Spring 2016 MSConnection - South Central Chapter by National MS Society: South Central

SPRING 2016 SOUTH CENTRAL CHAPTER

MS CONNECTION NEWSLETTER

EAT MEAT. RIDE BIKES. END MS. P. 10

INSIDE THIS ISSUE GET CONNECTED Calendar p.31

THERAPY AT BENNIE’S BARN

FUNDING THE CURE FOR PROGRESSIVE MS

BIKE MS CHAMPIONS

STUDY ON EMPLOYMENT ISSUES

WELCOME

MS CONNECTION: SPRING 2016 TOGETHER WE ARE STRONGER

MAKING A GREATER IMPACT Are you ready to create change and improve the lives of individuals with MS? Do you want to have FUN? Then we have plans for you! Together we are stronger and together we make an even greater impact. Walk MS and Bike MS events are taking place throughout South Central year-round.

Regional Executive Vice President

MARK NEAGLI Board of Trustees Chairman

WILLIAM BYERLEY Houston, TX Treasurer

DON MCCORMACK Houston, TX |

Secretary

DAVID CARDER Tulsa, OK

THE SOCIETY MOBILIZES PEOPLE AND RESOURCES SO THAT EVERYONE AFFECTED BY MULTIPLE SCLEROSIS CAN LIVE THEIR BEST LIVES AS WE STOP MS IN ITS TRACKS, RESTORE WHAT HAS BEEN LOST AND END MS FOREVER.

On the Cover: Meat Fight

Walk MS, ranked #12 among the top peer to peer events and is the seventh largest walk in the country, takes place in over 550 communities with more than 330,000 people participating annually. We’ve been walking since 1988 and to date have raised more than $920 million to drive groundbreaking research and provide lifechanging programs. Walk MS is one of the most common ways newly diagnosed people with MS get connected with the Society. It also allows communities to come together to rally for family, friends, coworkers and neighbors and to change the lives of people living with MS. Register at walkMS.org and start walking!

The Bike MS series, ranked #5 among peer to peer events overall, raises more money than any other cycling event for any other cause and is the largest fundraising bike event in the world. To date, Bike MS cyclists, volunteers and donors have raised over $1 billion so people affected by MS can live their best lives as we stop MS in its tracks, restore what’s been lost and end MS forever. All you have to do is register, raise money and ride! This spring, here in South Central we have the BP MS 150 (April 16-17) and Bike MS: Sam’s Club Round-Up Ride (April 30-May 1). World MS Day 2016 is on May 25 and the theme will be ‘Independence.’ This includes employment, but also looks at all of the other ways people with MS achieve independence. Visit worldmsday.org to get involved and raise awareness of the work that lies ahead of us.

As you can see there is something for everyone so please join us. These events, and more, raise funds and awareness as we move together to create a world free of MS. Volunteers create the momentum and connections; our volunteers make it happen. We are grateful for your time, passion and commitment. Together we are stronger.

Sincerely,

Mark Neagli South Central Chapter

SOUTH CENTRAL CHAPTER

OFFICE LOCATIONS ARKANSAS

MSarkansas.org @NMSSarkansas

Little Rock 10825 Financial Centre Parkway, Ste. 330 Little Rock, AR | 72211 | 501-663-8104

LOUISIANA

MSlouisiana.org /MSlouisiana |

@NMSSlouisiana

Metairie/New Orleans 4613 Fairfield St. Metairie, LA | 70006 | 504-322-3790

NEW MEXICO

MSnewmexico.org /MSnewmexico |

@MSsocietyNM

Albuquerque 3540 Pan American Fwy NE, Ste. F Albuquerque, NM | 87107 | 505-243-2792

OKLAHOMA

MSoklahoma.org /MSoklahoma |

@Oklahoma_NMSS

Oklahoma City 730 W. Wilshire Blvd., Ste. 103 Oklahoma City, OK | 73116 | 405-488-1300 Tulsa 4606 East 67th St., Ste. 103 Tulsa, OK | 74136 | 918-488-0882

TEXAS

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 Midland 1031 Andrews Highway, Ste. 304c Midland, TX | 79701 | 432-522-2143

North Texas 2105 Luna Road, Ste. 390 Carrollton, TX | 75006 | 469-619-4700

San Antonio 9830 Colonnade Blvd. Ste. 130 San Antonio, TX | 78230 | 210-694-3200

MS NAVIGATOR速 1-800-344-4867, OPTION 1,

contactusnmss@nmss.org | MSConnection.org

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.

WELLNESS

MS CONNECTION: SPRING 2016 with movement challenges. Riding provides physical benefits as the shape of a horse’s back and its movement simulates the way people walk. A horse’s gait and the riding process also help individuals living with MS to stretch their hip joints and increase core strength, agility and muscle tone.

RIDING THERAPY AT BENNIE’S BARN BY NICHOLAS D’AQUILLA

Amazing things are happening at Bennie’s Barn equine therapeutic riding ranch in Enid, Oklahoma. Bennie’s is an all-volunteer owned and operated 501(c)(3) non-profit horse ranch providing life-changing hippotherapy riding sessions to individuals living with MS.

Hippotherapy is a treatment through which PATH (Professional Association of Therapeutic Horsemanship) certified physical and occupational therapists develop custom horseback riding plans for persons

At Bennie’s the experience starts by contacting Chip Baker, Bennie’s founder and executive director, or one of the committed volunteer staff members to set up a time to meet the horses and staff. After consulting with a PATH certified therapist to establish a riding plan and set goals, it’s off to the stables for a meet and greet with the 20 rescued horses that now call the ranch home (be sure to say hello to “Clint Eastwood” & “Shiloh” when you go!). Choosing a horse is an important part of the process, as one of the most valuable benefits of hippotherapy is the emotional bond that develops between the patient and horse. The actual riding takes place with a Bennie’s PATH instructor leading the way and controlling the front of the horse while two trained volunteers “EVERYONE DESERVES HIS OR HER GLORY AND IT’S THEIR TIME TO SHINE. FOR THOSE INDIVIDUALS, BENNIES BARN IS THEIR BALL GAME, THEIR STAGE, THEIR PEDESTAL. THE RIDERS ARE OUR TEAMMATES AND OUR HEROES.” walk on either side to ensure rider stability.

