MS Connection spring 2010 issue

MOVING TOWARD A WORLD FREE OF MS | SPRING 2010

INSIDE THIS ISSUE

MINNESOTA CHAPTER

News PAGE 7

Living Well with MS PAGE 8

Giving PAGE 10

Research PAGE 16

continued on 8

MS Awareness Week is March 8 to 14, and thousands of people nationwide are gearing up 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 this special week, but all year long.

WALkWalk MS: Christopher & Banks Walk 2010 presented by Walser will be held May 2 in

It’s time to “Move it”

18 communities throughout Minnesota and western Wisconsin. Can’t make it? Walk MS: Anywhere Walk is for anyone who wants to rally for a cure on May 2 but can’t be there in person. Learn about this virtual option and other ways to get involved on Page 14 or visit walkMSmn.org. Plus, learn about the three-day Challenge Walk MS: Twin Cities at ChallengeWalk.org.

BIkEWith three unique rides, the Minnesota Bike MS cycling series offers one-day, two-day and five-day options with routes covering 30 to 300 miles. Whether you ride or volunteer, there are countless opportunities to become a part of the Bike MS experience. Learn more at bikeMSminnesota.org. Plus, learn about the Champions program on Page 6.

AdvOCATEWhat does “activism” mean to you? Believe it or not, we are all MS activists. See Page 12 to read

2 | JOIN THE MOvEMENT: nationalMSsociety.org

612-335-7900 / 800-582-5296PUBLICATION Of THE NATIONAL MULTIPLE SCLEROSIS SOCIETy Minnesota Chapter

Chair • Karen Larson

Chapter President • Maureen Reeder

Newsletter Editor • Emily Wilson

E-mail • [email protected]

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.

© 2010 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 nationalMSsociety.org or 1-800-582-5296 to learn more.

Can you help us?If you are able to make an in-kind donation to the Minnesota Chapter, contact Teri Cannon at 612-335-7925 or [email protected]. To see the full in-kind list, visit MSsociety.org and click “Donate.”

Programs suppliesn goodie bag items

(75) and door prizes

n scrapbooking supplies

Event suppliesn 10-by-10 E-Z UP

Express canopies

n Cowbells and pom pons

n gift cards ($20 or more)

n paper cups (8-ounce, 2,500)

n paper towels

n permanent markers (black, king-size)

n staple guns and staples (T50 or JT22)

n sunscreen (SPF 15 or higher)

n duct tape

Office suppliesn flip video camcorder

n ground coffee (regular and decaf)

n Olympus xD-Picture Card (2 GB)

n personal paper shredders

n printing 10-key calculators

n three-ring tab dividers

n trash bags (16 or 55 gallon)

n sticky notes

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Join us May 2 for Walk MS

Six years ago, I volunteered to work at a rest stop on the Walk MS route. The next year, I brought my oldest son along and he

began his volunteer experience with the walk. The year after that, my youngest son joined in the fun. Since that time, we’ve added a couple of nieces and a girlfriend.

This annual gathering has become a family event for us, much like birthdays and holidays. It’s a time when we all get together, laugh and make a difference in the lives of others. We’ve seen bright sunny days, cold blustery winds and even snow in May. The events of these days have provided plenty of stories to share at family gatherings.

Along the way we’ve met wonderful and determined people who we look forward to visiting with every year as they pass through our rest stop. We’ve also come to realize that many people we know have a connection to MS. My sons and I have been surprised to see acquaintances, friends and teachers along the route. We’ve heard their stories of why they are a part of the movement to end MS, and it has made us even more determined to continue our involvement.

There are many ways to be involved with Walk MS. You can sign up to be part of the volunteer crew that makes the day run smoothly for the walkers or you can sign up to walk the route. If you don’t have anyone who can come along with you for the day, don’t worry, you’ll have made new friends by the time you head back home.

If you can’t be with us the day of the walk, there is now an opportunity to participate in the Anywhere Walk — a virtual walk to raise funds and be a part of the Walk MS community.

I want to invite you to be a part of this spectacular day. I believe it will make a difference in your life and I know it will make a difference in the lives of people with MS.

I look forward to seeing you on May 2, rain or shine!

NOTE FROM THE BOARD

Karen Larson Board Chair

GET INVOLVEDLearn more about Walk MS: Anywhere Walk on Page 14 or visit walkMSmn.org.

