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MOVING TOWARD A WORLD FREE OF MS | VOLUME 1 • EDITION 4 2012 SCHOLARSHIP APPLICATION 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, 2011, scholarship applications for 2012 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 2012. For guidelines and applications, visit www.nationalMSsociety.org/scholars hip or call the Society toll-free at 1-800-344-4867 (press 1). The Society’s website also has an informative list of additional scholarship opportunities, including federal assistance and other financial aid PAGE 3 resources.
2011 SCHOLARSHIP RECIPIENTS ANNOUNCED Multiple sclerosis shouldn’t stand in the way of an education. This is why 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 Society established its scholarship program in 2003. In its first year of operation, the program awarded 36 scholarships for a total of $68,000. Since then, this important initiative has continued to grow; in 2011, more than $1 million was awarded nationwide to 639 scholars, an increase of 149 students since 2010. Regionally, the National MS Society is pleased to announce the 2011 scholarship recipients in Arkansas, Louisiana, New Mexico, Oklahoma and Texas. This year, the Society was able to award 61 college-bound students with scholarships ranging from $1,000 to $3,000 each. The Society’s 2011 South Central scholars – listed in alphabetical order by state : ARKANSAS Dallas Barnett Hanna Coker Brittany Curry Katherine Kordsmeier Ashley Renegar Kelly Strickland
OKLAHOMA (cont.) Jeremy Kinsey Grant Morgan Callie Mort Seth Rutledge Whitney Sterett Mackenzie Stout
LOUISIANA Samantha Guidry Lauren Lejeune Troy Norton Joshua Randall Gill Walker Jr.
TEXAS Kelly Ammons Kelsea Baker Bradley Bellows Lauren Brewer Elliot Cleaver Krystal Cortez Kayla Davis Katherine DeHaven Austin Duval Skyler Ewing Sara Fuerst Haley Gaston Kamron Gatlin Brandi Harrison Taylor Hatch David Hatteberg Avery Jones
NEW MEXICO Krisitne Davis Maraka Hannagan Kathryn Sanchez OKLAHOMA Mary Barker Kenneth Black Tracy Gilliam Katie Hanson Alyson Heath
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TEXAS (cont.) Emily Jones Bridgette Kieffer Chelsea Lemons Ryein Marks Ann Martinez Anisha Mathew Mandi Moran Reid Munger Paige Nowlin Austin Payne Bridget Petty Lydia Sancer Aubrey Scott Kiersten Smith Zachary Smith Brenna Stubbs Kassie Trevino Justin Williams Emily Windolph
NATIONAL MS SOCIETY 4125 Carlisle Blvd. NE Suite A 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 Vicki Kowal, Coordinator, Programs & Services Maggie Schold, Manager, Special Events David Peters, Chair, Leadership Council
NEWS
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2011 SCHOLARSHIP RECIPIENTS ANNOUNCED Nationally in 2011, 811 students submitted scholarship applications, up from 742 in 2010, a clear demonstration of the need for this targeted financial assistance program. The continued increase in the number of awarded scholars demonstrates the Society’s ongoing commitment to supporting students affected by multiple sclerosis throughout their academic careers. This year, the Society was able to fund 439 new applicants – up from 313 last year – and 200 renewals – up for 177 in 2010 – for nearly $1.2 million. While this was an increase of $178,950 from 2010, the Society was not able to fund all of the deserving students who applied. Support for the scholarship program comes from foundations, individual donors, the Society’s own employee-giving program and other sources. You can help turn a student’s college dreams into reality when you support the National MS Society’s scholarship program. To learn more, contact your local Society office by calling 1-800-344-4867 (press 2).
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.
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JOIN THE MOVEMENT: nationalMSsociety.org
PLUG INTO LOCAL CAREERS WITH THE NATIONAL MS SOCIETY The National MS Society is interested in professionals who share our vision of a world free of MS. In Texas, the Society has offices in Amarillo, Austin, Dallas, Fort Worth, Houston, Lubbock, Midland and San Antonio. Additional offices in the South Central United States are located in Albuquerque, N.M.; Little Rock, Ark.; New Orleans, La.; and Oklahoma City and Tulsa, Okla. To search current career opportunities with the Society office near you, go online to visit JointheMovementLoneStar.org. From the home page, click About Us in the left-hand navigation bar, followed by the Career Opportunities link. .
