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Society Awards 2012 Scholarships to LOCAL College-Bound Students by Kelly Jo Tullburg and James Black Two New Mexico scholars are getting a Society boost to the next level of their academic endeavors. In 2012, the National MS Society: South Central – which includes New Mexico, Oklahoma, Texas, Arkansas and Louisiana – was able to offer 48 scholarships to high school seniors. These Society-funded scholarships not only ease the financial burden of college for families impacted by multiple sclerosis, but they also invest in the future of talented, dedicated students. Congratulations to our 2012 recipients from New Mexico: Mary Martinez High Rolls Mountain Park, New Mexico A graduate of Cloudcroft High School, Mary plans to attend the University of New Mexico
in Albuquerque. In high school, she participated in student council, National Honor Society, Science Olympiad, Knowledge Bowl, band and volleyball. She plans to major in Physical Education and pursue a career as a university-level manager or assistant coach. Alyxandra Ortiz Rio Rancho, New Mexico During her years at V. Sue Cleveland High School, Alyxandra participated on the varsity soccer and basketball teams. She will attend Eastern New Mexico University in Portales and take part in its communications program, with her sights set on becoming a sports broadcaster. She plans to become an advocate for athletes and sports fans alike who are faced with the daily challenges presented by multiple sclerosis.
INSIDE THIS ISSUE
My Scholarship Story PAGE 4
Stuff Our Stockings PAGE 7
Research Round-Up PAGE 6
As this year’s scholarship recipients demonstrate, multiple sclerosis shouldn’t stand in the way of an education. The National MS Society’s scholarship program exists to help highly-qualified students who have been diagnosed with MS or who have a parent with MS achieve their dreams of going to college. The number of scholarships given each year is based on available funding. If you would like to learn more about how you can support students impacted by MS and help their dreams of college become a reality, contact Taylor Mallia with the Society’s South Central Strategic Philanthropy at taylor.mallia@nmss.org.
South Central Marketing Manager Kelly Jo Tullberg can be reached via email at kelly.tullberg@nmss.org. MSConnection Editor James Black can be reached at james.black@nmss.org.
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
Regional Executive Vice President
Offices Closed for Upcoming Holidays National MS Society offices will be closed on the following days: • Labor Day Friday, Aug. 31 (half-day closure); and Monday, Sept. 3 • Thanksgiving Wednesday, Nov. 21 (half-day closure); Thursday, Nov. 22; and Friday, Nov. 23 • Christmas Friday, Dec. 21 (half-day closure); Monday, Dec. 24; and Tuesday, Dec. 25
Maggie Schold
Sr. Management, Development
Vicki Kowal
Coordinator, Programs & Services
David Peters
Chair, Leadership Council
James Black Editor
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. 2 | JOIN THE MOVEMENT:
Nominees for Board of Trustees Now Being Accepted Individuals interested in being considered for nomination to the Board of Trustees should submit a letter of interest and a biography, along with full name, mailing address, email address and phone number. Nominees will be notified of board member expectations, responsibilities, and 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, 2012 to:
Mark Neagli ~ National MS Society 8111 N. Stadium Drive, Ste. 100 Houston, TX 77054
SIGN UP FOR OUR MONTHLY MS eNEWS Get the latest news on research in your inbox. Go to nationalMSsociety.org/signup.
LIVING WITH MS
On the Road Again, Thanks to Your Support Dear National MS Society and all of those who support the Society, I want to send a heart-felt thank you for the financial assistance you provided me last year. Because of your generosity, I was able to install hand controls in my vehicle. Your assistance has greatly improved my life! Due to MS, I had not been able to drive since December 2009. I live alone, and felt very isolated and dependent upon others to provide the things I need and, of course, for transportation. Unable to work and having limited resources, the prospect of being able to install hand controls and become more independent seemed unlikely. When I learned of possible assistance through the National MS Society, I regained hope and made a phone call.
Everyone was so nice, and the process went so smoothly, quickly and efficiently. I would especially like to thank Marcia Stephens, Information Resource Specialist, and Jessica Fisher, Coordinator of Programs and Services. Both were extremely knowledgeable and helpful. Within a very short timeframe, my vendor was paid, the controls were installed and I began to drive again! I have regained some independence and it has made a significant difference in my quality of life. Thank you so very much for your assistance. I am very grateful to the National MS Society and all they do, and so appreciate the contributions made by so many. With gratitude and appreciation, Kim Dixon
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.
