NORTHERN CALIFORNIA CHAPTER
MOVING TOWARD A WORLD FREE OF MS
| SPRING 2012
MS NOW
AN MS RESEARCH REVOLUTION The Society recently launched a research revolution, MS NOW (No Opportunity Wasted), as a comprehensive approach to propel knowledge forward. Over the next five years, the Society will devote $250 million to move MS research farther and faster than ever before. Our commitment is a broad strategy focused on three distinct results: • STOPPING THE DISEASE • RESTORING WHAT FUNCTION HAS BEEN LOST • ENDING MS FOREVER MS NOW includes all Society research – Fast Forward and commercial discovery and development, health care policy, scientific fellowships, rapid response funding, targeted research initiatives, basic and laboratory WALK MS: NORTHERN CALIFORNIA 2012
12 walk sites. One destination. A world free of MS. Visit www.walkmsnorcal.org to register as a walker or volunteer, form a team, make a donation, or be an event sponsor. Step by step, dollar by dollar, Walk MS is changing lives. Look inside to learn more about Walk MS. Do It Yourself Fundraising Walk MS April & May PAGE 5 PAGE 6
discovery, and international consortiums and collaborations. Your support helps fund groundbreaking research all over the world . . . and right here in Northern California. For example, in the area of Restoring Function, Dr. David Rowitch from the University of California, San Francisco was awarded a three-year grant for “APC gene function in oligodendrocyte development and myelin regeneration.” Dr. Rowitch is studying the role of a gene that may be important for myelin repair in MS. Another three-year grant was awarded to Dr. Jeffrey Bluestone, also from UCSF, to focus on Stopping the Disease, by studying "CD4+ FoxP3 lineage cells in CNS autoimmune disease and therapy.” Dr. Bluestone is looking for ways to use the immune system's regulatory mechanisms to stop immune attacks in MS. Please join us in our mission to achieve a world free of multiple sclerosis. To make a gift or to learn more about MS NOW please contact Don Hall, Director of Donor Relations, at 415-2306678 ext. 73015 or Don.Hall@nmss.org.
Society Workshops PAGE 12
Are you a runner? PAGE 16
MS CONNECTION SPRING 2012 National MS Society Northern California Chapter 1700 Owens Street, Suite 190 San Francisco, CA 94158 415-230-6677 | 800-344-4867 Chairman • Angie Lai 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 Angela E. Lai, Chair Wells Fargo Katherine Bock, Secretary Lazard Frères & Co., LLC Thomas M. Galizia, Immediate Past Chair & Governance Committee Chair Deloitte Consulting David Larson, Treasurer Piedmont Grocery Board Members Laura Black, Audit Chair Needham & Company Nancy Byl, PT, 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 Heather Fargo Strategic Growth Council 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 Jay Thayer Salesforce.com Emeritus Board Members David Korn Fillmore Marks Gary Ryness The Ryness Company
ADVOCACY
KEEPING UP WITH HEALTH REFORM BY KIMBERLY CALDER With various provisions of the Affordable Care Act (ACA) kicking in and legislative challenges to the ACA, it can be hard to keep up—particularly on the state level. Here are some Society-vetted sources for reliable and up-to-date information about the impact of the ACA in our area. The National Conference of State Legislatures at www.ncsl.org has a whole section on Health Reform that includes a series of brief reports on a variety of ACA-related topics. The site also includes a searchable database, updated every Tuesday, of state legislation related to the ACA. Search 2012 legislation by state, topic, keyword, status or primary sponsor. The National Academy for State Health Policy at www.statereforum.org offers an online network called State Refor(u)m, which enables direct connection and informationsharing between policymakers, activists and others working on health reform implementation. The federal government’s official site on the ACA at www.healthcare.gov is the best source for hard numbers on the ACA. Click on “The Healthcare Law and You,” then “Implementation Resources” to view an interactive map of the U.S. Here you can click to see, for example, how many young adults are now insured in each state, the number of residents who no longer face a lifetime limit on their insurance coverage, the amount of new funds for community health centers and more. To follow changes in ACA legislation and other public policy issues that specifically affect people
with MS, check in with Society MS Activists at Twitter @MSActivist and visit www. MSactivist.blogspot.com. The Society also regularly updates Frequently Asked Questions on its website at www.nationalMSsociety.org/ ACAFAQ, as more is understood about how the law could impact people with MS. Kimberly Calder is the Society’s director of Federal Health Affairs and Insurance Policy. In Northern California, there is an established Health Benefits Exchange Board charged with implementing Health Care Reform. The exchange board is meeting regularly and the Northern California Chapter, as an advocacy organization, is monitoring its activities, attending its meetings and providing input into key discussions. Specifically, we have made recommendations that the essential health benefits offered to Californians include: • Meaningful habilitation and rehabilitation benefits, including appropriate and medically necessary durable medical equipment. • Insurance coverage be comprehensive enough to protect persons with chronic conditions from less-than-optimal health or financial hardship. • An end to the practice of “specialty tier” drugs where people with high cost drug needs are discriminated against by making them pay more out of pocket than other people. To learn more about the implementation of health care reform in California and the Health Benefit Exchange please access this website: www.healthexchange.ca.gov/ TOLL FREE NUMBER 1 800 344 4867
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TRIBUTE & MEMORIAL
A TRIBUTE GIFT TOUCHES MANY LIVES “I want to do something to honor my sister… to help her and the many others who are affected by the disease … and help find a cure, even if it takes longer than my lifetime.”
