NORTHERN CALIFORNIA CHAPTER
MOVING TOWARD A WORLD FREE OF MS | WINTER 2010
TOM KUHN TO LEAD THE SOCIETY’S NATIONAL BOARD At the Leadership Meeting in Chicago this November, Tom Kuhn accepted the responsibility of being the Society’s top volunteer leader, as chair of the National Board of Directors. “Tom will see the organization through many coming changes,” said Joyce Nelson, the Society CEO, in welcoming the new leader. “As oral medications enter the marketplace, the world of MS stands to be transformed,” Kuhn said. “The Society must do all it can to ensure access to MS medications. The role of volunteers in this work can’t be overemphasized.”
WALK MS Register for Walk MS 2010 today! There are 11 walk sites across Northern California.
Kuhn, who is president of the Edison Electric Institute, a Washington consortium representing the nation’s electric power companies, exemplifies the skilled volunteer leadership to which he refers. He has served the Society as a National Board member since 1997 and is a longtime trustee and chair emeritus of the National Capital Chapter in Washington, D.C. He brings deep knowledge of marketplace economics and organizational dynamics to his newest responsibility. “I can’t think of anyone better positioned to help us move into the future,” said the outgoing chair, Weyman Johnson, who received heartfelt thanks from the Society for his impressive service to the MS community.
INSIDE THIS ISSUE
Can Do Program PAGE 4
Walk MS 2010 PAGE 8
Oral Meds for MS PAGE 15
Advocacy PAGE 6
MS CONNECTION WINTER 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 Chapter President • David Hartman 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 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 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 John N. Staples, III Evanston Partners Dan Stokes JStokes & Associates Emeritus Board Members Warren Berl David Korn Fillmore Marks Gary Ryness The Ryness Company
CHAPTER UPDATE The first part of 2010 has been eventful and exciting for the Northern California Chapter. We’re gearing up for Walk MS in April and have just returned from two successful advocacy conferences. MS Awareness Week was March 8-14 and the Northern California Chapter had a lot to celebrate. Advocacy We started the month in Washington DC at a public policy conference. Over 400 people from around the country joined forces in Washington DC to advocate on behalf of people living with MS. The Northern California Chapter representatives visited 10 key members of the California Congressional Delegation including several who are members of the MS Congressional Caucus. We enlisted the support of congressional members on behalf of our key policy objectives: - $15 million in funding for MS Research via the Department of Defense Congressionally Directed Medical Research Program - Establishment of the MS and Parkinson’s Disease Registry Act (H.R. 1362)
Conference was held March 16, 2010 in Sacramento. The California Neuro Alliance Conference brought together consumers, caregivers, staff, healthcare professionals, and people affected by neurological disorders. Conference attendees participated in advocacy training and, with other alliance members, visited assembly and senate members at the state capitol. There were 23 teams of 2-3 people, and each team made four visits. During these legislative visits, teams lobbied two main issues: AB 2170 (continuity of care for prescription drug coverage) and proposed cuts to In-Home Supportive Services (IHSS). Teams asked for assembly and senate members to support AB 2170 and oppose proposed cuts to IHSS. Our message reached the ears of many senate and assembly members and will go a long way toward shaping future legislative decisions affecting people living with MS. Please read more about the CalNeuro conference in this MS Connection. MS Awareness Week
California NeuroAlliance Conference
MS Awareness week was March 8-14. The Northern California Chapter encouraged everyone to “go orange” by organizing multiple events held across Northern California. Staff and volunteers hosted Wake Up and Walk mornings at coffee shops, set up booths at Farmers Markets and malls, attended a spin class at a San Francisco Crunch gym and encouraged everyone to wear orange on Friday. It was a time for staff, volunteers, clients, walkers and bikers alike to come together and raise awareness about MS. Thank you to everyone for participating and raising awareness about MS!
The 10th Annual California NeuroAlliance
- The Northern California Chapter
- Full Funding for the Lifespan Respite Care Act We lined up several co-sponsors for the Registry Act, moving toward our goal of 218 nationwide and closing in on 20 California Congressional members. Similarly we gained numbers in legislators agreeing to sign “Dear Colleague” letters from key congressional leaders supporting increased research funding and funding for Respite Programs.