Results have been incredible. The staff at Bennie’s has witnessed riders experience physical and spiritual benefits every time. A recent triumph involves an individual in a wheelchair who has been living with MS for 25 years. After working with the staff, she

NATIONALMSSOCIETY.ORG | 1-800-344-4867 is now able to ride on a regular basis and has experienced marked improvement in her mobility. Her inspirational results are becoming a recurring theme at the ranch.

The therapeutic benefits of horseback riding are impactful, but the experience at Bennie’s can be significant in many different ways. Individuals desiring additional interaction with the horses can volunteer to help care for them and further develop an emotional and psychological bond with their riding partners. Tending to the horses helps clients build selfesteem and a sense of connection with the world around them. The miracles occurring at Bennie’s do not belong only to the clients. All 20 of the horses residing at the ranch were rescued from being abused, neglected or displaced. The horses are being rehabilitated by the same physical and intangible betterments flowing to the riders.

The actions of the dedicated staff and the impact they are having on both individuals living with MS and the rescued horses are undoubtedly the spirit of Bennie Mullins, the ranch’s namesake, at work. Bennie was a woman admired by many and quick to go out of her way to help or save others, whether person or animal. Bennie’s staff carries on with the belief that “everyone deserves his or her glory and it’s their time to shine. For those individuals, SAMPLE PHOTO CAPTION Bennies Barn is their ball game, their stage, their pedestal. The riders are our teammates and our heroes.”

After two years of operation it is evident that the volunteers at Bennie’s are holding true to their beliefs and perpetuating the goodness that was embodied by Bennie herself, as Bennie’s Barn has rescued 20 horses and provided over 2,000 low-cost or

no-cost riding lessons to individuals seeking to improve their physical and spiritual wellbeing.

The National MS Society is helping their efforts, as well. This past year, the Society was able to give a $2,000 grant to help pay for a special therapeutic saddle, an amount that was matched by an anonymous donor. Together, we are making a difference in the community. n Learn more about the impact that wellness programs, like hippotherapy, can have on individuals living with MS by visiting nationalMSsociety.org/Living-Well-With-MS.

Learn about Society-sponsored wellness programs in your area by contacting an MS Navigator at 800344-4867, option 1.

GIVING

MS CONNECTION: SPRING 2016

FUNDING THE CURE FOR PROGRESSIVE MS BY KRISTINA PECK

The National Multiple Sclerosis Society is pursuing all promising research paths and collaborating worldwide to drive progress in progressive MS research, for which few therapies currently exist. However, that landscape is changing with clinical trials of therapies with nerveprotecting properties already showing promising results. It is news that Karen Chesney Miles has been waiting a long time to hear. Over the years, Karen has been a leader in funding major advancements in MS research by proving that together, we are stronger. Karen’s passion comes from watching her brother-in-law, John, cope with his diagnosis of progressive MS, of which there are no FDA approved treatment therapies. Within 10 years of being diagnosed, John was unable to continue working and lost the ability to walk. He now requires a full time caregiver and experiences hand tremors due to his MS. “It is heartbreaking to see what my brother-in-law and sister, Carol, have gone through,” says Karen. Determined to help her brother-in-law regain functionality, she began volunteering with the National MS Society through Walk MS: San Antonio. She felt connected to the hundreds of people just like her who were walking in honor of their loved ones affected by MS. “It was reassuring to meet other people who were committed to the same thing I was,” says Karen. While John’s health continued to decline, Karen’s engagement with the Society continued to grow. She was soon asked to be the chair of the inaugural Community Leadership Council in San Antonio, which gave Karen an opportunity to make a greater impact on MS research. Karen encouraged one of her fellow Council members

NATIONALMSSOCIETY.ORG | 1-800-344-4867

(Opposite page:) Karen speaking to attendees and donors at a Golden Circle event she hosted on Sept. 17, 2015. (Above, clockwise from top left:) Karen’s inspiration and the people she most admires, including her sister Carol, brother-in-law John and nephew Barrett McPhaul; Karen with other leaders in the MS movement at a Sept. 2015 Golden Circle event in San Antonio, including Laura Vaccaro, Bill Klesse and Dr. Doug Landsman; Mark Neagli, Regional Executive Vice President and Tony Ralf inducting Karen and her family into the 2013 Fundraising Hall of Fame. “I WAS EXCITED TO HAVE THIS OPPORTUNITY BECAUSE I WAS ABLE TO HAVE CONVERSATIONS WITH BOARD MEMBERS AND STAFF ABOUT HOW MUCH MONEY WE WOULD BE ABLE TO PUT TOWARD MS RESEARCH.” to host the first Golden Circle event in San Antonio, an event that raised $44,000 to fund an MS research pilot grant. “The success of our first Golden Circle event would not have been possible without the collaboration and enthusiasm of the Council,” she said.

Karen’s leadership and success with the Community Leadership Council propelled her work with the Society farther when she was elected to the South Central Board of Trustees, where she uses her background in accounting as a member of the Finance Committee. “This has been an exciting opportunity to have conversations with board members and staff about how much money we would be able to put toward MS research.”

Through her work on the Finance Committee, Karen came to the conclusion that the South Central Chapter had room to increase its

GIVING

funding in MS research from $1.8 to $2 million. After making her case for the increase, the Finance Committee Chair went to the South Central Board of Trustees for review and approval of the research gift amount–and it was approved. “It felt amazing to effectively leverage the success and the amount of money our Chapter had raised from the previous year and make a significant difference in MS research.”

