ARKANSAS
M OV I N G TO WA R D A W O R L D F R E E O F M S
WINTER 2013
Antonio Sabato Jr. Adds Muscle to MS Movement Actor and model Antonio Sabato Jr. helped pump up MS awareness during a recent visit to Tulsa, Okla.
iNutrition. Because he has a friend with MS, Antonio expressed an interest in getting involved with the National MS Society’s mission.
An avid fitness enthusiast, the star of TV shows such as “General Hospital” and “The Bold and the Beautiful” came to Tulsa in October to open his first weight loss center and fitness gym called
To show his support, he and Brandi Moore, the Society’s South Central Regional Communications and PR Manager, appeared on Tulsa’s Channel 8 “Good Day Tulsa” Continued page 3
Antonio with Mason and Aimie
Trifest Event in Bentonville PAGE 5
Bikes, Blues & BBQ PAGE 5
2013 Arkansas Public Policy Conf. PAGE 6
$70,000 raised by Bike MS Arkansas PAGE 9
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 of Development • Ray Mack
Development Manager • Lisa Finkbeiner Programs & Services Manager • Brooke Smith Strategic Philanthropy Coordinator: • Tina Ward 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
Vice President’s Impressions Dear Members, Welcome to a new and fantastic year. Walk MS Arkansas events are almost upon us. Please join us this spring at any of the following Walk MS events: Hot Springs, Jonesboro, Little Rock, Northwest Arkansas and Texarkana. So lace up your shoes, register and recruit for your Walk MS team, and we will see you at your local walk. Also, don’t forget to join us for the 2013 Bike MS: Rock’n Hot Ride on September 7 & 8! All of these events help with the National MS Society’s NOW Campaign, No Opportunity Wasted. By 2016 the Society plans on investing over $50 million annually to MS specific research. The NOW Campaign will focus on the three areas of our comprehensive research strategy – to stop MS in its tracks, restore what’s been lost and end the disease forever. Sincerely,
Ray Mack
Offices Closed for Upcoming Holidays National MS Society offices will be closed on the following days: • Christmas: Friday, Dec. 21 (half-day closure); Monday, Dec. 24; and Tuesday, Dec. 25 • New Year: Monday, Dec. 31; Tuesday, Jan. 1
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news
program. Antonio and Brandi discussed multiple Later, Antonio met with Aimie Dwyer and Mason sclerosis, the Society and the benefits of a healthy Hoffman, two young Oklahomans who shared lifestyle in managing MS symptoms. their experiences about living with the daily challenges of multiple sclerosis.
Brandi Moore & Antonio on “Good Day Tulsa�
Mason & Antonio discussed the importance of exercise in countering the effects of multiple sclerosis.
Photos by Brandi Moore
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Programs
Meet Our Volunteer Hall of Fame Inductees
Each year, local volunteers are nominated to receive national recognition for their outstanding service to the National MS Society. Congratulations to the following South Central volunteers inducted into the Society’s Volunteer Hall of Fame for 2012. Advocacy Champion: Patti Barker Since daughter Channing’s MS diagnosis at the age of 16 in 2006, Patti has been a driving force of the Society’s South Central MS movement. Patti chairs the Oklahoma Government Relations Committee; she also serves on the Oklahoma Leadership Council and the South Central Board of Trustees. As she has told legislators, “With your support, one day MS will equal ‘Mystery Solved.’ ”
Health Professionals Champion: Dr. Amy Gutierrez Dr. Amy Gutierrez became involved with the Society nine years ago and remains actively engaged in numerous areas of the MS mission. She has served on the South Central Board of Trustees and Leadership Council since 2008, and the Clinical Advisory Committee since 2004. She speaks at numerous programs – such as Annual Meetings, North American Education Programs and Golden Circle Events – and supports the Society’s advocacy efforts. Additionally, Dr. Gutierrez rides in the annual Bike MS: Louisiana and participates in Walk MS: New Orleans.
