MS Connection, spring 2009

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GivingPage 12

EventsPage 10

ResearchPage 14

Corporate SpotlightPage 16

Get ready to “move it” during MS Awareness Week March 2 to 8. This year’s theme — move it. — encourages people nationwide to

demonstrate their commitment to a world free of multiple sclerosis. This special MS Awareness Week issue of the MS Connection highlights six key ways you can make a difference not only during MS Awareness Week, but all year long.

WalkSee Page 11 for information about Walk MS: Christopher & Banks Walk presented by Anchor Bank and Challenge Walk MS: Twin Cities, and meet Natasha Frechette, the official 2009 ambassador for Walk MS Twin Cities.

BikeCheck out Page 10 to learn everything you need to know about the Minnesota Chapter’s 2009 Bike MS series and meet Birgit Lillehei — Bike MS: Larkin Hoffman MS 150 Ride 2009 Ambassador.

M O V I N G T O W A R D A W O R L D F R E E O F M S Spring 2009 Volume 22 • Issue 1 Minnesota Chapter

AdvocateLearn about critical public policy issues affecting Minnesotans with MS and what you can do to create change on Page 7.

LearnBy staying informed about the latest in MS research and other developments, you have the power to engage others in the movement. Check out the news sections on Pages 4 through 6, Living with MS on Pages 8 and 9 and research on Pages 14 and 15.

MS Awareness Week

MS Awareness WeekMarch 2-8, 2009

612-335-7900 / 800-582-5296

Publication of the National Multiple Sclerosis Society, Minnesota Chapter 200 12th Ave. S. Minneapolis, MN 55415

Chair Karen Larson

Chapter President Maureen Reeder

Newsletter Editor Emily Wilson

E-mail [email protected]

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. Sponsorship of society programs or events does not connote that the National Multiple Sclerosis Society recognizes superiority in products or services provided by the sponsoring entity over other entities providing like or similar products or services.

To obtain an audio tape of MS Connection, call Timothy Holtz at the Minnesota Chapter.

© 2008 National Multiple Sclerosis Society, Minnesota Chapter

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.

2 JOIN THE MOVEMENT: nationalMSsociety.org

Can you help us?The Minnesota Chapter is always looking for in-kind donations. If you are able to donate any items on the list below, please call the chapter.

Office suppliesn digital cameras

n DVD player

n high quality color printer

n fax machine

Other suppliesn Amazon.com gift

cards for Library

n baby monitors

n bagels/coffee/box lunches

n baseball decorations

n catheter kit/Foley catheter

n Chux bed protector

n concert/sport/event tickets and gift cards

n first aid supplies (call for details)

n gas/grocery/other gift cards to help families purchase necessities

n hats, shirts and other wearable gifts

n kitchen supplies

n mallets and hammers

n Metro Mobility tickets

n old trophies

n phone cards for Mentor Program

n pill boxes

n pop-up tents

n non latex gloves

n sports memorabillia

n sweatshirts (one color, various sizes)

n turning sheets

n MS Camp entertainment

3TOLL FREE NUMBER 800 582 5296

At the National Multiple Sclerosis Society, we talk a lot about

moving. That’s because for people living with MS, the ability to move is not always a guarantee.

Sometimes the disease makes it difficult for people to move their arms or legs. Sometimes it slows movement within the brain, making it hard to think or speak. And sometimes it prevents people from moving forward in their career or pursuing their goals.

That’s why the MS movement matters — to make sure MS doesn’t stop people from moving. And that’s why, during MS Awareness Week March 2 to 8, the National MS Society asks you to “move it” by doing simple things throughout the week to help end the disease and spread the word about MS in your communities.

MS Awareness Week is an important time to take our commitment to the MS movement to a new level and engage more people in our work to end the disease. In this issue of

the MS Connection, you’ll read about the many different ways to do something about MS now, whether you register for a Walk MS or Bike MS event, e-mail your legislator about a public policy issue affecting people with disabilities, volunteer, make a donation to the society or educate people in your community about MS.

Although it’s only seven days long, the things we do during MS Awareness Week can have a critical impact for so much longer. Just think, if you spend five minutes with one person explaining how MS affects you or someone you know, imagine what that one person could do to help the movement not only during MS Awareness Week but for months and years to come.

During this important week, we ask you to “move it” in whatever way you can, no matter how big or small. Because whatever you do — it matters.

