MINNESOTA CHAPTER
MOVING TOWARD A WORLD FREE OF MS | WINTER 2010
The era of oral treatments begins Fingolimod is approved Sept. 22, 2010, the U.S. Food and Drug Administration (FDA) approved fingolimod capsules for reducing the frequency of multiple sclerosis attacks and delaying the accumulation of physical disabilities in people with relapsing forms of MS. This is a milestone in MS therapy. The new medication, under the brand name Gilenya™, is available as a “first line” treatment, meaning there are no recommendations for people to try other MS therapies before trying Gilenya. Gilenya is a new approach to controlling MS. It blocks receptors on some of the same T and B immune cells that have been implicated in causing MS damage. The drug causes some of these cells to remain in lymph nodes, stopping them from migrating into the brain or spinal cord.
A second MS oral medication is under review Last July, the FDA agreed to give “priority review” status to oral cladribine tablets with the hope of an approval decision before the end of the year. Cladribine is a chemotherapy drug used to kill T and B cells in the immune system and thus slow down the attack on myelin. The arrival of therapies that do not require regular injections greatly increases treatment options — especially for people who are not doing well on their current drug or who have a deep aversion to needles.
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INSIDE THIS ISSUE
Volunteers Page 6
Advocacy Page 9
Research Page 12
Events Page 16
612-335-7900 / 800-582-5296
Can you help us?
Publication of the National Multiple Sclerosis Society
If you’re able to make an in-kind donation to the Minnesota Chapter, contact Teri at 612-335-7925 or tcannon@MSsociety.org. To see the full in-kind list, visit MSsociety.org and click “Donate.”
Minnesota Chapter
Board Chair • Michael V. Schrock Chapter President • Holly Anderson Newsletter Editor • Anna Kucera E-mail • editor@MSsociety.org 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 all questions and information be discussed with a personal physician. The National Multiple Sclerosis Society mobilizes people and resources to drive research for a cure and to address the challenges of everyone affected by MS. © 2010 National Multiple Sclerosis Society, Minnesota Chapter
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Office/warehouse supplies
n 18-gallon
n Power pallet jack
n Nursing 2011
n Sound system
with speakers and wireless microphone
storage bins Drug Handbook
n CD player
Emergency care package items for a person with MS
n MP-3 player
n Regular-size bars
n Electronic readers
(Kindle, Nook)
n Flip video camcorder n Paper bags (for gift,
goodie bags)
n Tissue paper n Cards (get well,
sympathy)
n Personal paper
shredder
n Jump drives (portable
storage device)
of soap
n Laundry detergent n Toothbrushes and
toothpaste
n Full-size bottles
of shampoo and conditioner
n Metro Mobility
tickets
n Gift card for food/
daily living items (such as Cub or Target)
n Phone cards
Studies show that early and ongoing treatment with an FDA-approved therapy can reduce future disease activity and improve quality of life for many people with multiple sclerosis. The National MS Society’s medical advisors recommend that people with MS talk with their health care professionals about using these medications and about effective strategies and treatments to manage symptoms. If you or someone you know has MS, please visit nationalMSsociety.org or call 800-582-5296 to learn more.
LETTER NOTEFROM FROMTHE THEPRESIDENT BOARD
A world free of MS The theme of this winter’s MS Annual Convention is: “A world free of MS. Imagine yours.” So what does it look like? When I volunteered at our state fair booth this summer, we asked people to draw that Holly Anderson world. Some people drew President rainbows and sunny days. Others drew smiley faces or wrote a message for someone they love with MS. Others said they didn’t know what MS is, so how could they visualize a world without it? I told them about a person I know who has MS and about the uncertainty and unpredictability of the disease. “A world without MS is a happy place,” I said.
As we move toward these goals, we will continue to work to meet the needs of people with MS right here in our chapter area. With nearly 80 active clubs and groups, we’re able to offer programs across the state and support in your community. Our grant programs will continue to provide equipment, chore services, respite care and emergency help when it’s needed most.
