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Tune in to MS activism Tune in to MS activism and mark MS Awareness Week on your calendar! From March 14 to 20, people affected by multiple sclerosis across the country will work to increase awareness about the disease. Now’s the time to decide what you’ll do for the MS movement this year. The movement is a force by and for people with MS, so we need your help to spread the word. What does MS mean to you and your family? What does MS “equal”? Read the letter from the Minnesota Chapter Board of Trustees Chair on page 3 for some examples. One of the easiest things you can do as an MS activist is to stay on top of the news, and now that the legislative session is in full swing, there’s a lot to keep on your radar. There’re countless sources to keep you updated on what’s going on both locally and nationally. Wondering where to find the latest and most relevant news for

MS activists? Here are five suggestions for tuning in to important information. n Visit to sign up for both the

Minnesota Chapter and National MS Society Action Alert e-mail lists.

n Are you on Twitter? Follow @MSactivismMN

for news you can use.

n Read the MS activist blog for news on federal-

level MS issues at

continued on page 7

Join us for MS Rally at the Capitol March 15! See page 7 for all the details.


News Page 4

Giving Page 6

Events Page 9

Living Well with MS Page 12

612-335-7900 / 800-582-5296

Can you help us?

Publication of the National Multiple Sclerosis Society

If you’re able to make an in-kind donation to the Minnesota Chapter, contact Teri at 612-335-7925 or To see the full in-kind list, visit and click “Donate.”

Minnesota Chapter

Board Chair • Michael V. Schrock Chapter President • Holly Anderson Newsletter Editor • Anna Kucera E-mail • The National Multiple Sclerosis Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The National Multiple Sclerosis Society assumes no liability for the use of contents of any product or service mentioned. Information provided by the Society is based upon professional advice, published experience and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. The National Multiple Sclerosis Society recommends all questions and information be discussed with a personal physician. The National Multiple Sclerosis Society mobilizes people and resources to drive research for a cure and to address the challenges of everyone affected by MS. © 2011 National Multiple Sclerosis Society, Minnesota Chapter




Office/warehouse supplies

n Nursing 2011

n Power pallet jack

Emergency care package items for a person with MS

n Sound system

with speakers and wireless microphone

n CD player

drug handbook

n Houseold cleaning


n MP-3 player

n Laundry detergent

n Electronic readers

n Toilet paper and

n Flip video camcorder

n Metro Mobility

(Kindle, Nook)

n Paper bags

(gift, goodie bags)

n Tissue paper n Cards (get well,


n Jump drives

(portable storage device)

paper towels tickets

n Gas cards n Gift cards for food

and daily living items (Cub, Target)

n Phone cards n Jimmy John’s

gift cards

n 18-gallon

storage bins

Studies show that early and ongoing treatment with an FDA-approved therapy can reduce future disease activity and improve quality of life for many people with multiple sclerosis. The National MS Society’s medical advisors recommend that people with MS talk with their health care professionals about using these medications and about effective strategies and treatments to manage symptoms. If you or someone you know has MS, please visit or call 800-582-5296 to learn more.


What does MS “equal”? Snow continues to pile up across the Minnesota Chapter, but spring and MS Awareness Week are just around the corner. During MS Awareness Week March 14 to 20, hundreds of thousands of people across the country will work to increase awareness about multiple sclerosis and the people it affects.

Mike Schrock Board Chair

Please mark your calendars and start thinking about what you’ll do for the MS movement. The power and importance of the movement is that it’s a force by and for people with MS, so the more people involved, the better. We need your help to spread the word about what it means to live with this disease. A good first step is to pinpoint what MS means to you and your family. What does MS “equal”? Some people have shared that “MS=change,” a change in the way they live their lives and see the world. For others, “MS=invisible” because friends and coworkers don’t see the hidden symptoms of their MS. And, of course, “MS=uncertainty” because of the unpredictable nature of the disease and the uncertain future it can represent. Everyone agrees that MS “equals” a challenge. We need to turn up the volume of what MS means if our movement is to continue to gain momentum. What else does MS mean to you? How are you moving your life forward? Have you shared your story? The goal is MS awareness not just March 14-20, but year round. The movement to end MS matters. Your contributions to the movement matter. Thank you for helping us create a world free of MS.


