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Moving Toward A World Free of MS Winter 2011

The Official Magazine of the National Multiple Sclerosis Society: Lone Star

CAMPING IT UP FOR A GOOD CAUSE In Good Company Corporate Corporate Partners Partners are are on on aa Mission Mission

Foot Drop Research Makes Big First Step Donor Bequests Leave Lasting Legacy


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

The Official Magazine of the National Multiple Sclerosis Society: Lone Star

The official magazine of the National Multiple Sclerosis Society: Lone Star Austin • Dallas • Fort Worth • Houston • San Antonio

1-800-344-4867 Board of Trustees Chairman Brad Robbins Secretary Mark McLeland Treasurer Gerald Merfish Regional Executive Vice President Mark Neagli MSConnection Editor James Black © 2011 National Multiple Sclerosis Society: Lone Star

multiple sclerosis and about current research that may one day reveal a cure.

MS STOPS PEOPLE FROM MOVING

WE EXIST TO MAKE SURE IT DOESN’T.  JOIN THE MOVEMENT

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.


Winter 2011 Volume 5 • Issue 1

TABLE OF

The Official Magazine of the National Multiple Sclerosis Society: Lone Star

CONTENTS

The Official Magazine of the National Multiple Sclerosis Society: Lone Star

8 Camping It Up For A Good Cause

6 Donor Bequests Leave Lasting Legacy

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In Good Company: Corporate Partners are on a Mission

Watch It Live: 2011 Annual Meeting. . . . . . . . . . . . 4 MS Awareness Week: March 14-20, 2011. . . . . . 4 Students Chalk It Up for MS Awareness. . . . . . . . . 4 Scholarship Applications Due by Jan. 14 . . . . . . . . 4

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Foot Drop Research Makes Big First Step

It’s Time to Get Social! . . . . . . . . . . . . . . . . . . . . . . . . 5 Kudos Krusaders! Community Support Drives Fundraising . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7 Meditation Improves Quality of Life in Persons with MS . . . . . . . . . . . . . . . . . . . . 12 As Seasons Change, So Does MRI-Detected MS Disease Activity. . . . . . . . . . . . 14 Moving Toward A World Free of MS

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Watch It Live: 2011 Annual Meeting Saturday, Jan. 29, 2011 • Tulsa, OK National MS Society: South Central Region Conference and Annual Meeting Watch the 2011 Conference and Annual Meeting live from the comfort of your own home on Saturday, Jan. 29. For the first time, the annual meeting will be webcast direct from Tulsa, our 2011 host city. Visit JointheMovementLoneStar.org for details or call 1-800-344-4867.

Students Chalk It Up for MS Awareness Students at Marshall Academy of Fine Arts in Houston created colorful designs this fall for the 2010 “Chalk the Walk for MS” competition. Thirty students participated to raise awareness of multiple sclerosis and the annual Houston-area Walk MS events. Team Breakfast Club earned the grand prize: a $100 gift card donated by Texas Art Supply. Winning team members were Allison Arellano, Ian Catano, Lorena Garcia, Adrian Perez and Jennifer Ramos.

MS Awareness Week March 14-20, 2011 MS awareness is important 365 days a year. For one week annually, however, we raise awareness to new heights to unite others in the MS movement. National MS Awareness Week is March 14 – 20, 2011. It’s a time when communities, activists and volunteers remind us of the challenges and impact of multiple sclerosis. To learn more about National MS Awareness Week, visit the Society’s website at nationalMSsociety.org or call 1-800-344-4867. 4

MSConnection • WINTER 2011

Scholarship Applications Due by Jan. 14 As mentioned in the previous edition of MSConnection, National MS Society scholarship applications are available online at nationalMSsociety.org/scholarship. Applications and supporting materials must be submitted by Jan. 14, 2011.


It’s Time to Get Social!

Mark your calendar for the 2011 MS Socials and join others living with MS to celebrate how you keep moving. All events will feature tasty treats, entertainment, children’s activities, prizes and more.

