MS CONNECTION SPRING 2011 by Jennifer Gainza

NORTHERN CALIFORNIA CHAPTER

MOVING TOWARD A WORLD FREE OF MS

SPRING 2011

DEALING WITH THE EMOTIONAL ASPECTS OF MS NORTHERN CALIFORNIA CHAPTER PROVIDES A VARIETY OF RESOURCES

The Northern California Chapter provides a variety of resources to assist people in dealing with the emotional aspects of MS, including self help groups, counseling groups, workshops, and other programs geared toward supporting the quality of life for people living with and affected by MS.

Counseling Your peers can also be a great source of support and you can reach out to them through connecting with a volunteer peer counselor or a chapter affiliated self-help group. The Chapter’s peer counseling program provides emotional support from people who know what it’s like living with MS. Peer counselors are trained to speak about the challenges of living with this disease to others with MS, to the families and friends of people with MS, and to the general public. The Northern California Chapter’s Peer Counseling Program is expanding. We recently completed training with nine new peer counselors. Emotional Wellness Monthly Tele-Series We are excited to present an on-going Emotional Wellness Tele-Series with a new topic offered every month. Life Coach and Psychotherapist Catherine Freemire, LCSW leads the discussion on topics related to living with MS. For more information, call us at 800-344-4867 or visit our online calendar at www.msconnection.org

MS CONNECTION SPRING 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

EVENTS

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. We welcome all athletes who want to make the world a better place. Experience, location and race distance are flexible. What’s not negotiable is the commitment our runners make to raise funds towards creating a world free of MS. Be part of the team in 3 easy steps: 1. Choose a marathon or a triathlon to compete in. This is the first year the MS Society will partner with the San Francisco Marathon, but you can pick any event in the state, country, or world to participate in and still be part of the team. 2. Start Fundraising - We want to support each member of the team in achieving a $1,000 fundraising goal. We will give you tips, tricks, and an online fundraising center to support you.

SHOOT OUT MS Janine Vanier has been a Walk MS fundraiser for many years as the team captain of TeaMSters. In 2009 Janine held the first Shoot Out MS, a skeet shooting event, with the support of her employer and local Teamsters Union. Through their efforts at Shoot Out MS Janine and her team raised $44,000 in support of the National MS Society. With so much success and support it is no surprise that Janine rallied her team to once again support the Society at the 2nd annual Shoot Out MS event in the fall of 2010. In February, Janine and Mark Gagliardi came to present the Chapter with a check for $50,500. In an email to her friends and coworkers announcing the success of the event Janine wrote: “You are such an inspiration to me; you give me strength, hope and stamina to continue to do whatever I can to bring all of this terrible disease to an end.” Janine is an inspiration to all of us at the Chapter and is raising hope across Northern California with her efforts and commitment. Thank you Janine and Mark and we look forward to next year’s Shoot Out MS event!

3. Train - This part is up to you but we have created some training tips and hints to help you along the way. To learn more, visit www.msconnection.org. Mark Gagliardi and Janine Vanier presenting a check for $50,500 to Chapter President Janelle Del Carlo TOLL FREE NUMBER 1 800 344 4867

