Winter 2015 MSConnection: South Central edition

WINTER 2015

M O V I N G T O W A R D A W O R L D F R E E O F M S

Strike Out MS

Livin’ With ItA New Approach to Self-Help Groups

The Road toState Action Day

10 Years of ImpactHouston On The Move

A community connects with one another to make a difference for people living with MS

Arkansas • Louisiana • New Mexico • Oklahoma • Texas

1-800-344-4867NationalMSSociety.org

The National Multiple Sclerosis Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The National Multiple Sclerosis Society assumes no liability for the use of contents of any product or service mentioned.

Information provided by the Society is based upon professional advice, published experience and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. The National Multiple Sclerosis Society recommends that all questions and information be discussed with a personal physician.

We mobilize people and resources to drive research for a cure and to address the challenges of everyone affected by MS.

Board of Trustees ChairmanERNEST JOHNSON

HOUSTON, TEXAS

TreasurerDON McCORMACK

HOUSTON, TEXAS

SecretaryDAVID CARDERTULSA, OKLAHOMA

Regional Executive Vice PresidentMARK NEAGLI

If You or SomeoneYou Know Has MS

Studies show that early and

ongoing treatment with an

FDA-approved therapy can

reduce future disease activity

and improve quality of life for

many people with multiple

sclerosis. Talk to your health

care professional or contact

the National MS Society at

nationalMSsociety.org or

1-800-344-4867 to learn

about ways to help manage

multiple sclerosis and about

current research that may one

day reveal a cure.

MS STOPS PEOPLEFROM MOVING

WE EXIST TO MAKE SURE IT DOESN’T. JOIN THE MOVEMENT®

Winter 2015VOLUME 9 • ISSUE 1 ARKANSAS

Little Rock1100 N. University, Ste. 255

Little Rock, AR 72207501-663-8104

LOUISIANAMetairie/New Orleans

4613 Fairfield St.Metairie, LA 70006

504-322-3790

NEW MEXICOAlbuquerque

3540 Pan American Fwy NE, Ste FAlbuquerque, NM 87107

505-243-2792

OKLAHOMAOklahoma City

730 W. Wilshire Blvd., Ste. 103Oklahoma City, OK 73116

405-488-1300

Tulsa4606 East 67th St., Ste. 103

Tulsa, OK 74136918-488-0882

TEXASAmarillo

3350 Olsen Blvd., Ste. 1700Amarillo, TX 79109

Phone: 806-468-8005

Austin9600 N. Mopac, Ste. 150

Austin, TX 78759512-340-2700

Houston8111 N. Stadium Drive, Ste. 100

Houston, TX 77054713-394-2900

Lubbock3610 22nd St., Ste. 301

Lubbock, TX 79410888-999-7992

Midland1031 Andrews Highway, Ste. 201

Midland, TX 79701432-522-2143

North Texas2105 Luna Road, Ste. 390

Carrollton, TX 75006469-619-4700

San Antonio9830 Colonnade Blvd., Ste. 130

San Antonio, TX 78230210-694-3200

South CentralOffices

Football season came and went but the Society is still in full force, invigorated and working as a team to create a world free of multiple sclerosis. Team Society will be the world champion, taking on MS and fighting year-round for as long as it takes to end MS once and for all. This past November the 2014 Society Leadership Conference in Fort Worth, Texas hosted hundreds of outstanding volunteers and Society staff leaders from across the country to celebrate, motivate, inspire, learn, share, network and reenergize to maximize our individual and collective

impact. We came together to share our playbooks and build our offense against the disease. We are united in our collective power to do something about MS now and end this disease forever. We act with urgency to find solutions and change the world for people with MS. Another way we put the MS movement at the forefront is MS Awareness Week, which brings a face and a voice to MS. Not one person is defined by MS but we are defining the playing field with programs and services to help people with MS live their best lives NOW and funding promising research from the most brilliant minds. Traditionally, the Society’s awareness efforts have been a combination of broad-based awareness with the general public and more focused and tailored outreach to specific audiences. In 2015, we are intentionally targeting our efforts, focusing on initiating and increasing the engagement of those people who already have a connection to MS and the movement through “actionable awareness.” Our goal with actionable awareness is to provide easy ways to take action within the MS movement and to focus on people who most likely will take action – those who are already a part of the MS movement and those who already have a connection to MS– and to create deeper and long-term relationships while increasing connections, engagement, influence and impact that will move us forward. We are at a pivotal moment in time where significant progress is being made and breakthrough solutions can change the world for everyone with MS. Finding solutions for people with MS is our highest priority and research is essential to finding solutions that change lives. We will fuel research through increased investments – a record-breaking $50 million in 2014 – to stop the disease in its tracks, restore function and end MS forever. Our approach is comprehensive and focused, and we collaborate worldwide. We pursue all promising paths to uncover solutions for everyone with MS, while focusing on three priority areas: Progressive MS, nervous system repair, including myelin repair, and wellness and lifestyle. We have made great strides; just five years ago nervous system repair was seen as unachievable! Every connection counts when it comes to increasing awareness and support of our cause. Every individual we connect with personally, every letter we write to an elected official, every person in our social media network, every poster we put up, every dollar we raise, every video viewed, every story told — each connection has the opportunity to change the world for people affected by MS. You can create connections stronger than the ones MS destroys. Join the movement and fuel impact to help others learn more about MS and what they can do to make a difference. Stay focused and fight.

Mark NeagliRegional Executive Vice PresidentSouth Central Region

A Message from the Regional Executive VP...

GET CONNECTED

The connections we make are stronger than the connections MS can destroy. Get connected with the MS community through events, peer support, wellness, volunteer opportunities and advocacy. For questions about any of the items on our calendar, or to learn about self-help groups and wellness classes, call 1-800-344-4867 or visit nationalMSsociety.org.

