NORTHERN CALIFORNIA CHAPTER
MOVING TOWARD A WORLD FREE OF MS
| WINTER 2012
$16 million launched to support 32 new MS research projects
Jonah Chan, PhD, of UCSF receives grant of $680,625 In developing the National MS Society’s 20112015 strategic response, the Society sought to envision what the world should look like for people affected by MS in the year 2015. Through an extensive outreach to a wide range of external and internal audiences, we heard from nearly 10,000 individuals about their hopes, dreams, concerns, challenges and experiences – what they want from the MS movement. Their information, stories and advice were critical in the formulation of this plan, focusing our efforts to drive necessary change over the next five years. While we heard many ideas and messages that are reflected in the development of the 2011-2015 strategic response, several themes emerged as top priorities, one of them being that more Society resources should be dedicated to scientific research aimed at stopping disease Walk MS: Northern California 2012
12 walk sites. One destination. A world free of MS. Registration is open for Walk MS: Northern California 2012. Visit www. walkmsnorcal.org to register as a walker or volunteer, form a team, make a donation, or be an event sponsor. Step by step, dollar by dollar, Walk MS is changing lives. Picturing Disability Page 3
Chick Lit & Wine Page 4
progression, restoring function and ending MS forever. The National MS Society is launching $16 million to support 32 new MS research projects. This financial commitment is part of an anticipated investment of $45.2 million in fiscal year 2012 to support new and ongoing research projects and Fast Forward drug development partnerships. “This is a time of great promise for people with MS, with more therapies available than ever before, and many other novel strategies being explored in clinics and laboratories worldwide,” observed Timothy Coetzee, PhD, the Society’s Chief Research Officer. “We are grateful to these scientists collaborating around the world whose work is moving us closer to ending MS.” Northern California Research Currently there is over $11 million in active research grants that take place in Northern California research institutions including UC San Francisco, UC Davis, Stanford University, The J. David Gladstone Institutes, and others. Continued on page 15
Preparing for Pregnancy Page 12
Year End Giving PAGE 6
MS Connection Winter 2012 National MS Society Northern California Chapter 1700 Owens Street, Suite 190 San Francisco, CA 94158 415-230-6677 | 800-344-4867 Chairman • Angie Lai Chapter President • Janelle Del Carlo Newsletter Editor • Jen Gainza The National Multiple Sclerosis Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The National Multiple Sclerosis Society assumes no liability for the use of contents of any product or service mentioned. Information provided by the Society is based upon professional advice, published experience and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. The National Multiple Sclerosis Society recommends that all questions and information be discussed with a personal physician. The National Multiple Sclerosis Society is dedicated to ending the devastating effects of MS. © 2009 National MS Society, Northern California Chapter
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Board of Trustees Board Officers Angela E. Lai, Chair Wells Fargo Private Client Services Katherine Bock, Secretary Lazard Frères & Co., LLC Thomas M. Galizia, Immediate Past Chair & Governance Committee Chair Deloitte Consulting David Larson, Treasurer Piedmont Grocery Board Members Laura Black, Audit Chair Needham & Company Nancy Byl, PT, Ph.D. UCSF Physical Therapy and Rehabilitation Science Jonah Chan, Ph.D. UCSF Department of Neurology C. Budd Colby, Ph.D. Colby Biomedical Consultants Elizabeth Crabtree-Hartman, MD UCSF MS Center, Department of Neurology Anthony DeLizza, Program Co-Chair First Light, LLC Michelle Dennedy Oracle Heather Fargo Strategic Growth Council Matt Frinzi Powervision, Inc. Douglas S. Goodin, MD UCSF MS Center David R. Hultman Bank of the West H. Penny Knuff Fiduciary Trust International of California Doug Richardson, Program Chair Chuck Robbins Cisco Systems John A. Schafer, MD Mercy Medical Group Dan Stokes JStokes & Associates Jay Thayer Salesforce.com Emeritus Board Members David Korn Fillmore Marks Gary Ryness The Ryness Company
Living with MS
PICTURING DISABILITY by donna fellman Twenty years ago, in August 1991, when my children were six, four, and 11 months old, I was diagnosed with MS. My youngest child, Kaija, was taking her first steps while I was losing the ability to walk. I used a cane, but soon needed crutches, and by the time Kaija was two, I was using a wheelchair most of the time. Last year, in a college photography class, Kaija was given the assignment to do a photographic essay. She chose “Disability” as the subject and framed images that showed her development as a little girl with portrayals showing the progression of my disability. There is a photo of her little shoes with my cane, representing her learning to walk alongside my difficulty walking. Included is a sequence of shoes to illustrate her growing up, my mobility aids, our legs together, her self-portrait in a wheelchair, and other images depicting her memories and perceptions of disability.