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ADVOCACY

THE PUBLIC POLICY CONFERENCE: ONE ACTIVIST’S PERSPECTIVE BY TAMMY PILISUK

I’ve been a volunteer MS activist for about 20 years. My motivation? My mom has lived with MS my whole life and this continues to have a profound effect on my family. I’ve had the privilege of attending the National MS Society Public Policy Conference (PPC) a number of times over the years. The purpose is to give local advocates, like me, an opportunity to get engaged in federal advocacy. What does it mean to me? I get to break down abstract “policies” and relate them to real-life needs. I’ll admit it, I’ve seen the good, the bad and the ugly. When you’re involved in advocacy you might be pushing for great changes, or fighting just to maintain existing meager services. Yet there’s always something uplifting about going to our nation’s capitol to fight for things I believe in. And this is all the more so with several hundred other people who are there to do the same thing! In short, when I attend the PPC, I can’t shake that feeling that maybe it really is possible to affect positive change. Attending the PPC is time I set aside to immerse myself in a few top priority federal policy issues. Sometimes these issues are deeply personal. For example, this year we championed MS adult day achievement centers, a bill sponsored by the congresswoman who represents my parents. The importance of adult day services for my mom and my family have been immeasurable. Knowing what an important gap these services fill in the long-term care continuum, it was a privilege to share my family’s story. I got to explain to every Congressional representative I visited what access to such services can mean to my parents and to me. The PPC organizing staff do a top notch job of making the PPC meaningful to both new and seasoned activists. In addition to the focus on meeting with policymakers, activists are given opportunities to share strategies, victories, and even setbacks with one another. I always learn something new. And I take this as a responsibility to bring back to my talented and dedicated Government Relations Committee back home. I can only imagine that, repeated hundreds of times, this can energize National MS Society advocacy efforts across the country all year long.

What You Can Do: • Sign up to be an MS Activist and receive news and updates on health policies, help find solutions to MS issues, and take action on legislation that matters. Visit us our website www. msconnection.org to sign up today. • Call your members of Congress urging them to support the three key priorities listed above for persons living with MS and their loved ones. To obtain more information about any of these legislative priorities, contact Stewart Ferry or 800-344-4867. 4

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ADVOCACY

NEW PATIENT PROTECTION LEGISLATION We need your help NOW! We know that the out of pocket costs for MS prescription drugs can overwhelm family budgets and affect a patient’s adherence to these critical regimes. It has been an issue at the forefront of the advocacy efforts of the National Multiple Sclerosis Society across the country. This year in California, Assemblywoman Fiona Ma (D-San Francisco) has introduced Assembly Bill 310 to cap the out of pocket costs for very expensive specialty drugs, including MS injectable medications, to assure that patients can afford and access their prescription drugs. Commercial health plans in California have introduced discriminatory “specialty tier” cost structures. Rather than paying a flat rate for medication, Californians with medications on specialty tiers – which include the most expensive medications – can pay coinsurance of up to 35% of the total cost of the medication. For a patient with a chronic condition, the added financial burden of specialty tiers can be hundreds or thousands of dollars per month. AB 310 would eliminate so-called “specialty tier” pricing for medication, place a cap on patient copays, and limit the annual out-of-pocket expenditures for California patients. The Multiple Sclerosis California Action Network (MS-CAN) will be working closely with Assemblywoman Ma’s office to ensure this legislation’s success. The first step toward building our case for the need to cap the out of pocket costs for specialty drugs is to identify those MS patients who have been burdened by this problem. In moving this bill through the legislative process we need people’s stories as well as individuals who have been affected by this problem to appear at press conferences and hearings. If you or someone in your family living with MS have difficulty meeting the out of pocket costs for your MS drugs, please contact the Chapter as soon as possible. Your help is critical in this effort. Contact Stewart Ferry, Public Policy Director at 800-344-4867.

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COMMUNITY

MOMENTUM MAGAZINE NOW AVAILABLE FOR IPHONE AND IPAD

CONSIDER THE GARDEN by Kimberly Childers I’ve always found gardening to be therapeutic. Spring can be a little challenging and hopefully the constant shifts in the weather, sun to rain, rain to sun, hasn’t gotten your head in a tangle! Spring is a great time to get into the garden.

