NORTHERN CALIFORNIA CHAPTER
MoVinG toWARD A WoRLD FRee oF MS | SUMMER 2009
From Alcatraz to Lake Sonoma
SERGIO BARANZINI, PH.D. Associate Professor Department of Neurology, UCSF
In 1992 William Nystrom was an active member of the Golden Gate Triathlon Club, running, cycling and swimming in a variety of triathlons. Then, at the age of 27, shortly after finishing the grueling Dipsea Trail run from Mill Valley to Stinson Beach, he was diagnosed with MS. This came as a huge blow to the young athlete and he dealt with his diagnosis by focusing on keeping physically fit. “At that time I vowed that if I had anything to do with it I was going to live a ‘normal’ life and no one was going to know that I had MS by looking at me,” said Nystrom.
One of this year’s most recent crop of grant recipients, Sergio Baranzini has long been associated with the National MS Society and currently has several active grants that are funded by the Society. His most recent grant—“A systems approach to address biological heterogeneity Becoming a professional athlete and complexity in MS”—will evaluate the Since being diagnosed, Will continued to complex factors that cause MS to find new ways race triathlons and road races and has gotten to treat it. more and more competitive over the years. Recently, we spoke with Dr. Baranzini about the His achievements over the past few years are impressive for any athlete. He placed second at important work he’s doing in the MS field. ContinUeD on PAGe 16
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inSiDe THIS ISSUE
ADVOCACY PAGE 4
GET INVOLVED PAGE 6
RESEARCH PAGE 16
PROGRAMS PAGE 19
MS Connection SUMMER 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 Newsletter Editor • Julie Legrand 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 Teri Hernandez, Treasurer 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 Ken MacKay Doug Richardson, Program Chair John A. Schafer, MD Mercy Medical Group John N. Staples, III Evanston Partners Emeritus Board Members Warren Berl David Korn Fillmore Marks Gary Ryness The Ryness Company
At a recent Chapter program designed for those involved in our work, more people addressing newly diagnosed with MS, I met Charlie, who the needs of those with MS, more people traveled two hours on public transportation helping us drive research for a cure, we are able to attend the program. It was evident that the to do so much more and do it so much better. trip was not easy for him, so afterward, I asked Our volunteers are incredibly inspiring to if he thought the program was worth the trip. me—they are the Charlie told me that ones who best reﬂect he had been to this our compassion for program before and another human being found it valuable, by demonstrating but the reasons he unselfish caring, came back were to patience and just help others who plain love. Volunteers were attending, to who support our share his perspective chapter are vital to our about life with MS, success, so we invite and to offer to help everyone to come them navigate this join us and apply your difficult time in their talents to help create a lives. Charlie has MS world free of MS. and wants to help others. He’s one of Napoleon once our many fabulous observed, “adversity Chapter President David Hartman (right) volunteers. is the midwife of with Board Chair tom Galizzia at Bike MS genius.” In these training Ride. More volunteers difficult economic times, all of us at the Chapter have joined the movement in Northern are working harder, but also smarter. We are California in the past year than ever before. On diligently reducing costs, and seeking better a daily basis we have volunteers helping with ways of doing things, more creative ways of a variety of activities from graphic design, to raising money and attracting resources for data entry, to answering phones, providing peer support. While reductions are not desirable, support and much more. During our big events they can help us plant seeds for future growth. like Walk MS and Bike MS—when we really We have made changes in the approach to our need a lot of concentrated people power—we work that will help us serve the mission better have hundreds of volunteers working entire now, but will also position us to become weekends with us. And with more people ContinUeD on PAGe 10
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President’s Update: How will you join the movement?
Congress Moves on Health Care Reform In June Congress introduced two health care reform proposals, both of which include provisions important to people with MS. The Senate Health, Education, Labor and Pensions Committee (HELP), led by Sens. Chris Dodd (D-Conn.) and Ted Kennedy (D-Mass.), introduced the “Affordable Health Choices Act,” which prohibits insurers from denying coverage based on preexisting conditions and includes caps on out-of-pocket spending, support for long-term care and subsidized premiums for lowand middle-class families. The Energy and Commerce, Ways and Means, and Education and Labor Committees also released a draft bill with similar provisions. Both drafts are expected to be debated in the House and Senate before Congress recesses this August.
Add your voice
As legislators prepare to make this bold move, the National MS Society encourages people living with MS to help inﬂuence the healthcare reform debate by sharing the Society’s National Health Care Reform Principles (nationalMSsociety.org/reformprinciples) with members of Congress and their staff.
Join the movement and contact your legislators at nationalMSsociety.org/advocacy. 4
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nationwide effort to establish MS Disease Registry On behalf of people living with multiple sclerosis, Northern California Chapter MS Activists are joining forces with others nationwide to create and pass House Resolution (H.R. 1362) which would establish an MS Registry at the Centers for Disease Control and Prevention. An accurate measure of the incidence and prevalence rates is needed. And a national, coordinated system to collect and analyze data on MS does not exist. The last national study was back in 1975. That lack of core knowledge inhibits MS research, programs, and services from progressing. The information collected through the registries will provide a foundation for evaluating and understanding many MS factors such as geographic clusters of MS diagnoses, variances in the gender ratio, disease burden, and changes in health care practices It is anticipated that a national registry will involve mining several data sources and health information systems linked electronically. Data sources could include Medicare, Medicaid, private insurers, the Department of Veterans Affairs, physicians, medical institutions and pharmacy databases. Please contact your Congressional representative today and ask them to support H.R. 1362. For more information contact LuAnn Hayden at firstname.lastname@example.org for more information.
