New Mexico: Winter 2013 MSConnection
Winter 2013 issue of MSConnection, a quarterly newsletter from the National MS Society for those in New Mexico living with multiple sclerosis
NEW MEXICO M O V I N G TO WA R D A W O R L D F R E E O F M S • WINTER 2013 Meet Our South Central 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.’ ” Funding the Mission Champion: Gerald Merfish Gerald Merfish, owner of Merfish Pipe & Supply, has been active with the Society since 2000 and is the fifth highestcumulative fundraiser for South Central Bike MS events. For nine years, he has been a member of the Board of Trustees, where he has served as Board Secretary and Chairman of the Finance Committee. He is credited with forming a budget panel to review allocation of funds for programs and services. 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 Kanaly Trust Foundation MS Entrepreneur Grant to develop an MS Symptom Experience Kit, helping educate the public about living with multiple sclerosis. She is an MS Ambassador, guest speaker at SelfHelp Groups, state advocate, MS Awareness Week Public Speaker, and a Walk MS Team Captain and committee member. Jinjer is one of approximately 10 people in the United States with both MS and Leiber’s Hereditary Optic Neuropathy. INSIDE THIS ISSUE Mattress Firm PAGE 3 Antonio Sabato Jr. PAGE 4 Research Round-Up PAGE 6 NATIONAL MS SOCIETY Albuquerque Trade Center 3540 Pan American Fwy NE, Suite F Albuquerque, NM 87107 tel +1 800 344 4867 tel +1 505 243 2792 fax +1 505 244 0629 www.MSNewMexico.org STAFF & LEADERSHIP Mark Neagli Maggie Schold Vicki Kowal 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 applicantâ€™s essay on the impact of MS on his or her life. Awards range 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 Societyâ€™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). Regional Executive Vice President Sr. Management, Development Coordinator, Programs & Services David Peters James Black Editor Chair, Leadership Council 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. Your bright idea can change the future for people living with MS. Re-introducing MS Entrepreneurs - a grant program that provides individuals with funding to create solutions for the challenges faced by people living with MS. Submit your idea for consideration by 10.15.12 or 4.15.13. Visit MSentrepreneurs.org to learn how. SIGN UP FOR OUR MONTHLY MS eNEWS Get the latest news on research in your inbox. Go to nationalMSsociety.org/signup. 2 | JOIN THE MOVEMENT: nationalMSsociety.org LIVING WITH MS 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 a volunteer with the Society’s Tulsa, Okla. office. New Mexico Self-Help Groups The National MS Society offers a variety of Self-Help Groups across the state. For a complete list, visit MSNewMexico.org or call 1-800-344-4867. Farmington Lean on Me Support Group Meets at 1 p.m. on the 2nd Tuesday monthly San Juan Regional Offices 2325 East 30th St. in Farmington Contact Donna: 505-334-3316 or 505-320-0784 Contact Debbie: 505-326-0657 or 505-320-8095 Rio Rancho Westside Self-Help Group Self-Help Group for people with MS and their families Meets 11 a.m. – 1 p.m. on the 3rd Thursday monthly Rio Rancho Church of Christ 1006 22nd St. SE Rio Rancho, NM 87124 Contact Tina: 505-896-6728 Roswell Roswell Self-Help Group Meets 4:30 – 6 p.m. on the 4th Tuesday of every month Roswell Adult Center 807 North Missouri Contacts: Shellie Hinkle at 575-910-4528 or Panda Moffitt at 575-624-0573 TOLL FREE NUMBER 1 800 344 4867 | 3 LIVING WITH MS 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. 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 iNutrition. Because he has a friend with MS, Antonio expressed an interest in getting involved with the National MS Society’s mission. 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” program. Antonio and Brandi discussed multiple sclerosis, the Society and the benefits of a healthy lifestyle in managing MS symptoms. Later, Antonio met with Aimie Dwyer and Mason Hoffman, two young Oklahomans who shared their experiences about living with the daily challenges of multiple sclerosis. 4 | JOIN THE MOVEMENT: nationalMSsociety.org 2013 NEW MEXICO PUBLIC POLICY CONFERENCE National Multiple Sclerosis Society January 30, 2013 Santa Fe, NM Make a Connection. Make a Difference. Join New Mexicans 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 state legislators at the 2013 New Mexico Public Policy Conference. This one-day event held at the Capitol is a great way to educate lawmakers about the importance of supporting legislation that can make a difference in the lives of New Mexicans affected 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! Registration is now open! Visit www.NationalMSSociety.org/nmx to learn more, or contact Vicki Kowal at 505-243-2792 (opt 2, ext 33302) or firstname.lastname@example.org One voice connecting with one legislator can make a huge difference for thousands of individuals living with chronic illness. TOLL FREE NUMBER 1 800 344 4867 | 5 RESEARCH RESEARCH ROUND-UP FDA Approves Second Oral Drug for MS In September, the U.S. Food and Drug Administration approved teriflunomide once-daily 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. 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. 6 | JOIN THE MOVEMENT: nationalMSsociety.org RESEARCH 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. 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. through the National Multiple Sclerosis Society. “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.” 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. 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 generosity of the Charles and Margery Barancik SO Foundation, and is administered 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 TOLL FREE NUMBER 1 800 344 4867 | 7 MS = Join the Movement速 Create a World Free of Multiple Sclerosis.