A fully interactive edition of Momentum, the national magazine of the National MS Society, is now available for use on the iPhone and iPad. Users can download the Spring 2011 issue— and all issues going forward—by searching for “Momentum magazine” in the Apple Apps Store Bok Choy is a new favorite of mine. Baby Bok on the user’s device. Choy to be more specific, in the sauté pan, with a little sliced shallot or green onion, is superb. Momentum for iPhone and iPad includes all The white part of the plant is crisp and delicious editorial content from the print edition. It also tossed in salads, as well. I’m tempted to obtain offers RSS feeds to all the News Bulletins on the some seeds or plants and grow them in my Society’s home page, our live Twitter feed, and potager (small French kitchen garden). every video on our YouTube channel. Bring some fresh flowers inside or recruit It also allows readers to: someone to help you. Daffodils are starting to bloom in their yellow profusion. A bouquet of • E-mail articles to others flowers will instantly brighten your home and • Post links to articles on Facebook and your weary winter spirit. Twitter • Post personal comments or questions to the articles CONNECT WITH US • Zoom in and out to increase readability ON FACEBOOK! The print edition is free to anyone with MS. It is also free to healthcare professionals who are on chapter referral lists. All others are invited to read it online. Alternatively, you may request a year’s subscription (4 issues) of the print edition with a donation of at least $30. Contact us at 800-344-4867 to request your copy of Momentum.

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The Northern California Chapter of the National MS Society has over 1850 fans on Facebook - are you one of them? If not, become a fan today! The page offers a unique forum for people to connect, network and discuss everything from symptom management to ways they’re supporting the movement. Connect with us today at www.facebook.com/msnortherncal

CHALLENGE WALK

COLLEEN BROWN DARES YOU TO TAKE THE CHALLENGE

challenge walk

Challenge Walk’s 2010 Most Inspirational Walker shares her reasons for walking 50 miles over 3 days for the past decade. Q: When were you diagnosed with MS and how did that affect you? A: I was diagnosed 10 years ago, in February 2001. That diagnosis served as a reality check for me. Once I got over the initial shock, I decided to make the most of each and every day. Q: Why did you join the Challenge Walk and what was it like that first year? A: I have always done other physical charity events. When I was diagnosed, I figured I should concentrate my efforts a little closer to home. That first year was life changing. I walked away -- ok, I limped away --feeling like there was NOTHING I couldn’t do. Q: How has the event changed over the past 10 years? A: We used to sleep on gymnasium floors and shower in portable shower trucks. I was nearly brought to tears of joy at the end of the first day while soaking in the bath tub of my hotel room! In all seriousness, the event gets better each and every year. Q: What’s your favorite part of Challenge Walk MS? A: The thing that really stands out is the camaraderie. There’s something very special about being surrounded by an amazing group of people that are whole-heartedly dedicated to putting an end to this disease. I also look forward to meeting new people each year; learning their reason for participating inspires me. These people become more than just friends; they become extended family members. Q: Why should other people participate? A: You honestly don’t know what you are capable of until you complete a Challenge Walk. It really is life changing. Q: Anything else we should know? A: I once challenged my team to raise $50,000. I told them if they raised that amount, I’d let them shave my head. They responded by raising almost $70,000 and they shaved my head on stage in front of our fellow Walkers. Yeah, life changing all right. Join the Challenge Walk MS for the 10th Anniversary Celebration on September 23-25 by visiting myMSchallenge.com or calling (800) 486-6762. TOLL FREE NUMBER 1 800 344 4867

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NEWLY DIAGNOSED

CONNECT WITH AN MSFRIEND No matter how wonderful friends and family can be, there are times when people want to talk to someone who understands exactly what they are going through—someone who has MS, too. That’s where MSFriends come in. Volunteers with MS connect with callers to share how they live with MS and to help with problem-solving or challenges people with MS face in relationships. They may also help with symptom management. People can call to speak to an MSFriend at 866673-7436, 7 a.m. until midnight, Eastern Time. Or they can leave a message and get a call back the next day. The program got its start in 2005 under the umbrella of the VisionWorks Foundation, but is