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LIVING WITH MS
My National MS Society Scholarship Story: Balancing Research and Government by Kathryn Sanchez “What doesn’t kill you only serves to make you stronger,” I think as I explain to my grandma how her son’s MS has progressed into secondary progressive and that he is getting a power chair. When my father was first diagnosed with relapsing remitting MS in 2007, I was only 13 and had little understanding of it. My father had previously gone through numerous medical examinations, only to be told, “You don’t fit the profile for MS.” Well, apparently he did, and was finally diagnosed after confirmation from an MRI and a spinal tap. This diagnosis sparked an intellectual curiosity and changed my life’s journey. I had a change of heart my senior year after realizing my love and knack for science. Until that point, I did not have the faith in myself to do research. Moving five hours away from home for college was a difficult move. However, my father is proud every time we talk about his alma mater, NMSU, and he wouldn’t have it any other way. When someone asks me what my major is, they are usually surprised by my answer of government and biology. Most
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people feel that the two are so very different. This can sometimes be a problem for scientists trying to promote the importance of their research projects. I’m going to school with the hope of doing research in biology and also interested in the policy-making side of research. With knowledge of politics and government, I hope to become an avid researcher in MS and promote this research to the politicians who make important legislation. Participation in the RISE research program in a neuroscience lab will deeply enhance my knowledge of conducting this balancing act when I begin my research career. Our future financial situation is unpredictable, especially since my father had to retire from insurance. I know how lucky I am to have received the National MS Society scholarship, which put me one step closer to reaching my goal of a world free of MS by helping me get an amazing education.
National MS Society scholar Kathryn Sanchez is currently a student at New Mexico State University in Las Cruces.
LIVING WITH MS
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
We want to hear from YOU! What’s on your mind when it comes to MS? We want and appreciate your feedback, ideas, stories and letters to share. You know you’ve got something to say, so here’s your chance. Contact MSConnection Editor James Black via email at james.black@nmss.org.
NEW MEXICO
M OV I N G TOWA R D A W O R L D F R E E O F M S
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2013 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. Awards range from $1,000 to $3,000 for one year. A small number of four-year awards are also offered.
Starting Oct. 1, 2012, 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 mid-January 2013. For guidelines and applications, visit nationalMSsociety.org/scholarship or call the Society toll-free at 1-800-344-4867 (press 1). The Society’s website also has information on additional scholarship opportunities, including federal assistance and other financial aid resources.
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Stuff Our Stocking for the Holidays and Beyond Many people have holiday wish lists at this time of year. At the National MS Society, our wish list is in season year-round. Financial gifts provide the Society with the most
flexibility in delivering programs to everyone affected by multiple sclerosis. However, we recognize that many people have resources and connections to a variety of needed products and services that can also help us reach our goals.
If you would like to donate any of the items listed below or know someone who can, please contact Taylor Mallia with Strategic Philanthropy by calling 1-800-344-4867 or via email at taylor.mallia@nmss.org. • • • • • • • • • • •
Airline tickets Art and sporting event tickets Audio/visual equipment and services Banners and signs Beverages Catering Children’s activities Event supplies, such as tents, tables and chairs Florist services Food Gift certificates or gift cards
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to any store Giveaway items Home modification equipment or services Hotel accommodations Office supplies, including paper, mailing labels and toner Professional photography services Professional printing services for postcards, posters, brochures and newsletters
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Plaques and awards Plastic and paper products Portable toilets at fundraising events Postage Rental and refrigerated trucks Restaurant space and usage for receptions Walkers Wheelchairs
Thank you for making the holidays – and the entire year – bright with your support. TOLL FREE NUMBER 1 800 344 4867 | 7
RESEARCH
Society Launches $18.4 Million in New Research and Training Projects Society awards 52 new grants and fellowships as part of its more than $43 million investment in 2012 research projects In July, the National Multiple Sclerosis Society committed up to $18.4 million to support 52 new MS research projects and training fellowships as part of its comprehensive strategy to stop MS in its tracks, restore function that has been lost and end the disease forever. This financial commitment is the latest in the Society’s relentless research effort to move closer to a world free of MS. The National MS Society’s long-standing investments in basic and translational research have resulted in new treatments and better methods of diagnosis and disease management for people with multiple sclerosis. The Society continues to pursue all promising paths that lead to solutions for everyone affected by MS. To ensure the scientific merit of each research proposal selected, the National MS Society relies on expert advisory committees that include more than 70 world-class scientists who volunteer their time to carefully evaluate hundreds of proposals every year. 8 | JOIN THE MOVEMENT: nationalMSsociety.org
The new research projects include: • explorations of what causes people with MS to experience pain; • a DNA bank to aid researchers investigating the genes that make people susceptible to MS; • new approaches to promoting nervous system repair; and • fellowships to train promising young doctors and scientists in MS research and clinical care. These new projects add substantially to the research goals outlined in the Society’s Strategic Response to MS. There are FDA-approved therapies that can impact the underlying disease course in people with the more common forms of MS. However, none of these can stop progression or reverse the damage to restore function. The National MS Society-funded research helped lead to the development of many of these therapies and continues to be a driving force of MS research.
