FALL 2012 NORTHERN CALIFORNIA CHAPTER
MS CONNECTION NEWSLETTER
INSIDE 07 THIS ISSUE
PROGRAMS IN YOUR COMMUNITY
12 AMERICAN ACADEMY OF NEUROLOGY MEETING
14 MEET OUR 2012 SCHOLARSHIP RECIPIENTS
15 NORTHERN CALIFORNIA CHAPTER ANNUAL MEETING
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MS CONNECTION: FALL 2012
LETTER FROM THE PRESIDENT
A NEW SEASON AND A RENEWED COMMITMENT “THE SOCIETY’S PROMISE AROUND RESEARCH IS CLEAR: STOP DISEASE PROGRESSION, RESTORE WHAT’S BEEN LOST, AND END MS FOREVER. ADDRESSING THE CHALLENGES OF EVERYONE AFFECTED BY MS REQUIRES A SIMILAR FOCUS AND PROMISE.”
CONNECT WITH US ONLINE: Northern California Chapter nationalmssociety.org/can can_info@nmss.org Like us: /msnortherncal Follow us: /msnortherncal On the Cover: Alexis, left, diagnosed in 2009
Along with cooler weather and back-to-school time, Fall also means a new fiscal year for the National MS Society. As we plan for fiscal year 2013, our continued focus on improving the lives of people affected by multiple sclerosis remains central in all that we do. The Society’s promise around research is clear: STOP disease progression, RESTORE what’s been lost, and END MS forever. Addressing the challenges of everyone affected by MS requires a similar focus - and promise. This encompasses many program areas and services across the organization, including advocacy, living well with MS, expanding awareness, ensuring accurate and robust information, social connections, and improved access and quality of treatment and care. In this newsletter, you will see ways in which the Northern California Chapter is addressing the challenges of everyone affected by MS: awarding scholarships to high school seniors (page 14), offering a variety of in-person programs, as well as those accessible from the comfort of home (page 7-12 & 15) and providing resources for families affected by MS (page 4-5). Thank you for your continued partnership as we work together to create a world free of MS. Sincerely,
Janelle Del Carlo Chapter President Northern California Chapter
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NATIONALMSSOCIETY.ORG | 1-800-344-4867
TELE-COUNSELING PROGRAM This exciting opportunity allows people living with MS to have 10 individualized counseling sessions by telephone with a licensed therapist, and is funded by the National MS Society. • Have you been thinking about talking with a licensed professional therapist who understands MS? • Have you been unsure how to find such a person, or unable to find someone in your area? • Have you been reluctant to seek counseling due to lack of finances or insurance? • Is transportation an issue for you in seeking this service? If you answered yes to any of these questions, you may qualify for our Tele-Counseling Program! Many people with MS have greatly benefited from receiving counseling from someone who understands the emotional challenges related to the disease. Improve your ability to cope with MS - with all of the comfort and ease of calling from your own home. Call Andrew Rose, Client Services Manager, today at 800-344-4867, option 2 ext. 73004, to complete an intake questionnaire.
NATIONAL MULTIPLE SCLEROSIS SOCIETY Northern California Chapter 1700 Owens Street, Suite 190 San Francisco, CA 94158 1-800-344-4867 Chairman: Angie Lai Chapter President: Janelle Del Carlo Editor: Jen Gainza © 2012 National Multiple Sclerosis Society, Northern California Chapter
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 Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The Society assumes no liability for the use or contents of any product or service mentioned.
04 NEWLY DIAGNOSED
HOW I COMMUNICATE ABOUT MS WITH MY CHILDREN BY JULIE STACHOWIAK, PhD
I have twin girls who are now six years old. I was diagnosed with multiple sclerosis a couple of years before they were born, so it has always been present in our little family. I guess there was never a question about whether or not to share my MS status with them — it was too big to hide. One of my first memories of the girls really understanding that I wasn’t entirely well was when I had been reduced to tears by some incident.
MS CONNECTION: FALL 2012
One of my small daughters came to where I was sitting on the ground with my head in my hands and adjusted my collar, saying, “Here you go, Mommy. I’ll take care of you.” The experts will tell you (and I can confirm) that young children pick up when a parent is not feeling well. Child psychologists will tell you that this can manifest as increased clinginess, regression in terms of speech or potty-training progress, or reversion to younger behavior (such as needing a pacifier). Older children may get worried that something terrible is happening — that their parent will die, that they will die, that they did something bad and whatever is going on is all their fault. This may turn into sleeping issues or nightmares, withdrawing emotionally, or acting out at school. Those same experts say that we should answer all questions about our MS honestly and directly, adjusting information as they get older. That might, or might not, work for you. I know that some people choose to keep their MS from their children until they reach a certain age or something happens where it must be revealed. These parents may feel they are protecting their children from the pervasive worry of having a sick parent. I think that it is an individual choice. We all have to make our own way as parents. I can’t tell you what to do — I cannot tell you that you must be open about your MS with your children.
