sabrina decided to move forward by searching for more information about the disease and seeking out ways to connect with others also living with MS. They found the National MS Society, and soon after an MS support group in their area that they attended together.
Additionally, they made the decision to form a team for Walk MS: Las Cruces. Walk MS is a powerful way to connect individuals affected by MS and those who care about them through a community fundraising event that gives hope to everyone impacted by MS. As a spouse of someone living with MS, Sabrina gravitated toward that call. She decided to form a walk team and stepped right up as team captain. Inspired by their family motto, Tag Team MS was born. Sabrina launched her team with the help of social media, reaching out to family, friends and co-workers. The positive response and willingness to become involved was overwhelming. A large portion of the team grew from local supporters but the Thiemans also had family and friends who flew in to participate from Arizona, California, Florida and Missouri. The team at Walk MS: Las Cruces 2014 rallied together with more than 75 supporters who raised over $5,000. The firstyear team was also the largest team at the event!
Above: Joe and Sabrina Thieman at Walk MS: Las Cruces 2014
2015
Sabrina notes that, “Participating in Walk MS helps create connections so that together, we can tag team MS and stop the disease in its tracks,” Sabrina said. Thanks to their participation in the walk, the Thiemans have made lasting connections and continue to drive the vision forward toward a world free of MS. Since Joe’s diagnosis, he has been able to maintain the quality of life that he and his family are accustomed, thanks to medications and managing his diet and exercise. The Thiemans and their strong support system of family and friends plan to gather together again for Walk MS: Las Cruces 2015 with the same passion and vision that fueled their success last year— raising awareness and funds to find a cure for MS now! Sabrina also hopes to become more involved in the area of advocacy with the Society and make an even bigger impact year after year individually, as a family and more importantly, as a community. It only takes one person to inspire hundreds — that’s the power behind being a team captain. As a team captain you become a leader in a powerful movement towards a world free of MS.
Visit walkMS.org and create your team today!
2014 1.855.372.1331 walkMS.org MOVING TOWARD A WORLD FREE OF MS
15
o y t s lit s ce u a c A h Q re lberg g Ca ly Tul i l H e
K By
T
Above: Partner in MS Care, Dr. Elliott Frohman, connects with medical students at last year’s Cooperative Meeting of CMSC & ACTRIMS in Dallas. The National MS Society provides scholarships for interested medical students to attend each year in order to introduce students to the opportunities available working with MS.
16
here’s one thing that everyone living with multiple sclerosis needs, regardless of where they live, how long ago they were diagnosed and what type of MS, their age, or their net worth. That need is access to high quality MS care. In November 2014, the National MS Society adopted six principles to guide our work in achieving access to high quality MS healthcare for everyone impacted by MS in order to live their best life. In South Central, we are working to improve access to care in the following ways: growing a network of partners that are connected to the Society and to each other; growing the MS workforce by reaching out to medical students; providing outreach and education to the healthcare community; and advocating for affordable and accessible healthcare on the state level. It is work that anyone impacted by MS can get involved in, and it makes a real impact right now.
MS CONNECTION • 1.800.344.4876 • SPRING 2015
COVER STORY
Making a Connection
B
arbara Leonard was volunteering in the Albuquerque office when she learned about a new program being launched - the Community Health Relations Representatives (CHRR) program. The program recruits volunteers to reach out to medical professionals and serve as a connection between them and the Society. They provide information about programs and services, and they link doctors to the Society’s Professional Resource Center suppor ting MS Clinical Care. “It made a lot of sense to me,” she said. “I know a lot of people have a hard time getting diagnosed. Not everyone lives where there are plentiful medical facilities. They have to travel or go through a primary care physician who may not know as much as a neurologist about MS.” The South Central region covers a large area (Arkansas, Louisiana, New Mexico, Oklahoma and Texas), and more than half of it is rural. In 2012, the region conducted a health care needs survey among rural counties and found that nearly 40 percent of respondents reported barriers that hinder access to MS care including travel issues, cost, and finding knowledgeable doctors. Barbara was trained as one of the first volunteers for the CHRR program, but soon after she stepped up to serve as the program manager, helping to recruit and train other volunteers. In the beginning, volunteers were primarily MS Ambassadors who had an interest in reaching out to physicians they already knew. Relationships were built through inperson visits. Over time, Barbara was able to train volunteers in underserved areas and give them a target list of medical professionals in their area with whom to connect. Due to the large size of South Central, an email program was developed to expand capacity allowing
CHRR program members to reach out to physicians virtually. “We would never have enough volunteers to see every physician in our region. Phone and email may not be the closest connection you can make with a doctor, but it’s still a connection,” Barbara said. “This is something that anyone can do. You can do it from home.” The CHRR program gave Barbara something tangible to do to make an impact. “I’m not a doctor or a researcher. I’m not going to find a cure, but I can do something,” she said. “We need the drugs and a cure, but in the meantime, there are a lot of people living with MS. We have to get healthcare to the people living with it right now. Best way to do that is through their doctors. We can’t expect doctors to stay current on everything, but we can be a conduit for new treatments and information. We are getting information out.”
