MS Connection Late Summer
NORTHERN CALIFORNIA CHAPTER MOVING TOWARD A WORLD FREE OF MS | LATE SUMMER 2010 CONSIDER THE GARDEN by Kimberly Childers With the late rains in May, the air has been perfectly clear in the mornings. This is when people living with MS should be out in the garden. The early morning dew-quenched garden or the big moonlit night works for me and provides an opportunity to work in the garden, but not suffer through the summer heat. Gardening is delicious therapy for people living with MS, and well, for everyone. There are potagers (French kitchen gardens) to tend and giant terra cotta renderings of culinary herbs, which in their own right are indeed medicinal. If you don’t have a pot of aromatic basil to delight your tomatoes or fill your blender with rich, green pesto, it’s time to get to the nursery and bring some plants home! I always call the nurseries ahead of time and arrange for my “pick up”. The smaller nurseries will come to your car and deliver your selections if mobility is an issue, and I tend to frequent the smaller nurseries for that reason. Although if they had the staff, I bet places like Home Depot would come to your car and deliver your selections as well. A good nursery will offer advice and answer your questions and I have found that they love to help. Look online or in the phone book for nurseries in your area and by all means, get into your garden! FAMILY FUN, COURTESY OF THE NORTHERN CALIFORNIA CHAPTER! The Family Recreation and Support program provides one-time awards to families, ensuring that the high costs of MS do not pose a barrier to the quality of life for children living in families who experience MS. Examples may include helping send a family on a weekend outing to a sporting event, paying for school pictures, back to school clothes and supplies, school uniforms, camp fees, driving lessons, Little League fees, etc. Limit: $400 annually. If you are interested in learning more about the program, please call Jacki at 800.344.4867, option 2, ext. 73002 SACRAMENTO OFFICE HAS MOVED! The Sacramento office of the National MS Society, Northern California Chapter has moved. Our new address is: 4221 Northgate Blvd, Suite #4 Sacramento, CA 95834 Phone numbers have remained the same. If you have any questions, please call 800-3444867 or 916-927-8000. MS CONNECTION LATE SUMMER 2010 National MS Society Northern California Chapter 1700 Owens Street, Suite 190 San Francisco, CA 94158 415-230-6677 | 800-344-4867 Chairman • Thomas Galizia Newsletter Editor • Jennifer 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 2 | JOIN THE MOVEMENT: nationalMSsociety.org BOARD OF TRUSTEES Board Officers Thomas M. Galizia, Chair Deloitte Consulting Angela E. Lai, Secretary Wells Fargo Private Client Services David Larson, Treasurer Piedmont Grocery 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 Oracle 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 Mauldin Doug Richardson, Program Chair John A. Schafer, MD Mercy Medical Group Dan Stokes JStokes & Associates Emeritus Board Members David Korn Fillmore Marks Gary Ryness The Ryness Company VOLUNTEER VOLUNTEER TODAY AND JOIN THE MOVEMENT! Looking to make a difference? Change a corner of the world? We have a job for you! VOLUNTEER today and join the movement. Last year, with amazing volunteer support and record rider participation, Bike MS: Waves to Wine raised $1,834,000 to fund groundbreaking research, innovative programs and services, pilot advocacy efforts at the local, state, and national levels, and fund direct financial assistance for people living with MS in Northern California. This year, we’re setting our sights even higher—and we want you to join us. Bike MS Waves to Wine Ride is on September 25th and 26th, and registration is live for various volunteer positions. Whether you want to hand out water, drive a support vehicle, or just cheer on the cyclists as they ride towards a cure—we want to have your company. If you volunteer for a shift on both Saturday and Sunday, we will provide you a tent in Team Tent Village so you can camp out with your friends. If you have any questions, please contact Shannon— • Online registration: wavestowine.org We are happy to work with you to facilitate school groups, corporate team-building, family weekends, or your own personal way to give back. A CLINICAL RESEARCH STUDY FOR AN