“IT IS ONLY A MATTER OF TIME BEFORE WE UNLOCK THE MYSTERY OF MS, ESPECIALLY PROGRESSIVE MS, SO MY GOAL IS SOONER RATHER THAN LATER. ”

Shannon Nelson, Associate Vice President of Individual Giving and Leadership Events for South Central commended Karen on this accomplishment by saying, “Karen has changed the dynamics of the Board by rallying people and getting them excited about the impact we can make.” Karen believes the key to a world free of MS is connecting others to the MS movement and sharing her enthusiasm for supporting MS research. “It is only a matter of time before we unlock the mystery of MS, especially progressive MS, so my goal is sooner rather than later.” Understanding the urgency to find solutions, Karen hosted a Golden Circle event on Sept. 17, 2015 with a matching gift of $10,000 from The Chesney Miles Charitable Fund. During this event, Karen found ways to connect her friends and family to a cause that was close to her heart and raised $32,000 by the end of the night. In addition to empowering her personal network to give through the Golden Circle

MS CONNECTION: SPRING 2016 event, Karen also launched a challenge to her peers on the South Central Board of Trustees asking them to double another matching gift of $50,000 from The Chesney Miles Charitable Fund. Karen realized there was a unique opportunity to share her passion for the International Progressive MS Alliance and inspire her fellow board members to support the Alliance – an ever-expanding alliance of organizations from around the world that is funding research studies in 11 countries as part of a global effort to end progressive MS. Her challenge paid off, raising a total of $100,000, an amount that will now be matched by the Yellow Rose Gala Foundation this spring. “With MS experts in different countries collaborating, I am confident that they will find a repair treatment for progressive forms of MS,” said Karen.

This dream is becoming a reality sooner than imagined. The experimental therapy ocrelizumab was granted “Breakthrough Therapy designation” by the U.S. Food and Drug Administration after large scale clinical trials showed positive results in people with primary-progressive MS. Meanwhile, the MS-SMART trial is testing three therapies that may have nerve-protecting properties in secondary-progressive MS. Studies are investigating complementary and nontraditional therapies, as well. MS research breakthroughs are only possible through the determination of individuals across our movement, like Karen Chesney Miles, who will not stop until a cure for MS is found. n Learn more about the latest in progressive MS research and how you can help fuel progress by visiting nationalMSsociety.org/research

NATIONAL VOLUNTEER WEEK

NATIONALMSSOCIETY.ORG | 1-800-344-4867

APRIL 10– APRIL 16, 2016

We are celebrating National Volunteer Week by highlighting these six South Central Chapter volunteers, and we thank our thousands of dedicated volunteers who continue to help us create a world free of MS.

Audra Rea Laminack | Began volunteering with the Society: 2005 Audra is a passionate MS activist who works tirelessly to move legislation forward that improves the lives of everyone affected by MS. Serving as Chair of the Panhandle Community Leadership Council, Audra also connects her local community to the mission of the Society and its work to create a world free of MS.

Veronica Lewis | Began volunteering with the Society: 2015 Veronica is a dedicated Self-Help Group leader who connects people to information, resources and others with shared experiences, so each person with MS can live their best life. With an emphasis on wellness, she and her Self-Help Group formed a Walk MS team in 2015, which ended up being the Top Fundraising Team for Walk MS: Sugarland.

Lucia and Brent Laughlin | Began volunteering with the Society: 2011 Lucia and Brent Laughlin are creative fundraisers who have made an impact in the Tulsa community and beyond through their leadership on the Uncorking the Cure for MS Event Committee. 2015 was not only a knockout year for Uncorking the Cure for MS, but also for Brent’s DIY, Climbing Kilimanjaro for Nancy, that raised more than $32,000.

Mark Preston | Began volunteering with the Society: 1999 Mark is a committed volunteer leader who leverages his personal and professional connections to increase participation in Society events such as the On the Move Luncheon and Bike MS: Dat’s How We Roll. In addition, Mark lends his guidance and wisdom to the Louisiana Community Leadership Council through his dynamic leadership.

Julia Moore | Began volunteering with the Society: 2013 Each year, Julia plays an integral role at the BP MS 150 finish line recruiting, scheduling and managing over 600 volunteers to support all of the moving parts of this two-day ride from Houston to Austin. She has inspired countless people to join the movement and volunteer at the largest fundraising bike ride in North America.

Donna Seagrave | Began volunteering with the Society: 2008 Donna’s passion for improving the lives of people living with MS is evident in her work as a Self-Help Group Leader and a Community Health Relations Representative. She focuses primarily on providing information and resources to underserved areas and populations, including long term care and assisted living facilities in New Mexico.

Visit volunteerMS.org to learn how you can make a difference in your own community.

COVER STORY

MS CONNECTION: SPRING 2016

EAT MEAT. RIDE BIKES. END MS. BY KELLY JO TULLBERG

WHEN YOU ARE A JAMES BEARD AWARD-WINNING WRITER WITH A PASSION FOR REALLY GREAT BARBECUE, SUCH AS ALICE LAUSSADE, YOUR BACKYARD PARTIES CAN BE BIGGER THAN MOST.

NATIONALMSSOCIETY.ORG | 1-800-344-4867 In 2010, Alice and her husband Mike turned their usual barbecue party into a competition as a way to share their enthusiasm of the cuisine with friends and family. Thus, Meat Fight was born. The next year Alice’s brother, Jim, was diagnosed with multiple sclerosis. “He immediately said he wanted to do something, so he bought a bike and decided to ride in Bike MS: Sam’s Club Round-Up Ride,” Alice said. Jim formed a team and invited Alice and Mike to join him. They turned their backyard Meat Fight event into their team fundraiser and raised $2,000 that year.

Seeing the potential in the event, a friend of Alice’s who is a chef suggested they make Meat Fight a public event. In 2012, they brought Meat Fight to the masses. The competition attracted 12 Dallas-area chefs, whose food was judged by some of the most acclaimed barbecue experts in the Texas barbeucue categories of brisket, sausage, pulled pork and more. Tickets sold out in one hour, and $20,000 was raised. The following year Meat Fight more than doubled the funds raised, and welcomed actor, writer and humorist, Nick Offerman as a special guest. Having raised $100,000 in 2014 and an impressive $150,000 this past winter, the event not only continues to bring in more money, but also more fun. They added a “meat midway” filled with meat-themed midway games, and this year’s theme of “Merry Meatmas” included Meat Elves and Santa in a bacon sleigh. It is an incredible fundraiser for their Bike MS team, PlusONE/Meat Fight, with 100 percent of the base ticket price going directly to the National MS Society and programs that support those living with MS.

