Summer 2013 MSConnection: South Central
MSConnection, a free magazine for the National MS Society's South Central states (Arkansas, Louisiana, New Mexico, Oklahoma and Texas). In this summer issue, articles on camp for children with MS, remembering MS Ambassador Annette Funicello, MS Trail Ride, Art Bike Tulsa, new research developments, personal stories and more.
M o v i n g T o w a r d A W o r l d F ree o f M S SUMMER 2013 CHAMP CAMP: A CAMP OF Heroic In this issue: Proportions Making Connections... and a Difference! Remembering Annette Funicello MS Awareness Week Makes Strong Impressions Cowboying Up for the Annual MS Trail Ride If You or Someone You Know Has MS Studies show that early and ongoing treatment with an FDA-approved therapy can reduce future disease activity and improve quality of life for many people with multiple sclerosis. Talk to your health care professional or contact the National MS Society at nationalMSsociety.org or 1-800-344-4867 to learn about ways to help manage multiple sclerosis and about current research that may one day reveal a cure. The official magazine of the National Multiple Sclerosis Society: South Central Arkansas • Louisiana • New Mexico • Oklahoma • Texas 1-800-344-4867 Board of Trustees Chairman ERNEST JOHNSON Houston, TEXAS Treasurer DON McCormack MIDLAND, TEXAS Secretary DAVID CARDER TULSA, OKLAHOMA Regional Executive Vice President Mark Neagli MSConnection Editor James Black © 2013 National Multiple Sclerosis Society: South Central The National Multiple Sclerosis Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The National Multiple Sclerosis Society assumes no liability for the use of contents of any product or service mentioned. Information provided by the Society is based upon professional advice, published experience and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. The National Multiple Sclerosis Society recommends that all questions and information be discussed with a personal physician. We mobilize people and resources to drive research for a cure and to address the challenges of everyone affected by MS. MS STOPS PEOPLE FROM MOVING WE EXIST TO MAKE SURE IT DOESN’T. JOIN THE MOVEMENT Summer 2013 Volume 7 • Issue 3 We want to hear from YOU! What’s on your mind when it comes to MS? We want and appreciate your feedback, ideas, stories and letters to share. You know you’ve got something to say, so here’s your chance. Contact MSConnection Editor James Black via email at firstname.lastname@example.org or by phone at 713.394.2964, or toll free at 1.800.323.4873. SOUTH CENTRAL M OVING TOWA R D A WO R LD F R E E O F M S South Central Offices Arkansas Little Rock 1100 N. University, Ste. 255 Little Rock, AR 72207 Phone: 501-663-8104 Louisiana Tulsa 4606 East 67th St., Ste. 103 Tulsa, OK 74136 Phone: 918-488-0882 Texas Houston 8111 N. Stadium Drive, Ste. 100 Houston, TX 77054 Phone: 713-394-2900 Lubbock 3610 22nd St., Ste. 301 Lubbock, TX 79410 Phone: 888-999-7992 Midland 1031 Andrews Highway, Ste. 304C Midland, TX 79701 Phone: 432-522-2143 San Antonio 9830 Colonnade Blvd., Ste. 130 San Antonio, TX 78230 Phone: 210-694-3200 Metairie/New Orleans 4613 Fairfield St. Metairie, LA 70006 Phone: 504-322-3790 New Mexico Amarillo 6222 Canyon Drive Amarillo, TX 79109 Phone: 806-468-8005 Austin 9600 N. Mopac, Ste. 150 Austin, TX 78759 Phone: 512-340-2700 Dallas 2105 Luna Road, Ste. 390 Carrollton, TX 75006 Phone: 469-619-4700 Fort Worth 4086 Sandshell Drive Fort Worth, TX 76137 Phone: 817-306-7003 Albuquerque 3540 Pan American Fwy NE, Ste. F Albuquerque, NM 87107 Phone: 505-243-2792 Oklahoma Oklahoma City 730 W. Wilshire Blvd., Ste. 103 Oklahoma City, OK 73116 Phone: 405-488-1300 Moving Toward A World Free of MS 3 GetConnected Volunteer to Make a Difference Volunteer with the National Multiple Sclerosis Society. Volunteer opportunities are available for all talents and skills, and for one-time or ongoing activities. Volunteering is a great activity for individuals and families, and for groups from schools, churches and companies. For information on volunteering in Arkansas, Louisiana, New Mexico, Oklahoma or Texas, visit volunteerMS.org or call the National MS Society toll-free at 1-800344-4867. concerns, network with others, give and get emotional support, and receive MS-related information from peers and guest speakers. Self-Help Groups are facilitated by trained Society volunteers. To learn more, call us at 1-800-344-4867. For information on the 2013 Walk MS and Bike MS near you – including how to participate, volunteer or donate – visit walkMS.org and bikeMS.org today, or call the Society at 1-800344-4867. Share Experiences with Self-Help Groups The Society’s Self-Help Groups are ways for persons with multiple sclerosis, their families and friends to meet others affected by MS. While most groups meet in-person, other groups connect online or by telephone. Group meetings provide settings to share common experiences and Offices Closed for Upcoming Holidays Society offices will be closed July 4 for Independence Day and Sept. 2 for Labor Day. Get Connected Online You can join the conversation from the convenience of your home with the Society’s online MS community at MSconnection.org. Learn about topics that are important to you, connect with others, and have expert MS information and opinions at your fingertips. Step Up and Saddle Up: Walk MS and Bike MS This year, thousands of walkers and cyclists are joining the National MS Society to drive multiple sclerosis research, programs and services. Walk MS and Bike MS events run through Fall 2013 in Arkansas, Louisiana, New Mexico, Oklahoma and Texas. To learn more about MS Self-Help Groups, call 1-800-344-4867 4 MSConnection • SUMMER 2013 Letter to the Editor Thanks to BP MS 150 Cyclists I want to thank Ms. Jo Cain, PA-C and Dr. Susan Winchell for riding in the BP MS 150. Linda Alderson recently contacted me and said Ms. Cain wanted to write the name of a person who has multiple sclerosis on the bandana she planned to use in the bike ride. I was honored to give my permission. As a person who has MS, this ride is important to me because it raises money for research about the cause, treatment and, hopefully, a cure for MS. I grew up in El Campo and I’m familiar with several other classmates also diagnosed with MS after we graduated from ECHS. However, I’ve read there is no link to having MS and our common roots. I was diagnosed with MS in 1991, at the age of 40. At that time, there were no drugs to treat MS. Finally, in 1994, the first medication to help in the management of MS was put on the market. At that time, Betaseron was only available on a lottery basis, because manufacturers could not keep up with the demand by patients and their doctors. There are now 10 FDAapproved disease-modifying agents, and three can be taken in pill or capsule form. The money raised by the BP MS 150 has played a big part in research and development of these drugs. “No drug provides a cure for multiple sclerosis, so it is important to have a variety of treatment options available for patients,” said Russell Katz, M.D., director of the Division of Neurology Products in the FDA’s Center for Drug Evaluation and Research. “Multiple sclerosis can impair movement, sensation and thinking, and have a profound impact on a person’s quality of life.” Again, I want to thank Ms. Cain and Dr. Winchell (as well as others from El Campo) who have taken time from their busy schedules to be one of 12,000 riders who annually raise millions of dollars for treatment and research for multiple sclerosis. Doris (Williams) Varnell Dripping Springs, Texas Moving Toward A World Free of MS 5 ADVO C AC Y Teen Brings Attention to Respite Care Needs by Kelly Jo Tullberg C are partners have often been called the backbone of America’s long-term care system. On a daily basis, family care partners assist relatives and loved