MS Connection Fall 2009

NORTHERN CALIFORNIA CHAPTER

Moving toward a worLd free of MS

where we Stand in reSearCh: ChaLLengeS & oPPortunitieS

BY JOHN R. RICHERT, MD

There has never been a more exciting time in MS research than now. How are we planning to maintain critical discovery in such a challenging economic environment?

First, we are moving ahead. This year alone, we’re providing over $33.5 million to support 345 new and ongoing projects in our core research portfolio, plus $1.5 million for Fast Forward, our On August 4th, members of the Golden Circle (see article on page 15) welcomed Dr. John Richert to share his insight into promising research in the field of MS. Dr. Richert is the Executive Vice President for Research and Clinical Programs for the National Multiple Sclerosis Society headquartered in New York City. Much of what he shared with attendees is summarized in this recent article.

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uSe your PaSSion to end MS This past quarter, we have seen many innovative Community Events sponsored by Northern Californians who want to find a cure for MS. We’re very grateful to those who have “Joined the Movement” and created community events and fundraising activities. The creativity and innovation of our fundraisers is inspiring. Here are just a few of the recent events held by our supporters.

Stand againSt MS On the last weekend in August, 12-year-old Aaron Solomon held a lemonade stand in his home town of San Mateo to raise money and awareness for multiple sclerosis. Aaron’s shared his inspiration in a letter he sent to all his friends and family marketing the event:

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inSide THIS ISSUE

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RESEARCH PAGE 8

FALL 2009

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PROGRAMS PAGE 18

MS Connection FALL 2009 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 • David Hartman 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 Hartman, Chapter President National Multiple Sclerosis Society Board Members Laura Black, Audit Chair Needham & Company C. Budd Colby Colby Biomedical Consultants Elizabeth Crabtree-Hartman, MD UCSF MS Center, Department of Neurology Anthony DeLizza, Program Co-Chair First Light, LLC Michelle Dennedy Sun Microsystems, Inc Matt Frinzi Powervision, Inc. Douglas S. Goodin, MD UCSF MS Center David R. Hultman Davidson Investment Advisors H. Penny Knuff Fiduciary Trust International of California David Larson, Governance Chair Piedmont Grocery David Mauldin Doug Richardson, Program Chair John A. Schafer, MD Mercy Medical Group John N. Staples, III Evanston Partners Dan Stokes JStokes & Associates Emeritus Board Members Warren Berl David Korn Fillmore Marks Gary Ryness The Ryness Company

As the holiday season approaches, we here at the Northern California Chapter have much to be thankful for. I’d like to take this opportunity to express my appreciation and share with you some of the things for which I am most grateful.

We are the beneficiaries of superstar talent, countless hours, boundless energy, dedicated effort and goodwill given to us by our outstanding volunteers. We are deeply grateful for these devoted supporters who have given so much of their time and talent this past year.

As you’ll read on page 4, our MS advocates have helped get three bills signed into law that will improve the lives of those living with MS in California. We will recognize many of our dedicated volunteers at our upcoming Annual Meeting on December 3rd in Pleasant Hill (visit www.msconnection.org for more details) including Tammy Pilisuk, Chair of the Chapter’s Government Relations Committee, who was recently inducted into the National MS Society’s Volunteer Hall of Fame.

Despite the worst economic environment since the Great Depression, our fundraisers and donors continued to support the MS Society.

I’m thrilled to report that our Bike MS Waves to Wine Ride achieved its most successful year, with more participants raising more funds than ever before in its 26 year history (see page 10). We’ve also launched the Golden Circle, our premier recognition program to acknowledge the investment of our highest level donors.

Through this annual gifts appeal, our friends and partners are helping us meet the needs

of people and families affected by MS in our community, and fund critical research at a time when support is most needed. In its inaugural year, we’ve already welcomed many new members into the Golden Circle and we are looking forward to welcoming many more (see page 15).

The Chapter continues to serve people with MS as we endeavor to empower them to live independently, enhance their health and improve their knowledge about MS. Our staff and volunteers are providing vital services and programs for our clients to help them address the broad range of issues faced by people with MS. A sampling of recent programs include our monthly Newly Diagnosed Orientation, Diet and MS Nutrition Teleconference, Couples Workshops, symptom management programs on varied issues, community-based adaptive exercise classes, a book club and social outings such as our annual River Rafting outing on the American River. We also sponsored Home Smart Home, the first regional event to help people living with disabilities and baby boomers learn how to make accessibility accommodations and plan for “aging in place” (see page 18).

The National MS Society continues to be a driving force in MS research. Society funded research aimed at finding cause, cure and better treatments has seen much progress this year with oral therapies and other amazing breakthroughs in the works (see page 5).

Northern California is a hub of MS research Continued on Page 19

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PRESIDENT’S UPDATE

PreSident’S uPdate: finding MuCh to Be thankfuL for thiS hoLiday SeaSon

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governor SignS MS-Can SPonSored LegiSLation PROTECTING THE RIGHTS OF CALIFORNIANS LIVING WITH MS With the Governor’s final actions taken on over 700 bills sent to him, the first half of the two year 2009/10 legislative session has drawn to a close. Complicated by political rancor, deep budget cuts, numerous lawsuits filed on behalf of individuals affected by the cuts, and the Governor calling seven extraordinary legislative sessions to deal with water, taxes and other reform issues, this legislative year underscored the complex and challenging environment that advocates find themselves at the state Capitol.

