ARKANSAS
M OV I N G TO WA R D A W O R L D F R E E O F M S
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Bike MS: Ride the Rock
Beautiful Weather Graced Cyclists and Volunteers at Bike MS Arkansas: Ride the Rock presented by Toyota By Lisa Brown Arkansas’ best supported bicycle ride and one of the largest fundraising events for the National MS Society in Arkansas pedaled out from the beautiful River Trail September 10 to help create a world free of MS. The 26th Annual Bike MS Arkansas: Ride the Rock, presented by Toyota took place September 10-11. More than 85 participants and 75 volunteers took the slogan “Move it” to
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heart on this two-day, 159-mile test of endurance. The route crossed the Big Dam Bridge and Two Rivers Bridge; the first organized bike ride to be able to use both bridges since Two Rivers Bridge opened in July. The 2011 ride consisted of a new route changing from Petit Jean Mountain, which had been its home for the last eight years. Final fundraising ends September 30, and we are well on our way to reaching the 2011 target of $70,000. Continued page 3
Celebrate Your Caregiver! Scholarship Applications PAGE 7 Available PAGE 8
Pediatric MS Studies get Federal Support PAGE 12
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 Vice President • Paula H. Cortner Development Manager • Lisa Brown Programs & Services Manager • Brooke Teeter Programs & Services Coordinator • Jessica Fisher Development Coordinator • Lindsay Wiley Strategic Philanthropy Coordinator • Jillian Briggs Newsletter Editor • Brandi Davidson 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. ©2011 National Multiple Sclerosis Society, Arkansas
Vice President’s Impressions Dear Members, Fall is our busiest business time of year. What’s our business? Trying to get out of business. Yes, we officially want to work our way out of business, but how can we do this? There is a new campaign aimed at doing just that, it’s called: NOW: An MS Research Revolution! NOW (No Opportunity Wasted) is a 3 throng approach to ending MS forever. • Stop – we have to stop the disease activity and prevent progression in people who already have MS. • Restore – We must restore all function that has been lost due to myelin damage in the Central Nervous System • End – We must eliminate MS forever and prevent it from ever occurring again in the future. Our research fundraising goal is to raise $250 million for research by the end of 2015 and you can be part of this exciting campaign and become an MS Research Champion. All you have to do is: • Go to our website & click on the MS NOW page • Watch a New NOW research Video • Participate in a New online training - it’s short and packed with knowledge • Become a Champion - you will receive an electronic Champion certificate and a handy reference card. Thank you for joining us in the revolution and in our vision to create a world free of multiple sclerosis. Together we can get this done and get on to other business. Warm Regards,
Paula H. Cortner 2 I JOIN THE MOVEMENT: nationalMSsociety.org
P.S. MS NOW. No Opportunity Wasted. Used with permission from NOW, Inc. and in partnership with Phil Keoghan, tireless advocate and MS Research Champion.
Riders departed downtown North Little Rock at River Trail Station covering 83 miles over challenging hills and countryside. Day one ended back at the River Trail Station where great food and drink along with cheering family and volunteers greeted our cyclists. The party continued into the evening with an amazing and inspiring program recognizing top fundraisers and dedicated volunteers. The sponsoring Bike MS bike shops donated large dollar items for the first ever live auction at the evening event. The auction raised over $2000 on six items! From Page 1
challenge faced by those with MS. news Deep appreciation goes out to everyone who helped make Bike MS Arkansas: Ride the Rock presented by Toyota a huge success in the quest for a world free from MS.
