MOVING TOWARD A WORLD FREE OF MS Volume 2• Issue 4
Northern California Chapter
Northern California Chapter Announces David Hartman as New President By David Hultman and Doug Richardson, Co-Chairs, Board of Trustees
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uring the last several months, under the strong leadership of Dennis Linden, Jim Bernuth, and Cyndi Zagieboylo from National and fellow board members Laura Black, Teri Hernandez, Penny Knuff, and Dave Larson, the search committee performed an extensive search, evaluating several potential candidates for the position of President of the Northern California Chapter. After interviewing the final candidates, one individual rose to the top of everyone’s list. It is our pleasure to welcome David Hartman as our new Chapter President.
In his acceptance letter, David wrote “Taking this position is an honor and privilege for me, one for which I am grateful. I’m enthusiastically looking forward to my new role with all the challenges and rewards it will bring.” We also look forward to working with David in building a strong and flourishing Northern California Chapter. Our MS Walks were very successful this year. With 12 walks on four different dates throughout Northern California, we had a great turnout of participants, volunteers, and staff. As we go to press, together we have raised over $1,500,000. The walks CONTINUED ON PG 3
INSIDE THIS ISSUE:
David’s most recent experience included several years of non-profit consulting with Netzel Associates. Prior to that, David held multiple leadership roles with the American Red Cross. He served on the National Multiple Sclerosis Society’s board several years ago and has participated in numerous MS Society biking events. David has a personal connection to MS and has
been an untiring volunteer. His expertise, enthusiasm, and strong leadership abilities are a great fit for the endeavors we must pursue in moving the MS Society and the Northern California Chapter to the next level.
Fundraising Page 3
Advocacy Page 7
Research Page 8
Living With MS Page 13
510-267-9669/1-800-FIGHT-MS Publication of the National Multiple Sclerosis Society, Northern California Chapter 150 Grand Avenue Oakland, CA 94612 Co-chairs David R. Hultman Doug Richardson Chapter President David Hartman Newsletter Editor James Dress The National MS Society is proud to be a source of information about MS. Information provided is based upon professional advice, published expertise and expert opinion, but does not constitute therapeutic recommendation or prescription. The Society recommends that all questions and information be discussed with a personal physician. The National MS Society does not endorse products, services or manufacturers. Sponsorship of Society programs or events does not connote that the National MS Society recognizes superiority in products or services provided by the sponsoring entity over other entities providing like or similar products or services. The Society assumes no liability for the use or contents of any products or services mentioned. Š 2007 National Multiple Sclerosis Society, Northern California Chapter
2007, Issue 3 – Published 4 times per year: Quarterly.
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Can you help us?
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he Northern California Chapter is current seeking volunteers to assist with publication production of our quarterly newsletter, MS Connection. Volunteers should have previous writing experience, and knowledge of desktop publishing software (Publisher, Quark Express) is helpful. If you are interested in contributing articles to our newsletter, please send writing samples and a brief summary of qualifications to: Newsletter Editor, at 150 Grand Avenue, Oakland, CA 94612.
Studies show that early and ongoing treatment with an FDA-approved therapy can reduce future disease activity and improve quality of life for many people with multiple sclerosis. National MS Society medical advisors recommend that people with MS talk with their health care professional about using one of these medications and about strategies and effective treatments to manage symptoms. If you or someone you know has MS, please contact the Society today at www.nationalmssociety.org or 1-800FIGHT-MS to learn about ways to help manage multiple sclerosis and about current research that may one day reveal a cure.
FUNDRAISING
Five-Year-Old Leads MS Fundraising Event By Suzanne Lane
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n her first day of summer, one day after completing kindergarten, Casey Lane created and led a fundraising event for the Multiple Sclerosis Society, hardly something one would expect from a student who hasn’t even begun first grade. But Casey Lane had an idea. “Kibbles are for the dogs, crumbs are treats for friends, and if you give money, you’re kind,” she explained. She came up with the fundraiser’s name and concept of “Kibbles, Crumbs, & Kindness” for her furry friends and neighbors. She designed and distributed flyers along a part of Wildwood Avenue in Piedmont then spent the day baking with her mom. The treats were irresistible - “BARK-be-que” and “Pea-MUTT Butter” -- for the canine crew, and cupcakes and brownies for the rest of the gang. People gathered throughout the afternoon in her front yard to sample tasty treats, all within a comfortable price range, with all the money to be donated to the MS Society. She decided to launch her one-day blitz “because my dad has MS and I wanted to help.” Her dad, Jon Lane, came up with FROM COVER are a great opportunity to remind our clients how important they are to family, friends, co-workers, and the National MS Society. Special thanks to everyone who participated in our MS Walks. Coming in September, we have our Dinner of
the clever donor categories: one dollar, Hungry Contributor; 50 cents, Sweet Tooth Contributor; and 25 cents, Friend of Casey. By day’s end, everyone was surprised to discover they had earned over $200. Dogs in attendance included Freddy, Casey’s Border Collie, Ricky the Bichon Frise, Buddy the Havanese and other passers by. And the best part of the day? “I liked that all the dogs, kids and families came,” she said. Champions and our Waves to Wine Bike Tour, so be certain to check our next newsletter for updates on these exciting Chapter events. Thanks to all of you who continue to go above and beyond to help others affected by MS. Together we can make a difference.
