NORTHERN CALIFORNIA CHAPTER
MOVING TOWARD A WORLD FREE OF MS | SUMMER 2011
2011 SCHOLARSHIP AWARDEES
NORTHERN CALIFORNIA CHAPTER PROVIDES A VARIETY OF RESOURCES The National MS Society’s scholarship program where he wants to fight for people’s rights. helps students affected by multiple sclerosis Spencer is from Berkeley. pursue a college or technical school education. It is open to high school seniors who live with MS Christian Wright plans to attain a bachelor’s or have a parent living with MS; or anyone living degree in business marketing at William Jessup with MS who has not yet University. Christian is been to a post-secondary a competitor on the US school. Mountain Biking Team “Regardless of the situation at hand, if we can be positive, learn and holds many wins and In addition to the medals, including both a and grow and try to help others emotional toll, MS National Silver and Gold while in the process, this world can have a substantial Medal. Christian is from would be a much happier place.” Auburn. financial impact on a family. The direct and - Christian Wright, indirect costs of MS, Catherine Yount plans 2011 Scholarship Awardee including lost wages to study film production — even for those with and screenwriting at health insurance — are estimated at more than University of California, Los Angeles. She $69,000 annually, or $2.2 million over a lifetime. hopes to one day apply her experiences and This makes funding a college education that knowledge to her screenplays and bring greater much harder. understanding to the world. Catherine is from Rocklin. In 2011, $12,000 in scholarship funds was distributed to five students in the Northern Alicia Diaz will attend University of California, California Chapter territory. This year’s Irvine where she will obtain her bachelor’s recipients are: degree in history. She is very passionate about education with hopes to become a high school Spencer Stevens plans to get his bachelor’s History teacher. She plans to attain her teaching degree in liberal arts, continue on to law school credential and eventually earn a Ph.D. Alicia is and eventually become a civil rights attorney from San Jose.
MS CONNECTION SUMMER 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
SCHOLARSHIP
McKenzie Hoffman plans on attending University of California, Los Angeles. Once there, she hopes to mix her passions of nature and politics together while earning her bachelor’s degree in environmental economics. McKenzie is from Redding.
Program Continues To Grow Across the Country The Society established its scholarship program seven years ago and it immediately became a source of great encouragement for families concerned that MS might put college out of reach. This year, 639 awards totaling over $1 million were presented nationwide. Applications are evaluated on financial need, academic record, leadership and volunteer activities, a statement of educational and career goals, and letters of recommendation. Applicants are also asked to provide a personal statement describing the impact MS has had on their life. Scholarships range from $1,000 to $3,000 and typically cover one year, although a limited number of awards may exceed this amount.
Spencer Stevens, Jr.
Christian Wright
McKenzie Hoffman
Catherine Yount
For more information about the scholarship program, please visit the website www.nationalmssociety.org.
Scholarship Awardees 2011 Alicia Diaz TOLL FREE NUMBER 1 800 344 4867
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WAYS TO GIVE
DOWN AND DIRTY FOR THE CAUSE
Mud. Lots and lots of mud. In your hair, your eyes, your nose. In front of you dozens of mudcovered people scream and yell. Behind you, more mud-covered people scream and yell. From head to toe, you’re caked in mud—filthy, dirty mud—except when you’re sprayed by the giant water hoses. This is Mud Run MS. It’s a 10K obstacle course through, yep, mud. “You slide down a hill of mud into muddy water, you go through netting into mud, you climb a mountain of mud,” said Sarah Klein, the Society’s national senior event
Photos courtesy of the Minnesota Chapter 4
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manager. It’s dirty beyond belief. And it’s a huge hit. Last year, the event raised nearly one million dollars. The first Mud Run MS debuted in 2009 in Jacksonville, Fla. Hundreds of people showed up, with proceeds exceeding $200,000. Encouraged, the Society is expanding Mud Run MS in partnership with the event creator, The Original Mud Run, across the country. In 2010, events debuted at three more chapters, and this year, eight are already scheduled (Portland, Ore.; Salt Lake City, Utah; Winter Park, Colo.; St. Louis, Mo.; Jacksonville, Fla.; Raleigh/Durham, N.C.; Philadelphia, Pa.; and the Twin Cities in Minn.). More chapters will be joining. The event is not without its organizational challenges. “It can be hard to find the right property. We need somewhere we can dig up huge pits and install semi-permanent concrete structures,” Klein said, not to mention parking for two or three thousand people. But thanks to generous land owners who donated various
WAYS TO GIVE
parcels, the events thus far have all managed to find a place. What kind of person likes getting covered in mud head to toe? According to Klein, this event attracts a broad range of participants, from military, police and fire personnel, to people who just think it’s cool and want to try it. “The idea of splashing in mud for a good cause is very appealing,” she said. “Chapters have been finding that most participants are people new to the Society,” Klein noted. She thinks the spontaneity of the event has something to do with its appeal. “Someone who’s generally fit can just show up and do it.”