“This annual gathering has become a family event for us, much like birthdays and holidays. It’s a time when we all get together, laugh and make a difference in the lives of others.”


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 MSsociety.org and click on “MS Connection news” on the left-hand side. From there, sort by topic or date.

n New sponsors for Minnesota Chapter events The Minnesota Chapter thanks Christopher & Banks, Walser and C.H. Robinson Worldwide for lending their good names to our events. Because of their continued commitment, two chapter events showcase new names in 2010: Walk MS: Christopher & Banks Walk presented by Walser and Bike MS: C.H. Robinson Worldwide MS 150 Ride.

Visit the MS Connection news page and click on “Corporate Spotlight.”

n Understanding “benign MS” In addition to labels like relapsing-remitting MS, secondary- progressive MS, primary progressive MS, there is something labeled benign MS for people who live with the disease for years without developing any disabilities at all. Learn about current research investigating the mildest form of MS.

Visit the MS Connection news page and click on “Research.”

NEWS BRIEFS

Spring research symposium to be held April 10 in AlexandriaIn 2010, the National Multiple Sclerosis Society, Minnesota Chapter is hosting research symposiums in various regions throughout the chapter area to present the most up-to-date information about MS research and treatments and an overview of clinical trials. The second of four symposiums will be held from 8:30 a.m. to noon Saturday, April 10, in Alexandria, Minn. The free program features Dr. Jonathan Calkwood, director of the Schapiro Center for Multiple Sclerosis at the Minneapolis Clinic of Neurology, and Dr. Adam Carpenter, a neurologist and faculty member at the University of Minnesota MS Center in the Twin Cities.

To register or learn more about this and other 2010 research symposiums, visit the programs page at MSsociety.org.


Rollx Vans donating proceeds to MS SocietyAs part of its commitment to improving people’s lives, Rollx Vans — a manufacturer of mini and full-size accessible wheelchair vans — has partnered with 11 nonprofit organizations, including

the National Multiple Sclerosis Society. With every vehicle purchased, $100 goes to support the nonprofit partner of the customer’s choice.

To learn more, visit rollxvans.com/ourpartners.aspx.

NEWS BRIEFS

Help us reach 2,000 Facebook fans by MS Awareness WeekIn summer 2009, the National MS Society, Minnesota

Chapter launched a Facebook page to keep people affected by MS connected to the chapter and informed about upcoming programs, events and more. Today the chapter boasts a Facebook fan base of nearly 1,300, which continues to grow. The page offers a unique forum for people to connect, network and

discuss everything from symptom management to ways they’re supporting the movement. With more than 175 million members, Facebook.com is the largest social-networking Web site and one of the fastest-growing Internet sites in the world. Help us reach 2,000 Facebook fans. Become a fan of the National MS Society, Minnesota Chapter and suggest us to your friends.

Visit Facebook.com.

The National MS Society, Minnesota Chapter recently launched the mock news program “Research Break” to keep people affected by MS informed about the latest developments in research and emerging therapies. The program, available on the chapter’s YouTube page, offers an easy-to-understand overview of oftentimes complicated scientific studies. “Research Break” was created to help ensure people touched by the disease have opportunities to learn how researchers all around the world, including some right here in Minnesota, are moving closer to a cure for the disease. New episodes appear approximately every month.

To view the last episode, log on to YouTube.com/MinnesotaMS.

Chapter’s new mock news show offers fun look at MS research

The chapter’s new fictional news program offers a simpler way to learn about the latest in MS research.


Champions is a program created to help cyclists in Bike MS: C.H. Robinson Worldwide MS 150 Ride connect with people living with MS to foster education, awareness, gratitude, and most importantly, hope. The program gives cyclists in the two-day, 150-mile ride a chance to ride in honor of someone with MS — making the experience more fulfilling. The pairs can exchange e-mails before the ride and even meet in-person at the event. New this year, cyclists can choose their Champion by viewing individual profiles online. Each profile includes the Champion’s personal story and a special identifier his or her cyclist should wear during

the ride in their honor. Examples of identifiers include ribbons, stickers or a certain color bike shorts. For cyclists who already ride for someone they know, that person can become an official Champion by contacting the chapter.