I can’t think of a better world than one where no one has to hear the words, “You have MS.” Not ever. Where disease progression is stopped in everyone who has MS and where we’ve regained all that’s been lost. Lofty goals, yes, but I believe they’re achievable.
Research and programs are our map, or maybe in this day and age, our GPS, guiding us toward a world free of MS. Whatever it looks like to you, imagine that place in your mind. Draw it if you’d like. And in case you don’t have any crayons, I asked my 4-year-old, Adeyla, to draw it for you!
In 2010, the Minnesota Chapter was able to provide an additional $500,000 to MS research over and above our annual contribution. These dollars, thanks to the hard work of so many in our communities, will fund research projects to figure out how to stop MS, restore function and end the disease forever.
In addition, we’re growing our family and caregiver programs; and we’re working to bring research updates, face time with your neurologist, adult day programs and much more to your area. We also know we need to help bring more health care professionals specializing in MS to Minnesota and western Wisconsin and are developing strategies to make that happen.
TOLL-FREE NUMBER 800 344 4867
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NEWS BRIEFS
What’s on MS Connection Online right now? When you see this
icon, it means there’s expanded coverage online. Follow the instructions at the end of the article to find the extra information, or just browse the news section of our website. Visit MSsociety.org and click “MS Connection News” on the left-hand side. From there, sort by topic or date.
! w e n d n Bra
n Looking to connect to people in your community
affected by MS?
Consider joining an MS club or group. Lively discussions, valuable information, fun and friends await! Visit tinyurl.com/MNClubsGroups to find a club or group that’s right for you. n Inside the National MS Society
Get an insider’s perspective of the Society’s latest plans, projects and more. Visit tinyurl.com/InsideMSSociety to get the scoop on operations and upcoming programs.
MS Center at Opportunity Manor Offered in St. Cloud
A place to meet, socialize and grow. The National MS Society, Minnesota Chapter has teamed up with Opportunity Manor, Inc. to offer a brand new program for people living with MS. Scheduled for Tuesdays and Thursdays from 9:30 to 11:30 a.m., the new program is an opportunity for interaction, social activities, education seminars, exercise and fun. Tuesdays and Thursdays, 9:30-11:30 a.m. Opportunity Manor, Inc. 1908 Kruchten Court S., Sartell, MN 56377
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Reach your full potential! Meet others who share similar challenges while enjoying: n Social activities; n Educational programs; and n Exercise. For more information, contact Rhonda Sergeant with Opportunity Manor at 320-240-1900.
NEWS BRIEFS
Questions about health insurance changes? Health care reform is now law, so the name of the U.S. government’s official website has changed. Visit healthcare.gov for all the latest, most accurate information. A section on this site allows comparison shopping for health insurance. It links to what’s available in each state — private plans, public programs and community health services. Prices are posted as they’re set, so users should check back often for updates. If you currently have employer-based or individually purchased insurance that works for you, you don’t need to do anything. About 50 percent of Americans living with multiple sclerosis have this kind of coverage. The Affordable Care Act is designed to protect people from some potential insurance abuses. These changes are being called “The Patients’ Bill of Rights.”
As of Sept. 23*, all new or renewed job-based or private plans: n Cannot exclude your children under 19 because of disabilities or pre-existing conditions; n Cannot drop coverage because of high claims; n Cannot impose “lifetime” limits; and n Must allow your adult children to stay on your plan until age 26. *Please note that most job-based plans renew at the turn of the year, meaning these protections kick in Jan. 1, 2011, for most people.
Planning for 2011 As usual, people on Medicare can switch their plans between Nov. 15 and Dec. 31. Review your choices carefully. Government subsidies for continued on page 6
Join us at the MS Annual Convention Jan. 22, 2011 a world free of MS. IMAGINE YOURS. Multiple sclerosis is an unpredictable disease that affects no two people the same way. Each person touched by MS has his or her own unique story and perspective on our shared vision — a world free of MS. This year’s MS Annual Convention, Jan. 22, 2011, at the Hyatt Regency Hotel in Minneapolis, will highlight the many answers to the question:
What does a world free of MS look like to you? Hear from locally and internationally acclaimed MS expert Dr. Randall Schapiro about MS care. Visit the vendor exhibition area for tips and resources. Plus, attend the Minnesota Chapter’s annual meeting to see what progress we’ve made and what’s in store for the year ahead.