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now being administered directly by the Society. “This allows us to expand the ways people living with MS can connect,” said Kimberly Koch, MPA, associate vice president, Family and Support Programs for the Society. “It’s nationwide, so people can get involved even if their chapter doesn’t have a peer support program.” There are currently about 40 volunteers. Koch hopes to expand this to about 100. All have MS themselves, but in the future, other family members or care partners may be recruited. The main difference between the Society’s MS Navigator® program and MSFriends is that the Navigators’ primary job is to get people referred and connected to resources, while the Friends’ job is to listen and provide emotional support. If you’d like to be an MSFriend, call us about training. MSFriends averages 9,000 calls a year, and they are completely confidential. “MSFriends allows people to connect when they feel like it, unlike self-help groups, which meet at a specific time,” said Koch. “If your question comes up at an odd hour, there’s a place to reach out for support.”

LIVING WITH MS

THE CANE MUTINY BY SISTER KAREN ZIELINSKI, OSF Was I imagining eyes on me as I crossed the room? No. They were watching me. It seemed like hours to walk across the dining room to the cafeteria line the first time I used my cane. I was embarrassed and self-conscious. I was not yet 40 years old; it was the 16th year of my MS diagnosis. My physical therapist suggested I use a cane to get around since my balance was off and my legs were weak. She told me a cane would give me more support and stability,and keep me from falling and breaking a bone. It would also signal others to be careful around me, to give me a little more space. It made good sense—but it made me feel like a nerd. People had known for years that I had MS; now messages filtered back to me via friends that “Karen’s MS is really bad. She is walking with a cane now!” There are many invisible MS symptoms, but using a cane is a dead giveaway of weakness in my body and the progression of the disease. In a world where physical appearance and independence are so highly valued, walking

with a cane through a public place was not easy. I was proud. The cane showed my physical weakness. I felt like I was the entertainment of the day. After a few weeks, I just accepted it as part of the many losses of living with MS. If someone stared at me, I stared back at them and asked “What?!” I told them I used a cane for safety. The irony was that as much I tried to fight the emotional stigma of using a cane, I came to appreciate how much better I walked with one. Eventually, I realized the cane was part of accepting reality—acknowledging that I had a chronic disease and needed a walking aid. I swallowed my pride in two ways: I reminded myself that I could still walk, although in a limited way, and I remembered that nobody’s perfect. Karen Zielinski is a Franciscan nun and director of the Canticle Studio for the Sisters of St. Francis of Sylvania, Ohio. She is a freelance writer and former Board chair of the Northwestern Ohio Chapter.

There’s more to this! Go to Walking (Gait), Balance & Coordination Problems at www. nationalMSsociety.org/walking_gait_ problems for an overview of resources and a list of articles, brochures and videos exploring what can be done for walking problems. Or call us for help! 1-800-344-4867.

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NEWS

A WEEK TO REMEMBER

During MS Awareness Week, March 14-20, chapters and individuals nationwide came together to show their commitment to the MS movement. During Multiple Sclerosis Awareness Week , the MS equals campaign was launched. You can share what MS equals to you by going to facebook. com/nationalMSsociety or nationalMSsociety.org/ MSAwarenessWeek.

1, 2011. Dr. Coetzee has researched MS his entire career. Most recently, he was instrumental in founding Fast Forward, the research subsidiary of the National MS Society that focuses on speeding new treatments to market, and served as its president from 2006 to 2010. He received his PhD in microbiology and immunology from Albany Medical College, N.Y., in 1993, and in 1995, received the Society’s Advanced Postdoctoral Fellowship to support his research on the structure and function of myelin. He joined the Society’s Research Department in 2000, where, among other accomplishments, he helped establish the Translational Research Partnerships in Nervous System Repair and Protection in MS, a five-year commitment to fund four large collaborative research teams focused on developing tools and strategies to promote nervous system repair and protection in MS.