RESEARCH ROUND-UP
Clinical Trial Shows Promise for New Therapy for Relapsing MS In a clinical trial involving 1,169 people with relapsing-remitting multiple sclerosis, oral teriflunomide reduced relapses compared with placebo over at least 48 weeks. Of two different doses tested, the higher dose also slowed progression of disability. This is the third completed of five phase III studies involving teriflunomide in multiple sclerosis. An application for marketing approval of teriflunomide was accepted for review by the U.S. Food and Drug Administration last fall. These and results from additional studies should help define the short-term safety and promise of teriflunomide as a potential new therapy for relapsing MS.
New MS Drug Application Filed for FDA Review In June, Genzyme announced that it had submitted a new drug application to the FDA for approval to market alemtuzumab – under the proposed name Lemtrada – for treatment
of relapsing MS. The application was based on positive results from several clinical trials involving people with relapsing-remitting MS. Alemtuzumab is given by a cycle of IV infusions only once per year. The FDA review process generally takes from six to 10 months. “People with MS need more treatment options. If the FDA agrees to file this application and its review finds alemtuzumab to be safe and effective, it would represent a significant new treatment advance,” said Dr. Timothy Coetzee, Chief Research Officer of the National MS Society.
Botox Research Moves to Reduce Arm Tremors Botox significantly reduced arm tremor, and improved arm and fine hand movements and function, in a small study of people with MS. If confirmed in a larger study, this research may yield a new strategy to address this common and disabling symptom of MS, which is often resistant to treatment.
RESEARCH
Italian Study Finds Therapies Reduce Risk of Disease Progression Researchers who studied outcomes for 1,178 people with multiple sclerosis from three MS centers in Italy have concluded that using disease-modifying therapies significantly reduced the risk of progressing from relapsing-remitting to secondary-progressive MS. This study adds to the body of evidence suggesting that MS therapies improve future outcomes for people with MS, having a positive effect not only on inflammation but also on the damage to nerve tissues that causes progression of disability over time. The study requires further confirmation, but it indicates the value of pursuing every novel avenue to answer questions posed by MS.
Protein May Hold Key to Immune Attacks According to a new study published in The New England Journal of Medicine, researchers have identified a protein that may be a target of the immune attack in some people with MS. An immune response to
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this protein – called KIR4.1, which is found on several types of brain cells – was observed in the serum of 47 percent of people with MS who were tested. Further research is needed to confirm these findings, and to fully understand what the role of this protein may play in MS and its potential for developing new treatments. This international study was supported by grants from the German Ministry for Education and Research and the National MS Society, among others.
Christoph Heesen, M.D., and Stefan Gold, Ph.D., with the University Medical Center Eppendorf in Hamburg, Germany, noted that this study may provide the first direct evidence “for a causal link between stress and inflammatory activity in these patients.” They also suggested that the study shows that science needs to be more mindful of “a biopsychosocial model of disease.” This model acknowledges that biological and psychological factors contribute to diseases such as MS.
Scientists Probe Effects of Stress Management on MS Activity
Immune B Cells May Harm Myelin-Making Cells
In a recent study, a 24-week stress management program reduced disease activity on MRI scans significantly more than in a control group. However, the benefits seemed to disappear after the weekly inperson stress management sessions were completed. Future studies should provide more clarity for optimizing the potential benefits of stress management in people with multiple sclerosis. The authors are continuing to examine these results. They also suggest that the use of telephone, Internet and mobile phone interventions may help sustain the results of stress management programs after the program stops, since long-term standard behavioral intervention can be burdensome for patients who must make weekly office visits.
Researchers have found evidence that immune cells known as B cells from people with MS may produce toxic factors that harm brain cells, in particular, cells that make myelin, the key substance needed for nerve transmission. If these factors can be identified and confirmed to play a role in MS disease progression, it may serve as an important target for developing new MS therapies. In the future, it may also become possible to stimulate B cells to turn off the production of this toxic factor in people with MS.
FDA Update Addresses Seizure Risk for Those Taking Ampyra On July 23, the U.S. Food and Drug Administration (FDA) released a Drug Safety Communication to address the risk of seizures in people with MS who are starting
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Ampyra (dalfampridine, Acorda Therapeutics). Ampyra was approved in January 2010 to improve walking in people with multiple sclerosis. Seizures are a known side effect of Ampyra and seizure risk increases with higher blood levels of the drug. Based on its evaluation of postmarketing reports of seizures occurring in people with MS on the therapy, the FDA is updating prescribing information for Ampyra. The update advises that kidney function should be checked before starting Ampyra and monitored at least annually, because impaired kidney function can result in high blood levels of the drug. The FDA also emphasized that patients who miss a dose should not take extra doses, since an extra dose of Ampyra can increase seizure risk. In an evaluation of adverse event reports, most of the seizures happened within days to weeks after starting the recommended dose and occurred in patients having no history of seizures. Most of those who experienced seizure were at least 50 years old and were at risk for mild, age-related kidney impairment. The FDA communication noted that “potential benefits of Ampyra treatment must therefore be carefully considered against the potential risk of seizures before using Ampyra in patients with mild renal impairment.”
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