Champions program gives cyclists meaningful reasons to ride

NEWS BRIEFS

Chapter elects new board membersCook is chairman, president and CEO of Donaldson Company, Inc., a leading worldwide provider of filtration systems and replacement parts. He has participated in Bike MS: C.H. Robinson Worldwide MS 150 Ride as part of Team Donaldson since 2005 — personally raising more than $16,000 to support the society. Hunchis Holden has been involved with the chapter since joining the On the Move Luncheon Committee four years ago. She also serves on the event’s auction sub-committee and chapter programs committee. Hunchis Holden — a retired school teacher — is also featured in the “Why Women?” educational campaign about gender differences in MS.

At the National MS Society, Minnesota Chapter’s annual meeting, held Nov. 21 in Bloomington, Minn., Bill Cook, of Bloomington, Minn., and Katy Hunchis-Holden, of Burnsville, Minn., were elected to the chapter’s board of trustees.

Bill Cook Katy Hunchis Holden

SIGN UPAre you an MS 150 cyclist in search of a Champion? Just visit the MS 150 homepage. If you are interested in becoming a Champion for an MS 150 cyclist, call Megan at 612-335-7955.


NEWS BRIEFS

Two new MS day programs to launch in greater MinnesotaSt. Paul, Minn., is home to one of only four multiple sclerosis day centers in the country — the Fairview MS Achievement Center, which offers nearly 200 people with progressive MS a weekly opportunity to access specialized services including rehabilitation, educational programs, social activities and moral support. Since 2005, the MS Achievement Center’s participation has increased by 42 percent.

In an effort to provide similar opportunities to people living with MS outside the Twin Cities metro area, the Minnesota Chapter is

working to establish new MS day programs in two greater Minnesota communities by the end of 2011. A task force was developed to assess need and transportation options in communities throughout the chapter area. As a result, the chapter is planning to launch one-day-a-week programs in Duluth, Minn., as part of the Duluth Benedictine Day Program, and in St. Cloud, Minn., with the nonprofit day program provider Opportunity Manor, Inc. Stay tuned for more details as these programs continue to develop in the months ahead.

New name and feel for MS CampFor 30 years, MS Camp — a weeklong program held at Camp Courage in Maple Lake, Minn. — has offered people living with multiple sclerosis a chance to take a break, participate in a variety of activities and make new friends. The program also offers a welcome respite opportunity for care partners.

Over the past three decades, the National MS Society, Minnesota Chapter has worked to enhance the MS Camp experience, and this year is no exception. In 2010, the program will provide a new resort-type feel with more flexibility and choices of daily activities. Also new this year, MS Camp even showcases a new name — Majestic Shores Resort. Changes to the MS Camp program were created with the help of focus group participants who helped MS Society staff explore new program formats and unique activities. Stay tuned to hear more about this year’s new activities, recreation and entertainment and more.

This year’s Majestic Shores Resort will be held May 16 to 20 and Aug. 22 to 26. To request an application or share your ideas for reshaping this program, contact Jeannie Zank at 612-335-7939 or [email protected].

Participants of last year’s MS Camp program enjoyed a pontooning activity.


Tax time 2010 by Elinor Nauen

All these deductions kick in only after you’ve paid 7.5 percent of your adjusted gross income for medical expenses. So, for example, if your income was $50,000 a year, and you spent $6,000 on medical expenses, the first $3,750 is your responsibility. You can deduct $2,250 of your $6,000 expense.

Your best bet is to keep really good records, group major expenses into one tax year if you can, and take the advice of a tax professional, including the IRS itself.

“Use common sense. Some potential deductions haven’t been tested in the courts. You’ll have to decide if you want to chance having to fight for them,” Durant said.

Just having multiple sclerosis may feel like more than enough to deal with, but you have to pay taxes like everybody else. There is some good news: You can potentially reduce your tax bite. Learn all you can about the allowances available to people with disabilities.

First off, every penny you spend out of pocket, beyond what’s reimbursed by your insurance, may add up to legal deductions.

“Many things qualify as medical expenses,” said Trudy C. Durant, an accountant in New York and New Jersey: medical equipment; supplies; insurance premiums you pay yourself; transportation and lodging (but not meals) for medically essential trips — for both you and a companion; home attendants; and doctor recommended programs such as weight loss or smoking cessation. A physician’s letter is essential in case you’re audited.

Home improvements that are primarily for medical care are also allowable. This would include air conditioners, a roll-in shower, a stair lift and an elevator. There is a catch. You can deduct what you spend minus the amount that the improvement increases the value of your property.

