NORTHERN CALIFORNIA CHAPTER
MOVING TOWARD A WORLD FREE OF MS
| FALL 2011
CALIFORNIA MS RESEARCH FORUM 2011 85 RESEARCHERS GATHER IN SAN FRANCISCO TO ACCELERATE MS RESEARCH
NEW FEATURE - LOOK INSIDE! The health and wellness of people living with MS is at the center of everything we do at the National MS Society. Please turn to page 7 for a comprehensive list of programs and services in your community that are focused on helping people affected by MS move their lives forward. Mark Your Calendar PAGE 7
Poles for Mobility PAGE 4
Stress and MS PAGE 14
85 National MS Society funded researchers came together for the 2nd California MS Research Forum on August 5-6, 2011 in San Francisco. The goal of the event was to bring together locally-funded MS scientists and clinicians from various institutes throughout California to share ideas and information in the hopes of accelerating MS research toward creating a world free of MS. 18 scientists shared exciting data straight from their labs and held extensive discussions on ways to collaborate research efforts. A keynote address on how the Society is working to STOP, END and RESTORE MS was given by Dr. Timothy Coetzee, Chief Research Officer for the National MS Society. Staff and volunteers from all three California National MS Society chapters participated in planning this unique opportunity for information sharing. Prominent MS researchers from the University of California San Francisco, Stanford University, University of California Davis, and the University of California Berkeley represented Northern California research. The National MS Society currently funds over $11 million locally at these academic centers dedicated to promising MS research. Care Act Affordable PAGE 13
MS CONNECTION FALL 2011 National MS Society Northern California Chapter 1700 Owens Street, Suite 190 San Francisco, CA 94158 415-230-6677 | 800-344-4867 Chairman • Thomas Galizia Chapter President • Janelle Del Carlo Newsletter Editor • Jen Gainza 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. The National Multiple Sclerosis Society is dedicated to ending the devastating effects of MS. © 2009 National MS Society, Northern California Chapter
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BOARD OF TRUSTEES Board Officers Thomas M. Galizia, Chair Deloitte Consulting Angela E. Lai, Secretary Wells Fargo Private Client Services David Larson, Treasurer Piedmont Grocery Board Members Laura Black, Audit Chair Needham & Company Katherine Bock Lazard Frères & Co., LLC Nancy Byl, Ph.D. UCSF Physical Therapy and Rehabilitation Science Jonah Chan, Ph.D. UCSF Department of Neurology C. Budd Colby, Ph.D. Colby Biomedical Consultants Elizabeth Crabtree-Hartman, MD UCSF MS Center, Department of Neurology Anthony DeLizza, Program Co-Chair First Light, LLC Michelle Dennedy Oracle Matt Frinzi Powervision, Inc. Douglas S. Goodin, MD UCSF MS Center David R. Hultman Bank of the West H. Penny Knuff Fiduciary Trust International of California Doug Richardson, Program Chair Chuck Robbins Cisco Systems John A. Schafer, MD Mercy Medical Group Dan Stokes JStokes & Associates Emeritus Board Members David Korn Fillmore Marks Gary Ryness The Ryness Company
CHAPTER NEWS
RACE TO STOP MS
RUNNERS RAISE OVER $15,000 Race to Stop MS and the San Francisco Marathon took to the streets of San Francisco on July 31st at 5 am to run for those living with MS. We had 12 runners participate in the SF Marathon and each raised over $1,000 in funds as part of our team. In addition to these team runners, the National MS Society was advertised on the SF Marathon page as a charity partner to over 10,000 participants. For our inaugural event the Chapter raised over $15,000. Runners wore Race to Stop MS jerseys on their journey and staff participated in two cheer stations to cheer our runners on and capture photos. Below is a quote from one of our teammates: “When I initially registered for the San Francisco HalfMarathon,Iconsidereditjustanotherordinary runinmyfullmarathontrainingprogram.Butonce I decided to run and fundraise in honor of a good friendwithMS,I’mnowmoreexcitedaboutrunning thehalfthanthefull.Thankyouforgivingmeaning to my running!”– Kerry P. For more information about the Race to Stop MS program visit www.nationalMSsociety.org/can.