We talked about what it was like for her and her brothers growing up. Looking at her little red shoes, I said to Kaija that I had never held her hand and walked with her. Her reply: “I always had your lap.” Donna Fellman lives in rural Maine. Copyright Kaija Fellman
We Need Your Personal Stories! The National MS Society California Action Network (MS-CAN) is sponsoring a bill in the state Legislature, AB 310 (Ma, D-San Francisco), that would prohibit health plans and insurers from using “co-insurance” (a percentage of the cost of the drug), and cap out-of-pocket prescription co-pay costs for people living with MS and other chronic diseases. The intent of the bill is to reduce consumers’ out-of-pocket costs for prescription drugs by eliminating “specialty drug tiers” which provide the insurance plans with the ability to use a co-insurance to share a substantial amount of the costs of the most expensive medications with the patient. Continued on page 5
TOLL FREE NUMBER 1 800 344 4867
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LIVING WITH MS
Chick Lit & Wine by Danielle English
In Cheap Cabernet: A Friendship, author Cathie Beck pulls the reader in with the dramatic, poignant — and surprisingly funny — memoir of having two kids and being a single mother at a terribly young age. After Cathie’s kids are grown she becomes an empty-nester at age 39. She’s ready to live the wild life she missed out on. The only glitch in the plan is she doesn’t have a group of girlfriends by her side. So she puts an ad in the paper. She whittles down the responses to a handful, then eventually down to one – her soon-to-bebest-friend Denise. This is when the book started to hit home for me - Denise has multiple sclerosis. The book takes place before treatments for symptom management were created, and the fact that Denise was in denial about what was happening to her body didn’t help. This probably sounds a lot like a book review. It is. But it’s also a personal reflection on dealing with MS and thinking about the future. I started Chick Lit & Wine – a book review site where I review Chick Lit books and pair with wine – as
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a way to keep up my writing while indulging in two of life’s greatest pleasures. A portion of book sales is donated to the National MS Society, and I thought the connection ended there. That was before I stumbled upon Cheap Cabernet. More than just an alluring title, I soon found myself face to face with many of my own fears about MS. When I was introduced to Denise, her struggles became my struggles. Her depression made me scared for my future. I didn’t want to admit that I was anything like her – and yet, don’t we all have these feelings in some form? At first, Denise’s storyline shocked and depressed me. But it made me realize it doesn’t have to be that way. A good friend in an MS support group always reminds us to keep smiling and laughing. I think he’s right. I wanted to write this article for the Denise in all of us. Sure, it’s scary at first, but with a smile on our face I think we can all see MS for what it is: a disease we are committed to curing. MS will not be around forever, but there will always be cheap Cabernet. Danielle “Syrah” English lives in San Rafael and works for a public relations agency. She and her sister “Chardonnay” founded chicklitandwine. com in 2010. She has volunteered with National MS Society chapters across the nation, and was diagnosed with MS in 2002.
WAYS TO GIVE
Help the National MS Society With a TaxFree Gift From Your Traditional or Roth IRA! The renewed legislation Congress enacted at the end of last year expires on December 31, 2011. This tax free option is available for individuals ages 70 ½ or older. Under the new law, you can use IRA funds to make charitable gifts without tax implications. If you are required to withdraw minimum distributions from your IRA and you do not need the money for personal use, consider giving part or all of it to the National MS Society simply by completing a new beneficiary designation form. Although you will not be able to claim a charitable deduction for the IRA gift, you will not pay income tax on the amount withdrawn. You may contribute funds through the IRA gift provision through the end of 2011 if: • You are 70 ½ or older at the time of the gift. • Your IRA gifts total $100,000 or less. • You transfer the gifts outright to the National MS Society. (This excludes gifts made to charitable trusts, donor advised funds, gift annuities and supporting organizations.) • Your gift is completed by the end of 2011. Be sure to contact your tax professional or your IRA administrator if you are considering a gift under the new law.