Let’s say you installed a $40,000 swimming pool. If it raises the value of your house by $10,000, you can deduct $30,000. Costs to remove a barrier, such as widening doorways to accommodate mobility aids, are also deductible. Spending the winter in Florida? Sorry, you’re out of luck.

LIVING WELL WITH MS

fOR MORE INfORMATION

Log on to irs.gov or call 800-829-1040. For those who qualify, the IRS’s Volunteer Income Tax Assistance (VITA) program — with offices in many convenient neighborhood locations — helps prepare basic tax returns. Call 800-829-1040.


New to MS? NARCOMS needs you. By Tuula Tyry, NARCOMS Program Manager

a benefit, you are entitled to a complimentary subscription to the Multiple Sclerosis Quarterly Journal (or MSQR), an informative publication focused solely on the latest in MS research.

NARCOMS participants may also be eligible for clinical trials and other survey studies. All study notifications come directly from us — your contact information will not be shared with anyone — and the decision is always up to you.

*NARCOMS (narcoms.org) The North American Research Committee on MS is a project of the Consortium of Multiple Sclerosis Centers (mscare.org/cmsc), a trusted partner of the National MS Society.

As you know by now, multiple sclerosis is a very perplexing disease. Despite a wealth of research, many aspects of the disease remain poorly understood. The nonprofit NARCOMS Registry* expedites MS research by providing a unique resource for investigators.

The NARCOMS Registry is based on the concept of following disease and treatment patterns in a large group of people over time, similar to the Harvard Nurses’ Health Study, which has been running since 1976. The information gathered for NARCOMS is used in a statistical manner only, so all personal details remain confidential. Just like the Nurses’ Study that unravels links between health and lifestyle choices, NARCOMS is providing similar insights into MS. But to get a complete picture it is crucial that we continue to grow the NARCOMS database by having newly diagnosed people as well as others with MS join the project. Would you consider joining?

WHO’S IN ALREAdy? The registry has almost 35,000 participants from all over the U.S. and Canada and about 50 other countries. The age of participants ranges from 18 to over 100.

WHAT AM I ExPECTEd TO dO?Complete the enrollment survey at narcoms.org or call 800-253-7884 to request a mail-in survey. After that, you get an update survey online or by mail two times a year. Each survey typically takes less than 20 minutes to complete. That’s it. There is no cost to you. As

LIVING WELL WITH MS

HEALTHy LIvING TIP

While no diet can cure or prevent MS, a balanced, low-fat, high fiber diet helps you be in the best possible shape to deal with whatever challenges MS brings your way. Learn more at MSsociety.org. Click on “Living with MS,” then “Healthy living.”

MORE INFORMATION?Contact Desi or Davis at 800-253-7884 or [email protected].


GIVING

In October 2009, the National Multiple Sclerosis Society launched Golden Circle — a new nationwide initiative to recognize donors who support the MS

movement with annual, non-event gifts of $1,000 or more. Leading by example, Golden Circle members make a powerful statement by demonstrating their commitment through their annual leadership giving.

Katy Hunchis Holden, a member of the newly-formed Golden Circle Committee, is excited about this new recognition vehicle for donors. “I see this as another way to connect with people who are compassionate about the effort to stop MS,” Hunchis Holden said. “And it’s a wonderful way to honor those who are major contributors in our vision of a world free of MS.”

A gift to the Minnesota Chapter can be unrestricted or support one or more specific programs. Hunchis Holden — who was diagnosed with MS in 1999 — gives to the MS Society specifically to help fund support programs for people affected by MS and their families.

Golden Circle members receive unique benefits including opportunities to connect

with chapter and national society leadership and other Golden Circle members, invitations to exclusive local and national events, and opportunities to hear the latest in MS research directly from world-renowned scientists during special conference calls.

In addition to the satisfaction of supporting the society’s efforts to help people living with MS, Hunchis Holden is excited about the big picture benefits the new initiative offers donors.

“By being a member of the Golden Circle, your contribution will be recognized and you will be joining a stimulating group of people who are creative, generous and passionate in making their mark against MS,” she said.

For more information about Golden Circle or making a gift, contact Shannon Wolkerstorfer at 612-335-7928 or [email protected], or Rachel Hughes at 612-335-7965 or [email protected].

To learn more about Golden Circle, visit MSsociety.org and click “Donate.”

