MS Connection, summer 2013 by National MS Society, Upper Midwest Chapter

summer 2013 UPPER MIDWEST CHAPTER

MS Connection Newsletter

FDA approves 10th disease-modifying treatment

INSIDE 04 THIS ISSUE

New oral therapy for MS

MuckfestTM MS returns to the Twin Cities

What are job accommodations?

Semi-truck owner helps raise awareness

2 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: summer 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

Power pallet jack

Bike rack

Dry-erase board

Digital photo printer

Thank-you cards

Gift cards (restaurants, convenience stores, etc.)

Fun stickers

Wireless keyboards and mice

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 © 2013 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 THE PRESIDENT

Celebrating advancements in research 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

This spring, the National Multiple Sclerosis Society devoted another $18 million to support up to 65 new MS research projects. These awards are part of our comprehensive research strategy — MS NOW. MS NOW, or No Opportunity Wasted, pledges to raise $250 million toward stopping MS, restoring lost function and ending the disease forever. This $18 million investment is just part of the $47 million in research dollars committed for 2013. The progress in research made in 2012 alone is astounding. This past year included the completion of the first human trial of an experimental therapy targeting the repair of myelin — the nerve fiber insulation that’s damaged in the MS disease process. It also marked the launch of the International Progressive MS Collaborative to speed research of progressive forms of MS. And for 2013 research progress, look to the feature on the latest oral therapy available for relapsing forms of MS on page 4. There’s so much to be hopeful about when there’s No Opportunity Wasted. To read more about 2012 advances made in MS research, visit tinyurl.com/MSNOWprogress. For the latest and greatest research news, head to tinyurl.com/MSresearchNews. Sincerely, Holly Anderson Upper Midwest Chapter President

4 Research

Introducing the new oral MS therapy In March 2013, the Food and Drug Administration (FDA) approved Tecfidera™ [tech—fih—DARE—ah] capsules (dimethyl fumarate, Biogen Idec –formerly “BG-12”) as a disease-modifying therapy for people with relapsing forms of multiple sclerosis. This is the third oral therapy for relapsing MS (the second approved within one year), and the 10th disease-modifying treatment in the U.S. Multiple sclerosis involves immune system attacks on brain and spinal cord tissues, and Tecfidera is thought to inhibit immune cells and molecules. Its exact mechanism is not known, but it may have anti-oxidant properties that could be protective against damage to the brain and spinal cord. A chemically related compound, called fumaderm (dimethyl fumarate and fumeric acid esters), has been used for decades in Germany to treat acute flare-ups of psoriasis. Tecfidera, which is taken orally twice per day, is a new formulation of dimethyl fumerate that was developed by Biogen Idec specifically for the treatment of MS. It wasn’t until 1993 when Betaseron®, the first disease-modifying therapy for MS, was released to market. That means in less than two decades, MS has moved from an untreatable disease to

MS connection: summer 2013

one where there are now 10 FDA-approved, disease-modifying therapies for relapsing MS, the most common form of the disease. Additionally, a significant number of other exciting therapies in late-stage development are already before the FDA for review.

Treatments in the pipeline Alemtuzumab, a monoclonal antibody that depletes circulating immune (T and B) cells thought to be responsible for MS attacks, would be administered by IV infusion for five days and then for three days one year later. Genzyme applied to the FDA for approval of alemtuzumab to treat relapsing MS, based on positive results from several clinical trials, including one that showed a 55 percent decrease in relapses compared to interferon beta 1a (Rebif ®). While this therapy is powerful against MS, there is concern regarding adverse events, such as immune thrombocytopenic purpura (ITP, a bleeding disorder) and autoimmune thyroid disorders. Laquinimod is a once-daily, oral immune modulator that proved in phase III studies to statistically decrease relapse rates, though not as robustly as investigators had hoped. This drug is being tested in another phase III study in 1,800 people with relapsing-remitting MS. Daclizumab and ocrelizumab are two other monoclonal antibodies currently under investigation, with favorable results thus far. A highly concentrated liquid formulation of daclizumab is under study

mssociety.org | 800-582-5296

in relapsing-remitting MS. Experimental ocrelizumab, given intravenously, significantly reduced disease activity on MRI scans in a study of 218 people with relapsing-remitting MS. Additional research is needed to further determine ocrelizumab’s safety and benefits.

