MOVING TOWARD A WORLD FREE OF MS WINTER 2016
The Official Magazine of the National MS Society South Central Chapter
WHERE WILL THE NEXT
1993 CHR IS, DIAG NOS ED IN
COME FROM IN MS RESEARCH? p.13 FEATURED ARTICLES 8 • OPENING DOORS TO MS WELLNESS 10 • ADVOCATING FOR A CURE
20 • VOLUNTEER HALL OF FAME
WELCOME
If You or Someone You Know Has MS Studies show that early and ongoing treatment with an FDA-approved therapy can reduce future disease activity and improve quality of life for many people with multiple sclerosis. Talk to your health care professional or contact the National MS Society to learn about ways to help manage multiple sclerosis and about current research that may one day reveal a cure.
LISA MOTHER diagnosed
in 1998
ER IGHT LIFT E W E DAV diagnose
d in 1974
People with MS can live their best lives as we STOP MS in its tracks, RESTORE what has been lost and END MS forever.
NationalMSSociety.org
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
CONNECT
MS CONNECTION • 800-344-4867 • WINTER 2016
SIGNUP
SHARE
GET CONNECTED: Look for these icons throughout MSConnection Magazine
CHAPTER UPDATE
Together we are stronger M A K I N G A G R E AT E R I M PA C T
T
ogether we are stronger. Together we are making a greater impact on the MS movement and raising awareness of multiple sclerosis and everyone affected by it. Together we are focusing on the challenges of MS today while working to create a world free of MS tomorrow. Together we are raising funds to drive change. However, we know we need to do more until multiple sclerosis is a thing of the past.
Regional Executive Vice President
MARK NEAGLI
Board of Trustees Chairman
WILLIAM BYERLEY Houston, TX Treasurer
DON McCORMACK Houston, TX Secretary
DAVID CARDER
MS Awareness Week is the perfect opportunity for us to give MS a face and a voice, ensuring everyone is seen and heard. You can join the Society in addressing the challenges of living with MS by funding cutting-edge MS research, advocating for change, facilitating professional education, and providing programs and services that help people with MS and their families move their lives forward. You can advertise our many successes through social media channels, host a community event, participate in an MS fundraising event or share your story. You fuel the Society’s impact in the lives of people affected by MS and together we are united by our incredible work. You work tirelessly to leverage community connections and ensure we have the resources we need to achieve the Society’s goals. Every connection counts when it comes to increasing awareness and supporting our cause. Join us for MS Awareness Week and celebrate the impact we are making. Together we are stronger. Thank You,
Mark Neagli ive Regional Execut Vice President
Tulsa, OK
MARCH
7-13 2
0
1
6
SOUTH CENTRAL CHAPTER
ARKANSAS
https://MSarkansas.org @NMSSarkansas
Little Rock 10825 Financial Centre Parkway, Ste. 330 Little Rock, AR | 72211 | 501-663-8104
LOUISIANA https://MSlouisiana.org /MSlouisiana | @NMSSLouisiana Metairie/New Orleans
4613 Fairfield St. Metairie, LA | 70006 | 504-322-3790
NEW MEXICO https://MSnewmexico.org /MSnewmexico | @MSsocietyNM Albuquerque
3540 Pan American Fwy NE, Ste. F Albuquerque, NM | 87107 | 505-243-2792
OKLAHOMA
DAVID HUSBAND & FATHER TEXAS
diagnosed in
19 9 8
https://MStexas.org /NMSStexas @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 Lubbock 3610 22nd St., Ste. 301 Lubbock, TX | 79410 | 888-999-7992
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
MS Navigator 速
800-344-4867, option 1, contactusnmss@nmss.org
MSConnection.org
CONTENTS
WELLNESS
06 OPENING DOORS TO MS WELLNESS
SCOTT #TogetherWeA reStrong diagnosed
er
in 20 03
10
ADVOCACY
ADVOCATING FOR A CURE
I promised Channing, my daughter, I will work unceasingly until there is a day when the letters M S mean Mystery Solved!
WHERE WILL THE NEXT
RESEARCH
13 BREAKTHROUGH
COVER STORY
COME FROM IN MS RESEARCH?
Chris Williamson was diagnosed with MS right on the cusp of breakthroughs in MS research. There were no FDA approved therapies to treat MS at the time of his diagnosis, but later that year the first disease-modifying therapy was approved. Today, Chris and his wife, Gail, are passionate supporters and advocates for MS research, leveraging connections and opportunities to increase funding. “You never know which gift could support the research breakthrough that could end MS,” Chris said. “The more research we fund, the closer we are to a cure.”
20 HONORING OUR VOLUNTEERS
VOLUNTEERS
National MS Society volunteers are critical to the mission and are often the face of the organization to a variety of audiences. MEDICINE
24 MEDICINE
26 BE SEEN: FALL PHOTOS, 2015
30 DIY
BE SEEN
31 CALENDAR Get Connected
5
WELLNESS
OPENING DOORS TO MS WELLNESS I
n addition to being essential to general health and well-being, exercise is helpful in managing many MS symptoms. Exercise can lead to improved strength, better bladder and bowel function, less fatigue and depression, improvement in cognitive function and mood enhancement. Exercise helps individuals living with MS live their best life, but in many communities finding an exercise program that fits the needs and abilities of individuals living with MS can be difficult.