We Need Your Personal Stories Continued from page 3
In order to assure AB 310’s passage by the Legislature, we need your help. We know that four of the MS disease modifying therapies are routinely placed on “specialty tiers” by insurance companies and health plans and require patients to pay a co-insurance which can cost them hundreds, if not thousands, of dollars per month. If you are one of these people that have been burdened by high co-pays for your prescription drugs, we want to hear from you. Please take a few minutes to answer the following questions: 1. How much do you pay out-of-pocket for your MS drugs? 2. Have you always paid this amount or have your out-of-pocket costs increased? 3. Have the out-of-pocket costs for your prescription drugs affected you in any way? If so, how? 4. What city do you live in? 5. What is your insurance carrier? Is it a health maintenance organization or a PPO? 6. Is there anything else you want to tell us about the high out-of-pocket costs of your prescription drugs? Please send your stories to Stewart Ferry, Public Policy Director at Stewart.Ferry@nmss.org.
For more information or to discuss other YearEnd Gift Giving ideas, please contact Don Hall, Director of Donor Relations, at 415-230-6678 ext. 73015 or don.hall@nmss.org. TOLL FREE NUMBER 1 800 344 4867
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EVENTS
Bike MS: Waves to Wine Ride Bike MS: Waves to Wine Ride 2011 was a huge success! We had over 2,000 cyclists on the road and raised $2,060,000, money that will fund groundbreaking research and innovative programs and services for the 84,000 Northern Californians affected by MS. It was a great weekend with perfect weather. Thank you to our cyclists, 400+ volunteers, and sponsors who helped make Bike MS: Waves to Wine Ride 2011 such a success! Bike MS: Waves to Wine Ride 2012 will be held on September 22 & 23, 2012. Register today as a cyclist or volunteer at www.wavestowine.org.
2011 top fundraisers
Thank you to our sponsors!
Top Teams 1. Team Menstrual Cycles $102,101 2. Barreling Up the Coast $75,635 3. HP Tackles MS $66,781 4. Team Chevron $65,400 5. Salesforce.com & Friends $62,268 Top Individuals 1. David Patterson $40,805 2. Kate Aks $28,295 3. Thomas Galizia $16,960 4. Jay Thayer $14,005 5. Randi Bethel $11,898 Friends & Family and Corporate Cup Challenges Friends & Family Cup Team Menstrual Cycles $102,101 Corporate Cup Professional Services Deloitte Difference $54,607 Financial Services Team Schwab $31,052 Technology HP Tackles MS $66,781 Healthcare/Life Sciences Team Double Strand $58,533 6 | JOIN THE MOVEMENT: nationalMSsociety.org
Waste Management Sonoma Mountain Village Teva Neuroscience Bayer Healthcare Charles Schwab High Tech Burrito
RESEARCH
North American Education Program: Progressive MS
This year’s North American Education Program (NAEP) focuses on the research efforts for progressive multiple sclerosis. Northern California Chapter Self-Help Groups invite you to join them for a viewing of a DVD produced by the National MS Society and the Multiple Sclerosis Society of Canada. This program highlights the different areas of research in progressive MS, the challenges to researchers, and new and exciting ways that researchers are studying progressive MS. Following are the NAEP presentations in your local area, which will be shown at Self-Help Group meetings. These presentations are open to anyone living with MS or affected by MS. To register for one of these programs please call us at 800-344-4867 or register online at www.nationalMSsociety.org/can.
January Concord Saturday, January 14 1:00-2:00 PM
Berkeley Saturday, January 28 2:00-3:00 PM
Yuba City Wednesday, February 15 6:00-8:00 PM
February
Sonora Saturday, February 18 1:00–3:00 PM
Santa Clara Tuesday, January 17 7:00-9:00 pm
San Francisco Saturday, February 4 1:00-2:00 PM
Modesto Saturday, January 21 10:00–12:00 PM
Merced Saturday, February 4 11:00 AM–2:00 pm
Corte Madera Saturday, January 21 12:00-1:30 PM
Eureka Saturday, February 4 10:00 AM-12:30 PM
Capitola Saturday, January 21 10:30 AM-12:30 PM
San Jose Thursday, February 9 11:30 AM-1:00 pm
Vacaville Saturday, March 10 10:00 AM-12:00 PM
Oakland Saturday, January 21 12:00-1:00 PM
Fremont Saturday, February 11 12:30-1:30 PM
Albany/El Cerrito Wednesday, March 14 12:00-1:00 PM
Santa Rosa Saturday, January 28 1:00-3:00PM
Foster City Saturday, February 11 10:00 AM-12:00 pm
Palo Alto Monday, February 27 7:00-9:00 PM
March Stockton Saturday, March 10 10:00 am–12:00 PM
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LIVING WITH MS
Preparing for pregnancy
Meds, pregnancy and MS None of the disease-modifying drugs (DMDs) are approved for use during pregnancy, and most should not be taken for a few months beforehand. “The risk time is when you’re attempting to conceive,” noted Dr. Green. Plan a discussion with your neurologist about when to stop DMDs—and when, after delivery, to begin them again. “Until recently, most studies were neutral about whether breastfeeding was protective in preventing relapses,” says Dr. Green. “But a new study quotes a beneficial effect on relapse. People with non-aggressive disease may be able to wait to resume DMDs, which can’t be taken while nursing.”