ones with everything from bathing and homemaking to the more complex health-related interventions like medication administration. Caring for someone with a chronic illness like MS can be deeply satisfying, drawing families closer together by their shared concerns and collaborative efforts. However, it can also be physically and emotionally exhausting, particularly for the primary care partner. That is why respite services are so needed. They strengthen family systems while protecting the health Lauryn Sanders and well-being of both the care partner and the care recipient. Lauryn Sanders of Bryant, Ark. understands the importance of respite care. Her mother was diagnosed with MS in 2009 and Lauryn became her primary carepartner. What makes her situation unique is that Lauryn is 16 years old. “I am not your normal 16-year-old teenage girl. I am supposed to be doing the fun things that teenage girls do, such as shopping and hanging out with my friends, but I know that with me being the only caregiver for my mom, I have to be there for her,” said Lauryn. “Respite care is very important to me. It would be nice to have a break, other than school, and I think it would help build a better relationship between the both of us.” On Feb. 26, Lauryn shared her story as a panelist representing care partners at the 2013 Arkansas Lifespan Respite Summit in Little Rock. She discussed her daily activities and shared that the time she needs to herself “as a teenage girl” is lost due to caring for her mother. 6 MSConnection • SUMMER 2013 Julie Cawthron, Lauryn Sanders, Dawn Sanders and Brooke Smith “I am excited that Lauryn will represent the MS about the unique and diverse needs of care partners and care partner community and share her story. When I care recipients. mentioned her in the planning committee, the other After the summit, the Arkansas Lifespan Respite committee members and agencies loved the idea of care Coalition will be eligible to apply for a federal Lifespan giving from a teenager’s Respite grant to develop perspective,” said Julie or build upon respite Cawthron, Chair of the infrastructures through Arkansas National MS a variety of approaches Society Government designed to enhance or Contact us to learn more about how you can Relations Committee. improve access to and receipt become an MS activist in your community. The purpose of of respite services. This issue Texas the summit is to bring is extremely important and Simone Nichols-Segers 512-340-2707 together interested state urgent, but, to move forward governmental agencies, to ensure that respite services Arkansas & Oklahoma state respite coalition are available to all who need Mireya Zapata 512-340-2703 members, public and them, we need more people New Mexico private entities, family like Lauryn to share their care partners, and experiences and educate us. Vicki Kowal 505-243-2792 individuals interested in Louisiana forming a state respite Crystal Smith 504-322-3787 Kelly Jo Tullberg is a coalition. The National Marketing Manager with MS Society has taken an the National MS Society. active role in the Lifespan She can be reached at email@example.com. Respite Care issue on both the state and national levels. The summit aims to educate and enlighten attendees Make Your Voice Heard as an MS Activist Moving Toward A World Free of MS 7 Making C and a Diff Public Po by Kelly Jo Tullberg Arkansas GRC Co-Chair Julie Cawthron spoke at the 2013 Public Policy Conference. 8 MSConnection â€˘ SUMMER 2013 Connections fference at 2013 olicy Conferences O ADVO C AC Y ne of the most important tools we have in the MS government education, but it quickly became apparent mission is our voice. Earlier this year, more than that Nolan was the MS Activist, attending to tell his 170 volunteers used their voices to advocate on behalf story. Nolan was diagnosed with MS last year at the age of families living with multiple sclerosis by attending a of 10 and he wanted his voice to be heard. Public Policy Conference in their states. In New Mexico, MS Activist Holly Ridgeway found The 2013 Public Policy Conference is a one-day her first experience at the Capitol very empowering. “I event held in each was amazed at how state’s Capitol, and it willing the senator includes both training was to sit down and for MS Activists and listen to us. They really meetings with state welcomed us,” she legislators. It is a said. “MS advocacy chance for volunteers is something I can to make connections, be passionate about share their stories, and because it means educate legislators so much to me. about priority issues: Participating in this increasing access to conference as an MS health care, advocating Activist made me feel for fairness in health like I could actually do insurance contracts MS Activists Darla Marion, Carla Davis and C.W. Gardenhire something constructive and prescription drug about MS. I cannot strategized for meetings with legislators at the Arkansas pricing, and research wait to do more.” Capitol. funding. Connections made at this year’s Public Policy Among the attendees this year was 11-year-old Conferences have already made a difference for many Nolan Mitchell. He showed up at the Texas Capitol people living with MS. In Arkansas, the National wearing his orange tie – orange is the color of the MS MS Society drafted legislation that protects families mission – and accompanied by his dad. At first glance, from unexpected increases in out-of-pocket costs for it looked like Dad was taking his son along for a little prescription drugs by requiring 60-day written notice of Moving Toward A World Free of MS 9 (Left) Sen. Robert Deuell and Nolan Mitchell (Top Right) MS Activists Audrey Blank (left) and Tracy Asamoah (right) shared the National MS Society’s public policy priorities with Representative Debbie Riddle at the Texas Public Policy Conference. (Bottom Right) Texas Senator Robert Deuell met with MS Activists on the Senate Floor. Senator Deuell sponsored a resolution in the Senate recognizing MS Activists for the hard work they do every day. changes in financial responsibility. The Society secured Senator Jon Woods and Representative Justin T. Harris as sponsors for the bill, SB 916, and engaged MS Activists for every key vote. Twenty-six MS Activists shared their stories with legislators during the Public Policy Conference in Little Rock on Feb. 12. They then followed up after the conference by contacting their legislators and even attending key votes. Speaking to his colleagues on the House Floor before the final vote, Representative Harris acknowledged the MS Activists sitting in the gallery to witness the vote, and he spoke about the personal stories he heard. He went on to express disappointment that the bill didn’t do more to protect individuals with chronic illness, but said, “I made a promise to them up in the gallery that when the 90th Assembly convenes, whether I come back or not, we will do something better for them.” The House passed the bill April 12; Arkansas Governor Mike Beebe signed it into law on April 16. “It is so important for someone with a chronic illness, like MS, to maintain access to medications. Families need time to prepare, plan and budget for out-of-pocket health care costs, and SB 916 will guarantee that they receive advance notice in time to help them do so,” said Mireya Zapata, Associate Vice President of Activism for the National MS Society. Additional successes from this year’s conferences include: • In New Mexico, 29 MS Activists visited 22 state senators and representatives in the offices and hallways of the Capitol in Santa Fe on Jan. 30. During these meetings, six legislators shared personal connections to MS with activists, which can be 10 MSConnection • SUMMER 2013 important information to know when it comes time to ask for support on legislation. These legislators may be willing to be “Champions” and lend their expertise and assistance on MS priority issues. • In Oklahoma, 35 MS Activists attended the Feb. 6 Public Policy Conference. House Bill 1672, sponsored by Representative Gus Blackwell and Senator David Holt, was introduced by the Society and will provide important protections in health insurance contracts. Because MS Activists shared their stories and pushed for this legislation, it passed with unanimous votes in the Oklahoma Senate and House, and is expected to be signed by Governor Mary Fallin. • In Texas, more than 60 MS Activists joined 11-yearold Nolan Mitchell Feb. 27 in Austin for the Texas Public Policy Conference. In addition to making connections with state legislators, attendees connected with the MS community during the Get Connected: Austin Luncheon at the Capitol. Families impacted by MS were invited to join MS Activists for a time of great food and conversation. Legislators joined the MS Activists for both a breakfast gathering and the lunch, and many connections were made during meetings and visits. • Wrapping up the 2013 Public Policy Conference season, more than 40 MS Activists visited the Louisiana Capitol in Baton Rouge on April 24 to discuss support for expanding affordable health care in Louisiana. However, the work is not over once the Public Policy Conference ends. Personal stories are invaluable as our MS Activists reach out to legislators on priority issues. To stay informed on progress made by our MS Activists, and to receive calls to action on priority issues, sign up for the Action Network at nationalMSsociety. org/MSactivist today. Kelly Jo Tullberg is a Marketing Manager with the National MS Society. She can be reached at kelly. firstname.lastname@example.org. MS Activist Susan Granger and GRC Chair Julie Cawthron visited with Senator Jon Woods outside of the Arkansas Senate. Moving Toward A World Free of MS 11 MS Activists listened to legislative proceedings in chambers at the Capitol in Santa Fe, N.M. MS Activists gathered in Little Rock for the Arkansas Public Policy Conference. 12 MSConnection â€˘ SUMMER 2013 MS Activists gathered at the Texas Capitol for the 2013 Public Policy Conference. Rep. Gus Blackwell met with Oklahoma activists at the 2013 PPC. Moving Toward A World Free of MS 13 Annett A nnette Funicello, beloved 1950s Disney “Mouseketeer” and 1960s movie star, died April 8 at the age of 70 from complications of multiple sclerosis. In addition to being an actress, wife and mother to three children, Ms. Funicello was a respected advocate for multiple sclerosis awareness and research, a disease she lived with since her diagnosis in 1987. “Our condolences and heartfelt wishes go out to Annette’s family,” said Cyndi Zagieboylo, president and CEO of the National MS Society. “The love we all had for her since she debuted as a Disney Mouseketeer has put a very personal face on MS for millions of Americans and helped rally them to the MS movement to end this disease forever.” Born in Utica, N.Y. on Oct. 22, 1942 to an Italian-American family, Ms. Funicello was discovered in Rememberi Annette Joanne Funicello October 22, 1942- April 8, 2013 14 MSConnection • SUMMER 2013 tte Funicello 1955 by Walt Disney during her performance in “Swan Lake” at a Burbank, Calif. dance recital. On the basis of this appearance, Disney cast her as one of the original Mouseketeers. For the next four years, she sang and danced on TV, quickly becoming the most popular and famous Mouseketeer on the program. As Ms. Funicello and the nation’s baby boomers grew up together, she found continued success as a young movie starlet. She starred in numerous Disney films, including the classics “The Shaggy Dog” and “Babes in Toyland.” She then co-starred with teen heartthrob Frankie Avalon in the popular sand-and-surf “Beach Party” movie series. Ms. Funicello semi-retired after marrying her first husband, Jack Gilardi, in 1965 and they had three children together. During this time, she guest starred in a variety of projects, including episodes of “Fantasy Island” and “The Love Boat,” and a series of commercials for Skippy Peanut Butter, which launched in 1979. Following a 1981 divorce, Ms. Funicello married Glen Holt, a race horse breeder, in 1986. Ms. Funicello first noticed her MS symptoms in 1987 while making the movie “Back to the Beach,” a friendly spoof of her “Beach Party” that my mission is to help others raise funds for MS. The more I read about MS, the more encouraged I am. When I wake up in the morning, I like to imagine this is the day I’m going to hear about an MS cure on the news.” Although Ms. Funicello was forced by the effects of MS to retire from her stage and screen career, her indomitable spirit led her to found the popular Annette Funicello Collectible Bear Company, which created unique bears for more than 10 years until 2004. Portions of the proceeds from several of these lines were also donated to the National MS Society. In 2002, Ms. Funicello accepted the role of Ambassador for the Society’s Walk MS events. She shot several public service announcements and encouraged fans to form “Annette’s Amazing Angels” Walk MS teams to educate the public and heighten awareness Funicello began her professional career at about the challenges of living the age of twelve and rose to prominence as one of the most popular “Mouseketeers” with MS. Although her public on the original Mickey Mouse Club. appearances became fewer in later years as her MS complications California Community Foundation. worsened, Ms. Funicello remained Ms. Funicello once said, “When committed to the mission of the the stories about my MS came National MS Society and to all those out, everyone gave me their love impacted by multiple sclerosis. and their prayers. I’m human, and Ms. Funicello is survived by her sometimes I can’t help but ask, three children, Gina Portman, Jack ‘Why me?’ But I believe everything Gilardi Jr. and Jason Gilardi; and her happens for a reason and I know now husband, Glen Holt of California. films. In l992, when rumors and gossip began to surface in the media after Ms. Funicello’s MS symptoms became increasingly pronounced, she decided to go public with her condition. A year later, she opened the Annette Funicello Fund for Neurological Disorders at the ing MS Ambassador Moving Toward A World Free of MS 15 AWA R E N E S S MS Awarenes Makes Strong e celebrated MS Awareness Week March 11-17, a time that connected our communities with the National MS Societyâ€™s vision of creating a world free of multiple sclerosis. Across our five-state region, we saw fundraisers, activists, volunteers, care partners, staff and others create opportunities to heighten awareness of multiple sclerosis and the services provided by the Society to everyone impacted by the disease. From a colorful fashion show and local W 16 MSConnection â€˘ SUMMER 2013 ss Week g Impressions proclamations to painted horses (sculptures, that is), South Central lit up the MS movement. However, our work doesnâ€™t stop with just one week. MS awareness and educating our communities are year-round efforts. Visit nationalMSsociety. org for information about the Societyâ€™s efforts and how you can help raise awareness, and join our online community at MSconnection.org to connect with others dedicated to stopping MS in its tracks. Moving Toward A World Free of MS 17 LIVING WITH MS On the Move Luncheon Thrills with Another Sold-Out Event by Taylor Mallia Photos by Kim Coffman E.J. Levy shared her personal story of being diagnosed and living with MS. Culturemap’s Shelby Hodge stepped in as emcee when Melanie Lawson had a family emergency. Brothers Griff and Hunter Jaggard shared their story of how Griff’s diagnosis impacted their family. Their mother, Marilyn, has been a Society volunteer on the luncheon committee for several years. Applauding the successful efforts were Wendy Bedortha, Lu