TOLL FREE NUMBER 1 800 344 4867
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FUNDRAISING
Spare Some Time and Strike Back Event Bowls a 300 for MS Research By Christopher Anthony
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n July 28th, the first annual “Spare Some Time and Strike Back” bowl-a-thon took place at Bel Mateo Bowl in San Mateo, CA. The event proved to be a hit, and together we were able to raise a whopping $5,000 for scientific research and to help fund programs for people with Multiple Sclerosis. The community truly came together for this great event, and had a blast doing so! Both my father and my sister have MS. I have been around this disease for a number of years, and am a witness to its devastating affects. The challenges are ongoing and can make daily life quite difficult. As the years have passed, I have felt a desire to do what I can to help combat this disease. Charity events and fund-raisers are a great way to help in that respect. As a result, I have taken it upon myself to participate in raising money to further research MS. If you ever think to yourself, “Hey, maybe I can organize a fundraiser,” then I say to you, “Go for it!” I plan on doing this event annually, and have pondered the possibility of taking “Spare Some Time and Strike Back” nationally.
If you wish to become involved in the “Spare Some Time and Strike Back” event, please feel free to e-mail me at Chrisanthony01@comcast.net. Community involvement is a key component to assisting those who need help with their MS. The bottom line is to never say never, as together we can all make a difference, and hopefully someday find a cure.
The National Multiple Sclerosis Society is proud to be a source of information about multiple sclerosis. Our comments are based on professional advice, published experience and expert opinion, but do not represent therapeutic recommendation or prescription. For specific information and advice, consult your personal physician. The National Multiple Sclerosis Society does not endorse products, services or manufacturers. Such names appear here because they are considered valuable information. The National Multiple Sclerosis Society assumes no liability for the use or contents of any product or service mentioned. 4
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NEWLY DIAGNOSED
My Decisions workbook
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eaming up with your Healthcare Providers is available on our Website at nationalmssociety.org/ mylifeworkbook or by calling us for a copy. This is the first segment of four My Life, My MS, My Decisions workbooks— for newly diagnosed people and everyone else. The need to make decisions can occur at any time in life with MS.
Based on experience This workbook, focused on how to work with physicians and therapists, was written by Karen DeJoe, DO, a doctor who has had MS for over 10 years. She blends her experiences as a professional and a person with MS in discussing practical techniques for getting the best out of these important relationships. The workbook presents case histories of real people with real problems giving users an opportunity to work out solutions to their issues. It also has sample letters, record-keeping forms, and an impressive list of resources for trustworthy information on MS. Future segments in the My Life, My MS, My Decisions series will focus on treatments, clinical trials, and wellness. Dr. DeJoe is a physician consultant for the National MS Society and the Central New England Chapter and is writing a book about the lessons she has learned through having MS. Biogen Idec, Novartis Pharmaceuticals, EMD Serono and Pfizer, and Genentech provided unrestricted educational grants to support this program.
Time to tell your boss you have MS? Stop; breathe! Before your meeting … get technical advice. There is much at stake. You need facts about the ADA (Americans with Disabilities Act) and advice about the kinds of accommodations that have worked well for other people with similar problems. We also think you’ll need some psyching up—just as you do for telling people in your personal life. The National MS Society wants to be your ally in this process. Call us. Excerpt from Disclosure: the Basic Facts, a National MS Society brochure available on our Web site at nationalmssociety.org/ Disclosure, or call us. TOLL FREE NUMBER 1 800 344 4867
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NEWS
Ask medical questions on Curbside.MD
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here’s a new medical search engine—Curbside.MD—that lets you enter medical information, details about a condition, and full questions—even paragraphs. The more the better! You don’t have to limit a search to one or two words or phrases. The site searches the best medical databases for articles. What you get is a “Results Summary Page” organized into user-friendly categories. Quick Consult lists articles that give a broad overview of the topic (good if you want to learn more). Best Evidence provides in-depth articles for experts. Best Hits presents the most relevant results resources. Try www. curbside.md. It’s free.
Virtual gathering for “Real Talk. Real Answers.” n Trying to have a normal social life without MS getting in the way? n Wondering what to do when you’re tired and your friends don’t get it? n Thinking about telling people at work you have MS?
Join us—for real! If you’re young and living with MS, take part in some candid conversation at the upcoming sessions of Real Talk. Real Answers. Living with MS in Your 20s and 30s. The series, sponsored by the Society and MS LifeLines, will be broadcast live on the Society’s Web site. 6
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Relationships: family, friends, and significant others Tuesday, September 25 at 7:00 p.m. ET; Live in Atlanta, Georgia Building a career path with MS Saturday, November 3 at 10:00 a.m. PT; Live in Los Angeles, California Each event will have a moderator, an expert presenter, and a group of young adults with MS for an interactive panel discussion. Viewers who register for the webcast can send in questions and get answers in real time.
