MINNESOTA CHAPTER
MOVING TOWARD A WORLD FREE OF MS | WINTER 2009/2010
Creating change: you hold the key With the 2010 legislative session approaching, the National MS Society, Minnesota Chapter is busily preparing strategies to make positive changes for people affected by MS. This year the chapter will revisit issues introduced last year, but with a new twist, and offer several opportunities to put your activism into action.
Affordable access to MS disease-modifying drugs Activism means different things to different people. While being an activist may sound like a lot of responsibility, it’s really as simple as speaking up for an issue you feel strongly about. Believe it or not, we are all activists. Our commitment to creating a world free of multiple sclerosis unifies and propels us to advocate for people with MS and their families.
At the Minnesota Chapter, we often hear from people who can’t afford their MS drugs. It’s no wonder. In the past few years several health plans have increased co-payments for MS prescription drugs from a $25 for a threemonth supply to $200 for a one-month supply. This causes financial strain for people with the disease and forces them to make drastic decisions between paying for treatment and paying bills and other living expenses. continued on Page 18
INSIDE THIS ISSUE
News Page 5
News Page 8
Volunteers Page 10
Events Page 14
612-335-7900 / 800-582-5296
Can you help us?
Publication of the National Multiple Sclerosis Society
Chair • Karen Larson
If you are able to make an in-kind donation to the Minnesota Chapter, contact Teri Cannon at 612-335-7925 or tcannon@MSsociety.org. To see the full in-kind list, visit MSsociety.org and click “Donate.”
Chapter President • Maureen Reeder
Office and event supplies
Newsletter Editor • Emily Wilson
n 10-key printing
n fluorescent colored
n Avery® mailing labels
n fluorescent green
n bankers boxes
n food service gloves
Minnesota Chapter
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 that 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. © 2009 National Multiple Sclerosis Society, Minnesota Chapter
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calculators
(5160 or 5164)
(letter size, 15 or 24 inches deep)
n barbecue brush/
tongs/spatula set
n candy (miniature and
fun size)
paper (in reams) safety vests
n knives (large) n ladles n serving platter n silverware set n snow shovels
n clear packing tape
n spatulas
n coffee mugs
n trash bags
n crock pot (large) n dinner plates
(16 or 55 gallon)
n water glasses
n driveway salt/sand n envelopes (6 by 9 inch
or 11.5 by 14.5 inch)
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 contact the society at www.nationalmssociety.org or 1-800-582-5296 to learn more.
LETTER FROM THE PRESIDENT
A message from Maureen Eleven years ago, I wrote my first column for the MS Connection on my first day of work at the National Multiple Sclerosis Society, Minnesota Chapter. In that column, I said that, “It is with great Maureen Reeder joy and pride that I take Chapter President on this new challenge. I am thrilled to work for something I truly believe in.” I came to my position as president of the Minnesota Chapter with first-hand experience as a volunteer and fundraiser because my mom had MS. I held a deep appreciation for the many ways the MS Society had helped my family. And I expressed in that column that I had much to be thankful for as I began my first day of work. Today I am writing my last column for the MS Connection. I have accepted a new position — with the MS Society — as the Regional Executive Vice President for eleven states in the Midwest. As I think about this change, I think about how little has changed in my feelings toward the MS Society. I still have much to be thankful for. In my new job, I will continue to work with the terrific volunteers, fundraisers, and staff of the Minnesota Chapter and I get to work
with even more folks from throughout the Midwest. I will still work on behalf of the thousands of people with MS here at our chapter and now throughout the region. The goal of this new structure is to foster collaborations and better sharing of resources so we can do a better job of providing needed services to people with MS and their families and find efficiencies to save money so we can put more funding toward critically important research. Eleven years ago on my first day of work I wrote, “I am thankful for the chance to lead this great organization. I am thankful to the members of the MS Society Board who are giving me this once-in-a-lifetime chance to work for a cause I strongly believe in. I am thankful to the staff of the Minnesota Chapter for the help and support they’ve given me and my family for so many years. I am thankful to those of you who have MS for giving me this opportunity to serve you.” These words still ring true as I transition to a new role and I can add that I am thankful my life has been enriched by the many people I’ve met as your president. There is one more thing I wrote on my first day at the MS Society that is still true, “I dedicated myself today and evermore to doing everything I can to help end the devastating effects of MS.”