TOLL FREE NUMBER 1 800 344 4867
3
PROGRAMS
CAN DO MULTIPLE SCLEROSIS’S CAN DO® PROGRAM LIVE YOUR BEST LIFE POSSIBLE WITH MS
Imagine a program dedicated exclusively to helping you live your best life possible with MS. A personal and powerful program that addresses your physical, emotional, social and intellectual needs. Imagine gaining the knowledge, skills, support and confidence to transform challenges into new possibilities. Can Do Multiple Sclerosis’s CAN DO® Program has facilitated these positive changes in thousands of people with MS and their support partners. The CAN DO Program will be held May 12-16, 2010 at the DoubleTree Hotel in Modesto, California. This five-day CAN DO Program will empower you and your support partner to take active charge of your MS and tailor lifestyle strategies to help you live full lives. Using a wide range of engaging, experiential and active-learning program elements, MS professionals address the whole person, whole health and whole community aspects of your MS. The program fee is $2,000 per couple. Need-based scholarships are available
4
JOIN THE MOVEMENT: nationalMSsociety.org
to cover the program fee, including all meals, program components and materials. One night of free lodging at the DoubleTree Hotel will be given to those that apply by March 24, 2010. The last day to apply for this CAN DO Program is Thursday, April 1, 2010. Apply online at www.mscando.org or call Can Do MS at 800-3673101 ext. 1276 to request an application. The Northern California Chapter is pleased to bring this innovative lifestyle empowerment program to our MS community. Can Do Multiple Sclerosis, formerly The Heuga Center for Multiple Sclerosis, is a national nonprofit and provides programs for people with MS and their support partners. The organization has helped thousands of people living with MS transform challenges into possibilities in health and life.
RESEARCH
UC DAVIS NEW INVESTIGATIONAL DRUG TREATMENT FINGOLIMOD FOR PRIMARY PROGRESSIVE MS 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.
WE’RE ON FACEBOOK!
TOLL FREE NUMBER 1 800 344 4867
5
ADVOCACY
MS-CAN SPONSORS LEGISLATION TO CURB OUT OF POCKET COSTS FOR PRESCRIPTION DRUGS Assemblymember Bonnie Lowenthal (D-Long Beach) has agreed to introduce a bill this year, AB 2170, that will prohibit insurance companies and health plans from increasing consumers’ out of pocket costs for their prescription drugs between open enrollment periods. The intent of the bill is to assure that once an enrollee signs a contract with an insurance company or health plan for health insurance, the company cannot raise the enrollee’s co-payment or co-insurance for his/her prescription drugs during that contract year. The objective of the bill is to ensure continuity of care and protect the consumer from unplanned out-of-pocket costs for prescription medications. Oftentimes, patients discover the change in out-of-pocket costs for their medications when refilling the prescription at the pharmacy, forcing them to either pay more out-of-pocket or switch drugs for reasons having nothing to do with their health. The increase in out-of-pocket costs that would be required in order to stay on the original medication may be unaffordable, affecting patient compliance.
6
JOIN THE MOVEMENT: nationalMSsociety.org
MS-CAN is sponsoring this legislation in conjunction with the California NeuroAlliance. MS-CAN has been working with many individuals from the MS Society and other organizations within the Cal NeuroAlliance to develop the proposal, draft a fact sheet, and engage Assemblymember Lowenthal. MS-CAN is very excited to have this opportunity to sponsor and shape such an important state policy. Over the coming months, MS-CAN will be asking its volunteers to take a major role in the advocacy efforts to get this bill passed, including visiting legislators and their staff in the district and in Sacramento, writing letters, testifying at committee hearings and gathering support from as many advocates and organizations as possible.
ADVOCACY
ADVOCACY
We Need Your Stories! For the purpose of proposed legislation AB 2170 we want to know: 1. When the increase occurred. Was it during the contract year (between open enrollment periods) with your health insurance plan or did it occur at the time of renewal of your insurance plan? 2. How much was the out of pocket cost increase? Did it double or triple? 3. If the increase occurred between open enrollment periods, how did you find out about the increase? Did the insurance company notify you or did you find out when you refilled your prescription at the pharmacy? Please submit your stories to Stewart Ferry, Public Policy Director at stewart.ferry@ nmss.org
CALIFORNIA NEURO-ALLIANCE CONFERENCE The 10th Annual California Neuro Alliance Conference was held March 16, 2010 in Sacramento. The California Neuro Alliance Conference brought together consumers, caregivers, staff, healthcare professionals, and people affected by neurological disorders. Conference attendees participated in advocacy training and, with other alliance members, visited assembly and senate members at the state capitol. There were 23 teams of 2-3 people, and each team made four visits. During these legislative visits, teams lobbied two main issues: • Support for AB 2170- Continuity of Care for Prescription Drug Coverage. AB 2170 would prohibit all group health insurance plans from increasing their enrollees’ out of pocket costs for their prescription drugs during the contract year. • Oppose the proposed cuts to In-Home Supportive Services (IHSS). Cuts to In-Home Supportive Services would eliminate all IHSS services for about 87% of recipients and reduce the state’s contribution to IHSS caregiver wages and benefits. For more information, please contact Stewart Ferry at 415-230-6678 ext. 73003 or stewart. ferry@nmss.org.