Mike Schrock

TOLL-FREE NUMBER 800 344 4867

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What’s on MS Connection Online right now? When you see this

icon, it means there’s expanded coverage online. Follow the instructions at the end of the article to find the extra information, or just browse the news section of our website. Visit and click “MS Connection News” on the left-hand side. From there, sort by topic or date.

n Society convenes think tank on progressive MS

A think tank was recently convened by the National MS Society and its commercial drug development entity, Fast Forward. It brought together MS investigators, research funding agencies and industry representatives to map out next steps to move the field toward better understanding of factors underlying MS progression and to increase the number and quality of clinical trials in progressive MS. Visit to watch the presentation video and discover key takeaways from the event.

Majestic Shores Resort: A summer vacation on the lake Majestic Shores Resort is a five-day vacation for adults with multiple sclerosis held at Camp Courage on the shores of beautiful Cedar Lake near Maple Lake, Minn. Two sessions will be offered in 2011: May 15 to 19 and Aug. 21 to 25.

area. It’s fully accessible and each cabin features a comfortable lounge and sleeping area. Trained volunteers assist guests with care needs and recreational activities, and home health aides are available in the morning and evening to provide personal care in the cabins. Guests are also invited to bring their own personal care attendants. Nurses are available to provide onsite medical care and a doctor will be on call.

Meet new friends and reconnect with old ones while enjoying outdoor leisure activities like canoeing, fishing or music by the lake, as well as indoor activities like crafts, educational workshops and more. You can also just spend time relaxing and socializing. It’s your vacation — spend it how you want to!

The fee to attend is $200 per person and scholarships are available. Guest applications were mailed in early January to previous guests and people who expressed interest in Majestic Shores Resort. If you would like an application form or more information, contact Jeannie at 612-335-7939 or or apply online at Applications must be received by March 12.

The facility is complete with an indoor pool, farm, health center, gymnasium and recreation 4




Join the fun at MS Youth Camp! If you are entering fourth grade through 12th grade, and you live with a relative who has multiple sclerosis, this is the summer camp for you! MS Youth Camp brings together young people from across the Midwest for a week of summertime fun, memory-making and personal growth. MS Youth Camp provides opportunities to: n Build connections with other kids and teens

who understand what it’s like to live with someone who has MS; n Enjoy exciting activities like swimming, high ropes, arts and crafts, disc golf, horseback riding, drumming and canoeing; n Learn about MS and talk with others your age about how MS impacts your family; and n Relax and have a good time! MS Youth Camp 2011 is a collaboration between the Minnesota and Greater Illinois chapters and will take place at YMCA Camp Icaghowan.

Located about 70 miles northwest of the Twin Cities near Amery, Wis., the camp spans an entire island on the edge of beautiful Lake Wapogasset. Amenities include miles of hiking and horseback riding paths, a great waterfront with aquatrampoline and a brand new nature center. To learn more about MS Youth Camp, contact Bethany at 612-335-7954 or or apply online at Check out photos of last year’s MS Youth Camp at

Spring Research Symposium to be held in Mankato April 9 Have your questions about multiple sclerosis research, therapies and clinical trials answered by Dr. Lisa Davidson April 9, in Mankato (150 Stadium Court). Dr. Davidson is head of the MS team at the Mankato Clinic and serves on the chapter’s clinical advisory committee. Plus, visit exhibitor tables to learn more about drug therapy options available to many people with MS; community agencies and clinics; MS groups and clubs; and meet MS medical and rehabilitation professionals from the Mankato Clinic and Immanuel St. Joseph’s Mayo Health System.

Lunch will be provided to those who attend the research presentation. If you are unable to attend the research presentation, you are still welcome to visit the exhibits. 11–noon Check-in and exhibits Noon–12:45 p.m. Lunch 12:45–1 p.m. Q&A session 1–2 p.m. Exhibits Visit or call 612-335-7900 to register. Registrations must be received by April 4. TOLL-FREE NUMBER 800 344 4867

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Why make a planned gift? “I think back to the drugs my dad was taking 10 years ago and how far we’ve come.”