NEWS
NOMINEES FOR BOARD OF TRUSTEES NOW BEING ACCEPTED
NEW PEDIATRIC MS HANDBOOK PROVIDES PARENTS WITH TOOLS FOR SCHOOL
Individuals interested in being considered for nomination to the Board of Trustees should submit a letter of interest and a biography, along with name, mailing address, email address and phone number.
In August, the National MS Society introduced a resource for families with a child or teen with MS. The “Managing School-Related Issues: A Guide for Parents Living with a Child or Teen with MS” handbook provides parents with the tools and resources to be their child’s best advocate in the school system. It includes a discussion on the potential impact of MS in the school setting, recommended accommodations and modifications, transition issues, and sample plans and requests for academic accommodations.
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Nominees will be notified of board member expectations, responsibilities, 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, 2011 to: Mark Neagli National MS Society 8111 N. Stadium Drive, Ste. 100 Houston, TX 77054
The handbook is a collaborative project of the Network of Pediatric MS Centers of Excellence, led by the team at the Regional Pediatric MS Center at University of California – San Francisco. It is available on the Society’s website at nationalMSsociety.org, then click through About MS>Who Gets MS>Pediatric MS>Pediatric MS Support Group.
SOCIETY’S 2011 NATIONAL CONFERENCE HEADS TO BIG D
Printed copies are available by calling the Society at 1-800344-4867 (press 1). There is no charge for this new pediatric MS resource.
Hundreds of persons living with MS and volunteers from across the United States will take part in the National Multiple Sclerosis Society's 2011 National Conference in Dallas Nov. 2 – 4. The conference offers opportunities to hear about advances in research, upcoming projects in the MS pipeline and personal stories from those who are committed to the MS movement. In addition, the Society’s volunteer leaders of 2011 will be honored. To take part, visit the Society’s website for details on conference location, registration, applicable fees and more at www.nationalMSsociety.org. or by calling 1-800-344-4867 (press 1).
OFFICES CLOSED FOR UPCOMING HOLIDAYS Society offices will be closed for Thanksgiving Nov. 23-25, 2011. In observance of year-end holidays, Society offices will be closed from Dec. 22, 2011 to Jan. 2, 2012. We will reopen in the New Year on Tuesday, Jan. 3, 2012.
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SIGN UP FOR OUR MONTHLY MS eNEWS Get the latest news on research in your inbox. Go to nationalMSsociety.org/signup.
TOLL FREE NUMBER 1 800 344 4867
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SELF-HELP GROUP
The National MS Society offers a variety of Self-Help Groups throughout New Mexico. For a complete list, visit MSNewMexico.org.
MEETINGS Newly Diagnosed/Contact: Michele 1-505-821-1099 1- 2:30 p.m. third Thursday of each month (beginning in Sept.) North Domingo Baca Multigenerational Center, 7521 Carmel Ave. NE, Albuquerque, NM Roswell/Contact: Shellie 1-575-624-0573 4:30 - 6 p.m. fourth Tuesday of each month Roswell Adult Center, 807 North Missouri, Roswell, NM Silver City/Contact: Marcia 1-575-534-0609 11:30 a.m. first Tuesday of each month Un Mundo Restaurant, 700 N. Bullard Street, Silver City, NM Stay-at-Home Telephone 10 a.m. third Wednesday of each month 1-888-346-3659, passcode 64552 (no registration required; designed for people diagnosed with MS for five years or more)
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RESEARCH ROUND-UP Global Consortium Doubles the Number of MS Risk Genes Identified
In the largest MS genetics study ever undertaken, a global collaboration of scientists has identified 29 new genetic variants associated with MS, and confirmed 23 others previously associated with the disease, verifying a major role for the immune system in the development of multiple sclerosis. The study involved nearly 10,000 people with MS and more than 17,000 controls without MS, and was funded by the Wellcome Trust, the National Institutes of Health, the National MS Society and many other organizations. Most of the genes implicated in the study were related to immune function; more than one-third have previously been confirmed to be associated with autoimmune diseases. In a second study, collaborators showed diseases believed to be autoimmune share many similar genetic variants. To date, the results of genetics studies in MS do not significantly improve the ability to provide genetic counseling to individuals. However, the findings promise to better define the biological pathways leading to MS and enhance our ability to design better treatments for early MS.