Be sure to visit MSsociety.org for an online toolkit full of tools, resources and ideas to help you make an impact during MS Awareness Week. Let’s “move it” together!

How will you “move it” during MS Awareness Week?

Note from the board

Karen Larson Board Chair

MS Awareness Week is March 2 to 8

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What’s on MS Connection Online right now?n The “yuck” factor

Dr. John Fleming calls it the “yuck factor.” But people with MS might happily drink parasitic worm eggs if it meant a reduction in disease activity.

n Smart tax prep for people with MS Taxes pay for many things we all need. But that doesn’t mean any of us should pay a penny more than the law requires.

When you see this icon, it

means there’s expanded coverage of this topic online. Visit MSsociety.org and check out the news section on the right-hand side.

Access life skills onlineThe Web site livinglifetothefull.com offers a free online course about life skills that can help people change negative patterns of thinking. The course is not intended to substitute speaking with a professional therapist, but can help people who are hesitant about getting help — whether because of time, money, or simply not knowing where to start. It also serves as an introduction to cognitive behavior therapy. Module topics range from practical problem solving to building confidence.

“MS is an unpredictable disease, and that unpredictability can cause a world of anxious feelings,” said Rosalind Kalb, Ph.D., vice president of the National MS Society’s Professional Resource Center. “Living Life to the Full won’t make that go away. However, it helps you identify any self-defeating thought patterns that aren’t getting you anywhere,” said Kalb.

Learn more at livinglifetothefull.com

Pentair awards $50,000 grant to scholarship programThe Pentair Foundation recently

awarded a $50,000 grant to support the National MS Society, Minnesota Chapter Scholarship Program. Of the foundation’s grant, half will be allocated to funding 2009 scholarships and the other half will help

the chapter begin creating an endowment to ensure funding for scholarships into the future. In 2008 the chapter granted 39 scholarships — totaling $80,000 — to help college-bound students touched by MS in Minnesota and western Wisconsin pursue post-secondary education.


Amendment restoring ADA protections passedMS activists and others in the disability rights movement changed the course of history when they helped push the ADA Amendments Act through Congress. The act became effective Jan. 1, 2009, bringing millions of people back under the protection of the Americans with Disabilities Act of 1990. The ADA was designed to ensure reasonable accommodations in the workplace for all people with disabilities. But over time, court rulings narrowed the definition of “disability” to exclude those who could “control their symptoms.”

The new act reverses four Supreme Court decisions that had eroded ADA coverage for people with MS and other conditions that are controlled by medication, are episodic and/or do not always severely restrict major life activities. Now, courts may not consider “mitigating measures,” such as prescription

drugs, and the new law says “an impairment that is episodic or in remission is a disability if it would substantially limit a major life activity when active.”

To learn more about this historic bill, and the protections it provides, visit adabill.com.

and all news coverage related to MS in the chapter area, but we can’t do it alone. Please help us out by mailing newspaper clippings or e-mailing Web links or, if you heard something on the radio or T.V., just call or e-mail to let us know. Any MS-related news coverage can be sent to attn: Emily Wilson, National MS Society, Minnesota Chapter, 200 12th Ave. S., Minneapolis, MN 55415, or [email protected], or call 612-335-7931.

Do you ever come across an article in your local newspaper about multiple sclerosis or the MS Society?

Have you heard or seen a story about MS on a local television or radio station? If so, please let the National MS Society, Minnesota Chapter know. We like to stay abreast of any

Have you seen MS in the news? Let us know.

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Chapter receives Access Award for Kingsley Commons

Click onto MS Learn Online®

CHOICE Magazine Listening provides an opportunity for people with disabilities and vision problems to keep up with the best in current magazine writing. Produced on two four-track cassette tapes six times a year, CHOICE provides unabridged articles, short stories, poetry and interviews from more than 100 magazines and other periodicals. CHOICE Magazine Listening is available

The Minnesota State Council on Disability recently presented the National MS Society, Minnesota Chapter with the Access Award for the Kingsley Commons project — Minnesota’s first housing development designed specifically for people with MS. The Access Award recognizes creative and outstanding innovations that eliminate

MS Learn Online® celebrates its 10th year of online educational programs with a slew of new features and an all-new player. The upgrade, funded in part by Teva Neuroscience and EMD Serono/Pfizer, Inc., includes round-the-clock information covering a variety of topics including MS and the workplace, pediatric MS, medical self-advocacy, progressive MS, parenting with MS and more.