JULIE STACHOWIAK WITH HER TWO DAUGHTERS
The only thing I can tell you with 100 percent clarity is that it is impossible to show your children too much love.
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NATIONALMSSOCIETY.ORG | 1-800-344-4867
As far as my situation goes, I have chosen to be very open with my daughters (in an ageappropriate way). I tell them when I am tired and I tell them when I feel better and I make sure that we do something fun and active during those times. We discuss MS and I have tried to explain to them what is happening in my brain. They know that I don’t like it when music is too loud or when we’ve been outside in the sun for too long.
AS FAR AS MY SITUATION GOES, I HAVE CHOSEN TO BE VERY OPEN WITH MY DAUGHTERS ... I TELL THEM WHEN I FEEL BETTER AND I MAKE SURE THAT WE DO SOMETHING FUN AND ACTIVE DURING THOSE TIMES. I won’t say that I have handled it perfectly. I have seen one of my daughters looking at me with a furrowed brow too many times, while the other one may come into my bedroom with “nightmares,” when I suspect she really just wants to check on me. However, I do think that they are considerate, gentle and compassionate. They seem slightly less self-centered than some of their classmates. They are not afraid of people who are different — we have friends with Down syndrome, who use wheelchairs and who are hooked up to oxygen. My girls don’t seem to see any of it, just the person whom they want to tell about their Halloween costume or their newest toy. I’m proud of that.
SOCIETY RESOURCES FOR FAMILIES The Society’s “Family Matters” Web page at www.nationalMSsociety.org/ Family Matters contains links to helpful brochures, programs and resources. Each issue of Keep S’myelin, a newsletter for children who have a parent with MS, has fun, engaging activities to help parents and children learn about and discuss MS together. Go to www.nationalMSsociety. org/keepsmyelin for back issues and subscription information. Search for and download Society brochures Plaintalk — A Booklet about MS for Families for information on talking about MS with family members and Someone You Know Has MS for children at www.nationalMSsociety.org. Join the online “Family Matters” community at www.MSconnection.org. Watch the Society video “Parenting with MS” at www.youtube.com/ watch?v=V93TG_0LJiA.
Diagnosed with MS in 2003, Julie Stachowiak, PhD, is the author of The Multiple Sclerosis Manifesto and www. ms.about.com. Originally published at www.blog.nationalMS society.org.
06 ACCESSIBLE FROM HOME EMOTIONAL WELLNESS TELESERIES A new topic is offered every month in our on-going Emotional Wellness Teleseries. 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. Calls are open to anyone interested in attending. The Healthy Benefits of Groups Tuesday, October 9, 2:00-3:00 PM PST or Tuesday, October 16, 12:00-1:00 PM PST Navigating the Holidays with Balance & Meaning Tuesday, November 6, 2:00-3:00 PM PST or Tuesday, November 13, 12:00-1:00 PM PST Understanding Forgiveness as a Choice Tuesday, December 4, 2:00-3:00 PM or Tuesday, December 11, 12:00-1:00 PM For call descriptions 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.
MS CONNECTION: FALL 2012
REGIONAL TELECONFERENCES Pre-registration is required for teleconferences. To register, please visit www. nationalMSsociety.org/can or call 800-3444867. MS & the Eye Thursday, October 4, 2012 6:30 – 7:30 PM PST Visual symptoms are common in people with MS — in fact they are the first symptoms for many people. Dr. Eugene May of Neuroophthalmic Consultants NW will discuss how MS affects vision and eye movement, and how ophthalmologists and neurologists evaluate and treat MS-related vision problems. An In-Depth Look at Progressive MS Thursday, December 6, 2012 6:30 – 7:30 PM PST Dr. James Bowen of Swedish Neuroscience Institute will address the issues of MS and aging, including age-related difficulties with the disability, relationship changes, cognitive changes, and effects on employment and Medicare. He’ll conclude with advice to help people remain optimally functional as they age. Save the Date! 2013 Regional Teleconferences: Complementary & Alternative Medicine and MS - February 7 Employment & Benefits - April 4 Sleep Management - June 6 Intimacy & Family Planning - August 1
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NATIONALMSSOCIETY.ORG | 1-800-344-4867
LEAVE A LEGACY AND PROVIDE FOR THE FUTURE OF THE NATIONAL MS SOCIETY
money market accounts.
JOIN THE LAWRY CIRCLE
• A charitable remainder trust is ideal for those who have appreciated securities that are no longer producing income. These trusts grow with the rising stock market, but still provide a guaranteed minimum income.