JANUARY10 Get Connected: San Antonio, Living Well

With MS, featuring Dr. Alexa Stuifbergen

12-24 Online Voting Open for

the Board of Trustees slate

13 Can Do MS Webinar:

Get Motivated to Get Organized

15 Make Your Mark Day:

Dallas, Houston, San Antonio

15 Deadline to apply for the

MS College Scholarship Program

20 Telelearning: MS Research -

Your Questions Answered

22 Telelearning: MS Research –

Your Questions Answered

28 New Mexico State Action Day

Santa Fe, NM

29 2015 Annual Meeting, featuring

guest speaker Dr. Bruce Bebo

CalendarMS

FEBRUARY10 Texas State Action Day, Austin, TX11 Oklahoma State Action Day, Oklahoma City, OK12 Telelearning: MS and Employment – Legal Basics: Know Your Rights19 Make Your Mark Day: Dallas, Houston, San Antonio24 On The Move Luncheon, Baton Rouge, LA25 Arkansas State Action Day, Little Rock, AR26 Telelearning: MS and Employment – Managing Cognitive Symptoms and Fatigue in the Workplace28 Strike Out MS, Broken Arrow, OK

2-9 MS AWARENESS WEEK

7 Walk MS: San Antonio, TX

11 On The Move Luncheon, Houston, TX

12 Telelearning: MS and Employment –

Supports to Help Your Find Employment

13-15 Champ Camp, Burton, TX

14 Walk MS: Corpus Christi, TX

17 Telelearning: Managing MS Bladder

and Bowel Symptoms

19 Make Your Mark Day:

Dallas, Houston, San Antonio

19 Telelearning: Managing MS Bladder

and Bowel Symptoms

21 Walk MS: New Orleans, LA

26 Telelearning: MS and Employment – The

Essential Guide to Flexible and Home-Based Jobs

28 Walk MS: Amarillo, TX

Walk MS: El Paso, TX

Walk MS: Fort Worth, TX

MARCH

MSConnection • WINTER 20154

1.855.372.1331 | WalkMS.org

LeadersVO L U N T E E R

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. Thank you to our Leaders for all the work you are doing tohelp create a world free of MS!

Katherine loves to stay busy and productive. While looking for something to do on a pretty spring Sunday

in 2002, she stumbled upon Walk MS, then

held at University Park in Dallas. Volunteering at the

event became an annual activity until 2007 when 3 different people she knew were diagnosed with MS. All of the sudden, MS became very real to Katherine and she knew she had to do something more. After attending a volunteer orientation to learn about all the different ways she could help further our mission, Katherine began taking on more and more volunteer roles. Twelve years later, her

volunteer roles now include managing the North Texas MS Ambassador program, serving as an Event Area Lead for Walk MS and Bike MS events, meeting with state representatives to further advocacy efforts, co-facilitating staff education sessions around Engaging and Embracing Volunteers, reviewing and rating scholarship applications as a member of the Scholarship Review Panel, and leading a team of volunteers to assist people living with MS with home maintenance. Her commitment and reliability equal that of her hero, Dr. Suess’ Horton from Horton Hears a Who; “I said what I meant and I meant what I said.” Katherine displays that same type of determination in her volunteer w ork with the Society, holding herself, her staff partners and fellow volunteers to Horton’s level of commitment.

in theMovement

Katherine Price


Ed St. JohnEd began volunteering with the National MS Society in the mid 1980’s.

His wife, Sue, was a staff member and as often

happens with spouses, Ed found himself pressed into service.

Bike MS events became Ed’s big focus, and soon he found himself supporting the events throughout Texas and Oklahoma. He quickly became a friendly, familiar face across the region; one that staff could count on to do whatever needed to be done to ensure the safety and success of the events. For many years, Ed served on the North Texas Bike MS steering committee leading the team on logistics. He also served as the point person for the overnight sites for Bike MS events in North Texas and San Antonio (alongside his son-in-law, Nick Daines), and assisted with the Houston to Austin ride for more than 10 years. In each case, Ed showed up the week prior to the event and handled everything from site layout to deliveries to setting up hydration stations, ensuring each and

every site was safe and prepared for the cyclists’ arrival. In 2004, inspired by Ed’s commitment and efforts, the North Texas staff developed a volunteer award in his name and presented it to him at the Bike awards party. Each year, staff continue to select a volunteer that embodies the vision, initiative and energy Ed brought to his work with the Society. This award has and will continue to serve as a constant reminder of Ed’s genuine efforts to make every event as successful as possible. In 2014, Ed St. John passed away after a battle with cancer. Staff and leadership volunteers alike are inspired by the impact Ed made throughout the years. He never tired of helping others and was passionate and driven to do more - make a bigger impact, a larger impression. His leadership allowed event volunteers and fundraisers to raise the much-needed funds for research and programs to help people with MS live their best lives while he took care of the details. His endless energy was inspirational and contagious and he will be greatly missed.

MOVING TOWARD A WORLD FREE OF MS 7

S U P P O R T

Given the success of National MS Society self-help groups and the immense desire to connect

those living with MS, Lynn Cox developed the idea to establish a unique, yet organic, approach to the traditional self-help group concept. Cox, a native of San Antonio, was diagnosed with multiple sclerosis in 2003 at the age of 25 and now serves as an MS Activist. While the diagnosis came as a surprise to Cox and her family, she chose to commit to living her best life despite uncertainty and potential setbacks due to the disease. Shortly after her diagnosis, Cox began attending various self-help groups in search of answers and in hopes of connecting with others like her. After searching 11 years for a self-help group to which she felt the right connection, Cox

made the decision to move her vision forward: create a self-help group aimed at connecting those newly diagnosed and those who have lived with MS for years

in a vibrant, safe and fun environment that focuses on the importance of living one’s best life. “There’s so much growth that comes from making the decision to keep on living life to the fullest, despite the diagnosis,” stated Cox. “I want this group to be a representation of the happiness that comes from moving forward with a positive outlook.” With support from local National MS Society staff and Walk MS

committee members, Cox began to transform her vision into a reality. In an effort to measure initial interest, she held her first event called Livin’ With It in February 2014 with the goal of connecting people living with MS

