SUMMER 2016 SOUTH CENTRAL CHAPTER
MS CONNECTION NEWSLETTER
PASSING OF THE TORCH:
A NEW GENERATION BRINGS BACK THE YELLOW ROSE GALA - P.12
INSIDE THIS ISSUE GET CONNECTED Calendar p.30
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CONGRATS 2016 SCHOLARS
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LOCAL ACTION WITH GLOBAL IMPACT
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YOU CAN ADVANCE MS RESEARCH
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GET OUT THE VOTE
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WELCOME
MS CONNECTION: SUMMER 2016 TOGETHER WE ARE STRONGER
MAKING A GREATER IMPACT
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: The Wynne Family brings back the Yellow Rose Gala
More than 2.3 million people worldwide currently live with MS and more than half live with a progressive form of MS. Each day, progressive MS takes things away from people: vision, mobility, cognition, ability to work, and independence. Despite advances in other forms of MS, there are no treatments for progressive MS. Progressive MS lacks a single, identifiable disease pattern. As a result, researchers lack the knowledge needed to accelerate progress. They lack tools to test how and why MS progresses, and too few new treatments are tested as a result of slow and costly trials. People with progressive MS need solutions now. The South Central Board of Trustees came together for this urgent appeal, raising more than $100,000 to support a matching gift by fellow trustee Karen Chesney Miles for the Yellow Rose Gala in Dallas. Their $100,000 commitment turned into more than $210,000 raised to support progressive MS research through the International Progressive MS Alliance. Members of the South Central Board of Trustees can proudly say they are initial funders of this global initiative. This international collaboration includes leading scientific MS experts, as well as a shared commitment from 15 MS organizations (and counting) worldwide. The International Progressive MS Alliance met in San Francisco in May to better understand disease progression so we can identify and test treatments; design shorter, faster trials that measure patient outcomes; conduct trials to test agents; and develop and evaluate new therapies to manage symptoms. Your participation in fundraising events such as Bike MS, Walk MS, MuckFest MS and On the Move Luncheons makes a difference and are advancing solutions for progressive MS. You are making connections and raising awareness by being an MS Ambassador, organizing DIY events, volunteering your time and skills, and advocating for individuals living with MS. Together we are making a greater impact. Together we are stronger. Sincerely,
Mark Neagli , South Central Chapter
May 30, 2016
SOUTH CENTRAL CHAPTER
OFFICE LOCATIONS ARKANSAS
TEXAS
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
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® 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.
2016 SCHOLARS
MS shouldn’t stand in the way of an education. The National MS Society’s scholarship program exists to help highly qualified students who have been diagnosed with MS or who have a parent with MS achieve their dreams of earning a college education. Support offered is more than just financial; the Society facilitates connections between the scholars, offering peer support, volunteer and mentoring opportunities. Thanks to the generosity of donors, the National MS Society South Central Chapter was able to fund $189,000 in scholarships in 2016, making education possible for 143 new and returning college students. Congratulations to all of our 2016 Scholars*:
NEW SCHOLARSHIP RECIPIENTS Alexis Ansa Pabon Hewitt, TX Kayla Bahr Austin, TX Kalah Banks Glenn Heights, TX Katerina Barrack Tulsa, OK Athena Black Tulsa, OK Chantal Blanton Houston, TX Natasha Cabarubio Shreveport, LA Maria Canales San Antonio, TX Sarah Cantrell Katy, TX Karleen Cass New Orleans, LA
Briuna Clark North Little Rock, AR Cameron Cohen Keller, TX Mahalee Conway Farmington, NM Nicholas Cunningham Rogers, AR Alexandria Davis Hurst, TX Kyndall Davis Spring, TX Aaron Felderhof Gruver, TX Harrison Foltz New Braunfels, TX Briana France Cedar Park, TX Caitlyn Franklin Humble, TX Tiffany Goldsmith Newalla, OK
Alyse Gonzalez San Antonio, TX Daniela Guerrero San Antonio, TX Jacob Guidry Lake Charles, LA Allison Hunt Dewey, OK Jasmine James Ponchatoula, LA Kristen Jares West, TX Fawaz Khammash Houston, TX Kendall Kyle Houston, TX Brianna Limon Port Lavaca, TX Megan Madewell Midland, TX Kenya Maeshack Shreveport, LA
NATIONALMSSOCIETY.ORG | 1-800-344-4867
Emily Mailman Dallas, TX Anoosha Mardani-Kamali Arlington, TX John Martinez Mission, TX Jorge Maturano Wylie, TX Anna Maulsby College Station, TX Nathan Meneses Kyle, TX Kayla Millsap Quinlan, TX Lauren Mora Dallas, TX Jalilah Muhammad Baton Rouge, LA Lindsay Nelson Plano, TX Emiley Novak Springtown, TX Samantha Padilla Jarales, NM Cody Patton Albuquerque, NM Lorena Pena Palmhurst, TX Bryan Perry Houston, TX Shae Pfenning Hobart, OK Alexis Phoenix Missouri, TX
Dayna Pienta Kileen, TX Shelby Pogue Edmond, OK Alexandra Pratt El Paso, TX Rachel Roach Tomball, TX Jake Rosario Broken Arrow, OK Ethan Sartor Abilene, TX Armahni Shields Okmulgee, OK Amber Simpson Schertz, TX Joshua Smith Lubbock, TX Sarah Smith Wichita Falls, TX Alexis Sonnier Mandeville, LA Cheyenne Timmons Pasadena, TX Jaxson Varni Plano, TX Tayler Weathers Fort Worth, TX Kathryne Wenck Chalmette, LA Elizabeth Winkler Little Rock, AR
SCHOLARSHIPS
2016EVENTS
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RENEWING SCHOLARS
Kasey Ammons Wharton County Junior College Wharton, TX Richard Ammons Texas State University San Marcos, TX Maranda Bailey Texas A&M University College Station, TX Kayla Ball University of Arkansas Fayetteville, AR Austyn Carter University of Texas Austin, TX Rachel Cendrick Baylor University Waco, TX Allison Cook Oklahoma State University Stillwater, OK Macy Cowart Texas A&M University College Station, TX Lauren Davis Harding University Searcy, AR Kendall Dobbins University of Oklahoma Norman, OK Charnyce Doman Texas Southern University Houston, TX
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SCHOLARSHIP
Annie Edwards University of New Mexico Albuquerque, NM Payton Efurd University of Arkansas Fort Smith, AR Leah Fitzgerald St. Edwards University Austin, TX Sasha Flowers University of Texas Austin, TX Benjamin Fowler New Mexico Institute of Mining and Technology Socorro, NM Alyssa Garcia Texas A&M University College Station, TX Sarah Garcia Texas State University San Marcos, TX Sierra Gillette University of Oklahoma Norman, OK Lauren Hall University of Central Arkansas - Conway, AR Katherine Hensgens McNeese State University Lake Charles, LA Liza Hoeffner Nicholls State University Thibodaux, LA Alexander Joo Texas A&M University College Station, TX