Services Committee, led by members Harold Harris, Lisa Sailor and Susan Newman, realized that wellness opportunities were lacking, they decided to seek a solution. “Many individuals with MS need exercise classes that are adapted for them with instructors that have been specially trained to lead these classes,” said Harold Harris. “We determined we needed a partnership with an organization that has the physical facilities, staff and de sire to help thos e living with MS. Additionally it needed to be af fordable and accessible. The YMCA quickly came to mind.”
“Knowing that these new classes are geared for those like me is exciting! I think these classes will lead to many longtime friendships.”
That proved to be the case in Houston, TX, therefore the Houston Leadership Council decided to do something about it.
Leader ship Council members serve the MS community by sharing their time, expertise, knowledge and connections to accelerate progress and connect people to the solutions they need to live their best lives. Councils are tasked with ensuring the achievement of the Society’s strategic and operational plan by connecting and engaging community individuals, businesses and resources. When the Houston Leadership Council Programs &
6
MS CONNECTION • 800-344-4867 • WINTER 2016
When the Society approached the Greater Houston YMCA in January 2015, the YMCA staff saw that the collaboration between the two organizations could be a great fit. Additional meetings led to the idea of offering adaptive yoga classes exclusive to people living with MS at the Trotter YMCA. The Society secured an opportunity for an instructor from the Trotter YMCA to attend TAYMS (Therapeutic Adaptive Yoga for Multiple
Top: Houston Leadership Council member Harold Harris (left) promotes the new YMCA partnership at Walk MS: Houston. Below: Houston Leadership Council Chair Chris Williamson stopped by to help Lisa Sailor promote the new YMCA wellness offering at Walk MS: Houston.
Sclerosis) Yoga Teacher Training in Fort Worth, TX in August 2015. The workshop, which was offered to yoga instructors from all five South Central states, provided in-depth training on various dimensions of yoga for MS so that instructors could create their own adaptive yoga program. With training secured, the Society and the YMCA moved forward with the partnership. Adaptive MS Yoga classes, exclusive to people living with MS, will begin on January 11, 2016. There will be two offerings weekly, one class offered on Mondays and the other on Saturdays. These adaptive yoga classes will not only be an opportunity to add yoga into the lives of those living with MS, but a great way to connect to others living with MS.
EVERYDAY
MATTERS Put positive psychology to work in your life!
WELLNESS “I am so excited about this partnership between the YMCA and the National MS Society. I have been in a wheelchair for close to 22 years and know first-hand how intimidating a regular exercise class can be for someone who can’t keep up with the class,” said Lisa Sailor. “Knowing that these new classes are geared for those like me is exciting! I think these classes will lead to many longtime friendships.”
New Lab Studies Add Evidence That High Salt Diets Increase Inflammation and May Have Implications for MS Summary • The results from two recently published laboratory studies suggest that high levels of salt shift the balance of the immune system toward inflammation and that salt alters the function of several types of immune cells pertinent to MS. • These two studies, which were both published in the Journal of Clinical Investigation, were led by Dr. David Hafler (Yale University) and Dr. Dominik Müller (Max-Delbruck Center, Berlin, Germany). • Dr. Hafler is funded by the National MS Society to study the impact of high salt on the immune system, and the Yale team is also conducting a pilot clinical trial to explore the impact of high- and low-salt diets on MS disease activity.
8
MS CONNECTION • 800-344-4867 • WINTER 2016
Harris also hopes success of these classes will lead to additional opportunities. “Our long term goals are to spread the yoga classes to other YMCA locations and add adaptive aquatic classes. The YMCA is a great partner, and like us at the National MS Society, they want this program to be successful. Our job is to encourage those living with MS to participate in the classes so that they continue to be offered.”
Background: Eating high levels of salt, which
is part of the typical Western diet, has been linked to heart disease, chronic inflammation and cancer. Recent lab reports have also suggested that dietary salt can speed the development of the immune attack in an MSlike disease in mice and that the mouse disease responds differently to salt depending on the gender and genetic makeup of the mice. One small study in people found a possible link between dietary salt levels and relapses in people with MS, but this study suggested a link, which is not the same as establishing an actual cause. So far, laboratory findings related to the effects of salt have been stronger than the few studies that have been reported in people. Understanding whether high dietary salt is a risk factor for developing MS or for worsening disease activity is an active area of research.
The Studies: Two studies recently published
in the Journal of Clinical Investigation suggest that high dietary salt affects two types of immune cells in a way that increases inflammation, a state that is generally considered harmful in MS. A study by National MS Society-supported researchers at Yale University and Harvard Medical School led by David Hafler, MD, investigated the effects of high salt on regulatory immune cells called “Tregs.” Tregs normally suppress immune responses by other immune cells, but in people with MS Tregs have been shown to be less able to perform this helpful function to turn off attacks. The team showed in mice and in cells
To learn more about the Houston YMCA MS Adaptive Yoga class or other wellness options in your area, call 800-344-4867, option 1 or visit us online: nationalMSsociety.org. Would you like to help expand MS wellness options in your community? Become a Volunteer Wellness Partnership Cultvator. Contact Lissa Giacco at lissa.giacco@nmss.org or 713-394-2928. in lab dishes that high salt blocks the ability of Tregs to suppress potentially harmful immune cells and shifts Tregs toward activity that increases inflammation. The other study, by an international team led by Dominik N. Müller at the Max-Delbruck Center in Berlin, Germany, investigated immune cells called “macrophages.” This study showed that high salt blocks the activation of a subset of macrophages, reducing their ability to suppress inflammatory cells and creating an imbalance in the immune system. In mouse models, high salt diets also delayed wound healing.