FOR MORE INFORMATION Visit MSsociety.org or contact Megan Sparks at 612-335-7955 or msparks@MSsociety.org. TOLL-FREE NUMBER 800 344 4867
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NEWS BRIEFS
Health Insurance Changes continued
Medicare Advantage plans are being reduced, and some of these insurers will respond by raising prices or limiting benefits. Traditional Medicare benefits are being increased, not limited. Mammograms, colon cancer screening, vaccinations and more will be covered in full with no co-pays or deductibles. If you don’t have insurance and have been uninsured for six months or more, Pre-existing Condition Insurance Plans are starting in every state, and no one can be refused coverage due to health conditions (though tax breaks don’t start until 2014).
Medicare Part D will be different The “doughnut hole” is still with us, but in 2011, name-brand drugs, including biologicals, will be offered at 50 percent off while the individual is in the gap. Generics may be even more steeply discounted. Check the list of covered drugs —the formulary — in any plan you’re considering. As before, drugs for MS symptom management prescribed “off label” won’t be discounted, but MS activists across the country are working hard to change this!
volunteers
Top volunteers will be recognized at our annual Sylvies awards banquet
The movement toward a world free of multiple sclerosis requires work — the dedication of time and talent from countless volunteers. In 2010, volunteers donated more than 50,000 hours of service to support programs, fundraising events, research and advocacy for people affected by MS. The Minnesota Chapter is proud to announce this year’s National Volunteer Hall of Fame Award Winners and the Minnesota Chapter Sylvies Volunteer Award Winners!
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Tom Holtackers, National Volunteer of the Year Tom Holtackers first volunteered with the National MS Society in 1979 — one year before he was diagnosed with MS. After receiving the news, he experienced pain, disappointment and fear. But over time, Holtackers transitioned from victim, to survivor, to conqueror. In the process, he embarked on a lifelong mission devoted to achieving a world free of MS. Holtackers’ 37-year career as a physical therapist gives him a unique perspective on living, working and thriving with MS; and he’s dedicated to sharing his knowledge. His involvement with the Society spans more than three decades. He’s an active volunteer and special events participant; and he serves on countless committees, including more than 20 years on the Minnesota Chapter Board of Trustees.
Bill MacNally, National Volunteer Hall of Fame – Advocacy Bill MacNally has been a champion for people with MS for 18 years. He’s a member of the National MS Society programs committee, local government relations and governance committees, serves on the Minnesota Chapter Board of Trustees and is a long-time supporter of programs and special events. MacNally received the Norman Cohn Hope Award
in 2007 — the Minnesota Chapter’s highest award for volunteers. He was also recognized with a Minneapolis St. Paul Magazine volunteer award in 2008.
Dr. Gary Birnbaum, National Volunteer Hall of Fame – Health Professionals Dr. Gary Birnbaum is a neurologist at the Minneapolis Clinic of Neurology, where he is director of the MS Treatment and Research Center. He’s an active clinician and researcher who strives daily to meet the medical needs of people affected by MS. Dr. Birnbaum has been a member of the Minnesota Chapter Board of Trustees for 32 years and regularly donates his time and expertise to speak at public and professional education programs.