The new player features three programming channels:

n The Feature Presentation, a 10- to 12-minute webcast on a range of topics. New presentations go live the first and third Thursday of each month.

n The Daily Minute, a one-minute factoid about MS every day of the week.

n A once-a-week Q&A where an MS Learn Online expert answers viewers’ questions. E-mail [email protected].

The new player launches when you click any topic at nationalMSsociety.org/mslearnonline. It works best with Microsoft Windows; Apple users may need to buy the program WMV Player Pro at flip4mac.com/wmv.htm to use the player. Visitors can download a PDF or an mp3 podcast. E-mail [email protected] for notifications of upcoming programs.

free of charge to anyone who is experiencing vision loss or has other disabilities that limit or prevent reading standard print. A four-track tape player is required to listen to the tapes, but is provided free of charge through the Library of Congress. To learn about subscribing and obtaining the free tape player visit choicemagazinelistening.org or call 888-724-6423.

or reduce barriers within the community for people with disabilities. The project also received the Metropolitan Consortium of Community Developers’ Community Development Hall of Fame Award for innovative projects and programs that provide models for important community development initiatives across the region and country.


State’s $5 billion deficit means MS activists need to speak up

During Minnesota’s 2009 legislative session, the National MS Society, Minnesota Chapter will work to pass the Family Caregiver Tax Credit Bill

and the Affordable Co-Pays for MS Disease-Modifying Prescription Drugs Bill. The chapter also plans to vigilantly monitor budget cuts that are likely to come as the state deals with a $5 billion deficit.

The chapter also will track how the unallotment of funds, or spending reductions, to Health and Human Services and city and county aid directly affect the services that many people with multiple sclerosis rely on.

In order to make the biggest possible impact at the Capitol this year, the Minnesota Chapter is calling on MS activists to do whatever they can to help ensure people with MS across the state continue to have access to critical services.

Visit the Advocacy page at www.MSsociety.org to access the Activist Toolkit, which includes tools, resources and information to help you become an effective activist.

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Six things you can do right now

1. Learn as much as you can about the services you use and depend on. Keep track of news in your area that relates to MS or your legislator, and sign up for MS Action Alerts at www.MSsociety.org.

2. Contact your legislator and let him or her know about the issues that impact people with MS. Write a letter, call his or her office, or, with the help of the MS Society, set up a time to meet your legislator in person.

3. Engage friends and family in the legislative process and the MS Society’s legislative priorities by discussing important issues affecting people with MS.

4. Write a letter to the editor of your local newspaper. Letters to the editor are useful advocacy tools because they draw the attention of your legislator and educate people in your community who may not have a connection to MS.

5. Ask your legislator to attend a meeting with other people living with MS in your community. Group meetings can make a big impact since they give your legislator an opportunity to hear first-hand about the specific problems and issues constituents with MS face.

6. Attend a rally supporting services for people with disabilities in Minnesota at noon, Saturday, March 7, at the state Capitol in St. Paul, 75 Rev. Martin Luther King Jr. Blvd. For more information, visit arrm.org/summit.


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During difficult economic times like these, everyone faces challenges. But for people living with a chronic illness, these challenges

can be even greater.

In addition to providing emergency financial assistance and Independent Living Grants, the Minnesota Chapter offers free telephone consultations with volunteer financial counselors to address topics from basic budgeting to retirement planning. The chapter also hosts the Surviving the Economy program, March 14, in Burnsville, Minn. Call the chapter to learn more.

Seven tips to help trim spendingn Consider a more economical cell

phone plan, Internet service or cable T.V.

n Look into free or reduced-price school lunches at your child’s school.

n Ask utilities about hardship payment plans. Visit www.staywarm.mn.gov or contact your utility company.

n If you’re in trouble, talk to your mortgage company right away. Don’t wait until you’re months behind on your payments to talk to your lender. Tell them about your situation right away.

n Shop for prescription deals. While MS disease-modifying drugs do not have generic versions available, check to see if there’s a generic alternative for any other prescriptions you have.

n Check for free or used goods. Check out Freecycle.org or Craigslist.com, or if you have to buy new, visit pricegrabber.com for price comparisons.

n Pay down credit card debt as quickly as possible. If the minimum monthly payment is $100, pay $150 or $200. If you have more than one card, use the one with the lowest interest rate, and put others away.

n Use local resources. Contact the University of Minnesota Extension for information about managing family resources in a downturn at 612-624-1786 or www.extension.umn.edu/family/00053.html.

