MSConnection, spring 2013 by National MS Society, Upper Midwest Chapter

SPRING 2013 UPPER MIDWEST CHAPTER

MS Connection Newsletter

2013 marks the 25th year for walk MS

INSIDE 04 THIS ISSUE

MS Awareness Week

Walk MS turns 25

Working and SSDI

Partnering on Progressive MS

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

MS connection: spring 2013

Can you help us? If you’re able to make an in-kind donation to the Upper Midwest Chapter, contact Lindsay at 612-335-7976, 800-582-5296 (option 2) or lindsay.anderson@nmss.org. To see the full in-kind list, visit MSsociety.org and click “Donate.” n

Painting supplies (paint brushes, rollers, painters tape, disposable paint trays)

Concert and event tickets

Jump drives (portable storage devices)

Home Depot gift cards

Electronic readers (Kindle, Nook)

Lanyards and clear name badges

Gift basket items for silent auctions

Dry-erase board

Power pallet jack

Bike rack

Digital photo printer

Gift cards (restaurants, convenience stores, etc.)

National Multiple Sclerosis Society Upper Midwest Chapter 200 12th Ave. S. Minneapolis, MN 55415 800-582-5296 Board chair: Carol Houghtby Chapter president: Holly Anderson Editor: Maggie Flanagan Design: Sue Schweitzer © 2012 National Multiple Sclerosis Society, Upper Midwest Chapter

Information provided by the National MS 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 Society recommends all questions and information be discussed with a personal physician. The Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The Society assumes no liability for the use or contents or any product or service mentioned.

mssociety.org | 800-582-5296

Letter from Board Chair

raise MS awareness this March and year-round Connect with us online If you wish to receive MSConnection via email, please let us know at editor@MSsociety.org. Upper Midwest Chapter MSsociety.org editor@MSsociety.org Like us: facebook.com/ UpperMidwestMS Follow us: twitter.com/ UpperMidwestMS Watch us: tinyurl.com/ UpperMidwestVideos

MS Awareness Week is March 11–17, and this year we’re focusing on building the very thing MS seeks to destroy: connections. When you talk about how MS has affected you or a loved one, boast about the money you raised for a special event, or discuss legislative issues that impact people with disabilities, you’re raising awareness and creating connections — connections that are critical to ending this disease once and for all. This March, join the millions of others who want to do something about MS now by simply talking. It’s easy. I challenge you to recruit someone new to Walk MS, suggest the Upper Midwest Chapter Facebook page to 10 people, ask a friend to volunteer with you or send a letter to your legislator about how MS affects your family. Small victories can be won in sharing stories, and by connecting through small victories, we could win some really big ones. But raising awareness isn’t just a weeklong event. It’s imperative we keep the momentum going throughout the year, so I ask that you seize every opportunity you have to talk about your role in the movement to end MS. Whether you’re in line at the grocery store, at the dinner table with friends or rallying with thousands of others at Walk MS, it is these moments when our connections become more powerful than the connections MS destroys. Thank you for all you’ve done, whether your contribution is time, skills, funds or ideas. It makes all the difference. n

04 NEWS

What you can do this MS Awareness Week March 11–17 is MS Awareness Week. Raising awareness about multiple sclerosis is a big job, yet it doesn’t take a lot of work. When you send an email to your friend or coworker inviting them to join you at Walk MS or wear a National MS Society T-shirt while running errands, you’re creating connections. And though these actions seem small or insignificant, they start a long string of connections that truly strengthen the MS movement. MS awareness can happen in many different ways, and doesn’t just happen with billboards and advertisements. It happens when you share your story and help bring an understanding to this disease that is so often misunderstood. As part of a network of people who are passionate about ending MS, you have a responsibility to raise your voice and to introduce new people to our vision of a world without it. During MS Awareness Week, you can take simple actions to make a big impact. So, what can you do?

MS connection: spring 2013

What’s the one thing you wish people knew about MS? Share it with at least five people.

Visit MSsociety.org and check out the MS Awareness Week page. You’ll find ideas and tools you can use to raise awareness.

