MS Connection Summer 2011

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 helps students affected by multiple sclerosis pursue a college or technical school education. It is open to high school seniors who live with MS or have a parent living with MS; or anyone living with MS who has not yet been to a post-secondary school.

In addition to the emotional toll, MS can have a substantial financial impact on a family. The direct and indirect costs of MS, including lost wages — even for those with health insurance — are estimated at more than $69,000 annually, or $2.2 million over a lifetime. This makes funding a college education that much harder.

In 2011, $12,000 in scholarship funds was distributed to five students in the Northern California Chapter territory. This year’s recipients are:

Spencer Stevens plans to get his bachelor’s degree in liberal arts, continue on to law school and eventually become a civil rights attorney

where he wants to fight for people’s rights. Spencer is from Berkeley.

Christian Wright plans to attain a bachelor’s degree in business marketing at William Jessup

University. Christian is a competitor on the US Mountain Biking Team and holds many wins and medals, including both a National Silver and Gold Medal. Christian is from Auburn.

Catherine Yount plans to study film production and screenwriting at

University of California, Los Angeles. She hopes to one day apply her experiences and knowledge to her screenplays and bring greater understanding to the world. Catherine is from Rocklin.

Alicia Diaz will attend University of California, Irvine where she will obtain her bachelor’s degree in history. She is very passionate about education with hopes to become a high school History teacher. She plans to attain her teaching credential and eventually earn a Ph.D. Alicia is from San Jose.

“Regardless of the situation at

hand, if we can be positive, learn and grow and try to help others while in the process, this world

would be a much happier place.” - Christian Wright,

2011 Scholarship Awardee

MS CONNECTION SUMMER 2011

National MS SocietyNorthern 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

BOARD OF TRUSTEESBoard OfficersThomas M. Galizia, Chair Deloitte ConsultingAngela E. Lai, Secretary Wells Fargo Private Client ServicesDavid Larson, Treasurer Piedmont Grocery

Board MembersLaura Black, Audit Chair Needham & CompanyKatherine Bock Lazard Frères & Co., LLCNancy Byl, Ph.D.

UCSF Physical Therapy and Rehabilitation Science

Jonah Chan, Ph.D. UCSF Department of NeurologyC. Budd Colby, Ph.D. Colby Biomedical ConsultantsElizabeth Crabtree-Hartman, MD UCSF MS Center, Department of NeurologyAnthony DeLizza, Program Co-Chair First Light, LLCMichelle Dennedy OracleMatt Frinzi Powervision, Inc.Douglas S. Goodin, MD UCSF MS CenterDavid R. Hultman Bank of the WestH. Penny Knuff Fiduciary Trust International of CaliforniaDoug Richardson, Program ChairChuck Robbins

Cisco SystemsJohn A. Schafer, MD Mercy Medical GroupDan Stokes

JStokes & Associates

Emeritus Board MembersDavid KornFillmore MarksGary Ryness The Ryness Company

2 | JOIN THE MOVEMENT: nationalMSsociety.org

TOLL FREE NUMBER 1 800 344 4867 | 3

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 CountryThe 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.

For more information about the scholarship program, please visit the website www.nationalmssociety.org.

Spencer Stevens, Jr. McKenzie Hoffman

Christian Wright Catherine Yount

Alicia Diaz

Scholarship Awardees

2011


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 mud-covered 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

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

Photos courtesy of the Minnesota Chapter


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


NEWS

MEDICARE “IMPROVEMENT STANDARD” CHALLENGEDFor 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 class- action 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

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 PROGRAMKey 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

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 (Helminth-Induced 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 Neuro-immunology 2011 Jan 28, the researchers report that in four infected participants who required anti-parasitic 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-12In April, Biogen Idec announced that the experimental oral therapy BG-12 significantly reduced relapses in people with relapsing-remitting 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 MEETINGThe 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.

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.

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.

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.

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.

Examples of stories include:

• difficulty obtaining/keeping health insurance coverage

• obtaining affordable heath services and coverage

• 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 state-wide communities.

EMPLOYMENT CORNEROur 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.


BIKE MS: WAVES TO WINE RIDE 2011

ONE UNFORGETTABLE RIDE. AN UNBEATABLE DESTINATION.

A WORLD FREE OF MS.

September 17 &18, 2011San Francisco to Sonoma County

40-150 mile route optionswww.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.

Register

today with

discount code

MSCONNECTION

and receive

$20 off!

BIKE MS: WAVES TO 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.


TEN TIPS FOR HIRING HOME HELP BY AL TAINSKY

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.

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.)

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.

MONEY MATTERS

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.”

TOLL FREE NUMBER 1 800 344 4867 | 13

NEWLY DIAGNOSED

THE BENEFITS OF DENIAL

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.

“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.”

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.”

Denial is not a river in Egypt. And it actually has a place in helping

people absorb a diagnosis of MS.

THANK YOU TO OUR SPONSORS!