But the festive atmosphere of fire trucks, food, sponsor tents and lots of dirty people having loads of fun probably helps, too. To find out more, visit mudrunMS.org.
SAM’S CLUB RAISES NEARLY $1.2 MILLION DOLLARS TO BENEFIT PEOPLE LIVING WITH MS. After six short weeks of fundraising in over 600 clubs across the country, and at the conclusion of an intense MS-themed dodge ball tournament at their annual meeting, Sam’s Club presented a check to the Society for nearly $1.2 million. Making the most of grass roots fundraising techniques that included donation jars, caramel apple and hot chocolate sales, and MS bracelet and sneaker sales in club parking lots, Sam’s Club employees rallied together to make a significant financial contribution to the MS movement. On behalf of the National MS Society and people with MS everywhere—thank you Sam’s Club!
Sam’s Club Dodge Ball Tournament
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NEWS
MEDICARE “IMPROVEMENT STANDARD” CHALLENGED For many people with MS, physical, speech or occupational therapy may be essential in preventing their abilities from deteriorating. However, many of these folks have been denied medically necessary rehabilitation services that they are eligible for through Medicare because of something called the “improvement standard.” The standard actually violates Medicare’s own official regulations, which say that “the restoration potential of a patient is not the deciding factor” for coverage and that therapies that help prevent physical and cognitive deterioration or maintain optimal functioning, even if improvement is not expected, are to be covered. This past January, a classaction lawsuit was filed in the U.S. District Court in Vermont, with the National MS Society as the first national health organization named plaintiff, and subsequently joined by the Alzheimer’s Association, United Cerebral 6
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Palsy, Parkinson’s Action Network and Paralyzed Veterans of America. The lawsuit seeks to assure that a person’s “improvement” status is not a basis for denying ongoing therapy services. The outcome will be reported in “Government News” at www. nationalMSsociety.org/ advocacy.
POTENTIAL ANTI-SPASTICITY TREATMENT BOOSTED BY THE SOCIETY’S FAST FORWARD PROGRAM Key early-stage research on an oral treatment for spasticity, the painful and debilitating muscle spasms associated with MS, is underway at Canbex Therapeutics. The UK-based company received a $2.8 million Translation Award in March, 2011, from the Wellcome Trust, a global charitable foundation, to support this research. The work is being led by David Baker, PhD, an MS investigator under the National MS Society’s Promise: 2010 initiative. The Canbex spasticity program has been supported by the Society’s Fast
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Forward initiative to move this potential therapy toward clinical trial faster.
WELCOME TO DIGITAL MOMENTUM!
Momentum, the National MS Society’s flagship magazine, is now available online at www.nationalMSsociety. org/magazine in a fully digital edition with plenty of bonus features. It includes all content from the print edition, including advertisements, and allows you to click on live hyperlinks, comment on articles and respond to reader comments, download whole issues as PDFs, print pages and share articles via e-mail, links or by posting to social networks. Digital Momentum is also available for free from iTunes and the Android Market. The app includes the magazine, the latest Society news, our Twitter feed and videos.