Showcase your awesome awareness activities by posting them on the chapter’s Facebook page.

Wear your MS apparel while you’re out during the week.

As part of a network of people who are passionate about ending multiple sclerosis, you have a responsibility to raise your voice and to introduce new people to our vision of a world without it. If everyone who receives this MS Connection newsletter shared their story with one person, we’d have 20,000 more people in our chapter area who know a little bit more about MS! We’re counting on you to make a connection during MS Awareness Week, and we look forward to hearing your success stories! For more information about MS Awareness Week or to share your ideas, contact Jenna at 612-335-7981 or jenna.washnieski@nmss.org n

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NEWS

Walk MS turns 25 04.27.13

05.18.13

North Dakota

05.04.13 05.05.13 South Dakota + Sioux City, IA

Iowa

Minnesota + Hudson, WI

This year, Walk MS turns 25, and looking back, the progress made in both research and services that improve the quality of life for people with MS is nothing short of incredible. If you’ve walked just once or every year since it began, thank you for being part of our vision of a world free of MS. Walk MS was first hosted by the Minnesota Chapter, now the Upper Midwest Chapter, in 1988. At that time, not one MS drug treatment was available to help slow the progression of the disease. Now, there are nine. The Society’s $760 million investment into research has fueled many advances, and the hope for new, more effective treatments and a cure for MS has never been greater. We’re part of a global movement of millions of people working toward a world

free of MS. We move closer every day, but still, people affected by MS face challenging issues. That’s why events like Walk MS are so critical. Walk MS is an experience unlike any other — a day to come together, to celebrate the progress we’ve made and to show the power of our connections. Your participation in Walk MS is a demonstration of your commitment to a future where no one has to hear “you have MS,” again. Join us this spring, and invite friends, family and neighbors to one of 33 walks in the Upper Midwest Chapter area. Can’t make it? Register as a “virtual walker” and help end MS forever, no matter where you are. For more information or to register for a Walk MS event near you, visit myMSwalk.org or call 800-582-5296 (option 2). n

Team of the Future Team of the Future is a chapterwide, super team made up of Walk MS teams led by young adults ages 13 to 18. To join, simply register as a Team of the Future captain, recruit teammates and fundraise together. It’s easy, fun and makes a big impact. Teams of the Future can participate at any walk throughout our chapter area! To learn more, visit MSsociety.org and search “Team of the Future.”

MS connection: spring 2013

Volunteer

Upcoming opportunities To sign up for any of the events listed below, or for more information about volunteering for the National MS Society, please call 800-582-5296 or visit the volunteer Web page at MSsociety.org. Walk MS —April 27, May 4, May 5, May 18 Assist with the one-day walk in your area. Visit myMSwalk.org to find a walk near you. Bike MS: SAM’S CLUB Twin Cities Ride — May 11 Help us out with our one-day bike ride that begins and ends in White Bear Lake, Minn.

Volunteer spotlight MEET CHRISTINA RAVILLE A senior in high school, Christina Raville of Marion, S.D., visits the Sioux Falls chapter office every other week and helps out with administrative tasks.

Majestic Shores Resort — May 11–16 Volunteer opportunities are plentiful during this five-day camp for adults living with MS. Bike MS: C.H. Robinson Worldwide MS 150 Ride — June 7–9 The MS 150 Ride is a two-day, 150-mile bike event from Duluth, Minn., to the Twin Cities. More than 1,000 volunteers are needed each year! MS Youth Camp — June 16–22 Camp counselors and other volunteers are needed for this weeklong camp for kids affected by MS in Amery, Wis. Bike MS: Cruise the Cornfields — June 22–23 Give us a hand in the Ames, Iowa, area for this two-day ride. n

This past year, Christina also participated in Bike MS: Sanford Health Pedal the Plains with her family. Christina and her family rode for her mom, who was diagnosed with MS in 2000 at age 33. “I came to the Society with a more than average understanding of MS, and it’s a scary thing. I’ve seen firsthand what it can do to a person ... I wanted to do this not only for my mom but as a way to fight for a cause so huge and amazing.” Thank you, Christina, for all you do! n

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EVENTS

Don’t just ride, Bike MS Love to bike? Hit the road with us! Bike MS is more than just a ride. It’s a group effort that transcends personal accomplishment and touches the lives of more than 17,000 people living with multiple sclerosis in the Upper Midwest Chapter area.