“I am thankful my life has been enriched by the many people I’ve met as your president.”
TOLL FREE NUMBER 1 800 344 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 of this topic online. Follow the instructions at the end of the article to find the extra coverage, or just browse the news section of our Web site. Visit www.MSsociety.org and click on “MS Connection news” on the left-hand side. From there, sort by topic or date.
n An MS pain checklist
More than half of people with MS experience pain at some point or another. Learn important steps in managing this symptom.
Visit MS Connection news and click on “Living well with MS.” n Marijuana — the questions continue
Some small studies have shown promise in using cannabis to treat pain in MS. But there are many concerns about possible risks. Find out what the society’s expert task force and others have to say on this issue. Visit MS Connection news and click “Research.”
Apply for 2010 scholarships The deadline to apply for a 2010 National MS Society scholarship is Jan. 15, 2010. High school seniors with a parent who has MS, high school seniors with MS and high school (or G.E.D.) graduates of any age who have MS may apply for a scholarship if they plan to attend an accredited post-secondary school for the first time. In 2009 the National MS Society, Minnesota Chapter awarded college scholarships to 52 students touched by MS in Minnesota and western Wisconsin — totaling more than $100,000.
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APPLY ONLINE To learn more or apply, visit nationalMSsociety.org/scholarships. Questions? Contact Megan at 612-335-7955 or msparks@MSsociety.org.
NEWS BRIEFS
Two MS oral therapies on the verge of market approval As of press time, two experimental oral treatments for relapsing-remitting multiple sclerosis, which have been shown to significantly reduce relapse rates in clinical trials, were nearing market approval. If approved, cladribine and fingolimod could become the first-ever oral disease-modifying treatments for people with MS. In late September, EMD Serono applied to the U.S.
Food and Drug Administration for approval to market cladribine, and Novartis International AG announced positive results from a phase 3 clinical trial of fingolimod. Novartis expressed plans to apply for market approval in late 2009. Stay tuned as more news develops at www.nationalMSsociety.org/research.
Flu vaccines and MS In order to ensure full protection against the flu — both seasonal strains and the H1N1 virus — the Centers for Disease Control and Prevention recommends people get two shots this year. Flu vaccines are safe, and highly recommended, for people with multiple sclerosis as long as a “killed” or deactivated vaccine is used. The “regular” flu shot is made this way. A nasal spray called “FluMist Intranasal” is not recommended for people with MS, especially for people taking Novantrone, Cytoxan, Imuran,
or methotrexate, because it uses a weakened live vaccine. At press time, the first shipments of the H1N1 vaccination had arrived in Minnesota, but with supplies limited. The CDC identified five groups to receive the vaccine on a priority basis, such as pregnant women and infants. People with disabilities, including MS, are not necessarily considered part of this high-priority group, however there may be exceptions. People with MS should talk with their doctor to determine if they are a good candidate for the de-activated H1N1 vaccine. Visit nationalMSsociety.org/flu for the most up to date information.
Chapter to host four research symposiums in 2010 In 2010, the National Multiple Sclerosis Society, Minnesota Chapter will host four research symposiums in various regions throughout the chapter area. The free symposiums will feature local neurologists who will present the latest in cutting-edge MS research and emerging therapies and treatments. Each symposium
also includes a session outlining the process of clinical trials, how people with MS can participate in trials and what participants can expect from the experience. Dates and locations are to be determined. Check www.MSsociety.org in early January to learn details about these programs. TOLL FREE NUMBER 1 800 344 4867
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NEWS BRIEFS
Medicare Part D enrollment period ends Dec. 31 The annual enrollment period for the Medicare Part D prescription drug program is Nov. 15 through Dec. 31. During this period people with Medicare can enroll in a plan or change their enrollment from one plan to another. All plans have different costs and benefits from year to year. It is crucial for all beneficiaries to carefully review the 2010 options and make the best choices for the coming year. Watch for a letter from your current drug plan for details on increased costs to you and other changes
they’re planning for 2010. Reforms to Medicare are in the news but no changes have been made, so consideration of the “doughnut hole” remains important.