“We are getting an entirely new group of people involved in fundraising. It’s a fun event

COVER STORY

first because that’s how it was born, but it also raises a lot of money. We call it fun-lanthropy,” says Alice. “Our stories are not about sadness and the devastation of this disease, but about hope. We’re going to beat MS and make people feel better in the process.”

One way they make people feel better is through the unique Meat Fight Meat Bike program. During his first Bike MS experience as a cyclist, Jim noticed there was a special tent at the finish line where people living with MS could sit and cheer, which was very encouraging and inspirational. However, he wanted to see more people with MS do the ride as participants, not just spectators. “We know from personal experience that symptoms may diminish with more cardio, so encouraging individuals living with MS to ride can really help them,” Alice said. “OUR STORIES ARE NOT ABOUT SADNESS AND THE DEVASTATION OF THIS DISEASE, BUT ABOUT HOPE. WE’RE GOING TO BEAT MS AND MAKE PEOPLE FEEL BETTER IN THE PROCESS.”

Alice and Jim looked into why more people with MS weren’t riding, and they discovered that bikes are cost prohibitive for some people. To address this need, they decided to use some of the money they were raising through Meat Fight to purchase bikes for people living with MS. In order to receive a bike, selected recipients had to agree to meet the Meat Fight team at a start line of any Bike MS event within the year to give riding in it a shot.

“It is amazing to see the impact and change that happens when you give someone living with MS this challenge,” Alice said. “A lot of the people who have received

COVER STORY

the bikes only did Walk MS before because they didn’t believe they could be on a bicycle. And now they are riding in a Bike MS event!”

In the program’s inaugural year, 2015, Meat Fight put $10,000 of the funds raised towards Meat Bike and gave away 10 bikes to individuals living with MS, including starter kits with necessary tools and equipment to help them along the way. All 10 recipients rode in the 2015 Bike MS: Sam’s Club RoundUp Ride, although Alice hopes they are able to expand the program to eventually include other Bike MS events.

“WE HAVE RIDERS OF ALL SHAPES AND SIZES, ALL EXPERIENCE LEVELS, RIDING ALL SORTS OF BIKES. SOME OF US HAVE MS, SOME OF US HAVE LOVED ONES WHO ARE FIGHTING MS AND ALL OF US ARE OUT TO HAVE A GOOD TIME,” JIM SAID.

MS CONNECTION: SPRING 2016

In 2016, Team Meat Fight’s goal is to give 30 bikes to future Bike MS participants living with MS. So far, they have already gifted 20 of the 30 bikes they hope to give. And with the help of their bike partnership with Richardson Bike Mart, they have been able to stretch their dollars even further this year. Meat Bike has the potential to provide positive benefits in both physical and emotional health for people living with MS. “I was diagnosed with MS in 2008 and was lost, scared and felt alone. I had learned that exercise and staying positive were keys to fighting the disease so I started working out more and tried keeping a positive outlook but still felt somewhat alone with MS,” said Lyndsey, a 2015 Meat Bike recipient. “After receiving my bike, several of us from the team started connecting and scheduling practice rides. Suddenly I had a group of people I could connect with that understood my struggles and fears, but we also created a group where we can encourage

NATIONALMSSOCIETY.ORG | 1-800-344-4867

and support each other to stay active and fight this disease together! This program helped us all create an unbreakable bond that has changed my life.”

While recipients do not have to ride with the Meat Fight team, the team has experienced exponential growth since it began Meat Bike. What began with five riders in 2011, is now a team of more than 100 registered riders for the 2016 Bike MS: Sam’s Club Round-Up Ride in May. Jim says they take the same spirit of “marginally controlled chaos” from the Meat Fight event and apply it to the team for an unforgettable experience. “We have riders of all shapes and sizes, all experience levels, riding all sorts of bikes. Some of us have MS, some of us have loved ones who are fighting MS and all of us are out to have a good time,” Jim said. “I can tell you without all of the support I have received there is no way I could have completed even 10 miles

of my first Bike MS event. The research and programs that the National MS Society funds have made it possible for me to do the things that years ago might not have been possible for someone living with MS.” ■

(Clockwise from top left): Nick Offermann attends the 2013 Meat Fight; Meat Fight attendee cheers on the competition; Meat Fight is a family affair that includes Jim, Cathy, Alice, Mike and their parents; attendees enjoy the Meat Midway; Meat Bike recipient is ready to train for Bike MS. (Above): The coveted Meat Fight Beer Can trophies.

COVER STORY

MS CONNECTION: SPRING 2016

Anna Leigh shares her story at the 2015 Meat Fight event.

THE MEAT FIGHT IMPACT BY ANNA LEIGH KIRK

It’s been almost nine years since a doctor came into my hospital room and told me that I have MS. I was 27 and newly married. I was scared, lost and felt so alone. I allowed myself a few weeks of a pity party, and then I jumped in full force to do what I could to help find a cure. I began volunteering and fundraising for the National MS Society, and I was fortunate enough to work for this great organization for five years leading the Walk MS efforts in North Texas. During this time, we welcomed our first son into our family. I was trying to

be the star wife, mother and employee. I was going to save the world. Funny thing about trying to save the world…if you don’t take care of yourself, it all seems to fall apart.

My MS was progressing and I had just accepted certain things about my life and my disease. I thought that’s the way I was supposed to feel, that there was nothing I could do about it. This was what living with MS was for me, and I had to come to terms with it. Boy was I wrong. Nearly three years ago, we made the decision for me to be at home with my family. Slowly but surely I started taking baby steps to take care of myself. We welcomed our second son almost two years ago and my focus became even more intense. I had to take care of myself to be there for these two rambunctious boys. This past July, I was offered a road bike and all the gear to get started through the amazing folks at Meat Fight, and my life has been forever changed.

NATIONALMSSOCIETY.ORG | 1-800-344-4867

“...IT GAVE ME HOPE THAT NOT ONLY COULD I SURVIVE, BUT THRIVE WITH MS. IT GIVES ME ENERGY TO RUN, NOT WALK. THE NARROW ROAD I WAS TRAVELING ON GOT WIDER. I REALIZED I COULD DO ANYTHING WITH A BODY IN MOTION AND A GREAT SUPPORT TEAM AT MY SIDE.”