Spending tips courtesy of “Dollars & Sense” magazine and Helen Kim Bass, C.S.A., MetDESK Specialist at New England Financial.

Get smart about taxesDeductions, exclusions and credits that may apply to you

Download the Internal Revenue Service Publication 907, Tax Highlights for Persons with Disabilities, at www.irs.gov or call 800-829-3676.

Read more about smart tax prep at MS Connection Online.

Property tax break for homeowners with disabilities

If you are a homeowner and have a disability, or live with a relative with a disability, you may be eligible for a Special Homestead Classification, which will ease your tax burden. To learn more or apply, visit www.taxes.state.mn.us/taxes/property.

For more money tips, visit the Living with MS section at nationalMSsociety.org and click on “Insurance and Money Matters.”


Breathe easier in 2009

Among the most common New Year’s resolutions are losing weight, trying something new and dropping a bad habit — including smoking.

Smoking is a tough habit to kick, but fortunately there are many smoking cessation resources available.

As an organization dedicated to the well-being of people living with multiple sclerosis, the National MS Society, Minnesota Chapter is offering smoking cessation informational sessions at various educational programs (call the chapter for details) and a list of resources at MSsociety.org. And new this year, the four-day MS Camp programs will be smoke free.

Find your reason to quitAccording to the Office of the U.S. Surgeon General, smokers generally have higher rates of diseases like lung cancer, heart disease and emphysema than nonsmokers. But people living with a chronic illness like MS may be at an even greater risk. Some studies suggest a relationship between smoking and the onset and worsening of MS.

Whatever your reason to quit, it’s important to become familiar with available resources and develop your own plan of action.

Where do I start?Minnesotans have access to a free cessation program through Quit Plan (quitplan.com), which offers information about treatment options, interactive online tools to help you develop a personalized plan and expert advice.

For more resources, visit www.mplsheart.org/education/smokingcess. Wisconsin residents can visit www.lungwi.org.

Written by Trent Ecker, a media and marketing intern and recent graduate of Minnesota State University, Mankato.

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8 tips to get you started

1. List the reasons it would be hard to quit then come up with alternative solutions. Example: Smoking relieves my stress. Go outside, relax and take in fresh air for five minutes.

2. Talk to your doctor about over-the-counter and prescription medications.

3. Take time to plan. Pick your quit date a few weeks ahead of time and mark it on the calendar. Try to pick a day when your stress level will be low.

4. Carry cinnamon toothpicks. Every time you crave a cigarette pop in a toothpick instead.

5. Think of people and things you love when you want a cigarette. Picture yourself hugging your children or spouse or laying on the beach.

6. Eat a balanced diet, drink lots of water and get plenty of sleep.

7. Get some exercise every day.

8. Ask family, friends and co-workers for their help and support. Having someone to take a walk with or just listen can give a needed boost.


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North to south for 30 yearsBike MS: Larkin Hoffman MS 150 Ride — a two-day, 150-mile ride from Proctor, Minn., to the Twin Cities — marks its 30th year in 2009. The biggest weekend ride in Minnesota, the Larkin Hoffman MS 150 brings thousands of cyclists together each year to enjoy a scenic route featuring the Willard Munger Trail and raise funds to create a world free of MS. The Larkin Hoffman MS 150 Ride 2009 is set for June 12 to 14.

20th annual Star Tribune TRAM Another well-known cycling event, Star Tribune The Ride Across Minnesota, celebrates 20 years in 2009. This year’s five-day ride — July 26 to 31 — takes cyclists back to the beginning, returning to the original border-to-border route of 1990. Cyclists start in Ortonville, Minn., and travel

through Montevideo, Minn., Redwood Falls, Minn., St. Peter, Minn., and New Prague, Minn., before crossing the finish line in Welch Village near Red Wing, Minn.

Stay close to home for the one-day rideNot sure about taking on a weekend or weeklong bike ride? Start simple with Bike MS: Allianz Twin Cities Ride, May 9. The one-day, 30- or 60-mile ride starts and ends at the Maplewood Community Center in Maplewood, Minn., and features the Gateway Trail.

Learn more or register for a 2009 Bike MS event at BikeMSminnesota.org.

Birgit Lillehei, Bike MS: Larkin

Hoffman MS 150 Ride 2009 Ambassador

Moving forward in a new wayWhen Birgit Lillehei was diagnosed with MS in 2003, she felt relieved

to finally have an answer for all the strange symptoms she was experiencing. “I also realized this disease would cause me to move forward in a new way,” Lillehei said. “MS has taught me to slow down, enjoy the little things and never take anything for granted.”

