ARKANSAS
M OV I N G TO WA R D A W O R L D F R E E O F M S
SPRING 2012
WALK MS is the Rallying Point of the MS Movement By Lisa Finkbeiner Registration for spring Walk MS events is now open! In 2011, the Walk MS: Arkansas events raised nearly $165,000 for programs and services for people living with MS. Join the Walk MS movement in 2012 and encourage others to Join the Movement as well. Walker Spotlight: “I enjoy getting involved in a team so I can connect with friends and family during this event. It is very moving and it is awesome when you have so many people show up and support you.” said Kimberly Hull, diagnosed in 2010, who has participated in two Walk MS: Northwest Arkansas
What Are You Saying on Facebook? PAGE 4
MS Activists at the State Capitol PAGE 8
events with her team, Small Steppers. “We will have a cure someday. I have faith it will happen soon.” Thank you, Kimberly, for your inspiration! Join us at one of the following Walk MS sites this spring and Join the Movement. Texarkana: Saturday, April 7 Little Rock: Saturday, April 14 Northwest Arkansas: Saturday, April 21 Jonesboro: Saturday, April 28 Hot Springs: Saturday, May 5 Continued page 3
Society Workshops PAGE 9
DIY Fundraising Gets Boost PAGE 15
THE MSCONNECTION is published by the National Multiple Sclerosis Society, Arkansas, 1100 N. University, Suite 255, Little Rock, AR 72207. Little Rock Office 501-663-8104 Outside Little Rock 800-344-4867 Little Rock Fax 501-666-4355 Arkansas E-mail staff’s first name.last name@nmss.org Website www.msarkansas.org
Get Your Arkansas License Plate Today! As of January 2011 the National MS Society: Arkansas now has a specialty license plate! When renewing your car tags please consider purchasing a specialty plate. Please visit www. dfa.arkansas.gov and search for
Development Manager • Lisa Finkbeiner Programs & Services Manager • Brooke Teeter Programs & Services Coordinator • Jessica Fisher Development Coordinator • Lindsay Wiley Newsletter Editor • Brandi Davidson Moore 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. The Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The Society assumes no liability for the use or contents of any product or service mentioned. ©2012 National Multiple Sclerosis Society, Arkansas
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specialty plates for more information or you may contact the National MS Society: Arkansas office at 501-663-8104. The National MS Society will receive $15 donation from the purchase of each plate. This money will be designated to create further awareness for multiple sclerosis to help create a world free of MS.
Ooops! We Made a Mistake In the winter 2012 issue we made a mistake in the Farewell Letter from Paula article. In Paula’s message, it said that there is a MS Center of Excellence in Arkansas. I’m sorry to say that there is not one in Arkansas. This was a typo. There is an MS Center of Excellence in Oklahoma that was referred to in her farewell letter in the Oklahoma winter 2012 issue. We are so sorry for the miscommunication. Thank you for your understanding.
Register at walkMSarkansas. org or contact Lisa Finkbeiner at 501-663-8104, ext. 35304. Visit our website for more information on starting a Walk team, From Page 1
fundraising and online tools. We come together to make a bold statement: We will achieve a world free of MS!
news
A special thanks to our Walk MS Arkansas Statewide Sponsors:
Thank you for partnering with us to create a world free of MS.
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NEWS
Bike MS Arkansas is Spa City Bound
By Lisa Finkbeiner
On the way back to Little Rock, cyclists will enjoy the beautiful scenery of central Arkansas.
Bike MS Arkansas will have a new look this coming September 8 and 9. The ride formerly known as Bike MS: Ride the Rock will now become Bike MS: Rock’n Hot Ride 2012 with presenting sponsor Toyota.
You don’t want to miss this year’s ride. Mark your calendars and make the weekend of September 8 and 9 a family affair. Little Rock and Hot Springs is a win-win combination.
Bike MS: Rock’n Hot Ride will be held Saturday and Sunday, September 8 and 9. The ride will begin in Little Rock on Saturday and make its way through the “Rock” to beautiful Hot Springs. The first leg of the ride will end at the historical Transportation Depot and Plaza and the evening will conclude with our celebration dinner at the Exchange Street Parking Plaza right in the heart of downtown Hot Springs.