Nevertheless, Multiple Sclerosis California Action Network (MS-CAN) (our statewide advocacy coalition) was successful in getting its 2009 top legislative priority Senate Bill 486 passed into law. This bill was introduced by Senator Joe Simitian (D-Palo Alto) in response to concerns about inadequate sharps disposal options raised by Betty Lipkin, a constituent in his district living with MS. MS-CAN was a cosponsor of SB 486 and worked collaboratively with the bill’s other co-sponsors, the County of Alameda and the California Sharps Coalition.

SB 486 is a modest proposal that requires each pharmaceutical manufacturer of sharps/needles to educate consumers and to submit a plan for sharps disposal to the state’s Integrated Waste Management Board. The plan requires manufacturers to post on their websites how each manufacturer intends to assist with the state’s efforts for safe disposal of household sharps. The manufacturers vigorously opposed the legislation in the final weeks of the legislative session. Although MS-CAN and other advocates prevailed, the hard lobbying opposition, did convince some legislators to reverse their votes and kept others from voting for the bill. The bill received support from only 4

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three Republican lawmakers in the Assembly and one Republican in the Senate.

The pharmaceutical companies turned to the Governor’s office where they strongly pressed for a veto. To counter their strong opposition, the California Sharps Coalition, including MSCAN, rallied its constituencies and succeeded in getting several state and local officials to send support letters to the Governor, as well as placing positive op-ed pieces in newspapers across the state. Betty Lipkin also was prominently featured in a full-page ad in the Sacramento Bee asking the Governor to sign SB 486.

The success of SB 486 was due to the tremendous efforts made by so many MS-CAN volunteers and staff. Kudos to Betty Lipkin and ralph Cyr, Northern California Government Relations Committee (GRC) member, who testified before legislative committees; and terry farmer, Northern California GRC Chair, who made multiple visits to legislative offices in the State Capitol. Thanks also to the many MS-CAN volunteers throughout the state who lobbied legislators in their districts, wrote letters to the Governor and contacted local officials to write letters to the Governor. SB 486 becomes law on January 1, 2010.

We’re also pleased to report that two other MS-CAN priority bills for FY 2009-10 were signed into law: aB 144 (Ma) vehicles: distinguishing Placards and Special License Plates AB 144 allows local authorities the option to punish disabled parking placard abuse as a parking violation. This allows enforcement through the citation of a vehicle with a parking

There are currently six disease modifying medications approved by the U.S. Food and Drug Administration (FDA) for use in relapsing forms of MS (including secondary-progressive MS for those people who are still experiencing relapses). Most people using a disease-modifying drug have fewer and less severe MS attacks (relapses or exacerbations). In addition, most people were found to have fewer, smaller or no new lesions developing within their central nervous system as visible in MRI scans.

None of these agents work equally well for everyone, and none of them is a cure for MS, however they all have proven records of partial to substantial success. While these medications play a large role in helping people with MS live with the disease, keeping up the regime can be painful and inconvenient. All of these medications are injectable medications taken anywhere from daily to weekly or through an IV infusion.

Researchers are diligently working to find therapies that can be taken orally and there are many in the pipeline. In fact, after a successful, large-scale 2-year phase 3 clinical study, EMD Serono has applied to the FDA for approval to market cladribine as the first oral disease-modifying therapy of relapsing forms of MS. Cladribine is a chemotherapy that kills immune T cells and B cells, both of which are thought to be involved in immune attacks in MS. ticket, rather than the misdemeanor arrest of a person, as is currently the law. This would make such violations simpler to enforce. aB 1269 (Brownley) Medi-Cal: eligibility AB 1269 revises eligibility for the California Working Disabled Program so more disabled individuals can join the workforce by making the following changes: 1. Allow enrollees who are temporarily unemployed to remain in the program for up to 26 weeks (6 ½ months) during their work transition.

2. Allow enrollees to save their earnings without any limits in a separate account.

3. Allow enrollees to stay in the program and work by exempting Social Security disability income that has converted to Social Security retirement income.

4. Update premiums to 5% of countable income while maintaining current minimum and maximum payment allowances.

StoCking StufferS? hanukkah goodieS? Keep the Movement in your holiday celebrations. Visit the Society store (nationalMSsociety.org and click the window at bottom left). We have hats, mugs, eco-friendly shopping bags, t-shirts, note cards, and more. Prices range from $7.50 to $19.50. You can also visit Art to Shirt at artoshirt.net/servlet/the-MS-artists/ Categories for unusual t-shirts by artists living with MS. Most have the motto: “MS: Find the Cure.” Price: $14.95.

Let your holiday gifts raise money and MS awareness.

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SPonSor of firSt oraL theraPy for MS SeekS aPProvaL froM fda

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northern CaLifornia voLunteer JoinS voLunteer haLL of faMe The Northern California Chapter is proud to announce the induction of Tammy Pilisuk into the National MS Society Volunteer Hall of Fame.

Tammy is one of over 10,000 volunteers who give their time and energy each year in Northern California.