A golden opportunity

“I see this as another way to connect with people who are compassionate about the effort to stop MS.” – Katy Hunchis Holden

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Telling others how multiple sclerosis affects your life and how you support the MS Society is one of the simplest ways to raise awareness and engage others in the movement to end the disease. By sharing your story, you can give people a personal connection to the cause and help them understand a complicated disease. You may even inspire someone to get involved in a Bike MS or Walk MS event or volunteer for the chapter.

The Minnesota Chapter’s Movement Ambassador program is a unique volunteer opportunity for anyone who wants to do something about MS now, whether you live with the disease or know someone who does.

So what does it really mean to be a Movement Ambassador? Movement Ambassadors do little things to engage others in the movement — from wearing an MS Society event T-shirt to speaking about MS in their community. You may already be doing things in your day-to-day life to help spread the word about MS, but the sky is the limit, so use your creativity. One Movement Ambassador, for example, incorporated her commitment to the MS movement in her Halloween costume.

In addition to regular e-mails with ideas, success stories, contests and more, Movement Ambassadors also receive exclusive Web access to training videos, manuals, personal stories of other ambassadors, opportunities to share your story and other fun online tools.

VOLUNTEERS

Walk MS: Christopher & Banks Walk presented by Walser, May 2Help at one of 18 locations.

Bike MS: Allianz Twin Cities Ride, May 8Maplewood

Majestic Shores Resort, May 15–20 and Aug. 21–26Camp Courage, Maple Lake

Bike MS: C.H. Robinson Worldwide MS 150 Ride, June 11–13Proctor to the Twin Cities with an overnight in Hinckley

Bike MS: Star Tribune TRAM Ride, July 25–30Alexandria, Little Falls, Pequot Lakes, Wadena and Fergus Falls

Youth Camp, Aug. 23–28Camp Friendship, Annandale

VOLUNTEER OPPORTUNITIES

Volunteering in a whole new way“I’m sharing my story, volunteering, being a face of this disease. Because I know by simply sharing my experience with other people, I am raising awareness, bringing hope and getting us closer to a cure.” – Antonio Collodoro, Movement Ambassador

To sign up as a Movement Ambassador, visit MSsociety.org and click on “Volunteer,” or call Jenna at 612-335-7981.


Sylvia Lawry was an unlikely activist. After her brother was diagnosed with multiple sclerosis she learned there were other families touched by MS — like hers — that needed support and resources to help deal with the disease. One year later she founded the National MS Society. Lawry never set out to be an activist, but she certainly became one.

The Minnesota Chapter’s new Unlikely Activist campaign recognizes the unique work of MS activists. Here are just two examples of unlikely activism in our area.

NEvER GIvING IN TO THE STATUS qUOBill MacNally, a person living with MS, volunteer and chapter board of trustees member, was recently asked to join a consumer review panel for

the Congressionally Directed Medical Research Programs. As a participant, he will review proposals for MS research using federal funds. MacNally has been a committed activist for 15 years and is dedicated to improving the

lives of people with MS. “I have a responsibility to take action to make change happen and not accept the status quo as ‘good enough,’” MacNally said.

Increased federal funding for MS research is one of the society’s top legislative priorities. To learn more, visit MSsociety.org. Click on “Government Affairs & Advocacy,” then “Increased MS research.”

ANSWERING A CALL TO ACTION

What does it mean to be an activist?

ADVOCACY

n Looking for a way to get involved in MS Awareness Week? Participate in a mass call-in day March 10. Call your legislators and let them know how they can support people with MS. Visit MSsociety.org for details.

n Make an appointment to visit your legislator and you receive an “I’m an MS Activist” T-shirt! For help setting up your appointment or to share how your visit went, contact Jenna at 612-335-7981 or Scott at 651-283-2172.

Take action

Susan Stellmacher

Bill MacNally

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What does it mean to be an activist continued

Dedication to community service started at an early age for Susan Stellmacher. Her parents were passionate about volunteering and taught her the value of hard work and advocating for herself. Now, Stellmacher is an active volunteer and recently received the chapter’s Activist All-Star Sylvie award for spending endless hours at the state Capitol and engaging her community in the MS movement.

“For me, activism is the perfect union between the genuine caring I feel for others and answering my inner voice’s call to action,” she said.

Visit MSsociety.org and click “Take action” to learn about other activists, share your own story and access downloads and other tools to help you make changes in your community.