informing her that a gift was given by her sister in her honor. Monica is pleased to say, “My sister saves every card. And each time we visit she brings them out and shows them to me. She cherishes the cards and what they represent.” To help honor that special person or event in your life, or to memorialize the passing of a loved one, the National MS Society, Northern California Chapter will recognize each gift with a special Tribute or Memorial card.
Elizabeth Jameson, a local Bay Area artist, designed the artwork featured on the Chapter’s Tribute and Memorial cards. The cards depict We all know someone special: someone we images of the brain affected by MS rarely seen admire, respect, and love. Our relationships with before. Ms. Jameson was diagnosed with MS these individuals are priceless, and honoring the in 1991 and is a pioneer of artwork that deals people who make them possible can be especially with the convergence of medical technology, gratifying. A Tribute gift is a meaningful way to neuroscience and art, reinterpreting the images express your appreciation for that person. to use them to explore the wonder and beauty of all brains, including those with a disease. Celebrate special occasions such as birthdays, anniversaries, weddings or simply extend If you would like to make gratitude by creating a card unique to the event a donation in honor you wish to commemorate. or memory of a loved Monica’s giving to the National MS Society is a perfect example. Since 2004 she has been giving a monthly gift to the National MS Society in honor of her sister who is living with MS. Her reason for giving is simple; “I want to do something to honor my sister … to help her and the many others who are affected by the disease … and help find a cure, even if it takes longer than my lifetime.” Monica’s gifts are received by the Chapter gratefully each month, and in turn a special Tribute card is prepared and sent to her sister, 4
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one, please contact Don Hall, Director of Donor Relations, at 415-2306678 ext. 73015 or Don. Hall@nmss.org. You can also visit our website at wwwnationalmssociety.org/can under the “Donate” section for more information. Ms. Jameson’s cards are full color, but for purposes of the MS Connection newsletter, are shown in grayscale.
WAYS TO GIVE
DO IT YOURSELF FUNDRAISING GETS BOOST A family in Florida who says they like to “eat, drink and throw a good party” hosts a casino night on behalf of the National MS Society. A fellow in Minnesota sponsors an annual fourday event for four-wheeling enthusiasts to ride on trails in the middle of the woods. Other folks have hosted golf tournaments, sailing races, dinner parties, bake sales, hoops for hope basketball and even a strongman competition, a bike ride in high heels and a tabletop decorating contest. A Wall Street–based poker tournament raised over $850,000, but a $200 bake sale is equally appreciated. Diverse as they are, these events are all Do It Yourself (DIY) Fundraising, where people committed to raising awareness and money for the MS movement are limited only by their imagination. DIY fundraising has been going on a long time, but what’s new is an online tool at www.doityourselfms.org, “which gives the same resources as we give to Bike MS and Walk MS participants,” according to Rachael Nuwash, DIY project manager for the Society. These resources include a comprehensive toolkit that covers everything someone who is organizing a DIY event needs to know: establishing a timeline, budgeting, how to make an event memorable, where to hold it, publicity, finding sponsors and volunteers, tips for the day of the event, FAQs and much, much more.
learned and how to create a committee—a core group that will support the effort and whose talents can be utilized. (For example, a friend who’s a graphic designer can design the invitation.) The toolkit also includes flyers, badges and email signature images to download. “The online tools are very intuitive,” said Nuwash, so organizers can easily and quickly reach out to friends, family members and co-workers. “The people who like to organize do-it-yourself events are going to do it no matter what,” Nuwash noted. “Their commitment, creativity and intense connection to the Society are like no other. In turn, we’re committed to supporting people who want to do something now.”