This national honor is a milestone for both Tammy and the chapter.

“Tammy has been a devoted advocate for reforming our nation’s health care system, always careful to safeguard the needs of people with chronic illnesses and disabilities,” says Stewart Ferry, the chapter’s Director of Public Policy. “Tammy is dedicated, hard-working, and skilled in advocacy and policy analysis.”

Every year, Society chapters nominate local volunteers to receive national recognition for their outstanding service who are evaluated by volunteer review panels from around the country. Each of this year’s Volunteer Hall of Fame inductees has motivations which drive their work, similar and yet different from one another.

“I do it because it’s part of the skills I learned in public health school and because I spent many years working on long-term care and family care giving issues.” Says Tammy, “I also do it because of what my family has experienced with MS, the disease my mom has had since before I was born.”

Advocacy, in Tammy’s book, isn’t just writing papers and making phone calls—it is experiential learning made accessible to people 6

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who write laws and make decisions that affect the MS community. “On one trip to Washington DC for the Society’s Issues and Empowerment Forum, I learned that my travel companion could not use the supposedly wheel chair accessible restrooms in either the Hart Senate Building or much of the US House of Representatives. This was a matter of serious inconvenience for us, but also a source of major embarrassment (and, I believe, enlightenment) for the legislators we were visiting. Incidents like that can be the seeds of better understanding,” says Tammy.

So far, Tammy’s two top innovations include her self-advocacy program for people with disabilities and her proposal for and work on the Society’s National Health Care Reform Principles.

Tammy is also a member of the Society’s Federal Activism Council, a group that provides guidance on policy issues at the national level.

We are truly blessed to have many long-term, dedicated volunteers such as Tammy Pilisuk.

Without the time and efforts of volunteers in the areas of advocacy, research, programs, services, special events, office management, and more, our chapter would not be able to provide the depth of support which we do today. If you are already volunteering, thank you; if you are not, please call Shannon today at 1-800-344-4867.

annuaL Meeting Tammy will receive her award at this year’s Annual Meeting. Please come celebrate Tammy and all our volunteers as well as hear the state of the chapter and elect our newest board members. thursday, december 3rd 10:00 am – 11:30 am Pleasant Hill Community Center Parkside Room

savings of more than $6,000 on disease-modifying therapies In August, national health care reform took a step forward when Senator John D. Rockefeller IV (WV) introduced the Affordable Access to Prescription Medications Act of 2009 (S. 1630). A similar bill was introduced to the House in October. Like the bill in the Senate, the House bill would create a monthly $200 per medication cap on all out-of-pocket prescription drug costs, and a monthly $500 per person cap for those taking more than one medication.

According to a 2006 survey, 20% of people with MS polled either did not fill a prescription, skipped medication doses, or split pills. Many of them are insured. But a growing number of insurers are moving expensive medications onto specialty tiers, pricing the treatments out of reach.

“People with health insurance typically pay a fixed amount for drugs on the first three tiers of a formulary,” explained Kimberly Calder, MPS, director of Insurance Initiatives at the Society.

“But when an insurance company moves a drug to the fourth, or ‘specialty,’ tier, the insured becomes responsible for a percentage of the drug’s cost, anywhere from 20-35% or more.”

For drugs like the MS disease-modifying treatments that means thousands of dollars.

“The National MS Society is grateful to Senator Rockefeller for his leadership in supporting caps on monthly out-of-pocket costs,” said Joyce Nelson, the Society’s president and CEO. “This bill would provide peace of mind for thousands of Americans by helping to ensure access for people living with chronic disease like MS.” For more information about the Affordable Access to Prescription Medications Act and to help advocate for public policies that benefit the lives of people living with MS, visit nationalMSsociety.org/advocacy.

Fast Forward, LLC Accelerates Development of Treatments for MS EMD Serono, Inc., an affiliate of Merck KGaA, Darmstadt Germany, and Fast Forward, LLC, a wholly-owned subsidiary of the National Multiple Sclerosis Society, have formed a collaborative partnership to evaluate and fund promising multiple sclerosis (MS) research projects. Proposals will be jointly developed by EMD Serono and Fast Forward.

Merck KGaA the parent corporation of EMD Serono, Inc., will provide up to $19 million in funding. The funds will support early stage clinical development projects with biotech companies or projects with individual researchers or academic institutions. To speed MS research and clinical development, the companies have entered into a two-year worldwide agreement that may extend for an additional three years.

Fast Forward, LLC is a nonprofit organization established by the National Multiple Sclerosis Society to help bridge the gap between research and drug development. To accomplish this goal, Fast Forward partners with early stage biotechnology and pharmaceutical companies to advance therapies, diagnostics, medical devices, and related technologies to treat, reverse, and ultimately cure MS. Fast Forward is committed to deploying its resources to spur development of innovative MS therapies and bring them to market as quickly as possible.

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bill seeks to reduce out-of-pocket drug costs

RESEARCH

where we Stand in reSearCh froM Page 1

drug development subsidiary, which is also attracting its own new funding streams. Thanks to the efforts of our MS activists, an additional $5 million has been specifically set aside for MS research out of the 2009 Department of Defense budget.