The year she was diagnosed, Lillehei participated in three MS Society events including Bike MS: Larkin Hoffman MS 150 Ride. “I remember feeling grateful and overwhelmed by the amazing people who were riding their bikes to help people like me,” she said.

Cyclists made their way from Proctor to the Twin Cities during last year’s Bike MS: Larkin Hoffman MS 150 Ride.

Natasha Frechette, Walk MS: Christopher & Banks Twin Cities Walk 2009 Ambassador

Natasha Frechette, age 28 of Columbia Heights, Minn., isn’t one to sit still for too long. In October 2007 she was diagnosed with multiple

sclerosis, and just one week later, she registered as a team captain for Walk MS: Christopher & Banks Walk presented by Anchor Bank.

By November, 45 of her friends and family had joined her team, which she named Delicate Flowers.

Frechette has kept a positive outlook through the challenges of her diagnosis. “Losing independence is tough,” she said. “But working harder at everything I do makes me stronger.”

Frechette plans to give it her all at this year’s Walk MS: Christopher & Banks Walk. Last year she walked three of the six miles and has made a goal for herself this year to conquer the entire route.

“Crossing the finish line was an amazing and powerful experience,” she said. “Walk MS was the perfect way to get involved after my diagnosis.”

Taking action from the very beginning


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This year marks the 20th anniversary for Walk MS: Christopher & Banks Walk presented by Anchor Bank, a one-day walk to raise funds to

support multiple sclerosis research and address the challenges of families living with the disease in the National MS Society, Minnesota Chapter area. Walk MS 2009 is Sunday, May 3, in 17 sites throughout Minnesota and western Wisconsin.

The Minnesota Chapter held the very first Walk MS event in 1988, and today more than 600 annual National MS Society Walk MS events are held throughout the country. Since its inception, Walk MS has raised a total of more than $425 million nationwide.

In 2008, more than 9,000 people participated in the Minnesota Chapter’s Christopher & Banks Walk presented by Anchor Bank, raising more than $2 million locally. To find a Walk MS event near you, visit walkMS.org or call 800-582-5296.

Need a bigger challenge?Challenge Walk MS: Twin Cities 2009 is a three-day, 50-mile walk Sept. 11 to 13 in the Twin Cities. New this year the Minnesota Chapter announces a two-day, 30-mile option. In 2008, more than 200 people accepted the challenge and raised more than $500,000 to help end MS. To learn more or register, visit www.MSsociety.org or call 800-582-5296.

In 2008, more than 9,000 people participated in Walk MS: Christopher & Banks Walk presented by Anchor Bank, raising more than $2 million.

You can also set up a tribute fund at MSsociety.org to help celebrate a special occasion like a wedding, birthday or anniversary. Setting up a tribute fund is a great way to raise funds for the society and spread awareness about the disease. You can personalize your page by uploading photos, and e-mail a link to your family and friends asking for their support. Each time someone makes a donation to your tribute fund, you receive an e-mail alerting you that a gift has been made and the donor receives a thank-you e-mail, which can be used as a tax receipt.

Make a planned giftYou can make a meaningful gift without giving money now by making a planned gift to the chapter. Planned gifts include leaving the MS Society in your will or including us as a beneficiary on your retirement plan. Planned gift donors are members of the Lawry Circle and receive special benefits and recognition.

To learn more about giving options, visit MSsociety.org or contact Rachel Hughes at 612-335-7965 or [email protected].

Making a gift to the National Multiple Sclerosis Society, Minnesota Chapter is a simple way to help fuel the movement to create a world free of MS. Not only is it easy to donate, but there are many different options available as well. Think about what giving option best meets your charitable goals.

Become a sustaining donorVisit www.MSsociety.org and set up a monthly gift using your credit or debit card. Donors who make gifts totaling $250 or more throughout the year are recognized as members of the Minnesota Chapter’s Discovery Circle and receive special benefits.

Make a tax-free gift through your IRAMake a tax free gift from your Individual Retirement Account. If you are age 70 ½, you can make a charitable IRA rollover directly to the Minnesota Chapter without paying taxes on the distribution. Take advantage of this opportunity from now until Dec. 31, 2009.