Bike MS 2013 series Bike MS: SAM’S CLUB Twin Cities Ride May 11 22- or 52-mile route options White Bear Lake, Minnesota

Bike MS: C.H. Robinson MS 150 Ride June 7–9 150 miles Duluth to the Twin Cities, Minnesota

Bike MS: Cruise the Cornfields June 22–23 35- or 75-mile route options Urbandale to Ames and back, Iowa

Join us for one or more of the six Upper Midwest bike tours, designed for riders of all levels. Each event offers stocked rest stops, bicycle mechanics, rider assistance along the route, a T-shirt and a finish line meal. All riders must be at least 12 years old.

Bike MS: TRAM Ride

Want to help but don’t want to pedal? The success of Bike MS is directly related to our invaluable volunteers. Visit the volunteer Web page at myMSbike.org to learn more.

July 27 45-, 75- or 100-mile route options Fargo, North Dakota

For more information about Bike MS or to register, call 800-582-5296 (option 2) or visit myMSbike.org. n

July 14–19 300 miles North Shore and Iron Range, Minnesota

Bike MS: Sanford Health Ride the Wind

Bike MS: Sanford Health Pedal the Plains Aug. 3–4 50-, 75- or 100-mile route options Madison to Sioux Falls and back, South Dakota

08 LIVING WELL WITH MS

An MS silver lining, painted

MS connection: spring 2013

of his diagnosis, he was using a wheel chair. Yet he’s owned both a restaurant and photography studio. He still cooks for his family and takes “rolls” in his neighborhood. He is a father of two and grandfather of four. On Sundays, he teaches at his church. “My doctor told me I bite off a little too much, but I just keep doing what I’m doing to stay happy,” said Tom. But it wasn’t until age 48 that Tom discovered his new career in painting. Deb McRaith, T.R. and Val Carter, A.O.T., Fairview MS Achievement Center staff members, encouraged Tom to start painting 10 years ago, and when he completed a painting of a church in Greece, he was surprised at the positive feedback.

His vivid water color and acrylic paintings range from landscapes of the Greek Isles to religious art, to figure paintings, to still life. You would never guess it by looking at his work, but Tom Checheris of Edina, Minn., paints with only the use of his right hand, and picked up his first paint brush in his late forties. He was diagnosed with primary-progressive multiple sclerosis more than 20 years ago. “I never think of myself as disabled. As a matter of fact, MS is the best thing that’s ever happened to me,” said Tom. “If I hadn’t gotten MS, I would have never picked up a paintbrush.” Tom, who lives with his wife, Vickie, of 38 years, was diagnosed with MS at age 34 while studying to become a priest. Within four years

“My daughter, who was a St. Olaf art student, came the day I finished it and said my interpretation of the photo was good. Then I looked at it all differently, and I haven’t stopped painting since,” said Tom. Tom, a recipient of an Encouragement Award for Artists with Disabilities from Sister Kenny Institute, recently published a book titled “The Art of Stamos Checheris” (Stamos is Tom’s Greek name) showcasing his artwork and story. Signed, first editions of the book may be purchased on his website artbyStamos.com, which also provides a link to Tom’s Web store where you can find items such as calendars, mugs, magnets, key chains and even blankets with his artwork on them. His work can also be viewed at Facebook.com/artbystamos. n

mssociety.org | 800-582-5296

MONEY MATTERS

Working and SSDI By K ris Erickson Many people living with multiple sclerosis who consider applying for Social Security Disability Insurance (SSDI) worry they could lose their benefits if they return to work, even part time. However, with some knowledge and preparation, people with MS should be able to work and maintain their benefits.