INVESTIGATIONAL ORAL MEDICATION A worldwide team of researchers are evaluating an investigational oral medication for relapsing forms of MS (RMS). Other currently marketed treatments for RMS require injection. The study will assess the safety and effectiveness of an investigational study medication versus placebo (an inactive substance which contains no active medication) in people ages 18-55 with RMS. The investigational medication used in this study is called teriflunomide (ter-i-flün-o-mïde). It is derived from leflunomide (le-flü-no-mïde), also known as Arava®. Arava® is already approved in many countries for the treatment of rheumatoid arthritis, another autoimmune disease. About 1110 people will participate in this study at approximately 200 research centers throughout the world. To see if you qualify, go to www.tower3.msstudies.com or call 1-866565-0245. • Call with questions: 800-344-4867, option 2, ask for Shannon. • Email with questions or to set up a group: email@example.com TOLL FREE NUMBER 1 800 344 4867 | 3 LIVING WITH MS A WHEELCHAIR AT THE AIRPORT? YOU BET! BY SUZANNE BRATCHER As I walked through the airport, I found myself moving more and more slowly. No matter how hard I pushed myself, I couldn’t pick up the pace. As I became increasingly frustrated, I realized I wasn’t limping at all: my right leg was dragging. My left leg was doing all the work, and only the bag rolling on my right was keeping me from falling over. I made that flight—just before the gate agent closed the door. As soon as I got home, I went to see my doctor a third time and insisted she find out what was going on with my leg. Two more doctors, a physical therapist and an MRI later, I had my diagnosis: secondary-progressive MS. Airports (or at least the ones I know) don’t feature on-staff neurologists or MRI machines. But yet, the Phoenix airport was where I discovered I had MS. I had been limping for a couple of years, which my doctor had chalked up to overuse and sciatica. In March 2007, my experience at the airport gave me the push I needed to investigate what, exactly, was wrong with my right leg. That spring my daughter and I were planning her wedding long distance. I was on my way home and sitting at the gate when they announced our terminal had been changed. I’m an experienced hiker with seven trips into the Grand Canyon, so that little walk didn’t sound like much. But when I stood up, I felt like I was midpoint on the Bright Angel Trail, climbing out of the Canyon. 4 | JOIN THE MOVEMENT: nationalMSsociety.org Three years later, I’m still walking. These days I use two hiking poles to keep my balance and compensate for the right leg that still drags. I don’t own a wheelchair (yet), and I don’t use them in stores. Airports, however, are a different matter. These days air travel depends on physical stamina, excellent balance and the ability to walk quickly. A wheelchair actually allows me to focus less on my MS in an airport. Then there are the perks: getting through security more easily, being seated first on the airplane and meeting the interesting, courageous folks who push those wheelchairs. For my money, it’s the only way to fly! Suzanne Bratcher currently lives in Guam. For more on traveling with MS, visit our “Travel and Recreation” page at nationalMSsociety.org/travel. NEWS THE SOCIETY RESPONDS TO CCSVI FINDINGS with an endovascular surgical procedure. On April 14, at a Web forum jointly sponsored by the Society and the American Academy of Neurology, four experts discussed recent findings that suggest chronic cerebrospinal venous insufficiency, or CCSVI, a blockage in blood drainage from the brain and spinal cord, may contribute to nervous system damage in MS. The Society is funding expanded research on CCSVI in MS. Visit nationalMSsociety .org/ccsvi to learn about new CCSVI research projects announced on June 11. Dr. Robert Zivadinov of the University at Buffalo, State University of New York, stressed the need for further clinical studies to confirm that CCSVI is associated with MS and to understand how it might be involved. In a special webcast, MS experts discuss the latest in MS research and treatment at nationalMSsociety.org/ june30webcast. Dr. Paolo Zamboni of the University of Ferrara in Italy, who initiated the CCSVI hypothesis with a small study in 2009, also recommended controlled studies to determine