Multiple sclerosis stops people from moving. The National MS Society exists to make sure it doesn't. By planning a gift as part of your overall estate and financial plans you help ensure that our mission continues for years to come.
Please contact Don Hall, Director of Donor Relations, regarding questions or additional information at 415-230-6678 ext. 73015 or don.hall@nmss.org.
Your gift may be either designated as unrestricted or earmarked for a specific purpose, either of which will continue to provide support for the Society in perpetuity. To thank you for your thoughtful generosity, you will be recognized as a member of the Lawry Circle, a special group of 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. Helping The National MS Society can also provide benefits for you. As you reach retirement age, you may wish to find ways to help the Society that also provide tax benefits and maintain your investment income. • Gift annuities provide a guaranteed income at rates substantially higher than savings or
NORTHERN CALIFORNIA CHAPTER EARNS COVETED 4-STAR RATING FROM CHARITY NAVIGATOR The National MS Society, Northern California Chapter’s sound fiscal management practices and commitment to accountability and transparency have earned it a 4-star rating from Charity Navigator, America’s largest independent charity evaluator. Only 1 in 4 organizations receive this distinction. The Northern California Chapter’s rating and other information about charitable giving are available at www. charitynavigator.org.
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MS CONNECTION: FALL 2012
RESEARCH
NEW FINDINGS AT AAN MEETING BY MARCELLA DURAND
In April over 12,000 neurologists and researchers gathered in New Orleans to present the latest research in multiple sclerosis at the American Academy of Neurology’s annual meeting. Here are some highlights.
STOPPING MS A phase III trial of experimental oral therapy BG-12 found that the average annual relapses over two years in 1,430 people with relapsing-remitting MS was reduced by 44 to 51 percent over placebo. Disability progression was not reduced significantly. The most common adverse events reported were gastrointestinal events and reddening; a small study in 56 people taking BG12 found that pretreatment with aspirin reduced the latter. However, whether long-term use of aspirin in combination with BG-12 is effective and welltolerated has yet to be determined. Biogen Idec applied to the FDA in February 2012 for marketing approval of BG-12 to treat MS. In a phase III trial that compared intravenous alemtuzumab against standard dosing of Rebif (interferon
beta-1a), the relapse rate in 840 people with relapsing-remitting MS was reduced by 49 percent or the risk of disability progression reduced by 42 percent. Genzyme plans to file for FDA approval of alemtuzumab for MS in the second quarter of 2012. Results of a phase III trial of Gilenya (fingolimod) indicated that a daily dose reduced the relapse rate by 48 percent compared with placebo in 778 people with relapsing-remitting MS. Gilenya is the first oral disease modifier for MS to be approved by the FDA. First results from a clinical trial testing a combination of Copaxone and Avonex showed some evidence that they were better together than either therapy alone. However, the combination was not superior in reducing relapses or progression of the disease. In a separate study, researchers were able to identify gene signals in people who had participated in a clinical trial of Copaxone that could predict a high response from the therapy. This may point the way for future research on optimizing MS treatment choices. A study of a green tea extract called Polyphenon E given to 10 people with relapsing-remitting or secondary progressive MS found a 13 percent increase in average levels of a molecule that reflects nerve tissue integrity. The researchers are now conducting a phase II study to determine safety and neuroprotective effects in 48 people.
NATIONALMSSOCIETY.ORG | 1-800-344-4867
RESTORING WHAT’S LOST Researchers have found that blocking LINGO-1, a nervous system molecule, increases myelin repair in mice. The first human trial evaluated the safety of the approach in 42 people with relapsing or secondary-progressive MS. Researchers reported no serious adverse events and support moving this repair strategy to a phase II clinical trial. After a prominent food and wine critic with MS developed a decrease in taste, researchers at the Mount Sinai School of Medicine looked further into this lesser-known symptom of MS, called dysgeusia. In seven case reports of people with MS with dysgeusia, MRI revealed lesions in a small area of the brain stem. In some cases, loss of taste had been the first MS symptom, meaning it may be an important signal.
ENDING MS FOREVER In a study of 500 people with MS, researchers found that men with low vitamin D may be more susceptible to disability, while women with low levels of the vitamin had more brain lesions if they had a genetic marker common to people with MS. The study points to possible gene and gender influences in vitamin D levels and the risk of developing MS. For more AAN news, visit www. nationalMSsociety.org/research.