Livin’ With It: A New Approach to Self-Help Groups

For years, self-help groups have brought people together who share common life experiences for support, education and mutual aid. These group interactions have allowed many individuals living with MS to learn new information and strategies for confronting problems, finding support from others, and embracing the opportunity to help others. These meetings have proven to leave participants feeling empowered and more self-confident in coping with challenges. Furthermore, members of self-help groups share a belief that positive personal change happens through individual efforts with the support of others

by Breann Morris, Staff Member


who had never been involved in the Society, or were not connected to others living with the disease. The event was open to the public, and a neurologist and MS researcher attended to address questions related to multiple sclerosis. The event was a success with more than 75 people in attendance. In an effort to continue the success and gain additional interest in the MS community, Cox decided to connect with others at Walk MS: San Antonio where the Livin’ With It Lounge was created in 2014. With the support of sponsors and donations, the lounge was equipped with food and beverages, seating, television sets and VIP treatment including a rolled out orange carpet for those living with MS. Individuals visiting the lounge were provided information and resources about the National MS Society’s programs and services that can help them take the necessary steps to live their best lives. With momentum and interest growing, Cox elevated the Livin’ With It idea and arranged monthly self-help gatherings where those living with MS and their loved ones could connect with others in a warm and welcoming environment. Nathan Akel recently started attending the group events in search of support and he describes it as being “Focused around real life challenges that care partners and those living with MS face, providing the opportunity to share information and solutions in an effort to help those impacted continue living his or her best life.” With the purpose of encouraging one another to continue living life to the fullest and connecting with others to maintain a healthy perspective, the Livin’ With It self-help group members plan to participate in wellness and exercise activities through the National MS Society such as yoga. Cox hopes this new approach to self-help groups will continue to expand, offering individuals at various locations and numerous stages of diagnosis the opportunity to connect with others so they can feel confident and strong as they face the disease each day.

C O V E R S T O R Y

by Laura Johnson, Staff Member

A CommunityTakes Aim

StrikeOut MS

to

One story can inspire a community, creating awareness

and connections that bring us closer to a world free of multiple sclerosis. That’s the power behind MS Awareness Week. Families and communities across the country participate in MS Awareness Week each year, sharing their stories, creating events, raising funds and speaking up so that others know they are not alone. What might start as a small gathering can turn into lifelong connections and year-round awareness efforts.


MS Awareness Week will take place this year March 2-8, 2015. Everyone impacted by MS has a story to share. Share your story and connect with your community. You never know where it might lead.

Right Off the Bat When it comes to connecting with others in the community and spreading MS awareness, the Dobson family in Oklahoma has hit it out of the ballpark. With a close connection to multiple sclerosis, this devoted family has come together in a powerful way to make a difference. Prior to becoming a history teacher and head baseball coach for Broken Arrow High School, Shannon Dobson worked as assistant coach for Oral Roberts University’s baseball team. As coach, he recruited his younger brother, Matt, to play baseball for his team right after high school. Upon finishing college and a successful baseball career, Matt decided to follow in his brother’s footsteps and become a teacher and coach for Union Public Schools. The brothers’ shared love for America’s favorite pastime would later connect their family to the community in an unexpected way.

Thrown a Curveball While training for an annual running event, Matt began experiencing difficulties with balance, leading him to visit a physician. Months later in 2000, Matt was diagnosed with secondary-progressive multiple

sclerosis. Shocked by his diagnosis, the Dobson family immediately began learning about the disease and what a life with multiple sclerosis would mean for Matt. As unpredictable and frustrating as multiple sclerosis is, Matt began experiencing some complications. In 2010, Matt became only the 18th person with multiple sclerosis in the country to develop PML (progressive multifocal leukoencephalopathy),

a deadly brain disease caused by a virus infection that targets myelin producing cells. Matt was sent to a Dallas hospital for an experimental treatment of PML where he remained for several months. “At that time, it was pretty tough…Matt really started declining and was lucky to get out of it,” admits Shannon. Despite the

devastating survival rate for PML, Matt’s determination and positive attitude helped him to overcome this life-changing ordeal. “I can’t tell you enough about my parents and how much they are there for Matt and all of us.” Reflecting on their strong family bond, Shannon admits, “We couldn’t ask for better parents.”

Covering All the Bases Because of his rigorous battle with PML, Matt was forced to end

his teaching and coaching career and had to focus strictly on his health. With everything his brother had gone through, Shannon was ready to make a difference however he could. “I wanted to help Matt, but I didn’t know what I could do,” says Shannon. He reached out to the National MS Society staff in Oklahoma to see what options were available and the necessary next steps. Although the family was already participating in Bike MS and Walk MS events, Shannon longed to further their impact on MS and engage their community in a fun and meaningful way. Shannon began brainstorming and landed on an idea to leverage a favorite pastime he shared with Matt: baseball. It was only fitting that he would create an

event based on his passion for the game and the love of his younger brother. Shannon’s idea would become a community baseball game known as “Strike Out MS.” He would combine this all-American game with the enthusiasm of his community to raise awareness and funds for multiple sclerosis. Shannon’s goal was to educate

Matt Dobson and Broken Arrow High School’s Assistant Principle Dru Dixon attend the firstStrike Out MS.


their community about MS, including his own high school baseball players. “We are always looking for ways to get our baseball team involved in the community,” says Shannon. It wasn’t hard to get other coaches and players on board. “The players weren’t really aware of MS, but they were familiar with it because of Matt.” Their respect and admiration for individuals living with MS, including Matt, inspired them to step up to the plate and make an impact.

Stepping Up to the Plate Because of the Dobson’s openness with their connection to multiple sclerosis, the family was able to engage others connected to the disease. Community members began stepping forward to get involved and share their own connection to the event and multiple sclerosis. One such connection was Broken Arrow High School’s assistant principle, Dru Dixon, who had recently been diagnosed after experiencing a year of symptoms. Dru had worked with Shannon for several years, and attributes the Dobson family for expanding his

knowledge on the disease and how to live his best life. “I have spent more time with Matt and his family, who have an extensive knowledge of MS,” says Dru. Surrounding himself with positive and reassuring people has been extremely helpful to him, “especially when first being diagnosed with MS.” Similar to others living with this unpredictable disease, Dru believes that living with MS affects him in different ways. “You definitely pay more attention to how you feel. You learn to push yourself, even when you feel tired.” Dru recognizes the benefits of Strike Out MS and how it impacts others affected by this disease. “It is about awareness of MS,” says Dru. “Connections are made through events like this.” For Dru, connections such as these are critical for people to come together who might otherwise have never met. It brings individuals affected by this disease a sense of belonging and acceptance.