TOLL FREE NUMBER 1 800 344 4867
7
WALK MS 2010
WALK MS: IF NOT YOU, THEN WHO? We need you now more than ever. Walk MS is the rallying point of the MS movement, a community coming Northern together to raise funds California and celebrate hope 2010 for the future. We’re asking everyone to join the movement in 2010 and put an end to this devastating disease by walking, fundraising and spreading the word about Walk MS.
Walk with us April 2010. If not you, then who? Register today for Walk MS: Northern California. walk.MSconnection.org or 800.344.4867.
• Donate at walk.MSconnection.org and experience what happens when thousands of people who share our vision let the light of hope shine. • If you are unable to make it to your local walk, sign up to be a virtual walker. Raising funds just may lead to a breakthrough therapy. MS research is moving at record speed, but for the first time in more than 50 years, we can’t keep up. That’s why events like Walk MS are so critical- to fund research for a cure. Walk MS is a simple, but incredibly powerful way for the MS community to come together and be together. You are an important part of the Walk MS movement and when we come together, we make a bold statement: Together, we will achieve a world free of MS. We need your drive. We need your passion. We need you now.
8
JOIN THE MOVEMENT: nationalMSsociety.org
CALENDAR OF EVENTS Saturday, April 17th San Jose: Arena Green Rocklin/Roseville: Adventure Christian Church Eureka: Downtown Eureka Sunday, April 18th Santa Rosa: Druids Hall Sacramento: West Steps of the State Capitol Monterey Bay: Lover’s Point Park Walnut Creek: Heather Farm Park Saturday, April 24th Alameda: Crown Memorial Park Modesto: Downey Community Park Yuba City: Kingswood Park Sunday, April 25th San Francisco: Crissy Field
WALK MS 2010
Join Walk MS Today
We need you now, more than ever. • MS research is moving at record speed, but for the first time in more than 50 years, we can’t keep up. That’s why events like Walk MS are so critical - to fund research for a cure. • Just think, if people affected by MS don’t drive the movement forward, who will? • This year, we will call on everyone- especially people affected by MS- to join the movement. • We need your drive. We need your passion. We need you now. Walk with us in April 2010. If not you, then who? Register today for Walk MS: Northern California walk.msconnection.org 800.344.4867
TOLL FREE NUMBER 1 800 344 4867
9
WALK MS
SYSCO STOMPERS STOMP OUT MS! SYSCO TEAM SIGNS UP FOR WALK MS SACRAMENTO AND PLEDGES TO RAISE $5000 Ron Witt and Jennifer Peterson work together at Sysco in Sacramento. They have different backgrounds and different connections to MS, but one thing they do share is a desire to stomp out MS. Ron and Jennifer are co-captains of a team for Walk MS Sacramento, the “Sysco Stompers” and have pledged to fundraise $5000 to stomp out MS. Ron was diagnosed in April 2007 with relapsing, remitting MS. Shortly after diagnosis, Ron visited the Sacramento office of the National MS Society.
Ron Witt and his daughter, Courtney, who has raised $480 so far for the Sysco Stompers!
“[At the MS Society] I found someone who stopped what she was doing and spent the next two hours with me. This is where I began to understand that this was going to be a combined effort; in short it is a partnership with friends and family, doctors and the National MS Society.”
EXTREME MAKEOVER: HOME EDITION
Jennifer’s cousin Jillian Branagan was diagnosed with MS in October 2007. At the time Jill did not have health insurance and faced many obstacles in obtaining the best treatment. Her father contacted the National MS Society and almost instantly Jill was referred to a neurologist who specialized in MS and would fight the system to get Jill the best possible care. Jill is now living in a facility that specializes in MS and she receives three hours of therapy daily.