The Beat Rolls On for MS with Chris Anthony On February 25th, Chris Anthony set a new Guinness World Record™ for the Longest Individual Drum Roll at 8 hours,2 minutes! Chris turned his passion into action, and as of press time, he had already raised $7,000 and counting! We are grateful for Chris’ leadership and are inspired by his goal of setting a new Guinness World Record™ while moving us closer to a world free of MS. To learn more about Chris and The Beat Rolls on for Multiple Sclerosis, please visit www.thebeatrollson4MS.com.
People can find out what lessons others have TOLL FREE NUMBER 1 800 344 4867
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NEWLY DIAGNOSED
Each workshop was similarly organized. A speaker would give a presentation and then answer questions. We An in-person workshop at were introduced the Central North Carolina to experts in Chapter medicine, mental health, yoga and nutrition. At some point each evening, we broke into small groups to discuss what we had learned. I remember that one of the most fun and empowering activities was learning how to get a good workout while sitting down. (Who knew?)
creative ways to reach people.” Teleconferencing, videoconferencing and webcasts are a few options. “We plan to have a program in one site and broadcast that program to other sites across our region,” said Roberts. Some chapters are also trying out new formats for workshops, such as offering quarterly workshops with a nurse, or teaming up with an area MS center or university to provide workshops led by doctors.
New frontiers
Peer support programs are another way to connect. Anyone newly diagnosed can call 1-866-673-7436 to have a confidential telephone conversation with a peer with MS through the Society’s MSFriends program. Or they can visit www.nationalMSsociety.org/ onlinepeerconnections to search through online profiles of trained peer support volunteers. Once matched, participants can connect confidentially and one-on-one via telephone or email. To discover the full spectrum of resources that the Society offers, call us at 1-800-344-4867 to be connected to an MS Navigator®.
Of course, things have changed since 1997. While many chapters continue to offer in-person workshops similar to what I experienced, they have also begun exploring additional ways to help people newly diagnosed with MS connect to the Society— and to each other.
MS is not a virtual disease, and the computer isn’t a substitute for personal connection, but we are working to combine the best of both worlds, looking for ways to embrace the information age and to continue to provide the healing power of human contact.
Throughout these programs, chapter staff told us about their services and resources, which included numerous opportunities to volunteer. I soon started volunteering and I haven’t stopped yet!
“Almost every home now has access to the Internet and that seems to be a primary source for information, especially for tech-savvy people,” noted Mary Roberts, associate vice president of the South Central Region. “So we are doing our research to find new and 6
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Helen Russon is a volunteer at the Oregon chapter.
Saturday, April 21 East Bay - Oakland Eureka Yuba City Sunday, April 22 Monterey Bay Santa Rosa Walnut Creek Saturday, April 28 Folsom Modesto San Jose Solano County
walk to create a world free of MS
JOIN US TO CREATE A WORLD FREE OF MS!
Sunday, April 29 Sacramento
REGISTER TODAY! walkmsnorcal.org or 1-800-FIGHT-MS
Sunday, May 6 San Francisco
Every step. Every person. Every second spent and dollar raised. They all add up to an experience unlike any other: Walk MS. This is our time to unite and stand strong. Together we will change lives.
“I am participating in the walk to raise funds and awareness about MS. I hope that one day, someone can receive their diagnosis and cure all in the same breath.” Breanna M.
“Sometimes MS can be lonely “Walk MS is a day to and hard for people that come together with many don’t live with the disease to others who have been understand. I can’t even explain affected by this disease. the feeling that I get when I see More important, it is a all of the orange t-shirts. It is like day to celebrate life!” a realization that there are so - Vanessa E. many of us in this together and we are not alone.” - Kelly G.