the role of CCSVI in MS, and whether it can be safely and effectively treated Other participants included Dr. Andrew Common, radiologist in chief at St. Michael’s Hospital, University of Toronto, and Dr. Aaron Miller, medical director of the MS Center at Mount Sinai Medical Center and chief medical officer for the Society. WHAT’S NEW IN MS RESEARCH AND TREATMENT The Society’s Dr. Patricia O’Looney leads a discussion with leading researchers on new oral treatments, infrequent-dose therapies, and current research in nervous system repair and protection and chronic cerebrospinal venous insufficiency (CCSVI). ADA CELEBRATES 20 The Americans with Disabilities Act (ADA), signed into law in July 1990, promised to change the landscape for citizens with disabilities. “But the ADA’s promise will be reached only if we remain committed to full implementation,” said David Chatel, the Society’s executive vice president of Advocacy. “We can best celebrate our progress by reaffirming our principles of equality and inclusion,” said Joyce Nelson, the Society’s president and CEO. Learn more! Visit nationalMSsociety.org/ADA. WELCOMES YOUR WORK MSWorld, the Society’s online partner, invites you to share your stories, poems and artwork, and to meet your peers through message boards and chat rooms. Membership in this global online community is free and confidential. Join today at msworld.org. TOLL FREE NUMBER 1 800 344 4867 | 5 RESEARCH STUDY MAY LEAD TO INDIVIDUALIZED TREATMENT if it will work,” said Dr. Steinman. The study was funded in part by the National MS Society. RESEARCH LOW-DOSE NALTREXONE For unclear reasons, a significant number of people with MS do not benefit from interferon MAY IMPROVE QUALITY therapy, but it can take months or even years OF LIFE to discover this. Since earlier treatment has been linked to better outcomes, being able to predict whether someone will respond to Most people with MS experience stress, at interferon could avert useless treatment and least sometimes. A recent pilot clinical trial potentially improve results. found that low-dose Naltrexone (LDN) may help. LDN is FDA-approved to treat opioid A study published in Nature Medicine (March and alcohol addiction. At significantly lower 28, 2010) points the way to an answer why doses, it has been prescribed as a treatment for some respond to treatment and others don’t. certain diseases, including MS. Dr. Lawrence Steinman of Stanford University and Dr. Chander Raman, of the University Up until now, there has been very little clinical of Alabama at Birmingham tested in mice study of LDN’s usefulness for people with their idea that response to interferon might MS. Dr. Bruce Cree, Dr. Douglas Goodin, and depend on which types of cytokines (immune colleagues at the MS Center, University of messengers) were leading immune attacks. California at San Francisco, conducted a study They found that interferon reduced MS-like of 60 people with MS. Participants received symptoms in mice whose experimental disease LDN for eight weeks and inactive placebos for had been produced by T helper 1 cells, but eight weeks with one week free of treatment in worsened disease when it was caused by T between. helper 17 cells. “Being able to predict The investigators found that The team then checked blood LDN significantly improved whether someone some measures of quality samples of 26 people with MS and found they could of life—specifically, mental will respond to differentiate between those health, pain and self-reported who did and didn’t respond to interferon could avert cognitive function. However, interferon, based on patterns useless treatment and they found no impact on of cytokines. such as fatigue, potentially improve symptoms bowel and bladder control, Larger studies will be needed results” sexual satisfaction or visual to confirm the study’s findings function. before they will be useful in the clinic. “The data provides a strong foundation for the possibility that we will be able to tell someone before starting treatment 6 | JOIN THE MOVEMENT: nationalMSsociety.org RESEARCH The investigators emphasized that the results did not support the use of LDN instead of proven MS treatments, but they do suggest that it may relieve certain MS symptoms, and that larger studies may be warranted. WHAT COMES FIRST— EPSTEIN-BARR OR MS? concluded that MS risk increases