MS CONNECTION: SUMMER 2016
Joy Jordan McNeese State University Lake Charles, LA Clay Lansdale Trinity University San Antonio, TX Molly Lansdale Texas Tech University Lubbock, TX Gina Litwin University of Texas of the Permian Basin Odessa, TX
Kaillyn Lewis Texas Christian University Fort Worth, TX Kortney Livingston Tarleton State University Stephenville, TX Ashley Lowery University of North Texas Denton, TX Taylor Martin Northeastern State University Broken Arrow, OK Mary Martinez New Mexico State University Las Cruces, NM Ashley Maxwell Oklahoma Baptist University Shawnee, OK Lauren Mraz Texas A&M University College Station, TX
Smythe Mullikin Southern Methodist University Dallas, TX Jacob Muntzel Austin College Sherman, TX Savanna Nelson Eastern New Mexico University Portales, NM Jessica Orr Texas A&M University College Station, TX Eugenio Padilla New Mexico State University Las Cruces, NM Jordan Pellegrini Stephen F. Austin State University Nacagdoches, TX Brianna Poche Southeastern Louisiana University Hammond, LA Brandie Preuss Tarleton State University Stephenville, TX Jordyn Pulliam Arkansas Tech University Russellville, AR Julia Purrington University of New Mexico Albuquerque, NM Zachary Quick Texas A&M University College Station, TX
NATIONALMSSOCIETY.ORG | 1-800-344-4867
Ashley Reeves University of Oklahoma Norman, OK Lindsay Roach Fort Lewis College Durango, CO Laura Rodriguez Houston Community College Houston, TX Daniel Romo University of Oklahoma Norman, OK Ryan Scott University of Texas Austin, TX Haley Sellers Hardin-Simmons University Abilene, TX Loryn Setterquist Texas A&M University College Station, TX Wyatt Stanford University of Oklahoma Norman, OK
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Michael Stanley University of Texas Austin, TX Mariah Starr University of Texas Arlington, TX Jessica Stevens Webster University Webster Groves, MO Alexis Stitt Texas A&M University College Station, TX Kyle Varni University of Texas Austin, TX Taylor Watson Lyon College Batesville, AR Lauren Whitney Texas A&M University College Station, TX Emily Zeller Louisiana State University Baton Rouge, LA
Learn more about the 2016 scholars, resources for students living with MS, and the 2017 scholarship program, including application details, timeline, qualifications and guidelines, by visiting nationalMSsociety.org/scholarship. The scholarship program would not exist without the generosity of our donors. To learn more about how you can support the scholarship program, please contact Shannon Nelson, shannon.nelson@nmss.org or 469-619-4704.
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VOLUNTEERS
MS CONNECTION: SUMMER 2016
LOCAL ACTION WITH GLOBAL IMPACT: THE ROLE OF THE SOCIETY’S COMMUNITY LEADERSHIP COUNCILS
BY DAVID KIM AND KELLY TULLBERG
The National Multiple Sclerosis Society is united in our collective power to do something about MS now and end this disease forever. One way we work to achieve this is through our Community Leadership Councils. Council Members are community ambassadors who connect and engage other individuals and organizations, provide leadership and support for fundraising, and increase awareness of multiple sclerosis and the services of the National MS Society. Councils in Arkansas, Louisiana, New Mexico, Oklahoma and Texas are identifying needs and opportunities in their community in order to help us achieve our goal of changing the world for people affected by MS.
ENGAGING LEADERS
The National MS Society believes that every individual living with MS should have access to high quality healthcare. In order to increase access to MS specialty care, the North Texas Community Leadership Council placed a priority on engaging health care providers in their area to ensure they have the tools and information they need to enhance the care for their patients living with MS. “We wanted to take a proactive approach to not only raise awareness, but also create new connection points in the community. We figured the best way to reach people living with MS is to
The Trotter YMCA in Houston now provides adaptive aquatics thanks to the work of the Community Leadership Council. partner with healthcare providers serving them,” said Council Member Bob Wagner.
The Houston Community Leadership Council placed a priority on expanding wellness options specifically for individuals living with MS. “We determined we needed a partnership with an organization that has the physical facilities, staff and desire to help those living with MS,” said Council Member Harold Harris. “Additionally it needed to be affordable and accessible. The YMCA quickly came to mind.” By working together with the Greater Houston YMCA, the Council was able to secure a year-long partnership bringing adaptive yoga and aquatics classes to the Trotter YMCA.
Council Member Lisa Sailor worked hard to secure the specialized MS classes and appreciates what it can do for individuals like herself in the Houston-area. “It can be very intimidating to go into a class that only includes able bodied people. Now I can feel comfortable in my abilities. I also know the instructor has been trained by the National MS Society to help me achieve the best results possible while being safe. These programs offer a close community that will also provide support and a social opportunity to meet new people dealing with similar issues. I couldn’t be more excited to be involved in this amazing partnership, and I hope to see it continue to grow.”
NATIONALMSSOCIETY.ORG | 1-800-344-4867 While North Texas and Houston have looked at partnering with outside individuals and organizations to bring support to the MS community, the New Mexico Community Leadership Council is looking at how to build support from within. In June, the Council held a social event to engage with community leaders and volunteers, and members were highly encouraged by the response of attendees. Leadership Council Chair Todd Bisio said, “I think we already have a great team, but we also want to expand and broaden our bandwidth to bring in people with unique skills and talents.” Engaging leaders with different expertise, knowledge and connections in the community helps ensure maximum impact.
FUNDRAISING SUPPORT
Each year, the National MS Society engages more than half a million volunteers through our fundraising events. Part of the work of the Community Leadership Councils is not only to support and expand fundraising
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opportunities in their communities, but also add diversity to the fundraising options.