Second, we have three clear research goals: Stop MS, reverse the damage, and end MS forever. Here are some exciting projects making headway in our three-pronged approach: • Our portfolio of projects focusing on immune aspects of MS, in particular the large-scale clinical trial of a pregnancy hormone, estriol, and Fast Forward’s recent investments in promising immune-modulating molecules are opening up new avenues to Stop MS. • Our research on rehabilitation and health care delivery, and our four international teams working on nervous system protection and repair (funded by the Promise: 2010 campaign) are making tremendous progress, including plans for small-scale clinical trials to test the safety of cell therapy. These are examples of strategies to reverse the damage.

• The definitive scan for all common MS-related genes being performed by the International MS Genetics Consortium promises a wealth of data. This international collaboration launched by Society funding has the potential to help us find ways to end MS forever.

And finally, we are prioritizing our spending to focus on what’s most important. Our choices, which we believe will be temporary, include: • To continue to fund our discovery research portfolio and fellowships at reduced levels.

• To place some research award programs on hold.

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We hope that the reduction will be of short duration. We have to do everything possible to keep scientists in the MS field. We are poised to make quantum leaps forward. Exciting new technologies, like gene chips, proteomics, and new imaging techniques are allowing scientists to visit ageold questions about MS in new ways. Now more than ever, we need the flexibility and resources to pursue the most promising leads.

Each of us plays a crucial role in fueling MS research and ensuring that the brightest minds continue to pursue the answers that we so anxiously await. Now is the time when each of us must take stock of our own priorities and ask, “What more can I do?” and “Who else do I know who could help?”

Please act now!

CLiniCaL triaLS in MS 2009 We’re pleased to present our annual listing of Clinical trials in MS 2009, featuring ongoing MS trials, as well as those that are being planned or that have been recently completed. This year’s list of 129 studies indicates an exciting time in MS research, with therapies progressing through the drug development pipeline. Check on research progress and see if any trials that need volunteers would be useful to you or a family member.

LOOKING TO THE IMMUNE SYSTEM FOR A CURE The editors of the MS Connection recently spoke with Dr. Larry Steinman about what’s happening at his lab at Stanford. Dr. Steinman is a renowned MS researcher at the Stanford University Medical Center. His research has expanded scientific understanding of MS and he is at the forefront of designing and testing new therapeutic strategies for people with MS. His innovative work has received many honors, including the Society’s John Dystel Prize for Multiple Sclerosis Research, and the U.S. Congress and the National Institutes of Health’s Senator Jacob Javits Award.

MS Connection: Thanks for taking time out to talk with me today. Tell me: how did you first get interested in studying MS? Larry Steinman: I’ve been working in the MS field for over 35 years. I was interested in immunology and the nervous system and MS is the most common disease that attacks the nervous system.

MC: What has changed since you first began studying this disease?

LS: We now have a much better understanding of the disease and how it works. Because of this, we now have a number of treatments for people with MS. MC: How has NMSS supported your work?

LS: I have received countless grants and millions of dollars in support for my research and the work of many of my post-doc fellows here at Stanford. We are using these funds to find the cause and better treatments and ultimately a cure for the disease. For example, one of the grants led to the discovery of the target of an antibody that eventually became Tysabri.

MC: It’s great to hear that these grants are showing real results. Can you tell us about some of your current research and what we might be able to expect out of it.

LS: We’re trying to understand which proteins and which genes and lipids are at play in the lesion itself. We spend a lot of our time with dissected ms legions from autopsy specimens and then we can analyze the results with some of the latest technologies. We’re also working to identify the chemical pathways that are involved with the disease. The expectation from this research is to find new drug targets to treat and eradicate the disease.

MC: What do you think are some of the most promising research breakthroughs on the horizon that can provide hope to people living with MS and their loved ones?

LS: We now undoubtedly see that there’s a major role for the immune system with this disease.

When we block major components of the immune system we find impressive results in relapses and progression. The challenge is to make sure the immune system keeps doing what it’s supposed to do. Our goal is to develop a vaccine to cut off the part of the system that’s in trouble and will leave the rest of the system in tact.

MC: Thank you Dr. Steinman for all the work you do to help everyone in the MS community and thank you for your time today.

LS: Thank you. I’m very grateful for the consistent support and the magnitude of support given by the National MS Society. In return I try to be as active as I can. I serve on advisory boards and grant review committee for the Society and I feel hopeful that a cure is on the horizon.

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RESEARCH

ConverSation with dr. Larry SteinMan

Thank you for making the 2009 Bike MS Waves to Wine Ride a huge success!

Top 5 Corporate Teams Team Chevron ($109,437) Deloitte Difference ($50,341) PWC Rides Against MS ($49,267) Team Google ($41,159) Salesforce.com and Friends ($36,471)

Top 5 Friends and Family Teams The Menstrual Cycles ($55,760) Mitzvah Milers ($55,112) Anti-MS Crew ($47,084) Barreling Up the Coast ($36,130) Team Little Lissie ($29,190)

Our Corporate Sponsors!

