RIO GRANDE
National Multiple Sclerosis Society Rio Grande Chapter 4125 Carlisle Blvd NE Ste A Albuquerque, NM 87107-4806
MOVING TOWARD A WORLD FREE OF MS | VOLUME 1 • EDITION 3
Cyclists Gear Up for MS in Bike MS: Pedal los Pueblos 2011 New Mexico residents will pedal toward a world free of multiple sclerosis during Bike MS: Pedal los Pueblos 2011 on Saturday and Sunday, August 27 - 28. With a goal to raise $125,000 to fund MS research and programs and services for individuals impacted by MS, the annual two-day, 140-mile fundraising ride is fully-supported and features a unique figure-eight route through the scenic pueblos of northern New Mexico. “Each year Bike MS is better than the year before,” said Maggie Schold, Manager, Special Events for the National MS Society. “And this year, we are excited to have NOW and Novartis for MS cycling team here to support the event!”
register today /// bikemsnewmexico.org
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.
BIKE MS :
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+1 505 243 2792, 24 www.BikeMSNewMexico.org
Joleen Trujillo, who was diagnosed with multiple sclerosis in 1991, will ride in tandem with professional cyclist Anne Samplonius at this year’s Bike MS: Pedal los Pueblos.
Schold added that as part of the NOW and Novartis for MS team’s support, professional cyclist and NOW team member Anne Samplonius will ride in tandem with Albuquerque cyclist Joleen Trujillo, who has been living with MS for 20 years.
“I have MS, and this is why I ride,” said Trujillo. “I am thrilled to have been selected to ride with Anne. It is such an honor to be teamed with someone who is doing so much to raise awareness for MS.” Bike MS: Pedal los Pueblos features an out-and-back route and will kick off at 7 a.m. on Saturday, Aug. 27 from the Cities of Gold Hotel & Casino in Pojoaque, NM. Registration for Bike MS is $35, and registered cyclists are required to commit to a minimum fundraising pledge of $250. Visit bikeMSnewmexico.org for more information about riding, donating and volunteering.
INSIDE THIS ISSUE
Give at the Office PAGE 3
Walk this Way PAGE 5
Research: Stress & MS PAGE 6
ACA & ADA PAGE 6
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 Suzanne Lawson, Regional Manager, Marketing & Communications, MSConnection Editor Maggie Schold, Manager, Special Events David Peters, 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.
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NEWS
CCSVI studies one-year update The first-year progress reports from seven Society-funded studies of CCSVI, or chronic cerebrospinal venous insufficiency, were released July 14, 2011. The research teams report being on track in collecting objective and comprehensive data. The studies were launched with a more than $2.4 million commitment from the MS Society of Canada and the National MS Society. The research teams have recruited a broad spectrum of people with and without MS. Already more than 486 people have been scanned using various imaging technologies. Only by refining imaging methods can investigators more reliably validate if a person actually has CCSVI and better understand its relationship to the MS disease process. The full results, to be released after completion, will help guide future steps, including the development of clinical trials to test whether treating CCSVI is safe and effective for people with MS. In the meantime, several of the teams will present preliminary results at medical meetings later this year. To read more about the studies and to get the news of results, visit www.nationalMSsociety.org/ccsvi.
RESEARCH
Clinical trials update The Society’s annual list of clinical trials in MS is now available online at www. nationalMSsociety.org/clinicaltrials.
seem to prevent nerve cells from dying in an animal model. Since some of these drugs are commercially available right now for other diseases, they are good candidates for future clinical trials.
It features 130 studies that are in progress or recently completed. These cover neuroPart of the protective agents; symptom conversation included medications; rehabilitation interventions such as cycling how newer approved for improving MS-related treatments may help depression, mobility and cognitive function; and more. in the battle to protect
New drugs emerging
The researchers also talked about repairing the nervous system by stimulating the body’s own repair cells to be more active or by trying several the nervous system in types of stem cells to repair More than 52,000 volunteers myelin. Part of the conversation people with MS. have participated or are included how newer approved currently participating treatments may help in the in these studies. Their participation—and battle to protect the nervous system in people yours—makes it possible to look forward to with MS. new therapies for MS. “For the first time we’re really starting to see the emergence of very, very effective drugs for Repairing the treating inflammation,” Dr. Giovannoni said, nervous system noting that these therapies might also help to stave off nervous system damage and allow In January Dr. Coetzee, chief research officer natural repair processes to work, although of the National MS Society, was joined by this has not yet been proven. “We’ve seen Drs. Peter Calabresi, Ian D. Duncan, Charles people who have highly active disease going ffrench-Constant and Gavin Giovannoni for on these drugs and improving,” he said. the webcast, “Repairing the Nervous System in MS: Progress and Next Steps.” The four For a full report or to read a transcript of the researchers recently served as leaders of webcast, visit www.nationalMSsociety.org/ four international teams in the National webcasts. MS Society’s Nervous System Repair and Protection Initiative, funded through the Sign up for our Promise: 2010 campaign. The investigators discussed research on the ways that nerve fibers, or axons, and their protective myelin coatings are damaged. Certain drugs the experts have studied
monthly MS eNEWS
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TOLL FREE NUMBER 1 800 344 4867
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LIVING WITH MS
news
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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Want to give at the office? Making a contribution through an employer’s charitable giving program is a convenient, easy way to help us move toward a world free of MS. These programs offer employees the opportunity to make an annual pledge to charity, choosing organizations from a list—and choosing an automatic per paycheck deduction, or a one-time personal check. The federal government and companies nationwide will soon be kicking off their 2012 campaigns. It’s a good time to ask about how to give at your own workplace. For public sector employees The nation’s largest workplace giving campaign is the Combined Federal Campaign (CFC). It is open to federal, military and postal employees. Last year, more than a million people took part, giving more than $281.5 million to thousands of charitable organizations. The National MS Society is in this pool. If you participate, use the code CFC #78000 to designate your donation to the Society. For private sector employees In New Mexico, many employers participate in United Way and Community Health Charities workplace giving campaigns. You may designate the National MS Society on your pledge card to ensure that your contributions support local programs and services, as well as national research initiatives. For more information about workplace giving and the National MS Society, please contact Shelley Kaiser, Manager, Strategic Philanthropy at shelley.kaiser@nmss.org, or 1-469619-4704.