in less than two decades, MS has moved from an untreatable disease to one where there are now 10 FDAapproved, disease-modifying therapies. The most encouraging development, in addition to the increasing number of treatments and that treatments for MS may be getting more effective, is that the research pipeline is full. Thanks to those who are committed to research funding, scientists are able to continue searching for the cure, and in that search, discover medications that will improve quality of life for people with MS.

Are you a good candidate for Tecfidera™? Studies have shown that taking a disease-modifying therapy is currently the best way to reduce MS disease activity and future deterioration. The MS Emerging Therapies Collaborative, which includes the Society, provides information to help facilitate communication between doctors and people with MS about newly approved treatments at ms-coalition.org/emergingtherapies.

Research on treatments for progressive forms of MS Research on potential treatments for progressive forms of MS is also underway, and the International Progressive MS Collaborative, of which the Society is a member, plans to do all it can to speed the development of treatments. There’s no easy way to detect progression quickly, which is one reason why development of therapies for progressive MS is behind. The Society is investing in better ways to detect the benefits of therapies for progressive forms of MS. Right now, there are large clinical trials focused on progressive MS, including tests of Tysabri®, Gilenya® and other treatments. To follow progress on MS therapies, sign up for eNews at nationalMSsociety.org/signup, or visit nationalMSsociety.org/research. n

University of Iowa granted more than $700,000 for MS research University of Iowa’s Nitin Karandikar, M.D., Ph.D., was awarded $712,800 to investigate the role of a group of immune system cells known as CD8+ T cells in MS and in a similar disease in mice, known as EAE. The results of this study could lead to new therapies to control damage to myelin in people with MS by enhancing the regulatory activity of some T cells.

6 events

MS connection: summer 2013

MuckFest MS returns, and it’s even dirtier TM

MuckFest™ MS Twin Cities sponsored by Subaru, the Midwest’s best mud and obstacle fun-run, returns Saturday, Aug. 10, to Trollhaugen Resort in Dresser, Wis. Made with mud, sweat and cheers, the five-mile course features a gauntlet of muck-filled mazes, pits and craters with more than 20 gigantic steel obstacles. The fun doesn’t stop when you slide over the finish line. There’s beer, great food and music in the MuckFestival area. The National MS Society operates on “the more, the muckier” principle, so bring your friends and family to join in the hilarious spills and thrills. We even have a specially designed mucky playlot for the kids called Lil’ Muckers. Unlike most other Society events, there’s no required fundraising minimum. But with easy-to-use online fundraising tools plus staff

support, raising money for the more than 17,000 families affected by MS in the chapter territory has never been easier. And here’s the best part: 100 percent of your fundraising dollars go to cutting-edge research and vital programs and services — helping to prove that you can have loads of dirty fun and feel good about it in the morning.

Team up Teaming up for MuckFest MS is the best way to experience the craziness — from the clever and delightfully dirty team name you choose, to the way you’ll come together on the course and party together in the MuckFestival area after the run. Oh, and it only takes two people to be on a team, so if you sign up with just one other person, you’re eligible for big team rewards!