13 NORTHERN CALIFORNIA RESEARCH The Society has just committed to supporting up to 53 new research projects, training fellowships and special initiatives. Six Northern California researchers at UC San Francisco, UC Davis, and Stanford received $1.4 million in grants for the following research projects: • Studying how glucocorticoids, steroidlike drugs often used to treat acute MS attacks, may influence the repair of myelin. - Tracy Yuen, PhD, UC San Francisco • Training in how to design and conduct clinical trials to find better treatments for people with MS. - Sabeen Lulu, MBBS, UC San Francisco • Studying the extent that immune system cells known as B cells influence immune attacks that damage the nervous system in MS, for clues to improving therapy. - Ulf SchulzeTopphoff, UC San Francisco • Investigating how immune system cells are activated in a disease with some features similar to MS. - Michel VarrinDoyer, PhD, UC San Francisco • Investigating the therapeutic potential of using cells derived from adult skin to repair nerve-insulating myelin damaged during the course of MS. - Wenbin Deng, PhD, UC Davis • Identifying genes involved in the production of myelin to find new ways to repair damaged myelin in MS. - William Talbot, PhD, Stanford University
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MS CONNECTION: FALL 2012
MS SHOULDN’T STAND IN THE WAY OF AN EDUCATION
SCHOLARSHIPS
MS shouldn’t stand in the way of an education. This is why the National MS Society's scholarship program exists — to help highly qualified students who have been diagnosed with MS or who have a parent with MS achieve their dreams of going to college. This year the Northern California Chapter scholarship program has awarded 6 deserving students with scholarships. These awards ranged between $1,000 and $3,000. Recipients were selected based on academic performance, financial need, volunteer and extracurricular activities as well as the highly weighted essays they wrote about the impact MS has had on their lives. Stephen Eik of Santa Rosa, California is a senior at Maria Carrillo High School. Stephen plans on attending Cal Poly San Luis Obispo and majoring in Biology. Alyssa Mendoza of Oakley, California is a senior at Freedom High School. Alyssa plans on attending University of California Berkeley
and majoring in Political Science. Emily Strain of Redding, California is a senior at University Preparatory School. Emily plans on attending University of California Santa Cruz and majoring in Natural Resources Economics. Kyler Wood of Lodi, California is a senior at Tokay High School. Kyler plans on attending Pepperdine University and majoring in Mathematics Education. Max Kohl of Twain Harte, California is a senior at Summerville High School. Max plans on attending San Diego State University and majoring in Business Administration. Samuel Kohl of Twain Harte, California is a senior at Summerville High School. Samuel plans on attending California State University Chico and majoring in Music Industry Business & Technology. Applications for 2013 scholarships will be accepted (online only) between NEW STUDY BEGINNING 9 October 1, 2012 andOCTOBER January 15, 2013. For more information visit www. nationalMSsociety.org/scholarship or call us at 800-344-4867.
PROGRAM FOR
NATIONALMSSOCIETY.ORG | 1-800-344-4867
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STRESS AND PAIN MANAGEMENT
If pain and discomfort are symptoms that you experience, we invite you to contact the Northern California Chapter at 800344-4867 to see if you might be eligible to participate in this important study.
Stress, pain and discomfort are very common in MS. Some studies suggest that over 55% of people living with MS have “clinically significant pain.” Almost half (48%) were troubled by chronic pain.
SAVE THE DATE FOR THE NORTHERN CALIFORNIA CHAPTER ANNUAL MEETING
The National MS Society in conjunction with Rhoda Olkin, Ph.D., a Distinguished Professor at the California School of Professional Psychology and a nationally recognized researcher on disability, is conducting a study on the effectiveness of a self-paced internet education program, combined with a weekly group phone support session.
Sunday, November 4, 2012 Registration 12:00 PM Meeting 12:30 - 3:00 PM Four Points by Sheraton Pleasanton 5115 Hopyard Road Pleasanton, CA
This program provides education about different successful and well-researched non-medical pain management methods. Participants will be randomly placed in one of two seven-week groups. Participants must be willing to participate in pre and post research interviews. Dr. Pearl Werfel developed this program and will also facilitate the weekly phone groups. Dr. Werfel, a psychologist with over 25 years of experience, has expertise in living well with MS and anxiety, stress and pain management. Dr. Werfel is currently President of the San Francisco Psychological Association and also serves as a member of the Clinical Advisory Committee of the National Multiple Sclerosis Society, Northern California Chapter.
ANNUAL MEETING
Join us as we approve the slate of the 2013 Board of Trustees and celebrate a year of progress, and our 2012 fundraisers and volunteers who went above and beyond. Learn what new progress has been made in research and what it means for people currently living with MS. Panelists will not only cover clinical research, but discuss progress in other areas including mental health and physical rehabilitation. Pre-registration is required by Friday, October 26. To register and learn about pricing, please call 800-344-4867, or visit us online at www. nationalMSsociety.org/can.
Northern California Chapter 1700 Owens Street, Suite 190 San Francisco, CA 94158