Registration is open. Please visit bikeMSarkansas.org for the latest updates on the Bike MS: Rock’n Hot Ride. For more information, please contact Lisa Finkbeiner at Lisa.Finkbeiner@nmss.org or 501-663-8104 ext. 35304.
Early on Sunday, riders will cycle out of the Transportation Depot in route to the finish line.
The Bike MS experience will be the ride of your life. Let’s bike to create a world free of MS.
What are You Saying on Facebook? By Brandi Davidson Moore On February 14, we asked you to share with us what you love about your loved ones. The responses were so sweet we had to share. We also randomly selected one lucky winner from the responses to receive a prize. Here are some of the responses: • Tiffany Smith – “I love how I can always count on my loved ones to LOVE and support me on my good days and my bad days...I don’t know of many friends that will visit you in the hospital and give you a pedicure, manicure, and SHAVE your legs for you because you can’t! I’m blessed!” • Mary Kathrine Smith – “I love how they don’t focus on my disease, but on me.” 4 I JOIN THE MOVEMENT: nationalMSsociety.org
• Darlene Ward Avery – “I love that my loved ones are there for me through the good and the bad. My son passed away two years ago this month and then I was diagnosed with MS three months later. It is their love & the grace of God that gets me through each day. Happy Valentine’s Day to all my fellow MS friends! May God bless you all with love, family, and friendship today and every day.” Please become a fan of our Facebook page (www.facebook.com/nmssarkansas), if you’re not already. We keep it current with updates and the latest information on Society events, activities, programs and research.
“Free From Falls” Fall Prevention Program Coming to Arkansas There is still time to register. Call TODAY! Studies indicate that falls are quite common among people with MS and are often associated with injuries and negative impact on quality of life. The National MS Society has developed a new fall prevention program - an eight-week curriculum, designed for people living with MS who are ambulatory but who may be at risk for falling.
programs
• Identify strategies they can employ to prevent falls and develop a fall prevention action plan. • Engage in and develop a home fitness plan that addresses balance, endurance, and strength, aimed at reducing fall risk. • and much more!
Contact Jessica Fisher at 501-663-8104 or Jessica.fisher@nmss.org to learn more about this program and determine if it is right for you. • Increase awareness of the prevalence of falls Free From Falls will be facilitated by rehabilitation among people with MS and the risk factors that professionals at the Physical Therapy Institute in may contribute to falls. Little Rock, Ark.
Through this course, participants will:
MS Entrepreneurs Grant Deadline – April 15 Applications for the upcoming MS Entrepreneurs grant cycle are due by April 15, 2012. For more information, and to obtain an application, visit www.MSEntrepreneurs.org. The deadlines throughout the rest of the year for submission are: April 15, July 15 and October 15. The National Multiple Sclerosis Society’s MS Entrepreneurs program rewards creative, innovative individuals who are passionate about developing new ways to improve the lives of people affected by multiple sclerosis. The MS Entrepreneur project launched in 2008, with grants awarded for projects in five different categories, all with the purpose of meeting an unmet need in the MS community. Anyone with the passion and time to identify a need and develop a solution can be an MS
Entrepreneur. Applications for MS Entrepreneurs grants are accepted year-round and are reviewed quarterly (next review deadline is April 15, 2012) by the volunteer engagement team. Please fill out our on-line application at MSEntrepreneurs.org. Included in the application are the criteria for selection and instruction on the application process. For more information, visit MSEntrepreneurs. org. MS Entrepreneurs is managed from the National MS Society’s Houston office. Applications are accepted from those in Texas, Louisiana, Arkansas, Oklahoma and New Mexico. MS Entrepreneurs is made possible by Kanaly Trust. TOLL FREE NUMBER 1 800 344 4867
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PROGRAMS
Don’t Let Inadequate Insurance Deny You
Co-pays. Deductibles. Insurance Premiums. Call them what you will, they often stand between access to healthcare or life-giving medications and the patients who desperately need them. The Assistance Fund has recently added a Premium Assistance Program for patients living with Multiple Sclerosis. The Assistance Fund is a leading 501(c) 3 nonprofit organization that helps to make advanced therapies and diagnostics available to the underinsured. More than just a funding resource, The Assistance Fund provides a continuum of services for those with chronic and life threatening illnesses. Options exist for patients who suffer from chronic or life-threatening disease to access health insurance coverage. However, many
individuals still struggle with the cost of such coverage. In an effort to truly make such insurance accessible, The Assistance Fund has added premium assistance to their portfolio of patient services. Help is available for individuals with MS who qualify under program guidelines to the extent that funds are available. Thanks to the generosity of donors, they are able to offer another form of financial assistance to patients living with MS. Their premium assistance program complements the co-pay assistance program services already being offered. To apply for assistance, please contact The Assistance Fund at 855-263-1772 or apply online at www.assistfund.org.