Programs and Services Champion: Jinjer LeVan In 2009, Jinjer LeVan was awarded the Funding the Mission Champion: Gerald Merfish Kanaly Trust Foundation MS EntrepreGerald Merfish, owner of Merfish Pipe & neur Grant to develop an MS Symptom Supply, has been active with the Society Experience Kit, helping educate the public since 2000 and is the fifth highestabout living with multiple sclerosis. She is cumulative fundraiser for South Central an MS Ambassador, guest speaker at Self-Help Bike MS events. For nine years, he has Groups, state advocate, MS Awareness Week Public been a member of the Board of Trustees, where he Speaker, and a Walk MS Team Captain and has served as Board Secretary and Chairman of the committee member. Jinjer is one of approximately Finance Committee. He is credited with forming a 10 people in the United States with both MS and budget panel to review allocation of funds for Leiber’s Hereditary Optic Neuropathy. programs and services.
Deadline is Jan. 15 for Scholarship Applications The National MS Society offers a scholarship program for students with multiple sclerosis or who have a parent with MS. Applicants must plan 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. Awards range 4 I JOIN THE MOVEMENT: nationalMSsociety.org
from $1,000 to $3,000 for one year. A small number of four-year awards are also offered. Scholarship applications for 2013 are available on the Society’s website. There is no application fee for Society scholarships. Completed applications and supporting materials must be submitted by Jan. 15, 2013. For guidelines and applications, visit www. nationalMSsociety.org/scholarship or call the Society at 1-800-344-4867 (press 1).
Trifest Event in Bentonville
programs
Despite Hurricane Isaac, over 420 racers came out to compete at the inaugural TRIFEST for MS event held over labor day weekend in Bentonville, Ark. $30,000 was raised for the UAMS MS Research Department. This third party event is produced by the Rampy MS Research Foundation. Dates for the 2013 event have already been set. To learn more, visit researchms.org.
Bikes, Blues & BBQ National MS Society volunteers were out in droves September 26-29 bringing awareness about MS to Fayetteville’s Bikes, Blues & BBQ event. Attendance for the massive motorcycle rally was said to be 400,000 in foot traffic with all 50 states represented. Trained volunteers were able to meet many motorcyclists who either had MS or had a loved one with MS.
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Programs
Mattress Firm Helps Provide Good Night’s Rest for Person in Need
By Stacy Smith Society employees recently teamed up with a generous company to make one woman’s house a real home. After spending days in an unfamiliar hospital, most people look forward to the basic things that make their home a welcoming place: their couch where they can sit and rest, their favorite meal to cook, or their own comfortable bed. For one South Central resident with MS, continuing her recuperation at home on her worn 15-year-old mattress was far from a comfortable prospect. Within the last few months, she experienced a
relapse that worsened her MS symptoms and placed her in the hospital. After being released, the woman went home for much-needed rest, though she was unable to replace her uncomfortable, disintegrating mattress due to tight finances. After Society staff members told the woman’s story to Mattress Firm representatives, the company agreed to help by donating a new bed equipped with rails, along with a new bed for her daughter. Through dedication and teamwork, Mattress Firm and Society employees ensured one family would have a good night’s rest.
Stacy Smith is the volunteer coordinator in the Society’s Tulsa, Okla. office.
2013 Arkansas Public Policy Conference – Make a Connection. Make a Difference. Join Arkansans Impacted by MS! You are invited to make a difference in the lives of people living with multiple sclerosis by sharing your story with your Arkansas legislators at the 2013 Public Policy Conference on Thursday, Jan. 31, 2013. The Conference is a one-day event at the Capitol in Little Rock and is a great way to educate lawmakers about the importance of supporting legislation that can make a difference in the lives of Arkansans impacted by MS. Never been to the Capitol? Don’t know your elected officials? Don’t worry – experienced MS Activists and National MS Society staff will be your partners every step of the way!
opens for this important event. For additional information, please contact Mireya Zapata at (512) 340-2703 or mireya.zapata@nmss.org.