Play Ball! In February 2013, the first annual Strike Out MS kicked off as Matt

and Dru threw the first pitch. The event brought together four area high schools who stepped up to the plate for a world free of MS. Families, friends, students and volunteers rallied together from each of the four rivaling high schools to cheer on their teams and support people affected by multiple sclerosis. As a free-admission family event, Strike Out MS hoped to raise funds, but focused on their main goal: to raise awareness of the disease throughout their community. The first annual event featured baseball as the main attraction with food, a raffle and activities for children such as face painting and inflatable games. Parents, students and community members volunteered their time to ensure a successful and fun event. “The teams were really looking forward to the event,” says Shannon. They created Strike Out MS T-shirts, and all pitched in to make it an exciting event for their community to get involved for a great cause. The event focused on raising awareness and funds for multiple sclerosis while bringing the community together for the perfect combination of food, friends and baseball.


The Grand Slam On March 1, 2014, the second annual Strike Out MS commenced with the Dobson family’s enduring effort to raise funds and awareness for MS. After learning from experiences of their first event, Shannon identified the perfect recipe for success to have only two teams battle it out: Broken Arrow and their local rival, Union High School. Leveraging Matt’s connections at Union, Shannon was able to secure a series of baseball scrimmages against the high school’s freshman, JV and Varsity teams. The teams would play ball in a fun and lighthearted event with a unified goal to raise funds and awareness for MS. A crowd of nearly 250 spectators cheered on the schools as they enjoyed an afternoon playing baseball while making an impact. With free admission available again this year, the teams still hoped to raise funds to benefit the National

MS Society and decided to accept donations at the entrance. After tallying up individual profits from raffle tickets, T-shirt sales and personal donations, the 2014 Strike Out MS raised more than $1,500 to benefit awareness and research for a cure. With nearly twice as many personal donations collected throughout the event, the Broken Arrow High School Tigers were crowned champions of Strike Out MS for raising the most money for the cause.

A Brand New Ballgame Scheduled for Feb. 28, 2015, the third annual Strike Out MS will once again connect Broken Arrow High School and Union High School baseball teams as they batter up for a world free of multiple sclerosis. As the Dobson family’s annual event continues to grow, so do the connections made within the community and others affected by this disease. This family’s

determination to make an impact is a testament to the bond they share and their commitment to the MS cause. As Matt, Dru and many others living with multiple sclerosis can relate, connecting with others and developing a strong support system is crucial to living your best life. For the Dobson family, Strike Out MS means more than just a fundraising event, it is a community connecting with one another to spread awareness and making a difference for people living with MS.


10 YEARS OF IMPACT:

Every person touched by MS has their own story. For three women, their stories intersect at the Houston On the Move Luncheon. This year is the 10th Annual Houston On the Move Luncheon, and to commemorate this event that has helped raise more than one million dollars, we are celebrating 2015 Person On the Move Judi Johnson, past Luncheon Chairman Jill Wasserstrom, and current Luncheon Chairman Franelle Rogers, and the impact they have made in the movement toward a world free of MS. Each of these women brings their personal story to the MS movement. Judi Johnson is being honored this year as the 2015 Person On the Move for her years of service to the Society, her continued investment in MS research, and bringing the MS 150 to Houston during her time as Board of Trustees Chair of the Southeast Texas Chapter of the National MS Society. For Judi, the impact of MS is

a personal one, because her brother was diagnosed with MS at the age of 21. “It’s what you do for someone you

love,” she shared when describing her countless hours of fundraising and service to the Society. Judi championed forward progress in the MS movement by leading the Southeast Texas Chapter into a time of stability and innovation. The momentum that Judi Johnson created to find a cure for MS began in the sixties and continued as she was elected Board of Trustees Chair in 1982. Judi was not only able to salvage the chapter from almost going bankrupt, but also was instrumental in bringing an event that would one day shatter fundraising records. The story of the MS 150 begins with fellow Society staff member, John LaRue, visiting local bike shops

and hearing about the need for a large scale bike event in Houston. Judi charged John with figuring out the logistics for the event, and soon after, he had lined up

E V E N T S

On the Move Luncheon

Judi Johnson

by Kristina Kaltenbach, Staff Member


sponsors and volunteers, and coordinated the day-of logistics in just under a year. Judi ultimately urged her board to approve to bring the MS 150 to Houston and as her term ended as Chair, she witnessed the first MS 150 in April of 1985. Now in 2014, the BP MS 150 raises more than 20 million dollars and leads the country as one of the largest and most successful bike rides. Similar to Judi and the impact of the MS 150, Jill Wasserstrom wanted to elevate awareness for MS in her local community. Jill Wasserstrom was diagnosed with MS in 1998 and became involved with the National MS Society through Walk MS. Soon after, she wanted to bring even more awareness to the disease. In 2006, she was at a Society dinner honoring Tilman Fertitta when she was asked to be Chairman of a new fundraising event coming to Houston, the Women Against Multiple Sclerosis Luncheon, now named the On the Move Luncheon. That same night, she was told she only had six weeks to plan and execute the event. Without blinking, Jill pulled together a powerful group of women to be on her event committee. Jill accomplished all that was set out in front of her and for five consecutive years created a Luncheon that tugged at the heart strings of all who attended.