Julie Hammond, diagnosed with MS in 2002, with son Travis. Courtesy of Greater New England Chapter.
The good news about planning a pregnancy when you have MS is that there’s no evidence that MS has any effect on fertility; pregnancy usually reduces exacerbations (although flares do tend to increase postpartum); and good outcomes are the norm. Nevertheless, making the decision to get pregnant can be complicated, primarily because of the physical challenges of MS, says Barbara Green, MD, director of the West County MS Center, St. Louis. “I also suggest women think about and discuss with their partners the emotional and financial challenges of raising a child, which could affect work and managing the disease.” 12 |
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Include any symptom-management medications in the discussion with your doctor. From bladder problems to fatigue, pregnancy can make MS symptoms worse, yet many meds are not safe for pregnant women. “We advise people on non-pharmaceutical approaches: getting enough sleep, adjusting work schedules and exercising,” says Dr. Green. “Symptoms during pregnancy are probably not MS—tiredness doesn’t mean your symptoms are coming back,” says Eileen Davis, APN, who has worked with people with MS for 12 years in New Jersey and New York. Keep exercising, she recommends, “so you aren’t carrying unnecessary weight postpregnancy, which can affect symptoms such as falling.”
LIVING WITH MS
Connect the team Connect your obstetrician and neurologist to coordinate your care. Visit www. nationalMSsociety.org/pregnancy for “Pregnancy, Delivery and the Post-Partum Period” to share with health-care professionals. If anesthesia is part of your birth plan, arrange a meeting with the anesthesia team. All forms of anesthesia are considered safe for women with MS. Don’t wait to plan for what happens after delivery. Tap family and friends about helping with housework, food and, of course, watching the baby!
Resources on MS and pregnancy Check out the Society’s collection of videos, books, booklets and Web pages that you can download, or call us for free print copies. www.nationalMSsociety.org/ pregnancy “MS and Starting a Family”—Momentum, Winter 2010-2011 www.nationalMSsociety.org/ Momentum (click “Back Issues”). Kara’s Story – Part I www.youtube.com/watch?v=F1heWHC7jI The National MS Society follows Kara from her first trimester… Kara’s Story – Part II www.youtube.com/watch?v=npgN99 NeD1k&feature=channel …all the way through to the birth of her baby boy.
Knowledge Is Power is a six-week, free, at-home educational program for people who are newly diagnosed. Mail or email formats. To register, call 1-800-344-4867, or visit www.nationalMSsociety.org/knowledge.
The MS Daily Minute www.nationalMSsociety.org/ dailyminute Sixty-second videos packed with information on • Beginning MS Therapy after Pregnancy • Relapses During Pregnancy • Breastfeeding with MS
Join the Movement®
• Support During and After the Pregnancy
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RESEARCH
52 MS genes identified
what causes MS and improve treatments. The Society is funding a second large study to confirm and expand these results.