Caltagirone, Emily Covey, Lesha Elsenbrook, Judi Johnson, Susanne and Ernest Johnson, Pam Jones, Debbie Kanaly, Elizabeth Kanaly, Ginger Kanaly, Vicki Kanaly, Kathy Knott, Alan and Crystin Pactor, Joelle Rogers, Regina Rogers, Carol Sawyer, Cindy Soefer, Lynda Transier, Donna Vallone, Faye Watt, and Sharon Wilson. he On the Move Luncheon, held Feb. 20 at Houston’s Hotel ZaZa and benefiting the National Multiple Sclerosis Society, drew 420 supporters. Chairman Franelle Rogers was thrilled with the fourth consecutive sold-out annual event, which raised more than $170,000. Honorary Chairmen Nancy and Cardon Gerner applauded the efforts. Person on the Move Roz Pactor, an active community volunteer, was honored for her many volunteer efforts, especially for the MS mission. Her brother – Grammy-award winning artist, producer, songwriter, music supervisor and performer Steve Tyrell – came to Houston to present the Person on the Move award. The Society’s cause is close to their family, as Steve’s daughter was diagnosed several years ago. Roz received a standing ovation after the introduction. The crowd was thrilled, especially when a private dinner was auctioned off with Steve as the special guest. Representing the Company on the Move award winner – The Blue Bird Circle Multiple Sclerosis Clinic at Texas Children’s Hospital – was Dr. Timothy Lotze, who spoke of research and new discoveries to help those with MS. T Taylor Mallia is Associate Vice President, Strategic Philanthropy with the National MS Society. Based in Houston, Taylor can be reached at email@example.com. 18 MSConnection • SUMMER 2013 Cardon & Nancy Gerner Brittney & Hunter Jaggard, Franelle Rogers and Griffin & Jessica Jaggard Roz Pactor, Dr. Timothy Lotze and Franelle Rogers Franelle Rogers, Steve Tyrell and Roz Pactor Dallas Gets On the Move In November! The 2013 Dallas On the Move Luncheon Friday, Nov. 8 â€˘ Ritz-Carlton Dallas For details and ticket information, contact Taylor Mallia at firstname.lastname@example.org. Moving Toward A World Free of MS 19 GET INVOLVED Fundraiser Targets MS with New Event by April Brownlee hen Walk MS: Amarillo top fundraiser Tami Phillips attended her first National MS Society National Leadership Conference, she came back inspired to aim for an even higher level of fundraising … literally. With her husband John, Tami went to work planning her idea for a clay target shooting event to raise money for her Walk MS campaign. The entire Phillips family pulled together. They also enlisted the help of a planning committee, made up of friends and other contacts, to make Tami’s vision become a successful reality: the first “Shoot Out MS” drew dozens of participants and raised close to $20,000. “It means everything to me. My heart is in it because I have MS. It was a point in my life that was just miserable. I don’t know if all of us have those kinds of moments, but we definitely had that moment,” Tami said. “The National MS Society has helped me out before and I can’t do enough to pay them back.” With the success of her first event, Tami has her sights set on even bigger goals in 2013. “I’m hoping to double what we’ve done. We all have high expectations and we’d like to see it do more and better every year,” she said. W John and Tami Phillips April Brownlee is a Senior Development Manager in the Society’s Amarillo, Texas office. She can be reached at email@example.com. 20 MSConnection • SUMMER 2013 Save the Date! A re you ready to get uncorked, beef up, sharpen your smarts and demonstrate vintage taste? Then 2013 is your year throughout our South Central states: Aug. 1, 2013 • 6 – 9 p.m. Oklahoma Jazz Hall of Fame • Tulsa, Okla. This fun-filled evening will include hors d’oeuvres from Lambrusco’z to Go, Triumph Wines produced by Calistoga Cellars, silent and live auctions, and more. Tickets can be purchased online and many sponsorship opportunities are still available. Details: uncorkingthecureforMSok.org Aug. 11, 2013 3 – 6 p.m. The Beef-a-thon is a unique fundraising event hosted in the Texas Panhandle area. Texas cattle feeders have teamed up with the National Multiple Sclerosis Society for more than 40 years, raising tens of thousands of dollars each year to support the MS moo-vement. The Beef-a-thon is a televised (and online) auction, broadcast live on KCIT Fox 14. The event features hanging quarters of beef, 15-lb. boxes of 90 percent lean ground beef and other items for the highest bidders. All the tasty details: beefathon.org A Vintage Affair for MS Aug. 8, 2013 • 6 – 9 p.m. Oklahoma History Center • Oklahoma City, Okla. Show off your smarts in multiple rounds of team trivia with amazing raffle prize packages (and all-important braggin’ rights!) at stake. Plus, get ready to be WOWed by the return of the Wall O’ Wine. Details on sponsorship and team registration: MStriviachallenge.org Nov. 15, 2013 Hyatt Regency Hotel • New Orleans, La. The annual Renaissance Party has undergone a renaissance of its own with a new name and Vintage flair. For more information or to sponsor this event, contact Jennifer Simon in the Society’s Metairie, La. office at 504-322-3788 or by email at firstname.lastname@example.org. Moving Toward A World Free of MS 21 GET INVOLVED 3rd Annual Art Bike Tulsa Goes on Display at Mayfest and Tulsa Airport by Brandi Moore A rt Bike Tulsa launched at the Downtown YMCA building in Tulsa on May 1. The display was a featured gallery in the 41st Annual Tulsa International Mayfest on May 16-19. All Art Bikes then move to the Tulsa International Airport on May 31 to be on display in the baggage claim area at each terminal from June 1 to Sept. 30. Art Bike Tulsa is an installation of colorful, uniquely-designed bicycles, transformed by some of Tulsa’s leading artists and high school students to bring awareness to multiple sclerosis, the National MS Society and Bike MS. Many special thanks go to our returning presenting sponsor SCFM Compression Systems Inc. for making this awareness opportunity possible. The artists featured this year are Michael Christopher, Jan McKay, Billie Sue Thompson and Robin Green Tilly. The high schools that participated are Booker T. Washington and Broken Arrow. Many of the artists had a direct connection to someone affected by MS. One touching story is that of Jan McKay and Rhonda Fletcher. Jan has been an MS volunteer for 23 years and has participated in Bike MS for 20 years. Jan loves riding for the cause and has been blessed with meeting many great people along Bike MS rides. “I ride in honor of my good friend, Rhonda Fletcher, who was diagnosed with MS 23 years ago,” said Jan. “I wish no one had to endure MS. I feel good aiding in fundraising efforts to assist others.” Rhonda Fletcher volunteers at the Society office once or twice a week. “I am appreciative of the riders who endure Bike MS each year for me and others who have been diagnosed with MS,” she said. When first diagnosed, Rhonda went into denial. “My good friend Jan literally bugged me for years to get involved with the organization,” she said. When Rhonda finally did, she was impressed by every person she met and was touched that they were doing so much 22 MSConnection • SUMMER 2013 for her and others. The National MS Society would like to thank the Tulsa International Mayfest, Heather Pingry, the Tulsa International Airport and Michelle Evans. View photos online at our website, Facebook page or Flickr site. Visit nationalMSsociety.org/ok to find the Art Bike Tulsa Web page. For questions or comments about Art Bike Tulsa, contact Gena Hyde at email@example.com. Moving Toward A World Free of MS 23 C OV E R S T O R Y by Elaine Liserio Photos by Chase Shull 24 MSConnection â€˘ SUMMER 2013 very connection counts. The power of connections was clearly evident this March during the National MS Society’s Champ Camp in Burton, Texas, sponsored by Valero Energy Corporation. While