SOCIETY’S CHIEF NEW MS LEARN RESEARCH ONLINES OFFICER NAMED Recent and upcoming MS Dr. Timothy Coetzee is the Society’s new chief research officer, effective January 10

Learn Online videos include swallowing difficulties (now up), mood changes (now

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up), MS and the African American community (now up), searching for the cause of MS (two-part series, May 5 and 19), and more. New Learn Onlines in Spanish will debut March 3. View them any time, night or day, at www. nationalMSsociety.org/ mslearnonline, where you can also sign up to receive an e-mail when a new webcast debuts. Transcripts (.pdf format) and podcasts (.mp3 audio format) are available for most programs.

MAY 25 IS WORLD MS DAY More than two million people in the world live with MS. To raise awareness of the global scope of the disease, and to strengthen the worldwide network of people living with MS, the Multiple Sclerosis International Federation started World MS Day two years ago. More than 200 events in 60-plus countries will address this year’s theme of employment and access to appropriate work. Take a survey about work or sign a petition urging leaders and employers to protect the rights of people with MS to work at www.worldMSday.org.

RESEARCH

RESEARCH NEXT STEPS

• Researching what leads to disease progression, • Finding ways to repair damage to the nervous system,

Better identification faster

RESEARCH

• Accelerating the development of new therapies.

Finding ways to more quickly identify progressive MS based on biology rather than on symptoms would mean therapies could be tested earlier in the course of the disease and possibly protect the nervous system from injury.

The turn of the year saw MS researchers assessing their progress in a number of areas. A think tank on progressive MS brought together MS investigators, research funding agencies and industry representatives. And, in January, Dr. Timothy Coetzee, chief research officer of the Society (see News), moderated a panel of MS researchers in a live webcast, “Repairing the Nervous System in MS: Progress and Next Steps.” How does MS progress? At the think tank, which was hosted by the Society and its commercial drug development entity Fast Forward last December in Boston, Society President and CEO Joyce Nelson pointed out that progressive MS is the centerpiece of the Society’s Strategic Response for the next five years, with a focus on:

Some evidence indicates that nerve degeneration occurs independently of inflammatory events, but there is other evidence that degeneration stops when inflammation subsides. Therefore, more research is needed to understand the cause of underlying nerve damage in progressive MS and to identify new targets for therapies. Participants also discussed the need for biomarkers—“footprints” that could help identify or predict MS progression. Think tank participants reported that steady progress is being made in finding noninvasive ways of detecting nervous system damage and whether protection or repair are taking place. Additional issues The participants discussed other important issues, as well. Many clinical trials do not run long enough to make clear whether there is an effect against slow progression. The traditional measurement of disability progression, the EDSS scale, is not sensitive to subtle change, which poses a problem in monitoring progressive MS.

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RESEARCH

diseases, they are good candidates for future And, some previous trials used a mixed clinical trials. population of people with primary progressive MS and secondary progressive New drugs emerging MS. Since it’s not clear that all types of progressive MS would respond the same way, The researchers also talked about repairing mixing participants may be the nervous system by one reason that some past Part of the stimulating the body’s own trials were not successful. conversation included repair cells to be more active or trying several types of stem For a complete wrap-up of how newer approved by cells to repair myelin. Part of the meeting and a webcast treatments may help the conversation included how featuring a panel of several in the battle to protect newer approved treatments participants, visit www. the nervous system in may help in the battle to nationalMSsociety.org/ protect the nervous system in thinktank. people with MS. people with MS. Repairing the nervous “For the first time we’re really starting to see system the emergence of very, very effective drugs for treating inflammation,” Dr. Giovannoni said, On January 11, Dr. Coetzee, chief research noting that these therapies might also help to officer of the National MS Society, was stave off nervous system damage and allow joined by Drs. Peter Calabresi, Ian D. natural repair processes to work, although Duncan, Charles ffrench-Constant and Gavin this has not yet been proven. “We’ve seen Giovannoni for the webcast, “Repairing the people who have highly active disease going Nervous System in MS: Progress and Next on these drugs and improving,” he said. Steps.” The four researchers recently served as leaders of four international teams in the For a full report or to read a transcript of the National MS Society’s Nervous System Repair webcast, visit www.nationalMSsociety.org/ and Protection Initiative, funded through the webcasts. Promise: 2010 campaign. The investigators discussed research on the ways that nerve fibers, or axons, and their protective myelin coatings are damaged. Certain drugs the experts have studied seem to prevent nerve cells from dying in an animal model. Since some of these drugs are commercially available right now for other