10 JOIN THE MOVEMENT: nationalMSsociety.org
The National MS Society, Northern California Chapter, is proud to nominate Nancy Jo Black and her family for Extreme Makeover: Home Edition on ABC. Nancy Jo has MS, and has had MS since she was very young, long before some of the disease modification drugs could help her. She and her family are experiencing the kind of financial strain many are in today’s economy, but they are determined to stay together and support each other through good times and bad. We hope to see the Black Family on Extreme Makeover: Home Edition very soon!
EVENTS
DUSKBUSTER 5K RUN/ 2 MILE WALK WEDNESDAY, JUNE 9TH, 2010 AT 7PM GOLDEN GATE PARK SOUTH TUNNEL OF POLO FIELDS SAN FRANCISCO FEE: $30 Starting at the South Tunnel of Polo Fields in San Francisco’s Golden Gate Park, this evening event is great for running teams and enthusiasts, casual joggers, walkers, families and more. We hope you’ll round up some friends, join us for the event and then party with us into the night at our fabulous post-party. In each of the first eight years that the DuskBuster was held (2002-2009), the event had 300-500 participants. Annual proceeds have grown from approximately $20,000 during the first year to over $80,000 in our most successful year. In 2010 we hope to have at least 600 participants and raise $100,000 for the cause. All proceeds raised by the MS DuskBuster will benefit the National MS Society, Northern California Chapter, and will be split equally to fund research to find a cure for MS and to pay for services and programs for the more than 12,500 Northern Californians with MS. Please contact DuskBuster@msconnection.org with questions.
ACCEPT THE CHALLENGE AN UNFORGETTABLE RIDE. AN UNBEATABLE DESTINATION. A WORLD FREE OF MS. September 25 & 26 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.
TOLL FREE NUMBER 1 800 344 4867 11
MONEY MATTERS
TAX TIME 2010 BY ELINOR NAUEN
Just having MS may feel like more than enough to deal with, but you have to pay taxes like everybody else. There is some good news: you can potentially reduce your tax bite. Learn all you can about the allowances available to people with disabilities. First off, every penny you spend out of pocket, beyond what’s reimbursed by your insurance, may add up to legal deductions. “Many things qualify as medical expenses,” said Trudy C. Durant, an accountant in New York and New Jersey: medical equipment; supplies; insurance premiums you pay yourself; transportation and lodging (but not meals) for medically essential trips — for both you and a companion; home attendants; and doctor-recommended programs such as weight
loss or smoking cessation. A physician’s letter is essential in case you’re audited. Home improvements that are primarily for medical care are also allowable. This would include air conditioners, a roll-in shower, a stair lift, and an elevator. There is a catch. You can deduct what you spend minus the amount that the improvement increases the value of your property. Let’s say you installed a $40,000 swimming pool. If it raises the value of your house by $10,000, you can deduct $30,000. Costs to remove a barrier, such as widening doorways to accommodate mobility aids, are also deductable. Spending the winter in Florida? Sorry, you’re out of luck. All these deductions kick in only after you’ve paid 7.5% of your adjusted gross income for medical expenses. So, for example, if your income was $50,000 a year, and you spent $6,000 on medical expenses, the first $3,750 is your responsibility. You can deduct $2,250 of your $6,000 expense. Your best bet is to keep really good records, group major expenses into one tax year if you can, and take the
12 JOIN THE MOVEMENT: nationalMSsociety.org
advice of a tax professional, including the IRS itself. “Use common sense. Some potential deductions haven’t been tested in the courts. You’ll have to decide if you want to chance having to fight for them,” Durant said. For more information log on to irs.gov or call the IRS’s toll-free number: 1-800829-1040. For those who qualify, the IRS’s Volunteer Income Tax Assistance (VITA) program—with offices in many convenient neighborhood locations— helps prepare basic tax returns. Call 800-829-1040.