many are aware that multiple sclerosis occurs most commonly in adults, it is also diagnosed in children and adolescents. Estimates suggest that between 8,000 and 10,000 children – defined as up to 18 years old – in the United States have multiple sclerosis. Over the course of a weekend, the annual Champ Camp provides opportunities for children with MS and their families to connect with others to build their support networks. They also connect with E quality information and resources, all in a fun, accessible recreational environment. This year, Champ Camp had 57 campers who encompassed 13 families who have a child or adolescent living with multiple sclerosis. Of these 13 families, seven were new to the experience. They came from various parts of Texas, two families from Louisiana, and, through the Society’s connection with the Pediatric MS Alliance (PMSA), one family from California and another from Boston. PMSA is a Facebook group whose purpose is to connect families of children with MS. Parents and family members from across the world have joined the group and actively promote Champ Camp and other Society resources. The super hero-themed weekend included all the fun-filled activities expected at camp, such as fishing, horseback riding, high ropes zip lining, and arts and crafts that both children and adults enjoyed. In addition, children and parent discussion groups were hosted by volunteer physicians and researchers from the Pediatric MS Clinic at Children’s Medical Center of Dallas. These groups provided opportunities for campers to share, ask questions, and learn from each other and the health care experts. We’d like to extend special acknowledgments and a huge thank you to the following people for making this extraordinary weekend possible: Moving Toward A World Free of MS 25 • Valero Energy Corporation has been a long-time sponsor of Champ Camp. This year, Valero provided $50,000 to Champ Camp and the Society’s scholarship program in support of their commitment to children’s programming. • Elin Phillips, founder of the Pediatric MS Alliance, has been a tremendous support in promoting our children’s programs. She volunteered her time at Champ Camp and ensured all participants were welcomed, new participants connected with others and everyone had a great time. Through Elin’s efforts, all families who attended camp have a venue to stay connected through the Pediatric MS Alliance Facebook page. 26 MSConnection • SUMMER 2013 • Dr. Donna Graves, deputy director of the Pediatric Multiple Sclerosis Clinic at Children’s Medical Center of Dallas, and her team from The University of Texas Southwestern Medical Center at Dallas, volunteered their time and expertise for the second year in a row. Together, they ensured participants had their questions answered and were up-to-date on research and treatment options. • Volunteers Jack Engle, Merry Ribnikar and Erika Bergeron provided their creative talents, tools and material resources to make arts and crafts special for all who came in to do art projects. • Camper Michelle Reid volunteered her talents in leading a Zumba class that got everyone moving. • As a child impacted by MS, Bekah Boone benefited from attending camp with her family for many years. Now, as a young adult, she continues to give back as a volunteer. Bekah shared her high spirits at bingo calling and her creativity in decorating for the Saturday Super Hero Party. • Through their corporate connections, Society Development staff members Calvin Pollard and Kelli Dreiling were able to secure and donate airline tickets, making it possible for the family from California to attend Champ Camp. Calvin also took time to drop by camp and connect with this family to make certain their trip was a good experience. • Society staffers Crysta Clendennen and Erin Fogarty provided special support and quality customer service throughout the weekend. • Last but not least, we’re grateful for Recreation Programs Specialist Nan Rose for her leadership and dedication to a quality experience for all involved. Her hard work ensured Champ Camp participants will continue to stay connected to the National MS Society and each other. Elaine Liserio is Vice President, Programs and Services, with the National MS Society: South Central. Based in the Society’s San Antonio office, Elaine can be reached at firstname.lastname@example.org. Moving Toward A World Free of MS 27 EVENTS Riders Cowboy Up for Annual MS Trail Ride by Sharon Ziegler 28 MSConnection â€˘ SUMMER 2013 ooking back, Mary Howard recalled April 12, 1997 as the coldest day of the year in Stephenville, Texas, with dark clouds and horrible winds. Despite the ominous weather, 62 horseback riders turned out for the 1st Cowboy Capital MS Trail Ride. Mary, co-chair of the now-annual trail ride, explained the origins of this unique event. “My husband, who has MS, and I were members of a small support group in Stephenville when the Fort Worth office of the National MS Society contacted our leaders about hosting a community walk,” Mary said. “Stephenville is known as the ‘Cowboy Capital of the World’ and home of Tarleton State University’s rodeo team. We agreed to get involved, but, as Debbie Cole, one of the original co-chairs said, ‘Around here, we ride, we do not walk.’ ” L From that conversation, the Cowboy Capital MS Trail Ride was born. This spring, Mary and other volunteers were planning the 17th annual trail ride, which took place May 4. A key volunteer is Dr. David Snyder of Tarleton University. Dr. Snyder teaches equine therapy for individuals with disabilities, called Tarleton Equine Assisted Therapy. With Dr. Snyder’s involvement, the ride takes place at Tarleton State University’s 1,200-acre ranch. The university has been a key partner, providing use of the ranch, tables, chairs and water troughs for the horses. Each year, all riders must register and turn in their donations before the trail ride begins. They are each given an official Cowboy Capital MS Trail Ride T-shirt and a goodie bag with items donated by area businesses. Moving Toward A World Free of MS 29 Breakfast is provided for all riders and volunteers by FMC Technologies and Diane Tidwell. A morning rest stop is furnished by Saint Gobain and manned by Marie Davis. Later in the day, the Knights of Pythias donate, cook and serve a full barbecue lunch. Trophies are given to the team that brings in the most donations, the team that has the most members riding and the team with the most spirit. In addition, prizes are given to top fundraisers, as well as the oldest rider (78 years young, so far), and the youngest rider (3 years). A silent auction is part of the day’s festivities. In addition to the trail ride, there is a 5K “Trailrun” for those who do not have horses, but want to participate in the event. Runners pay a $25 entry fee and enjoy the beautiful ranch and the great outdoors. “We average 75 riders and are able to send about $12,650 to the National MS Society each year,” Mary said. “It is an amazing, family-friendly day with riders and runners of all ages. We have many people who volunteer their time, money and labor to make sure everyone has a wonderful day. Everyone feels the hard work is worth it as we are able to make a difference for people living with MS by raising funds for research. This feeling of hope for a better life for people with MS is what the Cowboy Capital MS Trail Ride is all about.” Visit cowboycapitalMStrailride.com for more information. Sharon Ziegler is the Senior Manager for the Society’s Strategic Philanthropy Department and the primary contact for the Society’s Do-It-Yourself Events. She can be reached at email@example.com. 30 MSConnection • SUMMER 2013 VOL U N T E E R Scholarship Volunteers Share Lessons in Helping Others by Jeff Harrison Y ou have a connection to MS. Whether you live with it, are a care partner for someone