Comment: Taken together, these laboratory
studies add new evidence that high levels of dietary salt may increase inflammation and autoimmunity and decrease the ability of regulatory cells and processes to limit harmful immune cell activity. More studies are needed to determine the possible role of a high-salt diet in the risk of developing MS and whether reducing salt intake may be helpful for reducing disease activity in people with MS. Dr. Hafler is funded by the National MS Society to study the impact of high salt on the immune system and the Yale team is also conducting a pilot clinical trial to explore the impact of high- and low-salt diets on MS disease activity. Learn more about dietary factors that may play a role in MS by visiting nationalMSsociety.org/Living-Well-With-MS Learn more about the latest research updates by visiting nationalMSsociety.org/research
D IN 2015; LYNNE
NOSE HAYLEY (L), DIAG
(R), DIAGNOSED
IN 2008
Walk MS helps us team up with friends, loved ones and co-workers to raise funds that drive groundbreaking MS research, provide life-changing programs and guarantee a supportive community for those who need it most. Together, we will end MS forever. REGISTER TODAY! WALKMS.ORG 1-800-344-4867
THANK YOU TO OUR PREMIER NATIONAL SPONSOR
ADVOCACY
ADVOCATING FOR A CURE By Patti Barker, Guest Writer
M
y daughter’s teen years were rudely interrupted when she was diagnosed with MS at the tender age of 16. She took it in stride as part of her life’s plan, and jumped wholeheartedly into volunteer involvement with the National MS Society. I subsequently followed her lead, doing anything and everything that had a Society stamp on it. When we were asked by the National MS Society to join them at our state Capitol as an MS Activist, visions of 60’s-style activism ran through my head. I prided myself on staying up on current affairs, but not being a lawyer nor claiming to intimately know state and federal politics, I politely declined their invitation. However, the staff was persistent, persuading us that we only needed to “tell our story” and the Society would prepare us to discuss the legislative issues at hand. That was nearly nine years ago; and they were right. The most impactful part of being an MS Activist is realizing your story matters to your legislator. It provides a face and a perspective for them to consider when voting on issues that may not otherwise faze them. Being an MS Activist helped me find my niche as a volunteer with the Society, as it defined how I can best contribute to finding and funding a cure and help others who live with MS or who love someone who does. My involvement with MS activism grew from that first day at the state Capitol to becoming the co-chairman of the Oklahoma Government
10
MS CONNECTION • 800-344-4867 • WINTER 2016
Relations Committee. As such, I coordinate recess meetings between our federal legislators, committee members and constituents to discuss Society legislative priorities. In August, two sisters from Stillwater, Oklahoma, Anne Greenwood and Kim Seagraves, agreed to meet with me and their representative, Congressman Frank Lucas. Kim lives with multiple sclerosis, and in her honor, Anne serves on the Society’s Oklahoma Leadership Council. They didn’t hesitate to join me, even though it was the
The most impactful part of being an MS Activist is realizing your story matters to your legislator. first time for both of them to be official activists. I was counting on their perspective as Representative Lucas’s constituents to impact him in a profound way. Our goals were to ask Congressman Lucas to co-sponsor the Advancing Research for Neurological Diseases Act (HR 292), co-sponsor and pass the Ensuring Access to Quality Complex Rehabilitation Technology Act (HR 1516), and pass legislation to raise the spending caps under the Budget Control Act of 2011 that are having
THE ISSUES Top: (Clockwise from top): Patti Barker, Anne Greenwood, Kim Seagraves and Congressman Lucas.
a dramatic effect on government-sponsored research. We followed our plan, engaging him in a conversation around those issues and offering our personal stories of life with MS. Anne was able to connect the congressman with others in his district living with MS, much to his surprise. We witnessed his facial expression change from one of passive politeness to true compassion and concern as Kim talked about her journey and life changes due to her progressing MS. I knew in my heart he was listening. He heard that there are more than 300 MS activist volunteers in his district alone, and that four young people are living with MS on the campus of Oklahoma State University, his alma mater. I sensed some of his internal conflict over his party’s opposition to funding matters and his personal desire to help others like Kim. We left feeling happy and empowered!
On the federal level, our priorities include the Advancing Research for Neurological Diseases Act (HR 292) and the Ensuring Access to Quality Complex Rehabilitation Technology Act (HR 1516). Here’s why they are important:
Advancing Research for Neurological Diseases Act (HR 292) This bill will mandate that the Centers for Disease Control and Prevention track the incidence and prevalence of neurological diseases, including MS. This new data system could one day lead to a cure for diseases like multiple sclerosis, as information collected will provide a foundation for evaluating and understanding aspects of these diseases on which we currently do not have a good grasp – such as the geography of diagnoses, variances in gender, disease burden and changes in healthcare practices among patients. Follow this issue on Twitter: #neurodata
Ensuring Access to Quality Complex Rehabilitation Technology Act (HR 1516)
Learn more about current advocacy priorities at nationalMSsociety.org/Get-Involved/ Advocate-for-Change/Current-Advocacy-Issues
Complex rehabilitation technology (CRT) refers to medically necessary products such as individually configured manual and power wheelchairs, seating and positioning systems and other specialized equipment – that require evaluation, fitting, design, adjustment and programming. CRT is currently included within Medicare’s durable medical equipment (DME) benefit which was created more than 40 years ago to meet the needs of elderly individuals but does not account for the incredible technology advances that promote function and independence for people with significant disabilities. This bill creates a separate benefit category under Medicare for CRT, streamlining access to these individually configured products so that people with significant disabilities including progressed MS can have their medical needs addressed and remain independent.