ADVOCACY Betty Lipkin (front, third from right) and fellow MS Activists outside State Capitol.
MS Activists play major role in Safe needle Disposal Legislation A top legislative priority for the Northern California Chapter and our statewide advocacy coalition the Multiple Sclerosis California Action Network (MS-CAN) is Senate Bill 486 authored by Senator Joe Simitian (D-Palo Alto). This legislation requires pharmaceutical manufacturers of sharps to submit a plan to the California Integrated Waste Management Board. The plan must describe how each company intends to assist with the stateâ€™s efforts for safe disposal of household sharps. Senator Simitian introduced SB 486 in response to concerns about inadequate sharps disposal options by Betty Lipkin, Northern California
Be an MS Activist Sign up to receive news and updates on health policies, help find solutions to MS issues, and take action on legislation that matters. Visit msconnection.org/advocacy.
Chapter MS Society member and constituent of Sen. Simitianâ€™s. MS-CAN is a co-sponsor of SB 486 along with the County of Alameda and the California Sharps Coalition. The MS Community has a particular interest in finding effective disposal methods for household sharps because of a new state law that went into effect September 2008. This law makes it illegal to throw sharps, like those used to inject many MS medications, into the household trash and recycling. In 2006, SB 1305 (Chapter 64, Statutes of 2006, Medical Waste Management Act), was passed by the Legislature and signed into law by Governor Schwarzenegger. Due to the new law, MS-CAN and its cosponsors determined that additional options for sharps disposal are necessary so that consumers do not continue to throw them into the trash. SB 486 is the first step in creating a better partnership between pharmaceutical companies and consumers, by providing an easier way for consumers to learn about sharps disposal plans companies have developed to help consumers.
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WiLLiAM nYStRoM FRoM PAGe 1
both the Wildﬂower Triathlon in 2004 and the Kaiser Permanente Los Angeles Triathlon in 2006. He has also demonstrated stellar performance at Escape from Alcatraz; he placed third in 2006, fourth in 2007, and in 2008, he took first place in the physically challenged division. For the past 5 years, Will has been sponsored by Erin Baker’s Wholesome Baked Goods who sponsor some of the best triathletes in the country. He is now taking his passion for fitness into his professional world and recently founded Personal Best Products, a line of all natural, vegan products for athletes, including and anti-chafing skin lube and an all-natural sunscreen.
Getting off the Sidelines
What he recalls most about last year’s ride was sitting on the lawn in Rohnert Park at the overnight listening to the inspiring speakers and thinking: “Wow, all these people are here for me and people like me. It was really cool and very emotional and I realized I really needed to get involved in the MS movement myself. By participating in Waves to Wine I hope to raise awareness and inspire others who have been diagnosed. We don’t have to sit on the sidelines.”
Going that extra 25 miles
Will believes that people shouldn’t be afraid of fundraising or the ride itself. He was impressed by the level of support that is available to riders and he believes the ride is accessible to most people. “Don’t let the distances scare you off,” he says. “If you’ve only ridden 15 miles before, you can ride 40; if you’ve only ridden 50, you can go 75; and if you’ve only gone 75, you can do 100. Nobody’s racing and no one is out to prove anything to other people, so just take your time and enjoy the beautiful setting.”
It was a long journey for Will to get to Bike MS: Waves to Wine. For over 16 years, he had been living with MS and participating in all sorts of rides—except for Bike MS. He knew about the ride, but it coincided with some other triathalons he liked to do. He admits, “I didn’t really want to be Like in most of his so associated with MS.” However, competitions, last year Will after winning Escape from loaded down with bars, gels, Alcatraz, he was approached by and other foods to keep his Bike MS Manager Liz Bernstein energy up. After stopping at a who asked him to participate in few Bike MS: Waves to Wine rest Waves to Wine, and after a bit stops, he realized his supply of William nystrom at 2009 snacks were quite unnecessary. of convincing, he agreed. Not San Francisco treasure knowing a soul, Will showed up The Bike MS: Waves to Wine rest island triathlon at AT&T Park on September 13, stops were the most impressive 2008 and hit the road. He soon made friends he’s ever seen. He encourages riders to take full with Barry and Johann who encouraged him to advantage of the rest stops and fill up on the do the 100 mile route, as opposed the 75 miles fruit, drinks, bars and rest. “You’ll be able to ride he was planning on riding, and he was really glad further than you’d ever imagine.” he did. “My experience was very cool,” he said, “the ride was so well organized and so much fun.” 6
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The importance of ﬁtness while living with MS While Will has always been an avid athlete, he says his MS has made him even more competitive. Over sixteen years after first being diagnosed, Will frequently competes in the regular men’s category when the physically
challenged category is unavailable and performs at an elite level. “I’m grateful to do this at all. I’m pretty fortunate. I don’t take what I can do for granted, and I know I’m pretty lucky.” Will pays close attention to what he eats (although he still enjoys that glass of wine now and then), and he adheres to the disease modifying therapies prescribed by his neurologist. His neurologist is convinced that keeping his body fit has helped decrease the exacerbations he experiences. “Physical fitness isn’t stopping the progression,” Will says, “but it gives me a chance to live as much of a normal healthy life as I can. If I stopped training and stopped exercising, I know I’d be in a lot worse shape. There’s no guarantee. With MS, your muscles get weak and keeping your muscles strong and healthy is half the battle.”