RESEARCH
UNDERSTANDING “BENIGN MS” BY MARTHA KING In addition to labels like relapsing-remitting MS, secondary-progressive MS, primary-progressive MS, there is something labeled benign MS for people who live with MS for years without developing any disabilities at all. Like so much else in MS, no one understands why some MS is so mild. Even the proportion of people with benign MS is unclear. Estimates range from 5% to 40% in different studies, and some doctors have even called for a halt in the use of this term. Everyone agrees that benign describes the very mildest form of MS. These people have had enough neurological symptoms and MRI abnormalities to be diagnosed — but for the next 10 to 20 years, their physical disability is mild to nonexistent. The big catch Early on—which is the very best time to get on a disease-modifying drug—there is no way to predict who will have mild MS and who needs to start therapy as soon as possible. Teasing out the factors that distinguish the “benign” group from others would spare them from taking treatment they don’t need. The factors might also be clues to preventing more disabling MS. Researchers are eager to dig in.
assuming mild MS is truly benign.* MAGNIMS researchers found cognitive impairment in up to 45% of people who had been designated as “benign.” They concluded that testing to rule out cognitive problems is essential before a person is considered to have truly benign MS. The MAGNIMS team also saw some MRI abnormalities that suggested a future of worsening MS and they identified a connection between mild MS and a brain’s ability to compensate for damage by mobilizing other brain regions. In other words, some mild MS had caused real but hidden damage. The best idea for now The MAGNIMS analysis adds important insights into “benign MS” — and makes a clear case for further research involving large numbers of people with mild MS. Until more is known, the Society’s National Clinical Advisory Board recommends that treatment with one of the disease-modifying MS drugs be considered as soon as possible following a confirmed MS or CIS diagnosis. To learn more, visit the National MS Society Web site, nationalMSsociety.org and look for Benign MS in our Research/Clinical Updates.
Investigators in Europe are pooling their imaging expertise in an ongoing collaborative MS research project called MAGNIMS. A recent report from this project warns against
TOLL FREE NUMBER 1 800 344 4867 13
GET INVOLVED
LIVING WITH MS
D-EFICIENT? BY ELINOR NAUEN
For a number of years, scientists have been exploring the link between inadequate vitamin D intake and an increased risk for a number of chronic diseases, including multiple sclerosis.
of the American Medical Association, that found the risk of MS fell as blood levels of the vitamin rose. Current research hopes to determine if taking D supplements could be a factor in preventing MS altogether. Most people with MS— indeed, most Americans— have insufficient levels of D, which is also necessary for bone health. “That’s a strong rationale to provide supplementation,” Dr. Ascherio noted. “And it’s never too late to begin, but it’s certainly better to start earlier. Adolescence, when the risk of MS is low but is about to increase sharply, would be a good time to intervene.”
Low D = Higher risk of MS
Experts are also beginning to reconsider D’s use by people “What has changed in our with MS, especially as some understanding regarding vitamin D is that we now have early evidence suggests D might reduce relapses. data showing that low levels The Society’s scholarship program helps Whether D helps people who of vitamin D in healthy young highly-qualified students who have have MS is “very already adults predict a higher risk of been diagnosed with MS or who havetoaaddress without difficult developing MS,” said Alberto parent M.D., with MS achieve theiradreams of large controlled trial,” said Ascherio, DrPH, going to college. Dr. Ascherio. “There’s a lot professor of Epidemiology hope but it’s still an open and Nutrition, Harvard Scholarship of applications question.” School of Public Health, for 2010 will be and professor of Medicine, accepted between While waiting for answers… Harvard Medical School. October 1, 2009 and While further research 15, 2010. Dr. Ascherio was the January lead on the effects of D on the For guidelines and system in MS is in researcher of a large study, immune application information, published in the Journal Kayla Gutierrez, visit nationalMSsociety. 2009 Scholarship org/scholarships. Recipient 14 JOIN THE MOVEMENT: nationalMSsociety.org
progress, avoiding deficiency is certainly wise. “I think it’s a good idea for most people with MS to get their levels of vitamin D tested,” said Dr. Ascherio. “I’m not saying everyone should take supplements, but for several reasons, such as heat intolerance, people with MS often don’t get enough sunlight—the major source of D.” Other sources include fortified orange juice, cereals, dairy products, oily fish such as salmon and supplements. Discuss your particular circumstances with your health-care provider.
Stay in the loop Get the latest on MS news delivered to your inbox. Visit nationalMSsociety. org/signup to create a user profile and start receiving Society e-mails.
LIVING WITH MS
ORAL MEDS FOR MS ARE COMING BY GARY SULLIVAN
cells and B cells, both of which are thought to be involved in immune attacks in MS. These are just two of a number of experimental MS drugs that are soon to be making news. There are also the antiinflammatories: BG00012 (or BG-12), Laquinimod and Teriflunomide.