Working while applying If you’re working and considering applying for SSDI, it’s essential to understand Substantial Gainful Activity (SGA), the maximum amount someone can earn before being denied benefits. According to SGA rules, in 2012, you can make no more than $1,010 (or $1,690 for the legally blind) per month while applying for SSDI. If you’re making more money than that, your application will automatically be denied. Also, symptoms you list in your SSDI application as impediments to work should not be the same symptoms you’ve learned to accommodate successfully. For example, if someone submits an application listing gait and walking issues compounded by bladder incontinence, but uses a scooter to get around and self-catherization, that will conflict with his or her SSDI application.

Call your local WIPA If you’re already receiving SSDI benefits and are considering returning to work, contact a Work Incentive Planning and Assistance (WIPA) program first. WIPAs are nonprofit organizations with staff trained in SSDI and work issues. They can help educate people who are receiving SSDI on how to return to the work force while maintaining benefits. Visit ssa.gov/work/WIPA.html and click “Service Provider Directory” for a listing of WIPA programs by state, or contact an MS Navigator® at 800-344-4867.

Trial work period Once a person awarded SSDI returns to work, a Trial Work Period (TWP) begins automatically. TWPs allow people to test their ability to work and still be considered eligible for SSDI. Any month in which a person’s work income comes out to more than $720 counts as a TWP month. Visit ssa.gov/OACT/COLA/twp.html for more information about TWPs. If you’ve been earning at or above the SGA amount, benefits will stop after the TWP ends. However, they can restart within 36 months if your income falls below the SGA or if you lose your job and continue to meet the criteria of disability. Don’t navigate these requirements alone — call an MS Navigator® or contact your local WIPA if you suspect you’re earning more than the SGA or have other questions.

Continued on page 12

10 ADVOCACY

Victory in Medicare settlement By M arcella Durand

For years, Medicare’s so-called “Improvement Standard” denied coverage of certain treatment services to people with multiple sclerosis and other diseases. However, in October, a settlement to end the standard was reached in a nationwide lawsuit in which the National MS Society was a plaintiff. The Society joined other national organizations, including the Parkinson’s Action Network, the Alzheimer’s Association, United Cerebral Palsy and Paralyzed Veterans of America, in a class-action suit to challenge the Centers for Medicare and Medicaid Services (CMS) over the standard.

MS connection: spring 2013

The standard denied Medicare coverage for services such as skilled nursing facilities, home health and outpatient therapy benefits (like physical or occupational therapy) to Medicare beneficiaries living with MS if they did not show improvement. However, these expensive services can be critical to preventing decline or maximizing independence. The standard actually violated Medicare’s own official regulations, which state “the restoration potential of a patient is not the deciding factor” for coverage. The agreement to end the standard will vastly benefit people with MS and their families, helping place essential services back in their reach. Once the settlement is approved by Chief Judge Christina Reiss of the U.S. District Court in Vermont, where the suit was filed, the standard’s use will effectively end. CMS will revise the Medicare Benefit Policy Manual so that coverage standards will instead be based on people’s need for skilled care, regardless of improvement. In addition, CMS will conduct a nationwide education campaign about the changes, which apply to Medicare and to private Medicare Advantage plans. For more information and to follow the settlement’s progress, visit MSActivist.org, or sign up for MS eNEWS at nationalMSsociety.org/signup. n Marcella Durand is the National MS Society content planning and development manager.

mssociety.org | 800-582-5296

Giving

Giving back as a Lawry Circle member For many years, Bridget Robinson-Riegler, a university professor and Upper Midwest Chapter board member, hid her MS from everyone but her family because she was terrified of the discrimination associated with a chronic disease. Though her symptoms appeared in the mid-1980s, it wasn’t until 2000, when more treatment options became available, that she finally met with a neurologist. He offered treatment options and asked her to get involved with the National MS Society. Getting involved meant Bridget would need to tell people she had MS. This was a difficult decision — but she had the courage to help herself and others.

Freedom in sharing When attending a chapter board meeting, Bridget discovered it was easy to designate a portion of her life insurance policy to her family and a portion to the Society.