David Chaikin, National Volunteer Hall of Fame – Programs and Services David Chaikin, a former Marine, was diagnosed with MS in 1992. Over time, the disease has made it difficult for him to use his legs, arms and voice. “It can be hard sometimes,” says Chaikin. “But what’s the alternative? Quit? Give up? I don’t think so!” Chaikin, who is also this year’s recipient of the Norman Cohn Hope Award, is committed to building momentum in the MS movement by volunteering hundreds of hours to MS Society programs each year. TOLL-FREE NUMBER 800 344 4867
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Norman Cohn Hope Award David Chaikin Activist Volunteer All Stars Patti Berger Elizabeth Carlson Dan Rude Chapter Volunteer All Stars Mick Auger Katy Hunchis-Holden Dale Tennison Rookie Volunteer All Stars Bruce Gunderson Phil MacEachern Cindy Machus
Office Volunteer All Stars Trish Ganyaw Ron Mans Diane Whitcraft Leadership Volunteer All Stars Mike Schrock Devon Washington Group Volunteer All Stars Bike MS: MS 150 Ride “Hinckley Hilton� Team (lead by Reggie Walton) City of Wadena Clubs and Groups Area Coordinators
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Corporate Star Cub Volunteers are key partners in the movement to end MS. View upcoming volunteer opportunities at tinyurl.com/MinnMSvolunteers
Volunteer spotlight
Special Event Volunteer All Stars Nick Anderson Susan Monsrud Garry Wellens Programs Volunteer All Stars Mark Caffrey Jennifer Connors Colleen Sazama and Mary Chase
Youth Volunteer All Stars Jessica, Emily and Peter Blosberg; and Sarina Zindath Meghan Janssen Team of the Future St. Cloud (lead by Nicole Wadtke and Megan Abram)
Mary Jensen Mary Jensen volunteers in the Minnesota Chapter office every other week to thank volunteers who have helped out at recent events. Her brother Dave regularly gets roped into phone calling, too! Mary Jensen and her brother Dave
Jensen, a former dental hygienist, grew up in Spring Lake Park, Minn., where she still lives today. She has one daughter, who recently graduated from college. Her family and friends know her as the most hospitable person around! The MS Society is lucky to have dedicated volunteers like Mary Jensen.
JOIN THE MOVEMENT nationalMSsociety.org
ADVOCACY
Get ready to rally! One of the most important things you can do as an MS activist is to educate your community about multiple sclerosis and how it affects you. Your elected officials, locally and nationally, need to understand MS so they can be better informed about how this disease affects their constituents.
Share your story with us
The MS Society needs your help as we gear up for the 2011 legislative session. Join forces with hundreds of activists statewide to make changes for people with MS. There are countless ways to get involved. Here are a few on the horizon …
If you live near or are visiting the St. Paul area, consider setting up an appointment with your legislator. Minnesota Chapter staff are happy to schedule and attend the meeting with you.
Rally at the Capitol Mark your calendar for an exciting MS Awareness Week event, March 15, 2011. Join others affected by MS to network, raise awareness and make a splash at the State Capitol in St. Paul. The rally will begin at 11 a.m. and will include a festive program and exciting speakers.
The Minnesota Chapter is gathering videos from MS activists statewide, organizing them on DVDs and delivering them to legislators during the session. To participate, create and send us a two-minute video that answers the question: “How has MS affected my life?” We’ll also collect stories in Duluth, Rochester, Buffalo, St. Cloud and at the MS Annual Convention in Minneapolis.
Meet with your legislator
If you’re interested in participating in the rally, recording your story or meeting with your legislator, contact Jenna at 612-335-7981 or jwashnieski@MSsociety.org.
GET ACTIVATED Stay on top of the latest news from the Capitol by signing up for Action Alert e-mails. Plus, follow Minnesota Chapter advocacy staff on Twitter at @MSactivismMN
MS Registry The National MS Society recently helped pass a bill in Congress, and at the time of publication, is working with MS activists to pass a bill in the Senate. This bill would establish an MS registry at the Centers for Disease Control and Prevention (CDC). A more accurate estimate of who has MS and how common it is could enhance areas of research, including genetic and environmental
risk factors. The last national study of MS incidence and prevalence was conducted 35 years ago, and the lack of up-to-date information inhibits MS research. This bill would mean more data and better targeted programs and services for people living with MS. For the most up-to-date news on the MS registry, visit MSactivist.blogspot.com. TOLL-FREE NUMBER 800 344 4867
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GIVING
On the Move Luncheon a success for students affected by MS Thank you to everyone who attended the Minnesota Chapter’s 11th annual On the Move Luncheon. Nearly 400 people joined us Aug. 19, to hear keynote speaker Jourdan Urbach and local presenter David Chaikin. Together, we raised more than $126,000 for our scholarship program!