LEARN MORE For more information contact Medicare at 800-MEDICARE, visit medicare.gov, or contact the Minnesota Chapter.
Stocking stuffers? Hanukkah goodies? Looking for a way to support the MS movement this holiday season? Let your gifts raise money and MS awareness. Visit the Society Store at www.MSsociety.org
(click on “Society Store” in the bottom right-hand corner). You’ll find hats and mugs, eco-friendly shopping bags, T-shirts, note cards, and more, with prices ranging from $7.50 to $19.50. Or visit Art to Shirt at artoshirt.net/ servlet/the-MS-Artists/Categories for unusual T-shirts by artists living with MS. Most have the motto: “MS: Find the Cure.”
Call for board candidates The chapter governance committee is considering candidates to serve on the board of trustees. To propose a candidate, write to Bill MacNally, chair of the governance committee, by April 1.
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Mail nominations to 200 12th Ave. S., Minneapolis, MN 55415. The committee will select the best-qualified candidates and present a slate of nominees at the 2010 annual meeting. Nominees will not be taken at the meeting.
NEWS
Chapter announces On the Move speech contest
The National MS Society, Minnesota Chapter wants to know how the society keeps you on the move. Tell us how and you could be a featured speaker at the 2010 On the Move Luncheon, held in August in the Twin Cities. The On the Move Luncheon is a motivational and empowering event that brings people together to raise money to end MS. Last year, the luncheon drew more than 450 people and raised nearly $150,000 including $45,000 to support the Minnesota Chapter Scholarship Program and a $25,000 matching gift from Christopher & Banks. This year, the chapter plans to feature the inspiring stories of people who have been personally touched by MS, whether they have MS or have a loved one living with the disease. The contest winner will be a keynote speaker at the 2010 luncheon and will appear in event promotional materials. All entries must be received by Monday, Jan. 11. For more information, contact Rachel Hughes at 612-335-7965 or rrhughes@MSsociety.org.
Last year’s On The Move Luncheon featured playwright and storyteller Kevin Kling as keynote speaker. How to enter
1. Prepare a three- to five-minute speech that answers the question, “How does the MS Society keep you on the move?” 2. Submit a video (digital format, DVD or VHS) of your presentation or stop by the chapter office on one of the following dates to have a staff member record your speech. Tuesday, Dec. 8, 4 to 6:30 p.m. Tuesday, Dec. 15, 1 to 4 p.m. Thursday, Jan. 7, 4 to 6:30 p.m. Video entries should be mailed to: Rachel Hughes, National MS Society, Minnesota Chapter, 200 12th Ave. S., Minneapolis, MN or e-mailed to rhughes@MSsociety.org.
TOLL FREE NUMBER 1 800 344 4867
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NEWS
Make a splash during MS Awareness Week MS Awareness Week 2010 is March 8 to 14, and the National Multiple Sclerosis Society, Minnesota Chapter calls on everyone involved in the MS movement to hit the streets, raise their voices and educate their communities. Due to the success of last year’s theme — “Move it” will continue to serve as the theme for MS Awareness Week 2010. Last year, people with MS, volunteers, event participants and friends of the MS Society came up with amazing ways to make a splash in their communities. Some examples include: n Volunteers organized an information table
with MS symptom simulators at the Hibbing Community College every day during MS Awareness Week.
Volunteers posed by the Mary Tyler Moore statue on Nicollet Mall in Minneapolis during an MS Awareness Week photo shoot.
n A Bike MS ambassador recruited friends to
to make a splash — it just has to move the MS awareness message forward in its own unique way.
n A professional photographer with MS held
The Minnesota Chapter also offers exciting opportunities throughout the week to volunteer on street teams, advocate for the rights of people living with MS and other disabilities, register for Walk MS and Bike MS events, raise awareness and more.
hand out brochures and MS tattoos on the light-rail train during evening rush hour.
an all-orange photo shoot in downtown Minneapolis, which received news coverage in the Twin Cities.
n The Students Against MS Club at the
University of St. Thomas designed MS Awareness Week T-shirts and hosted a table outside the school cafeteria.
The Minnesota Chapter is looking for committed volunteers to plan activities like these in their communities. Now is the time to start brainstorming creative ideas with family, friends, co-workers, Walk MS or Bike MS teams and self-help groups. An event doesn’t have to be big or complicated
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Visit MSsociety.org in January for an online toolkit full of resources and ideas.