At publication time for this issue, MS Socials are scheduled for:

San Antonio

Saturday, Jan. 8, 2011 11 a.m. – 2 p.m. Morgan’s Wonderland

Houston

Sunday, Feb. 6, 2011 11 a.m. – 2 p.m. Marriott Westchase

Austin

Saturday, Feb. 19, 2011 11:30 a.m. – 2 p.m. Westin Austin at the Domain

To confirm event times, locations and details, call the Society at 1-800-344-4867. Moving Toward A World Free of MS

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Donor Bequests Leave Lasting Legacy by Kristen Stubbs

I

n 2010, the National MS Society: Lone Star was the recipient of a very generous estate bequest from Jack Enloe. Both Mr. Enloe and his mother had MS and, upon his death, he directed that proceeds from his estate should be donated to the National MS Society to help other people living with this disease. Estate planning is one of those things that all of us must do at some point in our lives. Many people, like Mr. Enloe, want to leave a legacy of some sort when they pass; leaving a charitable bequest in your will is one way to accomplish this goal. Another way to make a charitable gift is to set up a gift annuity. Gift annuities are investment vehicles that provide for a lifelong revenue stream for the donor. Upon the donor’s passing, the principal of the annuity would then go to the organization. Many people prefer to give in this way as a means of avoiding large estate taxes upon death. Bequests and gift annuities are not the only ways one can leave a legacy of giving. The best advice will come from a tax attorney or accountant, so, when

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MSConnection • WINTER 2011

considering leaving a gift to the National MS Society, make sure experts are consulted. We are extremely grateful to donors like Jack Enloe. His forethought and generosity will help move us toward a world free of MS.

Kristen Stubbs is Vice President of Strategic Philanthropy. For more information on ways to give or to inform the Society of provisions that you have made in your will regarding a gift, contact Kristen at 713-394-2991 or kristen.stubbs@nmss.org.


Kudos, Krusaders! Community Support Drives Fundraising by Trenton Foster

W

alk MS team Kristi’s Krusaders stepped up the pace this fall with a third-party fundraising event to support MS research. Led by Kristi Bode, the team captain for Kristi’s Krusaders, the fundraiser was held in Milano, Texas, west of Bryan-College Station. The event consisted of a five-stop motorcycle ride, horseshoe tournament, pool tourney and live auction. The all-day event this past August raised more than $15,100 for the Kristi’s Krusaders team, which led the fundraising roster for the Fall 2010 Walk MS: Harker Heights. If the event’s fundraising total was averaged with Milano’s population of 400 residents, it would be equal to each citizen raising more than $37 each. Bode highlighted the reason behind her commitment to the Harker Heights walk and

the MS movement with a personal message on her fundraising page: “I was diagnosed with MS about a year ago. For me, it has already been a very eye-opening and scary thing. My biggest concern, like most mommies, is for my beautiful children and their bright futures. I do not want them to ever have to worry about the effects of this very unpredictable disease. So, if having this disease was meant to help fund the research necessary to deter it for future generations, I will gladly accept that challenge.”

Trenton Foster is Development Manager in the Society’s Austin office. She can be reached at trenton.foster@nmss.org.

Moving Toward A World Free of MS

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C OVER S T OR Y

Camping It Up for a Good Cause Photos by Eddy Holden and Chase Shull

O

nce a year, the National Multiple Sclerosis Society hosts its weekend Family Discovery Camp for individuals living with MS and their immediate family members. More than 250 campers and volunteers attended the Fall 2010 Family Discovery Camp at Camp For All in Burton, Texas. Camp For All offers a barrier-free environment. Attendees can enjoy activities such as horseback riding, canoeing, fishing, archery, cooking classes and more. In addition to Family Discovery Camp, other Societyhosted events at Camp For All include Champ Camp for children living with multiple sclerosis and Camp Can Do for adults with MS. These annual camps help everyone affected by MS develop a better understanding of this unpredictable disease and connect with others.

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Society is in Good Company with Mission-Minded Corporate Partners by Calvin Pollard II 10

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T

he National Multiple Sclerosis Society provides a multitude of ways for companies to involve themselves with our events. In doing so, companies provide much more than donations to advance the movement to help everyone with MS. Through events such as Bike and Walk MS, companies become ambassadors to create public awareness regarding our mission, as well as act as conduits to raise vital funds to make the movement possible. Corporations dedicate themselves to become partners with our events to not only support event costs, but to also reflect their commitment and dedication to our communities. As the recent economic atmosphere has become difficult to navigate, corporate partners are making tough decisions to determine which non-profit organizations to support and how they will allocate those funds. In the past, sponsorship has moved from a logo soup of branding T-shirts, flyers and banners at events to maturing a corporate partnership that includes fundraising, sponsorship contribution and active volunteer engagement. For instance, global engineering, construction and services corporation KBR is a company that was introduced to the Society through the efforts of Pavan