NEWS
YUCK FACTOR: THE SEQUEL If drinking a glass of worm eggs could help with MS, people might just grimace and swallow. Two recently published studies explore whether infection with relatively harmless parasitic worms, called helminths, can reduce disease activity. The idea stems from the “hygiene hypothesis,” which suggests that an early lack of exposure to infectious agents may cause the immune system to later overreact and trigger MS. In the first phase of a clinical trial (HelminthInduced Immunomodulation Therapy, or HINT) supported by the National MS Society, John Fleming, MD, and colleagues at the University of Wisconsin, Madison, administered a drink containing helminth eggs to five people with recently diagnosed MS. The participants were then monitored with MRI scans. Study results, published in Multiple Sclerosis Journal 2011 Mar 3, showed that participants tolerated the helminth treatment well and neurological symptoms did not get worse. However, the small number of participants and the study design made it difficult to draw firm conclusions about the treatment’s effectiveness. The second phase of this study is now under way. In a previously reported Argentine study, Jorge Correale, MD, and Mauricio Farez, MD, at the Institute for Neurological Research, Buenos Aires, followed the disease course of 12 people with MS who ingested helminth eggs. They showed fewer relapses, better disability scores and lower MRI activity compared with uninfected
people. In a follow-up study published in Journal of Neuroimmunology 2011 Jan 28, the researchers report that in four infected participants who required antiparasitic treatment, MS symptoms and disease-related MRI activity subsequently increased. However, again, because the study was so small, further studies are needed to establish a direct link between parasites and improvements in MS.
UPDATE ON ORAL BG-12 In April, Biogen Idec announced that the experimental oral therapy BG-12 significantly reduced relapses in people with relapsingremitting MS in a phase III trial. The results of another study comparing BG-12 with glatiramer acetate against placebo are expected later this year.
AMERICAN ACADEMY OF NEUROLOGY MEETING The American Academy of Neurology’s annual meeting, held April 9-16 in Honolulu, offered promising results about oral MS medications, treatment of symptoms and better understanding of mechanisms involved in the disease. For example, the first reported results of a phase III trial of oral laquinimod suggested it could significantly reduce disease activity and disability progression, while appearing to be well-tolerated. For more news from the AAN conference, go to www.nationalMSsociety.org/AANews. TOLL FREE NUMBER 1 800 344 4867
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ADVOCACY
MS-CAN ESTABLISHES LEGISLATIVE PRIORITIES FOR SUMMER 2011 The Multiple Sclerosis California Action Network (MS-CAN) is an advocacy coalition formed by the three California chapters of the National MS Society. It coordinates a unified, statewide response to political issues of concern to people living with MS. Members of MS-CAN engage in letter-writing and telephone campaigns, as well as face-to-face meetings with state, local and federal officials. Their grassroots efforts are essential to guarding the rights of people with MS. The commitment of members nationwide makes the National MS Society one of America’s most respected voices on healthcare issues. Remember that you are a constituent and a voter. Every voice counts!
Current Areas of Focus for MS-CAN Currently, MS-CAN is fighting for three key bills that are important to people living with MS and other chronic conditions: Adult Day Health Care (ADHC) AB 96 (Blumenfield – D, Los Angeles) Status: In the Senate. Summary: This bill requires the Department of Health Care Services to establish the Keeping Adults Free from Institutions (KAFI) program for the purposes of transitioning individuals from the ADHC program to a program under a waiver or to any other supportive services, if appropriate. 8 |
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Health Care Coverage: Rate Approval AB 52 (Feuer) – D, Los Angeles) Status: On the Assembly Floor. Summary: AB 52 requires that health plans and insurers obtain approval from state regulators before changing Californians’ health insurance rates. Under this bill, the Department of Managed Health Care (DMHC) and the California Department of Insurance (CDI) would have regulatory authority to approve, deny, or modify excessive rate changes. It also prohibits insurers from proposing rate changes on each product more than once per year. Healing Arts: Telehealth AB 415 (Logue – R, Chico) Status: On the Assembly Floor. Summary: AB 415 allows for coverage of telemedicine visits by Medi-Cal for any service otherwise covered by Medi-Cal. The billing rates and services covered would remain consistent with those applicable at in-person visits.