Attend—no matter where you live! Visit RealTalkRealAnswers.com to learn how to join the discussion wherever you are. Registration is free. Can’t make the event? The webcast will be posted on realtalkrealanswers.com. This program is sponsored by the National MS Society and MS LifeLines, a free resource sponsored by EMD Serono and Pfizer.
OnStar needs you The National MS Society and General Motors are looking for lost people with MS! Or rather, people who would have been lost but used the OnStar safety and security service to help them out while on the road. The story may be used by the Society and/or General Motors to highlight how innovative products like OnStar touch the lives of people with MS. To share an experience, please e-mail Virley Gottfried at virley.gottfried@nmss.org. General Motors has a longstanding relationship to the Society, including the GM National team (participating in multiple events), which last year raised $144,420 for Society services and research.
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ore than 90% of people responding to a survey by the Society’s Public Policy Office last May said they would like to be more involved in MS advocacy activities. The survey was sent to 14,000 people who have signed up for the MS Action Network. About 2,100 people—one in seven—responded. The survey asked respondents about issues they found most important, tools they could use to be more effective activists, and their level of participation in MS activism.
Ready to move Many said they would attend a town hall meeting, a rally, or write a letter to the editor. Nearly a quarter said they were willing to post information about MS issues on their blog, in chat rooms, or on a Web page. Many MS activists already do.
1. Visit the U.S. Election Assistance Commission’s Web site (www.eac.gov) to access the national voter registration form and information about voting regulations in every state. 2. Contact your local board of elections to find out if your polling place is accessible and what devices are available for people with low vision, poor manual dexterity, or anything else that could interfere with voting. 3. If your polling place lacks accommodation, request changes or ask for reassignment to a place that meets ADA guidelines. These guidelines are online at www.ada.gov /votingchecklist.htm. 4. Some voters with disabilities opt for an absentee ballot. Some states have deadlines for these applications. Go to www.vote411.org and click on Absentee Voting for information.
These are all easy ways to join the movement. Anyone can be an MS activist without leaving town, or even without leaving home.
No Internet? Call 1-800-344-4867 and ask for an MS Navigator.
About the MS Action Network
Get your word out
The MS Action Network is a nationwide group of thousands of MS activists who stay informed on MS issues and take action when necessary. To find out about getting involved, visit nationalMSsociety.org/ advocacy.
The ultimate in advocacy: Vote!
General elections will be held November 6, 2007. Get ready now:
Every day, MS activists all over the country are at work educating policymakers about public policy of great importance to people with MS. Now you can read about what these activists are doing, and add comments and links of your own, at MSActivist.blogspot.com. The blog is updated frequently. Visit often and let your voice be heard.
TOLL FREE NUMBER 1 800 344 4867
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ADVOCACY
MS activists ready to move
RESEARCH
Society funds major clinical trial of sex hormone
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eurologist Dr. Rhonda Voskuhl (UCLA) is leading a team of researchers at seven medical centers to conduct a two-year, controlled clinical trial of estriol, a female sex hormone, added to standard therapy with Copaxone (glatiramer acetate, Teva Pharmaceutical Industries Ltd.) in 130 women with relapsing-remitting MS. The trial is currently recruiting participants. This study is being funded by the Society in partnership with the Society’s Southern California chapter and the National Institute of Neurological Disorders and Stroke.
The role of hormones in MS MS affects women two to three times as often as men. This and other gender differences spurred the Society to launch a research initiative into gender in 1998. Fifty projects supported through this $10 million initiative followed. Among the findings was the possibility that estriol may help protect against the immune attacks that underlie MS. Estriol levels rise significantly during pregnancy, when disease activity declines in most women with MS. “We are very enthusiastic about this new agent,” Dr. Voskuhl said. “Estriol has decades of human safety experience throughout Europe, and it will be given as a pill, not a shot.” For more information about this trial, visit nationalmssociety.org/EstriolTrial. To read about the Society’s gender initiative, visit nationalmssociety.org/Gender. If you don’t have access to the Internet, call us to have the information sent to you.
Major trial for secondary-progressive MS treatment launched
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ioMS, which makes MBP8298, launched a phase III clinical trial this June to test the drug in more than 500 people with secondary-progressive MS. Positive results from a phase II trial and long-term follow-up were recently published in the European Journal of Neurology.
MBP8298 is a synthetic myelin basic protein fragment, or peptide. Researchers believe it may make the immune system of people with MS tolerant of myelin. For more information about the trial, including information on participating, visit clinicaltrials.gov/ct/show/NCT00468611. 8
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The National MS Society only provides grants to support research of already successful therapies.
FALSE. Whether yoga classes, ginseng supplements, or acupuncture, recent studies show that about 75 percent of people with MS use some form of alternative or complementary medicine. For that reason, the Society reports on the latest results of studies on stress management, herbal and nutritional supplements, reflexology, and other complementary and alternative medicines.