MS CRUISERS We are excited to partner with MS Cruisers to offer an MS Cruise experience for people with MS in 2012! MS Cruisers invite us to join them in 2012 for a 7-day journey to Alaska. To find out more visit them online at http://www.mscruisers.com/alaska.html
ANNUAL MEETING
NORTHERN CALIFORNIA CHAPTER ANNUAL MEETING Sunday, November 13th 10:30 pm – 1:30 pm San Jose, CA Come celebrate a year of progress. Join Chapter members, volunteers and staff to learn about research successes in 2011; celebrate our 2011 fundraisers and volunteers who have gone above and beyond to create a world free of MS; and to elect the 2012 Board of Trustees. Pre-registration is required by Friday, November 4. For cost information and to register, please visit www.nationalMSsociety. org/can
2012 SCHOLARSHIP PROGRAM Do you know a highly qualified high-school senior who has been diagnosed with MS or who has a parent with MS? These high school seniors are eligible for the National MS Society's scholarship program. Additional criteria includes financial need, academic record, participation in school or community activities, and an essay (written by the applicant) on the impact of MS on his or her life. Awards range from $1,000–$3,000 and a small number of four-year awards are offered. Applications for 2012 scholarships will be accepted (online only) between October 1, 2011, and January 13, 2012. For more info, visit nationalMSsociety.org/scholarship or call us at 800-344-4867. TOLL FREE NUMBER 1 800 344 4867
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LIVING WITH MS
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 Courtesy of Jayah Faye Paley, grips). Many www.PolesForMobility.com have adjustable wrist straps and tips designed for walking on flat, steep or rugged terrain. 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,
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feet, hip and back. Less stress on the lower body translates into less fatigue, a frequent symptom of MS. “If you use poles instead of a cane, you may conserve energy,” Kushner said. 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. (Continued on next page.)
Pole primer “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.
LIVING WITH 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.”
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.
SELF-EMPLOYMENT ONLINE COURSE FOR INDIVIDUALS WITH DISABILITIES This internet based online course covers the basics and frequently asked questions that individuals with disabilities may have when thinking about starting a business. Mondays, November 7 - December 12, 2011 *Times for online courses are flexible The five lessons are: • Lesson One: Self-Employment Overview • Lesson Two: Social Security Work Incentives, Medicaid Waivers, and Self-Employment • Lesson Three: Accessing Support Services from Vocational Rehabilitation and Community Rehabilitation Programs • Lesson Four: Community Supports for SelfEmployment • Lesson Five: Quick Launch Business Start-Up All instruction is web based and the lectures are in audio format. Each lesson lasts one week and takes approximately four to five hours to complete. Participants must have the appropriate technical requirements to benefit from the course. A technical requirements fact sheet is available upon request. To register, please call 800-344-4867 or visit us online at www.nationalMSsociety.org/can.
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TOLL FREE NUMBER 1 800 344 4867
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WAYS TO GIVE
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 #11409 to designate CFC #11409 your donation to the Society. For private sector employees Last year, employees from such companies as UnitedHealth Group, American Express, Ameriprise and Toyota helped the Society with their strong participation in workplace giving campaigns. If your company participates, the National MS Society should be listed in your company’s campaign materials under the heading Community Health Charities. If not, ask your human 6 |
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resources department why! (Visit www. healthcharities. org/Our-Charities for more information). Get creative Your company doesn’t offer an employee giving program? More than a third of the nation’s employees work in corporations that do offer a giving program. Talk to your benefits administrator about getting in on this. Or call us to see if we can help.
GROWING THE SOCIETY’S SCHOLARSHIP PROGRAM 2011 was a record year for the Society’s everexpanding scholarship program: over $1 million in new awards and renewals were granted to recipients such as Presidential Scholar Rebecca Merlenbach, Jared Applebaum plans diagnosed with MS at to study aerospace age 15, and Mike Dugan engineering. Scholar Breanna Burkes, determined to become a neuroscientist to stop the disease that affected her mother. A large part of the support that keeps the scholarship program helping students like Rebecca and Breanna comes from individual donors. To find out how you can help, call us or visit www.nationalMSsociety.org/ scholarship and click “Support the Program.”