Special thanks to: Bay Area Development Bayer Healthcare Charles Schwab

Maxim Waste Management

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Top 150 Fundraisers David Patterson Kate Aks Thomas Galizia Peter Maloney Lucas Schornstein Jim Forni Daniel Siegel Eva Zee Isobel Gotto Michael Randazzo Jay Thayer John Sullivan Andy Dymoke Randi Bethel Steve Kaplan Mike Van Allen Sally Nasman Devang Shah Laura Hawkins Steven Braunstein Michael Murphy Hal Schornstein Gerald Derblich Matthew Frinzi Bob Kearn Adam Carter Dean Mansour Adam Seligman Robert Lytle Matthew Garber Katie Kowinski John Moren Lisa Crooke Steve Rowe Stacie Treposkoufes Samuel Schuchat Don Neu Kristine Marigomen Erika Milvy Scott Raaum Mitch Ashley Megan Windeler Michael Herbert Amy Heredia Len Hirschi Dave Kraemer Melissa Hippard Alan Gellman Bryan Bates Thomas Borst Carly Stanley

Stephen Bahr Elizabeth Ruetsch Daniel Newbrun Heather Childress Dan Kinney John Wright Dan Christman Erica Kuhl Malcolm Plaister Hans Bogdanos Ron Clark Catherine Talbot Marty Rateau Sara Newmann Charles Myers Karl Danz Randy Calish Lars Rohrbach Andrew Myrick Michael Glumac Gordon MacKean Matthew Laroche Tim Finnigan Elva Matamoros Peter Sidell Nishith Kamdar Steven Berger Ben Softness David Nadelman Mary Jo Doherty Karen Hennessy Chad Tarter Carol Koenig Meg Pearson Michael Geschwind Abby Weidner Alan Marx John Graetz Christine Haswell Ken Morikawa Fred Webster Erin Goldberg Dunagan Pearson Evan Doll Mitchell Baum Woody Shiflett Karen Hall John Mishanski Michele Mullis Brian Phillips Terry Barnacal

Ellen Cohen Mark Langer Lisa Helme Ted O’Hanlon Robert Miller Barry Rotman Peter Solvkjar Art Gould McClure Kelly David Asarnow Chris Lotspeich Phillip Ross Gwen Essex Paul Brannan Derek Ching Anne Hollingsworth Joseph Olson Steven Shapiro David Sturtz Ken Zee Dale Perkins William Nystrom Yair Beja Matt Renspurger Will Snow Lane LiaBraaten Mick Jordan Dan Patton Michael Batie Brian Glick Michael Koch Brett Lutz Lance Abreu Terri Gaydon Jerri-Ann Meyer Michael Patterson Philippe Farhi Stephanie Liu Thomas Stevenin Jeff Waldman Michael Warncke David Bixby-Fields Christina Lameraner Elizabeth Walchuk Renske Van Staveren Robert Ernst Larry Delgado Roger Bartley Penny Townsend

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2009 Bike MS Waves to Wine Ride On September 12th and 13th, over 2,000 cyclists rode from San Francisco to Healdsburg and raised over $1.84 million to help create a world free of MS. Not only did we beat our $1.75 million goal in this difficult economy, we had our most successful Waves to Wine ride in 26 years! This is truly a testament to the commitment of our riders, donors and volunteers.

A little rain, hail, thunder or lightening didn’t stop our riders from pedaling 40, 75 or 100 miles on day one from San Francisco up the coast to Rohnert Park. Fortunately, the sun came out for a lovely afternoon at Sonoma Mountain Village filled with tasty food, lively music and entertainment. On day two, cyclists enjoyed a picturesque ride through the ripe vineyards to Lake Sonoma.

Saturday

Saturday

It took nearly 600 volunteers to pull this event off. From stuffing envelopes and making phone calls in the office, to marking the course, manning rest stops, serving food, providing medical service, loading and driving trucks, and much more, volunteers played a critical role in the success of the ride.

San Jose Rocklin/Roseville Eureka

Alameda Modesto Yuba City

Sunday

Sunday

To all of you who supported the ride this year, thank you on behalf of the more than 20,000 individuals and their families living in Northern California with multiple sclerosis. We hope to see you out there again next September.

Santa Rosa Sacramento Walnut Creek Monterey Bay

San Francisco

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04.17.10 04.24.10

04.25.10 04.18.10

“My grandma, Sylvia Rosenthal died after living with MS for twelve years. I never got to meet her. When she was 31, she had tingling in her fingers and blurred vision. Soon she had to walk with a cane and very soon after she began using a wheelchair. From what I have heard, my grandma was an amazing person. She was an artist, she was politically active and she loved to help people. Even though I can’t help her, we can help the 2.5 million people in the world who have MS.” Thanks to Aaron’s creative marketing and enthusiasm, he was able to raise over $1500 at his Stand Against MS. ShoP for MS Another innovative fundraiser in our chapter is Kimberly Daya. Kimberly was diagnosed with secondary progressive MS in 2007. A rising star at a property management company, she was forced to quit her job shortly after her diagnosis.

She recently shared her story with MS Connection. “Knowledge is power and I quickly understood that the more I knew about my condition, the more control I would have over it.

I vowed to myself that although I might have MS ... it would never have me. I made the decision to return to work in February of this year. I started a web and mobile boutique specializing in personal private shopping.”

Kimberly is now sharing some of the proceeds from her new business to help fight MS and has already held two fashion events benefitting the Society. “At Couture Connection we are fusing fashion with inspired giving,” said Kimberly.