FALSE. Research is about discovering things we don’t know—as much as it is about verifying what we think we know. The Society is funding clinical trials of experimental treatments for MS, such as sex hormones (see page 6), and more, including 30 special “high-risk/high-reward” pilot grants to explore new and untested The Society does not support research ideas. For more information on Societyinto progressive MS. funded research, visit nationalmssociety. org/FundedResearch. FALSE. Since its inception, the Society has been actively involved in supporting The Society is currently working studies related to progressive MS. The across borders with researchers in more than 380 research projects currently Canada and other countries. funded by the Society explore virtually every aspect of MS, as well as more basic TRUE. The movement to end MS research into nervous system development is global, and the Society has long and repair and the workings of the immune been involved on an international system. To read about projects specifically level funding research projects all over focused on progressive forms of MS, go to the world including, most recently, nationalmssociety.org/ProgressiveMS, Australia, Cyprus, France, Germany, then scroll down and click on Current Israel, Italy, and the UK. To learn more Funded Research and News. Or call us to about research the Society is funding have the information sent to you. worldwide, visit nationalmssociety.org /InternationalResearch. The National MS Society’s Web site only reports research conducted in the USA.
CLINICAL TRIALS 101
FALSE. As part of its global outlook and commitment to the bigger picture, the Society posts MS-related study results from all over the world at nationalmssociety. org/Bulletins.
For information about clinical trials currently testing MS treatments, go to nationalmssociety.org/ClinicalTrials. This page includes a link to trials currently seeking participants as well as an explanation of trial phases, and news of results.
The National MS Society’s Web site doesn’t report information about research into alternative and complementary medicine.
Call 1-800-344-4867 if you have no Internet access.
TOLL FREE NUMBER 1 800 344 4867
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RESEARCH
True or False?
CLINICAL TRIALS
Current clinical trials in the chapter area Name of study: Marijuana Study for MS: Patients with Muscle Stiffness
study drug cigarette daily for the duration of the study (2 months), or are currently involved in another drug study.
Name of physician: Mark Agius, M.D. Purpose of study: The goal of this study is to learn if marijuana is an effective treatment for muscle stiffness in people with MS. This study uses new techniques to measure the immediate and long term effects of marijuana on muscle stiffness. Eligibility: You may be eligible if you have been clinically diagnosed with MS and are 21 or older. You may not be eligible if you have smoked marijuana in the past 4 weeks, are unable to stop smoking marijuana or tobacco cigarettes for the duration of the study (2 months), have a cardiac or respiratory condition, cannot commit to clinic visits, cannot find reliable transportation to and from clinic visits, cannot, or are not, willing to smoke one Name of study: CombiRx. Purpose of study: Patients with relapsing remitting multiple sclerosis are needed for a clinical trial studying the combination of two FDA-approved treatments at UC Davis Medical Center. All subjects will receive at least one active, FDA-approved agent. Name of study: FREEDOMS Purpose of study: The UC Davis Multiple Sclerosis Program is pleased to announce its participation in a study of the new oral treatment, fingolimod, for relapsing remitting multiple sclerosis (MS). It is believed that slowing the progression of multiple sclerosis depends on early diagnosis and appropriate treatment. The goal is to determine whether this drug will reduce relapse rates, slow the 10 JOIN THE MOVEMENT: nationalMSsociety.org
Details: Study duration is up to 5 months. You will be asked to take 2 pills and smoke 1 cigarette every day of the study. There will be 7 visits over a 2 month period in which a variety of tests will be conducted. There will be a follow-up visit at month 4. You are not allowed to drive for the duration of the study. The pills, the cigarette or both may be a placebo and contain no THC. (THC is the active ingredient in marijuana.) You are not allowed to smoke for the duration of the study, other than the study drug. You are not allowed to smoke marijuana or tobacco 1 month prior to the study. Four of the 8 visits will be up to 5 hours long. We will ask for blood samples at certain visits. Contact: Janelle Butters, R.N., UC Davis Health System, 916-734-6276. Eligibility: The study is open to male and female subjects between the ages of 18 and 60 who have been diagnosed with relapsing remitting multiple sclerosis and have not been on previous immunomodulating therapies. Contact: Please call the UC Davis Medical Center, 916-734-6276. progression of disability and evidence the changes in the MRI similar to the available medications. Eligibility: Age 18 to 55, have had a relapse within past 12 months or 2 relapses within past 24 months, ability to walk without aid, currently not on treatments for MS. Contact: Contact the UC Davis Multiple Sclerosis Program, 916-734-6276.
research trials involving Relapsing Remitting Multiple Sclerosis.
Purpose of studies: The Research and Education Institute (REDI) of Alta Bates Summit Medical Center is currently participating in a number of clinical
Contact: To find out if you are eligible, please call Jennie Barber, 510-849-0417, ext. 10.
Name of study: African-American Multiple Sclerosis Genetics Project.
in a strictly confidential manner.