Follow the latest on Twitter @MSActivist
Follow this issue on Twitter: #complexrehab
I promised Channing, my daughter, I will work unceasingly until there is a day when the letters M S mean Mystery Solved! My insurance to see that day is to continue being an MS Activist. Won’t you join me? Sign up to receive updates and opportunities through the MS Action Network at nationalMSsociety.org/msactivist
20 16
STATE ACTION DAY
BEYOND AWARENESS
NEW MEXICO
OKLAHOMA
LOUISIANA
ARKANSAS
JANUARY
FEBRUARY
APRIL
APRIL
26
10
06
20
*Texas will not have a State Action Day because there is no legislative session this year
COVER STORY
WHERE WILL THE NEXT COME FROM IN MS RESEARCH?
C
hris Williamson was diagnosed with MS right on the cusp of breakthroughs in MS research. There were no FDA approved therapies to treat MS at the time of his diagnosis, but later that year the first diseasemodifying therapy was approved. Since that time, 13 more therapies have been approved, giving new hope to others living with MS. “I’ve lived with MS for 30 years, but I wonder where I would be if these advancements wouldn’t have happened. It is always in the back of my mind,” he said.
“You never know which gift could support the research breakthrough that could end MS,” Chris says.
13
COVER STORY
Above: Chris cutting the ribbon at Walk MS: Houston
“For the first time, MS societies around the globe geography, in order to find the answers the Today, Chris and his wife, Gail, are passionate supporters and advocates for MS research, leveraging connections and opportunities to increase funding. “You never know which gift could support the research breakthrough that could end MS,” Chris said. “The more research we fund, the closer we are to a cure.” It took nearly 10 years after Chris’ diagnosis before he decided he wanted to do something about MS. Chris lived in Los Angeles at the time and connected with the local chapter of the National MS Society through his financial advisor who sat on the chapter’s Board of Trustees. Through this one connection, Gail and Chris soon became active Walk MS participants and Golden Circle members. They learned more about the latest in MS research and were immediately inspired to do more. In January of 2011, Gail and Chris moved to Houston and quickly found opportunities to further their involvement in the MS movement, in particular the Houston Leadership Council. Chris was able to help the council during the early stages, creating guidelines so that everyone understood their role. “One of our
14
MS CONNECTION • 800-344-4867 • WINTER 2016
roles as members is to help provide contacts in the community so we can work toward the goals of the Society,” he explained. Looking to expand their impact with MS research and taking what they learned in Los Angeles, Chris and Gail focused on growing the Houston Golden Circle, which is a group of donors who give $1,000 or more annually. They started by hosting two wine events, one at their home and one at Nice Winery. Through these events, the Williamsons not only deepened engagement among Golden Circle members through Walk MS, but the events also helped set into motion important research donations. Joining the Williamsons at the Nice Winery event were Judi and Jack Johnson, long-time supporters of both the National MS Society and the Texas Medical Center. Following this evening of connecting with others and learning more about the latest in MS research, the Johnsons decided to renew their support. They then met two researchers, Dr. Benjamin Deneen, Associate Professor at Baylor College of Medicine and Dr. Matthew Rasband, Professor and Vivian L. Smith Endowed Chair
in Neuroscience at Baylor College of Medicine, and funded critical projects of theirs through the David & Eula Wintermann Foundation. These Golden Circle events demonstrate how powerful connections among this group can be and are important opportunities to engage others in our mission. “Connections made at these events have the potential to come full circle and make powerful connections that continue to move us closer to a world free of MS,” Chris said. Over the past five years, Chris and Gail have served as NOW Campaign leaders, leveraging all the contacts they have made through
S E D IN 1 9 9 3 C H R IS , D IA G N O
GAIL & CHRIS WILLIAMSON
are funding research together, without considering progressive MS community urgently needs.” the years to help the Society reach the $250 million campaign goal. The largest MS research campaign in history, the NOW campaign seeks to stop MS, restore lost function and end MS forever. Gail became involved with the NOW Campaign because she felt compelled to do something more to support MS research. Gail’s enthusiasm for MS research was noticed on a national level, and she was asked to serve on the NOW Campaign Cabinet, a group of volunteer leaders committed to raising funds and awareness for MS research. She enjoyed gaining a new perspective on the NOW Campaign and served on the Cabinet for one year. She also attended a Peer Review Committee meeting in Washington D.C. where she and Chris saw firsthand the focused efforts of the Society’s MS research investments. “Funding MS research benefits people. So much progress would not have been made without such a concentrated effort. Collaboration is so amazing, especially with less
overlap of projects, and it is so important to give through the Society,” says Gail. “We love to go to Peer Review and see the researchers and doctors who are committed to the Society and people living with MS. And you see a lot of upcoming research; that is what inspires me.” Similar to Gail, Chris also enjoys seeing the inner workings of MS research projects, especially as an engineer. “Being involved with Peer Review motivates me because you see all of the researchers around a table using their heads to make the best research investments possible. The researchers look, evaluate, compare