The perfect giftDon’t worry about finding the perfect gift or way to say “thank you.” Honor someone special with a gift to the Minnesota Chapter. A card will be sent to them letting them know that a gift has been made in their name.


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Do what you love, make an impact

Volunteering for the National MS Society, Minnesota Chapter is a great way to have fun, meet new people and share your unique talents.

The most important thing to know about volunteering is that you can truly shape your own experience based on your interests and skills. The Minnesota Chapter has literally thousands of volunteer opportunities that cover a wide range of jobs. Listed below are just some of the many ways to join the MS movement as a volunteer.

Do you have an artistic eye? Help arrange gift baskets for the silent auction at the On the Move Luncheon.

Do you work in the health care field? Volunteer as a nurse at MS Camp or as a first aid volunteer at a Bike MS or Walk MS rest stop.

Are you an organized person? Do you enjoy talking on the phone? Help out with special projects at the Minnesota Chapter office, like contacting program participants or helping maintain the Lending Library.

Do you enjoy the outdoors? Volunteer for a chapter fundraising event — whether it’s cheering on participants at the finish line or making peanut butter and jelly sandwiches at rest stops.

Do you prefer to volunteer from the comfort of your own home? Be a volunteer book critic for publications offered through the chapter’s Lending Library.

To stay informed about upcoming volunteer opportunities, visit MSsociety.org, click on Volunteer and let us know about your unique interests and skills by filling out an interest form. You can also sign up to receive an e-newsletter just for volunteers.

Volunteer opportunities

MS Camp May 3-8 and Aug. 23-28 Camp Courage, Maple Lake

Walk MS: Christopher & Banks Walk presented by Anchor Bank May 3 17 sites in Minnesota and western Wisconsin Bike MS: Allianz Twin Cities Ride May 9 Maplewood Bike MS: Larkin Hoffman MS 150 Ride June 12-14 Proctor to the Twin Cities with an overnight in Hinckley MS Youth Camp June 13-19 Finland Bike MS: Star Tribune TRAM Ride July 26-31 Ortonville, Montevideo, Redwood Falls, St. Peter, New Prague and Welch Village

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Think tank examines how to turn lab discoveries into therapiesWhat are the barriers to finding therapies to stop and reverse the nervous system injury caused by multiple sclerosis? A think tank held by Fast Forward, LLC, the National MS Society’s drug discovery venture, in collaboration with Harvard’s NeuroDiscovery Center, gathered representatives from venture capital firms, voluntary health and patient advocacy groups, pharmaceutical and biotechnology companies, and university-based research scientists to share information and ideas around this issue.

Learn more about the think tank at www.FastForward.org.

Study shows oral drug more effective than Avonex in reducing relapse rateIn a one-year study involving 1,292 people with relapsing-remitting MS, the experimental oral drug Fingolimod reduced relapses significantly more than Avonex®.

These initial results are reported in a press release from Novartis, which notes that analysis of these data is ongoing and that two other large-scale, phase three trials of the drug are ongoing.

First-ever Tykeson Fellows Conference on MSThe first-ever Tykeson Fellows Conference on MS, held in November, was designed to promote the sharing of research information among National MS Society fellows and faculty awardees, develop a sense of community among investigators, stimulate new ideas and strengthen the commitment to MS research. Participants included not only young people who hold current research and clinical fellowships from the society, but also research fellows of the Canadian MS Society and 10 pre-doctoral students focusing on MS.

Great strides moved MS research forward during 2008The year saw rapid progress in virtually every field of science and medicine that affects our understanding of MS. In 2008 the National MS Society invested nearly $50 million to support more than 440 new and ongoing research projects to prevent, treat and cure MS. Significant advances have been made in both clinical and laboratory studies in MS. In addition, more than 130 clinical trials are underway around the world — with more than a dozen final-phase trials of new therapies including some oral treatments. A recap of 2008 research highlights is now available online.

Read the full report on these and other studies at MS Connection Online.


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Research pipeline


Dr. Gary Birnbaum — neurologist at the Minneapolis

Clinic of Neurology and director of the clinic’s MS Treatment and Research Center — volunteers with the

Minnesota Chapter, serving on the board of trustees and on the Clinical Advisory Committee. He’s also a volunteer research advocate, ensuring people with MS understand the society’s role in moving research forward. The chapter caught up with Dr. Birnbaum to discuss the exciting future of MS research right before he left for New York for the society’s Clinical Care Committee meeting.

What is a promising area of MS research people should know about?