Out in the Community and on the Frontlines: MS Ambassadors & Community Health Representatives Online Training scheduled for Saturday, June 9
For the awareness-focused individual, there are two opportunities to get involved with the National MS Society: MS Ambassadors and Community Health Representatives. Both positions promote to the community the availability of programs and services, the strides being made in research, and the opportunities to be part of the MS movement. Ambassadors serve in a general awareness capacity, attending health fairs and making presentations to organizations and businesses. The Community Health Representative has a more targeted approach, building relationships with health care providers ranging from physician assistants to neurologists to social workers and all those in between. 6 I JOIN THE MOVEMENT: nationalMSsociety.org
The training session will be held online from 10 a.m. to 12 p.m. on June 9. To participate, please RSVP so the Society can contact you with the call-in and web link information. If you want to help raise awareness, sign up today! For more information on becoming an MS Ambassador, contact Beth Snyder at beth.snyder@nmss.org or (405)488-1300. For more information on becoming a Community Health Representative, contact Lee Kilborn at lee.kilborn@nmss.org or (469)619-4703.
Impact the Community: Volunteer
programs
By Beth Snyder So, let’s volunteer. Tailor your commitment to be As the year progresses, many of us fall away from attainable. Don’t set the bar too high. Volunteer the goals or resolutions we set for ourselves at the as often as you can and you will be amazed by onset of the New Year. We have big dreams, but the lasting impact. Need an opportunity to get unfortunately many of us also have unrealistic started? Join our team of outstanding volunteers expectations, which end up discouraging us. for an upcoming Walk MS event, or sign up to What if we approach creating a resolution spread awareness about multiple sclerosis as an differently? Instead of focusing so much on our MS Ambassador or Community Health individual successes how about we focus on Representative. Any contribution, big or small, community success? Volunteering provides a drives our passion to create a world free of MS! unique opportunity to congregate with others around a cause that we all want to advocate for. If you want to volunteer and help serve Arkansans After all, when we give back and support others with MS, visit www.volunteerms.org or contact we in turn feel uplifted and accomplished. Lisa Finkbeiner at 501-663-8104.
Self-Help Group Update By Jessica Fisher The Conway area is launching a new Self-Help Group! Meet and connect with others living with MS in the Conway area as we launch our Self-Help Group! Contact Julie Shock or Melissa Robinson at 501-327-9944 for additional information. They will meet for the first time, Tuesday, March 6 at 6 p.m. in the Lobby of Conway Regional Therapy Center at 700 Salem Rd. Conway, AR 72034.
Don’t see a group in your area? Call Jessica Fisher at 501-663-8104 or email her at jessica.fisher@ nmss.org to talk about starting a group. The National MS Society provides orientation, annual training, and on-going support and supervision to self-help group leaders. A mutually convenient schedule of phone calls, mailings and/or in-person meetings will be scheduled to provide you with the tools and support you need to manage your group. In addition, self-help group leaders receive a copy of the National MS Society Self-Help Group Leader Manual and a subscription to the quarterly national newsletter for self-help group leaders, COPE.