“Funding MS research benefits people. So much progress would not have been made without such a concentrated effort. Collaboration is so amazing, especially with less overlap of projects, and it is so important to give through the Society,” says Gail. and go over and above to collaborate on a global level.” Through the NOW Campaign, the International Progressive MS Alliance was formed in partnership with MS Societies of Italy, United Kingdom, Netherlands, Canada, France and the MS International Federation. National MS Society’s CEO, Cyndi Zagieboylo, says, “For the first time, MS societies around the globe are funding research together, without considering geography, in order to find the answers the progressive MS community urgently needs.” Gail recently shared the impact of the NOW Campaign with one of her friends whose
walk ms: houston | team breitburn
16
MS CONNECTION • 800-344-4867 • WINTER 2016
daughter was recently diagnosed with MS at the age of 30. Her friend came to her with a lot of questions, and Gail was able to say with assuredness that the most powerful avenue to end MS and find a cure is through MS research. “I felt equipped to give her encouragement and share all of the progress that has been made in just the past five years. It felt great to give her a sense of hope that I so desperately wanted 30 years ago when Chris was diagnosed.” Gail and Chris are so confident in the MS research being funded by the NOW Campaign that they decided to match every dollar up to $20,000 for MS research within South Central Chapter until the end of 2015. Although tremendous strides have been made in recent years, there is still great urgency to find more and better solutions for all people living with MS. That is why Gail and Chris Williamson are urging others to donate to the NOW Campaign and help fulfill the $250 million commitment to accelerate vital research progress and breakthroughs that will change lives and end MS forever. To learn how you can support the NOW Campaign, please go to giving.getconnectedMS.org or contact Jamie Grissom at jamie.grissom@nmss.org or call 713-394-2946.
NOW CAMPAIGN BY THE NUMBERS
MOVING TOWARD A WORLD FREE OF MS
17
RESEARCH
DR. ELLIOT FROHMAN THE BARANCIK PRIZE RECIPIENT FOR INNOVATION IN MS RESEARCH The National MS Society recently awarded Dr. Elliot Frohman of UT Southwestern Medical Center with the 2015 Barancik Prize for Innovation in MS Research, along with Drs. Laura Balcer of New York University Langone Medical Center and Peter Calabresi of John Hopkins University School of Medicine.
T
his winning team of physician-scientists worked together for nearly 10 years to produce novel, groundbreaking and impactful research about the anatomy and biology of the retina and other structures of the eye in people with multiple sclerosis.
validation of the importance of the collaborative work our group is doing in the field of MS and a recognition of a different approach doing scientific research.”
“I believe the collaborative work our group has done across our three centers, now expanding into 35 centers around the world, recognizes an iconic moment in science....”
“Fundamentally, science has been principally driven by competition,” said Dr. Frohman, who direc t s the Multiple Sclerosis and Neuroimmunolog y Program at UT Southwestern. “I believe the collaborative work our group has done across our three centers, now expanding into 35 centers around the world, recognizes an iconic moment in science. The winning of the Barancik Prize, I believe, is a
18
MS CONNECTION • 800-344-4867 • WINTER 2016
In their more than 50 publications, the team has “written the book” when it comes to applying optical coherence tomography (OCT), a common and easyto-use eye scanning technique, to study MS. Thanks in large part to the team’s efforts, OCT has transitioned from a tool for ophthalmologists who treat glaucoma patients to a mainstream method used to study disease mechanisms underlying MS. This trio of researchers leading the International MS Visual Consortium has established OCT as an
accessible and critical tool in patient care and clinical trials, thereby developing a new assay of disease pathogenesis. Numerous trials of potential disease-modifying therapies now incorporate OCT measurement into outcomes, and ongoing and new studies of novel neuroprotection agents have highlighted the use of OCT as a robust “surrogate” or indirect measure of nerve fiber health and damage. “We’re thrilled to present the 2015 Barancik Prize to Drs. Frohman, Balcer, and Calabresi,” said Dr. Timothy Coetzee, Chief Advocacy, Services, and Research Officer at the National MS Society. “This team has used innovative research on the eye to open up a window to brain health and damage, making it possible to apply widely available tools to track clinical care and clinical trial outcomes in people with MS, while offering novel insights into pathology of the disease.” Dr. Frohman has published over 250 peerreviewed articles, book chapters, and
monographs, and serves as a principal investigator on a number of MS clinical trials. He also serves as a reviewer for numerous journals in the field of neurology. The Barancik Prize for Innovation in MS Research seeks to recognize and encourage exceptional innovation and originality in scientific research relevant to multiple sclerosis, with emphasis on impact and potential of the research to lead to pathways for the treatment and cure for MS, and scientific accomplishments that merit recognition as a future leader in MS research. The international prize is made possible by the generosity of the Charles and Margery Barancik SO Foundation, and is administered through the National Multiple Sclerosis Society. Read more about promising research at nationalMSsociety.org/research.
VOLUNTEERS
HONORING OUR VOLUNTEERS
LIFETIME ACHIEVEMENT AND VOLUNTEER HALL OF FAME
National MS Society volunteers are critical to the mission and are often the face of the organization to a variety of audiences. This year, at the Society Leadership Conference held in Fort Worth, Texas, 10 South Central Chapter volunteers were inducted into the Society’s Volunteer Hall of Fame, including Dr. Austin Sumner who was honored for Lifetime Achievement (35 years or more of service). Congratulations to all of these individuals for changing the world for people affected by MS!