“In my personal fight against multiple sclerosis, I am working diligently to fuse a life-long passion for fashion with another endless passion of mine, which is to help find a cure to this very debilitating disease.”

Shoot for MS The First Annual “Shoot Out MS” was held September 28, 2009 with great success! The International Brotherhood of Teamsters Local 853 came together to create this one-of-a-kind skeet shooting event in honor of their coworker and Alameda Walk MS Team Captain Janine Vanier, who has lived with MS for 22 years. Thirty shooters and numerous onlookers were treated to a day of excitement at the Stockton Trap and Skeet Club and over $30,000 was raised for the National MS Society.

This proves once again that just about ANYTHING you have fun doing can be turned into a fundraiser! Thank you Teamsters and Janine for your support and dedication! run for MS Lynn Astalos is an endurance athlete, regularly competing in triathlons, swimming, cycling, and running events of all distances. Having witnessed every member of his family battle serious health issues, Lynn leads an incredibly disciplined, athletic lifestyle. He also can’t deny his love of racing, adventure and competition.

Lynn’s youngest sister Julie, 38, was diagnosed with relapsing remitting MS in Oct. 2006.

She faces multiple health issues, but keeps an unflinching positive attitude and continues to fight the disease.

With Julie as his inspiration, Lynn recently decided to brave the GORE-TEX™ TransRockies Run. During the six days of run, teams of runners from all over the world ran, ate and lived together as they covered 113 miles of spectacular scenery, all at an oxygen deprived 8,000 to 13,000 ft. elevation. To Continued on Page 14 TOLL FREE NUMBER 1 800 344 4867 13

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date, Lynn has raised over $7,500 for the National MS Society and he plans to keep on running and raising money for the Society.

JuMP for MS! On October 3, five people raised awareness and funds for the chapter by skydiving.

Although it was a very windy day, the group could not wait to don their jumpsuits and take the leap (in tandem with an instructor).

These brave individuals jumped for themselves, their moms, and girlfriend and raised almost $2000! This event was so successful that we will be supporting another skydiving event in May 2010. You can join us by raising a minimum of $500. Who will you jump for?

Chapter as your charity. You’ll receive online fundraising tools so your friends and family can donate directly to you. For more information on this program please contact Sarah at sarah.hester@nmss.org. turn your PaSSion into a fundraiSer As you can see, no matter what your passion is—from running to shopping to skydiving or skeet shooting—you can turn it into a way to help create a world free of MS. If you are interested creating a community event or fundraiser, please contact Shannon at shannon.gorman@nmss.org or 1-800-344-4867 option 1 extension 2020.

Visit www.skydive4free.com and choose the National MS Society, Northern California

2010 SChoLarShiPS APPLY NOW! the Society’s scholarship program helps highly-qualified students who have been diagnosed with MS or who have a parent with MS achieve their dreams of going to college.

Kayla Gutierrez, 2009 Scholarship Recipient

Scholarship applications for 2010 will be accepted between october 1, 2009 and January 15, 2010. for guidelines and application information, visit nationalMSsociety. org/scholarships.

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California Ice Adventures presents

hoLiday on iCe day benefitting the National MS Society Northern California Chapter

Sunday, december 6, 2009 Hacienda Crossings & Dublin Toyota (off Hwy 580) 10:00 am to 10:00 pm For every person buying a ticket, $1 dollar will be donated to the National MS Society to support the 20,000 Northern Californians living with MS in our communities. Bring your family and friends and Join the movement to create a world free of MS. For more information, go to www.californiaiceadventures.com.

Individual Donor Program

Meet Golden Circle member Julie Kaufer, National MS Society Board Member

The National MS Society is excited to announce the national launch of The Golden Circle—a special place for people with a special commitment to a world free of MS. On behalf of everyone affected by multiple sclerosis, the National MS Society has created a membership program acknowledging the support from individuals who truly make their mark against MS by making an annual gift of $1000 or more.

Members of the Golden Circle receive unique benefits, including: • Access to chapter and national leadership • Invitations to exclusive local and national special events • Invitations to conference calls to hear the latest progress in MS research directly from worldrenowned scientists, and to pose questions directly to the scientists on the calls • The opportunity to connect with other Golden Circle members—people who share a passion for a world free of MS.

Julie Kaufer’s mother was diagnosed with multiple sclerosis shortly after her younger sister was born. At the time, there were no treatments available for MS. In 1986, Julie’s mom succumbed to the disease after a long, difficult battle. Julie and her family adopted a personal mission to fund the best MS research for a cure. When Julie joined the Southern California Chapter’s Board in 1996, she jumped into an active fundraising role and became involved with the Chapter’s Golden Circle campaign.

“The only way to advance our mission is with contributions,” said Julie. “We can’t wish it to happen, it has to be funded. This past year showed that even in the most challenging economic times, people can connect with the fact that MS doesn’t stop—and neither do we.

Golden Circle is an avenue for more money to be raised for the mission. If people want to get involved with Golden Circle, they can feel assured that their money is directed toward exactly what they want.”