After a hearty pancake breakfast, cyclists worked out the stiffness and began another 75-mile trek from the River Trail Station and around Lake Maumelle. Volunteers greeted each cyclist with a commemorative medal around their neck as Information regarding Bike MS Arkansas: Ride family, friends and MS clients cheered their the Rock presented by Toyota may be found accomplishment. online at bikeMSarkansas.org. You may also call The ride proved, once again, to be a taxing test of the National MS Society at 1-800-344-4867 (press 2) for information on local Bike MS rides. endurance, but pales in comparison to the daily
Volunteers Answer the Call to Help Their Communities By James Black Even in uncertain economic times, volunteerism is thriving in the South Central United States. According to a comprehensive Volunteering in America report released in August from the Corporation for National and Community Service, Oklahoma is the top state in the region, with an average volunteer rate of nearly 30%. It is followed by New Mexico (26.2%), Texas (23.8%), Louisiana (21.9%) and Arkansas (21.4%). Utah is the top state in the union with a volunteerism rate of 44.5%. National Results More than 62 million Americans on average volunteered 8.1 billion hours in 2010. The median number of hours served per volunteer
rose from 50 in 2009 to 52 in 2010. According to the report, the total estimated value of volunteer service in 2010 was $173 billion, based on the average value of a volunteer hour, which was estimated at $21.36 last year. It was noted that members of Generation X – those born between 1965 and 1981 – have more than doubled their volunteer rate since 1989. In 1989, 12.3% of this group volunteered with an organization; by 2010, the rate had increased to nearly 30%. Across the United States, volunteers are helping organizations – particularly nonprofit agencies such as the National MS Society – serve the country’s most vulnerable citizens. As nonprofit Continued page 4 TOLL FREE NUMBER 1 800 344 4867
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organizations continue facing budget challenges and fewer resources, the contributions made by volunteers become more vital than ever.
Oklahoma. In Texas, rural volunteers worked an average of 64 hours, compared with 56 suburban hours and 48 city hours.
Most volunteers nationally devoted their time to fundraising efforts (26.5%), followed by collecting or distributing food (23.5%) and general labor (20.3%).
City Comparisons
On a national level, people volunteered most often with religious organizations (35%), followed by educational facilities (26.7%) and social service groups (14%). Geographically, most U.S. volunteers in 2010 lived in rural areas (27.9%), narrowly outdoing those in the suburbs (27.5%) and outpacing residents in urban centers (22.9%). South Central States Results When examining volunteerism for residents in Arkansas, Louisiana, New Mexico, Oklahoma and Texas, the Lone Star State was the only one in which fundraising was not the top volunteer activity. Collecting and distributing food (25.7%) was the top job for Texas volunteers, followed closely by fundraising at 24.9%. Mirroring the national trend, state volunteers chose to help religious organizations (a range of 38-43% across the five states), followed by educational and social service groups. Geographically, those in Texas’ suburban and rural markets were nearly neck-and-neck. More than 25% of Lone Star volunteers lived in the suburbs, with 24.9% in rural communities and 22.3% in urban markets. Across all five South Central states, however, rural volunteers contributed the most hours, ranging from 52 hours in Arkansas to 72 hours in 4 I JOIN THE MOVEMENT: nationalMSsociety.org
In the five South Central States, Oklahoma had the top two volunteer rates per city: Oklahoma City (32.1%) and Tulsa (31%). The remaining top 10 South Central cities based on volunteer rates were Dallas (27.7%); Albuquerque, N.M. (26.7%); Baton Rouge, La. (25.6%); Little Rock, Ark. (25.3%); New Orleans, La. (24.4%); Austin (24%); San Antonio (22.5%); and Houston (22.5%). Fundraising was the top volunteer activity in Austin; El Paso; Lafayette, La; Little Rock; New Orleans; Oklahoma City; and Tulsa. The collection, distribution and serving of food was the top job for volunteers in Baton Rouge, Dallas, Houston and San Antonio, while tutoring was the top activity for Albuquerque, N.M. and Fayetteville, Ark. volunteers. Wherever they call home, South Central volunteers are making powerful differences in their communities. Visit www.VolunteeringinAmerica.gov to read the complete volunteering report. Learn more about volunteering locally with the National MS Society and helping persons living with MS in your community. Visit www.volunteerMS.org or call 1-800-344-4867 (press 2). James Black is the editor of MSConnection and a Strategic Communications Specialist in the Society’s Houston office. He can be reached at james.black@nmss.org.
Dinner of Champions – A Memorable Evening
news
By Jillian Briggs On August 25 the National MS Society held our annual Dinner of Champions presented by Stephens, Inc. at the Argenta Community Theatre in North Little Rock, Ark. We had a DOC Committee consisting of 12 members, which included the following: Chairman Rick Fleetwood, Shane Broadway, Debbie Broadway, Doug Coy, Gary Davis, Lynda Dixon, Jimmie Lou Fisher, Vincent Insalaco, Debbie Kyle, Rex Kyle, Senator Mary Anne Salmon and Judy Tennenbaum.