significantly following EBV infection. “From a practical point of view, preventing EBV infection is difficult,” Dr. Ascherio said. “Most people are exposed to it in childhood. We do know that people who have a stronger immune response to EBV are more likely to get MS. There’s also pretty strong evidence that being infected with EBV in the teens or later is a risk factor for MS.” Virtually all people with “There’s pretty strong The Harvard results were MS are also infected with evidence that being supported by a study in Epstein-Barr virus (EBV), but like the chicken and the infected with EBV in the Spain, where researchers at the Hospital Universitari egg, scientists did not know teens or later is a risk Vall d’Hebron, Barcelona, which came first. Two new reported that an immune factor for MS” studies are adding to an response to a protein increasing body of evidence associated with EBV was that shows a possible role for EBV, a herpes increased in people with MS compared with virus that can cause several disorders, in the siblings who did not have MS. [Multiple development of MS. Sclerosis 2010: 16(3):355-358] In the first study to look at whether EBV The study found that siblings showed signs infection preceded the clinical onset of MS, of having been infected with a number of Dr. Alberto Ascherio, of the Harvard School viruses. The only marked difference was their of Public Health, and colleagues showed that immune response to EBNA1, a viral protein in a sample of 305 people with MS found associated with EBV. These were significantly in U.S. military databases, an EBV-positive higher in people with MS compared to their blood test came before MS diagnosis. [Annals unaffected siblings. of Neurology, January 20, 2010] “The results strongly suggest that EBV infection increases More research is needed to find the MS risk,” said Dr. Ascherio. mechanisms underlying the connection between EBV and MS, and a way to put the At the start of the study, only 5% of the information to use. participants, including the control group, tested negative for EBV. None of the people who tested negative for EBV during the follow up developed MS. In contrast, 10 people who initially tested negative for EBV, but who acquired the virus during the follow up, developed MS. Dr. Ascherio and colleagues TOLL FREE NUMBER 1 800 344 4867 | 7 ADVOCACY SELF-ADVOCATE TOWARD A BETTER LIFE What does self-advocacy mean? In short, it means speaking up for yourself. It also means making informed decisions and taking responsibility for them. The Society’s SelfAdvocacy Toolkit at nationalMSsociety.org/ selfadvocacy can help you advocate for a better life: in the family, at work, in your community, at the doctor’s office and for health insurance. The right tools for the job The toolkit helps clarify what questions to ask and offers a framework for answering them. What should you do about a sudden increase in the co-pay for your medication? Should you disclose your MS to your employer? How can you improve communication with your spouse and children? For example, how can you get your kids talking to you after you tell them your diagnosis? “The Self-Advocacy Toolkit is ‘one-stop shopping’ for techniques to assess your situation, see reasonable solutions and come to a mutually agreeable result,” said Renee Vandlik, a Society senior manager for State and Local Government Relations. “It encourages individuals to identify a range of alternatives for meeting their needs.” Working it out The toolkit includes worksheets tailored to each significant area of life with MS: community, family, employment, medical care, Medicare, health insurance appeals, long-term care and Social Security Disability Insurance. Each worksheet provides a comprehensive, step-by-step approach to define the situation, consider a range of solutions and identify rights and responsibilities. The worksheets also offer sample situations and responses. Each worksheet can be used to organize thoughts and actions around effective selfadvocacy. You can keep track of tips and advice, do research on a particular issue and collect ideas for next steps. “We hope the worksheet will have a life beyond the particular issue you used it for by offering ideas for self-advocating in a range of life situations,” Vandlik said. Get your voice heard today and visit nationalmssociety.org/selfadvocacy. An activist meets with his legislator. 