There is increasing acceptance of the concept that the tissue destruction occurring in MS is the result of two disease processes.

What do you mean by two processes?

First, there is the acute inflammatory phase, which is the most well known. I like to think of this phase as little “bonfires” of inflammation occurring in a person’s central nervous system causing attacks. There is also another disease process happening concurrently when the acute attack subsides. This involves a more chronic, low-grade inflammation, which is more generalized, even in areas that appear normal on MRI. I liken this process to “smoldering embers” versus the acute “bonfires.”

Tell me more about the chronic inflammation phase.

We are just beginning to understand the meaning of it. It may be a contributing factor to brain atrophy, or loss of brain tissue. This chronic “smoldering” damage is a significant component in primary and secondary MS.

What can be done about the chronic damage?

Unfortunately none of the disease-modifying therapies on the market are able to have an effect on this particular aspect of the disease. These drugs are most effective in treating the acute “bonfire” attacks. Lack of treatment for this chronic, inflammatory phase of MS is extremely frustrating since it can follow the effective treatment of the acute inflammation, and result in slowly progressive disability.

What is on the horizon to address this?

Researchers are investigating what activates macrophages, or microglial cells, which are the cells most involved in this smoldering form of inflammation. For some reason these cells are chronically “turned on” in people with MS and secrete substances that are harmful.

What do you do when you’re not studying MS research?

I am a clinician and have a passion for helping people with MS. Most of my time is spent in that capacity. When I’m not with patients I enjoy fishing, skiing and spending time with my family.

Dr. Gary Birnbaum


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Making a difference, one candle at a time

Shelly Gelhar and her sister, Tracy Lussier, who lives with MS, started the company Soy Candles of Hope with the motto “Making candles to make a difference.” The company gives 10 percent of its sales from the soy candles

back to the MS Society. Gelhar said they’ve received a favorable response from people who are familiar with MS. “For those unfamiliar with MS, it is a way for us to spread awareness about the disease and about what the MS Society is doing about it,” she said. “Tracy and I firmly believe that together, we can make a difference. We might not be the ones to find a cure, but we can certainly be a part of it by giving back and that means a lot to us.”

Calling on old friendsMark Caffrey was diagnosed with multiple sclerosis in 1991. He worked at Target more than 20 years ago but kept in touch with his former co-workers,

including his friend, Greg, who has since been promoted to a senior vice president. When Caffrey learned the Minnesota Chapter was seeking snacks to serve at rest stops on fundraising events, he called Greg. “I knew they would appreciate a good avenue to sample products to a lot of people,” he said. “At the end of the day, Target donated more than 10,000 servings of snacks.”

It never hurts to askThe National Multiple Sclerosis Society, Minnesota Chapter has an impressive list of corporate partners. Do you ever wonder how these companies get involved in the first place? In many cases, all it takes is for one person to step up.

Unexpected supportDavid Waldo, CEO and founder of Private Bank Minnesota, was diagnosed with multiple sclerosis six and a half years ago. He decided to get his company involved with Bike MS: Larkin Hoffman MS 150 Ride.

“At first I was a little guilty being the CEO and asking my employees to support a cause that supports me — but I got over that quick,” Waldo said.

Private Bank Minnesota signed on as a rest stop sponsor and committed to recruiting 12 to 15 employees to volunteer. “I had no idea if we could recruit that many people to drive up north. Then, bang, we were there instantly!” he said. “That was probably close to half of our staff — I was surprised, thrilled, pleased and impressed.”

Mark Caffrey

David Waldo on Bike MS: Larkin Hoffman MS 150 Ride 2008.

Rallying the familyWinton Jones — founder of Anchor Bank — started the Anchor Bank Family Foundation, which his five children now operate. This includes Helen, Christopher and Carl Jones, present Anchor Bank CEO, and Wendy Zehngebot and Julie Becklund, who both live with MS. To engage Anchor Bank employees in a community event, the family rallied their “bank family” around the cause that affects their own family — MS. They agreed to sponsor Walk MS: Christopher & Banks Walk and form a company team. Zehngebot and Becklund announced the sponsorship at an annual employee celebration and asked everyone affected by the disease to raise their hands. “It was a beautiful visualization that we are all truly a family; we are all linked together,” Zehngebot said.


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Anchor Bank’s team “Banking on a Cure” at last year’s Walk MS: Christopher & Banks Walk presented by Anchor Bank.

Wendy Zehngebot offers this advice when seeking support for the MS Society.