Get involved For more information or to discuss your MS Awareness Week plans, contact Jenna Washnieski at 612-335-7981.
NEWS
Chapter announces care partner, health care professional of the year Family care partners and health care professionals are essential to providing support and care to people living with multiple sclerosis. The National MS Society, Minnesota Chapter recognized this year’s recipients of the Care Partner of the Year Luminary Award and Health Care Professional of the Year Starfish Award at the Sylvies Nov. 21 in Bloomington, Minn.
Care Partner of the Year Luminary Award — Dan Rude Jean Rude says when she was diagnosed with multiple sclerosis in 2002, her life changed forever — and so did her husband, Dan’s. “Every day, Jean and Dan Rude this disease brings a new challenge,” Jean said. “Yet from the moment I was diagnosed, Dan has been so supportive of me.”
On top of facilitating the couples group — and running his own business — Dan participates in Walk MS each year and even started his own self-help group for men in caring roles that meets for breakfast every month.
Health Care Professional of the Year Starfish Award — Dr. Gareth Parry
Dr. Gareth Parry
After Kari Brownson was diagnosed with MS, the disease progressed rather quickly within the first several months. When she visited Dr. Gareth Parry, she was pleasantly surprised to learn he had done his homework.
“Before our first meeting, he had a plan laid out on how to better deal with my MS,” Brownson said. “He took the time to extensively look over my MRIs and list of symptoms — he knew my case very well before I ever stepped foot in his office.”
Whether it’s taking her to doctor appointments or assuming extra responsibilities around the house, Jean says Dan is always aware of her needs Parry is medical director of the MS Center and willing to do whatever it takes to meet them. and Clinical Neuroscience Research Unit and professor of neurology at the University of Shortly after her diagnosis, Jean learned about Minnesota in Minneapolis. He’s also a member an MS self-help group for couples in Stillwater, of the Minnesota Chapter Clinical Advisory Minn. She was unsure whether Dan would be Committee and a frequent contributor to interested but asked anyway. “To my surprise, chapter MS education programs. he said yes, and we found the group very helpful,” “He has a great knowledge of the disease,” she said. A couple of years later, Jean and Dan Brownson said. “And he’s a very friendly, agreed to take on the responsibility of leading approachable man who does a great job of the group. clearly explaining everything.” TOLL FREE NUMBER 1 800 344 4867
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volunteers
Volunteers recognized at annual Sylvies award show Sylvie award winners were recognized Nov. 21 at the Sheraton in Bloomington, Minn. Here are this year’s winners in the volunteerism category: It all started when she placed a classified ad in the New York Times more than 60 years ago. Sylvia Lawry went on to single-handedly launch an international movement to end multiple sclerosis. Today, the MS movement is made up of people — like Sylvia — who know that passion alone can move mountains. The Minnesota Chapter created the Sylvies — an annual awards dinner — to celebrate the amazing people who have brought their passion to our movement. Sylvia Lawry, National MS Society Founder, 1915-2001
Norman Cohn Hope Award Jeanne Voigt For more than a decade, Jeanne Voigt has played an integral role in the MS movement — serving on the Minnesota Chapter’s board of trustees and lending her expertise, passion and vision to countless projects. Voigt helped launch the scholarship program in 2006, which she continues to support both financially and as a member of the Scholarship Review Team. One scholar in particular — Brittany Groess — moved Voigt to give even more. After a brain tumor diagnosis at age 11, Groess faced another health challenge at age 19: She was diagnosed with MS. Inspired by Groess’s determination to attend college in spite of these obstacles; Voigt pledged $30,000 to be given over the next five years to fund two scholarships in Groess’s name. This outstanding pledge ensures access to and support in higher education for students with MS.