NEWLY DIAGNOSED
SOCIETY WORKSHOPS A POINT OF CONNECTION BY HELEN RUSSON
Nadja (middle), diagnosed in 2008
From the moment the doctor told me, “You have MS,” everything changed. I felt a wide range of emotions: relief (because I didn’t have a brain tumor), anger (although I wasn’t sure who to be angry at) and fear of the future. What was this disease, and how would it impact me and the people who were important to me? I had no idea what my new life would be like, or how to get started on it. Like many people, I first turned to research. This was in 1997, before the Internet was in full swing (at least at my house). So I went to the library, trying to learn about MS. I had heard about the National MS Society, but for days I was hesitant to call the number. Finally, I made the call, which led to my second-most important discovery of the year: my chapter was about to begin a series of in-person workshops for people who had just been diagnosed with MS. Each workshop featured a different guest speaker. On the first evening, a neurologist spoke in practical terms about the disease. Her 12 |
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presentation included a slideshow illustrating how white blood cells inexplicably start attacking the protective coating of the nerves (myelin sheaths). She had actually brought a ruptured electrical cord, exposing the frayed wires underneath. That simple prop was probably the most effective tool of my MS education. It helped me realize that if I’m having a hard time lifting my leg, it’s not because I’m lazy or weak-willed. It’s because of those wellmeaning (but very misguided) white blood cells. Afterward, the neurologist answered our questions about the day-to-day realities of living with MS. She also talked about some ongoing clinical trial studies and invited us to learn more about them. (I ended up participating in several such studies, all of which were very rewarding.)
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.
JOIN THE MOVEMENT®
NEWLY DIAGNOSED
Each workshop was similarly organized. A speaker would give a presentation and then answer questions. We An in-person workshop at were introduced the Central North Carolina to experts in Chapter medicine, mental health, yoga and nutrition. At some point each evening, we broke into small groups to discuss what we had learned. I remember that one of the most fun and empowering activities was learning how to get a good workout while sitting down. (Who knew?)
creative ways to reach people.” Teleconferencing, videoconferencing and webcasts are a few options. “We plan to have a program in one site and broadcast that program to other sites across our region,” said Roberts. Some chapters are also trying out new formats for workshops, such as offering quarterly workshops with a nurse, or teaming up with an area MS center or university to provide workshops led by doctors.
New frontiers
Peer support programs are another way to connect. Anyone newly diagnosed can call 1-866-673-7436 to have a confidential telephone conversation with a peer with MS through the Society’s MSFriends program. Or they can visit www.nationalMSsociety.org/ onlinepeerconnections to search through online profiles of trained peer support volunteers. Once matched, participants can connect confidentially and one-on-one via telephone or email. To discover the full spectrum of resources that the Society offers, call us at 1-800-344-4867 to be connected to an MS Navigator®.
Of course, things have changed since 1997. While many chapters continue to offer in-person workshops similar to what I experienced, they have also begun exploring additional ways to help people newly diagnosed with MS connect to the Society— and to each other.
MS is not a virtual disease, and the computer isn’t a substitute for personal connection, but we are working to combine the best of both worlds, looking for ways to embrace the information age and to continue to provide the healing power of human contact.
Throughout these programs, chapter staff told us about their services and resources, which included numerous opportunities to volunteer. I soon started volunteering and I haven’t stopped yet!
“Almost every home now has access to the Internet and that seems to be a primary source for information, especially for tech-savvy people,” noted Mary Roberts, associate vice president of the South Central Region. “So we are doing our research to find new and
Helen Russon is a volunteer at the Oregon chapter.
TOLL FREE NUMBER 1 800 344 4867
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TELECONFERENCES
UPCOMING TELECONFERENCES
Calls are open to anyone interested in attending. Managing MS as a Family Thursday, April 5, 2012 6:30 - 7:30 PM When one member of a family has MS, it is important that the entire family learn how to live with it. Improving or maintaining family functioning is key to helping you, your partner and your children adapt to life with MS. This teleconference will discuss strategies for supporting the family as a whole including communication within the family, talking to kids about MS and navigating parenting challenges while living with MS. Featured Speaker: LuAnn Pierce, LCSW, Care Management and Counseling Provider for the Colorado-Wyoming Chapter of the National MS Society. An In-Depth Look at Progressive MS Thursday, May 3, 2012 6:30 - 7:30 PM This teleconference will look at progressive MS from a variety of perspectives. You will learn about the disease course itself and what we are finding out about progressive MS through research, as well as ways to optimally manage the disease and address its symptoms. This interactive teleconference will also discuss the emotional and family issues that often accompany progressive disease and ways to more effectively cope with those challenges. Furthermore, when family care isn't enough... what kinds of family conversations need to occur, 14 |
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and the kinds of resources and assistance that are available to help. Featured Speaker: Dorothy E. Northrop, MSW, ACSW, Vice President of Continuum of Care Initiatives for the National Multiple Sclerosis Society.