8 | JOIN THE MOVEMENT: nationalMSsociety.org MONEY MATTERS NEED HELP PAYING FOR MS DRUGS? Managing the costs of MS meds is a huge challenge, especially for people with no insurance or who are underinsured. But some help is available. Each disease-modifying drug manufacturer and many makers of medications that treat MS symptoms have Patient Assistance Programs (PAPs), which offer free or low-cost medications to those who qualify. Prescription drug discount programs can help as well. Ask your doctor if there is a generic version available for any prescription. Patience may be needed to get benefits, however. You can get support and information from the Society too. Visit nationalMSsociety.org/underinsured or call us at 1-800-344-4867. RESOURCE CENTERS â€” These centers can help with information, applications and exploring your options. Name NeedyMeds Partnership for Prescription Assistance RxAssist Website NeedyMeds.org pparx.org Phone Number (online service only) 888-477-2669 RxAssist.org 401-729-3284 For help in purchasing disease-modifying drugs Drug Name Avonex Betaseron Copaxone Extavia Novantrone Rebif Tysabri Resource MS Active Source BETA PLUS Patient Support Program Shared Solutions Extavia Patient Support Program Novantrone Patient Assistance Program MS Lifelines Access Made Simple MS Active Source Website msactivesource.com betaseron.com sharedsolutions.com No Web site No Web site mslifelines.com msactivesource.com Phone 800-456-2255 800-788-1467I 800-887-8100 866-925-2333 877-447-3243 877-447-3243 800-456-2255 For help in purchasing drugs that address MS symptoms Drug Ampyra (fampridine-SR) Baclofen (intrathecal only) Cymbalta (duloxetine HCI) Ditropan XL (oxybutynin chloride) Neurontin (gabapentin) Website No Web site at press time rarediseases.org/programs/medication lillycares.com jjpaf.org pfizerhelpfulanswers.com Phone Number 888-881-1918 800-999-6673 800-545-6962 800-652-6227 866-706-2400 Call an MS Navigatorâ„˘ at 1-800-344-4867 about other drugs or state-supported patient assistance programs. The information here is not guaranteed to be up to date as programs may change, but we hope this helps you get started. TOLL FREE NUMBER 1 800 344 4867 | 9 WAYS TO GIVE REMEMBER THE OCCASION WITH A GIFT BY SUSAN GOLDSMITH “I have everything a 40-year-old babe could want or need. I have wonderful family and friends who love me, so no gifts please. If you would like, please consider making a donation to the MS Society.” “My mother was diagnosed with MS 19 years ago. She continues to wage a courageous battle. There is a cure. It can be beaten. All it takes is funding.” “Since Jessica’s dad Bill will not be there to walk her down the aisle, Jessica and Rob would be honored by your donation to the National MS Society in his memory. With your help, our wedding could help some other little girl’s father be around to walk her down the aisle.” Honor a loved one or celebrate a special day with a gift that will make a difference for people living with MS. Creating a tribute or memorial fund to benefit the National MS Society can make your special occasion unforgettable. Here’s how to do it. Go to nationalMSsociety. org and click the “Donate” button to create a fundraising Web page. Personalize your page with photos and stories. Then e-mail invitations to friends and family to visit your page, make an online donation and sign the guestbook. It’s an easy and accessible way to remember a loved one, recognize an accomplishment or milestone or just to say thank you. People who have already set up Society pages left these inspiring messages: “Grandma Ann has always been giving to those around her. So, it is in this spirit of giving and nurturing that we ask you that in lieu of gifts for Ann’s 90th year, we’d like you to give a donation to MS in her honor!” 10 | JOIN THE MOVEMENT: nationalMSsociety.org Susan Goldsmith is the director of the Golden Circle program for the Society. Bike MS Waves to Wine Ride 2010 September 25-26, 2010 Are you up for the challenge and ready for the ride of your life? Enjoy six full meals, generous amenities, stocked rest stops every 12-15 miles, SAG vehicles, spirited festivities, a beer and wine garden, massage tent and more! Volunteers are also needed - please visit wavestowine.org for more information. Register today at wavestowine.org or 800-344-4867.