In Amarillo, the Council provides leadership and support to a very unique fundraising opportunity: Beef-a-Thon. Since 1970, the National MS Society has partnered with local feed lots to request donations of heads of beef to be auctioned, along with donated goods and services, during a live televised broadcast on Fox 14 (KCIT-TV). Volunteers received hundreds of calls during the three-hour broadcast, and nearly $40,000 was raised. “I’m not much of a bike rider or a walker, but I like beef,” said Council Member Duke Ward. “There’s no other event like this across the nation. I love the diversity of people that get together through Beef-a-Thon.” West Texas Community Leadership Council Chair Mark Solari has also found a unique way outside of Bike MS and Walk MS to raise funds. His DIY Dodgeball Tournament has raised $60,000 in Midland since its beginning, with more than $12,000 raised this year. “The
(Left photo:) Mark Preston and staff member Sharon Ziegler attend the first annual On the Move Luncheon in New Orleans. (Right photo:) Patti Barker meets with Rep. Mike Ritze during the Oklahoma State Action Day.
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VOLUNTEERS
MS CONNECTION: SUMMER 2016
reason behind the city-wide Dodgeball Tournament was to reach out to the young crowd. A lot of young professionals who aren’t really walkers or cyclists come out and have a great time,” said Mark.
Louisiana Community Leadership Council Member Mark Preston served as Co-Chair for the inaugural On the Move Luncheon in New Orleans this spring, an event the Council fully embraced. On the Move Luncheon is a nationwide program created to empower communities with the knowledge, inspiration, and relentless resolve to end multiple sclerosis forever. The New Orleans event welcomed 200 guests and raised more than $64,000. “We have our Walk MS and Bike MS events, but On the Move Luncheon has really allowed us to add diversity to our outreach,” he said. “This was our first year, and I hope to see it continue to succeed in years to come.”
SPREADING AWARENESS
The Society seeks to ensure that each person with MS can live their best life with more connections to information, resources and others with shared experiences. In order to achieve impact, we need to spread awareness. The Arkansas Community Leadership Council saw a need for expanded awareness in their community and sought billboard donations as a way to help. Council Member Tonya Horton said, “I have always seen the power of billboard advertising, but I honestly thought it would be an unattainable goal. However, asking the right person, the right company at the right time made the difference. The owner has a connection to MS, so they were more than willing to help us.”
Because of her persistence, the Council was able to secure billboard donations to help promote Walk MS and the role of the Society in Little Rock.
(Photo:) Arkansas Council Member Tonya Horton secured donated billboards to promote the Arkansas Walk MS events this spring. Spreading awareness isn’t just about publicity. In Oklahoma, the Community Leadership Council is also working to spread awareness through advocacy. All Council Members are part of the Action Network and respond when support is needed for legislation affecting individuals living with MS. Many have also met with their representatives and shared their story to help both state and federal legislators stay informed on the impact policy can have on individuals living with MS. Council Members invite legislators to attend Walk MS and Bike MS events, as well as to attend a Council meeting to learn more about the Society and hear updates on research and issues.
“If you have a leadership position at the National MS Society, it’s incumbent upon you to take every opportunity to reach out and spread awareness, whether it is attending a State Action Day or making a connection during your regular business day,” said Patti Barker, Oklahoma Community Leadership Council Member and Co-Chair of the Government Relations Committee. Fellow Council Member Tom Teasdale took the opportunity to share his story and thank U.S. Sen. James Lankford for his support on federal issues when they happened to be traveling together on the same plane. It’s these simple interactions that can make a big difference.
NATIONALMSSOCIETY.ORG | 1-800-344-4867 One priority the Oklahoma Council has set for this year is to help get the MS community out to vote. Council Members set up tables at Walk MS events to help people register to vote and plan to do it again at Bike MS: The Road Divided in September. “There are so many important issues at the state and federal level that affect every person living with MS and every caregiver,” said Patti. “There is no other way to get your voice heard if you don’t vote. It takes away your voice if you don’t exercise your right to vote.” ■
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“I HAVE ALWAYS SEEN THE POWER OF BILLBOARD ADVERTISING, BUT I HONESTLY THOUGHT IT WOULD BE AN UNATTAINABLE GOAL. HOWEVER, ASKING THE RIGHT PERSON, THE RIGHT COMPANY AT THE RIGHT TIME MADE THE DIFFERENCE. THE OWNER HAS A CONNECTION TO MS, SO THEY WERE MORE THAN WILLING TO HELP US.”
If you are interested in learning more about how you can support the efforts of one of the nine Community Leadership Councils within South Central, please contact Kelly Moran at kelly.moran@nmss.org or 713-394-2962.
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.
REGISTER TODAY! WALKMS.ORG | 855-372-1331 THANK YOU TO OUR PREMIER NATIONAL SPONSOR AD-WalkMS-various Sizes.indd 4
3/8/16 4:03 PM
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COVER STORY
MS CONNECTION: SUMMER 2016
A NEW GENERATION BRINGS BACK THE YELLOW ROSE GALA BY KELLY TULLBERG
From the time she was born until she turned 15, Fallon Wynne Way remembers life always being focused around the Yellow Rose Gala. Established by her parents, Dee and Jimmy Wynne, shortly after her mother’s MS diagnosis, the Yellow Rose Gala was one of the most prominent social events in Dallas, netting over $5 million for MS research during its run from 1986-2001. Fallon remembers her mom’s tireless efforts to put on the event each year - all the work, preparation, phone calls, the extravagant themes and beautiful gowns.
The event was a reflection of the person who inspired it.
“Mom always had a philanthropic spirit; it was part of her soul,” says Fallon. “Everyone was her friend. She just had a magnetic personality. She was always laughing, always happy, and always positive. So many people would come up to me and say, ‘I only met your mom once but we shared such a special connection.’ That was mom. She connected.” Dee’s disease progression eventually prevented her from continuing with the gala,
NATIONALMSSOCIETY.ORG | 1-800-344-4867 but it didn’t impede the impact she made. The last gala in 2001 was a record-breaking event netting more than $2 million and featuring performances by The Eagles, Stevie Nicks and Trisha Yearwood.