Honor Someone Special or Celebrate a Special Event When Doug and Joann tied the knot last spring, they also established a scholarship fund. In lieu of wedding gifts, they asked for contributions. The donations allowed the couple to realize their dream of providing a four-year scholarship to a worthy student living with MS. It was easy. They used the Society’s Honorary Fund page. Anyone can join the movement and honor special people and events. The Society’s Honorary and Memorial Fund page lets you create online tributes or memorials that can be personalized with photos and stories. Fund pages allow colleagues, friends and family to make online donations on behalf of the honoree. Tools help you get the word out and track the progress of your fund. Go to nationalMSsociety.org and click on
Donate. From there, click on Create a Fund. From there you can: • Create an honorary fund to recognize an accomplishment, a milestone, or just say thank you. Commemorate a birthday, wedding, anniversary, or help someone celebrate Mother’s Day or Father’s Day. • Create a memorial fund in memory of a loved one who has passed. HONOR SOMEONE—LONG-TERM Ellen and David recently set up a charitable gift annuity to provide retirement income to Jen, their caregiver of many years. To learn how to establish a charitable gift annuity in tribute to someone special, contact planned giving specialist Gillian Smith at 1-800-923-7727 or visit nationalMSsociety.org/plannedgiving. TOLL FREE NUMBER 1 800 344 4867
Today Will is busy fundraising for our ride in September and he’s already raised $2,000 without trying very hard. “What’s important for people to understand that the ride is a really good time and fundraising is not hard at all. I sent an email out to friends and neighbors when I first registered and also use my Facebook page a lot. All my Facebook friends get daily status updates from me where I incorporate a Waves to Wine plug. It’s so much easier than I expected.”
two Women Ride to Beat MS Thousands of miles separate these two women living with MS. But they share a passion: Bike MS It’s Lisa Disbrow’s first Bike MS event and Christina Hake’s second. Neither had been much of a cyclist until they were diagnosed and then got involved with Bike MS. “I was a complete novice,” Christina said. “Then someone loaned me a very, very nice road bike.” Friends and family helped Christina create the Smyelin’ As We Ride team, and they won Most Spirited Team last year in the Northern California Chapter’s Bike MS: Waves to Wine ride. “We have a joke in our family that we’re all going to live longer because I got this disease,” she laughed. Lisa is busy training with her team, named after her Christina Hake clothing boutique, Scout & Molly’s, for the Eastern North Carolina
Chapter’s September Bike MS event. “I haven’t ridden a bike since I was 10 years old—this will be my first real cycling event,” she said. While she’s hit a couple bumps along the way—once literally a tree root—she’s climbed right back on the saddle. “I was a little banged up, but recovered just fine,” she said. The Society provides all participants in Bike MS events with information about essential gear, cycling techniques, sports nutrition and safety. Support continues on the weekend of the ride with fully stocked rest stops, support vehicles, and enthusiastic volunteers and staff to cheer everyone on. For Lisa Disbrow information on how to get involved here, visit wavestowine.org or call us at 1-800-344-4867.
ACCePt tHe CHALLenGe AN UNFORGETTABLE RIDE. AN UNBEATABLE DESTINATION. A WORLD FREE OF MS. September 12 & 13 1 or 2 day options from 40 to 175 miles Register at: www.wavestowine.org 800-344-4867 An unforgettable two-day journey from San Francisco via Highway 1 into Healdsburg. enjoy six full meals, generous amenities, stocked rest stops every 12 to 15 miles, SAG vehicles, spirited festivities, a wine & beer garden, massage tent, and more. 8
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This past May, “Amazing Race” host Phil Keoghan triumphantly crossed the finish line on his ride across America. Sponsored by GNC LiveWell, Keoghan crossed 14 states, made over 30 stops, and cycled over 3,500 miles from Los Angeles to New York City in just 40 days. In collaboration with GNC’s instore fundraising campaign his feat raised an astonishing $500,000 for the MS movement in just six weeks.
But the excitement isn’t over! The NOW One Square Meal (the meal replacement bar that fueled Phil during his ride) is giving a portion of sales back to the Society on every bar sold now through September. You can help fuel the MS movement – and yourself! For more information visit: nationalmssociety.org/philkeoghan.