Self-Help Groups & Leaders
Greater Little Rock Area Stuart 501-835-6776 Merten 501-223-8427
Rogers Area Susie 479-633-6694 Sandra 479-685-4383
Batesville Area – Looking for a co-leader!! Jamie 870-834-3604
Northeast Arkansas Susan 870-239-2561
Springdale Area Jan & Hilde 479-445-6776
Pine Bluff Area MyKenya 870-592-0055
Van Buren Area Byna 479-650-6415 Doug 479-462-9024
Hot Springs Area Charles & Theresa 501-624-6033
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advocacy
MS Activists Took to the Steps of the Capitol at the Public Policy Conference
By Jessica Fisher and accessible parking issues for those living with On February 16, 30 MS Activists gathered at the an often invisible disability. This is a remarkable State Capitol in Little Rock to participate in our step as the activism team in Arkansas establishes 2nd annual Public Policy Conference. MS Activists our presence at the Capitol and makes our voices learned about communicating with legislators heard. The Arkansas Government Relations team during Joe Gagen’s engaging and exciting activism looks forward to keeping you updated on the training. The trained MS Activists then headed to connections they made that will inevitably develop the Capitol building to meet with their into Legislative Champions, public policy change Representatives and Senators. Nearly every person in 2013 and beyond; and truly making a was able to have an interaction with elected difference in the lives of those affected by MS. officials; despite the fact that the General Assembly adjourned early on both the House and Senate sides and that many of the legislators do not have offices. Society staff and volunteers alike were thrilled to begin developing those crucial relationships with their representatives. The conference also attracted media coverage from the most recognized newspaper in Arkansas, the Arkansas Democrat Gazette. If you would like to become an MS Activist, or Several connections to MS were discovered get involved in advocacy in Arkansas, call among the members during those meetings while or email Jessica Fisher at 501-663-8014 or activists shared their stories about living with MS jessica.fisher@nmss.org.
Opportunities for Giving, Sharing and Helping Are you a good listener and enjoy talking with people? Do you have a computer with internet access? Are you a seasoned writer interested in sharing your talents? If you answered “yes” to any of these questions, we have volunteer opportunities for you! Currently, the Society is interviewing for two volunteer positions across the region: Client Relations Specialist and MSConnection Contributing Writer. Client 8 I JOIN THE MOVEMENT: nationalMSsociety.org
Relations Specialists follow up with recently diagnosed people requesting support and information from the Society. The Contributing Writers will write articles for the MSConnection Magazine using information from event constituents, volunteers, and people living with MS. To learn more about these volunteer opportunities, contact Lisa Finkbeiner at lisa.finkbeiner@nmss.org.
newly diagnosed
SOCIETY WORKSHOPS A POINT OF CONNECTION BY HELEN RUSSON
Nadja (middle), diagnosed in 2008
From the moment the doctor told me, “You have MS,” everything changed. I felt a wide range of emotions: relief (because I didn’t have a brain tumor), anger (although I wasn’t sure who to be angry at) and fear of the future. What was this disease, and how would it impact me and the people who were important to me? I had no idea what my new life would be like, or how to get started on it.
presentation included a slideshow illustrating how white blood cells inexplicably start attacking the protective coating of the nerves (myelin sheaths). She had actually brought a ruptured electrical cord, exposing the frayed wires underneath. That simple prop was probably the most effective tool of my MS education. It helped me realize that if I’m having a hard time lifting my leg, it’s not because I’m lazy or weak-willed. It’s because of those wellmeaning (but very misguided) white blood cells. Afterward, the neurologist answered our questions about the day-to-day realities of living with MS. She also talked about some ongoing clinical trial studies and invited us to learn more about them. (I ended up participating in several such studies, all of which were very rewarding.)