Dr. Austin Sumner
Dr. Austin Sumner |
LIFETIME ACHIEVEMENT AWARD
Dr. Austin Sumner is the Louisiana State University Department Head of Neurology. He began partnering with the Society in 1986. His leadership roles include serving as a member of both the Louisiana Chapter Board and South Central Board of Trustees, holding the positions of Chair, Vice Chair and Governance Chair. He has also engaged as a member of the Healthcare Advisory Committee, Special Committee on the Reserve Allocation Process and Louisiana Leadership Council.
Teresa Wynne | ADVOCACY After being diagnosed in 2003, Teresa began devoting her time, energy and considerable skills to the National MS Society’s advocacy efforts. As a dedicated MS Activist for nearly a decade, Teresa has worked to create affordable access to health insurance, advocated for Medicaid Expansion and increased transparency in health insurance and much more. Teresa is a leader in many areas of the Society serving as a District Activist Leader, Self-Help Group leader, Walk MS participant, and member of the Texas Government Relations Committee and State Activism Advisory Council.
Gary Pitts |
20
FUNDING THE MISSION
Gary learned about MS in 2002 when a co-worker approached him about donating to a Walk MS event and soon after a bike event called (then) the MS 150 Cactus & Crude ride. Learning more about the 150-mile bike ride to raise money for the MS Society, Gary said, “I can do that” . . . and did he ever! Gary completed his first bike event that July, fundraising just over $1,000. Thirteen years later, Gary has participated in approximately 25 rides with a lifetime fundraising total of $348,251, and has made many friends living with MS.
MS CONNECTION • 800-344-4867 • WINTER 2016
Dr. Jesus Lovera
TERESA WYNNE
Don McCormack |
GARY PITTS
FUNDING THE MISSION
Don McCormack is a veteran cyclist, fundraiser, mentor, Board member and friend with lifetime fundraising in excess of $318,000 from 21 consecutive years in the BP MS 150 Houston to Austin ride and several Bike MS: Cactus and Crude rides. Don currently serves on the South Central Board of Trustees as Treasurer and Finance Committee Chair. Together with his wife, Joy, who serves on the Club 300 Committee and the On the Move Luncheon Committee, they host an annual “Crush Out MS” party at their home packed with friends and family.
Ernest Johnson |
FUNDING THE MISSION
In 2006, when someone close to him was diagnosed with MS, Ernest registered for the BP MS 150. New to cycling, he joined the Houstonian Club Hammerheads team for guidance and support. Since joining, he has consistently been among the team’s top fundraisers with cumulative fundraising exceeding $376,000. From 2008 to 2014, he provided charismatic leadership through On the Move Luncheons, the NOW Campaign, Walk MS and the Board of Trustees through Governance, SCRAP committee, Donor Development, Golden Circle Workgroup and as Board Chair. He also served on the Society’s Charting Our Future Task Force in 2008.
Dr. Jesus Lovera, Neurologist |
HEALTH PROFESSIONAL
Dr. Jesus Lovera is the Assistant Professor of Neurology at Louisiana State University in New Orleans and Co-Director of the LSU Multiple Sclerosis Clinic. Since 2007, Dr. Lovera has been a member of the Healthcare Advisory Committee and has served as co-leader of the Access to Care Committee since 2011. His volunteer efforts include informing the healthcare community and medical students of the Society’s volunteer programs and fellowship opportunities. He is a dedicated partner in determining gaps in access to care and driving solutions through collaboration and in 2013, the Society named Dr. Lovera and the LSU MS Clinic official Partners in MS Care.
21
Don MC CORMACK karen Swartz
Nancy monso
n, ph.d
Amy Thiessen | PHYSICAL THERAPIST AND CERTIFIED CLINICAL SPECIALIST Amy specializes in Neurologic Physical Therapy at the MS Center of Excellence at the Oklahoma Medical Research Foundation (OMRF). Her effort to educate and train other healthcare professionals and students has made a significant impact on the quality of care provided to those living with MS. Since becoming involved with the MS Society in 2006, she has been a leader in creating innovative programs for healthcare professionals and for patients, such as a tele-rehab pilot project at OMRF in collaboration with the Society.
Barbara Leonard |
PROGRAMS & SERVICES
Barbara Leonard has served as co-leader of the Access to Care Committee since 2011, leading Society initiatives and serving as a spokesperson in the community. She also serves as the Community Health Relations (CHR) Program Manager, working with healthcare professionals to connect their practice and patients with the Society and educating other volunteers to engage in outreach. Barbara has developed County Plans, which include the names of healthcare providers in underserved areas and serve as roadmaps for the volunteers as they work to make connections in their area.
Karen Swartz |
PROGRAMS & SERVICES
Diagnosed in 1996, Karen Swartz’ trip to the Mayo Clinic in 2008 was the catalyst she needed to get involved with the MS Society. Karen found her volunteer calling after joining Chicago’s Deliver-a-Smile team delivering gift baskets to people living in long-term care facilities. After moving to Texas, she led the charge in implementing the program there. Karen also leads a Walk MS team and is an avid activist for people living with MS. She serves on the Texas Government Relations Committee and as a District Activist Leader.