In addition, she was able to specify what program she wanted the money to fund — the National MS Society’s scholarship program. “I’m passionate about education and was thrilled to be able to direct the funds to that program,” she said. “My association with the Society has given me freedom. I am comfortable talking about my MS and no longer feel alone ... I feel special being part of the Lawry Circle — I feel appreciated, and it feels great,” said Robinson-Riegler.

The Lawry Circle The National MS Society’s Lawry Circle is comprised of donors like Bridget who have informed the Society of their intention to help create a better future for the MS community through their will, trust or estate plan. Because all deferred gifts represent an expression of lifetime commitment to the Society, there are no minimum gift levels and membership is permanent. For more information about creating your legacy in the MS movement through a planned gift, contact Jennifer at jennifer.mcgee@nmss.org or 612-335-7965. n

12 $25 MILLION IN NEW RESEARCH PROJECTS LAUNCHED New grants part of more than $44 million investment in cutting-edge research The National MS Society has just committed more than $25 million to support new MS research projects as part of a comprehensive research strategy aimed at stopping MS, restoring function that has been lost and ending the disease forever.

MS connection: spring 2013

Dr. Wensheng Lin of The University of Minnesota received a grant of $572,022 to fund studies aimed at nervous system protection and repair. “Without the support of the National MS Society, we wouldn’t be able to pursue these critical leads,” said Dr. Lin, Society grantee and lead investigator of the project researching endoplasmic reticulum stress in immune-mediated demyelinating diseases. This financial commitment is the latest in the Society’s relentless research effort, investing an estimated $44 million in 2012 alone to support more than 350 new and ongoing projects. To ensure the scientific merit of each research proposal selected, the Society relies on expert advisory committees that include more than 90 world-class scientists who volunteer their time to carefully evaluate hundreds of proposals

Continued from page 9 (MONEY MATTERS)

Why work Finally, think about what you want to get out of your work experience before starting a job. Are you trying to go back to work fulltime and get off SSDI entirely? Or do you want to work part time to help supplement your income on a long-term basis? The answers to these questions will help you decide what your employment

future can look like and better prepare you for successfully combining work and SSDI benefits. n Kris Erickson is the National MS Society health insurance manager.

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RESEARCH

Partnering on progressive MS By M arcella Durand Treatments for relapsing-remitting multiple sclerosis have moved forward, but treatments for progressive MS have remained maddeningly elusive. A newly formed International Progressive MS Collaborative intends to find out why. A far-ranging collaboration between the National MS Societies of the United States, Canada, Italy, the Netherlands and the United Kingdom, and the Multiple Sclerosis International Federation has convened, with a mission to speed the development of effective therapies for progressive forms of MS. “Overcoming the challenges of progressive MS is a key objective of the Society’s Strategic Response to MS,” said Timothy Coetzee, Ph.D., Society research officer. “This is just one of the ways we’re collaborating worldwide to speed clinical trials in progressive MS.” The collaborative’s first step was to publish an opinion paper in Multiple Sclerosis Journal that outlined the challenges in developing therapies for progressive MS. It identified five key research priorities, as follows: 1. Experimental models of MS — Animal models that more closely reflect the symptoms and underlying tissue damage of progressive MS are urgently needed.

13 2. Identification and validation of targets and every year. n repurposing opportunities — Advances in MS genetics and the systematic re-evaluation of drugs may help identify new therapeutic targets in progressive MS. 3. Proof-of-concept clinical trial strategies — Lesion activity on MRI is an accepted biomarker in clinical trials for relapsing-remitting MS, but no comparable measure has been identified for progressive MS. 4. Clinical outcome measure — Establishing clearer outcome measures for progressive MS will help evaluate possible therapies. 5. Symptom management therapies and rehabilitation strategies — Developing symptom management therapies and rehabilitation strategies in progressive MS may be advanced by targeted research and assessing potential treatments in rigorous, well-designed trials. “Tackling these issues will require an integrated, multidisciplinary approach to enable effective translation of research into therapies,” wrote the authors of the paper. (To read the paper in full, go to tinyurl.com/bdjv5ak.) The collaborative will host an international conference in 2013 to plan for forward movement in MS research. Visit nationa lMSsociet y.org/progressiveMS to learn more about progressive MS, or sign up for MS eNEWS at nationalMSsociety.org/ signup for the latest on the collaborative’s progress. n