We really wanted to change things up this year, so first thing we did was book the event at a local theatre. While being served dinner, we watched amazing performances by talent of the ACT Ensemble. Nearly 130 guests showed up to support the National MS Society and our special honorees, and the event raised $76,000. With all of the new changes to make our program more unique many people left speaking about how memorable the dinner was and feeling more informed about the effects that MS has on our state. Big thanks to our sponsors of the evening: Landers, Argenta Community Theatre, Snell, Glazer’s, Allegra, Capers, ITE, 103.7 The Buzz, Bank of the Ozarks, First Security, Shane and Debbie Broadway, The Saline County MS Group, Jimmie Lou Fisher, Doug Coy, Arkansas State University, Senator Mary Anne Salmon, Blue Cross Blue Shield, and our Title Sponsor Stephens, Inc.
Our honorees were Shane and Debbie Broadway. Shane and Debbie are Arkansas natives and have been long time supporters of the National MS Society since Debbie was diagnosed with MS in 1991. They have both dedicated a lot of their time to educating others of the effects of this disease and helping those who live with it.
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news
A Year in Review – How Individual Giving Makes a Difference By Kristen Stubbs
they can now take a simple pill called Gylenia instead of using a needle and giving themselves an I am always amazed at how quickly time flies the injection. The development of this drug was made older we get. Remember when as a little kid you possible by donors who have given generously thought Christmas would never come? Well, here throughout the years. We can’t make a difference we are again winding down the year and reflecting without you. once more on where we have been, where we are now, and where we will be going in 2012. The various offices of the South Central Region continue to provide many important and life At the National MS Society, we are going places! changing services to people living with MS, their We are going places with our research, with our families and the healthcare providers who serve medication development, with our events, and them. We continue to help people in financial with our programs and services for people living crisis, hold wellness and exercise classes with MS. Our new MS Research Revolution; No throughout the region, provide expert information Opportunity Wasted initiative to raise $250 and referral services as well as execute walks and million by 2015 is in full force and we are busy bike rides which serve to provide a rallying point identifying donors who can make that lead gift to for people who want to help. Again, all of these fund crucial research to Stop the progression of programs and events are possible because of the MS, Restore lost function, and End MS forever. support from our fundraisers and donors. Stop * Restore * End is our new mantra around the Society and I invite you to become a Research As you consider your year-end gift, please keep in Champion along with thousands of other people mind the tens of thousands of people in our region who want to do something about MS NOW! who live with MS. Please keep in mind the many opportunities that are available for volunteers and To see the latest and greatest research initiative donors. Please keep in mind that your tax from the Society go to http://www. deductible gift may provide help for someone in nationalmssociety.org/research/now-champion/ crisis. And lastly, please keep in mind that MS index.aspx and take the 10 minute Research stops people from moving. We exist to make sure Champion course to join thousands of other it doesn’t. people who are a part of the MS Research Revolution. Kristen O. Stubbs is Regional Vice President, Speaking of research, what a difference a year can Strategic Philanthropy for the National MS make. In 2011 we saw the very first oral disease Society. If you would like to make a year-end modifying drug come to market. What a donation please call her at 713.394.2991 or email breakthrough! For some people living with MS her at kristen.stubbs@nmss.org.
6 I JOIN THE MOVEMENT: nationalMSsociety.org
Celebrate Your Caregiver! November is National Family Caregiver Month The National MS Society supports the National Family Caregivers Association (NFCA) in their efforts to recognize family caregivers through our endorsement and recognition of November as National Family Caregivers (NFC) Month. This is a nationally recognized time set aside every year to thank, support, educate and celebrate more than 50 million family caregivers across the country! Many families and individuals are caregivers to a loved one. These caregivers can be sons, daughters, parents, spouse, siblings, other relatives or even a friend of the person needing assistance. According to the NFCA, the service provided by Family Caregivers represents 80% of all home care services, which is conservatively valued at $375 billion a year. The National MS Society knows that being a Caregiver is a huge responsibility that comes with joy, frustration as well as sacrifices and we
Programs
want to give something back to Caregivers who have given so much, and given up so much to support others. To help us do this, please submit the name of your Caregiver that you would like us to recognize by email to donna. bolain@nmss.org or call 800-344-4867, option 1, by October 26, 2011. Additionally, if you would like to tell us more about your Caregiver, we’d love to hear those stories as well, submit 150 words or less to the email listed above or fax those to 918-488-0913.