Nancy Monson, PH.D. | SCIENTIFIC RESEARCHER
22
Dr. Nancy Monson is an Associate Professor of Neurology and Neurotherapeautics and Associate Professor of Immunology at UT Southwestern Medical Center. Nancy’s expertise has brought new tools into the clinical setting that have resulted in a test currently in clinical trials in which a patient’s antibody genes can reveal whether they will develop MS in the future. Nancy has served on Peer Review committees and advisory committees. She also speaks at events across South Central and is a Dallas Walk MS team captain.
Amy Thiessen Learn more about volunteering by visiting volunteerMS.org
BARBARA LEONARD
MOVING TOWARD A WORLD FREE OF MS
23
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 National MS Society is proud to announce the following new Partner in MS Care:
Dr. Ariel Antezana Dr. Ariel Antezana was born in Cochabamba, Bolivia and earned his medical degree from Universidad Mayor de San Simon in his native Bolivia. He completed residency in internal medicine at Caja Nacional de Salud and finished his internship and neurology residency at SUNY Downstate in Brooklyn, New York. He performed a one year fellowship in multiple sclerosis and neuroimmunology at the NYU School of Medicine Multiple Sclerosis Center in New York, New York. Currently he is an attending physician at Neuromedical Clinic of Central Louisiana and is affiliated to Christus Cabrini Hospital and Rapides Regional Medical Center. Dr. Antezana’s passion is patient care and investigation. He has several publications and is currently involved in research studies related to multiple sclerosis and stroke. Outside of the medical arena he enjoys spending time with his family and playing sports.
Finding the right provider and learning to advocate for the care you need is important.
24
MS CONNECTION • 800-344-4867 • WINTER 2016
To learn more about Partners in MS Care in your area, please visit nationalMSsociety.org or call 800-344-4867, option 1.
BE A HERO
REGISTER TODAY › BIKEMS.ORG THANK YOU TO OUR PREMIER NATIONAL SPONSORS
On your tax return… make your mark to help create a world free of MS.
JOE (CENTER) DIAGNOSED IN 2010.
This year, people in Louisiana and Oklahoma can make a mark to create a world free of MS.
On your tax return…
If you or someone you know has been affected by MS, This year, people in Louisiana and Oklahoma can make a you are not alone. Take this to youratax preparer, mark toadcreate world freeorofcontact MS. the National Multiple Sclerosis Society for more information. While doing your 2014 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, programsyour and services thousands individuals with MS. A small mark will make a big difference make markthat to support help create a of world freeliving of MS. in the movement toward a world free of MS.
nationalMSsociety.org | 1.800.344.4867 While doing your 2015 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.
Contact the National MS Society to speak to an MS Navigator for resources on living with MS, upcoming programs, counseling and more. We provide services for anyone wanting to learn more about MS and the daily challenges of living with MS, including individuals, care partners, friends and family members.
nationalMSsociety.org | 1.800.344.4867
800-344-4867, option 1 | msconnection.org
BE SEEN
MuckFest MS Houston MuckFest MS Houston
Houston Public Media’s Ernie Manouse and friends got mucky for MS at the first ever MuckFest MS: Houston in November!
These filthy fundraisers got dirty for MS - thank you! Courtesy of Gameface Media.
SOUTH CENTR AL CHAPTER
Fall Photos 2015
Despite rainy fall weather, Walk MS was still held in four Texas cities this past fall, including Killeen, Waco, Houston and Kemah. Each year, 330,000 individuals participate in Walk MS events across the country, making connections and raising money that brings us closer to ending MS. We’re stronger together!
26
Bike MS: The Road Divided
walk ms: waco MS CONNECTION • 800-344-4867 • WINTER 2016
BIKE MS: VALERO RIDE TO THE RIVER Bike MS: Valero Ride to the River presented by H-E-B Best Dressed Team sported Lederhosen in New Braunfels!
THE RIVER BIKE MS: VALERO RIDE TO Bike MS: Valero Ride to the River presented by H-E-B “I Ride with MS” is a special National MS Society program sponsored by MS One to One Genzyme and Primal that celebrates Bike MS cyclists who are also living with MS.
Bike MS: The Road Divided Bike MS: The Road Divided presented by Sam’s Club Top Fundraising Team, Team RICARDOS, taking off for MS from the new Day 1 Start Line in Norman. (Above-Right) Elda Jones, an I Ride with MS cyclist, triumphantly crossed the new Day 2 Finish Line in Stillwater, home of the Oklahoma State University.
Bike MS: Dat’s How W e Roll Bike MS: Dat’s How We Roll presented by Peoples Health Erin Hall and her husband, Wesley, before the start on Day 1. Erin is an I Ride with MS participant and completed the 75 mile ride. MOVING TOWARD A WORLD FREE OF MS
27
BE SEEN
Leadership conference
leadership conference Volunteers, fundraisers and staff from across the country came to Fort Worth for the Society Leadership Conference on November 5-7 to celebrate our collective impact towards a world free of MS. Presentations included research updates, a dialogue about #WhenYourParentHasMS and much more. Materials can be found at nationalmssociety. org/Get-Involved/Conferences-and-SpecialEvents/2015LeadershipConference/Cool-Stuff.
Family Discovery Camp Families affected by MS got their game on at this year’s Family Discovery Camp, October 2-4 at Camp For All. The annual program brings families together to meet others in the MS community and enjoy recreational programs in an accessible environment.