Corporate teams: Wells Fargo/Wachovia In addition to the support the company has For the past few years, Wachovia has had one of provided for Bike MS through team member the most active Bike MS: Waves to Wine teams. recruitment efforts and volunteerism, the Wells Now that Wachovia is a Wells Fargo company, Fargo Foundation has generously contributed a team members from both organizations have $7,500 grant to support vital programs helping joined forces as a united team. The joint team, the more than 20,000 in co-captained by Brian Snyder “ Wells Fargo is the Bay Area’s Northern California living with (Wachovia Securities) and Eric Legrand (Wells Fargo top corporate giver among MS. Internet Services Group), ﬁnancial sercives companies” At Wells Fargo, community is dedicated to recruiting leadership is central to the cyclists to participate in this year’s event and company’s Vision and Values. In fact, Wells Fargo raising money to help create a world free of MS. is the Bay Area’s top corporate giver among financial services companies, contributing “Wells Fargo is proud to support Bike MS,” said $16.7 million to local nonprofits last year. Team Maggie Mui, Wells Fargo San Francisco Market members in the Bay Area also contributed outRegion President. “It’s a great opportunity for of-their-own pockets an additional $6.6 million our team to show our support for people in our through the annual Community Support and communities living with MS while also raising funds for research and education.” United Way Campaign and more than 75,000 volunteer hours. TOLL FREE NUMBER 1 800 344 4867
Fueling the Movement
PReSiDent’S UPDAte FRoM PAGe 3
more effective in the future. This year’s Walk MS was a success on many levels. Unfortunately, it did not meet our fundraising goals; in fact, revenue for the chapter’s 11 Walk MS sites was down by 26% from last year. However, the number of walkers and participants increased by more than 13%. We had involvement from a new community, Eureka, that was a resounding success; bringing new folks to the movement and leadership from some incredible volunteers. It is important to note that Walk MS is much more than a fundraising event. Walk MS is an opportunity for people living with MS, and those who care about them, to join others who want to do something about MS and celebrate movement. Walk MS is a rallying point for the MS Movement and we need everyone to join in. Thanks to everyone who walked or rolled, volunteered or donated to this great event. We’re already planning a great 2010 Walk MS program with lots more community involvement, so if you want to get involved, now’s the time. It would be great to be able to survive on the investment of time and talent alone, but we cannot. We must raise more money in order to continue providing vital programs and services for the 84,000 people we serve in this chapter and fund research to find the cause and cure for MS. With those goals in mind, we’ve launched a new fundraising program, in which we are calling on those who can make a financial commitment to help us meet the increased needs of people with MS. The Golden Circle will recognize those donors who want to do something about MS now and are able to make a major financial contribution. If you have the 10 JOIN THE MOVEMENT: nationalMSsociety.org
financial ability to do so, now is the time to step forward and become an inaugural member of the Golden Circle (see page 13 for more details). I have been involved with the National MS Society for many years—long before I became President of this Chapter I was a volunteer and I have been riding in Bike MS: Waves to Wine for more than 20 years. Each year I participate, I am reinvigorated and inspired as more and more cyclists join the movement and help bring us closer to a cure. This year Bike MS: Waves to Wine will be bigger and better than ever! But more important than ever before this year, we must recruit many more riders this year in order to achieve our goal of $1.75 million. So we need your help now! Follow Will Nystrom’s lead (see cover story) and get off the sidelines. If you have a bike, join the ride (our course accommodates 40 to 175 miles, with SAG vehicles that let you ride as little or as much as you like). If you’re not a cyclist, you can ride virtually or captain a team and recruit all your friends and colleagues. In these difficult times, we need each other. We need everyone to step up and share their time, talent and treasure to move our critically important mission forward. Whether you volunteer, walk, ride, advocate or donate, your involvement will help move us closer to a world free of MS. Remember, we make a living by what we get, but we make a life by what we give.
David Hartman, Chapter President
As a person living with primary progressive MS, George Sikaffy hasn’t been able to hold a full-time job for some time and found he had some time on his hands. Looking for something productive to do, he called the chapter and was told to “come on down.” He’s been volunteering at the chapter three days a week ever since. George does a variety of activities from helping with mailings to making phone calls and other administrative work. This summer, George is the friendly voice that welcomes new cyclists on board once they register for Bike MS: Waves to Wine. He orients them to the resources available to help them reach their training and fundraising goals. George says it’s pretty easy, but with speech challenges he has as a result of his MS, he’s admits he’s pretty tired at the end of the day. “But it’s worth it,” he says. “I really feel that I’m making a difference and people are very thankful for the calls.” Prior to being diagnosed with MS in 2005, George was most proud of his golf game and guitar playing. Today he is most proud when he doesn’t fall down. Volunteering at the National MS Society is an opportunity for George to make a difference for other people with MS while staying connected to the community by spending time in the office with staff members and other volunteers. As a result of the time in the office, he’s learned about many of the
programs and services offered by the chapter and he’s now a member of the San Francisco 20’s – 30’s self-help group, which has been a valuable experience for him. “George’s perseverance inspires everyone with whom he works. It’s one thing to work for people with MS; it’s another, much more exciting thing to work with people with MS towards the same goal. He has made such a difference in both our Walk and Bike campaigns,” says Shannon Gorman, the chapter’s Volunteer Coordinator. George agrees that volunteering at the National MS Society is a great place for people with MS. Volunteers at our chapter do everything from answering the phones, helping with graphic design, doing data entry, stuffing envelopes, walking dogs, working at Bike MS and Walk MS events, running self-help groups, and much, much more. No matter what your skills, interests or abilities are, we have a great job for you.
Want to Make a Difference? Since February of this year 932 volunteers have donated 5,793 hours to help bring us closer to a world free of MS. If you want to get involved, please contact Shannon Gorman at Shannon.gorman.@ nmss.org or 1-800-344-4867, option 2.
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Volunteer Spotlight: George Sikaffy
never too Young to Make a Difference Initiative and dedication are two words that describe ten year old MS Activist Saeje. Saeje recently ran her own lemonade stand and raised over $3,000 for the National MS Society’s Stand Against MS Campaign. When describing the preparation for her stands, Saeje let us know that “if you want to build a lemonade stand in your area always ask your mom and dad for help.” Saeje explained that this is a “good way for kids to get involved and help if they have a parent or aunt with MS.” This achievement highlights one of the newest campaigns to grace the Northern California Chapter of the National MS Society, which invites families and community groups to take a stand against MS. As Saeje illustrates no one is ever too young to make a difference, especially when it comes to creating a world free of MS. The Stand Against MS campaign invites neighborhoods, schools, businesses, churches, and families to host their own lemonade stands and donate the proceeds to the National MS Society. These stands can be held in a variety of places, with the ultimate goal of not only raising funds, but to also building an awareness to the
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challenges faced by people living with MS. Throughout the summer of 2009, different community groups can now register to hold their own lemonade stands. Ultimately, the National MS Society plans to collect over $15,000. It is a large goal, which is why we need your support. If you or someone you know is interested in holding a lemonade stand then visit msconnection.org/ stand or call 1-800344-4867 to register and receive the Stand Against MS toolkit. Adults and children like Saeje are helping to make a difference in the fight against MS. Join the movement today and help us move closer to a world free of MS.