Cortney Dahl, a National MS Society, Minnesota Chapter staff member, loves to spend time with her family. Her family is incredibly important to her. When she was young, her father, Mike, was diagnosed with MS, which jumpstarted her passion for raising dollars and awareness for the disease. Dahl was first an intern at the chapter office and now works with special events. She shows her dedication to the Society in many ways. She’s a Challenge Walk MS: Twin Cities team captain for team “Ladies and the Tramp,” and she’s a new member of Lawry Circle — a planned giving club. When asked what inspired her to make a planned gift to the National MS Society, Dahl said, “Working for the Minnesota Chapter, I see first

– Cortney Dahl

hand how donations impact people living with MS and their families. Knowing I can give a gift that will make a difference after I’m gone is something I’m proud of!” As for the research the Society funds, Dahl said, “This organization is moving us closer to a world free of MS. I think back to the drugs my dad was taking 10 years ago and how far we’ve come — it’s all possible thanks to the National MS Society and everyone who supports this organization.” Dahl also said it’s important people know the organization doesn’t just fund research. It helps people cope with and manage MS by providing practical assistance and programs. If you would like more information about joining Dahl and becoming a member of Lawry Circle, contact Chris at 612-335-7965 or

Golden Circle members want to end MS forever Golden Circle is a place for people with an extraordinary commitment to end multiple sclerosis forever and includes donors who personally contribute annual, non-event gifts of $1,000 or more.

have joined the movement. Golden Circle members have the chance to attend Society salon events, often held in conjunction with Minnesota Chapter research symposiums. This spring, Golden Circle members had lunch with Dr. Moses Rodriguez from Mayo Clinic, a leading MS researcher.

Last year was the first of the Golden Circle program, and already, more than 100 people

Contact Chris at 612-335-7965 or for more information.




from page 1

n Wondering what’s going on at the State

Capitol? Register for updates from the House and Senate. Plus, check out streaming video to watch your legislators in action at

Have you committed to attend the MS Rally at the Capitol yet? Join us for the ultimate MS Awareness Week celebration at the State Capitol March 15, at 11 a.m. You’ll hear from legislators, people with MS and Minnesota Chapter staff about the important work being done to make change for people living with MS. Attendees will get an orange MS Awareness Week gift, tools they can use to raise awareness, fun photo opportunities and the chance to network with others affected by MS.

n Get a daily dose of policy news in your inbox.

Subscribe to the public policy staff’s favorite daily e-mails.


Politics in Minnesota: The Morning Report gives you the day’s top political stories in Minnesota at


Kaiser Health News: Stay updated on national health policy news with The Daily Report at


Morning Take: Get an insider’s guide to Minnesota politics at

It’s rally time!

Have questions or want to RSVP? Contact Jenna at 612-335-7981 or

First steps to smart money management Financial planning is crucial for people with multiple sclerosis and their families: As the disease progresses, expenses tend to grow, which may bring difficult financial choices. Early planning can help.

Get started: Call us Begin by calling 800-344-4867 to connect with an MS Navigator™. This highly trained professional can refer you to service providers who can help you address issues like health insurance, employment and taxes.

Next: Read up One key resource the Navigator will recommend is a brochure called “Adapting: Financial Planning for a Life with Multiple

Sclerosis.” Full of worksheets, tips and references, the 72-page publication is an overview of your financial options. You can ask for a free copy or you can download it at

Free tax preparation assistance The Internal Revenue Service (IRS) will help you prepare your tax return. The online interactive tax assistant answers questions about deductions, eligibility for credit and more. For those who qualify, the IRS has a Volunteer Income Tax Assistance program that offers free tax help by certified volunteers. For more information, visit or call 800-829-1040.

TOLL-FREE NUMBER 800 344 4867

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Celebrate National Volunteer Week Upcoming volunteer opportunities MS Awareness Week — March 14-20 Help spread multiple sclerosis awareness and the National MS Society in your community.

National Volunteer Week is just around the corner April 10-16. We recognize all the people who have given generously of themselves, asking for nothing in return. They’re ordinary people, accomplishing extraordinary things every day. National MS Society, Minnesota Chapter volunteers are especially amazing. Each of you is a key partner in the movement to end MS for good. Whether you answered the phone, stuffed envelopes, played the accordion for Majestic Shores Resort guests, served lunch to Challenge Walk MS: Twin Cities participants or led an MS club or group, thank you. Our organization couldn’t offer all the programs and services it does to people with MS and their families without your help.