I live by my father’s words, “If you don’t ask, you won’t get. Not trying is the failure.” You may be more connected to potential donors than you realize. Here is a list of things to consider.

n Who do you know who can donate to the MS Society?

n Who do you know who lives in a beautiful home who could host a fundraising event?

n Who owns a store that could donate a percentage of sales to MS?

n Who owns a print shop that could print promotional materials for a fundraising event?

Who do you know?

To learn more about sponsorship opportunities, contact Teri Cannon at 612-335-7925 or [email protected].

Read an extended version of this story on MS Connection Online


continued from Page 1

GiveMaking a gift to the society is simple, easy and powerful. Learn about the variety of giving options available on Page 12.

VolunteerVolunteering offers countless ways to use your skills and interests to move us closer to a world free of MS. Not sure what position is right for you? See Page 13.

More ways to move it.During MS Awareness Week, the Minnesota Chapter offers exciting opportunities to volunteer on street teams, advocate for the rights of people living with MS, register for Walk MS and Bike MS events, raise awareness in your communities and more.

Here are some simple things you can do to spread the word about MS during MS Awareness Week March 2 to 8.

n Download Web banners and widgets for your social network pages at www.nationalMSsociety.org.

n Share your story about how you are “moving it” by sending a letter to the editor of your local newspaper (visit www.MSsociety.org and click on “Take action” for letter templates).

n Sign up to volunteer at an upcoming Minnesota Chapter event.

n Form a Bike MS or Walk MS team.

n E-mail a legislator about an issue important to people with MS.

n Tell five people it’s MS Awareness Week and ask them to tell five more people.

n Support the society — every donation moves us closer to a world free of MS.

n Raise MS aWEARness by wearing orange. Need something new? Visit: www.msstoreipp.org.

n Visit www.nationalMSsociety.org every day during MS Awareness Week for new tips and ideas.

Whether you volunteer, bike, walk, advocate, give or learn, every action shows your dedication to the MS movement and helps motivate the potentially millions of people who want to, and can, do something about MS now.

To learn more ways to be a part of MS Awareness Week and encourage others to join you, visit www.MSsociety.org to access an online toolkit full of excellent tools, resources and ideas. You can also visit, www.nationalMSsociety.org, where you will find ways to build the MS movement through actions such as posting your own story, downloading Web banners and more.

To spread the word during MS Awareness Week 2008, Jonathan Wittman rode his bike up and down Nicollet Mall in Minneapolis as a moving billboard.

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March 2–8 MS Awareness Week

March 27–29 Women’s Getaway, Minneapolis

May 3 Walk MS: Christopher & Banks Walk presented by Anchor Bank, 17 sites in Minnesota and western Wisconsin May 4–8 MS Camp, Maple Lake

May 9 Bike MS: Allianz Twin Cities Ride, Maplewood

May 16 Women’s Conference, Plymouth

Telephone consultations

* Telephone consultations are free and by appointment only

Family attorney consultations

Rod Jensen, attorney at law

March 17, April 21 and May 19

Employment consultations

Jennifer Johnson, tips on interviewing, resumes and more


Employment discrimination/private disability consultations

Denise Tataryn, attorney at law

April 2, May 7 and June 4

Financial planning consultations

John Robinson, C.F.P.®, financial advisor


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Programs Contact registration line:

612-335-7970

Telephone consultations Contact Sarah, Jill or Heather:

612-335-7900

Walk MS, Bike MS and motorsport events Contact Cortney: 612-335-7971

FOR INFORMATION OR TO REGISTER

FREE MATTERFOR THE

BLIND ANDHANDICAPPED

200 12th Ave. S.Minneapolis, MN55415-1255

RETURN SERVICE REQUESTED

Blood test could help diagnose MS, predict its courseNational MS Society-funded researchers used a high-tech blood test to identify antibody patterns in blood samples from people with multiple sclerosis, and were able to differentiate between different types of MS and MS patterns of damage. Results could ultimately lead to laboratory tests that help diagnose MS, predict its course and identify the most effective therapies. Drs. Francisco Quintana and Howard Weiner and colleagues from Harvard Medical School, Boston, reported findings that involved a collaboration with Dr. Claudia Lucchinetti, Mayo Clinic, Rochester, Minn. Lucchinetti is lead investigator of the society’s MS Lesion

Project, funded through the Promise: 2010 campaign.

Read the full study at MS Connection Online.

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Documents

MS Connection, spring 2009