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MONEY MATTERS

HOW TO GET STARTED WITH SSDI In order to qualify for SSDI (Social Security Disability Insurance) benefits, a person needs to have paid sufficient FICA taxes, thereby earning “work credits,” in addition to having a disability that makes holding a regular job impossible. Visit www.ssa.gov/ pubs/10029.html for an overview of eligibility requirements and work credits, which are earned each quarter of a year an individual is employed. The SSA (Social Security Administration) recognizes MS-related difficulty with motor skills, concentration, memory, fatigue, vision or side effects of medications as among the criteria for receiving benefits. The SSA will require the following: • The names and contact information of doctors, caseworkers, hospitals and clinics involved, the dates of visits and copies of any medical records. • The names and dosages of all prescription medicines. • Laboratory and test results.

• Work records from your employer. Letters from colleagues or supervisors that support the claim. Start the process Ask your neurologist (and occupational therapist, if relevant) to evaluate your ability to continue working. “Make sure you have your doctor’s help and encouragement from the beginning,” said Kris Erickson, MSCIR, MSSMC, health insurance manager of the National MS Society. “Without that, your claim may be turned down and you’ll have to appeal.” “We also recommend that you journal your symptoms,” Erickson added. “A description of what is happening on a day-to-day basis can make a big difference, especially if you have invisible MS symptoms. Saying ‘extremely tired,’ for example, is less useful than saying ‘MS fatigue, four 45-minute naps a day that interfere with bathing, eating, cleaning the house.’” You can apply online at www.socialsecurity. gov/applyfordisability. Or call 800-772-1213 to schedule an in-person or phone appointment. Keep copies of all the information you give to or receive from the SSA, as well as the contact information for your SSA interviewer. Be patient, persistent and punctual. “And don’t be afraid to ask for help,” Erickson said. An MS Navigator® can provide you with materials to help with the initial application; call 1-800-344-4867. In the event of a rejection, the Navigator will connect you with the appropriate professionals to assist in organizing an appeal. For more information, visit www. nationalMSsociety.org/SSDI or www. socialsecurity.gov/disability.

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WAYS TO GIVE

SECRETS OF WALK MS FUNDRAISING STARS Our Walk MS volunteers raise remarkable sums year after year, often in the face of jobs, family obligations and even MS itself. We asked six fundraising champs from around the country for their secrets. EAST Tracey and Dennis Seabolt, Annapolis, Md. Together they average $11,514 raised per year. “We walk for the vast network of friends and acquaintances living with MS we now have” since Tracey’s sister was diagnosed in 2000, Dennis said. They use every way they can to spread the word—happy hour fundraisers, Facebook, T-shirts. “Let people know what you’re doing and why you’re doing it,” Tracey said. Top tip: Don’t be afraid to ask! “I’ll go in a restaurant and ask them to sponsor us for an event. I walk in a dry cleaner or 7-Eleven and ask them to put up a poster,” said Dennis. “We raised $600 from a bowl where people left their change. I send letters and postcards, asking people who gave before to give more, even double it.” WEST Josh Albers, Torrance, Calif. The 25 family members and friends who walk as Joshie’s Chicken Monkeys raise about $10,000 a year. 14