People who remember the Yellow Rose Gala talk about it with nostalgia. “We always wanted to bring the gala back,” Fallon said. “My mom knew she couldn’t do it anymore, so she said it was our generation’s time, like a passing of the torch.” However, the family’s focus after 2001 was on Dee’s health, so the gala had to wait. “When she passed in 2014, there was no more excuse. This disease took this amazing spirit away from us, and we wanted to honor her and her legacy by bringing this event back. We are now more determined than ever to find a cure. My family made a vow that we’ll continue raising dollars for research until a cure is found. MS has been a part of my life from the beginning. It will continue to be until the day we can officially say it’s no longer a part of anyone’s life.” In April 2014, the Wynne family connected with the National MS Society to share their desire to bring back the Yellow Rose Gala in 2016. They wanted to ensure that 100 percent of net proceeds would go to research, and they were determined to engage and grow a committee to help them reach their goal. Coincidentally, a group of young professionals led by Charlie Burford had also reached out to the Society to share their interest in planning a gala. With their shared commitment, the two groups were brought together, and in September 2014 they held their first committee meeting to plan the 2016 Yellow Rose Gala.
The Yellow Rose Gala Foundation formed two committees to lead their efforts: a steering committee made up of young professionals, and an advisory committee consisting of long-time supporters of the organization. The
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dynamic between the two groups proved to be successful. “We ended up creating a mentor group without intending to do so,” says Shannon Nelson, Associate Vice President of Individual Giving and Leadership Events at the National MS Society. “The advisory group was able to share their knowledge and networks, teaching the steering committee the ropes of how to fundraise and take on the responsibility of a foundation. We want to be known as a place where young philanthropists can come to learn and grow. They have so much energy and are making an immense impact.” The first test came in the fall of 2015 with the committee’s first event, Boots N’ Roses.
“I AM VERY EXCITED ABOUT THE PROGRESSIVE MS ALLIANCE. IT’S GREAT TO SHARE THE WEALTH AND PUT ALL THESE MINDS TOGETHER. I DON’T CARE WHERE THE CURE IS FOUND. I DON’T CARE WHO FINDS IT. LET’S JUST FIND IT.”
Serving as a kick-off to the return of the Yellow Rose Gala and a way to keep the community engaged through the year, Boots N’ Roses attracted more than 350 attendees. It was tailored to young professionals as a way to attract them to the Yellow Rose Gala, but it turned into a fun, energetic event that engaged both past and new supporters. The way the community welcomed back the Yellow Rose Gala Foundation was overwhelming. “The Wynne family is so unique because they just purely love each other. They are in it for each other,” Shannon said. “They have such a giving spirit, and they draw people in. The community wraps their arms around them, and that’s what we saw with the return of this event.”
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COVER STORY
Through the experience, Fallon says she gained a new perspective on the work that her mom put into planning the gala, but she also felt her mom with her the whole time. “Mom’s not finished. Mom’s looking down on us and helping us from above,” she said. “So many times there were odd coincidences. A volunteer would show up just when we needed them, or a calendar date would suddenly open up that previously had been closed to us. She’s sending guardian angels to help us. She didn’t want to be mourned and have a funeral, so we didn’t have one. She viewed that our time here on earth is precious and should be celebrated and that’s what the gala has turned into, a celebration of her life.” On April 2, 2016, the Yellow Rose Gala returned in full force. Held at the Renaissance Dallas Hotel and featuring entertainment from Gloria Gaynor, the 30th Anniversary Yellow Rose Gala raised over $440,000, including $105,000 raised by Karen Chesney Miles and the National MS Society South Central Board of Trustees. Fallon served as the President
MS CONNECTION: SPRING 2016
of the Yellow Rose Gala Foundation and Chairman for the 2016 Yellow Rose Gala. It was a family affair with her father, Jimmy Wynne, husband, Wesley Way, brother, Todd Wynne, and sister-in-law, Katie Wynne, all serving on committees. In May 2016, Fallon was able to attend the meetings of the International Progressive MS Alliance in San Francisco to present a check for $210,550 for progressive MS research. “Progressive MS research is so important because there aren’t very many options out there for people right now. This can be life changing. If you fix progressive MS, I think you can cure the disease as a whole,” said Fallon. “I am very excited about the Progressive MS Alliance. It’s great to share the wealth and put all these minds together. I don’t care where the cure is found. I don’t care who finds it. Let’s just find it.” In addition to raising important funds for MS research, the return of the Yellow Rose Gala also raised MS awareness and community support. “This event reignited the Dallas
NATIONALMSSOCIETY.ORG | 1-800-344-4867
community,” said Shannon. “People who haven’t been involved in 15 years came back. There’s a renewed urgency to find a cure. This event was a great reunion, with a unique dynamic of young, new energy and longtime supporters. It was fun. It was exciting. It was engaging. The chemistry of everyone who came made the gala so memorable, and so powerful.” ■
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(Opposite page): Wesley Way, Fallon Wynne Way, Witten Way, Jimmy Wynne, Katie Wynne, Kennedy Wynne, Todd Wynne. (Above left:) Ernest Johnson, Taylor Mallia, Laura Vaccaro, Debbie Carder, Tim Coetzee, David Carder, Cyndi Zagieboylo, Shannon Nelson, Mark Meyer, Leah Weatherl, Mark Denzin, Peri Meyer (Above right) Disco Queen and Grammy Award-Winning Artist, Gloria Gaynor.
The Yellow Rose Gala Foundation’s slogan is “Finding a cure for multiple sclerosis starts with you.” Learn how you can get involved by visiting theyellowrose.org. Learn more about the work of the International Progressive MS Alliance by visiting progressivemsalliance.org.