For more information about the benefits of The Golden Circle or how you can join, contact Janelle Del Carlo at janelle.delcarlo@nmss.org or 800-344-4867 option 1 extension 2001.

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AN MS PAIN CHECKLIST Speak up. MS pain is real. More than half of all people with MS experience pain at some time or another. A best first step is to describe it. Make a list of when it kicks up, where it is in the body, and what it feels like. Tingling, burning, aching, stabbing, whatever. This will help a physician make a diagnosis. See next item!

Get an assessment. Take the list to a physician who will work with you to figure out if your pain is muscle-and-bone pain (usually from posture problems), neurologic pain (from short circuiting nerves), or spasticity (common in people with MS). If necessary, refer your professional to “Pain in Multiple Sclerosis” on nationalMSsociety.org. Click “For Professionals” in the gray banner at the top.

Follow a regular pain medication schedule.

If you are prescribed a pain med, take it according to a schedule, not after pain gets going. Many people try to tough it out, believing less medication will be better, but medications don’t work as well if taken after pain has started.

Take a “whole person” approach.

Regardless of the type of pain or the therapy prescribed, other things can be added to reduce pain’s impact: meditation, music, humor, hypnosis, massage, behavioral therapy, exercise, relaxation techniques, yoga. Discuss options with your provider.

Connect with others. Most people find life easier when they learn more about MS pain and reach out to others to share successful coping. Go to the yellow “Symptom Information” box on our home page, click on Pain, and review the resources. And call us at 1-800-344-4867.

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Presto™ Creates Donation Program with MS Society

Receive Email without a Computer Stay connected with family and friends without the frustration and expense of a computer and the Internet. With the Presto Printing Mailbox you don’t need a computer to receive email. There is no keyboard to manage or buttons to push—all you need to do is pick up the automatically printed messages and photos, read and enjoy.

A few Presto highlights: • Personal email address to share with family and friends • Email only from people you’ve approved • Adjustable font size for easy reading • Photo attachments printed in full color • Easy account set up with a toll free phone number “When [my brother] first gave me my Presto, I was skeptical. It is hard for me to type because I have MS … I love my Presto, especially the pictures I receive.” — Elizabeth Jones The Presto Printing Mailbox is currently on sale for $49.99. The required Presto Mail service is as low as $12.50 per month with a yearly plan, or $14.99 month-to-month.

Visit www.presto.com/MSoffer or call 1-800-591-9827 to learn more or sign up for Presto. For every Presto sold to members or friends of the MS Society, choose either two months of free Presto Mail service or a $25 donation to the MS Society to further the mission of moving towards a world free of MS.

We all know good dental care prevents infection, promotes better nutrition and keeps your smile happy. Regular brushing, flossing and visits to the dentist can even help forestall expensive future procedures, like root canals.

a family member to help. Long-handled toothbrushes can be held by a second person.

But, OK, brushing and flossing can be difficult if you experience numbness, spasticity, tremor or fatigue. It may be the last thing on your mind to schedule your twice-a-year cleaning and dental exam with so many other medical appointments to handle. But don’t give in. Here are a few things you can do.

• keep your powder dry and your mouth moist. Some medications used to treat MS symptoms can cause dry mouth, which in turn can lead to gum disease or mouth infections.

• get a grip with tooth “aides.” Ask an occupational therapist about electric toothbrushes, or toothbrushes with a built up or extended handle. You can also try wrapping the handle with a washcloth or sliding it into a tennis ball with a slit cut into it. Weighted toothbrushes may help with tremor. Visit abledata.com to see some examples, plus a few other items such as one-handed toothpaste dispensers.

• Save energy for the important things—like flossing. There are easy-to-use flossing “swords” available in drugstores so the job can be done one-handed. Multitask—floss while watching television or in bed. If you’re too tired at night, floss in the morning. Before sleep is preferable, but any flossing is better than no flossing at all.

If standing at the sink is tiring, sit down to brush and floss. You can also try asking

Schedule dental appointments for the time of day when you have the most energy.

Talk to your health-care providers. They may be able to adjust the dose or even change the medication. If not, ask about a prescription for an oral rinse or a recommendation for an over-the-counter remedy.

You can also try squirting small amounts of lemon juice into your mouth or sucking on sugar-free lemon candies.

Drink plenty of water— staying hydrated will help. Use a humidifier at night and avoid alcohol, tobacco and caffeine.

the MerCury QUESTION very little evidence exists to link mercury-containing amalgam dental fillings and MS. And to have dental fillings removed or replaced is expensive. however, if you are worried about having new amalgam fillings, ask your dentist about alternatives, such as porcelain.

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hoMe SMart hoMe eXPo Changes in today’s real estate market have had many homeowners in the Greater Sacramento region making peace with the house they are living in.

Small bathrooms, narrow doorways and galley kitchens are features of a home that can lead to hardships for those with disabilities, elderly and caregivers. However, with some planning, many of these hardships can be avoided. Often remodeling a home can be a better value than moving to a new home that is likely to require upgrades down the road.

Every person with MS experiences different symptoms that may become disabling.

According to the Sonya Slifka study, 70% of those with progressive MS find that they need mobility aids and support with daily living.

The Home Smart Home Expo, an all-day event hosted by the chapter on September 26th in Woodland, featured speakers and exhibitors who specialized in access for the home. The goal of this program was to support our members to stay independent in their home through out the course of their disease.