Scholarship review team chats with scholarship recipient Brittany Groess
Many families struggle to cope with the financial demands of sending a child to college, and the impact on families affected by multiple sclerosis is particularly severe. Young people living with MS have the added challenge of maintaining their grades while coping with a chronic disease. It’s not uncommon for some students to defer college acceptance to work and save, to resist asking parents to co-sign student loans and to turn down a scholarship due to non-tuition expenses. Our scholarship program exists to make sure MS doesn’t stand in the way of an education. This year, the Minnesota Chapter awarded $100,000 to 55 students, one of whom was a national scholarship winner. Planning for the 2011 On the Move Luncheon in already in progress! If you’re interested in hosting a table or donating an auction item, please contact Lindsay at 612-335-7976 or lhansen@MSsociety.org.
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LIVING well WITH MS
Living well with MS People live with multiple sclerosis, but is it possible to live well with MS? Many people do. They learn ways to address issues central to their overall well-being. “Wellness is not dependent on not having a disease — you can have a health issue and still live well. You can learn strategies to live optimally with the disease,” said Stephanie Fisher, M.A., executive director of the Marilyn Hilton MS Achievement Center at UCLA. The Hilton Center recently shared its experiences as a leader in the wellness field. Here are some of what they view as core components of wellness.
Exercise Physical activity blunts the impact of MS by improving the body’s overall condition — increasing strength, range of motion and cardiovascular health. Working with a health care professional will help determine what and how much exercise works for you — whether it’s tai chi, yoga, aquatic exercises, bicycling or something else.
Eating well Good nutrition is important, as is managing weight, since extra pounds add to fatigue. There are lots of resources on eating healthily (and deliciously). Visit MSsociety.org and search for “nutrition” to find recipes, meal planning and information on nutrients important to people with MS.
Knowledge A current and accurate understanding of MS, its symptoms and treatments can help people
navigate medical decisions and get more from their partnerships with health care professionals. However, there’s a lot of misinformation both online and off. Visit MSsociety.org to find up-to-date and helpful resources.
Emotional and spiritual resources The grief and sense of loss a diagnosis brings up are powerful factors. Paying attention to one’s inner self can help people learn to recognize the things that drain them emotionally and how they can minimize them.
KNOWLEDGE IS POWER “Knowledge is Power” is a six-week, free, at-home educational program for people who are newly diagnosed and is available in mail or e-mail formats. To register, call 800-344-4867 or visit nationalMSsociety.org/knowledge TOLL-FREE NUMBER 800 344 4867
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LIVING well WITH MS
Adventures in cholesterol
By Katherine Shaw
I’ve always considered my cholesterol level a source of pride. At a happy 150ish for the last 25 years, I was sure cholesterol would never be a concern. I have MS. Isn’t that enough?
smirk. “What?” I ask, feeling left out of the joke. “You’re younger than we are, but not by much. It’s called aging,” explained the doc. “And no, you can’t blame it on the MS.”
So last year, I go to the doc for a check-up. Blood work comes back with a cholesterol level of 210. But the doc says no big deal. Since I didn’t fast beforehand, it’s probably nothing. But I made sure to fast this year and my level was 210 again! What? I haven’t gained weight or done anything to deserve this. I don’t get it!
Since that time, I’ve become a better listener when my middle-aged friends complain about their health. They’ve become a wonderful reality check for me. As it turns out, I can’t blame the reading glasses on my MS either. Go figure.