Lifetime Achievement Award
Chapter Volunteer All-Stars
Marianne Green
Warren John Kirk Kupka Bill MacNally
National Volunteer Hall of Fame Dave Anderson (Programs and Services) Bill Gillispie, Jr. (Fundraising) Judy Soderberg (Health Care Professional)
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Activist Volunteer All-Stars Dennis Bestge David Chaikin Susan Stellmacher
volunteers
Rookie Volunteer All-Stars First-year self-help group facilitators: Julie Olson and Ordell Adkins; Denise Pederson and Susan Monsrud; Donna Johnson; Bob Overturf; and Jennifer Stewart and John Westerfield
Programs Volunteer All-Stars Neil Dohlmann Rebecca Olson
Special Events Volunteer All-Stars Linda Gill and Mari Marson Jeanette Hiepler Don Horton and Curt Olson
Leadership Volunteer All-Star Mike Crusham
Youth Volunteer All-Star
MS Camp volunteers with 15 or more years of service: Kelly Allen, Connie Anderson, Dave Hanson, LaVonne Helget, Tom Holtackers, Lisa Larson, Wanda Linder, Jean Schoenecker, Gayle Sims, Reggie Walton and Sharron Westerberg Read about all of this year’s winners at www.MSsociety.org. Click “MS Connection news” on the left-hand side, then “Volunteers.”
Volunteer opportunities MS Awareness Week, March 8 to 14 Help raise MS awareness in your community as part of a street team, advocate and more.
Walk MS: Christopher & Banks Walk, May 2
Meredith Proulx
Help at one of 17 locations.
Office Volunteer All-Star
Bike MS: Allianz Twin Cities Ride, May 8
Caidin Riley
Group Volunteer All-Stars On the Move Luncheon Committee: Pat Budnik, Christine Calkwood, Lyn Gustafson, Katy Holden, Alicia Jackola, Carie Kuha, Carol Lorenzen, Joyce Nelson Shellhart, Brianna Peikert, Julie Serlin-Lunda, Karen Sletten, Barb Thornton, Michael Tierney and Margit Whitam. 20s and 30s Advisory Group: Tracy Bohm, Lindsay Berg, Erin Chipman, Natasha Frechette, Shannon Hicks, Katie Koster, Mark McNairy, Katie Netzel, Janet Nurnberg, Brianna Peikert, Dale Robinson, Jeremy Rosengren, Erin Weber and Kelley Zylstra
Assist with route safety, rest stops, registration and more at this one-day ride in Maplewood, Minn.
MS Camp, dates TBD Help as a nurse, cabin assistant and more at this weeklong program.
MS Youth Camp, dates TBD Help as a nurse, cabin counselor and more at this weeklong program. To see the latest volunteer opportunities, visit www.MSsociety.org and click “Volunteer.” TOLL FREE NUMBER 1 800 344 4867
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LIVING well WITH MS
This way to a healthy, happy mouth We all know good dental care prevents infection, promotes better nutrition and keeps your smile happy. Regular brushing, flossing and visits to the dentist can even help forestall expensive future procedures, like root canals. But brushing and flossing can be difficult if you experience numbness, spasticity, tremor or fatigue. Plus, it’s easy to forget to schedule regular dental exams when there are so many other medical appointments to handle. Here are a few things you can do. Get a grip with tooth “aides.” Ask an occupational therapist about electric toothbrushes, or toothbrushes with a built up or extended handle. Or try wrapping the handle with a washcloth or sliding it into a tennis ball with a slit cut into it. Weighted toothbrushes may help with tremor. Visit www.abledata.com for some examples plus other items including one-handed toothpaste dispensers. Save energy for the important things — like flossing. Try easy-to-use flossing “swords,” available in drugstores, and multitask — floss while watching television or in bed. If you’re too tired at night, floss in the morning. If standing at the sink is tiring, sit down. You can also try asking a family member to help. Longhandled toothbrushes can be held by a second person. Also, remember to schedule dental appointments for the time of day when you have the most energy. 12
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Prevent dry mouth. Some medications used to treat MS symptoms can cause dry mouth, which in turn can lead to gum disease or mouth infections. Talk to your health care providers. They may be able to adjust the dose or even change the medication. If not, ask about a prescription for an oral rinse or a recommendation for an over-the-counter remedy. You can also try squirting small amounts of lemon juice into your mouth or sucking on sugar-free lemon candies. Drink plenty of water — staying hydrated will help. Use a humidifier at night and avoid alcohol, tobacco and caffeine.
