Summer 2011 MSConnection: Lone Star

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Moving Toward A World Free of MS Summer 2011

Setting Our Sights on Research • Funding for New Projects

• Stress and MS • New Drug Study • and More

Free Summer Teleconferences Society Partners Up to Go Green


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

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

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

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.

This Summer, Volunteer to Make a Difference in Someone’s Life Volunteering is always in season with the National Multiple Sclerosis Society. Volunteer opportunities are available for a wide range of talents and skills. Recent volunteer postings – for both one-time and ongoing opportunities – have included photographers for Walk MS and Bike MS events, MS Ambassadors, activists working in their local communities to raise awareness, volunteer recruiters, secretaries, cheerleaders at fundraising events, writers, PR assistants and warehouse workers, to name only a few. Volunteering with the Society is a great summer activity for individuals and families, as well as groups from schools, churches and companies. In fact, many corporations volunteer with the Society as a way to build teams. We welcome you and your time, talents and dedication in helping others living with multiple sclerosis. For information on volunteer opportunities near you, visit www. volunteerMS.org or contact the National MS Society directly at 1-800-344-4867.


Connect with Self-Help Groups Near You The National MS Society’s Self-Help Groups offer opportunities for people living with multiple sclerosis, their families and friends to meet others affected by MS. Group meetings provide settings to share common experiences and concerns, network with others, give and receive emotional support, and receive MS-related information from peers and guest professional speakers. Self-Help Groups are facilitated by trained Society volunteers. To find a Self-Help Group near you, visit www.JointheMovementLoneStar. org, click the Programs and Services link in the upper left-hand column, then click the link for Self-Help Groups. You can also call the National MS Society directly at 1-800-344-4867.

Dallas Cyclist Rides in Honor of Troops Serving Overseas In honor of U.S. military personnel, 2011 Bike MS: Sam’s Club participant Matt Jasper of Dallas proudly sported an Army jersey signed by members of the Kansas Army National Guard’s 778th Transportation Company. With the help of Sgt. Annette Ross, Jasper sent the cycling jersey overseas to be autographed by the 778th Transportation Company, currently stationed in Kuwait. Jasper and his North Texas team raised more than $75,000 in the Frisco-to-Fort Worth fundraising ride this spring to benefit the National MS Society and its mission to help everyone affected by multiple sclerosis.

Pictured above: TMCO President Ariela Alpert, Ride Director Mark LeBlanc, Event General Director Phil Pauzé, Teams Director Eric Powell and Regional Executive Vice President Mark Neagli with the National MS Society.

Gran Fondo: Texas TMCO Supports MS Mission During a May performance of the Texas Medical Center Orchestra at Houston’s Wortham Center, officials with the Gran Fondo: Texas TMCO presented checks to the National Multiple Sclerosis Society and the Texas Medical Center Orchestra. The 2011 Gran Fondo: Texas TMCO was a fun-filled weekend event in April that included a bike ride, Cannondale bike raffle, auction and concert featuring Grammy Award and Academy Award winner Christopher Cross. These events raised $55,000 for the beneficiaries.

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Sponsors’

BIG

GREEN INITI TIVE by Calvin Pollard II

is in the Bag

Hess Corporation and Republic Services Launch Recycling at Cycling Event It is the National MS Society’s hope that local communities will get involved in MS events for the purpose of raising awareness and vital funds for research and programs. Cyclists, walkers and volunteers engage friends, family and co-workers to raise money for MS-related services; however, their initial interests in the Society may not always begin with a focus on the MS mission. 4

MSConnection • SUMMER 2011


Traditionally, a reason for event participation occurs due to the physical challenge or embracing a healthy lifestyle for cyclists and walkers. While engaged, they soon see the association with the mission and then become passionate about being part of the MS movement. This passion and dedication extends beyond event participants. Hess Corporation and Republic Services, corporate partners of the annual Houstonto-Austin BP MS 150 cycling event, realized the need to become more connected to the MS movement, thus partnering together on the Green Initiative Recycling Program. The Green Initiative is a response to reduce effects on the environment during events and to garner volunteer engagement toward achieving this goal. Hess Corporation and Republic Services provide funds, support materials and company volunteers to gather discarded cardboard, paper, plastic bottles and aluminum. With 13,000 registered participants, the BP MS 150 – the Society’s largest single fundraising event in North America – produces nearly 55 tons of discarded materials during the two-day event. Thanks to the development of the Green Initiative campaign prior to the event and work diligently done during event weekend, nearly 48 percent of this amount was collected for recycling, totaling 26 tons of recyclable material. Corporate support -- along with efforts of more than 100 environmentally passionate volunteers -- for the Green Initiative have helped the BP MS 150 become environmentally responsible and provided an outlet that will associate them with the Society. It is a hope that this will promote future efforts to make a direct impact on the mission – and environment – to create a world free of MS.

Calvin Pollard II manages corporate partnerships with the National MS Society. Based in the Society’s Houston office, he can be reached at calvin.pollard@nmss.org.

Make the Call to Live Better with Society’s Free Teleconference Series Learn about topics that affect your life from the comfort of your home with the National MS Society’s ongoing teleconference series. Each month’s teleconference is free and begins at 7 p.m. Central on the second Wednesday of each month. To register for a teleconference, call 1-800-344-4867 (press 1 when asked). Upcoming teleconferences for July through September 2011 are: Research and What It Means for You July 13, 2011 • In July, we’re heating things up as we find out what’s hot in MS research. Call in to learn about exciting new frontiers in MS research and what this could mean for you and your loved ones. Caregiver Burnout Aug. 10, 2011 • Caring for someone with a chronic illness can be deeply satisfying, but also physically and emotionally exhausting. August’s teleconference will focus on preventing caregiver burnout. Participants will explore caregiving truths and misconceptions, plus the importance of coping skills and support systems. Website 101 Sept. 14, 2011 • This hands-on seminar will guide you through the National MS Society’s website. Learn to easily navigate this powerful online tool to stay on top of the latest multiple sclerosis news, research, programs and events.