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Josh’s children ask their teachers, grandparents and friends, his mom hits up her local Rotary club and Josh’s employer has a matching program. “I’m pretty vocal with my MS—people who know me know I have it. I ask everybody— you never know who will say yes.” Top tip: Make your team fun. People want to join if it looks like you’re having a good time. “We’re doing something serious but we don’t take ourselves seriously. We stop along the route for dance routines and we sing songs the whole time.” SOUTHEAST Anthony Poggioli, Apex, N.C. $26,235 raised in 2010 Anthony is captain of Chrissy’s Crew, named for his wife. He’s in sales and marketing, and says about his regular letters and updates, “There’s a way of asking without asking. It’s not being sneaky, but to create excitement and energy. You don’t want to guilt people, but you do want to strike a chord.” Top tip: Keep it simple. “I’m not a big believer in doing multiple events—people have limited time and money. You don’t want to overwhelm them. The goal is obviously dollars, but the Walk is also a day of hope and celebration.”

WAYS TO GIVE

SOUTH CENTRAL Debbie Christensen, Edmond, Okla. Top fundraiser for the Oklahoma City Walk for the past 10 years, Debbie’s 79’ers, named for the year Debbie graduated from high school, garners between $8,500 and $14,000 a year. Debbie writes personal letters to some 300 people. “And if they don’t respond, I might send a second letter.” She added, “I can’t hold a pen so my mother and mother-in-law do a lot of my writing. A friend copies my letters. My church donates the postage. My friends donate the envelopes.” Top tip: Include a self-addressed stamped envelope to make it easy for people to send back a check. “It makes all the difference in the world.” MIDWEST Dolores Bopp Potterton, Naperville, Ill. Her team, Walking with Dolores, raises an average of $50,000 a year. Dolores hosts a “Making Dreams Come True” gala that 150 people attend, with everything donated. “The Walk is what gets me through the whole year. What I love is it’s a celebration of people coming together and saying, ‘Enough of this disease.’” Dolores also organizes young

people to go on service trips. “When people see that I don’t focus only on myself and that I’m helping others, they open their pockets.” Top tip: Tell your story wherever you go. “Many people aren’t knowledgeable about the disease, or live with it in silence.” NORTHEAST Karen Waldron, Albany, N.Y. Raised $17,000 in 2010 Karen and her team Waldron’s Walkers have participated in Walk MS every year since her diagnosis in 1997. Her favorite part of the whole event is a fundraising luncheon, auction and raffle that Karen’s mother, Sylvia D’Aprile, hosts at a local steakhouse. “The luncheon is a celebration of the Walk because lots of people are involved in both,” Karen said. The restaurant donates the food and the staff donates their time. “We frequent that restaurant, and a cousin is an assistant manager. We just asked them one year and they said sure.” Each year the luncheon for Waldron’s Walkers has increased in size, funds raised and awareness spread. Top tip: Try asking a restaurant or other place where you already have a relationship to host a fundraiser to raise awareness of the Walk.

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UPCOMING EVENTS

Walk MS: Northern California 2011 Saturday, April 16 Yuba City, Sam Brannan Park Sunday, April 17 Santa Rosa, Howarth Park Monterey Bay, Loverâ&#x20AC;&#x2122;s Point Park Walnut Creek, Heather Farm Park Saturday, April 30 San Jose, Arena Green Folsom, John Kemp Park Modesto, Downey Park Eureka, Eureka High School

3 days. 50 miles. Accept the challenge of a lifetime.

Sunday, May 1 San Francisco, Golden Gate Park Sacramento, West Steps, State Capitol walk.msconnection.org

i 10th Ann

Southern California 2011

September 23-25 myMSchallenge.com

SAVE THE DATE

Bike MS: Waves to Wine Ride 2011 September 17-18, 2011 1 or 2 day options from 40 to 175 miles Register at: wavestowine.org or 800-344-4867 An unforgettable two-day journey from San Francisco via Highway 1 into Sonoma County. Enjoy six full meals, generous amenities, stocked rest stops every 12 to 15 miles, SAG vehicles, spirited festivities, a wine & beer garden, massage tent, and more. Volunteers are also needed to learn more, please visit www.wavestowine.org 16 |

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versary