We need the drugs and a cure, but in the meantime, there are a lot of people living with MS. We have to get healthcare to the people living with it right now.
Investing in the Future
D
r. Jesus Lovera, Assistant Professor of Neurology and Co-Director at Louisiana State University’s Multiple Sclerosis Clinic and Co-Chair of the National MS Society’s South Central Access to Care committee, sees medical students as an important audience for improving access to care. Each year, South Central connects with medical students through educational opportunities, scholarships and fellowships. To Dr. Lovera, these efforts are vital for bringing in new providers to treat MS. “Reaching out to medical students through things like the fellowship we are offering at the MS Comprehensive Care Centers gives students critical exposure to MS and what opportunities exist. Students have a very short rotation on neurology, and they get very little exposure to MS since MS patients aren’t normally in hospitals,” he said. “MS is MOVING TOWARD A WORLD FREE OF MS
17
COVER STORY complicated and moves rapidly, so we need to keep people updated, get more MS providers, and help the providers become more confident with MS and the field.” However, Dr. Lovera says our work can’t stop with just students and doctors. Because MS is such
Below: MS Activists Linda Roudebush and Karen Schwartz meet in Austin for the 2015 Texas State Action Day to advocate for prescription drug access during insurance appeals.
a complex disease, it requires a comprehensive approach. In order to treat the disease, manage symptoms, improve function and safety, and address emotional health, it is vital we engage the larger medical community - nurses, social workers, psychiatrists, physical therapists and occupational therapists. The Access to Care committee is tasked with such work so we are able to connect with and educate a broad audience.
Speaking Up for Care
T
he Access to High Quality MS Healthcare principles include ensuring affordable healthcare to those who need it. The rapid evolution of the healthcare system in the United States, inspired in part by MS activists, has led to significant progress in the care and treatment of people with MS. Yet, much vital work remains to be done.
“MS is complicated and moves rapidly, so we need to keep people updated, get more MS providers, and help the providers become more confident with MS and the field.” This year, the Society introduced legislation in all five South Central states to address one of the barriers to quality healthcare: access to prescription drugs during an insurance appeal process. The issue was inspired by a story MS Activist, Linda Roudebush, shared, and it quickly became evident this was a barrier faced by many individuals living with MS.
karen & Linda MS Activists play an important role in improving access to healthcare for individuals living with multiple sclerosis.
18
MS CONNECTION • 1.800.344.4876 • SPRING 2015
“I received a letter from my insurance company letting me know a medication that improves my mobility, Ampyra, would no longer be covered. Ampyra is expensive - $6,000 per month without insurance. When I called to express my concern, the representative informed me that a panel of pharmacists decided that the Ampyra was no longer providing the promised benefits and therefore did
not warrant continuing the medication. Not one of these panel pharmacists had talked to or seen me or my doctor prior to denying coverage of Ampyra,” Linda explained. She appealed the decision, but she was left without her medication during the appeals process. Without it, her mobility declined and she fell often. With the proposed legislation, individuals would be able to continue their medications during the appeals in order to protect their health and well-being. Oklahoma MS Activist, Anika Safi, attended her first State Action Day this year so that she could speak up on this issue. “I just want the legislators to understand that if people have to go off their medicine to go through the appeals process, it could
result in our disease progressing faster or having unbearable symptoms. Once we hit the progressive phase, there are NO more medications available. We can’t afford a break in coverage.” MS Activists work year-round to connect with and educate legislators about all the challenges affecting individuals impacted by MS. In addition to the Prescription Access bill, priority issues include advancing research for neurological diseases, transparency in healthcare costs, Medicaid expansion and more. The ultimate goal of affordable, high quality healthcare may seem elusive, but it is within grasp if everyone affected by MS commits to improving the system through a collaborative effort.
These 6 principles are driving the work of the National MS Society in achieving high quality healthcare for everyone living with MS:
1.