WALK MS: NORTHERN CALIFORNIA 2011Walk 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 media sponsors, Clear Channel San Francisco, Modesto and the following stations in Sacramento:

WALK MS


WALK MS

TOLL FREE NUMBER 1 800 344 4867 | 15

THANK YOU TO THE TOP 100 WALKERS OF 2011!1 Janine Vanier 50,500.00$ 51 Carolyn Meehan 2,585.00$2 Perry Ann Jeveli 32,385.00$ 52 Katie Woodruff 2,527.00$3 Diana Keith 29,474.00$ 53 Taylor Laumann 2,515.00$4 Mindy Zuckerman 11,550.00$ 54 Jaime Kemmer 2,500.00$5 Steve Apperson 10,250.00$ 55 Sarah Pollak 2,485.00$6 Linda Pfeiffer 8,703.00$ 56 Jamie Humphreys 2,485.00$7 Matthew Frinzi 7,750.00$ 57 Valerie Rosado 2,475.00$8 Navid Mansourian 6,200.00$ 58 Sarah Janus 2,425.00$9 Bryce Davidson 5,950.45$ 59 Natalie Darone 2,405.00$

10 Steve Schlosser 5,508.40$ 60 John Mattos 2,375.00$11 Diana Opela-Postma 5,420.00$ 61 Rick Schultz 2,305.00$12 Brian Garber 5,400.00$ 62 Rebecca Olson 2,300.00$13 Shauna Silva 5,370.00$ 63 Dana Utz 2,280.00$14 Matthew Zises 5,328.00$ 64 Casey McCormick 2,195.00$15 Lorri Peterson 5,210.64$ 65 Benjamin Shyman 2,195.00$16 Pauline Stavaris 5,172.00$ 66 Khryste Warden-Ranghiasci 2,185.00$17 Eileen Paul 5,000.00$ 67 Spencer Ames 2,174.00$18 Sarah Smith 4,643.00$ 68 Carolyn Dicks 2,160.00$19 Ruth Yoder 4,640.00$ 69 Gregory Paull 2,140.00$20 Helen Schultz 4,435.00$ 70 Nicole Mueller 2,105.00$21 Diane Dodd 4,175.00$ 71 Leslie Borges 2,100.00$22 Janice Ertola 4,105.00$ 72 Melody Baugh 2,095.00$23 John Kirkorian 4,000.00$ 73 Sara Warden 2,080.00$24 Lanier Coles 3,950.00$ 74 Sheryl Turner 2,040.00$25 Allison Petsod-Hixon 3,940.00$ 75 Arezou Mansourian 2,040.00$26 Melody Onwiler 3,855.00$ 76 Donna Hayes 2,037.00$27 Heather Fargo 3,830.00$ 77 Avi Burk 2,016.00$28 P Doug Richardson 3,740.00$ 78 Amber Turner 2,005.00$29 Krystle Reneer 3,725.00$ 79 Judith Hejza 1,990.00$30 Jon Landa 3,665.00$ 80 Karin Salameh 1,982.00$31 Susan McCarty 3,535.00$ 81 Lilia Rosenheimer 1,965.00$32 Gretchen Kimmel 3,500.00$ 82 Roberta Allen 1,965.00$33 Abbe Funk 3,355.00$ 83 Tukey Seagraves 1,935.00$34 Jennifer Dellegrazie 3,327.00$ 84 Danell Petrovia 1,930.15$35 Sharon Desoto 3,275.00$ 85 Felicia Glover 1,930.00$36 Rachel Matalon 3,248.00$ 86 Steve Mendez 1,865.00$37 Janet Warren 3,195.00$ 87 Ariana Guerra 1,865.00$38 Lorraine Hitchcock 3,130.00$ 88 Danielle English 1,778.00$39 Dana Kellner 3,050.00$ 89 Patricia Brandeburg 1,775.00$40 John Lane 3,049.00$ 90 Kimberly Loiler 1,755.00$41 Natalie Gebhart 2,940.00$ 91 Susan Kates 1,755.00$42 Lisa VanDerlofske 2,870.00$ 92 Orazio Gallo 1,746.00$43 Kim Kramer 2,853.37$ 93 Jennifer Belton 1,733.00$44 Julie Davies 2,775.00$ 94 Laurie Steckel 1,721.00$45 Eli Morowitz 2,760.00$ 95 Cheryl Choi 1,710.00$46 Shannon Griswold 2,727.00$ 96 Suedy Ezzatyar 1,697.00$47 Kathy Finney 2,725.00$ 97 Jessie Raines 1,635.00$48 Judie Block 2,694.00$ 98 Stephen Houlihan 1,630.00$49 Vicki Mastbaum 2,681.00$ 99 Aileen Dones 1,610.00$50 Kristine Demafeliz 2,605.00$ 100 Denise Brown 1,605.00$

Top fundraisers as of the fundraising deadline, May 27, 2011.

Wii AND MEBY JONATHAN RUBIN

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.