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RE S EAR C H

Research Round-Up Society Funds $17.5 Million in New Research Projects This spring, the National MS Society announced its commitment of $17.5 million to support 50 new MS research projects as part of its comprehensive strategy to stop multiple sclerosis, restore function that has been lost and end the disease forever. This financial commitment is part of the Society’s nearly $40 million 2011 investment in cutting-edge research projects. The new projects support the comprehensive research goals outlined in the Society’s five-year Strategic Response, including an increased focus on understanding and stopping disease progression, supporting development of new therapies, identifying rehabilitation and other strategies to restore function, and getting more researchers and scientists focusing on MS. The projects include clinical trials testing whether vitamin D can stop MS activity; a clinical trial to evaluate whether a repurposed drug, phenytoin, can protect the nervous system from MS damage; investigations of mechanisms that may lead the immune system to turn against the nervous system;

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MSConnection • SUMMER 2011

studies of natural molecules that may stimulate repair of the nervous system to restore function; studies exploring novel exercise programs to combat MS symptoms; and a study comparing the activity of several viruses, including Epstein-Barr virus, that may be involved in triggering immune attacks in people with MS, which may lead to clues to ending MS through prevention. Research Progress Takes Center Stage at Annual Neurology Meeting This spring, more than 10,000 researchers and practicing neurologists from around the world gathered at the 63rd Annual Meeting of the American Academy of Neurology (AAN) in Honolulu. More than 500 presentations related to multiple sclerosis were given, including a presentation by the 2011 John Dystel Prize for MS Research recipient, Dr. Brian Weinshenker with the Mayo Clinic, related to his work and contributions toward understanding MS and the related disorder neuromyelitis optica; National MS Society grantees, and grantees from the MS Society


of Canada, NIH and other agencies. Topics included a new trial in primary-progressive MS, advantages of early treatment and its long-term impact, treating sleep disorders, quality of life, MS genetics, the role of immune B cells, myelin repair, environmental risk factors and many more. A full summary of the AAN presentations can be found on the Research section of the Society’s website at www.nationalMSsociety.org. Study Finds No Link between Stress and Development of MS A new study found that stress does not appear to increase a person’s risk of developing multiple sclerosis. The study focused on two large groups of women in the Nurses’ Health Study, involving nearly 240,000 female nurses followed over time in the United States. The nurses were asked to report on general stress at home and at work, as well as recall physical and sexual abuse in childhood and as teenagers. The investigators, led by Trond Riise, Ph.D., with the University of Bergen in Norway, found that those who later developed MS did not respond significantly differently than those who did not develop MS in terms of their histories of general levels of stress or physical or sexual abuse. The study’s authors concluded that their results do not support a major role of stress in the development of MS, but that more research is needed to definitely exclude stress as a potential risk factor for developing MS. Research Shows Low Vitamin D Levels in African-Americans with MS According to a new study, African-Americans with MS have significantly lower levels of vitamin D than African-Americans who do not have MS, but these levels are not linked to disease severity. Researchers concluded that larger studies of diverse populations are necessary to fully understand the relationship of MS and vitamin D. The study was conducted by Jeffrey Gelfand, M.D., Ari Green, M.D., and colleagues at the University of California in San Francisco with

funding provided by a National MS Society/American Academy of Neurologist Clinician Scientist Award to Dr. Green, as well as a research grant funding genetic studies in ethnically distinct populations to Jorge Oksenberg, Ph.D. African-Americans are at increased risk for having low vitamin D levels, possibly because melanin, which determines the level of pigment in the skin, acts as a filter of ultraviolet light, limiting the amount of vitamin D that can be produced by the body in response to sunlight. This study team previously reported that African-Americans tended to have a more aggressive course of disease than Caucasian Americans, were at higher risk for developing mobility impairments, were more likely to develop MS later in life, and were at higher risk for having symptoms restricted to the optic nerve and spinal cord. Research is increasingly pointing to a reduced level of vitamin D in the blood as a risk factor for developing MS. The National MS Society is funding several projects in this area, including a new clinical trial getting underway to test whether vitamin D can reduce disease activity in people who have multiple sclerosis. Positive Results Announced from Phase 3 Study of Oral BG-12 Biogen Idec announced that the experimental oral therapy BG-12 significantly reduced the proportion of people with MS who experienced relapses in a twoyear study of more than 1,200 people with relapsingremitting MS. Although its exact mode of action is not known, BG-12 is thought to inhibit immune cells and molecules involved in MS attacks on the brain and spinal cord. The results were announced in April. Data analysis is ongoing and the company expects to provide a full report at an upcoming medical meeting. Another trial of BG-12 is currently underway.

These and many other ongoing efforts by researchers around the world reflect the rapid pace of MS research. For more information on these and other research initiatives, visit the National MS Society online at www.nationalMSsociety.org.

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National Multiple Sclerosis Society Lone Star Chapter 8111 North Stadium Drive, Suite 100 Houston, Texas 77054

Go For A

STROLL

Registration is open for 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. Find out how to participate, volunteer or donate by visiting bikeMStexas.org.

bikeMStexas.org


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