2006• Tysabri approved in U.S. for treating relapsing MS • Long-term Care Caucus convened to create national agenda

to foster spectrum of long-term care options for people with MS

2007• Society and MS International Federation convene a Stem

Cell Research Summit of leading stem cell and MS experts to explore the potential of all types of stem cell research for MS and to set research priorities

• First large-scale trial of sex hormone estriol gets underway in women with MS, a result of the Society’s targeting of gender differences

• With support from Society to International MS Genetics Consortium, two genes are confirmed to be linked to susceptibility to MS; researchers believe many more will be uncovered

• Society launches Fast Forward to speed treatments to people with MS by partnering with industry to develop new drugs

• Society’s Task Force on MS Epidemiology meets to outline future research directions for funding agencies that will further the search for the cause of MS; through its efforts, a disease tracking system is being piloted by the Centers for Disease Control’s ATSDR

2008• Congressional MS Caucus launched to raise awareness and

engage in discussion about access to health care, increase in research funding, disability rights and other MS issues, with members from the House and Senate

• MS activists secure a place for MS research in the $50 million Congressionally Directed Medical Research Program, administered through the Department of Defense, plus $5 million restricted to MS research within the CDMRP

2009 • International task force convened by Society publishes

landmark guidelines on the complex process of telling MS from look-alike disorders (“differential diagnosis”)

• Extavia is approved by the FDA as a new brand of interferon beta-1b • Society holds first-ever Don Tykeson Fellows Conference

to stimulate new research ideas and strengthen the

10 YEARS OF IMPACTSince the launch of the Houston On The Move Luncheon in 2006, there has been tremendous

progress in MS research...

Past Luncheon Chairman Jill Wasserstrom poses with Regional Executive Vice President Mark Neagli.


Increasing people’s awareness of the prevalence of MS, especially in her local community, was a driving force for Jill as Chairman of the Luncheon. “One of the hardest things about multiple sclerosis is that it is hard to see the prevalence of the disease, because you can live with it and no one might know,” explained Jill. She was moved by the friends and family that would show up to support her and other people who were living with MS. “Sometimes you feel like you are by yourself, but when you are surrounded by people who have MS or care about MS, you don’t feel quite as alone.” The connections she made from the Luncheon with people also impacted by MS empowered Jill to continue to do something about MS and not let it define her life. After Jill retired as Chairman of the Luncheon in 2010, Franelle Rogers was brought on as the new On the Move Luncheon Chairman. Franelle’s uncanny ability to connect people to the Society’s mission has expanded the Society’s fundraising reach even more. Through Franelle’s and her committee’s dedication, the Luncheon has sold out each year and this past year raised $158,000. Franelle hopes that her hard work with the Luncheon will position it for continued growth and impact for the MS movement.

Jill Wasserstrom and Executive Vice President of Development Taylor Mallia attend the 2008 Luncheon, which featured Basketball Hall of Fame member Nancy Lieberman as the guest speaker.


commitment of bright young people to MS research

2010• Gilenya, first oral disease-modifying therapy for MS,

approved for relapsing forms • Ampyra approved to improve walking ability in people

with all types of MS• Nuedexta and Botox approved to treat specific symptoms

that interfere with quality of life in people with MS • International team co-supported by Society revises MS

diagnostic criteria to reduce the wait for accurate diagnosis

2011• Society supports controlled study to determine whether

vitamin D supplements can reduce MS disease activity • Promise: 2010 Nervous System Repair initiative is

completed, having jump-started the field, trained scores of promising young investigators, produced over 180 research papers, and leveraged millions of dollars in new funding

• Society-supported global consortium doubles the number of MS risk genes identified

2012• Launch of Progressive MS Alliance to speed the

development of therapies • Aubagio approved by FDA as second oral therapy for

relapsing forms of MS • Society task force launches effort to create a better tool to

track benefits of therapies on disability in MS, leading to formation of the MS Outcome Assessments Consortium

2013• Tecfidera approved by FDA as third oral therapy for

relapsing forms of MS • Barancik Prize for Innovation in MS Research is launched to

inspire novel research • Society commits $2.5 million to support the Network of

Pediatric MS Centers to provide essential infrastructure to facilitate research

• Launch of MS Prevalence Work Group to update the estimate of MS prevalence in the US

2014• FDA approves new dose of Copaxone to be taken less

frequently • FDA approves Plegridy, an interferon taken by

subcutaneous injection every 2 weeks • First large, phase 2 clinical trials of myelin repair strategy

for MS are launched • Large trial of ibudilast, funded by NIH and Society, begins

recruiting participants with progressive MS to test its ability to protect the nervous system from damage

The Houston On the Move Luncheon acts as a platform to increase awareness of multiple sclerosis and the innovative research and new therapies emerging today for people living with MS. For these reasons, Franelle couldn’t think of anyone better to honor than Judi Johnson who devoted much of her life to driving the Society’s mission forward. Franelle recognized her commitment to MS research and wanted to celebrate, “such a special lady with an energy and connection to MS,” expressed Franelle. Investment into MS research is critical to Judi, because not only are you helping people with MS, but, “you are opening windows to all of the autoimmune diseases.” Judi and her husband Jack Johnson fervently support MS research. After Judi was asked to be honored as the Person On the Move, Jack decided to increase the Wintermann Foundation’s gift to the Society and recently donated $242,318 to support two MS research projects at Baylor College of Medicine in Houston. When asked about her passion for research, Judi shared her memory of being at the Society Leadership Conference when it was announced that scientists could see the plaque on the myelin through a new device called the MRI. Moments like these change the course of medical history and investments, like those given by Judi and Jack Johnson, give promise toward a world free of MS. The progress in MS research is connected to the commitment of countless fundraisers and people coming together to do something about MS. Over the history of the Luncheon, there have been incredible developments in MS research. Some of these milestones include nine new therapies and three oral drugs available to people living with MS. For Judi, Jill and Franelle, the impact they have left on the MS community continues to flourish. All three women are connected to MS in different ways, but are united to drive research forward for a cure. On March 11, 2015, the work of these three women will culminate at the On the Move Luncheon as we celebrate ten years of impact.

Visit ontheMOVEtx.org to purchase your table or ticket today for the 2015 On the Move Luncheon.


Photo spread of programs and events from the past quarter.

SOUTH CENTRAL

QuarterIn PhotosWe’ve been busy here in the South Central Chapter! Here are a few photos from programs and events over the past quarter.

Melanie Griffey (pictured middle with Phil

and Patti Griffey) shared her story as the

Mission Moment at the second annual A

Vintage Affair for MS in Little Rock, AR

on September 25, 2014.

Family Discovery Camp was held

in October at Camp For All in Burton, TX. Camps are also held in

the spring for kids living with MS

(Champ Camp) and individuals with

progressive MS (Camp Can Do). Students from Marshall Middle Academy

of Fine Arts and Johnston Middle School

competed in the 5th Annual Chalk the

Walk for MS event on October 28 and 30.