IN MEMORIUM OF DEE YOUNG WYNNE, JANUARY 30, 1953 - MARCH 3, 2014
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COVER STORY
MS CONNECTION: SUMMER 2016
ia Gaynor
bers with Glor em M ee itt m m Co la Ga se Ro w Yello
e Way with n n y W n o l Fal Chair, Honoraryose Hunt Caroline R
Dee Wynne Courage Award Honoree, Jane Lomba rdi
Patrick Sands an Kristy Morgan d
NATIONALMSSOCIETY.ORG | 1-800-344-4867
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ALLIANCE MEETING INSPIRES HOPE FOR FALLON WYNNE WAY AND NUMEROUS SOCIETY SUPPORTERS BY HEATHER LEE
“Although answers to progressive MS didn’t come fast enough to benefit my mother,” says Fallon Wynne Way, whose mother Dee Wynne passed away in 2014, “I now have hope and confidence that we are closer than ever before to answers that will change the lives of everyone living with progressive MS today.” Fallon, who is President and Chairman of the Yellow Rose Gala Foundation in Dallas, Texas, was just one of nearly 60 supporters impacted by MS that joined the Society at the Second Annual Scientific Meeting of the International Progressive MS Alliance in San Francisco, California in May. During this pivotal two-day meeting, over 100 of the world’s leading MS experts convened to assess the challenges to progressive MS treatments and to chart a new course for speeding future solutions. Led by the National MS Society and a host of other MS Societies across the globe, the International Progressive MS Alliance was formed in 2012 with the goal of speeding treatments to people living with progressive MS. For the first time ever, these countries are now pooling their talent and resources to drive collaboration and fund the most promising research on progressive MS, without regard for geographic borders. While in San Francisco, investigators explored topics cutting across all dimensions of progressive MS including the disease process in the brain, technology, cross over with other diseases, genetics and clinical trials.
(Above) Dee and Jimmy Wynne presented the first Yellow Rose Gala donation to the National MS Society for $182,000 in 1987. (Below) This year, Fallon Wynne Way presented $210,550 to the Society and Alliance leadership in San Francisco. “To know that the global MS community is now united in pursuing solutions for people with progressive MS, gives me great confidence to support this groundbreaking work,” said Fallon, whose foundation recently raised $210,550 to support the Alliance through proceeds from the Yellow Rose Gala Foundation, an influential charity event in Dallas founded by Fallon’s mother Dee that has raised millions for MS research over the years. As with past Alliance meetings, the discussion and ideas stimulated in San Francisco will focus the research community on the key questions facing progressive MS and will continue to drive the treatment progress momentum experienced today. ■
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RESEARCH
MS CONNECTION: SUMMER 2016
CARLOS Maria Cote And Her Dog, Leiah
DIAGNOSED IN 2001
YOU CAN ADVANCE MARIA COTE AND HER DOG, LEIAH MS RESEARCH
medication through the process necessary for U.S. In her 30s, Maria Cote’sapproval. full-time work Food andlate Drug Administration
was being a mother to her three teenage children. Family in living theirwith home in There are many ways life people MS and Snohomish, Washington, busyMS for her and even family members can was advance research. her husband Don with pets, hiking and school Cote chose to participate in a clinical trial of a projects. potential MS therapy. Others have responded to That changed justideas, before her 40th birthday, surveys, shared their or participated in studies in 2000, when Cote’s general practitioner about symptom management, rehabilitation, referred her to a neurologist to investigate wellness and diet approaches, and more. the tingling in her toes and ankles. “She was running all these tests and I had no idea what Today, Cote works part-time in information she was looking for,” remembers Cote. “Then technology is the executive director of FurKidz she said itand was multiple sclerosis—which I 911 Connection, a nonprofit organization that had never heard of. I asked, ‘Is that fatal?’” provides foster care for dogs when their owners She and her neurologist discussed several are hospitalized. She also participates in Bike MS® options, all of which were injected or with her team, Swedish Babes. “I keep intravenously infused. Smyelin Cote tried three of athose positive attitude,” she says. “I feel like a strong options over the next several years, person—not that’s what like to but her fearalways—but of needles affected herImental n some of the side effects show to the outlook andworld.” she found intolerable. “I gave up,” she says. But when her neurologist mentioned an To learn how you can advance MS research, visit upcoming clinical trial for an oral MS nationalMSsociety.org/research/participate. medication, Cote felt a glimmer of hope. She volunteered in hopes that the non-needle treatment would be made available to her and others living with MS. While the study was a “lot of work,” she says it was worth it, and then some. “That I wasn’t getting poked with a needle once a week made a big difference,” she says. And her participation
helped guide the trial medication through the process necessary for U.S. Food and Drug Administration approval. There are many ways people living with MS and even family members can advance MS research. Cote chose to participate in a clinical trial of a potential MS therapy. Others have responded to surveys, shared their ideas, or participated in studies about symptom management, rehabilitation, wellness and diet approaches, and more. Today, Cote works part-time in information technology and is the executive director of FurKidz 911 Connection, a nonprofit organization that provides foster care for dogs when their owners are hospitalized. She also participates in Bike MS® with her team, Swedish Smyelin Babes. “I keep a positive attitude,” she says. “I feel like a strong person—not always—but that’s what I like to show to the world.” ■ To learn how you can advance MS research, visit nationalMSsociety.org/research/participate.
RESEARCH NEWS FROM AAN MEETING
More than 11,000 neurologists and other researchers from around the world gathered for the American Academy of Neurology’s (AAN) annual meeting held in Vancouver, British Columbia in April. Several large sessions focused on emerging therapies, myelin repair strategies, pediatric MS, and new approaches to addressing symptoms that impact the quality of life for people with MS. In most cases, studies presented here are considered preliminary. Many will be analyzed more thoroughly, and likely published in peer-reviewed medical journals. Confidence in a study’s findings is reinforced when it is repeated by others who attain similar results.
NATIONALMSSOCIETY.ORG | 1-800-344-4867 STOPPING MS
Many studies presented showed continued benefits of available therapies and longerterm safety information, as well as more evidence that early and ongoing treatment with a disease-modifying therapy has longterm benefits for controlling disease activity, delaying accumulation of disability and protecting quality of life.
Lipoic Acid for Secondary Progressive MS Dr. Rebecca Spain and colleagues (Oregon Health & Science University) reported promising results from a clinical trial of oral lipoic acid, an antioxidant supplement, in 51 people with secondary progressive MS. Antioxidants block the action of “free radicals,” which are normal by-products of bodily processes that may cause tissue injury in MS. The two-year, double-blind, randomized controlled trial compared 1200 mg daily lipoic acid to inactive placebo. The results suggested that the lipoic acid group had less brain atrophy (shrinkage) than the placebo group. Overall, the treatment was safe and tolerated, with stomach upset being the most pronounced side effect. Larger studies will be needed to fully understand the potential of lipoic acid to slow MS-related damage to the brain. People Are Being Misdiagnosed with MS
In an invited plenary talk, Drs. Andrew Solomon (University of Vermont) and John Corboy (University of Colorado) noted that other conditions are frequently misdiagnosed as MS. They noted that this occurs when the published diagnostic criteria are not applied appropriately, and when there is an over-reliance on MRI scans, which are often read by radiologists who are not trained in MS. Migraine and fibromyalgia are among conditions frequently misdiagnosed as MS. Misdiagnosis sets the stage for inappropriate use of therapies and potential for side effects.