or work in some capacity for the various organizations or fundraisers to help eliminate this disease, it affects you. While MS has brought us together, we can all use our respective talents to help the cause. Everyone is good at something or wants to contribute in some form or fashion, so the question is: What can you do to help? Here is the story of a former cake decorator, a clinical project manager and a certified property manager all doing their part by reviewing applications for the National MS Society’s education scholarship program: Amber Kocian, a Texas Woman’s University student, is currently pursuing a position as an occupational therapist and is halfway through her program. Since her uncle lives with multiple sclerosis, it encouraged her to follow this course of instruction. She has been volunteering with the Society for four to five years now and finds it quite a rewarding experience. When reading through some of the scholarship applications, Amber keeps a tissue close at-hand as she reads about the fortitude Amber Kocian these individuals showcase. “I was impressed at their reference letters and how much they did,” she said. “Some of these high school students really work hard helping out their parents while also keeping up their studies.” Dr. Darpan Patel is a clinical research project manager for the School of Nursing at the University of Texas Health Science Center at San Antonio. Dr. Patel is an MS advocate in the San Antonio area who has been volunteering for three years and did his doctoral work on the subject of multiple sclerosis, so he has a passion for those affected by it. He called it very near and dear to him. One of the reasons Dr. Patel wanted to review the applications was that he Dr. Darpan Patel understood the role care partners have and wanted to give of his time to help them pursue higher education. He was greatly impressed with the passion these young adults have and the impact that having a parent living with MS has had on them. Debbie Yarborough lives in Plano, Texas. A certified property manager, Debbie gives of her time to the National MS Society, the North Texas Food Bank, Junior Achievement and others. She truly has a heart for giving of her time. She commented that providing deserving students with scholarships gives them both a short-term benefit and a greater, long-term one by positively influencing society through their contributions. “Heartwarming, inspirational and encouraging …” were the words she used to describe the applications. These three volunteers help make a difference in the lives of scholarship program applicants. Likewise, the applicants impact the lives of the reviewers. It truly shows that together, we all can make a difference. For information on the National MS Society’s scholarship program, call 1-800-344-4867. Contributor Jeff Harrison volunteers with the National MS Society in Oklahoma. Moving Toward A World Free of MS 31 RESEARCH Golden Opportunity Circles Friends Around Funding Research by Tony Ralf wo years ago, an idea was floated among volunteers for holding an intimate event to help fund MS research. It took that amount of time to work through multiple business schedules and travel for any form to take shape around the proposal, but it was worth the wait. On Feb. 28, at the San Antonio, Texas home of Kathleen and Byron LeFlore, a two-hour Golden Circle event attracted 30 of their closest friends and business associates for cocktails, hors d’oeuvres and MS research fundraising. This single event successfully funded a research pilot project and raised $44,000. Byron is a founding member of the National MS Society’s South Texas Leadership Council. These volunteer councils are instrumental in helping local Society offices identify new sources of revenue outside of the traditional Bike MS and Walk MS fundraising events. Council Chair Karen Miles said of the event and the LeFlores, “A huge, heartfelt thank you to Byron and his wife Kathleen for generously giving of their time, expertise and energy in hosting a truly inspirational and most enjoyable evening that resulted in significant dollars raised for MS research.” The LeFlores were understandably pleased with the outcome, since their preliminary conversations didn’t dream of securing funding as large as this. But, T as they built their team of other leadership volunteers and National MS Society staff, nothing was going to get in the way of the momentum they were building. Those who know the LeFlores had no doubt about the outcome. Later, recalling the evening, the LeFlores’ kindness surfaced once again as Byron said, “Given the generosity already shown by those who made this event a success, Kathleen and I will consider it a privilege to raise the remaining funds necessary to allow the project to proceed. Once that gets done, we can all declare a victory.” That “victory” took place, and the funds raised will underwrite Dr. Paula Dore-Duffy’s pilot study in MS research, approved by the National MS Society, where she is testing a novel source of stem cells – derived from fat cells – to determine their potential use to replace cells lost and induce repair. For more information about the Golden Circle or MS research, contact Shannon Nelson at firstname.lastname@example.org or 469-619-4704, or visit MSgoldencircle.org. Tony Ralf is Regional Vice President, Development with the National MS Society. Based in San Antonio, Texas, he can be reached at email@example.com. 32 MSConnection • SUMMER 2013 RESEARCH White House Announces Historic Brain Research Initiative In April, Dr. Timothy Coetzee, the Society’s Chief Research Officer, was among a distinguished group of leaders in the field of brain research and patient advocacy organizations invited to the White House. The group was part of President Barack Obama’s unveiling of the historic initiative called Brain Research Through Advancing Innovative Neurotechnologies, or BRAIN, for short. The initiative has been established to map the human brain to understand how millions of brain cells interact. The project will include both government and private institutions, and will enlist three government agencies: the National Institutes of Health, the Defense Advanced Research Projects Agency and the National Science Foundation. Starting with a $100 million investment of federal funding in 2014, the new research initiative will establish and refine new technologies to understand the human brain. The Obama administration has designated this initiative as the grand challenge of the 21st century, much as the Human Genome Project was named a grand challenge of the 1990s. “We are pleased to join forces with scientific leaders and other patient advocacy organizations to celebrate the launch of this inspiring initiative,” said Dr. Coetzee. “Knowing how brain cells interact and creating maps of these interactions will accelerate our efforts to find the best treatments to restore lost connections in MS and other brain diseases.” The BRAIN initiative grew out of a September 2011 meeting of neuroscientists and nanoscientists in London to advance the idea that the next big scientific discoveries will come from interdisciplinary research. Brain disease affects one-in-six Americans, which amounts to 50 million people in the United States. The annual economic impact of brain disease in the United States is $400 billion, with multiple sclerosis contributing some $29 billion to this total. Moving Toward A World Free of MS 33 RESEARCH Neurologists Strike a Nerve for MS Progress More than 12,000 neurologists and researchers convened at the American Academy of Neurologyâ€™s (AAN) annual meeting in San Diego in March to share progress in understanding and treating neurological diseases like multiple sclerosis. Here are a few highlights from more than 500 MSrelated presentations focusing on the Societyâ€™s three strategies of