Healthy living tip Many people with MS deal with fatigue, and less daylight makes it even harder during long Minnesota winters. Help fight fatigue by eating a small protein snack in the afternoon such as a mozzarella cheese stick, beef jerky, cottage cheese, or peanut butter. Also, avoid big helpings, sugary desserts and caffeine.
giving
Society launches Golden Circle campaign The National Multiple Sclerosis Society recently launched the Golden Circle — a special membership program acknowledging people who give annual, non-event gifts of $1,000 or more to support MS research and programs and services for people living with the disease. The program — which launched nationally in October 2009 — was spearheaded by the National MS Society, Southern California Chapter in 1993. “The only way to advance our mission is with contributions. We can’t wish it to happen, it has to be funded,” said Julie Kaufer, volunteer chairperson of the Southern California Chapter’s Golden Circle and incoming member of the National MS Society Board of Trustees. “This past year showed that even in the most challenging economic times, people can connect with the fact that MS doesn’t stop — and neither do we. Golden Circle is an avenue for more money to be raised for the mission.”
Golden Circle membership benefits include: n Invitations to exclusive local and
national events
n Opportunities to connect with
chapter and national society leadership
n Invitations to hear directly from
world-renowned scientists about the latest in MS research
n The opportunity to connect with
other Golden Circle members who share the passion to create a world free from MS
Learn more To learn more about the Golden Circle, contact Shannon Wolkerstorfer at swolkerstorfer@MSsociety.org or 612-335-7928.
Support MS this holiday season One way to ensure your holiday gifts won’t be exchanged or lost in the closet is to make a gift to the MS Society in honor of a loved one. Plus, your gift will work hard all year long to support people living with MS and
help find a cure. Visit www.MSsociety.org and click “Donate” or call Jane Piotrowski at 612-335-7969. Your loved one will receive a card letting them know a gift was made in his or her honor.
TOLL FREE NUMBER 1 800 344 4867
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events
2010 events Mark your calendar. MS Sno Rally Snowmobile Tour Feb. 18 to 21 An all-inclusive snowmobile weekend in Cable, Wis.
JOIN THE MOVEMENT
Walk MS: Christopher & Banks Walk May 2 Walks held in 17 communities throughout Minnesota and western Wisconsin. Bike MS: Allianz Twin Cities Ride May 8 Choose a 30- or 60-mile route. Bike MS: MS 150 Ride June 11 to 13 Two-day, 150-mile ride from Proctor, Minn., to the Twin Cities.
We asked… Do you have MS and participate in an MS Society event? If so, tell us why. “Because I have MS, my family, friends and I do Walk MS every year — not only to support me, but others who have MS. And I walk for those who cannot because I can, with or without the crutches.” — Tracy Lussier
Bike MS: Star Tribune The Ride Across Minnesota July 25 to 30 A five-day cycling vacation featuring the very best of Minnesota. On the Move Luncheon August 2010 A benefit luncheon and silent auction. Ride MS: Motorcycle Tour Aug. 14 and 15 A weekend motorcycle tour. Challenge Walk MS: Twin Cities Sept. 24 to 26 A weekend walking event in the Twin Cities metro.
Register today! Sign up at www.MSsociety.org. 14
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CORPORATE SPOTLIGHT
Luther Westside Volkswagen earns Corporate Star Award Burnsville Volkswagen donated a VW Routan to the chapter — complete with a Bike MS promotional vinyl wrap — to use as a “moving billboard” when driving to community events and other activities chapter wide.
At the annual Sylvies awards banquet, Nov. 21 in Bloomington, Minn., the National Multiple Luther Westside serves as the official car sponsor Sclerosis Society recognized 18 outstanding of Bike MS, donating more than 20 vehicles this corporate partners who have contributed $10,000 or more to support the MS movement. summer alone. The company also sponsored two rest stops on the Larkin In addition, Luther Westside Hoffman MS 150 Ride, displayed Volkswagen earned special Bike MS materials in its showroom, recognition for its exceptional participated in MS Awareness commitment to the society Week activities, donated a as this year’s recipient of the German-engineered Volkswagen Corporate Star Award. bicycle as a prize and recruited Under the leadership of Steve a team. Hendricks, general manager The Bike MS van made an and 22-year MS 150 appearance at a Minnesota Twins veteran, Luther Westside game at the Metrodome in 2009. Volkswagen and Luther
UCare grant helps fund healthy living programs
The National MS Society, Minnesota Chapter recently received a grant from UCare — a Minnesota-based nonprofit health plan — to support chapter programs promoting healthy living. “Living Well with MS” programs include exercise classes such as water exercise, Yoga and Tai Chi Chih; MS Fitness Clubs in Minneapolis and Rochester; the MS Fitness
Team; and healthy nutrition education. This core series of programs helps people living with MS maintain physical activity, good health and maximum independence. As part of its commitment to helping people with MS maintain good health, UCare will present a healthy living tip in the “Living Well with MS” section of each MS Connection issue.