ADVOCACY

n Make a splash at the Capitol! Raise awareness about MS issues at 10 a.m. Tuesday, March 23. Participants will be briefed by MS Society staff and then you’ll check out hearings and other Capitol events.

n Stay informed about the latest issues and make your voice heard. Sign up to receive Action Alert e-mails at MSsociety.org. Click on “Take action.”

November 2009 saw passage of health care reform legislation by the House of Representatives, and November and

December saw historic debates in the Senate. The legislative process allows all sides to weigh in as a reconciled bill must go back and be approved by both House and Senate a second time.

For updates on this developing story and resources to help you get involved, visit nationalMSsociety.org/advocacy, and click on

“Update on Health Care Reform Legislation.” From there, click on “Sorting out Myth from Fact” on the left-hand side for a list of major questions and concerns, with answers mainly provided by the National Patient Advocate Foundation.

Other resources include Factcheck.org, a project of the Annenberg Public Policy Center, the Kaiser Family Foundation and the American Medical Association.

The National MS Society works for a balanced, bipartisan and comprehensive solution that supports our Health Care Reform Principles.

Health Care Reform: where legislation stands today


EVENTS

In 2010, the National Multiple Sclerosis Society, Minnesota Chapter is launching Walk MS: Anywhere Walk — another way to join Walk MS: Christopher & Banks Walk presented

Kate Meyer was diagnosed with multiple sclerosis the month she graduated from college — a time when most people are just starting to figure out their direction in life. “I was ready to spread my wings and fly, and I did, just not in the direction I planned,” Meyer said.

Meyer realized she was not alone in her flight, which motivated her to become a part of something bigger. “I wanted to do something that would help me and all the others with MS get back on the flight plan we always dreamed of.”

by Walser on May 2. More than 10,000 people will rally together at 18 sites for this year’s event, but the Anywhere Walk offers a unique virtual option for anyone who is unable to make it in person.

Are you going out of town? Do you have prior commitments? Walk MS is for anyone who is passionate about creating a world free of MS — no matter where you are. Once you sign up for Walk MS: Anywhere Walk, you can begin raising funds with easy online fundraising tools, including a new Facebook application. Plus, Anywhere Walk participants are eligible for all the same great prizes and can even start a team.

Register for Walk MS: Anywhere Walk or a Walk MS event in your community at walkMSmn.org.

That’s why Meyer joined Walk MS: Christopher & Banks Walk presented by Walser. This year, she’s even helping to get others involved as the Walk MS Twin Cities Ambassador. “Walk MS brings people together for one day to fight for a cure,” she said. “The kindness and compassion people show motivates me to continue doing everything I can to help find a cure.”

Join the Walk MS community, wherever you are

Getting back on course

In 2009, the Minnesota Chapter’s Walk MS events raised more than $1.9 million to help end MS.

Kate Meyer, Walk MS Twin Cities Ambassador

ARE yOU SOMEONE WITH MS

IN yOUR 20S OR 30S? Join Meyer and other people with MS in their 20s and 30s at 6 p.m. Wednesday, March 10, at The Happy Gnome in St. Paul, Minn., for a fun social event celebrating MS Awareness Week. For details call Jeff at 612-335-7951.

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Corporate support adds up for greater Minnesota Walk MS events NORTH COUNTRy REGIONAL HOSPITAL

Bemidji, Minn., has hosted a Walk MS event for 11 years and

North Country Regional Hospital has been there from the beginning. According to Barb Stensland, Walk MS Bemidji coordinator, the hospital — which became an official sponsor in 2005 — not only donates $1,000 toward the walk, but helps people living with multiple sclerosis in the community as well.

“The hospital has been such a great supporter, even hosting monthly self-help group meetings for people living with MS and their care partners,” Stensland said.

U.S. BANkAfter his dad was diagnosed with MS, Josh Kiley,

of Marshall, Minn., wanted to support the MS movement in his community. A few years later, he became the volunteer coordinator for Walk MS Marshall and his employer, U.S.

Bank, was right there with him. Today, 18 U.S. Bank employees volunteer on the planning committee, helping to raise funds and organize everything from registration to rest stops. The company also donates $1,250 to support the walk. “Walk MS is one of the top three events we do at U.S. Bank each year,” Kiley said.

BAySHOREStacie Oakland, volunteer coordinator for Walk MS Duluth, also recruited her

employer as a sponsor. Bayshore specializes in physical therapy and rehabilitation services, senior care, young adult care and serves people with memory loss, traumatic brain injuries, or chronic illness who need 24-hour care. For the past three years, the health center has donated $300 to the Duluth walk.