Where MS-CAN Efforts Have Recently Been Focused In May, over 50 MS activists descended on the California State Capitol to advocate for legislation benefitting people living with multiple sclerosis. The chief objective was to urge legislators to pass two key bills: AB 310 (Fiona Ma—San Francisco) Fair Specialty Drug Pricing and AB-369 (Huffman-San Rafael) Access to Appropriate Pain Medications. AB 310 would ban the practice of co-insurance or the unfair and discriminatory practice of charging between 25% to 35% of the cost
ADVOCACY
of specialty drugs, including many MS therapies, rather than a standard co-payment. The bill also caps out-of-pocket costs within a given year.
Examples of stories include: • difficulty obtaining/keeping health insurance coverage
AB 369 would limit a health plan’s or health insurer’s ability to use step therapy or “fail first” protocols for the treatment of pain. The bill requires that the duration of any step therapy or fail first protocol shall be determined by the prescribing physician and would prohibit a health care service plan or health insurer from requiring that a patient try and fail on more than two pain medications before allowing the patient access to other pain medication prescribed by the physician.
• obtaining affordable heath services and coverage
While AB 310 and AB 369 did not pass out of the Appropriations Committee this year, MS-CAN will continue to push for passage of these bills as they are deemed “two year bills”, meaning that MS-CAN has until January 2012 to get it moved out of the Appropriation Committee.
How You Can Get Involved Every person touched by MS has a different story; whether you are a person with multiple sclerosis, family member, friend or volunteer for the cause, every story counts. Personal stories are a powerful message that MS Activists use when advocating for issues that are important to people living with MS. The Northern California Chapter is gathering personal stories from people living with MS and their families. These stories can be used for advocacy, legislation, marketing and more.
• accessing durable medical equipment • prescription drug cost increases • overcoming personal hardships • personal successes Please contact Stewart Ferry, Public Policy Director, to submit your personal story or become an MS Activist in your local and statewide communities.
EMPLOYMENT CORNER Our signature employment program, Career Crossroads: Employment and MS, has been revised and is available as part of the Society’s online learning opportunities. The Participant Self-Study workbook and video program are available on the National MS Society’s website (www.nationalMSSsociety.org/ employment). Click on Staying in the Game. Also, if you want to go further in your career exploration; the Quintesenntial Careers website offers a review of online assessment tools that support research for career options. Visit www.quintcareers.com. Don’t miss this summer’s 5 part tele-series on employment and benefits beginning July 13! Visit our online calendar at www.nationalMSsociety.org/can.
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BIKE MS: WAVES TO
ter Regis ith yw toda t code un disco NECTION ON e MSC eceiv r d n a off! $20
ONE UNFORGETTABLE RIDE. AN UNBEATABLE DESTINATION. A WORLD FREE OF MS. September 17 &18, 2011 San Francisco to Sonoma County 40-150 mile route options www.wavestowine.org Bike MS: Waves to Wine Ride takes you on an unforgettable, two-day journey through San Francisco, Marin, and Sonoma Counties. All you need is your bike and your gear, and we’ll take care of the rest. As many as 2,000 riders cruise along scenic point-to-point courses ranging from 40 to 175 miles. There are stocked rest stops approximately every 12-15 miles, six full meals, generous amenities, stunning landscapes, and spirited festivities that include live music and a beer garden.
O WINE RIDE 2011
How Can You Get Involved? Register as a cyclist. Form a team, join a team, or ride as an individual. Volunteer. It takes a community of volunteers to make Bike MS: Waves to Wine happen. There are plenty of opportunities, so encourage your network to get involved today and register to volunteer! We can accommodate corporate volunteer teams of up to 50—get your next team-building experience on the calendar and make a difference in the lives of people living with MS. Help us promote Waves to Wine in your community. We can send you marketing materials to distribute to your local bike shops, coffee houses, dry cleaners, and so on. Make a donation to a cyclist or the National MS Society. Learn more by visiting www.wavestowine.org.
MONEY MATTERS
TEN TIPS FOR HIRING HOME HELP BY AL TAINSKY
3. Have him or her agree to give one month’s notice—and do the same. 4. Don’t hire an alcoholic. (I expect my caregivers to be clean and sober in my home.) 5. Keep food separate. (Sometimes we eat together, sometimes we don’t.) 6. The caregiver’s room should hold all the caregiver’s goods. (I have no room for storage and nothing should hinder my movement in my home.) 7. No sleepovers and no inviting friends over without permission. (I need night coverage and that is non-negotiable.)