People with MS are at the center of their healthcare decision-making.
4. Healthcare providers have greater awareness,
resources and tools to enable the timely diagnosis, treatment and symptom management of MS.
2. People with MS have access to
5. People with MS have access to and receive high
3. People with MS have access to
6. People with MS h ave acce ss to high-quality
a comprehensive network of providers and healthcare services focused on producing the best outcomes at affordable costs.
comprehensive health insurance plans with affordable premiums, deductibles and other out-of-pocket costs
quality MS care regardless of disparities, including but not limited to disease progression, level of disability, geographic location, socioeconomic status, gender, sexual orientation, race/ethnicity, cultural background, age and care setting.
long-term supports and services in settings that best meet their needs and prevent financial hardship for the individual and family.
• To learn more about how you can become a community health relations representative, visit volunteerMS .org
• An MS Navigator is standing by to provide information and referrals for your healthcare needs. Call 800-344-4867, option 1.
• To learn how you can share your story and advocate on behalf of individuals living with MS in your state, visit nationalMSsociety.org/msactivist.
• The Clinical Care Network is a free resource for healthcare professionals, providing tools, information and consultations. Tell your doctor about nationalMSsociety.org/MSclinicalcare.
Together Everyone Achieves More PARTICIPATING IS MORE FUN WHEN YOU ARE PART OF A TEAM! AND IT’S SO EASY!
Register
TEAM CAPTAINS MUST REGISTER THEMSELVES FIRST AND CREATE A TEAM before other members can join or register.
Recruit
TEAMS MUST CONSIST OF FOUR OR MORE MEMBERS There’s no limit after that; the more, the merrier! TEAM MEMBERS CAN BE ANYBODY Family, friends, co-workers, even neighbors. THINK OUTSIDE YOUR ZIP CODE Reunite with friends and family who live around the nation. They can fundraise in their area, and then join you locally on the day of the event.
Fundraise
ONLINE through your participant center. WALK MS AND BIKE MS APPS in available in the Apple App store and Google Play. SOCIAL MEDIA Find more fundraising ideas at walkMS.org and bikeMS.org, under the “Make an Impact” tab.
Celebrate
THESE ARE MORE THAN FUNDRAISING EVENTS — THEY ARE CELEBRATIONS OF HOW FAR WE’VE COME TOGETHER. Our events are about a community coming together to create a world free of MS and the accomplishment of a physical challenge. Take time to stop and celebrate!
WANT MORE INFO ON TEAMS? Contact your local development staff or call 1.855.372.1331.
20
MS CONNECTION • 1.800.344.4876 • SPRING 2015
PROGRAMS & SERVICES
Be a Connector in Your Community Self-help groups bring people together who share common life experiences for support, education and mutual aid. National MS Society self-help groups may focus on support, advocacy, education, or be more social in nature. Some groups also serve specific populations, such as young adults, parents with MS, carepartners, Spanish-speaking or African-Americans. Members of self-help groups share a belief that positive personal change happens through individual efforts with the support of others.
Brooke
Diagnosed
in 198 8
Do you see a need for a group in your area? Maybe a group that targets a specific demographic or activity? We are always looking to train and mentor new self-help group leaders. Contact Amy Woolsey at amy.woolsey@ nmss.org or 800-323-4873 to learn how you can be a connector for the MS community as a self-help group leader.
CONNECT TO THE INFORMATION YOU NEED
Kim, diagnosed in 1986
Learn more at nationalMSsociety.org/telelearning or call 1-800-344-4867 MOVING TOWARD A WORLD FREE OF MS
21
5 WELLNESS
TIPS
TO LIVING YOUR BEST LIFE WITH MS: By Laura Johnson
1
Controlling Every Day Stressors • The first step to becoming healthy is gaining control over the daily stressors of everyday life and managing triggers that may lead to an unhealthy life. • Part of gaining control over your life means being your own best advocate. Self-advocacy means speaking up for oneself and effectively communicating a desire, need, or right. Effective selfadvocates recognize individual strengths and needs, seek personal goals, and understand legal rights and responsibilities. • Self-advocacy comes into play when making stressful decisions about employment, school, health insurance, medical care, relationships, family and more.
2
• The National MS Society has programs and tools to help.
Staying Active and Mobile • Exercise is essential to general health and well-being, but it can also be helpful in managing many MS symptoms. Participating in aerobic exercise can cause benefits in cardiovascular fitness, improved strength, less fatigue and depression, and a more positive attitude. • Join a local wellness class, Walk MS or Bike MS event to continue staying active and meeting other people living with MS. • For many people living with MS, staying mobile can be achieved through effective symptom management, mobility aids, automobile adaptations and assistance animals.