Highlighted by a vintage Hollywood

theme, Uncorking the Cure for MS was

held in Tulsa, OK on October 23, 2014.

Pictured below are Sue and Steve Gerkin,

Event Chairs Lucia and Brent Laughlin, and

Suzanne and Michael Wallis.


Photo spread of programs and events from the past quarter.

Individuals, families and corporate teams joined together at Walk MS events across South Central this past fall. Pictured above: Peggy’s Patriots, the top fundraising team for Sugar Land Walk MS.

In September, Elda Jones (left) participated for the first time in Bike MS: The Mother Road Ride in Oklahoma. Elda was greeted by a sea of supporters cheering her on as she crossed the finish line in Chandler, OK. Among the supporters was Lynn Brickman (right), a fellow Oklahoman living with multiple sclerosis.

Jamie Benn, Dallas Star’s captain

and Olympic gold medalist,

selected the National MS

Society as his charity of choice

for the 2014-2015 Season by

providing four tickets to all home

games. At a reception last fall,

ticket recipients got a unique

opportunity to personally thank

Jamie for his donation. Pictured

above: Dallas Stars Tyler Seguin

(left) and Jamie Benn (right)

pose with Dallas Walk team

captain Leslie Regan, who had

her “Leslie’s Legs of Steel” team

t-shirt autographed.

Three months after being diagnosed with MS in 2011,

Erin Hulin served as an event volunteer cheering

on riders at the finish line of the Louisiana Bike MS

event. This year, Erin took on the challenge and rode

for the first time in the Bike MS: Dat’s How We Roll

2014, presented by Peoples Health. She raised more

than $2,400 and calls the event one of the biggest

accomplishments of her life. “I smiled, laughed, cried,

and shouted with joy. After being diagnosed with MS

three years ago, I never thought I would ever be able to

do something so physically demanding,” Erin said.

In August, the Society held its first Connection event in El Paso, TX, where 160 members of the MS Community came out to connect with one another, celebrate a successful Walk MS: El Paso, and learn about how they each can make an impact this year. Pictured above: staff member Andres Salgado, Ivan Mejorado (aide to U.S. Congressman Beto O’Rourke, 16th District of Texas), staff member Lyndee Groce, and volunteer Charlie Enriquez.MOVING TOWARD A WORLD FREE OF MS 23

M E D I C I N E

George J. Hutton, M.D., is Associate Professor of Neurology and Medical Director of the Maxine Mesinger Comprehensive Care Center at Baylor College of Medicine. He is a member of the National MS Society’s Health Professionals Volunteer Hall of Fame, the South Central Board of Trustees, a BP MS 150 participant and a member of the South Central Top Fundraiser Hall of Fame, having raised more than $100,000 since 2001.

Meet Dr. George J. Hutton

MS Why did you choose to specialize in multiple sclerosis?

GH I started Neurology residency at Baylor College of Medicine in 1997. At that time, the MS medications were just becoming available and we were still seeing a lot of patients in the hospital admitted with relapses. I enjoyed working with this patient population: generally young and in the prime of their lives. I saw a great need for better treatments and was excited by the opportunity to be involved in clinical research. I was also influenced by my mentor, Dr. Victor Rivera, who had such great relationships with his patients and their families.

MS As a professor, you are educating and developing the next generation of MS specialists. What do you enjoy most about teaching?

GH There is a great need for more MS specialists in the United States. As the medications become more numerous and more complex, there is a growing need for neurologists who are specialized in managing this multifaceted disease. I am teaching all day to residents, fellows, medical students, other physicians, patients and families. Of course, I am also continually learning from my patients. My hope is that one of our learners develops that extra spark of interest in the field of MS and goes on to pursue advanced training (MS fellowship). The most enjoyable aspect of teaching is when you share a certain piece of information and then, at some point in the future, you hear that learner imparting this knowledge to another person.

MS Why is comprehensive care important?

GH Multiple sclerosis and related demyelinating diseases are quite varied in their presentation. Although some fortunate patients may be mildly affected, others can have severe disability. The MS-

trained neurologist can provide medication and other treatments for many of the associated symptoms, but there are others that are best approached by physician specialists in other disciplines, such as neuro-ophthalmology, neuro-urology, physical medicine & rehabilitation (PM&R), neuropsychology, etc. Furthermore, MS patients have needs that are best managed by a licensed social worker or a registered nurse. This multi-disciplinary, comprehensive care ensures that all the physical, emotional, cognitive, and psychosocial aspects of the disease are managed in the most appropriate way.

MS What are some challenges you face in your work?

GH There are many challenges facing subspecialty MS neurologists. Insurers and managed care organizations are limiting our medication choices and imposing barriers to access for certain medications or procedures. The paperwork burden for prior authorizations, disability forms, medication assistance forms, and


others, has become worse every year. There is much greater demand for patient care than we can handle, leading to long wait times to secure an appointment. Reimbursements are going down while the paperwork and insurance barriers are increasing.

MS What are you currently working on related to multiple sclerosis?

GH I am involved in several clinical trials for new therapeutics in multiple sclerosis, including relapsing remitting and secondary progressive disease. We will also begin enrolling soon for a new trial in relapsing neuromyelitis optica (NMO). I have been involved in the study of hematopoietic stem cell transplantation in MS (bone marrow transplantation) for over a decade, including the NIH-sponsored HALT-MS trial.

MS Are there any emerging therapies, research trends or breakthroughs in multiple sclerosis that you are excited about?

GH All of the medications that have been approved for multiple sclerosis thus far attack different aspects of the immune system to try to decrease the autoimmune attack on the central nervous system. These have been fairly successful, and we are generally seeing less disability and less relapses in patients with the use of such medications. However, many patients are still left with various degrees of disability. What we need are repair strategies, and we are finally seeing some of these enter into the clinical trial realm. We will be watching these trials eagerly

over the next few years to see if such medications prove to be useful.

MS You’ve been connected to the National MS Society for many years, and in many different ways. Can you share a few of your favorite memories, moments or successes?