Purpose of study: The MS Genetics Group at the University of California at San Francisco is dedicated to finding the genetic causes of MS. This knowledge will create new opportunities to prevent and cure this life-altering disease. The more people who participate in this project, the closer we come to understanding the causes of MS. We handle medical records and personal information you share with us Name of study: Yoga Therapy for Multiple Sclerosis Purpose of study: Recent research in Rome has shown that Ananda Yoga practice can decrease fatigue, anxiety, depression and improve quality of life for those with MS. Italian researchers also saw improvements in participant’s functional abilities – but did not measure this. This new clinical trial will take the next step, and will include the investigation into yoga’s effect on the physical capacities crucial to maintaining an active and fulfilling life. The clinical trial will take place at the Expanding Light Yoga and Meditation Retreat in Nevada City, CA. Anyone diagnosed as being in the early stages of Multiple Sclerosis is encouraged to join this study and learn how Ananda Yoga can increase vitality, boost energy, and develop mind/body awareness.
CLINICAL TRIALS
Name of studies: MS Research Studies
Eligibility: If you or a family member has been diagnosed with MS, we invite you to become involved with the AfricanAmerican Multiple Sclerosis Genetics Project. Contact: Clinical Coordinator, UCSF Department of Neurology, San Francisco, CA 94143-0435, or call toll-free 1-866-MSGENES or 1-866-674-3637, or visit www. ucsf.edu/msdb. retreat from January 8-13, 2008, as well as the follow-up visit from May 9-11, 2008; be diagnosed with Multiple Sclerosis, early stage; be independently ambulatory without an assistive device; have signed physician consent (form provided); be willing to practice at home at least 3 times per week for at least 16 weeks; have not been practicing the Energization Exercises (a unique series of exercises to increase body awareness and neuromuscular coordination) regularly for the past year. Contact: For more information, email info@expandinglight.org , call 1-800-346-5350, or visit the website at www.expandinglight.org. This 5-day workshop and follow up weekend are offered at a deeply discounted research price which includes 3 vegetarian meals per day and a total of 7 nights of accommodations. Scholarships are available in cases of financial hardship.
Eligibility: To participate in the study, you must: be able to attend the 8-day TOLL FREE NUMBER 1 800 344 4867
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MONEY MATTERS
Adapted from “ADAPTING: Financial Planning for a Life with Multiple Sclerosis”
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ere are some ideas to help get spending under control:
n Apply for all available programs for which you may be eligible, including VA benefits, Medicare, Medicaid, food stamps, state programs for low-income individuals, and pharmaceutical assistance programs offering lower-cost medications. (An MS Navigator can help. Call us.) n Find a doctor you like and stay with him or her. Frequently changing doctors wastes time and money. (We can send names and our brochure, Choosing the Right Health-Care Provider.) n Ask your doctor to write prescriptions for items you may need, such as a brace or a special bed. A prescription shows medical necessity, which makes it more likely that your insurance will reimburse you. n Put away the credit cards—and only bring them out to pay for emergencies. n Call your local housing authority or talk to your hospital social worker if you are having trouble paying your rent. Ask about “Section 8” programs, in which you pay part of the rent based on income, and the government pays the rest. n If you do not make very much money, you may be able to use the Earned IncomeTax Credit. This will reduce your taxes and may even result in a refund. You can claim this credit on IRS Form 1040. (Call the IRS for more information. The number is in the blue, or government, pages of the phone book.) n If you have many medical expenses, you may be able to deduct them from 12 JOIN THE MOVEMENT: nationalMSsociety.org
your income for tax purposes. Keep all of your medical bills, and all receipts for other expenses related to MS. These include mileage if you drive to doctor appointments and the cost of modifying your home. Show these receipts to your tax preparer. For the entire 72-page book—Adapting: Financial Planning for a Life with Multiple Sclerosis visit www.nationalmssociety .org/ financeguide or call us for a free copy.
Relationship Matters
A Program for Couples Living With MS Minimize the impact of MS on your life Free classes for couples: • Communication and conflict resolution skills • Financial planning • Career choices • Intimacy • Having fun together • Parenting Each couple makes a personalized education plan with an MS Navigator. Options include: Facilitated on-line chats Topic-based teleconferences Audio files for computer or iPod Contact us: 1 800 FIGHT MS (1-800-344-4867) or at couplesprogram@nmss.org Relationship Matters when MS moves in.
Funding for this project was provided by the United States Department of Health and Human Services, Administration for Children and Families, Grant: 90FE009001.
LIVING WITH MS
Get Walkin’ by Dana Bard
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utumn: The kids are back in school and the crisp weather has set off your inner alarm clock: time to get out and get walkin’!