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No Link Found Between High Salt in Diet and MS Disease Activity Dr. Kathryn Fitzgerald (Johns Hopkins University) and an international team of colleagues investigated a previously proposed link between high-salt diet and MS disease activity by leveraging urine samples gathered over five years during and after a large clinical trial. By comparing well-documented relapses, MRI and measures of disability with salt levels in the urine over five years, the team was not able to confirm a connection between a high-salt diet and MS course or activity. Another study testing a possible link between salt and MS susceptibility is summarized below. Dystel Prize Winner
Professor Claudia Lucchinetti (Mayo Clinic) was chosen by a committee of her peers to receive the National MS Society/ American Academy of Neurology’s 2016 John Dystel Prize for Multiple Sclerosis Research. She was honored with the Prize for driving advances in the neuropathology of MS – how the disease damages brain and spinal cord tissues – and translating this understanding into better care for people with MS.
RESTORING FUNCTION – MYELIN REPAIR
Myelin wraps around nerve fibers, like insulation on an electric cord. In MS the myelin is damaged, disrupting signals and making nerves more susceptible to damage that leads to progression. Myelin repair is seen as a promising approach for restoring lost function and slowing down – or even stopping – progression, and there are clinical trials of myelin repair agents going on right now in MS. Stimulating the Brain’s Self-Repair Mechanisms Dr. Ari Green (University of California, San Francisco) led a small, phase II clinical trial to test whether an oral allergy medication,
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RESEARCH
called clemastine, could promote the brain’s own myelin-repair abilities. They administered clemastine or inactive placebo twice daily to 50 people with MS and optic nerve damage for 150 days. The team measured the speed of nerve transmission in the optic (eye) nerve as an indicator that myelin repair occurred. Results suggested that nerve signaling speed increased when the participants were taking clemastine. It’s important to note that the dose exceeded the maximum recommended dose, and was accompanied by side effects including fatigue. Additional research will be needed to understand the potential benefits of this approach for treating MS. Stem Cell Therapy
Another approach to myelin repair is the transplantation of myelin repair-promoting stem cells. Advances in this approach were reported by a team led by Dr. Saud Sadiq (Tisch MS Research Center of New York), who transplanted bone marrow-derived stem cells into the spinal cord in people with progressive forms of MS in a phase 1 clinical trial. Based on preliminary findings, headache and fever were the most frequent side effects, and there were no serious adverse events reported so far (the trial has not yet been completed). There were hints that some may be responding, but the trial was not designed to detect a clinical benefit, so caution should be used when interpreting these results. The team has announced plans to advance this treatment to a phase II trial.
RESTORING FUNCTION – ADDRESSING SYMPTOMS
Research is helping to advance the recognition of, and strategies for addressing, MS symptoms such as cognitive problems, depression, pain and fatigue.
MS CONNECTION: SUMMER 2016 Does Hormone Replacement Impact Quality of Life? Since sex hormones appear to influence the onset and course of MS, National MS Societysupported Dr. Riley Bove (University of California, San Francisco) and collaborators used the Nurses’ Health Study (involving hundreds of thousands of female nurses followed over time) to look at the potential impacts of hormone replacement therapy after menopause. Among 95 participants who met their criteria, 61 had used hormone replacement and 34 had not. They found that hormone users with MS had self-reported higher physical quality of life scores than women with MS who did not use hormones after menopause. This was not found in women who did not have MS. Further research is needed to confirm this observation. Brain Games to Improve Cognition
Dr. Leigh Charvet and colleagues (New York University and the State University of New York at Stony Brook) tested a computer-based cognitive training program in 135 people with MS. Of this group, 71 people used the training program – a series of brain-training games that are continuously adapted to keep the individual challenged – and 64 played regular video games for one hour per day, five days per week, over 12 weeks. Although the “placebo” video game group logged more playing time, those in the training group showed significantly greater improvement in cognitive function, as shown by a number of neuropsychological tests. Further testing of this and similar home-based programs should increase the availability of brain games for improving cognition in MS. Cognition and Attention in Kids with MS Computer-based rehab is especially attractive for improving cognition in children. Dr. Pietro Iaffaldano (University of Bari Aldo Moro, Italy) and colleagues administered attentionspecific computerized training or unspecified
NATIONALMSSOCIETY.ORG | 1-800-344-4867 computerized training to 16 children with MS and 20 children with ADHD. The attentionspecific training improved attention in both groups, and improved processing speed and memory in the kids with MS as well. Treadmill for Mental and Physical Fitness Dr. Rebecca Spain and the Oregon team tested whether walking on a treadmill for 30 minutes, four times per week for eight weeks, would improve fitness, cognition, and fatigue in 11 people with MS. They found significant improvements in cardiovascular fitness and cognition. One participant fainted and did not complete the program, so it’s a good idea to consult a healthcare provider to find a suitable exercise program. Although small, the study adds to growing evidence that exercise can improve mental and physical fitness in people with MS. Meditation By Phone A type of meditation, called mindfulness-based intervention, is mental training aimed at reducing reactions that may worsen any pain or emotional distress. However, traveling to weekly sessions can be difficult for people with mobility issues, so Ariana Frontario and colleagues (New York University and the State University of New York at Stony Brook) tested the feasibility of delivering mindfulness training via group phone conference. They found that 25 people who underwent a six-week program improved in cognition and sleep quality, and had reduced fatigue and depression, compared with 10 people who did not complete the program. This type of “telehealth” approach may increase access to life-changing programs for people affected by MS.