stopping MS, restoring function and ending MS forever. Stopping MS Many studies were presented that showed continued benefit and safety of available therapies, and additional findings from therapies proceeding through the development pipeline. Other studies looked at factors that may drive MS progression and relapses, opening possibilities for stopping MS in its tracks. Amiloride in progressive MS: This oral blood pressure medicine was tested in a small study of people with primary progressive MS because it had been shown previously to have nerve-protecting properties. Dr. Tarunya Arun of Oxford University reported that treatment with amiloride resulted in a reduction of brain shrinkage associated with progressive disease. Further testing is underway. Large trial in progressive MS: A presentation by Dr. David Miller of University College London and an international team suggested that progress is being made in a large trial of Gilenya. The study of more than 1,000 participants with primary-progressive MS is designed to determine if Gilenya can slow down MS disability. New form of existing therapy for relapsing MS: Dr. Peter Calabresi of Johns Hopkins University presented results of an international, phase 3 trial of peginterferon in relapsing MS, a new form of Avonex designed to stay in the body longer than the standard form. Results suggest peginterferon injected under the skin every two or four weeks was effective in reducing relapse rates and reduced the risk of progression of disability. Trial sponsor Biogen Idec has announced plans to apply for regulatory approval in 2013. Copaxone in fewer doses: Dr. Omar Khan of Wayne State University, Michigan, presented results of a one-year phase 3 trial suggesting that under-the-skin injections of twice the standard dose of Copaxone, taken three times per week, were effective in reducing relapses and MRI-detected disease activity. Sugar and progression: A study from Drs. Wael Richeh, Jesus Lovera and colleagues at Louisiana State University asked whether blood sugar is linked to levels 34 MSConnection â€˘ SUMMER 2013 of MS disability. It found that people with higher levels of glucose were more likely to have higher levels of disability. This important lead needs more study to prove a role for blood sugar in MS progression. Tool to track progression: Dr. Nicholas LaRocca of the National MS Society described efforts of the newly-formed MS Outcome Assessments Consortium (MSOAC) to accelerate development of more effective treatments for multiple sclerosis, particularly for progressive forms of MS. MSOAC is a coalition of industry, academia, patient representatives, regulatory and other government agencies, and the National MS Society. In collaboration with the Critical Path Institute, they will analyze data from completed clinical trials and work with regulatory agencies to qualify a new clinician-reported outcome measure; the measure can be used to more sensitively track the impact of therapy on disease disability and progression for future research. Kessler Foundation in New Jersey tested whether aerobic exercise impacts the brain. Using MRI scans and memory tests, they found hints that aerobic exercises – in 30-minute sessions, three times a week, over three months – improved memory and increased the volume of the hippocampus, a part of the brain involved with memory and other functions. Ending MS Forever Reports focused on risk factors that may contribute to making a person more likely to get MS. This line of research could eventually lead to ways to prevent people from getting multiple sclerosis. Reproduction and risk of MS: Drs. Melinda Magyari, Per Solberg Sorensen and colleagues from the Danish MS Center in Copenhagen looked at factors that may account for increased incidence of MS in women over several decades. Using the Danish MS Registry, which captures information on most people in their country who have MS, they found that pregnancy and childbirth offered significant protection against developing MS, lasting up to five years. This and other studies can offer more clues to the influence of hormones and other factors in MS. Environmental exposures: Drs. Ellen Mowry at Johns Hopkins University, Lisa Barcellos at University of California-Berkeley and colleagues asked a sample of women about their possible exposures to specific environmental factors. Preliminary results, which require further study, showed that women exposed to small pets may have been protected from developing multiple sclerosis, while those exposed to hair permanent solution may have had increased risk for developing MS. Restoring Function The broad area of research to restore function encompasses efforts to repair the nervous system and stimulate recovery of lost function through exercise, rehabilitation and other means. “Rewiring” the brain: Dr. Maria Assunta Rocca of San Raffaele Hospital in Milan, Italy presented data of how the brain reorganizes to adapt to MS damage. Researchers looked at the impact of a 12-week computer-assisted course that focused on training to increase memory and attention. Using functional MRI, which allows a real-time glimpse of the brain at work, they found indicators that brain circuitry and activity had increased in specific areas, which appeared to persist at least six months after training was completed. Exercise and the brain: Society-supported scientists Drs. Victoria Leavitt, John DeLuca and others at the Moving Toward A World Free of MS 35 RESEARCH Research Round-Up Is There a Link between Salt and MS Attacks? Three studies published this spring by collaborators at Yale, Harvard and MIT/Broad Institute suggest that dietary salt can speed the development of an MS-like disease in mice, providing new insights on immune system activity involved in multiple sclerosis. These studies pinpoint new avenues for strategies that can decrease MS attacks. Although these findings show important evidence that salt may be a factor in driving immune activity in lab settings, more research is needed to determine whether dietary salt plays a role in human MS. Carefully conducted studies of dietary habits would help to confirm the suggestion that dietary salt may be responsible for the increasing rates of MS and autoimmune diseases. Controlled clinical trials in which salt intake is limited in people with MS would be required to determine whether consuming less salt can reduce MS disease activity. Birth Month May Influence Risk of MS British researchers investigated why people born in May appear to have a higher risk of developing multiple sclerosis than those born in November. Tests suggest that those born in May tend to have higher levels of potentially harmful immune cells and lower levels of vitamin D in their blood, and that these factors may influence MS risk. If confirmed in larger studies, this offers more evidence for the interaction of environmental and genetic factors in MS. Society Rallies for Research in D.C. Thousands of people gathered in April on the Carnegie Library grounds in Washington, D.C. to participate in the Rally for Medical Research. The goal was to raise awareness of the critical need to make funding for the National Institutes of Health (NIH) a priority. The National MS Society and nearly 200 other health and science organizations united for this first-of-itskind event, founded and organized by the American Association for Cancer Research. The National Institutes of Health is the largest source of funding for medical research in the world. It has been a driving force behind many decades of advances that have improved the health of people in every corner of the United States. Federal funding for medical research at the NIH has continued to decline since 2003. Getting a New Taste for Reducing Cognitive Impairment The National MS Society is partnering with Accera Inc. and the University of Miami’s