Soccer was my primary passion, with tennis and hockey following close behind. I was taught the “beautiful sport” of soccer first by Africans who lived in our apartment complex in Madison, Wis., when I was six. Then, when my family moved to England for three years, I learned another version, English football, which involves less intricate passing and

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.

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

trying a pickup soccer game. I was a little slower, a little shakier, a little weaker, but it was soccer, by golly, and I loved it. However, after many ups and downs and all arounds, my MS has shifted

into secondary-progressive. I now walk with a cane and can only imagine playing in an actual soccer match.

LIVING WITH MS

My competitive ability was taken away by my first major MS attack,

one that left me dizzy and weak.


TOLL FREE NUMBER 1 800 344 4867 | 17

Affording WiiOne 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.

Thanks to Wii, I can play golf, and I am

once again a champion tennis player.

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.

Which brings me to the present, to this Christmas actually, when my family and I (my two sons are jocks too — go figure) bought the Wii Fit Plus game station from Nintendo.

Thanks to Wii, I can play golf, and I am once again a champion (level 2000) tennis player. I can groundstroke endlessly, connect on every overhead slam and whip forehand winners crosscourt. I can serve big, rush the net, and still backpedal to the baseline. I can sweat like a pig again. I am, in a sense, complete.

My experience reminds me of the scene in the movie Avatar where the wounded

veteran, who has lost the use of his legs, has his mind put into the body of an avatar. He walks a few trembling steps, and then starts running and running and running. He will not stop. It is impossible to imagine what it is

like to not be able to run until you can’t.

I haven’t yet tried soccer and basketball on the Wii and I’m not sure that Nintendo can capture the joy of those sports quite as well as they did with tennis. But I’m ready to start the PGA tour with Woods and Mickelson. Who wants to caddy?

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.

LIVING WITH MS

RESEARCH


CHALLENGE WALK

TEAM NORCAL STREETWALKERSCELEBRATING 10 YEARS OF CHALLENGE WALK MS

2004: How We Became a Team

The Northern California Chapter of the National MS Society called a meeting in 2003. They told us the 3 day/50 mile Challenge Walk, which we had all participated in the previous three years, would not take place the following year (at least not in Northern California). It had been ‘removed from the calendar of events.’ We were deeply saddened by this news. Removed? Now what? This 3-day 50-mile adventure to end MS was not just any event, it had become a part of so many of us. So they suggested we take a team down to Southern California and participate there. It only took us minutes to decide. Game on. And with that, the ‘NorCal StreetWalkers’ were born.

Who Are We?

The team usually averages 15 walkers each year, ranging in age from 17-70. In addition to the walkers, a handful of Crew Members and volunteers make the trip south as well. Approximately half the team is made up of

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.

Where We Come From

Historically we’ve come from all over Northern California. Modesto, Red Bluff, Auburn, San Francisco, Emeryville, Half Moon Bay, Redwood City, Tracy, Milpitas, San Jose and beyond. In 2011, we are joining forces with Team Good Carma based out of Riverside. Thus making the NorCal StreetWalkers w/ Good Carma the first statewide Challenge Walk MS

team in California.

Like Family

Not the kind of family that comes to visit and overstays their welcome. Nope, not THIS team. This team is the kind of family that you look forward to seeing at family reunions. The kind of family you actually want to spend time with. The kind of family that pushes you to do the seemingly impossible, reminding you every step of the way that each one of us is responsible for the movement to end MS.

NorCal StreetWalkers with Good Carma join special guest David Osmond

TOLL FREE NUMBER 1 800 344 4867 | 19

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

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 but here is one of the team’s favorite stories. In 2007 Team Captain, Colleen Brown (aka: Bambi) challenged the team to a fundraising goal. Four weeks prior to the event, it looked as though the team would come up short of their $50,000 fundraising goal. So Bambi made a promise. She told the team that if they hit their goal, she would let them shave her head. $69,000 later, in front of 400 other walkers and supporters, the team shaved her head to the shock and surprise of everyone in the room! That’s how we do it.

Why We Keep Doing It?

This is the simple part: to create a world free of MS and until we have a cure, to create a world where people living with MS have access to programs, services and events like this one to

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.

And This Is Where YOU Come In…

Become a NorCal Street Walker and you will instantly have Good Carma! There are many ways to participate. Volunteer in a supporting role or even as crew for the

entire event. Contribute financially in any amount because every dollar makes a difference. Go to www.myMSchallenge.com and look for Team NorCal StreetWalkers w/ Good Carma. Challenge Walk MS Southern California is aiming to raise $1.7 million in 2011, making our grand total $10 million in 10 years. Be a part of it—JOIN US.

To learn more about Challenge Walk MS, please visit www.myMSchallenge.com.

NorCal StreetWalkers ready to rock at Challenge Walk MS 2010

Northern California Chapter1700 Owens Street, Suite 190San Francisco, CA 94158

NON-PROFITORGANIZATION

U.S. POSTAGEPAID

San Francisco, CAPermit #160

Documents

MS Connection Summer 2011