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. Spring Cleaning: More Tips on Clearing Clutter Tuesday, April 10, 2:00 - 3:00 PM OR Tuesday, April 17, 12:00 - 1:00 PM Assertiveness Communication Skill Building: “How to Handle Criticism� Tuesday, May 8, 2:00 - 3:00 PM OR Tuesday, May 22, 12:00 - 1:00 PM The Power of a Positive Attitude Tuesday, June 12, 2:00 -3:00 PM OR Tuesday, June 19, 12:00 - 1:00 PM
RESEARCH
SURVEY SAYS WALKING ISSUES IMPORTANT TO ADDRESS
Susan Cohn-Child, diagnosed in 1995, walks with son Zach
Seventy percent of people with MS who have difficulty walking see that as the most challenging aspect of managing their disease, according to a recent survey sponsored by the National MS Society and Acorda Therapeutics, maker of Ampyra, a drug intended to improve walking.
Respondents to the survey reported that problems with mobility restrict their daily activities and affect their emotional and financial well-being. Some 60% of adults with MS who experience difficulty walking have fallen; for a third of them, a fall resulted in an injury.
RESULTS IN FOR POTENTIAL MS THERAPIES • In a two-year Phase III trial, the oral MS therapy BG-12 significantly reduced—by up to 51%— the average number of annual MS relapses. More than 1,400 people with relapsingremitting MS participated in the study. BG-12 is thought to inhibit the immune cells and molecules that are involved in MS attacks on the brain and spinal cord. This study should help to define further the safety and promise of BG-12 as a potential therapy for relapsing MS. • The experimental intravenous MS therapy alemtuzumab significantly reduced relapse rates and the worsening of disability in a two-year Phase III study that compared alemtuzumab to Rebif. The study, called CAREMS II, involved 840 people with relapsingremitting MS. The FDA has fast-tracked alemtuzumab, which should speed up future review.
• A study of 324 patients comparing the MS oral therapy teriflunomide with Rebif found no significant difference in the numbers of While 65% of those surveyed reported walking participants in each group who experienced difficulties or trouble with balance, 40% events defined as treatment failure. “rarely or never” discussed the issues with their Teriflunomide is thought to prevent damage doctor. to the nervous system by immune cells. A previous phase III trial was more successful and “Clearly we need to encourage and empower three others are ongoing. The FDA is reviewing people with MS to discuss walking impairment an application for marketing approval of with their doctor, including newly diagnosed teriflunomide. patients who may be experiencing only mild problems with walking or balance difficulties,” said Nicholas LaRocca, PhD, vice president for To stay current on MS therapies in the pipeline for FDA approval, sign up for MS eNEWS at Health Care Delivery and Policy Research at www.nationalMSsociety.org/signup. the Society. TOLL FREE NUMBER 1 800 344 4867
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Northern California Chapter 1700 Owens Street, Suite 190 San Francisco, CA 94158
Are you a runner and passionate about creating a world free of MS? Race to Stop MS Race to Stop MS offers runners, marathoners and distance athletes of all types the chance to create a world free of MS while pushing their own personal limits. Runners can pick any event in the state, country, or world to participate in and still raise funds for MS. The National MS Society, Northern California Chapter’s has partnered with the San Francisco Marathon. Join our SF Marathon Team and receive free race registration when you raise over $1,000! When you register with Race to Stop MS you will receive your own personal fundraising center and Society staff will support you in your training and fundraising efforts. Email Dina.Bartello@nmss.org for more information.
11th Annual MS DuskBuster - June 2012 Take a mid-week break and join the effort to wipe out multiple sclerosis with the 11th Annual MS DuskBuster 5K Run/ 2-Mile Walk! Starting at the South Tunnel of Polo Fields in San Francisco’s Golden Gate Park, this evening event is great for running teams and enthusiasts, casual joggers, walkers, families and more. We hope you’ll round up some friends, join us for the event and then party with us into the night at our fabulous post-party. Exact date to be determined. Please check the website for more information: www.duskbuster.org