Start a Self-Help Group By Jessica Fisher The Arkansas office currently supports six selfhelp groups throughout the state. Self-Help Group leaders facilitate meetings in Little Rock, Hot Springs, Paragould, Rogers, Pine Bluff and Van Buren. Groups are in the process forming in Conway and Russellville. Self-Help Groups are a vital part of our social and support programs. Self-Help groups in the Society bring people together who share a common life experience (living with MS) for support, education and mutual aid. They share a belief that positive personal change can happen through individual effort with the support of others. Leaders of
chapter-affiliated self-help groups are valuable volunteers for the National MS Society and perform an integral role in facilitating this process. Each self-help group is the result of a collaborative partnership between the group and the chapter. 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 getting a group started! National MS Society chapters provide orientation, annual training, and on-going support and supervision to self-help group leaders. A mutually convenient schedule of Continued page 8 TOLL FREE NUMBER 1 800 344 4867
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programs
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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. Becoming a Self-Help Group Leader or Co-Leader can be a very positive and rewarding experience. Hear it from the current leaders themselves. The most rewarding thing about volunteering my time as a Self-Help Group Leader is… “Bringing people with MS together & seeing the connections they make with one another. Watching the obvious joy of someone realizing that they are not alone. Meeting others who understand that we
all face similar challenges, overcome similar obstacles & are willing to help each other.” -Byna, MS River Valley Support Group “Welcoming newly diagnosed people. Being able to support them as they start their journey with MS, and be able to give them information they can trust, and to let them know they can still live a very fulfilling life!” -Stuart, Little Rock Self-Help Group “I have learned that I can make MS a positive life experience by transcending it beyond acceptance. I can do this by helping fellow MSers to deal with the illness. I can help them and myself reduce fear about current and future MS symptoms by finding speakers who can educate us about the reality of MS and how to deal with it.” -Merten, Self-Help Group leader
2012 Scholarship Applications Available Online The National MS Society offers a scholarship program for students living with multiple sclerosis or who have a parent living with MS. Applicants must be planning to attend an accredited post-secondary school for the first time and to take at least six credit hours per semester leading to a degree, license or certificate. Each recipient is selected based on financial need, academic performance, compelling personal or family circumstances, and an applicant’s essay on the impact of MS on his or her life. Starting Oct. 1, 2011, scholarship applications for 2012 are available online at www. nationalMSsociety.org/scholarship. There is no application fee for Society scholarships. Completed applications and supporting 8 I JOIN THE MOVEMENT: nationalMSsociety.org
materials must be submitted by January 2012; visit the Society website in October for the specific deadline date.
Advocacy Update By Jessica Fisher The Arkansas office continues to grow and expand our statewide advocacy program! During the August Recess, our Congressional Representatives and Senators come home to Arkansas to meet with constituents and discuss policy priorities. MS Activists had successful meetings with Congressman Tim Griffin (R-2), Congressman Steve Womack (R-3) and Senator Pryor (D-AR) to advocate for Improving Access to Neurological Care (H.R. 2224/S. 597). This legislation will correct an omission in the Patient Protection and Affordable Care Act (H.R. 3590), which led to the exclusion of neurology from the list of specialties eligible to receive the Medicare payment incentives. Currently, this bill has not been sponsored by any members of Arkansas’ Congress.
advocacy
Want to get involved in MS Activism? If you haven’t already, sign up online to become an MS Activist at www.msarkansas.org to receive advocacy updates and action alerts. Call or e-mail Jessica Fisher at 501-663-8104 or Jessica.Fisher@ nmss.org and talk about: • Visiting and calling state legislators • Conducting research on state and local policy issues • Facilitating meetings with those connected with legislators and decision makers • Becoming a part of our statewide Government Relations Committee • Recruiting MS Activists • Making a Story Card to use in advocacy activities
Nominees for Board of Trustees Now Being Accepted Individuals interested in being considered for nomination to the South Central Board of Trustees should submit a letter of interest and a biography, along with name, mailing address, email address and phone number. Nominees will be notified of board member expectations, responsibilities, fiduciary and time commitments. Final candidates will be interviewed by a member of the Governance Committee.