Lakku, P.E., in Houston, one person who wanted to make a difference. Not only did he want to ride, but he also wanted to see how KBR could play a support role. KBR started as an entry-level sponsor of Texas’ annual BP MS 150, contributing volunteers to a breakpoint on the first day of Corporations the Houston-todedicate themselves Austin bike ride. Since then, KBR to become partners has developed with our events to walk and bike teams, continues not only support to sponsor the event costs, but to BP MS 150 breakpoint, has also reflect their become a top commitment and ride sponsor and is the Presenting dedication to our Sponsor for communities. the Houstonarea Walk MS series, which encompasses five fall walk events. These corporate partners are going above and beyond to build true relationships with the National MS Society, moving us all closer toward our shared goal of a world free of MS.

Calvin Pollard II manages corporate partnerships with the National MS Society. He is based in the Society’s Houston office. For more information on the benefits of becoming a corporate partner with the Society, contact Calvin at 713-394-2952 or calvin.pollard@nmss.org.

Moving Toward A World Free of MS

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RE S EAR C H

Meditation Improves Quality of Life in Persons with MS

T

he largest study of its kind has shown that mindfulness-based meditation significantly improved health-related quality of life, depression and fatigue in a study involving people with relapsing-remitting and secondary-progressive multiple sclerosis. Paul Grossman, Ph.D., and colleagues at University Hospital – Basel reported on this study in Neurology. This study provides evidence on the value of an alternative treatment for MS symptoms, highlighting the importance of quality of life to improve wellbeing. Depression and fatigue are common symptoms of MS. These and other psychosocial impacts of MS can adversely affect health-related quality of life or sense of well-being. Their intensity is often independent of the physical aspects of a person’s disease. For this study, investigators focused on whether a type of meditation known as mindfulness-based intervention (MBI) could improve well-being in people with MS. This form of meditation is mental training aimed at changing an individual’s perception, creating awareness and acceptance of moment-to-moment experiences, with the goal of reducing reactions that may worsen any pain or emotional distress that occurs from health-related changes.

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MSConnection • WINTER 2011

In this largest study of its kind in MS, 150 participants with relapsing-remitting or secondary-progressive MS were enrolled. Seventy-six were randomly assigned to receive weekly 2½-hour group training sessions in MBI for eight weeks, plus one all-day session and practice homework. A control group of 74 people received regular medical care. Health-related quality of life, depression and fatigue were assessed using questionnaires before the study, after the eight weeks of training and after another six months. Secondary outcomes included anxiety, personal goal attainment and adherence to homework. After eight weeks, participants improved significantly more in the MBI group than in the control group across all outcome measures, except for perceived limb mobility. The benefits remained significant at the six-month follow-up, but were less than at the eight-week endpoint. In a subgroup of people who scored worse on scales for depression, fatigue and anxiety before the study, this group showed an even greater degree of improvement. Propelling research to address quality of life issues in MS is a key part of the Society’s 2011-2015 Strategic Response initiatives.


RE S EAR C H

Stimulating Study is First Step in Device to Help Those with Foot Drop

R

esearchers reported that a functional electrical stimulation (FES) device significantly improved self-reported performance of daily activities and satisfaction scores in people with multiple sclerosis who experience foot drop. Julie Esnouf, Paul Taylor and colleagues with The National Clinical FES Centre in Salisbury, United Kingdom reported their findings using the Odstock Dropped Foot Stimulator. Foot drop is a condition caused by weakness or paralysis of the muscles involved in lifting the front part of the foot. It makes walking a challenge, causing a person to either drag the foot and toes, or to engage in a high-stepping walk. This condition is typically treated using exercises or an anklefoot brace. Anecdotal reports have suggested that some people with MS have found FES helpful in alleviating foot drop. FES uses low levels of electrical current to stimulate nerves, innervating extremities affected by impairment resulting from spinal cord injury, head injury, stroke or other neurological disorders, including MS. For this study, researchers enrolled 53 people with secondary-progressive MS and foot drop. Participants were randomly assigned to a group using the FES device

or a control group that received physical therapy exercises for 18 weeks. Some of the subjects in the exercise group were also using an ankle-foot brace. Performance of daily activities and satisfaction scores were significantly increased in the FES group over the control group. Participants in the FES group also reported significantly fewer falls and perceived the FES device to be significantly more effective in reducing tripping and increasing walking distance. In an earlier report of the same study, investigators also found that patients using the FES device could walk further in three minutes. These findings are an important first step in testing the use of this device to improve MS symptoms. The study’s authors noted that future studies will involve more detailed measures to record data on footsteps and falls.