ENDING MS
The cause of MS is still not known, but both genetic and environmental risk factors have been implicated for increasing the risk of developing MS. It is important to note that many people have MS risk factors and will
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never develop MS, and also that many people develop MS without having been exposed to identified risk factors. Study Complicates Idea That Dietary Salt May Trigger MS Some recent lab studies have pointed to dietary salt as a possible trigger of MS immune attacks. Dr. Marianna Cortese (University of Bergen, Norway) and researchers at Harvard assessed the intake of salt and other minerals in the Nurses’ Health Study group (involving more than 150,000 female nurses in the U.S. followed over time). None of the minerals, including salt, seem to alter the risk of developing MS. Additional research is underway to explore the possible link between salt and MS. Risk Genes in Kids with MS Dr. Lisa Barcellos (University of California, Berkley) and members of the National MS Society-supported Network of Pediatric MS Centers conducted the first genome-wide association study designed to identify genes that contribute to susceptibility of children to developing MS. The investigators reported that variants within genes identified in adult MS are also risk factors in children, suggesting that similar biological processes are involved in both groups. One of the previously identified risk factors for MS is childhood or adolescent obesity. Investigating this lead, the team found links between MS risk genes and obesity in childhood, and also overlap of some genes that confer risk of increased body mass and MS risk genes. These findings may provide clues to how inflammation is triggered and how it might be prevented. ■ Read more about the Society’s research strategy, as well as latest research news, by visiting nationalMSsociety.org/research.
MS CONNECTION: SUMMER 2016
ACCOMMODATIONS TO GET OUT THE VOTE BY: MILENA HERRING
When the Americans with Disabilities Act became the law of the land in the summer of 1990, I was probably experiencing early symptoms of multiple sclerosis and didn’t know it. I was physically active and enjoyed international travel and adventure, and sports such as hiking and cross country skiing. I lived and worked in Manhattan, traveled by subway, moved anonymously through crowded streets and retreated to my house in rural upstate NY on weekends. The only “accommodations” I concerned myself with then were the latest modern conveniences. Fast forward 11 or 12 years – I can’t remember exactly. The harsh diagnosis of MS ground to a halt almost everything I had loved to do, physically. I have always been politically active, too, and physical changes can’t halt that. I have voted in every election from local School Board Members to President of the United States since I was 18 years old. In 2002 Congress passed the Help America Vote Act (HAVA),
which established requirements for voting systems nationwide. HAVA gave everyone the right to participate in elections, including improving access to polling places and requiring accommodations for people with disabilities – like the ability to vote privately. Until I moved to South Carolina a few years ago and became active with the SC Disability Voting Coalition, I had never heard of HAVA. I’ve since learned that those of us with disabilities have the right to accommodations that allow us to vote as freely as we ever did and to maintain a level of dignity and privacy. Unfortunately many polling places are not compliant with HAVA.
In anticipation of the polls opening this November in another critical election year, I’m making sure that my officials pay attention to where and how I will vote. Headlines of broken voting machines or rigged elections are of little concern to me when I have to park two blocks away because there isn’t enough
NATIONALMSSOCIETY.ORG | 1-800-344-4867 accessible parking close by, or walk up two flights of stairs without a hand railing because there isn’t a ramp, or leave my polling place without voting because I can’t stand in line too long and no sign or poll worker communicated that curbside voting is available. This year, when I finally make it into the polling station, I will have planned ahead to know that I won’t have to use two hands to manage the voting machine while standing without my cane (or trying to find a place to put the cane because if it falls to the floor, I can’t bend over to pick it back up). I will vote!
“THOSE OF US WITH DISABILITIES HAVE THE RIGHT TO ACCOMMODATIONS THAT ALLOW US TO VOTE AS FREELY AS WE EVER DID AND TO MAINTAIN A LEVEL OF DIGNITY AND PRIVACY. UNFORTUNATELY, MAYBE POLING PLACES ARE NOT COMPLIANT WITH HAVA.” As many people have said, voting isn’t a right. It’s the right – the one right that all our other rights depend upon. Make sure your polling place meets the access and accommodation requirements of the Help America Vote Act – in advance of Election Day. It won’t cost much, if anything. And, besides, it’s the law. ■ This article originally appeared on the MSConnection.org blog.
Learn more about how you can take action, including tools to register to vote and how to ensure accessible voting locations in your community, by visiting nationalMSsociety.org/ Get-Involved/Advocate-for-Change
ADVOCACY
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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
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BE SEEN
MS CONNECTION: SUMMER 2016
DINNER OF C
HAMPIONS
STATE ACTION DAY - AR
Texas Gov. Greg Abbott presented the MS Hope Award to community philanthropist S. Javaid Anwar, President & CEO of Midland Energy Inc. and Petroplex Energy Inc., at the 2016 Dinner of Champions in Midland, Texas. The event was held at The Petroleum Club of Midland on May 5 and raised more than $214,000.
MS Activists met with Arkansas Gov. Asa Hutchinson on April 20 to thank him for supporting affordable healthcare for individuals living with MS through Arkansas Works.
SOUTH CENTRAL CHAPTER
SPRING PHOTOS
EVERYONE WHO WANTS TO DO SOMETHING ABOUT MS CAN FUEL PROGRESS
STATE ACTION DAY - LA
MS Activists show up to the Louisiana Capitol in Baton Rouge for State Action Day on April 6.
BE SEEN
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N
LUNCHEO E V O M E N TH
O
The inaugural New Orleans On the Move Luncheon inspired more than 200 people to make an impact in the MS movement. The event raised more than $64,000 and honored the legacy of Ann Hebert Howell and Champagne Beverage Company, Inc. for their commitment to helping people affected by MS. Accepting the Person On the Move Award was Ann’s husband, Dr. Monroe M. Howell, and daughter Dr. Jeanne Spedale.
CAMP CAN DO Camp Can Do, a special weekend outing where people living with more progressive MS can do whatever they desire in a totally accessible environment, was held at Camp For All May 6-8.
ON THE MOVE LUNCHEON The 2016 Houston On the Move Luncheon honoring Wendy Bedortha, Calpine Corporation and Franelle Rogers raised a record-breaking $300,000 to help create a world free of MS. The event on March 23 featured keynote speaker Kate Milliken and an all-star lineup of community leaders, including (left to right) Katie Brass, Deborah Duncan, Kate Milliken, Alicia Smith, Wendy Bedortha, Zamir Rauf, Thad Hill, Franelle Rogers, Kay Holmes, Emily Covey and Laura Dalton.
CAMP CAN DO
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BE SEEN
MS CONNECTION: SUMMER 2016
BIKE MS: SA
M’S CLUB R
OUND-UP R
IDE
Team Mind Set celebrates with friends, family members and Bike MS Champions in Sundance Square. As their signs display, no obstacle stands between this team and their accomplishments on and off the bike.
BP MS 150 Team BP lines up at the 2016 BP MS 150 starting line. Cyclists ride through Texas communities from Houston to La Grange!
BP MS 150 These little Walk MS participants hit the route to support their hero – Amber.