This bike has given me the confidence I didn’t know existed to do the things that I didn’t know were possible. Even though I had been taking better care of myself (gym, nutrition, etc.), I hadn’t really been pushing myself because I thought I was at the maximum capacity. Now I can look at myself each day with amazement about what I’ve been able to accomplish. My MS is never going to win. It has also given me friends and a support system that is immeasurable. One of my fellow Meat Bike recipients, Angie, put it best when she said, “It gave me hope that not only could I survive, but thrive with MS. It gives me energy to run, not walk. The narrow road I was traveling on got wider. I realized I could do anything with a body in motion and a great support team at my side.” Our Saturday morning rides have become my therapy. The friends I have made through this journey are life long. I am a better person because of these people. Bike MS: Sam’s Club Round-Up Ride will take place this year on my 9th MS Anniversary. Nine years of living with this scary disease. If you would have asked me nine years ago if I thought it was possible for me to ride a bike for two days, I would have laughed in your face. Even two years ago I would have made

a silly joke and walked away, but this year is going to be amazing. I’m in the best shape of my life. I am proud of myself, and am doing things that I had never imagined myself doing.

I think I let fear of MS take over my life for so long and now there is nothing stopping me. I don’t know if I’ll be able to complete all 163 miles of the ride on April 30-May 1, but I will try my hardest to finish. The only deal we make with Meat Fight for receiving the bike is to just at least cross the start line of Bike MS that calendar year. I know I can do more; I want to be able to prove to myself and to others that everything IS possible. It may not be perfect, or the way the way I imagined it, but the journey has been so worth it. I can’t wait to see my husband and two sons waiting for me at the finish line. ■ If you live with MS and are interested in taking on the Meat Bike Challenge, email Alice at alice@ meatfight.com or visit meatfight.com. Find a Bike MS event near you at bikeMS.org.

EVENTS

MS CONNECTION: SPRING 2016

MAKING CONNECTIONS THROUGH BIKE MS CHAMPIONS

Bike MS is the National MS Society’s largest fundraising event. To date, Bike MS cyclists, volunteers and donors have raised over $1 billion so people affected by MS can live their best lives as we stop MS in its tracks, restore what’s been lost and end MS forever.

Whether you ride, donate, volunteer or share your story, we can all connect through Bike MS. One way we make this connection stronger is by sharing the diverse story of who we are and what we do. We call these stories Bike MS Champions. The 2016 South Central Bike MS Champions highlight the many different faces of MS and the ways in which the Society works to help those with MS live their best lives. They are an inspiration to all. Look for their stories at all nine of South Central’s Bike MS rides.

NATIONALMSSOCIETY.ORG | 1-800-344-4867

AMANDA PEOPLES

DIAGNOSED, 2008

“Most people do not realize that MS can affect children as well as adults. I began having MS symptoms at the age of 13, and it took more than three years for me to receive the correct diagnosis. Every day presents its own challenges. Migraines and joint and nerve pain are part of my life. In spite of this I try to stay positive. If what I go through helps even one person, and gives them hope for another day, I would go through it all again in a heartbeat.”

FRAN ZIMMERMAN AND KAY SCHRECK DIAGNOSED, 2001

Fran: “Being a caregiver means having to adapt. We have to adapt the house so it is more accessible, and most days I drive her to and from work. Being a caregiver to Kay has taught me there is no limit on my love and care for her.” Kay: “No matter the challenges I face, Fran is there to try and make things just a little more bearable. We face my challenges together. Fran would tell you she wouldn’t have it any other way. I wouldn’t want to face MS with anyone else, either.”

17 CHANNING BARKER

DIAGNOSED, 2008

“Multiple sclerosis altered my life in ways I did not ever anticipate, but it has certainly opened many doors of opportunities and taught me many lessons. I try to give back in many ways – participating with Walk MS, reviewing scholarship applications and spreading awareness, but my main work with the Society is in advocacy. I love working with the other activists because whether they are a doctor, care partner or patient, we are all united with the same goal: to address the daily challenges of living with MS and find a cure.”

JOCELYN BLACKWELL DIAGNOSED, 2008

“In 2006, I was in Iraq on my first tour of duty as a physician in the Army when I developed Optic Neuritis. After my second tour, I finally received the official diagnosis of multiple sclerosis. I have learned that there are many other veterans like me who have been diagnosed with MS and classified as service-related. The National MS Society is collaborating with the Department of Veteran’s Affairs MS Centers of Excellence to support improved care and support services for veterans with multiple sclerosis and their families. As an MS activist, I am able to share my story and advocate for federallyfunded research dollars and support for other veterans like me.”

EVENTS

JOHN WILLIAMS

DIAGNOSED, 2004

“In 2004, I had just graduated law school and was in the throes of studying for the bar exam when MS became a part of my life. A year later, my sister surprised me by getting a team together for Walk MS. It was my introduction to the amazing fellowship of the National MS Society and the tremendous benefits of participating in Society events. It is an opportunity for so many incredible people to come together, whether as family, friends or strangers, and work together towards a common goal of defeating multiple sclerosis.”

MS CONNECTION: SPRING 2016

MARIO MARTINEZ

DIAGNOSED, 1996 “Multiple sclerosis altered my life in ways I did not ever anticipate, but it has certainly opened many doors of opportunities and taught me many lessons. I try to give back in many ways – participating with Walk MS, reviewing scholarship applications and spreading awareness, but my main work with the Society is in advocacy. I love working with the other activists because whether they are a doctor, care partner or patient, we are all united with the same goal: to address the daily challenges of living with MS and find a cure.”

“...I HAVE NOT ONLY FOUND AN MS COMMUNITY, I FOUND A PLACE WHERE I TRULY FEEL THAT I AM MAKING A DIFFERENCE.” ~ M A X I N E C .

MAXINE COOPER

DIAGNOSED, 2004

“MS has changed my life in so many ways, but it is what you make of it and how you face it that counts. I was diagnosed in 2004 and after some time had to retire from a long career at Bank of America in 2011. My pace of life changed. Instead of solely focusing on work, I began spending more time with my family and found a new sense of purpose through volunteering with the Society. I have not only found an MS community, I found a place where I truly feel that I am making a difference.”