Moving Toward A World Free of MS

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RE S EAR C H

As Seasons Change, So Does MRI-Detected MS Disease Activity

A

ccording to a recent study, disease activity measured by serial MRI scans in people with MS increased two- to three-fold during the months of March to August compared with other times of the year. Increases in disease activity correlated strongly with warmer temperature and increased solar radiation levels. The study by Dominik Meier, Ph.D., and colleagues at Brigham and Women’s Hospital in Boston highlights the influence of environmental factors on multiple sclerosis. It also suggests that seasonal variations should be accounted for in future clinical trials. One approach taken to find the cause and cure for MS is research into factors that influence whether a person develops the disease and whether it progresses. Research of populations to study disease patterns -- including variations in geography, demographics, socioeconomic status, genetics, environmental risk factors and exposure to infectious agents -- is called epidemiology. These studies provide vital information about relationships among these factors, enabling researchers to better understand who gets MS and why, identify and explain areas with high or low rates of the disease, and assist in planning for health care and other services. This study, while small, adds the precision of frequent magnetic resonance imaging scans to detect lesions, or spots of disease activity or damage, in the brain. The team analyzed MRI scans performed in 31 people with relapsing-remitting MS and 14

MSConnection • WINTER 2011

13 people with progressive MS in the Boston area during the course of one year. Scans were performed in the early 1990s before there were approved disease-modifying therapies, excluding the probable influence of such therapies on disease activity. Participants underwent weekly to monthly MRI scans, with a median of 22 scans per person. Clinical examinations were performed to record the occurrence of clinical relapses. Boston-area meteorological data – such as peak daily temperature, solar radiation and precipitation -- for the study’s time period were obtained from the U.S. Historical Climatology Network. New areas of disease activity on T2weighted MRI scans, used to provide information about disease burden, or the total amount of tissue damage, were two to three times higher in the months from March to August than the rest of the year. New T2 activity correlated strongly with temperature and solar radiation levels. Clinical relapses were not increased significantly during these months. New T2 disease activity peaked toward the spring months in subjects with progressive MS. In an editorial accompanying this study, Anne Cross, M.D., and Becky Jo Parks, M.D., with Washington University in St. Louis noted, “If critical environmental factors could be identified, this information would undoubtedly provide important clues regarding the mechanisms of disease progression in MS.”


MS doesn’t wait and neither should you. Visit us online at JointheMovementLoneStar.org and click the Advocacy link in the left-hand column. You’ll learn more about our advocacy efforts to help Americans living with MS and how you can make a difference, for example:

Join the Movement

and Get Involved • Become an MS Advocate: Join the MS Advocacy Action Network. Respond to occasional calls to action with e-mails, letters and phone calls to policymakers, and receive advocacy updates and e-newsletters on vital MS policy issues. • Become an MS Issue Ambassador: Make two in-person visits or more per year to legislators, in addition to Advocacy Action Network activities. • Contribute to the MS Story Bank: Share your personal story about challenges you have encountered; with your permission, stories will be used to raise greater awareness of MS policy issues. MS STOPS PEOPLE FROM MOVING

WE EXIST TO MAKE SURE IT DOESN’T.  Moving TowardJOIN A World Free of MS 15 THE MOVEMENT


8111 North Stadium Drive, Suite 100 Houston, Texas 77054

Go For A

STROLL

Registration is open for Spring 2011 Walk MS events throughout the Lone Star State. Visit walkMStexas.org to sign up for a walk near you.

walkMStexas.org

or

Get On A

ROLL

Saddle up for a Bike MS trek throughTexas this spring. Find out how to participate, volunteer or donate by visiting bikeMStexas.org.

bikeMStexas.org


Winter 2011 MSConnection Lone Star