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Walk this way: Using walking poles
Potential tools in the walking arsenal that people with MS might want to consider are walking poles. These are adjustable-length ski pole–like shafts made of very light metal (such as titanium, carbon fiber or aluminum) with handles (called grips). Courtesy of Jayah Faye Paley, www.PolesForMobility.com Because they are used in pairs, poles—which lie between a cane and a walker on the continuum of assistive devices—offer increased balance, steadiness and support, according to Sue Kushner, PT, MS, associate professor of Physical Therapy, Slippery Rock University, Penn., who has spent much of her career working with people who have MS. “You can move a little faster, because bilateral support gives more stability and speed,” she said. Studies suggest that poles reduce the force on joints and help distribute the body’s weight better, meaning less work for the legs, knees, feet, hip and back. Less stress on the lower body translates into less fatigue, a frequent symptom of MS. Jayah Faye Paley grew up in Florida, and when she moved to northern California in her 30s, took up mountain hiking. She found she “didn’t
have the natural footing of people who grew up with it.” She does not have MS. One day she met a fellow using poles, who was, she said, “poetry in motion on the trail.” She was so taken with both him (they married in 2003) and the poles that she made a career of teaching people to use them optimally. An ACE-certified personal trainer, Paley has created two training DVDs, including one for people with mobility challenges. “With minimal training—usually less than an hour—you can walk more fluidly and with a natural pattern because you recruit and strengthen the muscles that support and elongate the spine,” she said. Other benefits, Paley added, are confidence and focus. “You are walking for exercise, not just strolling—the poles are consistent reminders to move better.” “Talk to your physical therapist before you try them,” physical therapist Sue Kushner cautioned. Then choose poles based on your height, weight, hand size, issues (balance, for example) and your fitness or mobility goals. “Make sure they’re the proper height—about waist level, a little higher than a cane—and a comfortable weight. If you’re using them all day, you do care about their weight, especially if you have any weakness in your wrist muscles,” Kushner added. One drawback is that you can’t carry much with poles in both hands. However, a backpack is one possible solution. Good poles cost about $90 to $140 and should last a lifetime.
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RESEARCH
Stress and MS
ADVOCACY
differently from those who had not developed MS. Although this sounds persuasive, Dr. Riise cautions that more research is needed to definitively exclude stress as an MS risk factor. RESEARCH
Stress may play a role in exacerbating MS flares, but does it cause the disease in the first place? A new study suggests that stress does not appear to increase the risk of developing MS. The study, published in Neurology, May 31, 2011, focused on two large groups, totaling almost a quarter million women, from the Nurses’ Health Study, which has followed a large number of female nurses for decades. The nurses were asked to report on general stress at home and at work, and also any physical or sexual abuse as children or teenagers. The investigators, led by Trond Riise, PhD, University of Bergen, Norway, compared the answers between those nurses who had developed MS and those who had not. They also took into account age, ethnicity, smoking habits and other variables that have been linked to an increased chance of developing MS. The researchers found that those who later developed MS had not responded significantly 6
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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.
Up-to-date FAQs on the Affordable Care Act To help people with MS understand the Patient Protection and Affordable Care Act, or ACA, signed into law March 2010, the Society regularly updates Frequently Asked Questions on its website at www.nationalMSsociety.org/ ACAFAQ. On this page, people can find answers to questions like: What if I am about to lose my COBRA coverage? Can children with pre-existing conditions get coverage? Does the law limit lifetime or annual caps on individual coverage? What are “Health Insurance Exchanges”? Can private insurance companies cancel my policy? What about long-term care? When will the “donut hole” in Medicare Part D phase out? The FAQs also explore the regulations pertaining to the ACA provisions, as well as legal challenges the ACA faces. In addition, there are many links to fact sheets and useful websites that provide more in-depth information on specific issues. As various provisions of the ACA kick in over the next few years, the Society will continue providing up-to-date information and links.
New ADA Rules More than 20 years after the enactment of the Americans with Disabilities Act (ADA), noteworthy changes went into effect March 2011. These demonstrate a continued commitment to realizing the full potential of the ADA and to properly enforcing civil rights of people living with disabilities.
The definition of “disability” had been selectively narrowed over the years. Now, the Equal Employment Opportunity Commission’s new regulation is clear. Disability is defined as a physical or mental impairment that substantially limits one or more major life activities, regardless if the disability is in remission. Multiple sclerosis will almost always meet the “disability” criteria because MS limits a major life activity (namely, neurological function). The revised regulations also adopt the 2010 Standards for Accessible Design, setting minimum requirements for new construction or alterations of facilities of some 80,000 state and local governments and of more than seven million public places, including stores, restaurants, hotels, malls, libraries, museums, sports arenas, theaters, medical offices, polling places and emergency preparedness centers. Learn more at www.ada.gov. Also visit the ADA National Network at www.adata.org or call 1-800-949-4232 for information and training on how to implement the ADA in our area. TOLL FREE NUMBER 1 800 344 4867
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