22
MS CONNECTION • 1.800.344.4876 • SPRING 2015
3
Food For Thought • Healthy eating is important for people with any chronic disorder. MS specialists recommend that people with MS adhere to the same low-fat, high-fiber diet that is recommended for the general population. • Proper nutrition can make an important contribution to your health. Although there’s no special “MS diet,” what and how you eat can make a difference in your energy level and overall health.
4
eXPANDING YOUR CIRCLE • Join a local National MS Society self-help group, wellness class, peer connection, or create a group in your own community. Join groups to connect with people who share your same interests, challenges and hopes. • Isolation only intensifies depression and poor health, so it is important to make that extra effort to stay social and create a support system.
5
time for a check up • Visit your doctor or neurologist if any new symptoms or difficulties arise. Remember to listen to your body and be your own best advocate for your health. • Before a visit with your doctor, practice describing your specific symptoms and concerns as clearly and concisely as possible to get the most out of your visit.
Learn more at NationalMSsociety.org/ Living-Well-With-MS or by contacting an MSNavigator: 800-344-4867, option 1. Get more tips with our Wellness Wednesday posts on Facebook, or join the conversation at MSConnection.org.
MOVING TOWARD A WORLD FREE OF MS
MEDICINE
Partners in MS Care
The National MS Society’s Partners in MS Care program recognizes and supports quality MS care. The program involves healthcare professionals in the areas of neurology, rehabilitation, mental health, and comprehensive MS Care. The South Central Region of the National MS Society is proud to announce the following new Partners in MS Care.
Ann Bass M.D. Ann Bass, M.D. is a board certified neurologist with 22 years of experience practicing medicine. She is one of several neurologists at the Neurology Center of San Antonio, P.A. as well as the Medical Director of the Neurology Institute of San Antonio’s Infusion Therapy Center. She is affiliated with multiple hospitals within San Antonio and is an Adjunct Assistant Professor at the University of Texas Health Science Center at San Antonio, where she also received her medical degree and completed her residencies.
Abbey Valvano, PhD Abbey Valvano, PhD is a licensed psychologist specializing in health psychology. She is housed in the Department of Neuropsychology at the Baylor Institute for Rehabilitation (BIR) in Dallas, TX, where she conducts outpatient individual and group therapy with patients living with MS and other chronic medical conditions. She received her doctorate from Marquette University in Milwaukee, WI, completed her internship training at the University of Wisconsin-Madison, and her postdoctoral fellowship in health psychology at the Medical College of Georgia.
Finding the right provider and learning to advocate for the care you need is important.
To learn more about Partners in MS Care in your area, please visit nationalMSsociety.org or call 800-344-4867, option 1.
24
MS CONNECTION • 1.800.344.4876 • SPRING 2015
Together we’re
Stronger than MS
Living with MS involves all kinds of challenges. In the run up to World MS Day 2015, we want to celebrate the ways that people all over the world are breaking down the barriers to living with MS. What’s the idea?
What then?
How do I get involved?
#strongerthanMS
www.worldmsday.org MOVING TOWARD A WORLD FREE OF MS
25
RESEARCH UPDATES
Blood Stem Cell Transplantation Study
Shows Promise in People with Relapsing-Remitting and Secondary-Progressive MS In a small, phase II study of blood stem cell transplantation in people with relapsing or secondaryprogressive forms of multiple sclerosis, disease activity on MRI scans was reduced significantly more than the disease-modifying therapy mitoxantrone. Larger, well-controlled clinical trials are needed to determine whether this experimental approach will prove to be a safe and effective solution for people with MS. This study was sponsored by the Italian MS Association.
Background: One type of procedure that has been explored for many years in MS is called “autologous hematopoietic (blood cell-producing) stem cell transplantation” – or HSCT. This procedure has been used in attempts to “reboot” the immune system, which launches attacks on the brain and spinal cord in people with MS. In HSCT, these stem cells (derived from a person’s own bone marrow or blood) are stored, and the rest of the individual’s immune cells are depleted usually by chemotherapy. Then the stored stem cells are reintroduced back to the individual’s bloodstream. The new stem cells migrate to the bone marrow and over time produce new cells. Eventually they repopulate the body with immune cells. The goal of this currently experimental procedure is that the new immune cells will no longer attack myelin or other brain tissue, providing the person, what is hoped to be, a completely new immune system.