Volunteer It takes a significant number of volunteers to welcome our muckers and monitor their exploits on the MuckFest MS course. Without a doubt, it’s one of the most enjoyable volunteer gigs around. To learn more about volunteering for MuckFest MS, visit MuckFestMS.org. n

Register now Register today for only $65; the registration fee increases July 21. For more information about MuckFestTM MS, or to register, visit MuckFestMS.org or call 800-3-GoMuck.

mssociety.org | 800-582-5296

EVENTS

Join author and chef at On the Move Luncheon Mark your calendars for the 14th annual On the Move Luncheon Wednesday, Aug. 14, 2013, at The Depot in Minneapolis! The luncheon will feature a live and silent auction, along with keynote presenter Ronda Giangreco and 2012 Novartis On the Move Leadership Award winner Kelsey Kruger. California native Ronda Giangreco was diagnosed with multiple sclerosis in 2008. After receiving the diagnosis, Ronda made an audacious vow to her family and friends that she would create a big Italian feast every Sunday night for an entire year as a means to cope with her MS. Over the course of 52 weeks, Ronda learned from the stories of others that the challenges we face help form the core of who we are and give us insight into our own strength. Attend the On the Move Luncheon to hear Ronda’s inspiring story.

can sponsor tables for $2,000 and will receive a variety of benefits for their sponsorship.

Ronda learned from the stories of others that the challenges we face help form the core of who we are and give us insight into our own strength. Want to get more involved? Join the volunteer committee and help make important decisions about the luncheon. For more information, contact Lindsay at 612-335-7976, 800-582-5296 (option 2) or lindsay.anderson@nmss.org.

The program will also feature auctioneer Marci Mannis.

The Upper Midwest Chapter hosts three other luncheons and a wine-tasting event each year. Visit MSsociety.org and click “Fundraising Events” to learn more.

Seats are $100 and available to purchase online at nationalMSsociety.org/OTM. Companies

Thanks to Acorda Therapeutics for sponsoring Ronda’s travel fees. n

8 ADVOCACY

Progress in MS advocacy Over the past several months, MS advocates were busy at state capitols across our chapter area prioritizing policy issues, monitoring bills, introducing legislation and rallying to make their voices heard. One particular focus during the legislative session was reducing roadblocks to MS care. This means ensuring that people with MS have access to the health care they need to stay healthy and live independently. For example, in Minnesota, the Discriminatory Drug Pricing Prohibition Bill, championed by the National MS Society, prohibits discriminatory pricing for certain drugs, including MS disease-modifying medications. While it didn’t pass, the bill is a critical step toward assuring fair access to affordable MS drugs as the Affordable Care Act is implemented. In Iowa, MS activists met with policy makers and insurance regulators to draw attention to potential coverage gaps for people living with MS. As Iowa prepares to offer a new insurance marketplace beginning Jan. 1, 2014, MS advocates Karrie Anderson and Kelli Winchester urged for policy solutions to address this concern. In North and South Dakota, we rallied with other advocacy organizations to support the

MS connection: summer 2013

expansion of Medicaid that would offer health coverage to tens of thousands more low-income individuals and families residents, including many living with MS. Despite legislative sessions being over, advocacy work continues. During the summer, your legislators are back in district, holding town hall meetings and attending community events. Take the opportunity to introduce yourself, talk about your connection to MS and ask them to remember your story as they make policy decisions. Remember, they work for you. If you’re interested in becoming more involved as an MS activist, visit the “Take Action” section of MSsociety.org or contact Jenna at 612-335-7981 or jenna.neher@nmss.org. n

Senator Tom Harkin named National MS Society Senator of the year U.S. Senator Tom Harkin of Iowa was named the National MS Society’s 2012 Senator of the Year. In bestowing its highest honor for public officials, the Society applauds Senator Harkin’s leadership and dedication to issues that improve the lives of people living with multiple sclerosis and their families. For more information about Senator Tom Harkin, visit harkin.senate.gov or facebook.com/TomHarkin.

mssociety.org | 800-582-5296

Living well with MS

Raising MS awareness one mile at a time

9 whole life. An MRI revealed multiple lesions on his brain. While sitting in his semi-truck, his doctor called him and said “I think you have MS, but I’d like you to come in for more testing.” Not knowing what MS was, and refusing to believe it was something more serious than headaches, he didn’t call back. A few weeks later, his neurologist called again, and Kris agreed to go in for more testing. After two more MRIs and a spinal tap, it was confirmed that Kris had MS. “I just sat there and thought ‘Why in the world did it happen to me?’ I was pretty hard headed thinking there was no way I had it,” Kris said. “My wife and I didn’t know anyone with MS, but once I got to talking to people, I realized there were more people who had it.”