With the help of the National Alliance of Remodeling Institute (NARI), our chapter was able to find contractors who specialize in remodeling for access. All of our ten home remodeling exhibitors had products and experience working with homeowners to make their home more functional and customizing to the homeowner’s needs. Steve Weaver, President of EASE, is a general contractor who specializes in remodeling for access as well as installing assistive equipment. Steve was inspired to begin remodeling homes to make 18 JOIN THE MOVEMENT: nationalMSsociety.org

them more accessible after the birth of his daughter who has cerebral palsy.

Home Smart Home also brought current technology to the forefront that is not commonly found at most home and garden shows or at medical supply businesses. For example, companies such as 1st Voice and EXAQ, have voice control devices that will allow people to control functions in their home vocally if mobility becomes challenging.

Caregiver Systems by Home Control can be installed in a person’s home with sensors that can signal caregivers via computer in the event there is a problem. Caregiver Systems does not compromise the privacy of the person living at home independently.

The Home Smart Home Expo was a great success, with members traveling from as far as Redding and Mill Valley to speak with exhibitors and get access solutions. One couple reported that they had taken the last few years caring for their parents. The couple wanted to find out what they could do for family members who would eventually have to care for the couple.

“A majority of homeowners will justify cosmetic renovations to their home for resale purposes,” said Ann Johnson, Program Manager at the Northern California Chapter. “With those same dollars, homeowners could be investing in access solutions that are just as aesthetic and will also increase resale home value.” Home Smart Home brought together interior design and technology to showcase choices that help every homeowner “age in place.”

Exhibitor listings are still available and can be viewed at the event website at www.homemsarthomeexpo.com. Watch out for Home Smart Home in 2010!

with nearly $13 million in active research grants at Institutions such as Stanford University, UCSF, The Gladstone Institute and UC Davis.

During a recent program at the Chapter, Dr. John Richert, the Society’s Executive Vice President for Research and Clinical Programs, spoke about the Society’s primary research goals, also referred to as three cures: to stop MS from progressing, to reverse the damage and to prevent MS from occurring. Several local MS experts (some of whom are also Society grantees), were in attendance sharing information about their work and the promise it holds for people living with MS and those who love them.

We have much to be thankful for when we sit at our Thanksgiving tables this month. However, despite great progress, our work is not done yet.

Due to continuing economic challenges, more

people than ever are depending on us for direct financial assistance, counseling and care. And as a result of limited funding, promising MS research projects have been put on hold.

I hope that you too find much to be thankful for in your life today. And I hope you will consider joining the MS Movement—our MS family—as an advocate, a volunteer, participant or donor. Join us and help make the change you wish to see—help move us toward a world free of MS! Wishing you and your loved ones a happy and healthy holiday season!

David Hartman President

deCeMBer 6-12 iS nationaL fLu vaCCination week The CDC has scheduled this week for December, in the hope that the second shot will be available by then to protect against H1N1 (popularly known as Swine Flu).

Flu vaccines are safe—and highly recommended—for those with MS as long as a “killed” or de-activated virus is used in making the vaccine.

The “regular” flu shot is made this way. A nasal spray called “FluMist Intranasal” is not recommended for people with MS, especially for individuals taking Novantrone, Cytoxan, Imuran, or methotrexate, because it uses a weakened live virus in the vaccine-making process. FluMist is considered safe for healthy children and teens, ages 5-17, and for healthy adults, ages 18-49. All others must roll up their sleeves for an injection.

At press time, the race to produce enough H1N1 to achieve widespread availability is still underway. Recommendations for people with MS will likely be exactly the same as advice for regular flu vaccine, according to Dr. Aaron Miller, the Society’s Chief Medical Officer.

Flu is a menace, but not a reason for panic. Flu shots work. Other wise practices include careful hand washing before eating, plenty of rest, and a diet rich in fruits and vegetables.

Check nationalmssociety.org/flu or your healthcare provider for the most up to date information.

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Northern California Chapter 1700 Owens Street, Suite 190 San Francisco, CA 94158

The Society connects on Facebook People with MS and the people who care about them are discovering the potential of Facebook to raise awareness about the disease—and funds to fight it.

On the Society’s fan page at facebook.com/nationalmssociety, over 11,000 fans are sharing their feelings and fears, and there are now over 1,000 fans of the fan page for the Northern California chapter (facebook.com/msnortherncal).

The online communities provide a space where people ask questions they don’t necessarily feel comfortable asking a professional, questions like how to manage fatigue and a toddler, or if there’s any merit to an herbal tea. You don’t even have Mansi Akruwala to join Facebook to view the page.

Mansi Akruwala tapped into this potential in 2007 when she started a cause page at apps.facebook.com/causes/748—hers was one of the first to link to the National MS Society and is still one of the largest with 135,335 members.

“I thought about how I could use this huge social network to do something,” said Akruwala, a neuroscience major at New York University who is contemplating a career in MS clinical research.

And do something she did, including raising funds for the Society. But she also wanted to raise awareness. “My aunt was 36 when she was diagnosed,” she explained. “There’s so much people don’t know about MS. I thought I could spread the word.”