GH I have been involved with the National MS Society ever since I joined the Clinical Advisory Committee in 2001. I have since chaired that committee as well as the Chapters Program Committee, and have served on the Board of Trustees for the past seven years. Although I enjoy the committee work and feel I have been able to contribute significantly in providing physician input at the level of the board, my most cherished memories have involved the BP MS 150. Year after year (this will be my 15th year riding), I continue to find it very inspiring to see all the fabulous support of the MS patients and their families, the local communities, and the riders coming together in such a big way for a great cause. It was incredible to be at the awards ceremony after the 2014 BP MS 150 for the announcement that over $20 million had been raised in just one year from this one event.

MS How do you like to spend your time when you are away from work?

GH I love to spend time with my wonderful family, including my wife, Jill and our two sons, Ian and Zachary. We enjoy traveling, having most recently visited Peru this past summer. I enjoy cycling and kayaking, mostly down in Galveston.

MS The work you do is significant in helping individuals and families affected by MS live their best lives. How has that impacted your life?

GH I appreciate that comment because that is the goal of everything I do in my clinical work, my clinical research and my teaching. I continue to be inspired by my patients with MS, as they strive to help improve their own lives. I am also inspired by their families and other care networks. MS is not an easy disease to have and no one asked to have it, but a majority of our patients approach the disease with an admirable grace and attitude. This is why I feel driven to serve in volunteer leadership positions within the National MS Society and to continue to raise money as a rider in the BP MS 150.

MS What does receiving the Endowed Professorship mean to you?

GH It is such a great honor to be named the inaugural holder of the Linda and John Griffin Endowed Professorship at Baylor College of Medicine. An endowed professorship is one of the highest honors awarded to a faculty member, so I am humbled to receive this. This will allow me to continue my clinical research and educational endeavors, and to expand upon the excellent MS comprehensive care provided at Baylor College of Medicine. I am truly grateful to the Griffin family for having the confidence and trust in me and the Multiple Sclerosis program at BCM.


R. Lee Archer, M. D. is a board certified neurologist with 26 years’ experience practicing medicine. He is Associate Professor in the University of Arkansas for Medical Sciences. Dr. Archer attended medical school and completed his residency at the

University of Arkansas for Medical Sciences.

James M. Barry, Jr. M.D. is a board certified neurologist with 27 years’ experience practicing medicine. He is a staff neurologist and partner of Kane Hall Barry Neurology with offices in Bedford, Texas and Keller, Texas. Dr. Barry attended medical school at Baylor

College of Medicine and completed his residency at the University of Texas Southwestern Medical School in Dallas, TX.

Angela B. Flores, M.D. is a board certified neurologist with 11 years of experience practicing medicine. She is the Assistant Professor, Department of Neurology and Neurotherapeutics at Parkland Memorial Hospital Neurology Clinic in Dallas, TX and has a special

clinical interest in Multiple Sclerosis and Inflammatory Disease of the Nervous System. Dr. Flores received her medical degree from the University of Texas Medical School at San Antonio and completed her residency at UT Southwestern Medical Center at Dallas.

Corey C. Ford, M.D., Ph.D. is Professor of Neurology at the University of New Mexico in Albuquerque, where he serves as Director of the Multiple Sclerosis (MS) Specialty Clinic, Assistant Dean for Research, and

Medical Director of the Pharmacy Department. He has 32 years of experience practicing medicine. He received a doctoral degree in biophysics from the University of Texas Health Sciences Center, and attended medical school at the University of Virginia. He completed neurology training at the University of Rochester, where he stayed an additional two years as a fellow in the MS

Program.

Douglas E. Lewis, D.O. is a board certified neurologist with 23 years of experience and practice at BSA Amarillo Diagnostic Clinic in Amarillo, TX. Dr. Lewis received his medical degree from the University of Osteopathic Medicine and Health Science in Des Moines, IA.

Katherine M. Meredith, Psy.D is a licensed psychologist in the Department of Neuropsychology at Baylor Institute for Rehabilitation (BIR) in Dallas who provides neuropsychological evaluation and therapy services in both inpatient

and outpatient settings. Her clinical interests involve assessment of a variety of neurological conditions and

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.

New Partners in MS Care

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consultation to treatment teams in acute rehabilitation. She received her doctorate from Nova Southeastern University in Fort Lauderdale, FL. and completed internship training at Baylor Institute for Rehabilitation.

Annette F. Okai, M.D. is a board certified neurologist specializing in the evaluation an d treatment of multiple sclerosis (MS). She has 12 year of experience practicing medicine and is Medical Director of the MS Treatment Center of Dallas and Clinical Assistant

Professor at Texas Tech University. Dr. Okai received her medical degree from MCP-Hahnemaan University and completed her residency at Thomas Jefferson Hospital, both located in Philadelphia, PA.

Tania Reyna, M. D. is a board certified neurologist with 16 years of experience practicing medicine. She is now with the Multiple Sclerosis Center of Excellence Oklahoma Medical Research Foundation. Dr.

Reyna received her medical degree from Mexican-American University of the North School of Medicine and complete her neurology residency at the University of Oklahoma Health Science Center.

Bharathy E. Sundaram, M.D. is a board certified neurologist with 29 years of experience practicing medicine. She is affiliated with multiple hospitals and is one of several neurologists with the Texas Institute of Neurological Disorders. Dr. Sundaram received her medical degree from

Madras Medical College, University of Madras India and completed her residency at St. Louis University Health Science Center in St. Louis, MO.

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.