14 Corporate spotlight

A big thank you to our corporate partners Top corporate partner returns to Walk MS

Christopher & Banks has been a dedicated supporter of the MS movement for more than a decade. We welcome them back as the title sponsor for Minnesotaâ&#x20AC;&#x2122;s Walk MS: Christopher & Banks Walk presented by Walser, as well as one of the largest teams at the event! In addition, Christopher & Banks sells an MS Jewelry Collection online and in select stores. Fifty percent of the profits from purchases of MS jewelry will be contributed to the National MS Society. Thanks, Christopher & Banks! The Upper Midwest Chapter would also like to welcome Avera Neurosciences and Neurology Associates as the newest title sponsor of South Dakotaâ&#x20AC;&#x2122;s Walk MS events. Avera Neurosciences and Neurology Associates,

MS connection: spring 2013

a division of Avera McKennan Hospital and University Health Center, provides comprehensive diagnosis and treatment of neurological conditions. Thanks, Avera!

Wine-tastings, luncheons and brunch events kick off 2013 Special thanks to the corporate partners that supported the 2013 On the Move Little Black Dress in Fargo, N.D.; On the Move Little Black Dress in Iowa City, Iowa; and A Taste of Generosity in Des Moines, Iowa. We greatly appreciate the volunteer committees who helped coordinate these events, and we thank the companies that attended and donated auction items. Top corporate supporters of these events include EMD Serono Pfizer, Teva, Acorda, Mercy Hospital and D.A. Davidson & Company.

Correction In the last issue of MS Connection, we printed an article about high-deductible health care plans with an error about annual contributions to FSAs. We stated that an annual contribution to an FSA for family plans is $5,000 beginning 2013. Correction: In 2013, IRS rules will limit the maximum annual Flexible Spending Accounts (FSAs) election to $2,500 for both individual AND family plans.

mssociety.org | 800-582-5296

Calendar of Events To learn more or register for any of the events below, please visit the Chapter Calendar at MSsociety.org or call 800-582-5296.

Independence Workshop & Expo April 6, St. Cloud, MN Learn how you can maximize your independence and stay active in your home and community at the Independence Workshop & Expo in St. Cloud, Minn.

Grieving Lost Dreams, Welcoming New Ones April 13, West Des Moines, IA Join other people living with multiple sclerosis in the Des Moines, Iowa, area to learn strategies for managing change and grief due to an MS diagnosis from licensed marriage and family therapist Thomas M. Ellis.

MS research symposium April 23, Iowa City, IA Learn about the MS research and have your expert at the MS City, Iowa.

latest, nationally recognized projects and therapies, questions answered by an research symposium in Iowa

Walk MS April 27: North Dakota May 4: South Dakota + Sioux City, IA May 5: Minnesota + Hudson, WI May 18: Iowa Walk MS will be held in 33 sites throughout the Upper Midwest Chapter. Visit myMSwalk.org to find a walk near you.

Bike MS: SAM’S CLUB Twin Cities Ride May 11, White Bear Lake, MN A one-day bike ride that begins and ends in White Bear Lake, Minn. Riders choose a 22or 52-mile route.

MS research symposium May 11, Fargo, ND Learn about the latest, nationally recognized MS research projects and therapies, and have your questions answered by an MS expert.

Bike MS: C.H. Robinson MS 150 Ride June 7–9, Duluth to the Twin Cities, MN A two-day, 150-mile bike event from Duluth, Minn., to the Twin Cities with an overnight in Hinckley.

Bike MS: Cruise the Cornfields June 22–23, Urbandale and Ames, IA A two-day ride from Urbandale, Iowa to Ames and back.

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

Wipe that dirty smile on your face MuckFest MS Twin Cities

presented by

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Saturday, Aug. 10 No fundraising minimum. Register before May 2 for just $55.