Check it out See Page 12 for this issue’s healthy living tip.
TOLL FREE NUMBER 1 800 344 4867
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research
Where we stand in research: challenges and opportunities Dr. John R. Richert It’s an exciting time in MS research. How are we planning to maintain critical discovery in such a challenging economic environment?
n The definitive scan for all common MS-related
First, we are moving ahead. This year alone, we’re providing more than $33.5 million to support 345 new and ongoing projects in our core research portfolio, plus $1.5 million for Fast Forward, our drug development subsidiary, which is also attracting its own new funding streams. Thanks to the efforts of our MS activists, an additional $5 million has been specifically set aside for MS research out of the 2009 Department of Defense budget.
And finally, we are prioritizing our spending to focus on what’s most important. Our choices — which we believe will be temporary — include:
Second, we have three clear research goals — stop MS, reverse the damage, and end MS forever. Here are some exciting projects making headway in our three-pronged approach: n Our portfolio of projects focusing on immune
aspects of MS, in particular the large-scale clinical trial of a pregnancy hormone, estriol, and Fast Forward’s recent investments in promising immune-modulating molecules are opening up new avenues to stop MS.
n Our research on rehabilitation and health
care delivery, and our four international teams working on nervous system protection and repair (funded by the Promise: 2010 campaign) are making tremendous progress, including plans for small-scale clinical trials to test the safety of cell therapy. These are examples of strategies to reverse the damage.
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genes being performed by the International MS Genetics Consortium promises a wealth of data. This international collaboration launched by society funding has the potential to help us find ways to end MS forever.
n To continue to fund our discovery research
portfolio and fellowships at reduced levels.
n To place some research award programs on
hold.
We hope that the reduction will be of short duration. Should it become necessary to continue on this path, we know that some established researchers and some promising young scientists will abandon MS to move into areas where funding is more plentiful. We have to do everything possible to keep them in the MS field. We are poised to make quantum leaps forward. Exciting new technologies, like gene chips, proteomics, and new imaging techniques are allowing scientists to visit age-old questions about MS in new ways. Now more than ever, we need the flexibility and resources to pursue the most promising leads. Each of us plays a crucial role in fueling MS research and ensuring that the brightest minds continue to pursue the answers that we so anxiously await. Now is the time when each of us must take stock of our own priorities and ask, “What more can I do?” and “Who else do I know who could help?” Please act now!
research
Research pipeline Dr. Hank Balfour is a Professor of Pediatrics in the Division of Infectious Diseases and Professor of Laboratory Medicine and Pathology and serves as Medical Dr. Hank Balfour Director at the University of Minnesota, Fairview Clinical Virology Laboratory. In an interview with the chapter, Balfour discusses the unique connection between MS and the Epstein-Barr Virus. How long have you been studying infectious disease? In 1972 I established the University of Minnesota’s clinical virology lab. I was approached by transplant surgeons who noticed their immuno-suppressed patients were more susceptible to viral infections , such as the Epstein-Barr virus (EBV), after transplants. I began studying severe posttransplant EBV and my interest was piqued. What is EBV? It is a herpesvirus known to cause infectious mononucleosis. Most people have been exposed to the virus. EBV becomes dormant in immune-system cells and can be re-activated at a later date. What does this have to do with MS? Researchers have seen a link between a history of mono and developing MS. There is a certain EBV antibody that is much higher in people with MS.