NEWS
PEDIATRIC MS STUDIES RECEIVE FEDERAL SUPPORT The Society’s network of Pediatric MS Centers has been awarded a fiveyear grant from the National Institutes of Health to study genetic and environmental risk factors for MS in children with the disease. The study will enroll children and teens with Children with MS attend MS and matched Champ Camp, held at Camp For controls without All in Burton, Tex. Photo: Chase MS for a single Shull Artisan Portrait Studios, visit to one of 10 courtesy of the South Central centers around Region. the country— in California, New York, Massachusetts, Alabama, Minnesota, Texas, Pennsylvania and Washington. Four new centers are part of this project in addition to the six created with support from the Society’s Promise: 2010 campaign. To learn more about the study including referral information, please email janace.hart@ucsf.edu or call 415-5142476. For more information about pediatric MS, visit www.nationalMSsociety.org/ pediatricMS.
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.
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NEWS
SOCIETY PRESIDENT AND CEO JOYCE NELSON TO RETIRE
• Increased the Society’s advocacy efforts through the establishment of the MS Caucus in Congress; • Inaugurated financial assistance programs in all Society chapters; and
RESEARCH
After 28 years with the National MS Society, and seven as its president and CEO, Joyce Nelson is retiring as of October 1, 2011. “Although the time has come for me to formally pass the torch of leadership to another, my love for this work and for the people with whom I’ve served will never fade,” she said. “People living with MS have touched my life every day for the past 28 years, providing inspiration for the important work to be done. When the final answers are found and the race is won, I can assure you that I will be there with you to celebrate a world free of MS.” Nelson began her Society career in 1983 as a READaTHON coordinator in the Northern California Chapter and rose through chapter and national leadership positions to become the Society’s president and CEO in 2004.
find and support young scientists doing essential MS research;
• Expanded the nationwide scholarship program. “I know you will join me in wishing Joyce Nelson and her family all the best as they enter this new phase of their lives,” said Thomas Kuhn, chair of the National Board of Directors of the National MS Society.
LIVE FULLY, LIVE WELL – THE HOLISTIC APPROACH TO MS
A new multimedia wellness program, a collaboration between the Society and Can Do MS, launched this June. Called Live Fully, Live Well, it is designed for people with MS and their support partners, and deals with a wide range of topics covering health, relationships and quality of life. Through December 2011, Live Fully, Live Well is offering in-person workshops, videos, and monthly webinars presented by physical and occupational therapists, MS nurse Among her many accomplishments, Nelson: educators, dietitians and other MS experts. The • Founded Fast Forward, a research subsidiary of June and July webinars are already archived the National MS Society that supports clinical on the National MS Society website and can research and fast-tracks clinical trials of MS be accessed at any time. All the subsequent therapies and treatments; webinars will be available on the Society’s website shortly after the program’s air date. For • Established six pediatric MS Centers of details and schedules from August on, log on Excellence; to www.nationalMSsociety.org and search • Created the MS Navigator™ program to provide for “live fully live well.” To register for in-person personal assistance to people with MS; workshops, call Can Do MS at 1-800-367-3101, or email info@mscando.org. • Expanded the Society’s fellowship program to 12
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ADVOCACY
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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RESEARCH
STRESS AND MS
MS. Although this sounds persuasive, Dr. Riise cautions that more research is needed to definitively exclude stress as an MS risk factor.