Like many people, I first turned to research. This was in 1997, before the Internet was in full swing (at least at my house). So I went to the library, trying to learn about MS. I had heard about the National MS Society, but for days I was hesitant to call the number. Finally, I made the call, which led to my second-most important discovery of the year: my chapter was about to begin a series of in-person workshops for people who had just been diagnosed with MS. Each workshop featured a different guest speaker. On the first evening, a neurologist spoke in practical terms about the disease. Her TOLL FREE NUMBER 1 800 344 4867
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newly diagnosed
From Page 9
Each workshop was similarly organized. A speaker would give a presentation and then answer questions. We An in-person workshop at the were introduced Central North Carolina Chapter to experts in medicine, mental health, yoga and nutrition. At some point each evening, we broke into small groups to discuss what we had learned. I remember that one of the most fun and empowering activities was learning how to get a good workout while sitting down. (Who knew?) Throughout these programs, chapter staff told us about their services and resources, which included numerous opportunities to volunteer. I soon started volunteering and I haven’t stopped yet! New frontiers Of course, things have changed since 1997. While many chapters continue to offer in-person workshops similar to what I experienced, they have also begun exploring additional ways to help people newly diagnosed with MS connect to the Society— and to each other. “Almost every home now has access to the Internet and that seems to be a primary source for information, especially for tech-savvy people,” noted Mary Roberts, associate vice president of the South Central Region. “So we are doing our research to find new and creative ways to reach people.”
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Teleconferencing, videoconferencing and webcasts are a few options. “We plan to have a program in one site and broadcast that program to other sites across our region,” said Roberts. Some chapters are also trying out new formats for workshops, such as offering quarterly workshops with a nurse, or teaming up with an area MS center or university to provide workshops led by doctors. Peer support programs are another way to connect. Anyone newly diagnosed can call 1-866-673-7436 to have a confidential telephone conversation with a peer with MS through the Society’s MSFriends program. Or they can visit www.nationalMSsociety.org/ onlinepeerconnections to search through online profiles of trained peer support volunteers. Once matched, participants can connect confidentially and one-on-one via telephone or email. To discover the full spectrum of resources that the Society offers, call us or 1-800-344-4867 to be connected to an MS Navigator®. MS is not a virtual disease, and the computer isn’t a substitute for personal connection, but we are working to combine the best of both worlds, looking for ways to embrace the information age and to continue to provide the healing power of human contact. Helen Russon is a volunteer at the Oregon chapter.
living with ms
THE DIRT ON ADAPTIVE GARDENING
ledge or tabletop you can roll up to.” Reiser points out that people need little more than a patch of ground to get started—and that patch of ground can even be in a container. Nowadays, there are few limits to what can be grown in pots. “Breeders have come up with plants that are compact—and containers need less weeding,” Reiser points out. A garden open to all Enabling Gardens in Angleton, Texas, south of Houston, focuses on containers and raised beds, according to Cynthia Leonard, one of two dozen active volunteers. “We welcome groups and individuals, anyone who wants to learn how to do accessible gardening,” she says.
Staci, diagnosed in 1985
Gardening is one of the most popular hobbies in the United States, one that can benefit people both mentally and physically, as well as provide fresh and healthy food. “Gardening gives me control over something in a situation where I don’t always have control,” says Laurie Reiser, diagnosed with MS in 2003. “No matter where you live, or who you are, you can garden.” Reiser is a Colorado Master Gardener who teaches adaptive gardening in the western part of the state through the local extension office of Colorado State University. “Adaptive gardening is simply about creating your own space,” she emphasizes. “There are lots of reasons to adapt. You can put a garden at your height—on a patio, balcony, railing, steps, cinder blocks, window
Participants learn how to use rain barrels and raised beds, and to garden most suitably for their climate. The garden has 18 planter boxes of different sizes, some of which “have a horizontal board across the top where people can sit and work on the bed.”
Lettuce at Enabling Gardens Continued page 12 TOLL FREE NUMBER 1 800 344 4867
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living with ms
From Page 11
RESEARCH
a stool or folding chair on a deck, or under a tree, umbrella or arbor. Wear a hat, gloves and a cooling vest, or carry a spray bottle filled with cool water. (Call 1-800-344-4867 for information about cooling resources or visit www.msassociation.org/programs/cooling.) Set a timer to remind you when to take a break. Ergonomic gardening tools, such as add-on handles for trowels or extendable hoes, can help make gardening tasks easier. Go to www. abledata.com and search for “garden tools” to get an idea of what’s available. Laurie Reiser (left) and volunteers transfer plants to a raised bed.