Walk MS: Christopher & Banks Walk presented by Walser — May 1 Assist with the one-day walk in your area. Walk MS is held at 18 sites throughout Minnesota and western Wisconsin: Twin Cities, Alexandria, Bemidji, Brainerd, Cambridge, Chisholm, Duluth, Faribault, Fairmont, Fergus Falls, Hastings, Mankato, Marshall, Park Rapids, Rochester, St. Cloud, Willmar and Hudson, Wis. Bike MS: Allianz Twin Cities Ride — May 7 Help out with our one-day bike ride that begins and ends at Aldrich Arena in Maplewood. Riders choose a 30- or 60-mile route, mostly on the Gateway Trail. Majestic Shores Resort — May 14-19 This weeklong program for people living with MS offers a wide range of volunteer opportunities at Camp Courage in Maple Lake. Bike MS: C.H. Robinson Worldwide MS 150 Ride — June 10-12 The MS 150 is a two-day, 150-mile bike ride from Duluth to the Twin Cities with an overnight in Hinckley. We need more than 1,000 volunteers to pull it off! MS Youth Camp — June 19-25 Camp counselors and other volunteers are needed for this weeklong camp for kids who have a parent or who live in a household with a person with MS. MS Youth Camp will take place at Camp Icaghowan in Amery, Wis.





Lace up your sneakers for MS May 1 and follow Walk MS on Twitter (see sidebar) for updates, contests and prizes, fundraising ideas and much more. Join the Movement®, and walk with us toward a world free of MS!

Get the latest Minnesota Chapter special events news on our brand new social media pages: Join us for Walk MS: Christopher & Banks Walk 2011 presented by Walser, a day for communities across Minnesota and western Wisconsin to come together and celebrate the movement to end multiple sclerosis. To be held in 18 locations Sunday, May 1, Walk MS is an opportunity to share a great experience with friends, family or co-workers. Have more fun and raise more dollars for the MS movement by starting or joining a team. And keep in mind — every Walk MS location has at least one accessible route — so anyone can walk on wheels. Donations raised directly help people affected by MS through support programs and services and cutting-edge research. The Minnesota Chapter serves more than 10,000 people living with MS, and Walk MS makes a difference to each one. Visit to register today. Once you sign up, “like” the Walk MS Facebook page

And you can always find us at:

TOLL-FREE NUMBER 800 344 4867

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The world of MS research of disability progression by 29.8 percent. It also reduced the risk of new MS lesions and disease activity. Additional clinical trials are under way.

Last October, more than 5,500 neurologists and other investigators from around the world covered almost every aspect of current multiple sclerosis research in some 900 scientific presentations and posters at the annual European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) conference in Gothenberg, Sweden.

Research highlights A newly completed two-year, phase III trial of teriflunomide, an oral compound that inhibits specific immune cells, in 1,088 people with relapsing forms of MS, found positive results. Paul O’Connor, M.D., of the University of Toronto, reported two different doses of teriflunomide significantly reduced the rate of MS relapses by up to 31.5 percent compared to placebo, and the higher dose reduced the risk




Other medications also show promise at various trial stages. An oral compound called firategrast caused a significant decrease in the rate of new MRI-detected lesions in a six-month trial in relapsing-remitting MS. Ocrelizumab, which targets and kills immune B cells, reduced new lesions by at least 89 percent over placebo in a 24-week trial. In a separate session, Antonio Uccelli, M.D., of the University of Genoa, described attempts to stop MS progression using infusions of an individual’s own bone marrow or blood stem cells (mesenchymal cells). Dr. Uccelli is now collaborating on a study that he hopes will show these cells are beneficial.

Restoring function Several research teams reported progress in improving quality of life and specific symptoms, including fatigue and mobility issues, through group physical therapy and supervised aerobics, yoga and resistance training classes. Another study suggested that memory training can improve brain function. Many reports focused on CCSVI (chronic cerebrospinal venous insufficiency), with mixed or conflicting results. Lab studies identified additional molecules that may block the ability of myelin-making cells to repair damage caused by MS; selectively turning them off could be useful for encouraging myelin repair in people with MS.