It’s all about commitment—First things first: Decide how many times a week you’ll walk and for how long—start small and stick with it. Fifteen minutes, twice a week for the first month; half an hour, three or four days a week after that. Write up a short contract, sign it, and hang it somewhere prominent. Get the right shoes—The right shoe fits! It should provide arch support, cushioning, and compensate for any stride problems you may have. If you’re buying walking shoes for the first time, test them out in the store. Make sure they’re flexible (can you bend and twist the shoe?), with a relatively flat, unflared heel. Walkers strike with their heels first. If MS has made your gait less steady, consider shoes with leather rather than rubber soles, which may cause you to trip. If you have difficulty finding shoes with leather soles, your shoe repair shop may be able to add one on to an existing shoe, or sand down part of the sole. It’s not the destination—but a destination helps. Today I’ll walk to the video store to return the Harry Potter DVD. Later in the week I’ll walk to the convenience store for milk rather than driving to the supermarket. Mix it up! Techniques to remember—Start and finish with a few minutes of gentle CONTINUED ON PG 14
Face of MS is a winner
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he Society’s Face of MS Web site has won a 2006 INSIGHT Award of Excellence from the National Association of Film and Digital Media Artists. The annual award is given to individuals, businesses, and organizations that have increased public awareness—through film and digital media—about issues that affect our world. Visit FaceofMS.org where people share their MS experience and others learn about what it means to live with MS. If you haven’t sent your story, do so! You can submit text, photos, and video. Easy how-to instructions are on the site. Or “post your thoughts” (on the top menu bar). Check in regularly and tell others about it. New stories are posted daily. TOLL FREE NUMBER 1 800 344 4867
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LIVING WITH MS
FROM PAGE 13 stretching. As you walk, keep your chin up and your shoulders back. Swinging your arms will increase the intensity of your walking. Play it safe—Avoid paths with uneven pavements/sidewalks. If you need balance support, talk to your physical therapist— and walk easy with a cane or walking stick. Never forget—Water, personal identification, a cell phone, keys to the house. Always wear—Sunscreen! Consider a hat with a brim. Sorting it all out—For me, walking alone is the perfect time for meditation, contemplation, or to work out problems I don’t have time otherwise to think about. Walk with a friend—Occasionally I’ll walk with Joyce, who lives across the street.
WAYS TO GIVE 14 JOIN THE MOVEMENT: nationalMSsociety.org
She has a spring in her step, a smile on her face, and a positive attitude—valuable traits in a walking partner. Walk buddies keep each other motivated. Discover a trail—Visit TrailLink.com and search their online database to find a trail near you. Join a walking club—Visit the American Volkssport Association’s Web site, www. ava.org, to find walking events, clubs, workshops, and special programs. Or call 800-830-WALK. Mall walks rule—When there’s rain or sleet, or blistering heat, I drive to the Ridgemont Mall for a temperature controlled environment. No stops at the food court. Keep walkin’ and you’ll be ready for next year’s 2008 MS Walk. Call us for details or visit nationalmssociety.org/Walk to register, learn about setting up your own Walk team, or sponsor someone with a pledge.
by Nancy Jo Black
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am a single mother and grandmother as well as a daughter, sister, niece, historian of sorts and writer. I am still young but have had relapsing-remitting Multiple Sclerosis for 27 years. I had my first attack when I was 19 and still pursuing my college education. I had planned to become a secretary in order to put myself through college to earn a Ph.D. in psychology. Life however, had other plans for me. During my first years with MS, I managed to write and give speeches. I participated in the very first National Barrier Awareness Day and got cutouts made on sidewalks around the Santa Rosa Junior College. In 1998, I researched, wrote, illustrated, edited, and self-published a book, “The Path Back Home.” I made no profit, but hope that someday a publishing house will pick it up. Most of the 700-page book was typed from a hospital bed. It took me 10 years to complete and definitely took its toll, but it was certainly worth it. Shortly after finishing the book, I started one of the new MS medications, Copaxone. After about a year, I went into a 4-year remission. I could not believe it! I gained back much of what I had lost. Today many of my symptoms have come back again, but one thing I always try to remember is to rely upon “tools,” such as a cane, a wheelchair, or a pair of dark glasses, whenever possible. I decided that I would try and locate a tool to pursue my dreams of starting my next book and doing some freelancing, so I did what I’ve done since I was 19 years old whenever I’ve needed advice, counseling, or answers: I called the National MS Society at 1-800-FIGHT-MS.
To my surprise, they had exactly what I was looking for--a grant for voice-activated computer equipment. Each day, I checked my mailbox and eagerly waited for the staff to review my application. When I received a call that said “You are the perfect applicant for this grant,” I was thrilled! Now I have the chance of a lifetime and the satisfaction of doing what I enjoy so much. There are many grants out there that can change your life, so don’t be afraid to pick up that telephone. Financial assistance is available from many sources--club grants, personal grants, government grants-as well as the MS Society. Many of these sources can be found on the internet. And don’t let an application that is not accepted discourage you. Be persistent! Many individuals and organizations have donated or collected donations to help people that are physically or financially challenged and thanks should go to these people. It is their joy to give; celebrate with joy when you receive! Organizations such as the MS Society are there for us; the staff of the MS Society work to improve our lives. They deserve recognition for all the work they do for people with MS and their family members, so give them a pat on the back every now and then by sending them a thank you note, a letter, or a memorable photograph. Thank you to all the people that work at the Society! You make a big difference in our lives.
TOLL FREE NUMBER 1 800 344 4867
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LIVING WITH MS
A Grant Can Change Your Life!
CHAPTER NEWS
Introducing Our New Chapter Staff
T
he Northern California Chapter is proud to introduce its newest staff members. To help fulfill our mission as best we can, the chapter has hired a new Chapter President (see our cover story) as well as new, experienced staff in our Programs and Services and Fundraising departments. These new staff members will help shape the future of the Northern California Chapter.