Sign up for the MS Action Network on our One voice connecting with one representative website today, www.nationalMSsociety.org/ can make a huge difference for thousands of advocacy, and we will email you when registration Arkansans living with chronic illness. 6 I JOIN THE MOVEMENT: nationalMSsociety.org
Senator Shane Broadway Appointed to Society’s Federal Activism Committee
programs
By Jessica Pingry
approximately $170 million annually from state revenues and lottery funds intended to ease the We are excited to announce that Arkansas’ own financial burden of students seeking an education Shane Broadway was nominated for and beyond high school. An Arkansas State University appointed to the National MS Society’s Federal alumnus, Broadway served three terms as a Activism Council (FAC). The FAC helps ensure representative for Pulaski and Saline Counties, and that federal policy and advocacy priorities within two terms in the senate. He was elected speaker of the National MS Society are discussed and the house by his colleagues in 2001. While serving analyzed in a broad manner. The group’s goal is in the General Assembly, Broadway was at the to bring together expertise among Society staff forefront of the legislature’s push to continue and volunteers throughout the organization to improving Arkansas’s educational system, serving assess federal public policy priorities. on the education committee every term except when he was Speaker of the House. Creating Senator Shane Broadway is the interim director for economic development opportunities to bring the Department of Higher Education and has been jobs to the state has been another focus of Sen. with the agency since January 2011. Broadway is a Broadway’s efforts, both as a legislator and as a member of Governor Mike Beebe’s full cabinet as private consultant. He previously served as well as the Governor’s Workforce Cabinet, an chairman of the 15-state Southern Legislative appointed group of state government leaders Conference (SLC) – which fosters intergoverncharged with creating 21st Century jobs and skilled mental cooperation among member states – and workers. Broadway’s primary responsibility is as chairman of the SLC’s Education Committee. oversight of staff whose jobs are to carry out the Beebe appointed Broadway to the advisory board policy directives of the Arkansas Higher Education of the Southern Regional Education Board (SREB) Coordinating Board (AHECB) and to develop in 2007. funding recommendations for the state’s 11 public universities and 22 public two-year colleges as well Congratulations, Senator Broadway! Thank you as several other post-secondary entities. In addition, for commitment to the National MS Society and the agency is responsible for distributing our vision of a world free of MS!
Save the Date for a 2013 WALK MS Event Nearest You Registration is open!
Walk MS Texarkana – April 6 Walk MS Little Rock – April 13 Walk MS Northwest Arkansas – April 20 Walk MS Jonesboro – April 27 Walk MS Hot Springs – May 4 Visit www.walkmsarkansas.org for the latest information. TOLL FREE NUMBER 1 800 344 4867
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team talk
$70,000 raised for people affected by MS through Bike MS Arkansas Bike MS Rock’n Hot Ride 2012 was just that: Rock’n Hot! Approximately 100 cyclists participated in the event over the weekend of September 8 & 9. “Volunteers and staff could not have scripted a better weekend,” said Lisa Finkbeiner, Bike MS event manager. “The weather was beautiful, the trip from the Clinton Library in Little Rock to the historical splendor of Hot Springs was amazing, our dedicated cyclists were phenomenal and our champions with MS were inspiring.” The Rock’n Hot Ride raised over $107,000 to help create a world free of MS. “Our Bike MS Committee has already begun planning and strategizing for 2013! I am excited to see how this year unfolds,” said Finkbeiner. Bike MS Rock’n Hot 2013 is scheduled for September 7 & 8. For more information, please contact Lisa.Finkbeiner@nmss.org or visit the Bike MS website at www.bikemsarkansas.org.