Respect, honesty, compassion, compatibility and civility are core ingredients of a successful caregiving relationship. But a sense of humor and a soupçon of soul don’t hurt either. I was diagnosed with MS in 1987, but I trace the disease back to the 1950s and a summer so hot it melted the tar on Anderson Avenue in the Highbridge section of the Bronx. For nigh on 20 years, I have hired, fired and lived with caregivers. I call my current live-in caregiver Mr. Wizard. His technical and computer skills are remarkable. He has a sense of humor and he taught Sunday school for about 14 years. His younger sister is developmentally disabled and the love he feels for her shows a man of substance. Here are a few of my tips to finding your own Mr. Wizard. 1. Have applicants supply the names, addresses and phone numbers of three personal or work references. 2. Hire someone with a clean driving record. 12 |
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8. Keep your computer and printer for your personal use only. 9. If a caregiver steals, lies or cheats, make a plan for coverage before firing the miscreant, so you’re not left on your own. 10. Don’t surrender control of your life to anyone. Need help? Call a friend, call a relative, call the Society, call the closest Independent Living Center and if necessary call the police. Al Tainsky was a professional journalist and sometime writer of comedy for television when he was diagnosed with MS 24 years ago. He continued to live independently and to write articles for Momentum magazine, Real Living with MS, and other disability publications. He died of a heart attack in February shortly after completing this article. We will miss his smarts and his spirit.
Wondering how to afford a caregiver? Call 1-800-344-4867 to talk to an MS Navigator®. Also go to nationalMSsociety.org for the brochure, “Hiring Help at Home.”
NEWLY DIAGNOSED
THE BENEFITS OF DENIAL
“Hopelessness is destructive—it reduces motivation, and makes us less likely to adhere to treatment,” he said. “I encourage people to let go of the worst-case scenario and continue to live life, go to work, enjoy relationships and take some time to get used to having MS. Loved ones can help by giving their diagnosed friend or family member permission to deny and therefore cope.”
Denial is not a river in Egypt. And it actually has a place in helping people absorb a diagnosis of MS.
Denial allows people to take time to get used to a new situation and not focus on fears of what might happen down the road. “Denial gets a bad rap,” said David Rintell, EdD, a psychologist at Partners MS Center at the Brigham and Women’s Hospital in Boston, Mass., “but it can be very useful and is sometimes necessary.” Denial is a very basic defense mechanism, explained Barbara Giesser, MD, clinical director of the UCLA MS Program. “In the process of adapting to chronic illness, denial can be a useful first step in the process of acceptance.” In fact, said Dr. Rintell, people who are unable to use denial may become disabled by anxiety.
However, said Dr. Giesser, denial doesn’t work long-term. “You have to move past denial in order to treat and make plans,” she cautioned. “If instead of accepting your diagnosis, you believe the doctors made a mistake, you might not avail yourself of appropriate therapy for both disease and symptom management.” To develop a sensible perspective, it’s important to get as much information as possible. “Find a neurologist you can work with, who allows you to be active in your own care,” Dr. Giesser advised. “It’s less scary when you feel empowered.” Dr. Rintell also suggested speaking with other people with MS or a professional with relevant experience. “After the initial shock, most people learn that MS can be a difficult illness, but they realize that they will be OK with it. Being optimistic turns out to be realistic.”
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WALK MS
WALK MS: NORTHERN CALIFORNIA 2011 Walk MS: Northern California 2011 was a huge success! Thank you for joining together with others in your community that care about people living with MS. The sea of orange we created as we walked throughout Northern California brought awareness and support to the 12,000 people living with MS in Northern California. The $1.34 million you raised at Walk MS fuels cutting edge research, drives change through advocacy, facilitates professional education and provides programs and services designed to help people living with MS and their families move their lives forward. Thank you for celebrating hope for a world free of MS.
THANK YOU TO OUR SPONSORS!