Beth Diebels Programs Assistant Beth is a Sacramento native and has recently joined the Northern California Chapter Programs department. After her mother’s diagnosis in July 2006, Beth became an active volunteer with the Chapter, and subsequently left the hightech industry to become a paid staff member in our Sacramento office. As the Programs Assistant, Beth will be assisting the Programs staff in all offices. To contact Beth, please e-mail her at beth.diebels@ nmss.org.
Kristin Hesse Vice President, Development Kristin joined the Northern California development team in May, after serving three years with the Greater Washington Chapter in Seattle. During her time with the Society, Kristin was responsible for driving growth in the MS Walk and MS Bike Tour, more than doubling the Chapter’s event income in just three years. In her new role with the Northern California Chapter, Kristin will lead all fundraising efforts for the Chapter. To reach her, email kristin. hesse@nmss.org.
16 JOIN THE MOVEMENT: nationalMSsociety.org
Sarah Hester Volunteer Coordinator Sarah was born and raised in Sonoma County. She graduated from CSU Chico in May 2007 with a B.S. in Health Science with an option in Health Education and a minor in Spanish. During her time at Chico State, Sarah served as the recruitment chair for “Up ‘til Dawn,” a college fundraiser for St. Jude Children’s Research Hospital, and contributed to their record-setting 2007 year for fundraising and attendance. Sarah will be recruiting and coordinating Chapter volunteers for all departments, and can be reached at sarah.hester@nmss.org.
Nicole LiaBraaten Development Manager Nicole recently moved to California from Jacksonville, Florida where she worked at the North Florida Chapter of the National MS Society for 2 years. In the North Florida Chapter Nicole helped plan the MS Bike Tour and 8 MS Walks. As Development Manager at the Northern California Chapter, Nicole will be focused on growing the 11 area walk sites. Nicole may be reached via email at nicole.liabraaten@ nmss.org.
Lisa Matejczuk Emotional Support Manager Lisa earned her MSW degree from the University of Pennsylvania with a specialization in gerontology and aging. She has worked with many diverse populations including foster children, teens, adults, and elders in a variety of
Kim Rivers I & R Specialist After working as an Administrative Assistant for several years, Kim returned to school full-time to complete her degree. After three years of hard work and dedication, she graduated this past May from UC Berkeley with a B.A. in Psychology. Kim recently started here at the MS Society in a temporary position as Office Manager, and as of September, has stepped into a
new role as our I & R Specialist. Kim looks forward to working with all of our affiliates and helping to provide new resources and information to those living with MS. To reach Kim, email her at kimberly.rivers@ nmss.org.
Jaclyn Smoczynski Director of Care Management Jaclyn is no stranger to the Chapter: she previously served as a Senior Event Manager in our Development department from 2000-2003, overseeing events such as Waves to Wine and the MS READaTHON. In 2005, she graduated with a Masters in Social Work from San Jose State University, and has since served as a Case Manager for the Tri-City Homeless Coalition and as a Mental Health Consultant for the San Francisco Unified School District. We’re excited to welcome Jaclyn back to the Chapter to spearhead our new Care Management program. Jaclyn may be reached at jaclyn.smoczynski@nmss.org.
Join Action Alert
H
elp improve health care and other programs and services for people with MS. Join the Northern California’s Action Alert program, and you’ll receive periodic updates on what the chapter is doing at the State Capitol to improve public policy for people with MS. Also, we’ll let you know how you can be a local and national advocate, whether it’s by raising awareness in your community or contacting your legislators. To join Action Alert, contact Stewart Ferry at stewart. ferry@nmss.org or 510-268-0572. TOLL FREE NUMBER 1 800 344 4867
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CHAPTER NEWS
therapeutic roles including mentorship, recreational therapy, support groups and hospice care. Lisa also holds a teaching certificate in the holistic healing modality of Reiki, is currently pursuing a practitioner degree in acupressure, and is an avid supporter of holistic, integrative medicine as well as yoga and meditation. In her new position, Lisa will coordinate all emotional support services for the Chapter as well as oversee the Self-Help Group and peer counseling programs. You can contact Lisa at lisa.matelczuk@nmss.org.