take a Stand Against MS Who: National MS Society, key volunteers, group leaders, schools, churches and kids in the community What: Families and groups hosting lemonade stands with The Stand Against MS messaging to raise awareness and funds for the National MS Society Northern California Chapter When: Summer 2009 Where: Across 40 counties in Northern California Why: Raise awareness and fundraise to create a world free of MS How: Visit msconnection.org/stand to download your planning toolkit or call 1-800344-4867
For those of you who are active social networkers, come meet us online at our Facebook and Twitter pages. These are great ways to stay on top of the latest news coming out of the chapter and to ask questions and share information with other people in our MS community. Search for “National MS Society Northern California Chapter” on Facebook and you’ll find our fan page. You can also find us at www.twitter.com/MSNorthernCal.
Join the national MS Society’s
Be a part of a group of forward thinking people who know that the quest for a world free of MS must continue. The Lawry Circle honors donors who have informed the Society of their intention to help create a better future for people with MS through a gift from their will, trust, or estate plan. The Lawry Circle is named in honor of the Society’s Founder, Sylvia Lawry. Her motivation was to cure her brother Bernard of MS. Because of you, Sylvia’s work will continue. If you have included the Northern California Chapter in your estate plans, please inform the Society of your intentions by contacting Janelle Del Carlo, Executive Vice President at 415-230-6678 ext. 2001 or email@example.com.
the Golden Circle
The Northern California Chapter has just launched a new program that recognizes donors who have demonstrated their commitment to the Cause, Care and Cure of multiple sclerosis. This program is our premier recognition program, designed for annual donors capable of making gifts of $1,000 or more. Members of the Golden Circle carry on a tradition from the Society’s founder, Sylvia Lawry, who raised $100,000 in 1946 from friends and family members to try to find an answer to the puzzle of this unpredictable disease. The Golden Circle will fund: Cause – Gifts to the Chapter’s Greatest Need enables us to dedicate money where the local community needs it more. Care – Gift to Local Programs and Services helps fund client programs that provide critical knowledge and improve the lives of those with MS to ensure independence and to optimize their quality of life. Cure – Gifts to Research support dedicated researchers who are seeking the cause, treatment and cure for MS. If you would like to learn more about supporting the Golden Circle, please contact Janelle del Carlo at (415) 230-6678 or visit msconnection.org/donate. TOLL FREE NUMBER 1 800 344 4867 13
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thank You For Making Walk MS 200
Top Teams 1. Pear’s Pack 2. MSKeteers 3. Linda’s Marvelous Supporters 4. Double D’s 5. Frankie’s Angels 6. TeamMSters 7. Victorious 8. The Kratt-lamehs 9. Team CW 10. Angela’s Angels 14 JOIN THE MOVEMENT: nationalMSsociety.org
09 A Huge Success!
Top 100 Walkers 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.
Perry Ann Jeveli Larry Etcheverry Diana Keith Frankie Harper Linda Pfeiffer Casey McCormick Mindy Zuckerman Steven Schlosser John McGuire Betty Masolini Jean Harper Janine Vanier Judith Nitchie Pauline Stavaris Gretchen Kimmel Shauna Silva Ruth Yoder Carol Laucella Jaime Kemmer Janice Ertola Jannette Vargas Matthew Zises Elizabeth Quinn Doug Richardson Regina Miller Diana Opela-Postma Helen Schultz Marci Biagi Jennifer Kaliser Susan McCarty Marissa Zankich John Topping Eli Morowitz Patricia Brandeburg Becky Olson Ben Mysliwski Dave Hultman Stacy Engle Laura Bowen Patricia Landauer Stephen MacGovern John Mattos Carolyn Meehan Abbe Funk Todd McLaughlin Diane Dodd Judie Block Brian Garber Eileen Paul Raul Tapia
51. Michael Gottwald 52. Robyn Hersey 53. Korene Mangelsen 54. Karin Krattli 55. Shayne Herrera 56. Angela Nuckles 57. Sheryl Turner 58. Melody Onwiler 59. Joshua Baker 60. Harvey Rose 61. Courtney Williams 62. Donna Hayes 63. Renae Smith 64. Stacey Saxon 65. Catherine Carmichael 66. Sheeba Peter-Frank 67. Jaisell Knierim 68. Maureen Blume 69. Roberta Allen 70. Vicki Mastbaum 71. Mark Warren 72. Sean Hudson 73. Kristine Demafeliz 74. Jana Spotts 75. Maureen Oâ€™Connell 76. Candace Miyahira 77. Cristina Tapia 78. Steve Mendez 79. Natalie Deutsch 80. Douglas Gillott 81. Mary Tschida 82. Carole Weston 83. Robin McLaughlin 84. Kathy Finney 85. Ed Diaz 86. Adrianne Shroyer 87. Sylvia Longmire 88. Navid Mansourian 89. Ian Monsoor 90. Rick Schultz 91. Sarah Janus 92. Teresa Richardson 93. Kelley Cowan 94. Lorri Peterson 95. Carolyn Dicks 96. Angela Lai 97. Lilia Rosenheimer 98. Tukey Seagraves 99. Allison Black 100. Molly McDonald
Thanks again to our sponsors Special thanks to: teva neuroscience, inc. Bayer HealthCare Pharmaceuticals Walmart Foundation Samâ€™s Club Foundation Yelp TOLL FREE NUMBER 1 800 344 4867 15
ReSeARCHeR SPotLiGHt FRoM PAGe 1