Miller School of Medicine to determine potential benefits of Accera’s medical food, Axona, on MS-related cognitive impairment. Axona has 36 MSConnection • SUMMER 2013 been approved by the FDA for management of biological processes linked with mild to moderate Alzheimer’s disease. As a medical food, Axona is intended to be used under physician supervision and has not been approved by the FDA for use in MS. Cognitive problems are a common MS symptom. They may have a negative impact on relationships, work and quality of life. Currently, treatment options are limited. Glucose is used to fuel healthy brain cells; for people with neurological conditions such as MS, however, glucose may not be converted into energy as efficiently as it would be in a healthy brain, which can lead to a decrease in cognitive function. Axona may work to bypass this problem by providing an alternative energy source that is processed in the liver and used by the brain. $18 Million Committed for 65 New Research Projects The National Multiple Sclerosis Society has committed another $18 million to support up to 65 new MS research projects. This funding is part of a comprehensive research strategy aimed at stopping MS, restoring function that has been lost and ending the disease forever. This financial commitment is the latest in the Society’s relentless research efforts, investing an estimated $47 million in 2013 alone to support more than 350 new and ongoing studies around the world. The new projects include a Harvard study asking whether low testosterone levels increase the risk of developing MS for men, to determine whether sex hormones can be manipulated to stop MS; a multicenter study exploring whether there’s a link between microbes in the bowels and the risk of developing MS in childhood; and a project to understand changes in the brain associated with balance problems, which may help design physical therapy programs to restore balance in persons with multiple sclerosis. $3.2 Million Raised for Spasticity Therapy Canbex Therapeutics Ltd. has completed a $3.2 million fundraising round to finish early development of a potential therapy for spasticity in MS. This success leverages an initial 2010 investment in Canbex by the National MS Society’s Fast Forward drug development arm, validating the concept of seeding early development to speed therapies to people with MS. Spasticity is a common and often painful symptom of MS that involves feelings of stiffness, tightness or sudden movements caused by a wide range of involuntary muscle spasms. Many of the current treatments for spasticity can cause significant side effects, such as muscle weakness, sedation or mood alteration that can limit their application in MS. Canbex aims to develop a new therapy called VSN16R to create a better treatment for spasticity affecting people with all forms of multiple sclerosis, including progressive MS. Moving Toward A World Free of MS 37 RESEARCH FDA Approves 3rd Oral Drug for Relapsing MS In March, the U.S. Food and Drug Administration (FDA) approved Tecfidera capsules as a first-line diseasemodifying therapy for people with relapsing forms of multiple sclerosis. This makes the third oral therapy approved for relapsing MS, and the 10th diseasemodifying treatment available in the United States. “The approval of Tecfidera is an important expansion of therapeutic options, and increases our ability to find effective and tolerable treatment solutions for individual patients,” said Bruce A. Cohen, M.D., Professor, Davee Department of Neurology and Clinical Neurosciences at Northwestern University’s Feinberg School of Medicine, and Chairman of the National MS Society’s National Medical Advisory Committee. Said Timothy Coetzee, Ph.D., Chief Research Officer at the Society, “Having 10 disease-modifying therapies available for relapsing forms of MS further motivates us to gather the forces of the global community to make similar strides for people with progressive forms of MS, for whom there are fewer options.” Tecfidera is now available by prescription. Twice-daily Tecfidera was shown in clinical trials to significantly reduce relapses and disease activity on MRIs; in one trial, it reduced progression of disability. The most common adverse events experienced by people taking Tecfidera during the trials were flushing, which can create a sensation of heat or itching, and a red blush on the skin; and gastrointestinal events, such as diarrhea, nausea, and upper abdominal pain. The incidence of these events was highest in the first month of treatment, decreasing thereafter. Before starting treatment, the FDA recommends that a person’s health care provider assess a recent – within six months – blood cell count and repeat the blood cell count annually. Also, women considering Tecfidera should talk to their health care providers if they are pregnant or planning to become pregnant. Taking a disease-modifying therapy is currently the best way to reduce MS disease activity and future deterioration. Selecting a therapy should be done by people with multiple sclerosis in collaboration with their doctors. “The approval of Tecfidera is an important expansion of therapeutic options, and increases our ability to find effective and tolerable treatment solutions for individual patients...” 38 MSConnection • SUMMER 2013 What Picks You Up “Flowers.” – Mary Pursley Kitchens “My children.” – Melissa Moore “God and my MS family.” – Debbie Diener “My kids, which are my pride and joy.” – Ricardo Woods “My little boy! ‘Smile, Mama, I love you.’” – Alexis Smith “Making Thomas laugh always picks him up. He is still small enough to sit in my lap for snuggle and tickle time. I like to whisper jokes into his ear. It always makes him giggle!” – Marilyn Harris McCrary “Snuggling with my puppy and sitting in the sun with him, my feet up in a chair. So relaxing.” – Linda Frazee “My family.” – Brenda Brady “Being surrounded by positive people and loved ones, and, above all else, my faith in God.” – Susan Horton “Music.” – Amanda Tyner-Martinez “Food!” – Dee Breaux “My friends here on Facebook. They’re the best!” – Donna Sweeting “Rest and my grandbaby. He wears me out, but in a good way.” – Tena Jobe Dyar “Comfy PJs and a nap. It always makes me feel 100% better!” – Angie Roach “My sweet boys!” – Jessica Wood Teal “Thinking of being with my granddaughters as they grow is what keeps me going.” – Regina Trueblood “Knowing the National MS Society has my back.” – Kami Jones “Rest! When my husband starts to tire or stumble, he just stops and a little rest revives him.” – Cindra W. Wesley “My two little boys!” – Valerie Buckingham “My kids.” – John Garrett “Rest works best for me!” – Kris Kinniff Manak When MS Tries to Bring You Down? There are good days and then there are “MS days.” Coping with the MS days can involve many strategies; the key is finding which ones work best for you. We recently posed this question on our National MS Society Facebook pages across our five South Central states: What picks you up when MS tries to bring you down? Here are a few of the responses: “My family.” – Susan Connick Aaron “Family, friends and singing!” – JennyAhlin Johnson Henderson “My husband’s optimism.” – Cynthia Bown von Gluck “My daughter, funny pictures, inspirational quotes, etc. And when all else fails, hit the reset button and sleep for the night. Tomorrow is always a new day!” – Melissa Olson Moving Toward A World Free of MS 39 National Multiple Sclerosis Society South Central Chapter 8111 North Stadium Drive, Suite 100 Houston, Texas 77054 We Want You! MSAmbassadors are a group of dedicated volunteers that raise awareness about multiple sclerosis and the educate, engage and encourage others to do something about MS now! Apply Today To learn more about what it takes to become an out an interest form at volunteerMS.org. Together we will end MS. MSAmbassadors