Tell me about your current research. We are looking at college freshmen with no history of the EBV antibody. We follow them throughout their college career to learn why some get mono whereas others become infected by EBV but never get sick, and others never get infected at all. What can you learn from this study? We can determine the factors that protect people and make others susceptible to developing mono. By looking at the virology and immunology in our subjects we can more easily define what “normal” is and then apply it to people with MS. What are some ways these findings can help people with MS? Two things can happen. If we are able to develop a vaccine against EBV, it may protect against MS. Plus, if we learn EBV is active during an MS relapse, we could use an antiviral drug for EBV to prevent or lessen the severity of the relapse. What are the next steps? We are still working to get funding to study people with MS. Until then, we ask patients coming in for other MS studies and tests if we can collect blood, saliva and spinal fluid to study for the EBV project. This very important research has the potential to help us understand and treat MS. What do you do when you’re not doing research? Fishing is my favorite thing to do when I’m not in the office. TOLL FREE NUMBER 1 800 344 4867
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What do we plan to do? We will work with legislators to introduce a bill to lower prescription co-pays or cap monthly out-of-pocket expenses for these drugs.
Do any of these issues affect you?
Caregiver Support
n Write a letter to your health plan expressing
n Write, call or visit your legislator and share
your story. We can even help set up your visit.
your concerns. Family caregivers provide more than 80 percent of all long-term care services and should receive n Contact the MS Society with your story. We will put you in touch with resources and help more support. Without family caregivers, make your voice heard. thousands of elderly people and people with disabilities and chronic illnesses would be in n Send a letter to the editor of your local publicly-funded institutions. To ensure people newspaper. who need care continue to receive it from n Visit the “Take Action” section of family members, caregivers need support and MSsociety.org regularly for news updates access to respite care services. and to sign up to receive Action Alert e-mails. What do we plan to do? n Become an activist leader in your community. Contact Jenna to learn more at 612-335-7981. There is strength in numbers. We will identify partners who share our vision and can work with us to explore caregiver support. Also, Be an unlikely activist we will continue to direct caregiver support options such as property tax credits for family Sylvia Lawry was an unlikely activist. In 1945 caregivers who provide care in their homes. when her brother showed worsening MS
It’s becoming increasingly hard for people with MS to access physical, occupational and speech therapies because of caps and coverage limits.
symptoms, she placed a classified ad in the New York Times asking for help from anyone who had experience with the disease. After an outpouring of responses, she realized the need for more organization. One year later in 1946, the National MS Society was born.
What do we plan to do? We are exploring the possibility of legislation to eliminate or set different cap limits so people with MS can maintain the care they need.
She was just one woman with a drive to help her brother get the resources he needed. She never set out to be an activist, but she certainly became one.
Access to physical, occupational and speech therapy
In the months to come you will learn about people just like you in the chapter’s “Unlikely Activist” campaign. Stay tuned to www.MSsociety.org for stories, photos, downloads and other tools you can use to make changes in your community. 18
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JOIN THE MOVEMENT: nationalMSsociety.org
CALENDAR
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Managing MS, Bloomington
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Connect Locally — MS and depression, Oakdale
Jan. 9
Care Partner Retreat, Bloomington
Feb. 18
Connect Locally — Clinical Trials, Cambridge
Feb. 18-21
MS Sno Rally Snowmobile Tour, Cable, Wis.
March 8-14
MS Awareness Week
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 Dec. 15, Jan. 19 and Feb. 16 Employment discrimination/private disability consultations Denise Tataryn, attorney at law Dec. 3, Jan.7, and Feb. 4
For information or to register Programs Contact registration line: 612-335-7900 800-582-5296 Telephone consultations Contact Sarah or Heather: 612-335-7900 Walk MS, Bike MS and motorsport events Contact Cortney: 612-335-7971
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research
Panel recommends FDA approve Fampridine-SR for walking difficulty in MS In October a U.S. Food and Drug Administration advisory committee recommended the agency approve marketing of Fampridine-SR for its ability to improve walking speed in people with any type of multiple sclerosis. While there are six FDA-approved disease-modifying therapies that are at least partially effective treating some forms of the disease, as well as rehabilitation and symptomatic treatments for some symptoms, there are currently no treatments specifically for MS-related difficulty walking. The agency is expected to make a final decision on whether to approve the drug for market by Jan. 22.
Visit MS Connection news at www.MSsociety.org and click “Research.