NICOLE LEMELLE

DIAGNOSED, 2000 “For year, MS was something I could work around, but eventually it progressed and dramatically altered my way of life. I’ve had to toil through rising frustration and continue to find acceptance with each change that takes place. My advice for anyone living with MS is to remember you can still do whatever you like to do. Since my diagnosis I’ve created a website, mynewnormals.com, to educate those who do not understand MS, to reassure people with similar challenges and to inspire everyone to live their best life. Because of the National MS Society, no one has to fight this battle alone.

NATIONALMSSOCIETY.ORG | 1-800-344-4867

BE A HERO

MEDICINE

MS CONNECTION: SPRING 2016

SOUTH CENTRAL CHAPTER

PARTNERS IN MS CARE The National MS Societyâ&#x20AC;&#x2122;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 Partners in MS Care:

FINDING THE RIGHT PROVIDER AND LEARNING TO ADVOCATE FOR THE CARE YOU NEED IS IMPORTANT.

Suzanne Gazda, M.D. Suzanne Gazda, M.D. is a board certified neurologist with over 25 years experience practicing medicine. Dr. Gazda attended medical school and completed her residency at the University of Texas Health Science Center San Antonio. In addition to her medical degree, Dr. Gazda holds a Doctor of Pharmacy degree. She is the medical director for the Neurology Institute of San Antonio and Integra Clinical Research, LLC, VISTA Infusion. She has several publications, is involved in many professional societies and is the President and Co-Founder of Hope for Humans. She serves on the Medical Advisory Board for Your MS Compass, an online support, education and resource center.

Top row (left to right):Anabel Frye, Raegan Jordan, LVN, Crystal Torres, MA, Georgette Johnson; Bottom row (left to right):Bianca Aguillon, Melissa Langford, Vanessa Gomez, CMA, Suzanne K. Gazda, MD, Celine Montez, CMA, Melody Molina, Art Hahn

NATIONALMSSOCIETY.ORG | 1-800-344-4867

Benjamin Greenberg, M.D. Dr. Benjamin Greenberg received his Bachelor of Arts degree from Johns Hopkins University and his Master of Health Science degree in Molecular Microbiology and Immunology from the Johns Hopkins School of Public Health. He attended medical school at Baylor College of Medicine in Houston, Texas. Then he completed an internship in Internal Medicine at Rush Presbyterian-St. Luke’s Medical Center before going onto his residency in Neurology at The Johns Hopkins Hospital in Baltimore, MD. He then joined the faculty within the division of Neuroimmunology at Hopkins and became co-director of the Transverse Myelitis Center and director of the Encephalitis Center. In January 2009, he was recruited to the faculty at the University of Texas Southwestern Medical Center where he was named Deputy Director of the Multiple Sclerosis Program and Director of the new Transverse Myelitis and Neuromyelitis Optica Program. He founded and co-directs the Pediatric Demyelinating Disease Program at Children’s Health – Children’s Medical Center. He currently serves as director of the Neurosciences Clinical Research Center at the University of Texas Southwestern.

21 Lana Harder, PhD, ABPP

Dr. Lana Harder completed her doctoral training at the University of Texas at Austin in 2006. After completing an internship at the Kennedy Krieger Institute and Johns Hopkins School of Medicine in 2006, she completed her postdoctoral fellowship training in Pediatric Neuropsychology at Texas Children’s Hospital and Baylor College of Medicine in 2008. She came to Children’s Health – Children’s Medical Center (CMC) in 2008 and serves as a Pediatric Neuropsychologist and Assistant Professor of Psychiatry and Neurology and Neurotherapeutics at UT Southwestern. She is board certified in Clinical Neuropsychology and is a board certified Specialist in Pediatric Neuropsychology. Dr. Harder is the CoDirector of the CMC Pediatric Demyelinating Diseases Program. She also serves as the Neuropsychology Training Director and is on the Board of Directors for the Association of Postdoctoral Programs in Clinical Neuropsychology (APPCN). Dr. Harder participates in the clinical and research supervision of doctoral students and fellows. Primary areas of research include cognitive and psychosocial outcomes associated with pediatric demyelinating diseases including multiple sclerosis, transverse myelitis, acute disseminated encephalomyelitis and neuromyelitis optica.

To learn more about Partners in MS Care in your area, please visit nationalMSsociety.org or call 800-344-4867, option 1.

RESEARCH

MS CONNECTION: SPRING 2016

NATIONAL MS SOCIETY STUDIES REVEAL EMPLOYMENT CONCERNS FOR PEOPLE WITH MS—WEBINARS & TELELEARNINGS EXPLORE JOB ISSUES

JOSEPH, DIAGNOSED 2008 EVENT PLANNING PROFESSIONAL

SUMMARY n

A new study funded by the National MS Society surveyed nearly 2,000 people with MS, revealing concerns including understanding the Affordable Care Act and the Americans with Disabilities Act, requesting accommodations at work and disclosing MS. A second survey administered to this group revealed that employment status and job satisfaction correlated with improvements in quality of life.

The teams (led by Dr. Phillip Rumrill Jr. from Kent State University, OH, and Dr. Malachy Bishop of the University of Kentucky) have published results in the journal Work.

The National MS Society connects people affected by MS to important employment resources, as does the U.S. Department of Labor’s Office of Disability Employment Policy.

NATIONALMSSOCIETY.ORG | 1-800-344-4867

BACKGROUND: Multiple sclerosis can affect a person’s family life, career, standard of living and quality of life. Investigators funded through the National MS Society’s Health Care Delivery and Policy Research Program study such issues and provide data that can serve as the basis for influencing public policy and offering people with MS and their families practical ways for improving the quality of their care and the quality of their lives.

MULTIPLE SCLEROSIS CAN AFFECT A PERSON’S FAMILY LIFE, CAREER, STANDARD OF LIVING AND QUALITY OF LIFE.

about MS and employment. First, less than 40% of respondents were paid employees at the time of the survey, although 98% had a history of being employed and 82% were working at the time of their diagnosis with MS. Six concerns were labeled as “employment weaknesses,” meaning that the respondents were not satisfied with current employment policies and practices in these areas: n

Professor Phillip Rumrill, PhD (Kent State University) was funded by the Society to conduct a survey to explore whether The Americans with Disabilities Act (ADA) had improved employment issues, including discrimination and quality of worklife, for people with MS. The ADA exists in part to reduce discrimination against people with disabilities and to promote retention of people with disabilities in the workforce.