On a visit to my MS doc, I whip out my blood tests and ask if this ridiculous jump could be related to my MS. Both the doc and the nurse
However, in thinking through this little cholesterol adventure, I have to say I’m pleased with the outcome. Better normal aging than the progression of disease! Katherine Shaw lives in Ohio.
research
Study suggests meditation improves some MS symptoms The newest, largest study of its kind shows mindfulness-based meditation significantly improves health-related quality of life, depression and fatigue based on 150 people with relapsing-remitting and secondaryprogressive multiple sclerosis. This controlled study provides important evidence on the value of an alternative treatment for MS symptoms, and it highlights the importance of focusing on quality-of-life issues to improve well-being. Depression and fatigue are common symptoms of MS and can interfere with quality of life. For this study, investigators focused on whether a type of meditation, called mindfulness-based
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intervention, could improve well-being in people with MS. This form of meditation is mental training aimed at changing an individual’s perception, and creating awareness and acceptance of moment-to-moment experiences. The goal is reducing reactions that may worsen any pain or emotional distress that occur from health-related changes. Read more about symptoms of MS and ways to cope with them at tinyurl.com/symptomsMS
research
Why does MS research cost so much? For those that do, more time-consuming and expensive tests must be performed to ensure a new drug is both safe and effective.
Fifteen years ago, multiple sclerosis was a very different disease. Some symptoms could be treated, but there were no drugs available to treat the disease itself. That’s not so today, thanks to MS research breakthroughs. Still, the need for better treatments remains pressing and MS research continues toward this goal. There’s no doubt research comes at a cost. Bringing an MS drug from idea to reality can cost more than a billion dollars. What exactly makes MS research so expensive? We asked Timothy Coetzee, Ph.D. and president of Fast Forward, a research subsidiary of the National MS Society established to fast-track research into MS and help bridge the gap between research findings and the companies that will manufacture and market the therapy. “You pay scientists to design and execute research plans; you pay technicians to analyze results,” Dr. Coetzee told us. This work requires highly specialized equipment in physical plants the FDA has to approve. “You’re not doing MS research in your garage,” he pointed out. After all the lab and animal studies, many promising therapies will fail to prove out.
Testing MS drugs is particularly complex, Dr. Coetzee noted. A blood pressure pill either lowers blood pressure or doesn’t. But with MS, he continued, “We’re trying to measure what happens to a person’s disease course, which you can usually see only over time. Changes in MS are slow and subtle. All that time adds to the cost.” The Society invests in university-based research across the world. But that research can only become reality — a medication available for physicians to prescribe — with the involvement of the private sector. “In today’s environment,” Dr. Coetzee said, “there’s no guarantee that even good discoveries will actually make a difference in people’s lives because of the expense involved in doing needed trials. Fast Forward wants to move the ball down the field a little faster. We don’t want to leave it to chance.” For example, Amplimmune, a startup pharmaceutical company in Rockville, Md., is currently testing a drug called Amplimmune-110 for MS and other autoimmune diseases with support from Fast Forward. “We matched Amplimmune up with MS researcher Stephen D. Miller, Ph.D., of Northwestern University,” Dr. Coetzee said. “Dr. Miller discovered new ways the drug works that Amplimmune’s scientists weren’t aware of. We now hope clinical trials can begin within the next couple of years.” TOLL-FREE NUMBER 800 344 4867
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CORPORATE SPOTLIGHT
A chat with the National Dizzy and Balance Center
The Minnesota Chapter recently had a chance to talk with National Dizzy and Balance Center (NDBC) Marketing and Referral Director Jennifer Ginkel about their unique outpatient clinic system. NDBC combines medical doctors, audiologists and physical therapists to offer a multidisciplinary approach to balance disorders.
What’s the difference between dizziness and vertigo? How do you know if you’re experiencing either?
It looks like NDBC treats balance and gait problems due to mS. Let’s talk more about your clinic’s experience treating patients with MS. NDBC does not treat the disease directly. However, we treat the underlying issues multiple sclerosis causes like dizziness, vertigo, motion intolerance and balance disorders. Every patient who comes into our facility has an individual rehabilitation plan. We take into consideration individuals with MS will fatigue more quickly. We work with MS patients on periodic stimulation, which retrains the brain to understand the deficit it has. It’s especially
Dizziness is a common term and can have different meanings for different people. Some describe it as a woozy, lightheaded feeling, or abnormal perception of motion. Others describe it as an unsteady feeling where you feel like you’re going to fall. Vertigo is a special term meaning a sensation of spinning either with one’s own body or with the world around you. You’ll know if you’re experiencing either because both disrupt daily life tasks such as chores, work and driving. Together, they can be very harmful as they can lead to falls and injuries.