Ampyra™ (dalfampridine, formerly known as fampridine SR, from Acorda Therapeutics), which was approved by the U.S. FDA in January 2010 for its ability to improve walking in people with any type of MS, is now available by prescription. This is the first therapy specifically approved to treat a symptom of MS, and it represents a big step forward for the many people who may benefit. Cladribine, an oral diseasemodifying therapy for relapsing forms of MS, is also applying for marketing approval. A potent chemotherapy drug, Cladribine kills immune T
Fingolimod (or FTY720), an immunosuppressant, keeps harmful immune cells out of the brain and spinal cord where they can cause the damage seen in MS.
will be sent back to the drawing board. Minocycline, an antibiotic in pill form, is currently being studied in a phase III clinical trial—the last step before submission to the FDA for approval—but the study won’t be completed until at least late 2015. And FDA approval could take as long as six months to a year after that.
GET TO KNOW THEM BY NAME Atorvastatin (Lipitor)
All are taken as pills.
BG00012 (dimethyl fumarate)
For even more information about the oral MS drugs— including clinical trials that are currently recruiting participants—visit nationalMSsociety.org/news and type the name of a drug into the search field.
Cladribine
The time from here to there The era of the oral MS drugs is expected to begin this year. But that doesn’t mean that every drug being tested now will be available this year—or even next. And it’s always possible that a therapy, however promising,
Estriol Fampridine-SR Fingolimod (FTY720) Lamotrigine (Lamictal) Laquinimod Minocycline MN-166 Pioglitazone (Actos) Riluzole (Rilutek) SB-683699 Teriflunomide
TOLL FREE NUMBER 1 800 344 4867 15
ADVOCACY
SERVING ON A COMMISSION IN MY CITY: CITIZENSHIP CAN BE FUN BY AL TAINSKY
Every third Thursday of the month at 4:30 p.m., I’m at the Santa Monica Housing Commission meeting at the Ken Edwards Center on Fourth Street. I sit as one of seven commissioners who serve in an advisory capacity to the City Council and its staff. The city’s Department of Housing and Redevelopment is dedicated to preserving existing affordable housing and creating new housing opportunities for residents with low and moderate incomes. In short, the work is serious. Santa Monica, California, is an eight-square-mile city with a population of about 85,000. I became involved in city
government because I wrote a first-person piece for The Los Angeles Times that they titled, ”MS Can’t Cripple Art and Soul.” That was back in 1992. The article garnered a national writers award from the National MS Society and things started happening. I got a call from City Hall and a request that I sit on the city’s Accessibility Appeals Board. This led to a request that I sit on the Housing Commission. I’ve done so for the past eight years. They needed a commissioner who was a recipient of Section 8 housing and I fit the bill. In my town the Housing Commission is but one of many that study problems and make suggestions in their area of expertise. Some of the others are the Arts Commission, the Commission for the Senior Community, the Landmarks and Historic District Commission, the Recreation and Parks Commission, and so on. All are dedicated to the betterment of those who reside within the city borders and the food isn’t bad either. Not many cities I know of would dress the salad at their annual Commissions
16 JOIN THE MOVEMENT: nationalMSsociety.org
Dinner with walnuts and blue cheese. Santa Monica’s motto is, “Populas Felix in Urbe Felici,” which translates as, ”A Fortunate People in a Fortunate Land.” I can’t walk anymore but I can work to better my community. Concurrently, I’m having a blast. Did I mention that the generosity of spirit of the community is almost palpable? ‘Cause it is.
INTERESTED IN CONTRIBUTING TO YOUR OWN COMMUNITY? Consider networking with members of local boards and commissions. Make their acquaintance first at regularly scheduled public meetings. Observe hearings, and share outcomes with your network of friends. Not only will discussion be stimulating, but as an increasingly informed citizen — with knowledge of the impact of disability — you may ultimately be invited to serve. —Renee Vandlik, State and Local Government
WAYS TO GIVE
With our National MS Society Charitable Gift Annuity we fund medical research. We receive fixed payments for life and help scientists find a cure for MS. And it helps the MS community move forward.
Very little evidence exists to link mercury-containing amalgam JOIN THE MOVEMENT速 IN A POWERFUL WAY. dental fillings and MS. And to Contact Gillian Smith at 1-800-923-7723 | giftplanning@nmss.org have dental fillings removed or replaced is expensive. However, if you are worried about having new amalgam fillings, ask your dentist about alternatives, such as porcelain. Contact the Society and ask how your annuity can support MS research.
TOLL FREE NUMBER 1 800 344 4867 17