Risk factors Trond Riise, M.D., of the University of Bergen, reviewed the growing list of factors that may contribute to an individual’s susceptibility to developing MS, and pointed to current studies

that may lead to a better understanding of the interactions and variations of these multiple risk factors. For a more complete report on the conference, search “ECTRIMS” at

Research identifies key player in nervous system repair Researchers co-funded by the National Multiple Sclerosis Society have identified a molecule that appears to stimulate the brain’s natural ability to repair myelin in rodents. Myelin is the insulating coating on nerve fibers that’s damaged in MS. The finding resulted from a massive hi-tech screening system to identify new strategies to repair nervous system damage in MS. If further research determines the findings translate to humans, there may be a target for more effectively repairing the nervous system after MS attacks. To learn more, visit

Small study suggests skin patch can suppress immune activity A small study in people with relapsing-remitting multiple sclerosis showed applying a skin patch containing components of myelin, the material that surrounds nerve fibers and the target of immune attacks in MS, succeeded in suppressing immune activity. The results suggest that treatment activated dendritic cells in the skin and lymph nodes. Dendritic cells are powerful stimulators of T cells, the major players in MS immune attack; dendritic cells can determine whether T cells

are activated to attack or are suppressed. In this study, T cells that react to myelin were shown to be reduced, and T cells known to help regulate immune responses were shown to increase. Further studies will be needed to establish whether this approach is safe and effective for treating MS. To learn more, visit

TOLL-FREE NUMBER 800 344 4867

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Exercise for people with MS in your community Make participating in an exercise program your New Year’s resolution. Exercise helps manage many symptoms of multiple sclerosis, in addition to improving overall health and well-being. The Minnesota Chapter works with community wellness facilities to offer exercise programs designed for people living with MS across the state. Visit to see if there’s a program near you. Look for a flier in the mail as well. Do you want to exercise in your community, but no one’s offering an exercise program for

people who have MS? Contact Jeannie at 612-335-7939 or

Weightlifting and MS, By Ron Hagelganz My wife, Lisa, likes to lift heavy objects. Not everyone’s cup of tea, but powerlifting is what she loves to do. In fact, in 2001, she set a world record in the World Association of Benchers and Deadlifters (WABDL), in both bench press — with 176.2 pounds — and deadlift — with 319.5 pounds — where she squatted to lift the weighted bar off the floor, held it and put it down again with good control.

Next, I found a nice used bench with weights and brought it home so Lisa could start training again. Because of the MS, deadlifting is out, but bench press is fine, as long as she’s having a good day. She was excited she could do it, even with her restricted walking, and very happy to be doing something she could be good at again.

Then came a car accident, brain surgery, and in 2006, a diagnosis of MS.

Then Lisa found that the WABDL has a division for people with disabilities. That meant she could actually compete! So in March 2010, at age 55 — nine years to the month after her last competition — my nervous, prayerful and very thankful wife competed in the WABDL Goodson Honda National Championships in Portland, Ore.

She now uses a walker to get around, but Lisa never gave up her dream of lifting again. Last year, she asked her neurologist if lifting could do her any harm. He gave her the go-ahead, and we got a day pass to the local YMCA. I got her on a bench, loaded up some plates, and she did it!

Lisa set a new state record in bench press with her very first lift and continued to reset the record in her next three lifts, finishing with 132.2 pounds. The next-best state record in her division is 82.5 pounds, so she did really well. And you know, I think she’s just getting started!





It wouldn’t surprise me to one day see her beat her pre-MS record. I know she’s prouder of just being able to lift than of any of her old records. Not bad for an ol’ gal with MS, huh?

There are many sports and competitions that have been adapted for people with disabilities. Visit and type “adapted sports” in the search box.

Lisa and Ron Hagelganz live in Vancouver, Wash.