THE sTUDY:
26
Investigators enrolled 21 people with relapsingremitting or secondary-progressive MS who had experienced disease worsening in the past year despite taking disease-modifying therapies. Nine participants received HSCT after a regimen of treatments that suppress the immune system, and a comparison group of 12 people received treatment with mitoxantrone 20 mg/month for six months. Mitoxantrone is a powerful immune system-suppressing drug that is approved for use in
MS CONNECTION • 1.800.344.4876 • SPRING 2015
“This study contributes to our knowledge of the potential of blood stem cell therapy for the treatment of multiple sclerosis” people with secondary -progressive, progressiverelapsing, or worsening relapsing-remitting MS. Participants were followed for four years. The primary endpoint tested in this study was measurement of new disease activity on MRI scans at four years, and other endpoints including relapse rates and progression of disability.
RESULTS: MRI scan results after four years were available from 17 participants, and suggested that stem cell therapy did a better job of suppressing disease activity. The cumulative number of new brain lesions was 79% less in the stem cell group compared to the mitoxantrone group. No new active (“gadolinium enhancing”) lesions appeared on MRI scans in the stem cell group, while 56% of the mitoxantrone group had new active lesions. Clinical results were available from 20 trial participants, and showed significant reductions in relapse rates in the stem cell group versus mitoxantrone. There were no statistically significant differences between the treatment groups in terms of the amount of progression experienced during the trial and after four years. Several serious adverse events occurred in the stem cell group, including sepsis (blood infection), slowed heart rate, and systemic fungal infection. All resolved, and there were no deaths. Those on mitoxantrone also experienced adverse events including decreased white blood cells, anemia and disruption of menstruation. Adverse events occurred in 80% of all participants.
COMMENT: “This study contributes to our knowledge of the potential of blood stem cell therapy for the treatment of multiple sclerosis,” noted Bruce Bebo, PhD, Executive Vice President of Research at the National MS Society. “Larger, well-controlled clinical trials will need to be performed before we can know the full potential of this promising stem cell approach to MS treatment.” There are significant risks involved in hematopoietic stem cell transplantation, and it’s important that studies such as this one be conducted to ensure that this will be a safe solution for people with MS, with significant clinical benefit. With the urgent need for more effective treatments for MS, particularly for those with more progressive forms of the disease, the National MS Society believes that the potential of all types of cell therapies must be explored. The Society is currently supporting 15 research projects exploring various types of stem cells, including cells derived from bone marrow, fat and skin, and has supported 70 stem cell studies over the past 10 years.
To learn more about the Society’s research initiatives, progress made, and how you can get involved, visit nationalMSsociety.org/research.
MOVING TOWARD A WORLD FREE OF MS
27
BE SEEN
Walk MS Houston Walk MS Houston
ON the Mov
SOUTH CENTRAL REGION
Quarterly Photos 2014 MSActivists shared their story and connected with state legislators this spring in Santa Fe, NM on Jan. 28, Austin, TX (pictured below) on Feb. 10, and Oklahoma City, OK on Feb. 11. Work is also planned for Arkansas and Louisiana. Follow our progress on Twitter @MSActivist.
28
MS CONNECTION • 1.800.344.4876 • SPRING 2015
State Action day New
ve DALLAS
Mexico
On the Move Luncheons bring the community together to encourage people to give from the heart to support their family members, friends and colleagues whose lives are touched by MS. The 2014 Dallas On the Move Luncheon on October 10, 2014 featured Country Music Artist and MS Ambassador, Julie Roberts, and honored the legacy of Dee Wynne. Pictured: Janie Robertson, Honorary Chair Suzanne Robertson, and Malcolm Robertson at the 2014 Dallas On the Move Luncheon.
New Mexico Senator Michael Padilla and Attorney General Hector Balderas met with MS Activists in January to offer their support on MS priority issues, including legislation that will protect access to medications during an insurance appeals process. Fourteen MS Activists registered this year to share their story and connect with legislators at the 2015 New Mexico State Action Day.
fUELING iMPACT DALLAS At the 2014 Society Leadership Conference, the Joubran children “roared” in support of their mother, aunt and hero, Rita Joubran, with a live performance of their video “We’re Gonna Beat MS.” (AJ Joubran, Tanya Joubran, George Joubran, Yasmeen Hage, Nour Hage, and Vanessa Kmeid)
a vINTAGE aFFAIR nEW oRLEANS People were dancing the night away at the 2nd annual, A Vintage Affair for MS in New Orleans, with a live performance from The Bucktown All-Stars on Friday, November 21, 2014.