CORPORATE SPOTLIGHT

Eat pizza. Support Walk MS.As of March 1, all Papa John’s locations in the Twin Cities are offering an MS Society pizza special online.

With every order placed online, $1 goes to support Walk MS: Christopher & Banks Walk 2010 presented by Walser. There’s no better reason to eat pizza, so gather your friends and family for a pizza party and dig in.

GET INVOLVEDKnow a company interested in supporting one or more of the Minnesota Chapter’s 18 Walk MS events? Contact Teri Cannon at 612-335-7925 or [email protected].


STUdy SUGGESTS ABNORMAL BLOOd fLOW MAy TRIGGER dAMAGE IN MSRecent reports call attention to the idea that CCSVI, a

reported abnormality in blood drainage from the brain and spinal cord, may contribute to nervous system damage in multiple sclerosis. Dr. Paulo Zamboni from the University of Ferrara in Italy conducted a pilot study, which he states warrants a larger, better controlled study to evaluate the possible impact of CCSVI on MS. Zamboni proposed CCSVI may be corrected through endovascular surgery. The National MS Society has invited investigators to apply for grants to explore this lead.

Visit nationalMSsociety.org and type “CCSVI” into the search bar.

EvIdENCE SUPPORTS AUTOIMMUNE NATURE Of NEUROMyELITIS OPTICATwo studies lend credence to the idea that neuromyelitis optica — a disease closely related to MS — is an autoimmune disease that targets one or more specific proteins in the brain and provide a rationale for new treatment approaches that could also have implications for MS. The studies are published in the November issue of Annals of Neurology.

POSITIvE RESULTS IN PHASE II STUdy Of Iv OCRELIzUMABRoche and Biogen Idec announced that the experimental monoclonal antibody ocrelizumab, given intravenously, significantly reduced disease activity as measured by MRI scans in a phase II study of 220 people with

relapsing-remitting MS. Data analysis is ongoing and the companies expect to provide a full report at an upcoming medical meeting.

SET-BACk fOR ORAL CLAdRIBINEIn late 2009, EMD Serono received a “refuse to file” letter from the U.S. Food and Drug Administration for its application requesting approval of cladribine tablets for the treatment of relapsing MS, which usually means the application has been deemed incomplete. Once the revised application is accepted, a decision could take six to 10 months.

To learn more about this and other experimental oral therapies, visit the MS Connection news section at MSsociety.org. Click on “Research,” then “Oral meds for MS are coming.”

PREGNANCy STUdy SHOWS INCREASE IN C-SECTIONS, LOWER fETAL SIzE AMONG WOMEN WITH MSA new study of pregnancy hospitalizations in a large national sample of women with MS shows the disease is associated with a significant increase in cesarean deliveries and in intrauterine growth restriction (fetal weight below the 10th percentile). However, blood pressure disorders and premature rupture of membranes were not increased. Victoria Kelly, MD, Eliza F. Chakravarty, MD, and colleagues at the Stanford University School of Medicine report what they term “generally reassuring” findings in the December 2009 issue of Neurology.

Read the full report on these and other studies at nationalMSsociety.org/research.

RESEARCH

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Research pipelineDr. Allan Bieber, neuroscientist at Mayo Clinic in Rochester, Minn., works with mice to determine why people with MS have different disease outcomes.

How did you become interested in MS?

Toward the end of my graduate career at Harvard in cell and developmental biology, I became interested in how the nervous system works. I began studying neural development of fruit fly embryos and then developed an interest in working with mice.

Is there any reason for choosing mice? Mice are very interesting. In the 1800s, people bred mice as pets. This resulted in a significant amount of inbreeding which led to the production of different strains of mice that are basically genetic clones of each other. When we induce an MS-like disease in mice, mice of a particular strain get the disease in the same way but mice of different strains can get disease that varies considerably in symptoms and outcome.

What kinds of variation did you see in the disease in the mice?Different strains of mice responded very differently. Some got demyelinating disease but had little repair of the damaged myelin, became paralyzed and died. A second strain developed a similar disease but their damage was repaired and they lived a normal lifespan. We wondered, “What are the genetic differences between these two strains of mice that determine whether or not myelin repair will occur?”