Learn about MS — anytime For 10 years, MS Learn Online has provided educational webcasts, featuring health professionals from all over North America, accessible any time, day or night at A recent feature presentation is “Getting a Good Night’s Sleep with MS,” in which Rock Heyman, M.D., chief of the division of neuroimmunology and director of the MS Center at the University of Pittsburgh, explains why people with multiple sclerosis seem to be more prone to sleep disorders. He has some tips for dealing with the problem. Another new presentation is about Gilenya, the first FDA-approved, oral, disease-modifying therapy for people living with MS. Aaron Miller, M.D., professor of neurology at Mount Sinai and medical director at the Corinne Goldsmith Dickinson Center for Multiple Sclerosis in New York City, N.Y., discusses Gilenya in two sessions, covering how it works, who might benefit, pros, cons and potential side effects. There are more than 50 other MS Learn Online videos available. Transcripts (.pdf format) and podcasts (.mp3 audio format) are available for most programs. Correspondents who interview the MS experts not only have a professional background in broadcasting, they have MS themselves. “So

what they want to know is often what other people with MS want to know,” said Julie Gibson, special projects consultant for the Society. Sign up at to receive an e-mail whenever a new webcast debuts. Explore MS Learn Online videos, including:

Basic Facts of MS, Treatments, Symptom Management, Healthy Living, Progressive MS, Research, Family Life and Relationships, Employment and Insurance and En Español. On the first and third Thursdays of each month, two new videos are added. An update on disease-modifying therapy is generally added once a year.

In a hurry? Visit “Daily Minutes.” In 60 seconds, you’ll get basics on Who Gets MS, What is Myelin, What is Relapsing-Remitting MS and more. Click the “Daily Minute” link in the blue box at

TOLL-FREE NUMBER 800 344 4867

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An MS Annual Convention to remember The MS Annual Convention, Jan. 21-23, was a fantastic weekend to connect with others, share stories and learn how we are moving together toward a world free of multiple sclerosis. The weekend activities were made possible thanks to many generous sponsors, including pharmaceutical partners Bayer HealthCare Pharmaceuticals, Biogen Idec, Elan, EMD Serono, Pfizer, Teva Neuroscience, Acorda Therapeutics, Questcor Pharmaceuticals, Novartis Pharmaceuticals, Bioness, Avanir and Medtronic.

Welcome, Target Many companies partner with the National MS Society after their employees join the movement as event participants. Following this pattern, Team Target joined Bike MS in 2010, and is now the newest sponsor of Bike MS: C.H. Robinson Worldwide MS 150 Ride 2011. Target will

provide volunteers and festivities at a rest stop and at the finish line in June. It’s not too late to engage your company as an official 2011 event sponsor. Visit for a full list of events, and contact Teri at 612-335-7925 or to find out more.

Thank you, Water Park of America Thank you to Water Park of America for stepping up to support the 2011 Minnesota Chapter youth and




teen programs. Don’t miss the private party for Minnesota Chapter supporters Sunday, April 10. Water Park of America will donate 100 percent of ticket sales to the National MS Society! Tickets are available online. Visit to sign up today!


March 14-20 MS Awareness Week March 15

MS Rally at the Capitol, St. Paul

April 9

Spring Research Symposium and expo, Mankato

April 10

Waterpark of America fundraising party

May 1

Walk MS: Christopher & Banks Walk presented by Walser

May 7

Bike MS: Allianz Twin Cities Ride

June 10-12

Bike MS: C.H. Robinson Worldwide MS 150 Ride

Check out a list of upcoming community fundraisers at

For information or to register

Telephone consultations *Free and by appointment only.

Programs Contact registration line: 612-335-7900 800-582-5296

Family attorney consultations Rod Jensen, attorney at law Call chapter to schedule appointment.

Telephone consultations Contact Sarah, Jill or Heather: 612-335-7900

Employment consultations Jennifer Johnson, tips on interviewing, resumes and more Call chapter to schedule appointment.

Fundraising events Contact Cortney: 612-335-7971

Employment discrimination/private disability consultations Denise Tataryn, attorney at law March 3, April 7, May 5 and June 2 Financial planning consultations John Robinson, C.F.P.速, financial advisor March 14, April 11, May 9 and June 13 Newly diagnosed consultations Call 612-335-7938 to schedule a face-to-face or phone consultation with a Minnesota Chapter social worker. Some evening and Saturday times are available. TOLL-FREE NUMBER 800 344 4867

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Nonprofit US Postage


Minneapolis, MN Permit No. 1759

200 12th Ave. S. Minneapolis, MN 55415-1255


to create a world free of MS

May 1, 2011 register today!

MNM MSCxN spring2011  
MNM MSCxN spring2011  

Spring 2011 MSCxN