Thank you to our media sponsors, Clear Channel San Francisco, Modesto and the following stations in Sacramento:
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WALK MS
THANK YOU TO THE TOP 100 WALKERS OF 2011! 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 32 33 34 35 36 37 38 39 40 41 42 43 44 45 46 47 48 49 50
Janine Perry Ann Diana Mindy Steve Linda Matthew Navid Bryce Steve Diana Brian Shauna Matthew Lorri Pauline Eileen Sarah Ruth Helen Diane Janice John Lanier Allison Melody Heather P Doug Krystle Jon Susan Gretchen Abbe Jennifer Sharon Rachel Janet Lorraine Dana John Natalie Lisa Kim Julie Eli Shannon Kathy Judie Vicki Kristine
Vanier Jeveli Keith Zuckerman Apperson Pfeiffer Frinzi Mansourian Davidson Schlosser Opela-Postma Garber Silva Zises Peterson Stavaris Paul Smith Yoder Schultz Dodd Ertola Kirkorian Coles Petsod-Hixon Onwiler Fargo Richardson Reneer Landa McCarty Kimmel Funk Dellegrazie Desoto Matalon Warren Hitchcock Kellner Lane Gebhart VanDerlofske Kramer Davies Morowitz Griswold Finney Block Mastbaum Demafeliz
$ $ $ $ $ $ $ $ $ $ $ $ $ $ $ $ $ $ $ $ $ $ $ $ $ $ $ $ $ $ $ $ $ $ $ $ $ $ $ $ $ $ $ $ $ $ $ $ $ $
50,500.00 32,385.00 29,474.00 11,550.00 10,250.00 8,703.00 7,750.00 6,200.00 5,950.45 5,508.40 5,420.00 5,400.00 5,370.00 5,328.00 5,210.64 5,172.00 5,000.00 4,643.00 4,640.00 4,435.00 4,175.00 4,105.00 4,000.00 3,950.00 3,940.00 3,855.00 3,830.00 3,740.00 3,725.00 3,665.00 3,535.00 3,500.00 3,355.00 3,327.00 3,275.00 3,248.00 3,195.00 3,130.00 3,050.00 3,049.00 2,940.00 2,870.00 2,853.37 2,775.00 2,760.00 2,727.00 2,725.00 2,694.00 2,681.00 2,605.00
51 52 53 54 55 56 57 58 59 60 61 62 63 64 65 66 67 68 69 70 71 72 73 74 75 76 77 78 79 80 81 82 83 84 85 86 87 88 89 90 91 92 93 94 95 96 97 98 99 100
Carolyn Katie Taylor Jaime Sarah Jamie Valerie Sarah Natalie John Rick Rebecca Dana Casey Benjamin Khryste Spencer Carolyn Gregory Nicole Leslie Melody Sara Sheryl Arezou Donna Avi Amber Judith Karin Lilia Roberta Tukey Danell Felicia Steve Ariana Danielle Patricia Kimberly Susan Orazio Jennifer Laurie Cheryl Suedy Jessie Stephen Aileen Denise
Meehan Woodruff Laumann Kemmer Pollak Humphreys Rosado Janus Darone Mattos Schultz Olson Utz McCormick Shyman Warden-Ranghiasci Ames Dicks Paull Mueller Borges Baugh Warden Turner Mansourian Hayes Burk Turner Hejza Salameh Rosenheimer Allen Seagraves Petrovia Glover Mendez Guerra English Brandeburg Loiler Kates Gallo Belton Steckel Choi Ezzatyar Raines Houlihan Dones Brown
$ 2,585.00 $ 2,527.00 $ 2,515.00 $ 2,500.00 $ 2,485.00 $ 2,485.00 $ 2,475.00 $ 2,425.00 $ 2,405.00 $ 2,375.00 $ 2,305.00 $ 2,300.00 $ 2,280.00 $ 2,195.00 $ 2,195.00 $ 2,185.00 $ 2,174.00 $ 2,160.00 $ 2,140.00 $ 2,105.00 $ 2,100.00 $ 2,095.00 $ 2,080.00 $ 2,040.00 $ 2,040.00 $ 2,037.00 $ 2,016.00 $ 2,005.00 $ 1,990.00 $ 1,982.00 $ 1,965.00 $ 1,965.00 $ 1,935.00 $ 1,930.15 $ 1,930.00 $ 1,865.00 $ 1,865.00 $ 1,778.00 $ 1,775.00 $ 1,755.00 $ 1,755.00 $ 1,746.00 $ 1,733.00 $ 1,721.00 $ 1,710.00 $ 1,697.00 $ 1,635.00 $ 1,630.00 $ 1,610.00 $ 1,605.00
Top fundraisers as of the fundraising deadline, May 27, 2011.