Nominations for the Board of Trustees must be submitted by Nov. 15, 2011 to: Mark Neagli National MS Society 8111 N. Stadium Drive, Ste. 100 Houston, TX 77054
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Living with MS
WALK THIS WAY: USING WALKING POLES Potential tools in the walking arsenal that people with MS might want to consider are walking poles. These are adjustable-length ski pole–like shafts made of very light metal (such as titanium, carbon fiber or aluminum) with Courtesy of Jayah Faye Paley, handles (called www.PolesForMobility.com grips). Many have adjustable wrist straps and tips designed for walking on flat, steep or rugged terrain. Because they are used in pairs, poles—which lie between a cane and a walker on the continuum of assistive devices—offer increased balance, steadiness and support, according to Sue Kushner, PT, MS, associate professor of Physical Therapy, Slippery Rock University, Penn., who has spent much of her career working with people who have MS. “You can move a little faster, because bilateral support gives more stability and speed,” she said. Studies suggest that poles reduce the force on joints and help distribute the body’s weight better, meaning less work for the legs, knees,
10 I JOIN THE MOVEMENT: nationalMSsociety.org
feet, hip and back. Less stress on the lower body translates into less fatigue, a frequent symptom of MS. “If you use poles instead of a cane, you may conserve energy,” Kushner said. Jayah Faye Paley grew up in Florida, and when she moved to northern California in her 30s, took up mountain hiking. She found she “didn’t have the natural footing of people who grew up with it.” She does not have MS. (Continued on next page.)
Pole primer “Talk to your physical therapist before you try them,” physical therapist Sue Kushner cautioned. Then choose poles based on your height, weight, hand size, issues (balance, for example) and your fitness or mobility goals. “Make sure they’re the proper height— about waist level, a little higher than a cane—and a comfortable weight. If you’re using them all day, you do care about their weight, especially if you have any weakness in your wrist muscles,” Kushner added. One drawback is that you can’t carry much with poles in both hands. However, a backpack is one possible solution. Good poles cost about $90 to $140 and should last a lifetime.
Living with MS
One day she met a fellow using poles, who was, she said, “poetry in motion on the trail.” She was so taken with both him (they married in 2003) and the poles that she made a career of teaching people to use them optimally. An ACE-certified personal trainer, Paley has created two training DVDs, including one for people with mobility challenges. “With minimal training—usually less than an hour— you can walk more fluidly and with a natural pattern because you recruit and strengthen the muscles that support and elongate the spine,” she said. Other benefits, Paley added, are confidence and focus. “You are walking for exercise, not just strolling—the poles are consistent reminders to move better.”
WALKERS: WHAT’S YOUR BAD WEATHER PLAN? If walking is your favorite exercise, now is the time to plan ahead so winter doesn’t disrupt your regimen. Sue Kushner, PT, MS, recommends the following: • In snowy or icy weather, avoid walking outdoors—even to take Fido out. A sudden tug on a slick sidewalk can send you flying. “Even a little fall can really set you back,” Kushner said. “If you twist an ankle or tear a ligament, it can lay you up for a couple of months, plus you’ll have to do rehab. If you’re already weak, it might even put you into a wheelchair.” • Consider instead the great indoors! Mallwalking. Nearby gyms or YMCAs. Some offer monthly memberships that you can use during winter weather. Public schools or colleges. Call to find out if they are open to walkers in the evening. • Consider using a walking device for extra assistance when it’s cold.
Knowledge Is Power is a six-week, free, at-home educational program for people who are newly diagnosed. Mail or email formats. To register, call 1-800-344-4867, or visit www.nationalMSsociety.org/knowledge.
• Always choose supportive footwear with a good tread. • Take advantage of clear days to get out; look for parks where walking paths have been cleared. • Depending on your balance and skill level, cross-country skiing or ice skating can be fun and challenging ways to take advantage of winter weather.