Just one year after Kris Abbott, age 35, was diagnosed with multiple sclerosis, he decided to transform something he was especially passionate about into a unique way of raising awareness about the disease. Kris proudly owns a 1996 W900 Kenworth semi-truck — which covers approximately 3,000 miles a week, 26 weeks of the year — and on that semi-truck is a massive painting of a skeleton, with the letters “M” and “S” in each eye. He calls his truck “Wicked Feeling,” named after the disease he was diagnosed with only 2.5 years ago. In winter 2010, Kris decided to see a neurologist about chronic migraines he had lived with his

Kris attributes much of his strength to his wife, Shannon, and son, who have helped support him and “battle this wicked disease.” In winter 2011, only one year after his diagnosis, Kris went to work on restoring his truck, and decided to use it as a way to raise awareness about MS. Painting and Graphics in Peewaukee, Wis., and Lake Country Customs in Brookfield, Wis., helped make his dream a reality. Graphic artist Eric Taerud free-handed the skeleton mural. Decals on each window read “MS is BS,” and “Driving for a Cure” appears on the back of his van trailer. When Kris isn’t farming corn and bean fields with his father and brother in Conesville, Iowa, he’s on the highway taking questions. With

Continued on page 11

10 Money matters

What are job accommodations, and how do I get one?

MS connection: summer 2013

be things like new equipment, changes to existing equipment or a change to your work routine, such as hours worked. There are two important things to know about job accommodations: n

You must be able to perform the essential functions of your job (considered qualified), and live with a disability as defined by the Americans with Disabilities Act (ADA). The ADA does not require employers to reduce essential job functions, but you can ask to change how you perform an essential job function.

Your employer must be ADA-covered, and does not have to provide you with your first choice in accommodations. The employer has to provide an accommodation that is reasonable and effective, if available — so be ready to discuss alternatives.

By K ris Graham Job accommodations are modifications or adjustments specific to the work environment that enable a person who lives with a disability to perform the essential functions of a job. They can

ADA-covered employers include private employers with 15 or more employees, all state and local governments, employment agencies and labor unions. If you’re not sure whether your employer is covered by the ADA, contact your regional ADA Center (find out how at adata.org) or visit the Job Accommodation Network (JAN) at askjan.org. Both organizations are free and confidential resources. If your employer is not covered by the ADA, contact an MS Navigator® at 800-582-5296 to explore other legislation that may protect you. Before you request accommodations, make sure you can answer the following questions: n

How is MS affecting your job, potential job or application process?

Why are you requesting accommodations?

mssociety.org | 800-582-5296

What information will you need to provide to your employer (or potential employer) to clarify the impairment affecting your work and the accommodation that will remedy the situation?

What accommodations or changes to your work will be effective?

When should you speak with your employer (or potential employer)?

Who should you involve in the conversation?

How should you follow up on your request?

What are your rights if things go wrong?

For more information about job accommodations, contact an MS Navigator® at 800-582-5296, or refer to the helpful resources below. n Kris Graham is the National MS Society employment manager.

Additional resources The win-win approach to reasonable accommodations, nationalMSsociety.org/accommodations Your employment rights as an individual with a disability, U.S. Equal Employment Opportunity Commission’s, eeoc.gov/facts/ada18.html Employees’ practical guide to negotiating and requesting reasonable accommodations under the ADA, askjan.org/EeGuide JAN’s searchable online accommodation resource, askjan.org/soar/index.htm

Continued from page 9 (living well with MS) each road trip, Kris is asked about his truck. In the coming year, he also plans to enter his newly restored truck in competitions in Iowa, Wisconsin, and at the Mid-America Trucking Show in Louisville, Ken. “People ask a lot of questions. Most can’t believe I have MS because I’m not in a wheelchair. But I tell them about symptoms being so varied from person to person. It affects everyone so differently,” he said.