MS Connection: You’ve been working in the MS field for a long time. Can you tell us how you first got interested in MS research? Sergio Baranzini: Sure. I’m originally from Argentina where received my PhD in Molecular Genetics at the University of Buenos Aires. After completing my thesis in muscular dystrophy, I decided I really wanted to give a twist to my career where I could identify genes for a complex disease (as opposed to a single gene disease). After graduate school, I moved to San Francisco to complete my post-doc fellowship at Jorge Oksenberg’s lab at UCSF and have been working in the MS field ever since. I joined the faculty in 2004 and since then I’ve been looking at disease progression and how the study of genes can guide us to classify patients, predict the progression of the disease and determine the best treatment options for a given gene expression. MS is one of the most complex diseases out there, and I find it extremely intriguing from a scientific standpoint. MC: It certainly is. How do you approach such a complex disease? SB: I’m working on pure genetics studies with Jorge and others in the Consortium on “Bioinformatics.” In a typical experiment we screen the activity of 50,000 genes in a single sample and need to look at 50 to 100 samples which results in several million data points. That’s a lot of data and we need lots of computer power and statisticians and mathematicians to help us weed out good data from noise. It’s a very fascinating field that holds a lot of promise for MS research. MC: That does sound promising. Which leads me to the topic of your most recent grant. We know that this year receiving grant funding was even tougher than ever, so congratulations on 16 JOIN THE MOVEMENT: nationalMSsociety.org
this. Can you tell us why you think the committee saw this project as so hopeful to people with MS? SB: The exciting part about this grant is I am trying to integrate information from different sources that are being collected by our lab and others using heavy computer work, theoretic background, complex systems and biology to get a better understanding of MS. We’re hoping to find out what is the difference between MS and other complex diseases and where MS lies in the disease landscape. Based on these data, we’ll know what is different and we can use this information for new treatments and diagnostics. MC: That sounds very promising. I know that you have several other grants from the National MS Society, can you tell us more about these? SB: Sure. I received an Advanced Postdoctoral Fellowship and the Harry Weaver Neuroscience Scholar from the Society and I’m currently working on two other research grants. The first is entitled: “Regulation of gene expression in MS through the analysis of microRNA patterns.” MicroRNA is a recently discovered type of RNA that has regulatory expression. We’ve learned that there’s an interesting set of microRNA which correlates with messenger RNA that was identified before. We’ve just finished a proof of concept with a limited number of samples and now can do this in a much larger study. We’ve also identified interesting gene expression profiles using a single cell type from the blood which turned out to be the key for increased sensitivity for the detection of patterns and we’ve identified subgroups of CIS patients who converted to MS at a faster rate than other MS patients. The second grant is titled: “The MS transpitome: Functional genetic analysis of multiple sclerosis” which involves analyzing the transcriptional profile of the blood of 400 patients and comparing them to 100 controls.
MC: Wow, sounds like you have your hands full. How can people learn more about your work or participate in some of your studies? SB: We’re always looking for people to participate in our studies. People with MS can visit our website http://neurology.ucsf.edu/msc/
research.html to learn more about the studies that are currently open to enrollment. They can also learn about some of our ongoing studies and research at www.msgenes.ucsf.edu or learn about every research study that was published at the NIH’s Pub Med database www.ncbi.nih.gov/ pubmed.
This is largest studies of its kind for any disease. I really have to commend the Society for having the courage and vision to fund this project because it was so ambitious. What we’re looking for is the signature of MS in different stages of the disease., and then we can apply different treatment protocols. We hope to be able to establish signatures of early stages of the disease versus late stages and the different types of the disease and determine which treatments respond well and which don’t under the various circumstances based on patterns of genes found in the blood of people with MS. We just finished the first phase of the project and have processed the arrays of 150 individuals. The analysis phase will take a couple of months.
MC: What hope do you see for people with MS? For a cure? For better treatments? SB: As a scientist, I think it’s a very exciting time because of the rapid development of new technologies that enable us to do research at a pace that was simply unheard of in the history of research. These last 5 years and the next 10 years will be extremely productive to identify the causes of MS. As a patient, this is very good news. While there are palliative therapies around now, it won’t be until we understand what causes MS that will be able to cure it. By analyzing the data using new technologies we will be able to find the causes and we’ll be able to find rational therapies for each individual.
Society Awards new Research Grants The Society has just announced $15.8 million in new research grants to 45 grantees across the county. Three of these grants were awarded to Northern California researchers, and they totaled $978K (6.2% of total). The selection process is very rigorous and competitive and grant proposals are carefully reviewed for merit, relevance and budget by a volunteer committee of over 75 leading scientists, physicians and other professionals in the field of MS. There are now nearly $13 million in active research grants in Northern California research institutions. Congratulations to our newest awardees: Sergio Baranzini, Ph.D. University of California, San Francisco Funding: $699,836 “A systems approach to address biological heterogeneity and complexity in MS.” Evaluating the complex factors that cause MS to find new ways to treat it.