New MS therapy moves forward
In the largest MS genetics study ever, researchers have documented 29 new genetic variants associated with MS, and confirmed 23 others previously implicated in the disease. Most of the genes were related to immune function, and more than a third have already been linked to autoimmune diseases. A large number were related to T-cell function; T cells, a type of white blood cell, play a major role in the immune system’s attack against the nervous system in MS. Also, two genes linked to vitamin D were found: research increasingly suggests that low vitamin D levels are a risk factor for developing MS. (The Society is funding a new clinical trial of vitamin D supplementation.) The study, a collaboration between the International MS Genetics Consortium and the Wellcome Trust Case Control Consortium 2, was published in the August 11, 2011, issue of Nature, and involved nearly 10,000 people with MS and more than 17,000 who do not have the disease. While the results of genetics studies haven’t so far resulted in the ability to do individual genetic counseling, these and further findings should help uncover 14
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The first phase III study of alemtuzumab (proposed brand name Lemtrada) for relapsing-remitting MS found that the drug met one of two primary endpoints. Researchers found that people treated with the drug had 55% fewer relapses over two years compared to those taking the interferon Rebif. However, results of the trial’s other goal, to delay disability, were not statistically better than Rebif. The study, called CARE-MS I, involved 581 people with relapsing-remitting MS. Another trial, called CARE-MS II, is still underway. Alemtuzumab is a monoclonal antibody that attacks the cells in the immune system that contribute to myelin damage. It is presently approved by the FDA to treat B-cell chronic lymphocytic leukemia. Sanofi and Genzyme, the drug’s sponsor, plan to seek approval of this intravenous drug for MS in the U.S. in early 2012. In June 2010, the FDA designated alemtuzumab a “Fast Track Product,” which should expedite its future review after results of the phase III trials are submitted.
Bone health may begin early People with MS have long been known to be at risk for bone loss, but a study published in the July 12, 2011, issue of Neurology suggests that it can occur very early, even before MS has been diagnosed.
RESEARCH
According to the study, low bone mass is more widespread among people newly diagnosed with MS, or those with clinically isolated syndrome (or CIS, a single episode of MS-like symptoms), than among people without MS. Study researchers measured bone density in 99 people newly diagnosed with MS or CIS, compared to 159 people without MS. More than half of the people with MS or CIS had low bone mass, compared to 37% of controls. Previously, scientists had speculated that people with MS are at greater risk of low bone density and broken bones due to factors such as lack of exercise stemming from mobility issues, medications or low levels of vitamin D (which plays a significant role in building bone). The researchers suggested that even early in MS, people should pay attention to good bone health by getting adequate vitamin D and calcium, as well as by performing weight-bearing activities. For more ideas on promoting bone health, go to www. nationalMSsociety.org and search for “You Can Build Healthier Bones.”
$16 million launched to support 32 new MS research projects Continued from Cover
Jonah Chan, PhD, Associate Professor of Neurology at University of California San Francisco and also a member of the Northern California Chapter Board of Trustees, recently received a grant of $680,625 to use advanced technology to understand how myelin forms and for clues to its repair. Multiple sclerosis involves an immune attack against myelin, the substance that surrounds nerve fibers. When myelin is damaged, nerve fibers fail to conduct impulses properly, leading to neurological symptoms. Nerve fibers are damaged as well in the attack, leading to disability. It is extremely important to broaden our understanding of how myelin develops and is formed, in order to decipher potential therapeutic targets for myelin repair. Dr. Chan and colleagues have shown that signals from myelin proteins can determine how myelin wraps around the nerve fiber. His team is using advanced technology to study how this occurs, such as nerve fibers engineered in the laboratory and advanced imaging capable of providing great structural details of these tiny proteins. Understanding myelin formation can yield vital clues to ways to stimulate myelin repair to restore function to people with MS. The National MS Society is committed to significantly improving the world for people affected by MS in the year 2015. To learn more about the Society’s 2011-2015 strategic response and the latest on MS research, please visit www.nationalMSsociety.org. TOLL FREE NUMBER 1 800 344 4867
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Northern California Chapter 1700 Owens Street, Suite 190 San Francisco, CA 94158
Emotional Wellness Monthly Teleseries We are excited to present an on-going Emotional Wellness Teleseries with a new topic offered every month. Life Coach and Psychotherapist Catherine Freemire, LCSW leads the discussion on these exciting upcoming topics. Please note: each monthly topic has two separate call times and dates, allowing you to choose a time and date which works best for your schedule. Each monthly topic call is exactly the same, so you only need to register for one time/date per topic. For more information and to register for any or all portions of this teleconference, please call 800-344-4867 or visit us online at www.nationalMSsociety.org/can. Calls are open to anyone interested in attending. Creating a Balanced Life Tuesday, January 10, 3:00-4:00 PM OR Tuesday, January 17, 12:00-1:00 PM Addressing Unfinished Business Tuesday, February 14, 2:00-3:00 PM OR Tuesday, February 21, 12:00-1:00 PM Finding Inspiration and Motivation Tuesday, March 13, 2:00-3:00 PM OR Tuesday, March 20, 12:00-1:00 PM