Just like MS symptoms are different, so are the ways of raising awareness. By making MS a center piece of his day-to-day life, and in such a visible, artistic fashion, Kris is building the connections that will one day destroy MS — across state lines, one mile, one person at a time. To see more photos of Kris’s truck, visit tinyurl.com/MStruck. n

MS connection: summer 2013

volunteer

Meet Jennifer (left) Jennifer Olson with husband Ronny Jennifer Olson of Wolverton, Minn., was diagnosed with multiple sclerosis on Valentine’s Day in 2005. Shortly after, she began volunteering for the National MS Society in Fargo, N.D. “I didn’t choose to have this disease, but I can choose how I want to deal with it. So I choose to help others learn to accept the disease, help educate the community, friends and family and

Volunteer opportunities The National MS Society, Upper Midwest Chapter is always looking for volunteers with a variety of skill sets. If you’re interested in volunteering for any of the events listed below, or want to learn more about volunteer opportunities at the Society, call 800-582-5296 or visit MSsociety.org.

help be the voice for those who choose not to be.” Jennifer served on the Walk MS committee for one year, has hosted rest stops for Bike MS and is a team captain for Walk MS team “Positive Paces.” Most recently, Jennifer joined Upper Midwest Chapter staff and volunteers as an MS activist at the Public Policy Conference in Washington, D.C., in March 2013. Jennifer also formed a newly diagnosed support group in Fargo. “We get together once a month for dinner to talk about whatever we need to — life, work, family and MS. Most of all, we share a bond, have become friends, and can’t wait until we get together for our next meeting.” Thank you, Jennifer, for your commitment to helping others affected by MS. n

Bike MS: TRAM Ride (International Falls, Orr, Chisholm, Biwabik, Two Harbors and Duluth, MN), July 14-19

Bike MS: Sanford Health Ride the Wind (Fargo area, ND), July 27

Bike MS: Sanford Health Pedal the Plains (Sioux Falls and Madison, SD), Aug. 3-4

MuckFestTM MS Twin Cities sponsored by Subaru (Dresser, WI), Aug. 10

Majestic Shores Resort (Maple Lake, MN), Aug. 17-22

Challenge Walk MS: Twin Cities (Twin Cities metro, MN), Sept. 28-29

mssociety.org | 800-582-5296

Giving

Why sharing your intentions matters By Chris Cheney and Jennifer McGee As new members of the National MS Society’s individual giving team, an important part of our role is supporting the Lawry Circle. The Lawry Circle honors donors 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. During our first month, we “investigated” three significant gifts received by the Upper Midwest Chapter. In one case, we were receiving monthly account statements for a person who was unknown to the Society. After extensive communications with a fund manager, we learned he had named the Society as a beneficiary of his estate. Later, we experienced a similar scenario in which we received a check from an insurance company. After hours of communication, we identified the name of the generous donor who had included us in a life-insurance policy. Shortly after, we received paperwork from an insurance company and again learned we had been named as a beneficiary on an annuity.

13 In all three cases, significant time was spent determining the donor and seeking contact information for the donor’s family so that we could thank them and let them know the very meaningful way in which their loved one’s legacy will continue via their gift to the Society. Three instances may not be an overwhelming trend, but it seems safe to assume the Lawry Circle has an actual membership that is much larger than the known membership. Midwestern values often suggest we shouldn’t seek acknowledgement for a good deed. However, by sharing your intent to give and providing contact information for who we might thank after your gift is realized, you’re helping us be better stewards of your gift. Further, by informing the Society that you plan to include us in your will or estate plan, you become a member of the Lawry Circle. Estate gifts help fund cutting-edge research and provide services for more than 17,000 people living with MS in the upper Midwest. Your tremendous generosity means a lot to those we serve, and it’s extremely important we appropriately acknowledge your support. If you would like your gift to remain anonymous, we’ll honor those wishes, as well. Either way, sharing your intention to include the Society in your will, bequest or estate plan allows us to best honor your wishes while simultaneously keeping the Society appraised of future support. Whether you have already, or are considering making a gift via your will or estate plan, contact Chris or Jennifer at 800-582-5296 (option 2). n