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National Dizzy and Balance Center at the Twin Cities Walk MS: Christopher & Banks Walk 2010 presented by Walser
CORPORATE SPOTLIGHT
important for people with MS to continue home exercises because the most successful rehabilitations stem from those who continue their regimen after their scheduled sessions are over.
schedule a visit to your community center or group. We will come and provide more information on what NDBC does as a facility as well as describe dizziness, vertigo and balance disorders.
Tell me more about the free monthly seminars you offer. What’s coming up?
Will we see Team Dizzy at the 2011 Walk MS May 1?
NDBC offers free seminars twice per month. Visit us online at stopdizziness.com for more information. You simply need to call us to
Yes, Team Dizzy will be part of Walk MS again in May. We felt privileged to be there last year and to take part in such a wonderful cause!
Cub awarded Corporate Star Sylvie The Minnesota Chapter is happy to announce the 2010 Corporate Star Sylvie award winner: Cub! This annual award is given to a company that shows excellence in both in-kind and financial sponsorship. Cub has been a great partner to the MS Society over the years. From contributing dollars to the scholarship program, to establishing an endowed scholarship, to hosting a celebration event for scholars, Cub has helped to ensure MS does not stand in the way of a college education. Cub also donated Walk MS prizes, started a Bike MS team and invited Cub employees to the On the Move Luncheon. The Minnesota Chapter presented Cub with a signed photo of this year’s scholarship recipients at the On The Move Luncheon.
Thank you to Cub, for moving our mission forward!
TOLL-FREE NUMBER 800 344 4867
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events
Community events raise dollars and awareness for the Minnesota Chapter Thank you to the following people and organizations for their commitment to a world free of MS. Accolades, Kiss Off MS Cut-a-thon – $600 Barden’s Bar, Auction – $6,227 BJ LaVelle, Body and Soul fundraiser – $9,000 Blake Middleton, MS Cup sailing event – $22,880 2010 LaTable Luncheon
CRASH + SUES, Ad Ride and Rock motorcycle tour – $6,162 H and R Ten-Hi, Inc., Motorcycle tour – $1,272 John Johnson and Committee, Crawl 4 a Cure 4x4 jeep event – $43,521 Josh McKay, Beat Coffee House – $302 Kathy Regret, Concert fundraiser – $258 MaCal Grove Country Club, MS golf tournament – $2,640
2010 Kiss Off MS Cut-a-thon Throughout the year, many people organize community fundraising events to support the MS Society. In 2010, these dedicated volunteers raised more than $100,000! Interested in starting a fundraising event in your community? Contact Jody at 612-335-7926 or jpayne@MSsociety.org.
Maple Lake Lions Club/Madigans Pub and Grill, Fun run and golf scramble – $2,700 Mark and Cheryl Post, BMX Race for the Cure for MS – $4,450 Mike Machus and Tyler Middleton, Quest golf tournament – $13,654 Nina Steil, LaTable Luncheon – $22,000 Rocky Olerud, MS Bowl-a-thon – $315 Roxann Loser, Motorcycle event – $1,970 Sarah Davy, MN Daily 5K run – $1,020 Tastefully Simple, Silent auction – $764 Wendy Plaster, Quest for MS CD sales drive – $750
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EVENTS
Check out 2011 Minnesota Chapter events
MS Sno Rally Snowmobile Tour
Feb. 10-13 Ride to create a world free of MS. Walk MS: Christopher & Banks Walk presented by Walser May 1 Walk to create a world free of MS. Bike MS: Allianz Twin Cities Ride May 7 One day. One ride. Make your mark against MS. Bike MS: C.H. Robinson Worldwide MS 150 Ride June 10-12 An unforgettable ride. An unbeatable destination. A world free of MS. Bike MS: Star Tribune TRAM Ride July 24-29 The ultimate Minnesota road trip. Ride MS: Motorcycle Tour Aug. 13-14 Finding hope on the open road. On the Move Luncheon August An inspiring, motivational and empowering event. Mud Run Twin Cities Sept. 10 Get dirty for a good cause.