WALK MS:
DALLAS
HWEST OK
T WALK MS: SOU
A Walk MS participant living with MS reaches her goal of walking across the finish line with a little help from her teammates
RT WORTH O F : S M K WAL
WALK CENTRAL O MS: KLAHOMA
27 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!
KLAHOMA WALK MS: CENTRAL O
Even the dark side of the force participated in raising funds and awareness for Walk MS: Central Oklahoma.
WALK MS: NO
RTHWEST OK LA
HOMA
Participants from across northwest Oklahoma gather together for a group photo before stepping out!
WALK MS: TULSA Two angelic teams - Aliza’s Angels and Annette’s Amazing Angels – lead the charge at Walk MS: Tulsa in the historic Brady Arts District.
UGE
WALK MS: BATON RO
The River Parish A Team smiles for the camera at Walk MS: Baton Rouge!
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DIY
GO WAGYU
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.
More than 300 foodies packed Soma Sushi’s restaurant on May 15 in Houston, Texas for a celebrity chef throw down benefiting the National MS Society. Nine of Houston’s top chefs competed in Go Wagyu, a cooking competition presented by Kata Robata, Soma Sushi and The Azuma Group. Chefs were challenged to prepare their best dish using A5 Wagyu beef imported from Japan. Five judges reviewed the dishes and awarded Ronnie Killen of Killen’s Steakhouse and Killen’s BBQ with the Go Wagyu crystal trophy and a free trip to Japan. From this successful DIY fundraiser, $10,000 was raised to benefit the National MS Society in honor of their friend and industry colleague Antonio Gianola who lives with MS. n
TEJAS FITNESS CHALLENGE
Owner of TejasFit gym in San Antonio,
Texas, Dr. Alexander Hutchison, and his wife, Enjonli Hutchison, created the Tejas Fitness Challenge for athletes to showcase their physical prowess and support a cause close to their hearts. Since Enjonli’s MS diagnosis in 2007, they have been facing the daily challenges of MS together by focusing on her diet and fitness regimen. Determined to do even more, the Hutchisons decided to donate a portion of the proceeds from the Tejas Fitness Challenge to the National MS Society. On April 30, an astounding 225 athletes from 17 different gyms competed in the challenge and helped raise more than $2,000 for the Society. The Hutchisons plan to host this event for a second year in a row and look forward to its continued growth and impact on people affected by MS. n
NATIONALMSSOCIETY.ORG | 1-800-344-4867
PEDAL & SWING Perry
Pedersen
and
Rosi
Rodriguez
combined their passions for partner dancing, bicycling and raising awareness for MS and ALS into a DIY fundraiser called Pedal & Swing. On March 6, Perry, Rosi and their friend Mark started their cycling and dancing journey from San Diego, California to St. Augustine, Florida. Mark rode with them to New Mexico and then Rosi and Perry continued the excursion across five more states. Perry cycled, Rosi provided support in the camper and the two of them danced along the way in honky tonks, restaurants, rest stops and everything in between. “We hope that every mile pedaled and every dance step made will bring us closer to a cure.” Their trip concluded in St. Augustine, Florida on April 8 where Perry and Rosi celebrated a successful journey totaling 31 bicycle days, 2,860 miles on bike, 106 total dances and 49 different dance partners. Donations for the many miles traveled and hours spent partner dancing surmounted to more than $4,000 for the National MS Society and ALS Association. The funds raised are in honor of Rosi’s son and Perry’s stepson, Erik, who lives with MS, as well as their friend Eleanor who recently passed from ALS. Plans are already underway for a group Pedal & Swing event around New Mexico in 2017! n To learn more about DIY Fundraising, visit nationalMSsociety.org/diy
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EXIT STAGE NEVER. 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
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WELLNESS
MS CONNECTION: SUMMER 2016
GET CONNECTED
CALENDAR JULY
7/1-4 OFFICE CLOSURE South Central offices closed for Independence Day Weekend
7/12 - WEBINAR: Understanding and Managing Your Spasticity nationalMSsociety.org/telelearning
7/16 - BIKE MS: Cactus & Crude Ride 7/17 West Texas bikeMS.org
7/20 - EDUCATIONAL PROGRAM:
Managing Bladder & Bowel Issues in MS - Albuquerque, NM MSnewmexico.org
7/30- BIKE MS: Valero Ride the Rim 7/31 Amarillo, TX bikeMStexas.org
AUGUST 8/4-
SMARTY PANTS TRIVIA NIGHT Oklahoma City, OK MStriviachallenge.org
8/9-
WEBINAR: Mood in MS
nationalMSsociety.org/telelearning
8/19- JOURNEY CAMP: Argyle, TX 8/21 MStexas.org
8/27- BIKE MS: Pedal los Pueblos 8/28 New Mexico
bikeMSnewmexico.org
SEPTEMBER 9/2 - OFFICE CLOSURE
South Central offices close at noon for Labor Day Weekend
9/5- OFFICE CLOSURE
South Central offices closed for Labor Day
9/10- BIKE MS: Rock’n Hot Ride 9/11 Arkansas
bikeMSarkansas.org
9/13- WEBINAR:
Health Insurance
nationalMSsociety.org/telelearning
9/17- WALK MS:
Harker Heights, TX walkMS.org
9/24- BIKE MS: The Road Divided 9/25 Oklahoma bikeMSok.org
9/30- FAMILY DISCOVER CAMP: Burton, TX 10/2 MStexas.org Connect with the information, resources and individuals you need to live your best life. To learn more, contact an MS Navigator at 800-344-4867 or visit nationalMSsociety.org. Sign up to receive Society emails at nationalMSsociety.org/signup to stay updated and connected.
NATIONALMSSOCIETY.ORG | 1-800-344-4867
BE A HERO
REGISTER TODAY › BIKEMS.ORG THANK YOU TO OUR PREMIER NATIONAL SPONSORS
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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
WEBINAR & TELELEARNING SERIES
SUSAN DIAGNOSED IN 1988
• Exercise & Cognition • Employment (4 different topics)
• Treatment Decisions • Research Updates
WILLIAM (LEFT) DIAGNOSED IN 2002
• • • •
Traveling with MS Stress & Relaxation Managing Spasticity Mood
BROOKE DIAGNOSED IN 2009
• 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.
Register at nationalMSsociety.org/telelearning or call 1-800-344-4867.