14 Corporate spotlight

I ride with MS

MS connection: summer 2013

Corporate partners get dirty for a good cause

Thanks to the generosity of Genzyme, cyclists who live with multiple sclerosis and participated in a Upper Midwest Chapter Bike MS ride were offered special “I Ride with MS” jerseys. By providing these unique jerseys, the MS One to One program, a resource for information about MS and treatment options, offers visibility and support for people living with the disease who participate in Bike MS. Wearing a self-identifying jersey creates opportunity for celebration, as it fosters support for riders with MS and inspires those cycling along-side. It personalizes the disease and helps connect each rider to the mission.

Thanks to muck-inspiring support from Subaru and Unilever, the Zig Zag Pits, Spider Web, Thunderstorm and Mud Baths return to Trollhaugen Saturday, Aug. 10, for the Upper Midwest Chapter’s MuckfestTM MS Twin Cities 2013. Subaru returns as the presenting sponsor, and in addition to title sponsorship support, participants will experience Subaru in a whole new way as models are imported into some course obstacles.

To learn more about the Bike MS series, visit myMSbike.org. If you have questions about the “I Ride with MS” jerseys, please call 800-582-5296 (option 2).

Unilever will once again help participants return to their previous, sparkly clean selves. Special thanks to Unilever Axe and Dove brands for supporting this year’s Muckfest participants!

This program was made possible through a partnership with Genzyme and MS One to One.

To learn more about Muckfest MS, see page 6, or visit muckfestms.org.

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.

Midwest Teleconference Series July 8, teleconference MS-certified nurse Douglas Schell presents “Wake up!” a one-hour teleconference.

Bike MS: TRAM Ride July 14–19, North Shore and Iron Range, MN Join nearly 1,000 cyclists on a five-day cycling vacation through northeastern Minnesota.

Bike MS: Sanford Health Ride the Wind July 27, Fargo, ND Ride 45, 75 or 100 miles toward a world free of MS.

Bike MS: Sanford Health Pedal the Plains Aug. 3–4, Madison to Sioux Falls and back, SD Sign up for a two-day ride from Madison to Sioux Falls, S.D., and back. Choose between 50- 75- or 100-mile route options.

MuckFest MSTM Twin Cities sponsored by Subaru Aug. 10, Dresser, WI MuckFest MSTM returns to Trollhaugen Resort in Dresser, Wis., with more than 20 obstacles.

On the Move Luncheon Aug. 14, Minneapolis, MN Enjoy a unique luncheon that includes a silent and live auction, plus inspiring speakers.

Challenge Walk MS: Twin Cities Sept. 28–29, Minneapolis, MN Walk with purpose on this 50k, two-day event, featuring the very best of the Twin Cities metro.

Call for board nominations The governance committee is considering candidates to serve on the Upper Midwest Chapter Board of Trustees. To propose a candidate, please mail nominations to Attn: Sue Christensen, 200 12th Ave. S., Minneapolis, MN 55415, by Aug. 9, 2013. The committee will select the best-qualified candidates and present a slate of nominees at the next annual meeting.

Nonprofit US Postage

PAID

Twin Cities, MN Permit No. 1759

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

Twin Cities: Sept. 28–29, 2013

2 days. 50k.

CONNECT TO END MULTIPLE SCLEROSIS

ACCEPT THE CHALLENGE! 2dayChallenge.org