THE STUDIES:

In one study, the researchers administered a survey to 8,000 people who were recruited through nine chapters of the National MS Society. Of these, 1,924 people returned the questionnaire, which included 98 items on demographics, illness-related questions, and 38 employment concerns. The results highlight important information

understanding the Affordable Care Act (which provides health insurance coverage for Americans with pre-existing conditions and removes annual and lifetime caps) knowing how to discuss job accommodation needs with employers being able to request a review of accommodation needs without fear of retaliation understanding the employment protections in the Americans with Disabilities Act

the possibility of reassignment to other jobs in the same company (this is considered a last resort after all other accommodation strategies have been used, but is often met with resistance by employers)

disclosing disability status

The team makes several suggestions for addressing these concerns. For example, they comment that “all Americans working with MS” need to understand the provisions of the Affordable Care Act for people with MS – that they cannot be denied coverage due

RESEARCH

to a pre-existing condition and do not face a lifetime “cap” to coverage. They also suggest that rehabilitation professionals work closely with employers to determine whether accommodations will enable them to stay in current jobs; if reassignment is necessary, support should be provided to help the worker adjust to the new job and determine if additional accommodations are necessary. In a second study, researchers administered another questionnaire to the same group to determine if there were relationships between quality of life and illness, employment and psychosocial factors. According to the responses, a higher quality of life was reported with increased education levels, employments status and job satisfaction. The authors comment that vocational rehabilitation may improve quality of life for people with MS and that this type of rehabilitation appears to be underutilized.

NEXT STEPS:

The National MS Society connects people affected by MS to the individuals, information and resources they need to move their lives forward. Making these connections can start to address the findings of these studies. The Society provides important resources to people with MS on employment, including: n n

a guide to disclosure decisions

a practical guide to obtaining accommodations in the workplace

a video series/toolkit for people with MS on managing MS in the workplace

a video for employers on managing MS in the workplace

MS CONNECTION: SPRING 2016 n

extensive information about the Affordable Care Act, including considerations most important to people affected by MS a guide to how the Americans with Disabilities Act provides protection to people with MS

Learn more about these resources by visiting the Society’s website at nationalMSsociety.org or contacting an MS Navigator at 800-3444867, option 1. In addition to these resources, the Society also has launched several webinars & telelearnings focusing on employment; view them at nationalMSsociety.org/telelearning. The U.S. Department of Labor’s Office of Disability Employment Policy also provides a wealth of resources through its Job Accommodation Network, including specific resources for people with MS. People with MS also can contact Vocational Rehabilitation Agencies in their states for more information on services such as vocational counseling, training, and job search assistance. Learn more about the latest in research by visiting nationalMSsociety.org/research

WEBINAR & TELELEARNING SERIES

SUSAN DIAGNOSED IN 1988

BROOKE DIAGNOSED IN 2009

WILLIAM (LEFT) DIAGNOSED IN 2002

Building Your Wellness Strategies A collaboration of MS experts will help you build strategies to live your best life with MS. Each free program features two presenters with time for Q&A. Join us online or by phone on topics including: • Exercise & Cognition • Employment

(4 different topics)

• Treatment Decisions • Research Updates

• Traveling with MS

• Stress & Relaxation

• Managing Spasticity • Mood

• Health Insurance

• Tips for Support Partners & Families • Diet & Nutrition • Sleep

Calls are held on the second Tuesday of each month from 7 - 8:15 p.m. CST/ 6 - 7:15 p.m. MST All calls are recorded and available for playback.

BE SEEN

MS CONNECTION: SPRING 2016 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!

LANE FROST AWARD

FLAVORS OF AUSTIN Pro Football Hall of Fame member, Earl Campbell (center), greets attendees at Flavors of Austin, sponsored by Biogen. Earl and his son, Tyler, hosted their annual fundraising event on March 5 to support ProPlayer Foundation and the National MS Society’s Scholarship program.

The National MS Society presents the 26th anniversary of the Lane Frost Award to Cleo Hearn (far right), founder of the Cowboys of Color Rodeo. Present to honor Cleo included (left to right) Fallon Wynne Way, Texas Sports Hall of Fame Inductee Walt Garrison and Society staff member Shannon Nelson.

SOUTH CENTRAL CHAPTER

WINTER PHOTOS

EVERYONE WHO WANTS TO DO SOMETHING ABOUT MS CAN FUEL PROGRESS

VIP MEET AND GREET Golden Circle members in Houston attended a VIP meet and greet with Dr. Elliot Frohman before joining more than 300 MS supporters to hear a research and wellness panel at the Houstonian Hotel on Jan. 25. Attendees included (left to right) Roberto Iglesias, Barbara Iglesias and Society staff member Meredith Byrnes.

27 The 4th Annual Strike Out MS Family Fun Day was held Feb. 27 in Broken Arrow, OK to raise awareness and funds for MS. The event included a scrimmage between high school rivals Broken Arrow and Union and raised more than $2,000.

STRIKE OUT MS

CHEON ON THE MOVE LUN

STATE ACTION D AY -

Celebrating the success of On the Move Luncheon Baton Rouge on Feb. 24 is (left to right) Luncheon Chair Connie Smith, Person on the Move Joey Crifasi, Society staff member Nancy Kritikos, Keynote Speaker Dr. Nancy Monson, Emcee Diane Deaton, and David Ogra from this year’s Company on the Move, The Dow Chemical Company.

STATE ACTION DAY - OK MS Activists gathered at the New Mexico and Oklahoma Capitols for State Action Day earlier this year in order to share their story and engage their legislators in important discussions about the issues that affect people with MS, like access to prescription drugs during an insurance appeals process. State Action Days are planned for Louisiana on April 6 and Arkansas on April 20.

GOLDEN CIRCLE

Golden Circle members, South Central Board of Trustees and South Texas Community Leadership Council members enjoying a tour of Dr. Thomas G. Forsthuber’s lab at The University of Texas San Antonio on Feb. 10.