Michael Kurnellas, Ph.D. Stanford Medical Center Funding: $135,948 “The molecular mechanisms of the therapeutic benefit of alpha B crystallin.” Exploring a naturally occurring substance produced by cells for its therapeutic potential in MS. natacha Le Moan, Ph.D. The J. David Gladstone Institutes Funding: $143,223 “Study of hypoxic mechanisms and functions in inﬂammatory demyelination.” Exploring early events that lead to nerve tissue damage in MS. For more information about research that’s being funded in Northern California visit www. nationalmssociety.org/research/research-we-fund/ index.aspx. TOLL FREE NUMBER 1 800 344 4867 17
UC Davis Fingolimod study seeks participants The UC Davis Multiple Sclerosis Program is pleased to announce its participation in a study of a new investigational treatment, fingolimod, for primary progressive multiple sclerosis. The goal is to determine whether this new investigational treatment will slow the progression of disability and evidence the changes in the MRI. Some criteria for participation are: •
Age 25 through 65 years of age
• Have a diagnosis of primary progressive multiple sclerosis with at least one year of progression of symptoms • Time since first reported symptoms between 2 and 10 years with some disability currently • Have no significant cardiac or respiratory conditions For information concerning the study, please contact the UC Davis Multiple Sclerosis Program at (916) 734-6276.
Researchers Need You Researchers are committed to finding out what causes MS and how to cure it. People living with the disease may hold the key, and without their participation MS research would come to a standstill. People with MS, and sometimes family members, can make a difference by donating their DNA from blood samples and by volunteering for clinical treatment trials and other studies. Learn about trials in Northern California at nationalmssociety.org/ chapters/CAN/programs--services/ resources/clinical-trials/index.aspx or visit our national website for a list of all known current research projects nationalmssociety.org/research/ researchers-need-you/index.aspx
$19 Million for MS Research Fast Forward, LLC, a program of the National MS Society, recently garnered $19 million for early-stage MS research through a new partnership with EMD Serono. “This partnership will provide critical resources to under-funded stages of the drug development process,” said Dr. Timothy Coetzee, Fast Forward’s executive director. For more information, visit fastforward.org.
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By Allen C. Bowling,MD, PhD Recent studies have significantly changed our understanding of the role of vitamin D in health and disease, and some of these new understandings have important implications for people with MS.
Another option is simply to take vitamin D supplements without the blood test. The disadvantage of this “blind” approach is that vitamin D supplements may be unnecessary or the doses too small or too large.
In the past, it was assumed that most people had adequate vitamin D levels and that the effects of vitamin D were restricted to regulating calcium absorption and maintaining bone health, including the prevention of osteoporosis (thinning bones). Studies over the past decade have shown that these views are incorrect and that up to 90% of American children and seniors may be vitamin D deficient.
The final option is to do nothing. People who take this option won’t spend money on testing or supplements, but if they are vitamin D deficient, they won’t obtain the potential benefits.
YES, IT MATTERS In addition to effects on calcium absorption and bone health, vitamin D exerts important actions on many other body systems, including the immune system. Adequate levels may improve muscle strength and prevent or decrease the severity of MS. Inadequate levels have been implicated in several forms of cancer, heart and lung diseases, depression, schizophrenia and a number of other autoimmune conditions. Much additional research on vitamin D is clearly needed. But based on current information, there are options for people with MS to consider. One is to have a blood test known as “25-hydroxyvitamin D.” The test shows how much vitamin D is actually in a person’s body — and that’s the real measure of a deficient or adequate level. If the vitamin D level is low, supplements in appropriate doses can be taken.
To determine an appropriate vitamin D strategy, people with MS should discuss their situation with their health-care provider. Dr. Allen Bowling is the medical director of the Multiple Sclerosis Service at the Colorado Neurological Institute (CNI) and clinical associate professor of Neurology at the University of Colorado-Denver and Health Sciences Center. Additional information about unconventional medicine may be found in his book, Complementary and Alternative Medicine and Multiple Sclerosis (2nd edition, Demos Medical Publishing), and on his website, NeurologyCare.net.
Sources of Vitamin D • Sunshine, BUT - Most people with MS need to avoid overheating - All people need protection from skin cancer (sunscreen, sunblock, hats, etc.) • Fortified foods, including brands of orange juice, cereals, dairy products • Oily fish, such as salmon • Supplements TOLL FREE NUMBER 1 800 344 4867 19
Are You Getting enough Vitamin D? Does it Matter?
newly Diagnosed? take Steps By Nancy Reitman, RN, Professional Rescource Center Nurse You’re in touch with the National MS Society (or you wouldn’t be reading this). We hope you’ve signed up for the at-home course, “Knowledge Is Power,” which is available by mail or e-mail. It’s designed to answer a lot of your questions.
moving throughout your life with MS.