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LIVING WITH MS
Wii AND ME BY JONATHAN RUBIN
more rough tackling and big kicks downfield. Then, back in the good ol’ U.S. of A., I played youth and varsity high school soccer. I was not great, but always good, always in the game, ready to play, an able teammate. While at the University of California at Santa Cruz, I frequently played with members of the Banana Slugs Division III, but never went out for the team — I think due to a youthful desire to be more intellectual, less jock.
Eighteen years ago, when I was 24, I lost something very important. I lost the ability to compete. I had played competitive sports my entire life. So much so I never thought what life would be without them. They were just part of me. But my competitive ability was taken away by my first major MS attack, one that left me dizzy, weak and bedridden (temporarily) for the first time in my life.
I played on every intramural team, in every league, in every pickup game, whenever I had the opportunity to join, and would spend hours and hours just running around an immense field overlooking the Pacific Ocean chasing and kicking a small white ball. It was pure freedom. It wasn’t until the winter of ’92–’93 that I realized just how important it was to me.
After my first MS attack, it took me five months to get back on a basketball court and a year to even kick a soccer ball (my legs were heavily affected). It was probably 18 months before a friend talked me into Soccer was my primary My competitive ability trying a pickup soccer game. I was a little slower, a little passion, with tennis and was taken away by my shakier, a little weaker, but hockey following close first major MS attack, it was soccer, by golly, and behind. I was taught the “beautiful sport” of soccer one that left me dizzy and I loved it. However, after many ups and downs and all first by Africans who lived weak. arounds, my MS has shifted in our apartment complex into secondary-progressive. I now walk with in Madison, Wis., when I was six. Then, when a cane and can only imagine playing in an my family moved to England for three years, actual soccer match. I learned another version, English football, which involves less intricate passing and
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LIVING WITH MS
Tennis is a similar story. It was an early casualty of MS. Running made me dizzy and confused, neither of which is conducive to playing quality tennis. It is difficult for me to even break a sweat these days, let alone get a true aerobic workout. The muscles in my legs quit after two minutes of stationary bike riding and after 10 on a rowing machine. If I work out for 15 minutes, it becomes next to impossible for me to walk out of the gym. I enjoy yoga, but my muscles buckle with any pose that involves the legs.
My experience reminds me of the scene in the movie Avatar where the wounded Which brings me to the present, to this veteran, who has lost the use of Christmas actually, when my Thanks to Wii, I can his legs, has his mind put into family and I (my two sons the body of an avatar. He walks play golf, and I am a few trembling steps, and then are jocks too — go figure) bought the Wii Fit Plus game once again a champion starts running and running and station from Nintendo. running. He will not stop. It is tennis player. impossible to imagine what it is Thanks to Wii, I can play golf, like to not be able to run until you can’t. and I am once again a champion (level 2000) tennis player. I can groundstroke endlessly, I haven’t yet tried soccer and basketball on connect on every overhead slam and whip the Wii and I’m not sure that Nintendo can forehand winners crosscourt. I can serve capture the joy of those sports quite as well big, rush the net, and still backpedal to the as they did with tennis. But I’m ready to start baseline. I can sweat like a pig again. I am, in the PGA tour with Woods and Mickelson. a sense, complete. Who wants to caddy?
Affording Wii One of Wii’s drawbacks is that it’s not cheap. It usually retails for $250 and up, depending on model, accessories and games, although with a little Internet research, you may uncover lower prices. Or call us to see if any communal Wii events, such as bowling tournaments, or classes on using a Wii, are coming up in the area.
Jonathan Rubin, who lives in Madison, Wis., is currently ranked 5,024 in the world on Wii Grand Slam Tennis and hopes to be #1 by spring.