MS GETAWAY O
K LAH O MA
This past November, individuals living with MS and their guests let the good times roll at a Mardi Grasthemed MS Getaway Weekend in Oklahoma. Guests enjoyed canvas painting, wellness exercises, games, food, a party and more as they connected with one another during the weekend retreat. MOVING TOWARD A WORLD FREE OF MS
29
DIY FEATURED STORIES
Do It Yourself (DIY) Fundraising is an opportunity for people with a deep commitment to the MS cause to raise awareness and critical funds for the MS movement in new and creative ways. By putting their own spin on fundraising, these individuals are able to take their passions and put them into action.
30
1.800.344.4876••SPRING SPRING2015 2015 MS MS CONNECTION CONNECTION••1.800.344.4876
“We don’t walk, we ride,” said Mary Howard when describing the beginning of the Cowboy Capital MS Trail Ride 19 years ago. This unique DIY fundraiser appeals to everyone’s inner cowboy as participants ride on horses through beautiful ranch trails in Stephenville, Texas. Between the morning and afternoon rides, there is an old-fashioned BBQ lunch and many creative prizes to win. Riders range in ages from three to 73 years of old. This year’s ride will be held on Saturday, May 2 and is open to anyone seeking a little adventure. Every year this event raises more than $15,000 for the Society. Francisco Martinez was diagnosed with MS 11 years ago, but shared the news with family and friends only two years ago. After learning about a project at an MS Comprehensive Care Center, Francisco decided that MS didn’t define him or his life - he did. With his new outlook on life, Francisco began raising awareness and funds for MS by running the Rock ‘n’ Roll San Antonio Half Marathon on December 6, 2014. Francisco sets an example to his daughters to persevere because as he says, “We all have battles in life.” A personal sacrifice lessened the sense of helplessness Roger Metz felt watching his son, Sheldon, live with MS. Roger decided to train for and run the MetroPCS Dallas Marathon on December 14, 2014 to raise money in support of MS research. Not an avid runner, Roger quickly created a running plan and began training. After countless hours of dedication, Roger ultimately crossed the finish line and ended up raising $8,100. Two days later, Roger presented the check during an orange out pep rally at the school Sheldon attended and where he currently teaches history. Over 400 people attended the pep rally and heard from Sheldon about what it is like to live with MS.
Get Connected
CALENDAR
APRIL
11 Walk MS: Albuquerque, Central Arkansas, Dallas, Lubbock and Shreveport 12 MS Beef-a-Thon - Amarillo, TX
“We all have battles in life” ~ Fransciso Martinez
14 Can Do MS Webinar - Living with Progressive MS 18 Walk MS: Baton Rouge, Las Cruces, Lawton, NW Arkansas, NW Oklahoma and Permian Basin Area 18-19 BP MS 150 - Houston-Austin 22 Louisiana State Action Day - Baton Rouge, LA 25 Walk MS: Roswell and San Angelo
MAY 2 2-3 5 8-10 12 16 19, 21 22 25 27
Walk MS: Santa Fe Bike MS: Sam’s Club Round Up Ride, North Texas On the Move Luncheon - Oklahoma City, OK Camp Can Do - Burton, TX Can Do MS Webinar: Language and Cognitive Issues with MS Walk MS: Central Oklahoma Telelearning: Sex Ed for Grownups – Intimacy in MS South Central offices close at noon for Memorial Weekend South Central offices closed for Memorial Day World MS Day
JUNE 9 Can Do MS Webinar: Exercise with MS 4-5 Louisiana Getaway Weekend - Woodworth, OK 20 Bike MS: Valero Ride the Rim - Canyon, TX
Learn more about DIY Fundraising by visiting nationalMSsociety.org/diy
Connect with the information, resources and individuals you need to live your best life. To learn Esti nam qui rendis dero il minvel invelig entibea more about calendar items, as well as self-help groups senvolor o il minvel inpls. me qui rend contact us at and wellness classes, contact an MS Navigator lee.kilborn@nmss.org at 800-344-4867 or visit nationalMSsociety.org. MOVING TOWARD A WORLD FREE OF MS
31
National MS Society | South Central Region 8111 North Stadium Drive, Suite 100 Houston, TX 77054
“
Courage doesn’t always roar.
Sometimes courage is the little voice at the end of the day that says
I’ll try again tomorrow. M ary A nne R admacher , an author and artist.
”