VITAMIN D IN AFRICANAMERICANS WITH MS
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 differently from those who had not developed 14
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Research increasingly points to low levels of vitamin D in the blood as a risk for developing MS. A new study, [www.neurology.org/ content/76/21/1824] funded in part by the National MS Society, does show that AfricanAmericans with MS have lower levels of vitamin D than African-Americans who don’t have MS. Researchers Jeffrey Gelfand, MD, Ari J. Green, MD, and colleagues at University of California, San Francisco, found that of the group with MS, 77% were deficient in vitamin D, compared to 71% of those without MS. The study, based on examining 339 African-Americans with MS and 342 without the disease, found no link between vitamin D levels and how severe the disease was. African-Americans in general have an increased risk for low vitamin D levels, possibly because their skin has large amounts of melanin, which acts as a filter of ultraviolet light. This in turn limits how much vitamin D the body can produce. Study participants with a higher proportion of European genetic ancestry were less likely to have low vitamin D levels than participants with a lower proportion of European ancestry. The risk of MS in African-Americans is about half that of Caucasians. However, the same researchers previously reported that AfricanAmericans tended to have a more aggressive course of MS than Caucasians, a higher risk for mobility impairments, were more likely to
RESEARCH
CLINICAL TRIALS UPDATE The Society’s annual list of clinical trials in MS is now available online at www. nationalMSsociety.org/clinicaltrials. It features 130 studies that are in progress or recently completed. These cover neuroprotective agents; symptom medications; rehabilitation interventions such as cycling for improving MS-related depression, mobility and cognitive function; and more. develop MS later in life and were at higher risk for symptoms in the optic nerve and spinal cord.
A LINK TO HERPES? Viruses are well recognized as causes of nervous system damage and inflammation, so it is possible that a virus may set off MS. Various types of evidence point in particular to an association between MS and EpsteinBarr, a herpes virus that causes infectious mononucleosis and other disorders. Now, a new study hints at another possible link, this time between herpes zoster and MS.
More than 52,000 volunteers have participated or are currently participating in these studies. Their participation—and yours—makes it possible to look forward to new therapies for MS.
OK TO MIX PREGNANCY AND MS Research continues to confirm it’s OK to mix pregnancy and MS.
A study published online in Annals of Neurology June 27, 2011, compared 432 births to women with MS and 2975 births Researchers in Taiwan have reported that people to women without MS, confirming previous who experienced an attack of the virus-triggered findings that, overall, the women with MS had herpes zoster—which usually shows up as the normal pregnancies. The mean birth weight skin rash known as shingles—were more than three times as likely to develop MS over the next and gestational age of babies did not differ year than individuals who did not have an attack. and women with MS were not at greater risk The study, reported in The Journal of Infectious of adverse deliveries, including Caesarean sections. Diseases (6/7/2011), used a large data set of Taiwanese people. However, since people of It was the first study where researchers were Chinese genetic background are at lower risk able to control for other factors that could for MS than Caucasians, the researchers do not affect outcomes, such as disability levels, know yet if this finding will translate to other obstetrical history and body mass index. populations. TOLL FREE NUMBER 1 800 344 4867
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Northern California Chapter 1700 Owens Street, Suite 190 San Francisco, CA 94158
Emotional Wellness Monthly Teleseries We are excited to present an on-going Emotional Wellness Teleseries with a new topic offered every month. Life Coach and Psychotherapist Catherine Freemire, LCSW leads the discussion on these exciting upcoming topics. Please note: each monthly topic has two separate call times and dates, allowing you to choose a time and date which works best for your schedule. Each monthly topic call is exactly the same, so you only need to register for one time/date per topic. For more information and to register for any or all portions of this teleconference, please call 800-344-4867 or visit us online at www.nationalMSsociety.org/can. Calls are open to anyone interested in attending. How to Set Goals and Achieve Them Tuesday, October 11, 2011 2:00 p.m. - 3:00 p.m. or Tuesday, October 18, 2011 12:00 p.m. - 1:00 p.m. Holiday Traditions: How to Have Happy and Healthy Ones Tuesday, November 8, 2011 2:00 p.m. - 3:00 p.m. or Tuesday, November 15, 2011 12:00 p.m. - 1:00 p.m. Self-Defeating Thinking: How to Conquer It Tuesday, December 6, 2011 2:00 p.m. - 3:00 p.m. or Tuesday, December 13, 2011 12:00 p.m. - 1:00 p.m.