SELF-HELP GROUPS
Self-Help Groups Alameda County
Humboldt County
Alameda, Sharon 510-521-6260 or Ray 510-522-5210 Berkeley, Toni 510-735-7890 East Bay Lesbians, Jane 510-444-5257 Gay and Lesbian Group, Jane 510-444-5257 Fremont, Kim 510-793-0765 Oakland, Barbara 510-482-0266 Oakland: African Americans, Jane 510-865-3698 Oakland: Latinos, Elsa 510-777-1414 Tri-Valley Pleasanton, Mary Beth 925-829-0832
Eureka, Ann Louise 707-839-0177 or Kim 707-445-9803
Kings County NEW, Now Forming, Hanford, Barbara 559-584-1903
Madera County Ahwahnee, Mike and Donna, 559-6588511
Marin County Corte Madera, Verita 415-927-7068 or Anita 415-892-5548
Butte County Chico, Anthony 530-873-2527
Mendocino Mendocino, Joanne 707-937-4929
Contra Costa County Brentwood: MS for lunch bunch, Kathy 925-286-7674 or Julie 925-513-4686 Concord, Oscar 925-673-0984 El Cerrito, Sylvia 510-559-9319 Richmond, Vanda 510-559-1898
Merced County
El Dorado County
Napa County
Placerville, Fred and Stacey 530-644-1188
Napa, Colin 707-944-2262 or Penelope 707-265-9680
Merced: MS Challengers, Susan 209-384-6533
Monterey County Monterey, Susan 831-659-1354
Fresno County Fresno Evening Group, Karen 559-431-4570 Fresno Day Group, Doris 559-299-2072 or Frank 559-291-7088 Fresno: Caregivers of Persons with MS, David 559-229-3631
18 JOIN THE MOVEMENT: nationalMSsociety.org
Nevada County Grass Valley, Helen 530-268-3127 or Dan 530-272-7636
Placer County Auburn, Ruth 530-888-8388 Roseville: Minimal Symptoms Group, Brett or Kelly 916-773-6799 Lincoln, Jerry 916-408-7899
Siskiyu County
Elk Grove, Willie 916-684-1677 or Dorothy 916-684-6849 Sacramento: Moving on with MS, Sylvia 916-349-1324 South Sacramento, Edie 916-688-2674
NEW – Now Forming! Yreka, Wynonna 530-842-1849
San Benito County Hollister Group, Gina 831-636-3241
Solano County Vacaville, Debrah 707-447-9603 (before 7:00 pm) or Marian 707-422-7515 Vallejo, Pam 707-745-3704, Marian 707-745-9333 Solono County Group, Pam 707-745-3704
San Francisco County San Francisco Forum, Dolores 415-467-6186 SF Potluck Luncheon, Karen 415-584-6115 SF Sunset District, Tatiana 415-665-1178
San Joaquin County Stockton, Brenda 209-951-0536 Stockton, Betty 209-368-6026 Tracy, Linda 209-833-6882
San Mateo NEW – Now Forming, San Mateo, Eli 650-377-1970 San Mateo, George 650-593-5154
Sonoma County Santa Rosa, Debbie 707-569-9976 NEW! Rohnert Park / Petaluma, Debbie 707-569-9976 Healdsburg, Kate 707-433-9194 Sonoma Women’s Group, Noreen 707-933-9500
Stanislaus County Modesto, Pati 209-524-8329 or Robert 209-667-5008 Turlock, Bill 209-664-1427 or Frances 209-667-2184
Sutter County Yuba City, Evon 530-701-2189
Santa Clara County Milpitas, Indu 510-656-3408 Palo Alto, Phyllis 650-321-9081 or George 650-593-5154 San Jose, Cor 408-270-8922 or David 408-578-3752 Santa Clara, Brian 408-739-9445 or Susan 408-253-4489
Tehama County
Santa Cruz County
Tuolumne County
Capitola, Tom 831-684-2252
Sonora, Steven or Gloria, 209-532-5646
Red Bluff, Teresa 530-529-4412 or Jodine 530-528-8767
Tulare County Visalia, Mark 559-636-1099 or Dennis 559-635-2609
Shasta County Hope 4 MS, Beth 530-246-8404 or Patricia 530-222-7277 TOLL FREE NUMBER 1 800 344 4867
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SELF-HELP GROUPS
Sacramento County
Dr. Stephen Hauser Speaks at Chapter’s Annual Meeting “New Genetic Discoveries in MS: What They Mean to Patients”
P
lease come join us on Saturday, November 10, 2007 for the Northern California Chapter’s Annual Meeting and Luncheon at the Holiday Inn Sacramento Capitol Plaza. This year’s program is “New Genetic Discoveries in MS: What They Mean to Patients,” and features world-renowned neuroimmunlogist Stephen Hauser, MD. Our keynote speaker, Dr. Hauser is the Robert A. Fishman Distinguished Professor and Chair of the Department of Neurology at the University of California, San Francisco. For the last decade, Dr. Hauser has led a multi-center effort to identify the genes that confer MS susceptibility. Come hear what scientists have learned and what these new discoveries will mean for those with MS.
since 2000. This past February, Mayor Fargo announced she has been living with MS for a decade. In addition to her continued support of the National Multiple Sclerosis Society’s mission for a world free of MS, she continues to advocate strongly for downtown and waterfront development, parks and open spaces, libraries, community participation, and environmental protection for the city of Sacramento. Join other members, volunteers, and staff to commemorate the Chapter’s accomplishments in the past year and to elect the 2008 Board of Trustees. The cost of the program is $25. The program begins promptly at 11:45 AM, and check-in begins at 11:15 AM. Please specify chicken or vegetarian lunch option when registering. Pre-registration is required.
The Luncheon will be opened by the Mayor of Sacramento, Heather Fargo, who is an advocate for persons with disabilities and who has served as mayor
Call 1-800-FIGHT MS (1-800-344-4867) to register.
FREE MATTER FOR THE BLIND AND HANDICAPPED Northern California Chapter
National Multiple Sclerosis Society Northern California Chapter Chapter Headquarters 150 Grand Avenue Oakland, CA 94612 FORWARDING SERVICE REQUESTED