It also features an A-frame trellis called a “cattle panel” that vines, squash and cucumbers grow on. “Someone in a wheelchair can roll under it and reach right up and pick fruits and vegetables,” says Leonard, who was diagnosed with MS in 1997. Leonard’s been gardening for seven or eight years, starting with flowers in pots, then moving on to tomatoes. She and her husband “picked beets and mustard greens in January, and we had fresh tomatoes for Christmas dinner,” she says. “It sure is nice to be able to step outside and get good fresh vegetables. I know how they’ve been grown and what’s been put on the soil. Gardening gives me a sense of peace and well-being.” Get prepared Gardening is a “hot” activity in more ways than one. To beat the sun, do outdoor work early or late in the day. Set up a shady rest area with
12 I JOIN THE MOVEMENT: nationalMSsociety.org
Reiser suggests enlisting a buddy, such as a friend or volunteer from a Scout troop or 4-H club, to help with tasks like hauling bags of potting soil. Local community gardens, botanical gardens or garden clubs may also offer communal space and resources. Search online for barrier-free, adaptive or accessible gardening or ask your public library if they have any books on the topic to get an idea of what’s possible. And then in a few months, enjoy the fruits—literally—of your labors!
national advocacy
KEEPING UP WITH HEALTH REFORM BY KIMBERLY CALDER
With various provisions of the Affordable Care Act (ACA) kicking in and legislative challenges to the ACA, it can be hard to keep up—particularly on the state level. Here are some Society-vetted sources for reliable and up-to-date information about the impact of the ACA in our area. The National Conference of State Legislatures at www.ncsl.org has a whole section on Health Reform that includes a series of brief reports on a variety of ACA-related topics. The site also includes a searchable database, updated every Tuesday, of state legislation related to the ACA. Search 2012 legislation by state, topic, keyword, status or primary sponsor. The National Academy for State Health Policy at www.statereforum.org offers an online network called State Refor(u)m, which enables direct connection and informationsharing between policymakers, activists and others working on health reform implementation. The federal government’s official site on the ACA at www.healthcare.gov is the best source for hard numbers on the ACA. Click on “The Healthcare Law and You,” then “Implementation
Resources” to view an interactive map of the U.S. Here you can click to see, for example, how many young adults are now insured in each state, the number of residents who no longer face a lifetime limit on their insurance coverage, the amount of new funds for community health centers and more. To follow changes in ACA legislation and other public policy issues that specifically affect people with MS, check in with Society MS Activists at Twitter @MSActivist and visit www. MSactivist.blogspot.com. The Society also regularly updates Frequently Asked Questions on its website at www.nationalMSsociety.org/ ACAFAQ, as more is understood about how the law could impact people with MS. Kimberly Calder is the Society’s director of Federal Health Affairs and Insurance Policy.
MS ACTIVISTS HELP ADD MS TO COMPASSIONATE ALLOWANCES LIST Thanks to hard work by Society activists, an aggressive form of MS now qualifies for the Compassionate Allowances Program, which expedites the review of Social Security Disability Insurance (SSDI) applications at the Social Security Administration. Thanks to passionate and articulate testimony by MS Activists Dr. John Booss and Yvonne Brown at a March 2011 Autoimmune Hearing held by the Social Security Administration, “malignant MS” was added to the Compassionate Allowances List, allowing people with more aggressive forms of the disease to qualify for SSDI more quickly.
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research
SURVEY SAYS WALKING ISSUES IMPORTANT TO ADDRESS
Susan Cohn-Child, diagnosed in 1995, walks with son Zach
Seventy percent of people with MS who have difficulty walking see that as the most challenging aspect of managing their disease, according to a recent survey sponsored by the National MS Society and Acorda Therapeutics, maker of Ampyra, a drug intended to improve walking.
Respondents to the survey reported that problems with mobility restrict their daily activities and affect their emotional and financial well-being. Some 60% of adults with MS who experience difficulty walking have fallen; for a third of them, a fall resulted in an injury.