DIY

MS CONNECTION: SPRING 2016

GORE WALK

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.

After the Walk: MS Muskogee was combined with a larger Walk MS event, Shelly Sheffield’s friends still yearned for an event to raise funds for MS in their local community. So on October 17, 2015, Shelly and 200 supporters laced up their sneakers and held the inaugural Gore Walk. This DIY walk raised $10,000 and brought the Gore, OK community together through the support of local businesses, volunteers and fundraisers. Shelly has lived with MS for 26 years and is thrilled to see the continuation of an event that has meant so much to her throughout the years. n

SHARKY’S BAR & GRILL

After Gwenna and Amanda purchased Sharky’s Bar & Grill in North Texas, they decided to carry on its philanthropic roots and host a variety of fundraising events to benefit the National MS Society in 2015. They started with Sharky’s annual golf tournament and chili cook off and then added a festive tamale party in December. Through the success of these three events and an additional donation from Sharky’s, the bar was able to present a $15,000 check to the Society on December 15, 2015. It was a proud moment for all who participated in 2015’s DIY fundraising events, especially Gwenna who has friends living with MS. n

NATIONALMSSOCIETY.ORG | 1-800-344-4867

RILEY ROUND UP FOR MS Dec. 5, 2015 marked the fourth annual Riley Round Up for MS in Denison, Texas where youth livestock exhibitors and their families from Arkansas, Oklahoma and Texas exhibited 167 head of cattle and raised $8,500 to support people living with MS. This DIY event not only raises money for MS, but gives youth exhibitors the opportunity to work with their animals before the upcoming regional and national stock shows. Riley Round Up for MS founder, Jim Riley, is thrilled with the continued growth of the event and its impact on the MS community. Jim is looking forward to another exceptional year of livestock, world class judges and community support at the fifth annual edition of Riley Round Up for MS scheduled for Dec. 3, 2016. n To learn more about DIY Fundraising, visit nationalMSsociety.org/diy

OFF MY WAVE. O cean B ea c h nat i ve an d lo c al s ur f le ge n d Ste ve B e t t i s wa s diag n o s e d w i t h MS in 20 0 6 . A lt h o ug h s ur f ing i s s t ill ce nt r al to hi s lif e, h e ha s n’ t b e e n ab le to ge t o u t o n t h e wate r in 10 year s . Fo r a man w h o s e dail y r o u t in e alway s in c lu d e d a f e w wave s , m o r e t han a d e c a d e o u t of t h e s ur f i s ju s t to o lo ng . T hi s i s w hy t h e Nat i o nal MS S o c ie t y team e d up w i t h hi s b u d d y Ro b e r t “ W ing nu t ” Weave r an d u s e d v ir t ual r eali t y to ge t Ste ve ba c k o n hi s wave . S e e t h e ir e x p e r ie n ce an d f in d o u t h ow yo u c an s har e yo ur s at W e A r eSt r o n g e rT h a n M S .o r g .

Together We Are Stronger

GET CONNECTED

MS CONNECTION: SPRING 2016 4/12- WEBINAR: Myelin, Movement and the Mind: Hot Topics in MS Research nationalMSsociety.org/telelearning

4/16- WALK MS: Las Cruces, NM; Shreveport (Bossier City, LA); Southwest Oklahoma (Lawton); Northwest Oklahoma (Enid) walkMS.org

4/16 -17 BP MS 150: Houston – Austin, TX BPMS150.net

4/10 -16 VOLUNTEER

APPRECIATION WEEK nationalMSsociety.org

GET CONNECTED

CALENDAR APRIL 4/2-

WALK MS: Corpus Christi, TX; El Paso, TX; Fort Worth, TX; New Orleans, LA walkMS.org

4/6-

2016 LOUISIANA STATE ACTION DAY MSlouisiana.org

4/9-

WALK MS: Albuquerque, NM; Amarillo, TX; Central Arkansas (Little Rock); Dallas (Addison, TX); Permian Basin (Odessa, TX); Tulsa, OK walkMS.org

4/20- 2016 ARKANSAS

STATE ACTION DAY MSarkansas.org

4/30

WALK MS: Baton Rouge, LA; Central Oklahoma (Mustang); Northeast Arkansas (Jonesboro); San Angelo, TX walkMS.org

4/30- BIKE MS: SAM’S CLUB 5/1 ROUND-UP RIDE Frisco to Fort Worth bikeMSdfw.org

MAY DINNER OF CHAMPIONS Midland, TX MStexas.org 5/6-8- CAMP CAN DO: Burton, TX

5/5-

bikeMS.org

NATIONALMSSOCIETY.ORG | 1-800-344-4867 5/7-

WALK MS: Lubbock, TX Northwest Arkansas (Fayetteville) walkMS.org

5/10- WEBINAR: Stress Management & Relaxation nationalMSsociety.org/telelearning

5/20- ON THE MOVE LUNCHEON New Orleans, LA MSonthemoveluncheon.org

5/25- WORLD MS DAY worldmsday.org

5/27- OFFICE CLOSURE South Central offices close at noon for Memorial Weekend

EXIT STAGE NEVER.

5/30- OFFICE CLOSURE South Central offices closed for Memorial Day

JUNE 6/5-

BEEF-A-THON Amarillo, TX beefathon.org

6/14- WEBINAR: Traveling with MS nationalMSsociety.org/telelearning

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.

Amy Meisner was diagnosed with MS in 1997. For someone who has always danced, MS would seem like the end. But for Amy, it means the star t of a new chapter. She’ll never leave the floor, still dances from her wheelchair, and is a great choreographer. Embracing Amy’s undying passion, the National MS Societ y teamed up with LaTonya Swann to create an entirely new and inspired dance experience through vir tual realit y. See their experience and find out how you can share yours at WeAreStrongerThanMS.org.

Together We Are Stronger

NON-PROFIT ORGANIZATION U.S. POSTAGE PAID City, ST Permit # (No.)

National MS Society | South Central Chapter 8111 North Stadium Drive, Suite 100 Houston, TX 77054

D IN 2012

MISSY, DIAGNOSE

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.

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