Philip L. De Jager, MD, PhD, Neurologist at Brigham and

Women’s Hospital and Associate Professor of Neurology at Harvard Medical School, is the 2014 recipient of the Barancik Prize for Innovation in MS Research, an international award established in 2013 to drive progress in multiple sclerosis (MS) research. Dr. De Jager, a clinician and a researcher, was selected for his work in applying powerful analytic approaches to better understand how genes and the environment interact with the goal of developing personalized treatments for MS and, ultimately, disease prevention. Dr. De Jager is a founding member of the International MS Genetics Consortium (IMSGC) and has played a key role in nearly every major gene discovery and advancement over the past decade. Dr. De Jager led the meta-analysis of genome scans that the Consortium published in 2009, which at the time, was a novel method in human genetics, and one of the first instances in which this powerful analytic approach was deployed for any human disease. This work has culminated in the creation of the new MS Genomic Map that will be released in 2015 by the IMSGC. He is continuing his work

through the International MS Genetics Consortium to create a definitive genetic map of MS susceptibility. He is using the findings from this map to understand the functional consequences of MS genetic risk factors to create potential personalized approaches to predict, treat and ultimately prevent MS. Dr. De Jager has implemented several novel resources for the MS community, including the PhenoGenetic project with over 1,800 healthy individuals and the Genes & Environment in MS (GEMS) project that recruited over 3,000 MS family members in the last three years. These and other long-term studies will attempt to answer questions that people affected by MS need to know, including why some people develop MS and others don’t, why certain people respond differently to medications and treatments, and why some people’s MS progresses faster than others. “Overall, I see two compelling and complementary projects,” Dr. De Jager explained. “First is to understand a person’s trajectory from not having MS to their diagnosis. Here, identifying a treatment for the prevention of MS is a key goal of our studies, but it requires a complementary

approach to identify the individuals at highest risk of developing the disease since most family members do not develop MS.” Dr. De Jager added, “The second project is to gather enough data on a single, large set of MS patients to set the stage for an impactful discovery effort to understand MS-related neurodegeneration.” Here, he has creatively used technology to enhance patient engagement through the use of patient-powered web platforms, electronic health records and smartphone-based tools to better characterize MS participants in these studies. “We’re thrilled to present the 2014 Barancik Prize to Dr. De Jager for his visionary approach towards understanding the genetic architecture of MS,” said Dr. Timothy Coetzee, Chief Advocacy, Services and Research Officer at the National MS Society. “Dr. De Jager has leveraged his deep understanding of the clinical context of MS with his background in molecular genetics and immunology, to design new ways of approaching and answering challenging MS questions.” Dr. De Jager recently presented the latest research from the Consortium at ACTRIMS-ECTRIMS, the world’s largest scientific MS

Cutting Edge Genomic MS Research EarnsPhilip De Jager, MD, PhD the 2014 Barancik Prize for Innovation in MS Research

R E S E A R C H


conference. The genetic study involves over 80,000 subjects and is funded by the National MS Society. Building on previous studies, it brings the total number of identified gene variants related to MS risk to at least 159. These findings set the stage for identifying the roles of specific immune cells and the brain in MS susceptibility, and may lead to new approaches to treating the disease. Dr. De Jager is committed to pursuing critical questions in clinical MS research. This leads him to select the best tools of basic molecular research and advanced human biometric phenotyping to examine how environmental influences and one’s own genes interact. This information, when analyzed with advanced bioinformatics, will provide the most effective response to an MS challenge and will contribute to improving the lives of both his patients and that of their caregivers.

Biographical Sketch - Dr. Philip De Jager Philip L. De Jager, MD, PhD, is the Steven R. and Kathleen P. Haley Distinguished Chair for the Neurosciences at the Brigham and Women’s Hospital, and is an associate professor of neurology at

Harvard Medical School. He is the director for basic and translational research at the Institute for the Neurosciences at the Brigham and Women’s Hospital and is an associate member of the Broad Institute of Harvard University and the Massachusetts Institute of Technology. He continues to practice clinical neurology, seeing patients within the Partners Multiple Sclerosis Center that is affiliated with the Brigham and Women’s Hospital and Massachusetts General Hospital in Boston. In 2008, Dr. De Jager received the prestigious Harry Weaver Neuroscience Scholar Award from the National MS Society, which was a catalyst that enabled him to develop several innovative, cutting-edge projects. Over the years, his work has evolved to pursue an integrated approach to MS that includes projects investigating other neurodegenerative diseases and healthy aging to develop a comprehensive understanding of the genomic, epigenomic, and neuroimmunologic architecture of how the brain responds to different challenges and how this ability changes as we age. Dr. De Jager received his BS (summa cum laude) in molecular biophysics & biochemistry and

French literature from Yale University. He received his Ph.D. in neurogenetics from The Rockefeller University and his M.D. from Cornell University Medical College. He also completed an MMSc program in clinical investigation at Harvard Medical School and the Massachusetts Institute of Technology. In the clinical sphere, he completed his neurology training at the Brigham and Women’s Hospital and Massachusetts General Hospital before pursuing subspecialty training in neuroimmunology, also at the Brigham and Women’s Hospital and in human genetics at the Broad Institute.

About the Barancik Prize for Innovation in MS Research The Prize 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.


Inspired to help a friend who was recently diagnosed with MS, Michael Plunkett created his own MS 150 at his local CrossFit gym. He called the event #MSWOD150, or MS Work Out of the Day 150, where people had to complete 150 reps of movement between runs. The workout included exercises like 150 burpees, 150 sit-ups and 150 pull-ups. Michael inspired people in his CrossFit community to participate and raise funds to help create a world free of MS. #MSWOD150 raised $430.

Just two months after having her second baby,

Eileen Youens was looking for a way to find some

“me time” and decided to train for the The Color

Run 5K. To keep her dedicated to completing the

5K, Eileen chose to raise money for her sister who

lives with MS. Eileen wanted to do what she could

for her sister so she can “live a long, full, and healthy

life, and be the mom she wants to be for her two

sweet boys.” Eileen not only finished her first 5K

ever, but also raised $990 to support people like her

sister who are affected by MS.

Peter Livingstone raised funds in

memory of his mother who lived with MS

by running a 100 mile foot race in New

Mexico called the Angel Fire Endurance

100 Mile. Peter was convinced he wasn’t

going to finish the race as he climbed

treacherous terrain in the middle of the

night, but because of the memory of his

mother and the generosity of his friends

and family, Peter persevered and finished

within the 32 hour cutoff time. Peter

raised $1,265.

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. Learn more about DIY Fundraising by visiting nationalMSsociety.org/diy.


National Multiple Sclerosis SocietySouth Central Chapter8111 North Stadium Drive, Suite 100Houston, Texas 77054

Winter 2015 MSConnection: South Central edition

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Transcript of Winter 2015 MSConnection: South Central edition