If you loved a sport before MS came along — any sport from golf to ice hockey — you may be in luck. Call us for help in finding associations that promote adaptive programs in your sport. The chances are that there is one — or you may find We also hope you’ve called us if you want to talk one-on-one with someone who’s been where you another sport just similar enough to the one you loved to take up instead. Even if your sport is too are now. On the other hand, you may feel you’ve been given more advice than any one person could intermittent to work at every week (skiing for example), or too inaccessible (no hockey rinks possibly absorb. nearby), you still can develop a habit of pleasure in But there is one more thing. As a person with MS, exercise that is something to build on. you’ll need to move it. But if you are in the majority, and sports are Two researchers at the University of Illinois, so in your past or so not in your life ever, you Urbana-Champaign searched the medical have a challenge. Dr. George Kraft, professor literature for studies on MS and exercise from of Rehabilitation Medicine at the University of 1960 to 2007. Of the 43 papers Dr. Robert Washington, says, “You need a prescription for a Motl and his colleague Erin Snook found and regular exercise program just as much as you need reviewed, 22 had enough data to compute “effect one for medications to slow down your disease or sizes”—and “the weighted mean effect size was control your symptoms.” significantly different from zero.” You may need to ask your physician for that At the 2008 Consortium of MS Centers prescription — and for a referral to a physical meeting, the two researchers concluded: “The therapist or a rehabilitation physician — and you cumulative evidence supports that exercise may need to educate the therapist about MS. As training is associated with a small but meaningful Dr. Kraft points out, many PTs are trained in sports improvement in walking mobility in people with medicine or how to deal with the aftereffects of MS.” accidents or stroke. Ask about their experience with MS. It’s appropriate to invite a PT to contact What does that mean in plain English? the Society’s Professional Resource Center at Move it and you are much more likely to keep HealthProf_info@nmss.org to learn more about MS. Studies Have Also Shown Exercise has positive effects for people with MS who have • fatigue (yes, MS fatigue) • cognitive problems • depression • weight control issues • poor balance • muscle weakness 20 JOIN THE MOVEMENT: nationalMSsociety.org
It’s also appropriate to develop an exercise program that fits your lifestyle and appeals to you personally. The Illinois researchers analyzed studies on exercise, not formal physical therapy sessions. For more information about wellness opportunities in your area, visit our website at msconnection.org or call 1-800-344-4867, option 1 to speak with an Information and Referral Specialist.
Whether you’re recently diagnosed, or managing “an old friend” of a symptom, the Society offers brochures on a range of issues related to MS. These brochures are reviewed by experts in MS and regularly revised for the most accurate information possible. Some brochures updated in 2009 include Living with MS; Multiple Sclerosis and Your Emotions; Research Directions in MS; Win-Win Approach to Reasonable Accommodations; Food for Thought: MS and Nutrition; A Guide for Caregivers; Solving Cognitive Problems; and Depression and Multiple Sclerosis. In addition, a number of brochures are now available in Spanish.
Momentum is online Want to meet other people living with MS? Read about the latest MS research and therapies? Momentum, the national magazine of the Society, offers this and more.
WHERE TO FIND You can read or download PDFs of Society brochures at nationalMSsociety.org/brochures or call 1-800-344-4867 for print copies. For easy searching, brochures are divided into eight categories: General Information, Newly Diagnosed, Employment Issues, Staying Well, Managing Specific Issues, Managing Major Changes, For Children & Teenagers and Información en Español. You can also download a PDF catalog with brief descriptions of all the publications the Society offers clients. EXTRA! EXTRA! One brochure regularly updated with breaking news is Disease-Modifying Drugs. The online version (nationalMSsociety.org/DMD) includes the most recent information possible on the disease-modifying drugs Avonex, Betaseron, Copaxone, Novantrone, Rebif and Tysabri. The booklet covers how they are taken, their benefits, side effects, and how to pay for them. Check back regularly for new reports on DMDs.
Each issue of Momentum is online in convenient PDF format, free, and often before a print copy can reach your mailbox. Clickable links give you immediate access to more info on a given topic and allow you to respond to stories with your own thoughts and tips. Download and send any story to others via e-mail. Go to nationalMSsociety.org/magazine and click on Current Issue or Find a Back Issue. FOR READERS WITH LOW VISION Click on the magnifying glass icon to enlarge any Momentum page, two, three, even five times bigger. TOLL FREE NUMBER 1 800 344 4867 21
Read All About it in Society Brochures
Seventy percent of people with MS are unemployed and at least half of these people would like to be working. If you’re one of them—or know someone who is—check out the latest offering from MS Learn Online, MS in the Workplace. This free two-part webcast presents strategies to help you reenter the workforce— and maintain your place once you’re in it. MS in the Workplace is on nationalMSsociety.org/ webcasts. Part 1 is targeted toward the employee or potential employee with MS. Rehabilitation counselor Dr. Kurt L. Johnson addresses issues as varied as how to harness energy and improve cognition to how to navigate your health care and the human resources department in a prospective company. Getty Photodisc
MS Learn online teaches Job Strategies
Part 2, targeted to people in hiring positions, gives employers the basics on MS, and features some who have employees with MS. “Their personal stories show that people with MS are as productive as anyone else,” said John Aden, senior manager of Program Development for the Society. It also shows what “reasonable accommodations” mean, and under what circumstances an employer is responsible for putting them in place. “This video clears up misgivings an employer might have,” said Aden. “Someone with MS, or a
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member of his or her family can send this link to an employer.” Other employment resources include nationalMSsociety.org/momspr08 for Momentum magazine’s article, For A Successful Job Interview. And even before you’ve landed that job, check out: Disclosing MS in the workplace. Click through the menu on the right for a program to help you make an educated decision on whether or not to disclose your medical condition— and to whom. Rehab counselors often advise their clients to ask themselves: Why am I telling? Who am I telling? How much am I telling? What are the positive and negative results? If the anticipated results fall more often in the positive than negative category, that will help you decide. Remember the bottom line: Once you disclose, you can’t take it back. For more information, go to nationalMSsociety.org/disclosework.
MS Learn online Other MS Learn Online programs address research, intimacy and symptom management. They are all accessible any time of day or night. No registration is required. Go to nationalMSsociety.org/ mslearnonline.
Published on Jul 29, 2009