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NE S national NEWS
PEDIATRIC MS STUDIES RECEIVE FEDERAL SUPPORT The Society’s network of Pediatric MS Centers has been awarded a fiveyear grant from the National Institutes of Health to study genetic and environmental risk factors for MS in children with the disease. The study will enroll children and teens with MS and matched Children with MS attend Champ Camp, held at Camp For controls without All in Burton, Tex. Photo: Chase MS for a single Shull Artisan Portrait Studios, visit to one of 10 courtesy of the South Central centers around Region. the country— in California, New York, Massachusetts, Alabama, Minnesota, Texas, Pennsylvania and Washington. Four new centers are part of this project in addition to the six created with support from the Society’s Promise: 2010 campaign. To learn more about the study including referral information, please email janace.hart@ucsf.edu or call 415-5142476. For more information about pediatric MS, visit www.nationalMSsociety.org/ pediatricMS. 12 I JOIN THE MOVEMENT: nationalMSsociety.org
CCSVI STUDIES—ONEYEAR UPDATE The first-year progress reports from seven Society-funded studies of CCSVI, or chronic cerebrospinal venous insufficiency, were released July 14, 2011. The research teams report being on track in collecting objective and comprehensive data. The studies were launched with a more than $2.4 million commitment from the MS Society of Canada and the National MS Society. The research teams have recruited a broad spectrum of people with and without MS. Already more than 486 people have been scanned using various imaging technologies. Only by refining imaging methods can investigators more reliably validate if a person actually has CCSVI and better understand its relationship to the MS disease process. The full results, to be released after completion, will help guide future steps, including the development of clinical trials to test whether treating CCSVI is safe and effective for people with MS. In the meantime, several of the teams will present preliminary results at medical meetings later this year. To read more about the studies and to get the news of results, visit www.nationalMSsociety.org/ccsvi.
Get the latest! Visit www.nationalMSsociety.org/ signup to sign up for monthly MS eNEWS.
national NEWS
SOCIETY PRESIDENT AND CEO JOYCE NELSON TO RETIRE
• Increased the Society’s advocacy efforts through the establishment of the MS Caucus in Congress; • Inaugurated financial assistance programs in all Society chapters; and
RESEARCH
After 28 years with the National MS Society, and seven as its president and CEO, Joyce Nelson is retiring as of October 1, 2011. “Although the time has come for me to formally pass the torch of leadership to another, my love for this work and for the people with whom I’ve served will never fade,” she said. “People living with MS have touched my life every day for the past 28 years, providing inspiration for the important work to be done. When the final answers are found and the race is won, I can assure you that I will be there with you to celebrate a world free of MS.” Nelson began her Society career in 1983 as a READaTHON coordinator in the Northern California Chapter and rose through chapter and national leadership positions to become the Society’s president and CEO in 2004.
find and support young scientists doing essential MS research;
• Expanded the nationwide scholarship program. “I know you will join me in wishing Joyce Nelson and her family all the best as they enter this new phase of their lives,” said Thomas Kuhn, chair of the National Board of Directors of the National MS Society.
LIVE FULLY, LIVE WELL – THE HOLISTIC APPROACH TO MS
A new multimedia wellness program, a collaboration between the Society and Can Do MS, launched this June. Called Live Fully, Live Well, it is designed for people with MS and their support partners, and deals with a wide range of topics covering health, relationships and quality of life. Through December 2011, Live Fully, Live Well is offering in-person workshops, videos, and monthly webinars presented by physical and occupational therapists, MS nurse Among her many accomplishments, Nelson: educators, dietitians and other MS experts. The • Founded Fast Forward, a research subsidiary of June and July webinars are already archived the National MS Society that supports clinical on the National MS Society website and can research and fast-tracks clinical trials of MS be accessed at any time. All the subsequent therapies and treatments; webinars will be available on the Society’s website shortly after the program’s air date. For • Established six pediatric MS Centers of details and schedules from August on, log on Excellence; to www.nationalMSsociety.org and search • Created the MS Navigator™ program to provide for “live fully live well.” To register for in-person personal assistance to people with MS; workshops, call Can Do MS at 1-800-367-3101, or email info@mscando.org. • Expanded the Society’s fellowship program to TOLL FREE NUMBER 1 800 344 4867
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CH research
STRESS AND MS
MS. Although this sounds persuasive, Dr. Riise cautions that more research is needed to definitively exclude stress as an MS risk factor.