Medtronic Reports on Possible Battery Issues in SynchroMed Pumps In July, Medtronic provided physicians with new information about possible reduced battery performance in a small percentage of the SynchroMed drug pumps used to deliver intrathecal baclofen, a medication used to treat severe spasticity. A battery with reduced performance may need to be replaced sooner than expected. In addition, the reduced performance may cause the drug flow rate to be reset to a very low level. In the event of reduced battery performance, a person would experience a significant increase in spasticity and perhaps some withdrawal symptoms as the supply of medication is decreased. Medtronic is not recommending pump replacement because the risk of this change in battery performance is very low and the surgery poses its own risks. The pump’s alarm system will sound if there is a problem. For more information, call Medtronic Patient Services toll-free at 1-800-510-6735.
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RESEARCH
RESEARCH ROUND-UP (cont.) Study in Taiwan Finds Increased Risk of Developing MS Following Virus Attack Researchers have reported that people who experienced an attack of herpes zoster – which usually manifests as the skin rash known as shingles – were more than three times as likely to develop MS over the next year than individuals without such an attack. The findings came from a unique study using a large data set of Taiwanese people who are generally at lower risk for MS than those of European descent. This study warrants confirmation in other ethnic populations. Jiunn-Horng Kang, MSc, M.D.; Herng-Ching Lin, Ph.D.; and colleagues at Taipei Medical University and Hospital reported their findings in the June 2011 Journal of Infectious Diseases. Since initial exposure to numerous viruses, bacteria and other microbes occurs during childhood, and since viruses are well-recognized as causes of nervous system damage and inflammation, it is possible that a virus or other infectious agent is the triggering factor in MS. More than a dozen viruses and bacteria – including measles, canine distemper, human herpes virus-6 and Chlamydia pneumonia – have been investigated to determine if they are involved in the development of MS. Recently, various types of evidence point in particular to an association between MS and the EpsteinBarr virus, a herpes virus known to cause infectious mononucleosis and other disorders.
Company Decides Not to Seek Approval for Cladribine In late June, Merck Serono announced that it had decided not to pursue approval of its oral therapy Cladribine for the treatment of relapsing forms of multiple sclerosis.
According to a company press release, discussions with the U.S. Food and Drug Administration made it apparent that clinical trials of the therapy would not address the FDA’s requirements for approval. Details of these requirements have not been made public. In March, the company had received a letter from the FDA indicating that its application for approval was not ready in its current form and outlining requirements for additional information. The company has stated that it plans to complete the current clinical trials and patient registry that are underway, and that results will be published.
Society-Funded Research Finds Possible Regulator of Myelin Repair
Researchers reported this summer that a molecule – called Axin2 – may be essential to regulating the repair of nerve fiber-insulating myelin, and may be a good target for future therapies aimed at regenerating myelin that has been damaged by the MS disease process. Myelin is the substance that nourishes and insulates nerve fibers and is damaged in MS. Stephen Fancy, DVM, Ph.D.; David Rowitch, M.D., Ph.D.; and colleagues at the University of California-San Francisco reported on a study co-funded by the National MS Society’s Promise: 2010 initiative, the MS Society of the United Kingdom and Northern Ireland, and other funders. This study furthers the Society’s goal of restoring function that has been lost to people with MS by identifying a possible target for nervous system repair strategies.
RESEARCH ROUND-UP (continued p.6)
TOLL FREE NUMBER 1 800 344 4867
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RESEARCH ROUND-UP (cont.) Team Pinpoints Gene-Environment Interaction in Cells from Persons with MS
Studying human cells isolated in the laboratory, researchers have revealed a novel interaction between two genes that influence susceptibility to developing MS, certain environmental factors, and a chemical process called N-glycosylation that modifies the structure of molecules. Together, this may contribute to our understanding of how complex interactions lead to the development of MS. Michael Demetriou, M.D., Ph.D., with the University of California – Irvine and colleagues published their findings in the May 31, 2011 edition of Nature Communications. The team was funded in part by the National MS Society. Dr. Demetriou’s team examined DNA samples from about 13,000 people with MS or controls. The team looked at how four previously reported susceptibility genes that are involved in immune system activities – interleukin-7 receptor-alpha, interleukin-2 receptoralpha, MGAT1 and CTLA-4 – affect N-glycosylation. Researchers then examined how a particular environmental factor such as vitamin D affected this interaction. Results suggest that these genes do alter N-glycosylation in cells isolated in the laboratory, but that both vitamin D and a dietary supplement called N-acetylglucosamine were able to suppress this process in cells and in mouse models of MS. This study provides new evidence for a link between genes and the environment in the development of MS; additional research is needed, however, before it is possible to generalize these findings to all cases of MS.