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Team Talk
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research
Research Round-Up
FDA Approves Second Oral Drug for MS In September, the U.S. Food and Drug Administration approved teriflunomide oncedaily pills to treat relapsing forms of MS. This is the second oral disease-modifying therapy approved for the treatment of multiple sclerosis. “We are greatly encouraged to see a new oral therapeutic option become available to people living with MS,” said Bruce A. Cohen, M.D., Professor, Davee Department of Neurology and Clinical Neurosciences at Northwestern University’s Feinberg School of Medicine, and incoming Chair of the National MS Society’s National Medical Advisory Committee. “As with any new therapy, the long-term safety of Aubagio will need to be carefully monitored.” Dr. Timothy Coetzee, Chief Research Officer at the Society said, “With the collaborative research underway around the world today, this is an extremely hopeful time for anyone who is diagnosed with MS.” Weight Training Improves Walking and Quality of Life for Women with MS Women participating in a small study of progressive resistance weight training improved significantly in walking, and reported improvements in quality of life as well. The study, funded by the National MS Society, used standard measures to evaluate the effects of the program, along with in-depth interviews of the participants to determine the full effects on quality of life. During the training period, participants performed three supervised exercise sessions per week in a university-based fitness center using conventional weight-lifting machines. Trainers had previous experience working with people with MS. Training protocols were individualized to meet individuals’ differences in fitness and to accommodate day-to-day variability in fatigue. 10 I JOIN THE MOVEMENT: nationalMSsociety.org
Walking performance improved by more than 13 percent. All participants reported enhanced muscle endurance or delayed muscle fatigue, as well as strength. These experiences impacted performance of a variety of daily life tasks. “I have not used any of those electrical carts in any of the big stores in a long time now,” said one participant. Another noted, “Since I’ve been doing this, I’ve been having stuff [to do] every single day of the week. In the past, I would do something one day and then rest the next day.” Six participants reported improved physical capabilities that impacted daily tasks such as yard work, shopping and chores around the house. Seven perceived a social impact, including making new friends, camaraderie with the other participants and research staff, being less of a burden on caregivers, and the development of a support network. Six claimed they had positive emotional responses due to the exercise program that included pride of accomplishment and a better mood. “I smile a lot more and that’s good,” noted one woman. Testosterone Prevents Nerve Impairments in MS Study Researchers funded by the National MS Society have shown that the male sex hormone testosterone prevented or restored impairments in nerve impulse transmission in mice with EAE, an MS-like disease. The improvements specifically occurred in an area of the brain associated with cognitive function, lending evidence to the potential for the future use of sex hormones to treat this MS symptom. This team is currently conducting clinical trials to determine whether estriol (another sex hormone, added on to standard therapies) improves disease activity and cognition in women with MS.
research
Genes May Help Categorize Disease Course and Response to Therapy A team led by Philip L. De Jager, M.D., a Harry Weaver Scholar of the National MS Society from Harvard’s Brigham and Women’s Hospital in Boston, has discovered that differences in active genes – detectable in blood samples – have the potential to be used to group people with MS into categories that predict disease course and response to therapy. Further research is needed to refine this approach before it becomes a tool that can benefit treatment decisions made by people with MS and their health care providers.
generosity of the Charles and Margery Barancik SO Foundation, and is administered through the National Multiple Sclerosis Society.
New Innovation Prize Created to Spur Research Progress A new $100,000 annual cash prize has been established to recognize scientists whose inventive work is propelling measurable MS research progress. The Barancik Prize for Innovation in MS Research recognizes an exceptional scientist or team whose work in MS research has demonstrated outstanding innovation and originality. The prize is made possible by the
The first prize will be given in May 2013. Nominations are accepted until Jan. 31, 2012. A selection committee comprised of leaders in science, medicine and MS advocacy will review nominees for their exceptional innovation and originality, impact and potential of the research to lead to pathways for the treatment and cure for MS, and accomplishments that merit recognition as a future leader in MS research.
“We are proud to steward the new Barancik Prize, the largest ever established to spur progress toward stopping MS, restoring function and ending MS forever,” said Cyndi Zagieboylo, President and CEO of the National MS Society. “This is the latest in a long history of generous support for MS research provided by Charles and Margery Barancik, and it reflects their wish to speed this vital work.”
Self-Help Groups & Leaders Batesville Area Looking for a co-leader!! Jamie 870-834-3604
Greater Little Rock Area Stuart 501-835-6776 Merten 501-223-8427
Rogers Area Susie 479-633-6694 Sandra 479-685-4383
Conway Area Leah Mohlke 501-450-0489
Northeast Arkansas Susan 870-239-2561
Springdale Area Jan & Hilde 479-445-6776
Hot Springs Area Charles & Theresa 501-624-6033
Pine Bluff Area MyKenya 870-592-0055
Van Buren Area Byna 479-650-6415 Doug 479-462-9024
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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
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Save the Date • January 31 – Arkansas Public Policy Conference • MS Awareness Week – March 11-17
6/29/12 9:38 AM
Walk MS 2013 Dates: • Texarkana – April 6 • Little Rock – April 13 • NW Arkansas – April 20 • Jonesboro – April 27 • Hot Springs – May 4