How did you investigate this question? We bred these two strains of mice to see what happened to their offspring. In the first generation offspring, all nervous system damage was efficiently repaired. In the second generation we found a spectrum of disease outcome from mice that repaired myelin damage extremely well, to others with very little repair that eventually became paralyzed and died.

What was your next step? We selected mice from the second generation cross that repaired myelin damage either very well or very poorly and identified genes that might be responsible for the differences in repair and damage that we observed between the two strains. We found two genes that were strong determinants of disease outcome.

Now that you identified the genes, what will you do? This will help us develop drug targets and more effective therapies. For example, targeting the nervous system environment for remyelination, or targeting specific cells that promote repair.

Is anything else on the horizon? Knowing these genetic targets may help create a diagnostic tool for humans. By screening the genome to identify genes that determine a mild or progressive course, doctors could proceed with either a conservative or aggressive treatment based on the patient’s genetic makeup.

What do you do when you’re not in the lab? I grew up in Wisconsin and have always enjoyed outdoor activities during any season, like cross-country skiing, hunting, fishing, camping and canoeing.

Dr. Allan Bieber

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about activists just like you, and learn about our important mass call-in day on March 10.

LEARNSharing your story, staying on top of exciting research developments and learning ways to better manage the disease helps you educate and engage people in the MS movement. Find out how you can share your story on Page 11 and catch up on the latest MS news throughout this issue.

dONATEMaking a gift to the MS Society is simple and powerful. See Page 10 to learn about Golden Circle — an exciting new giving opportunity.

vOLUNTEERThe Minnesota Chapter has opportunities for a wide range of skills and interests. Learn how you can help us move closer to a world free of MS through the Movement Ambassador program and other upcoming volunteer opportunities on Page 11.

MORE WAyS TO MOvE ITn Form a Walk MS or Bike MS team.

n Contact your legislator about an issue important to people with MS.

n Sign up to volunteer at an upcoming chapter event.

n Hang an MS Awareness Week poster in your office or window. Or ask a local business to hang one during the week.

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

n Update your Facebook status with an MS Awareness Week message and become a fan of the National MS Society, Minnesota Chapter!

n Share your story about how you’re “moving it” by sending a letter to the editor of your local newspaper.

FROM PAGE 1

LOG ONAccess fun downloads, useful tools, ideas and other resources to make a splash in your community by visiting the MS Awareness Week toolkit at MSsociety.org. Share your plans and events with us and receive a special orange prize!

Last year, volunteers spread the word during MS Awareness Week by canvassing the skyways in downtown Minneapolis.

TOLL fREE NUMBER 1 800 344 4867 | 19

March 8-14 MS Awareness Week

March 11 Connect Locally — Face time with an MS social worker, Wyoming

March 17 Connect Locally — Hold that Thought: Cognition and MS, Park Rapids

March 19-21 Men’s Getaway, Minneapolis

April 6 Connect Locally — Harnessed Walking and Exercise with MS, Duluth

April 10 Spring MS Research Symposium, Alexandria

May 2 Walk MS: Christopher & Banks Walk presented by Walser, 18 sites

May 8 Bike MS: Allianz Twin Cities Ride

May 16-20 MS Camp, Maple Lake

May 22 Women’s Conference, Bloomington

Telephone consultations *Free and by appointment only

Family attorney consultationsRod Jensen, attorney at lawCall chapter to schedule appointment.

Employment consultationsJennifer Johnson, tips on interviewing, resumes and moreMarch 16, April 20 and May 18

Employment discrimination/private disability consultations

Denise Tataryn, attorney at lawMarch 4, April 1 and May 6

Financial planning consultationsJohn Robinson, C.F.P.®, financial advisorMarch 15, April 19 and May 17

CALENDAR

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

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

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To learn more, visit nationalMSsociety.org/research and type “Ampyra” intro the search bar.

In January, the U.S. Food and Drug Administration approved the marketing of Ampyra™ (formerly known as fampridine SR, from Acorda Therapeutics) for its ability to improve walking speed in people with all types of multiple sclerosis. This marks the first therapy specifically approved to treat a symptom of MS. “This brings a welcome symptomatic therapy that may restore some function and make a real difference in quality of life for a large number of people with different types of MS,” said Dr. John R. Richert, executive vice president for research and clinical programs at the National MS Society.

FDA approves new oral drug to improve walking in MS

RESEARCH

MS Connection spring 2010 issue

Documents

Transcript of MS Connection spring 2010 issue