Bone Health is a Concern with Early MS Researchers reported that low bone mass was more prevalent among people newly diagnosed with MS,
or those with clinically isolated syndrome (CIS, a first episode of MS-like symptoms), than among controls without MS. The risk of bone loss had been known for people with MS, but this study showed that it can occur very early, even before MS has been diagnosed. Stine Marit Moen, M.D., and colleagues at Oslo University Hospital reported their findings in July. The team measured bone density in several areas and the total body in 99 people newly diagnosed with MS, or those with CIS, compared to 159 controls without MS. They also administered a questionnaire concerning risk factors for osteoporosis, a disease that causes bones to thin. More than half of the people with MS or CIS had low bone mass, compared with 37.1 percent of controls, and low bone mass remained significantly lower in the spine and hip even after adjusting for other possible risk factors. The authors concluded that this study “calls for an active approach to optimize bone health in early stages of MS.”
Positive Results Announced from First Phase III Study of Alemtuzumab in MS Sanofi and its subsidiary Genzyme announced that the experimental intravenous therapy alemtuzumab (with a proposed brand name Lemtrada) met one of two primary endpoints by significantly reducing relapse rates in a two-year study comparing two annual cycles of alemtuzumab against standard subcutaneous dosing of Rebif. The study, called CARE-MS I, involved 581 people with early relapsing-remitting MS. The study did not meet its second primary endpoint of slowing disease progression compared to Rebif. Data analysis is ongoing and the company expects to provide a full report at an upcoming medical meeting. Another trial of alemtuzumab, called CARE-MS-II, is currently underway.
RESEARCH ROUND-UP (continued p.7) TOLL FREE NUMBER 1 800 344 4867
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RESEARCH ROUND-UP (cont.) Study Investigates Cost Effectiveness of Therapies to Treat MS
Phase II Trial of Daclizumab Reduces Average Annual Relapse Rate
A study co-funded by the National MS Society, the National Institutes of Health and the University of Rochester examined the cost-effectiveness of therapies to treat MS. Results were released in July 2011, finding that the cost for improving the quality of life for people with MS in the United States is high. The study in no way suggested that anyone appropriate for these treatments should not be on them; in fact, it found that the earlier disease-modifying therapies were used, the more cost-effective they were. This adds to growing evidence suggesting that treating MS early and consistently is the best way to ward off future disease activity.
Biogen Idec and Abbott Pharmaceuticals announced in an Aug. 10, 2011 press release that DAC HYP – a liquid formulation of the monoclonal antibody daclizumab delivered via monthly injection under the skin – reduced the average annual relapse rate significantly in a study of 600 people with relapsing-remitting MS over a one-year trial. Full data from the “SELECT Study” are to be presented at an upcoming medical meeting.
Initial Results Released from Phase III Study of Laquinimod Teva Pharmaceutical Industries Ltd. and Active Biotech announced in August that the phase III BRAVO study – in which the experimental oral drug laquinimod was tested against inactive placebo in a study involving more than 1,300 people with relapsing-remitting MS – did not reach its primary goal of reducing the average number of relapses in a year. However, when the investigators adjusted the data to correct for differences in magnetic resonance imaging characteristics at the start of the study, a significant reduction in average annual relapse rate was observed in the group receiving laquinimod. Further analysis is ongoing. The companies plan to submit applications to regulatory authorities for the treatment of MS in the United States and European Union.
WE HAVE MOVED! The Rio Grande Office has a new location, effective September 19, 2011. Albuquerque Trade Center 3540 Pan American Freeway NE, Ste. F Albuquerque, NM 87107
TOLL FREE NUMBER 1 800 344 4867
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RIO GRANDE
National Multiple Sclerosis Society Rio Grande Chapter 4125 Carlisle Blvd NE Ste A Albuquerque, NM 87107-4806
Knowledge Is Power is a six-week, free, at-home educational program for people who are newly diagnosed. Mail or email formats. To register, call 1-800-344-4867, or visit www.nationalMSsociety.org/knowledge.
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MOVING TOWARD A WORLD FREE OF MS | VOLUME 1 • EDITION 3
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