RESULTS IN FOR POTENTIAL MS THERAPIES • In a two-year Phase III trial, the oral MS therapy BG-12 significantly reduced—by up to 51%— the average number of annual MS relapses. More than 1,400 people with relapsingremitting MS participated in the study. BG-12 is thought to inhibit the immune cells and molecules that are involved in MS attacks on the brain and spinal cord. This study should help to define further the safety and promise of BG-12 as a potential therapy for relapsing MS. • The experimental intravenous MS therapy alemtuzumab significantly reduced relapse rates and the worsening of disability in a two-year Phase III study that compared alemtuzumab to Rebif. The study, called CAREMS II, involved 840 people with relapsingremitting MS. The FDA has fast-tracked alemtuzumab, which should speed up future review.
• A study of 324 patients comparing the MS oral therapy teriflunomide with Rebif found no significant difference in the numbers of While 65% of those surveyed reported walking participants in each group who experienced difficulties or trouble with balance, 40% events defined as treatment failure. “rarely or never” discussed the issues with their Teriflunomide is thought to prevent damage doctor. to the nervous system by immune cells. A previous phase III trial was more successful and “Clearly we need to encourage and empower three others are ongoing. The FDA is reviewing people with MS to discuss walking impairment an application for marketing approval of with their doctor, including newly diagnosed teriflunomide. patients who may be experiencing only mild problems with walking or balance difficulties,” To stay current on MS therapies in the pipeline said Nicholas LaRocca, PhD, vice president for for FDA approval, sign up for MS eNEWS at Health Care Delivery and Policy Research at www.nationalMSsociety.org/signup. the Society. 14 I JOIN THE MOVEMENT: nationalMSsociety.org
Ways to give
DO IT YOURSELF FUNDRAISING GETS BOOST
DIY event, MS Cup Race, Minnesota Chapter
A family in Florida who says they like to “eat, drink and throw a good party” hosts a casino night on behalf of the National MS Society. A fellow in Minnesota sponsors an annual fourday event for four-wheeling enthusiasts to ride on trails in the middle of the woods. Other folks have hosted golf tournaments, sailing races, dinner parties, bake sales, hoops for hope basketball and even a strongman competition, a bike ride in high heels and a tabletop decorating contest. A Wall Street–based poker tournament raised over $850,000, but a $200 bake sale is equally appreciated. Diverse as they are, these events are all Do It Yourself (DIY) Fundraising, where people committed to raising awareness and money for the MS movement are limited only by their imagination. DIY fundraising has been going on a long time, but what’s new is an online tool at www.doityourselfms.org, “which gives the same resources as we give to Bike MS and Walk
MS participants,” according to Rachael Nuwash, DIY project manager for the Society. These resources include a comprehensive toolkit that covers everything someone who is organizing a DIY event needs to know: establishing a timeline, budgeting, how to make an event memorable, where to hold it, publicity, finding sponsors and volunteers, tips for the day of the event, FAQs and much, much more. People can find out what lessons others have learned and how to create a committee—a core group that will support the effort and whose talents can be utilized. (For example, a friend who’s a graphic designer can design the invitation.) The toolkit also includes flyers, badges and email signature images to download. “The online tools are very intuitive,” said Nuwash, so organizers can easily and quickly reach out to friends, family members and co-workers.
DIY event, Kids for a Cure, New Jersey Metro Chapter
“The people who like to organize do-it-yourself events are going to do it no matter what,” Nuwash noted. “Their commitment, creativity and intense connection to the Society are like no other. In turn, we’re committed to supporting people who want to do something now.” TOLL FREE NUMBER 1 800 344 4867
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Arkansas Chapter
National Multiple Sclerosis Society 1100 N. University, Suite 255 Little Rock, AR 72207 POSTAL CARRIER – DATED MATERIAL PLEASE DO NOT DELAY
Save the Date WALK MS 2012: April 7 - Texarkana - Bobby Ferguson Park April 14 - Little Rock - Rivermarket Riverfront Park April 21 - NW Arkansas - Lake Fayetteville (Fayetteville) April 28 - Jonesboro - Downtown Jonesboro May 5 - Hot Springs - Exchange Street Parking Plaza