28
MS CONNECTION • 800-344-4867 • WINTER 2016
EVERYDAY MATTERS This past fall, Las Cruces hosted the 5-week Everyday Matters program, featuring presentations by Dr. Celinda Levy to help participants put positive psychology to work in living their best life with MS.
golden Circle South Central Board of Trustees, Laura Vaccaro and Karen Chesney Miles, pose with Bill Klesse and Dr. Doug Landsman, Associate Vice President of Biomedical Research for the Society, at a Golden Circle event in San Antonio on Thursday, September 17. Taking place at Club Giraud in San Antonio, this exclusive event raised funds for Progressive MS research.
Dallas on the move Co-Chairs Paula and Orrin Harrison (on the right) alongside their daughter, Lindsey Frattarelli, and her husband, Marco, raised support at the 2015 Dallas On the Move Luncheon featuring Keynote Speaker and Emmy Award Winner Jason DaSilva.
uncorking the cure The 2015 Uncorking the Cure for MS on October 15 had a honky-tonk flair this year. Cindy Cain and the Red Hot Pokers performed at the legendary Cain’s Ballroom in Tulsa. Toasting Tulsa Honoree Ken Busby poses with Cindy Cain and Host Committee member, Steve Wright, at the event’s photo booth.
vintage affair
Little Rock’s A Vintage Affair for MS presented by Steve Landers Auto Group on September 17 took on new meaning with Steve Landers, Sr., receiving the MS Hope Award and Garver receiving the inaugural Philanthropic Business of the Year Award. Pictured is Steve Landers, Sr.(left), accepting the MS Hope Award from Shane Broadway(right), Event Committee Co-Chair. 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.
SOUTHERN SMOKE RAISES FUNDS IN A TASTY WAY When James Beard Award-winning chef Chris Shepherd learned that his friend and local sommelier, Antonio Gianola, had been diagnosed with MS, his reaction was to “throw a huge party and raise a ton of money.” When your passion is food, your Do It Yourself Fundraising gets creative and tasty. Shepherd, owner of Underbelly restaurant in Houston, decided to pull together an all-star lineup of acclaimed chefs to raise funds and awareness of
“throw a huge party and raise a ton of money.” multiple sclerosis. The result was the inaugural Southern Smoke barbeque event, held October 11 in Houston, TX. Shepherd brought together James Beard Award winners Aaron Franklin of Austin’s Franklin Barbecue and Sean Brock of McCrady’s, Husk Restaurant and Minero in Charleston, and pit master Rodney Scott from South Carolina to join local celebrated chefs in a massive street party. Southern Smoke, featuring legendary barbeque and cuisine from the chefs as well as wine, beer, live music and a silent auction, raised nearly $184,000 for the National MS Society, which far exceeded the $80,000 they expected to raise.
: Houst DIY Fundraiser
30
on
MS CONNECTION • 800-344-4867• WINTER 2016
Inspired by the success of the event and the community that rallied around it, Shepherd has committed to continuing Southern Smoke so he can do even more for his friend and everyone affected by the disease by stopping MS in its tracks, restoring what has been lost and ending MS forever.
Get Connected
CALENDAR
JANUARY
Top Left: Chris Shepherd and Antonio Gianola presented a check to the Society, far exceeding their initial goal. Regional Executive Vice President, Mark Neagli, accepted the check on behalf of everyone affected by MS. Top Right: Antonio Gianola and Chris Shepherd celebrate SouthernSmoke’s success with Society staff.
1 Offices closed for New Year’s Day 12 Webinar: Your Mind is a Muscle, Too: The Relationship Between Exercise and Cognition | 7 pm CST | nationalMSsociety.org/telelearning 15 2016 Scholarship Application Window Closes | nationalMSsociety.org/scholarship 18 Offices closed for Martin Luther King Day 26 2016 New Mexico State Action Day | MSnewmexico.org
FEBRUARY 9 Webinar: Navigating Career Change: Working with MS is Possible! | 7 pm CST | nationalMSsociety.org/telelearning 10 2016 Oklahoma State Action Day | MSoklahoma.org 15 Offices closed for President’s Day 23 Webinar: Managing Your MS Symptoms with Technology | 7 pm CST | nationalMSsociety.org/telelearning 24 On the Move Luncheon | Baton Rouge, LA | MSonthemoveluncheon.org
MARCH 7-13 MS Awareness Week | nationalMSsociety.org 11-13 Champ Camp | Burton, TX | MStexas.org 12 Walk MS: San Antonio | San Antonio, TX | walkMS.org Spreading M S awareness at the Socie ty boo Southern Sm th at o ke .
To learn more about Southern Smoke, visit southernsmoke.org. To learn more about DIY Fundraising, visit nationalMSsociety.org/diy
14-16 2016 National Public Policy Conference | nationalMSsociety.org 15 Webinar: The Complete Guide to Social Security Disability | 7 pm CST | nationalMSsociety.org/telelearning 23 On the Move Luncheon | Houston, TX | onthemovetx.org Connect with the information, resources and individuals you need to live your best life. To learn more, contact an MS Navigator at 800-344-4867 or visit nationalMSsociety.org. Sign up to receive Society emails at nationalMSsociety.org/signup to stay updated and connected.
31
National MS Society | South Central Chapter 8111 North Stadium Drive, Suite 100 Houston, TX 77054
“OUR GREATEST WEAKNESS LIES IN GIVING UP. THE MOST CERTAIN WAY TO SUCCEED IS ALWAYS TO TRY JUST ONE MORE TIME.” THOMAS A. EDISON
MS CONNECTION