VITAMIN D IN AFRICANAMERICANS WITH MS
Stress may play a role in exacerbating MS flares, but does it cause the disease in the first place? A new study suggests that stress does not appear to increase the risk of developing MS. The study, published in Neurology, May 31, 2011, focused on two large groups, totaling almost a quarter million women, from the Nurses’ Health Study, which has followed a large number of female nurses for decades. The nurses were asked to report on general stress at home and at work, and also any physical or sexual abuse as children or teenagers. The investigators, led by Trond Riise, PhD, University of Bergen, Norway, compared the answers between those nurses who had developed MS and those who had not. They also took into account age, ethnicity, smoking habits and other variables that have been linked to an increased chance of developing MS. The researchers found that those who later developed MS had not responded significantly differently from those who had not developed 14 I JOIN THE MOVEMENT: nationalMSsociety.org
Research increasingly points to low levels of vitamin D in the blood as a risk for developing MS. A new study, [www.neurology.org/ content/76/21/1824] funded in part by the National MS Society, does show that AfricanAmericans with MS have lower levels of vitamin D than African-Americans who don’t have MS. Researchers Jeffrey Gelfand, MD, Ari J. Green, MD, and colleagues at University of California, San Francisco, found that of the group with MS, 77% were deficient in vitamin D, compared to 71% of those without MS. The study, based on examining 339 African-Americans with MS and 342 without the disease, found no link between vitamin D levels and how severe the disease was. African-Americans in general have an increased risk for low vitamin D levels, possibly because their skin has large amounts of melanin, which acts as a filter of ultraviolet light. This in turn limits how much vitamin D the body can produce. Study participants with a higher proportion of European genetic ancestry were less likely to have low vitamin D levels than participants with a lower proportion of European ancestry. The risk of MS in African-Americans is about half that of Caucasians. However, the same researchers previously reported that AfricanAmericans tended to have a more aggressive course of MS than Caucasians, a higher risk for mobility impairments, were more likely to
CH research
CLINICAL TRIALS UPDATE The Society’s annual list of clinical trials in MS is now available online at www. nationalMSsociety.org/clinicaltrials. It features 130 studies that are in progress or recently completed. These cover neuroprotective agents; symptom medications; rehabilitation interventions such as cycling for improving MS-related depression, mobility and cognitive function; and more. develop MS later in life and were at higher risk for symptoms in the optic nerve and spinal cord.
A LINK TO HERPES? Viruses are well recognized as causes of nervous system damage and inflammation, so it is possible that a virus may set off MS. Various types of evidence point in particular to an association between MS and EpsteinBarr, a herpes virus that causes infectious mononucleosis and other disorders. Now, a new study hints at another possible link, this time between herpes zoster and MS.
More than 52,000 volunteers have participated or are currently participating in these studies. Their participation—and yours—makes it possible to look forward to new therapies for MS.
OK TO MIX PREGNANCY AND MS Research continues to confirm it’s OK to mix pregnancy and MS.
A study published online in Annals of Neurology June 27, 2011, compared 432 births to women with MS and 2975 births Researchers in Taiwan have reported that people to women without MS, confirming previous who experienced an attack of the virus-triggered findings that, overall, the women with MS had herpes zoster—which usually shows up as the normal pregnancies. The mean birth weight skin rash known as shingles—were more than three times as likely to develop MS over the next and gestational age of babies did not differ year than individuals who did not have an attack. and women with MS were not at greater risk The study, reported in The Journal of Infectious of adverse deliveries, including Caesarean sections. Diseases (6/7/2011), used a large data set of Taiwanese people. However, since people of It was the first study where researchers were Chinese genetic background are at lower risk able to control for other factors that could for MS than Caucasians, the researchers do not affect outcomes, such as disability levels, know yet if this finding will translate to other obstetrical history and body mass index. populations.
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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 - Joe Mack Campbell Athletic Complex May 5 - Hot Springs - Exchange Street Parking Plaza