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CHALLENGE WALK
TEAM NORCAL STREETWALKERS CELEBRATING 10 YEARS OF CHALLENGE WALK MS
RESEARCH
2004: How We Became a Team
people living with MS themselves—one of whom, Patricia Kennedy, completed last year’s walk with the use of a walker the entire way. “Unstoppable” is not just a word for our team, it’s our code. In 2011 we’ll have five team members participating in their 10th consecutive Challenge Walk. Half of the team has five or more walks under their feet.
The Northern California Chapter of the National Where We Come From MS Society called a meeting in 2003. They told us the 3 day/50 mile Challenge Walk, which Historically we’ve come from all over Northern we had all participated in the previous three California. Modesto, years, would not take Red Bluff, Auburn, San place the following Francisco, Emeryville, year (at least not in Half Moon Bay, Northern California). Redwood City, Tracy, It had been ‘removed Milpitas, San Jose and from the calendar beyond. In 2011, we of events.’ We were are joining forces with deeply saddened by Team Good Carma this news. Removed? based out of Riverside. Now what? This Thus making the 3-day 50-mile NorCal StreetWalkers adventure to end w/ Good Carma MS was not just any the first statewide event, it had become a Challenge Walk MS NorCal StreetWalkers with Good Carma join special part of so many of us. team in California. guest David Osmond So they suggested we take a team down to Southern Like Family California and participate there. It only took us minutes to decide. Game on. And with that, the Not the kind of family that comes to visit and ‘NorCal StreetWalkers’ were born. overstays their welcome. Nope, not THIS team. This team is the kind of family that you look Who Are We? forward to seeing at family reunions. The kind The team usually averages 15 walkers each of family you actually want to spend time with. year, ranging in age from 17-70. In addition The kind of family that pushes you to do the to the walkers, a handful of Crew Members seemingly impossible, reminding you every step and volunteers make the trip south as well. of the way that each one of us is responsible for Approximately half the team is made up of the movement to end MS. 18
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JOIN THE MOVEMENT: nationalMSsociety.org
CHALLENGE WALK
What We’ve Done Since the formation of the team in 2004, we’ve consistently achieved top 3 fundraising team status, approximately $450,000 in 7 years, walked tens of thousands of miles and made entire communities more aware of what MS is and what they can do about it. How We Do It
keep us as empowered and as well as possible. Challenge Walk transforms every life it touches - dealing a powerful blow to this unpredictable disease. All of that and the gorgeous San Diego coastline full of surfers, dolphins, kayakers, fabulously supportive San Diegans who cheer us on and so much fun and silliness along the way. The route is fully-supported with rest stops every 1-3 miles and participants even enjoy relaxing accommodations at the Del Mar Marriott each night with catered meals, massage, live entertainment and a huge community celebration at mile 50.
The minimum fundraising amount needed to participate is $2500 per walker. So we like to get creative. There are too many ways to count how we go about getting it done And This Is Where but here is one of the YOU Come In… team’s favorite stories. In 2007 Team Captain, Become a NorCal Colleen Brown (aka: Street Walker and you Bambi) challenged the will instantly have team to a fundraising Good Carma! There goal. Four weeks prior are many ways to to the event, it looked participate. Volunteer as though the team in a supporting role or NorCal StreetWalkers ready to rock at would come up short even as crew for the Challenge Walk MS 2010 of their $50,000 fundraising entire event. Contribute goal. So Bambi made a promise. She told the financially in any amount because every dollar team that if they hit their goal, she would let makes a difference. Go to them shave her head. $69,000 later, in front of www.myMSchallenge.com and look for 400 other walkers and supporters, the team Team NorCal StreetWalkers w/ Good Carma. shaved her head to the shock and surprise of Challenge Walk MS Southern California is everyone in the room! That’s how we do it. aiming to raise $1.7 million in 2011, making our grand total $10 million in 10 years. Be a part of Why We Keep Doing It? it—JOIN US. This is the simple part: to create a world free of To learn more about Challenge Walk MS, please MS and until we have a cure, to create a world visit www.myMSchallenge.com. where people living with MS have access to programs, services and events like this one to TOLL FREE NUMBER 1 800 344 4867
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Northern California Chapter 1700 Owens Street, Suite 190 San Francisco, CA 94158