Register today! Sign up online at MSsociety.org
Challenge Walk MS: Twin Cities Sept. 23-25 Three days. 50 miles. Accept the challenge. Run to Stop MS Oct. 2 In partnership with the Medtronic Twin Cities Marathon. TOLL-FREE NUMBER 800 344 4867
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from page 1
An informed choice
WEB EXTRA
While oral drugs have long been a goal for researchers, the choice will not be as simple as putting down a needle and popping a pill. Gilenya is a powerful drug with potential side effects and risks as well as possibilities. The label carries warnings about these, including decreased heart rate after the first dose. The drug also increases risks of certain infections. In clinical trials, two deaths from herpes infections occurred in people who took Gilenya at a higher dose than the level that has been approved. A number of pretreatment tests will be required, and people will be monitored for potential lowered heart rate for six hours following their first dose. On the up side, clinical trial data suggest that Gilenya has a stronger impact on reducing relapse rates than a standard disease-modifying drug, Avonex.
ERA OF ORAL TREATMENTS Learn more about oral fingolimod at tinyurl.com/fingolimodnews
save the date
MS Awareness Week Share your story, educate your community and engage others during MS Awareness Week March 14-20, 2011. Visit MSsociety.org in January for an online toolkit full of excellent downloads and ideas for making a splash in your hometown!
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Down and dirty for MS The first-ever Mud Run Twin Cities benefitting the National MS Society, Minnesota Chapter was a gigantic success (and a gigantic mess)! More than 1,500 people got down and dirty and raised more than $275,000 toward a world free of MS. Connect with Mud Run Twin Cities on Facebook, and check out all the crazy photos on Flickr at flickr.com/photos/minnesotaMS.
CALENDAR
Feb. 10-13
MS Sno Rally Snowmobile Tour; Cable, Wis.
Feb. 24
Care Partner Social; St. Louis Park, Minn.
March 14-20 MS Awareness Week May 1
Walk MS: Christopher & Banks Walk presented by Walser
May 7
Bike MS: Allianz Twin Cities Ride
Check out a list of upcoming community fundraisers at tinyurl.com/MS-CommunityEvents Telephone consultations *Free and by appointment only Family attorney consultations Rod Jensen, attorney at law Call chapter to schedule appointment. Employment consultations Jennifer Johnson, tips on interviewing, resumes and more Call chapter to schedule appointment.
For information or to register Programs Contact registration line: 612-335-7900 800-582-5296 Telephone consultations Contact Sarah, Jill or Heather: 612-335-7900 Fundraising events Contact Cortney: 612-335-7971
Employment discrimination/private disability consultations Denise Tataryn, attorney at law Jan. 6, Feb. 3 and March 3 Financial planning consultations John Robinson, C.F.P.速, financial advisor Dec. 13, Jan. 10 and Feb. 14 Newly diagnosed consultations Call 612-335-7938 to schedule a face-to-face or phone consultation with a Minnesota Chapter social worker. Some evening and Saturday times are available.
TOLL-FREE NUMBER 800 344 4867
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Nonprofit US Postage
PAID
Minneapolis, MN Permit No. 1759
200 12th Ave. S. Minneapolis, MN 55415-1255
NEWS
Champions program gives cyclists a reason to ride Champions is a program created to help Bike MS: C.H. Robinson Worldwide MS 150 Ride cyclists connect with people living with MS to foster education, awareness, gratitude, and most importantly, hope. The Champions program gives cyclists in the two-day, 150-mile ride a chance to participate in honor of someone with MS — making the experience more fulfilling. Are you a person living with MS? Would you like to help make stronger connections with cyclists who raise funds for MS? Do you want to share the mission behind Bike MS with a group of riders? Fill out a Champion profile at tinyurl.com/Championprogram. You will be featured with your photo on the Minnesota Chapter website.