MS Connection Spring 2015 Issue

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SPRING 2015 | National Multiple Sclerosis Society-Wisconsin Chapter


Take Action National Multiple Sclerosis SocietyWisconsin Chapter Board of Trustees Tom Golden, Chair M3 Insurance Solutions, Inc. Michael Lutze, Vice Chair Ernst & Young James Rose, Vice Chair Baker Tilly Virchow Krause, LLP Pamela Evason, Vice Chair Windermere Wealth Advisors, LLC Kenneth Minor, Treasurer Sonic Foundry, Inc. Robert Sowinski, Secretary Diversified Insurance Solutions David Rodgers, Past Chair Briggs & Stratton Corporation Colleen Kalt, President & CEO National MS SocietyWisconsin Chapter

Anne Brouwer McMillianDoolittle, LLP Robert Buhler Open Pantry Food Marts of Wisconsin, Inc. Dennis Christiansen Secured Retirement Strategies Group, LLC Robert deJong Rose & deJong, S.C. Robert Engel Retired, M&I Bank Paul Jones Harley-Davidson, Inc. Fr. James Kaestner Retired Wayne Larsen Ladish Company Foundation Martin McLaughlin Reinhart Boerner Van Deuren, s.c. David Raysich Plunkett Raysich Architects Jeffrey Steren Steren Management/ McDonald’s

MS Awareness Week occurs every March and people all across the country take this opportunity to wear orange and more importantly raise awareness by letting others know what multiple sclerosis means to them. But it’s not about raising MS awareness for just one week. It’s about keeping that momentum going all year long. It’s also about taking action … for your loved one, a dear friend or perhaps yourself. Form a team for Walk MS. Check the box on your income tax form to donate to MS financial assistance. Join the Lawry Circle like Peach and Tom (Page 3). Educate others on what MS is and how it impacts you. These actions make a difference. These actions show support of a loved one, help people with MS maintain independence and fund critical research. So let’s keep the momentum going. How will you take action? In gratitude,

Colleen G. Kalt President & CEO

If you or someone you know has MS: 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. Talk to your health care professional or contact the National MS Society at nationalmssociety.org or 1-800-344-4867 to learn about ways to help manage multiple sclerosis and about current research that may one day reveal a cure. The National MS Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The National MS 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 MS Society recommends that all questions and information be discussed with a personal physician.

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The National MS Society is committed to creating a world free of MS.


Walking Together For the Robinsons, Walk MS in De Pere is all about relationships

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each and Tom Robinson are avid antiquers. They’ve traveled to find them, collected them and furnished their Cape Cod style house with them – including three tall case (grandfather) clocks dating back to the 1700s. “My wife has always been interested in old things. That’s why she likes me today,” jokes Tom. The couple has been married for 52 years, so long – and so happily – that they really are that couple who finishes each other’s sentences. “He’s my sweetheart,” Peach says. “It’s a mutual admiration society,” he assures. And it’s a relationship that’s been made stronger by MS. Peach was diagnosed in 1975 after experiencing numbness in her feet and legs. She says she was devastated by the news. Tom says they both were. They had moved to De Pere from Green Bay and there weren’t any neurologists in the area. “There were no treatments, so visiting the neurologist really did no good other than giving you someone to talk to about MS,” Peach remembers. Steroids were used when she had flare ups, which came every three to four years. They would affect her vision, then leave her with some small but lasting residual effect. Peach tried not to let it slow her down. After all, she and Tom had three young sons who were actively involved in sports. “It changes your life,” she says of MS, “but you carry on.”

Peach and Tom Robinson say their 52-year marriage has been made stronger because of multiple sclerosis. They helped start Walk MS: De Pere to support everyone affected by the disease.

Peach joined the National MS Society-Wisconsin Chapter’s Board of Trustees it the mid ‘80s and was named MS Mother of the Year, an honor the Chapter used to award annually. Then she and Tom were asked by the Chapter to start a walk in De Pere.

Bringing Walk MS to De Pere

“ We’re in this together. Just remember that.” - Tom Robinson

“I said, ‘Oh my goodness. Do you know what you’re asking?’” Peach recalls of her reaction. “I told Tom, ‘I can’t do this by myself.’ He said ‘I’ll help you.’ I said ‘We can’t do this by ourselves!’ Then the kids said, ‘We’ll help you.’”

The couple did so, together. Peach recalls Tom telling her, “We’re in this together. Just remember that.” They participated in Walk MS when it began in Milwaukee. They moved to the walk in Appleton when that one was launched.

So the family of five took it on, and found a community of people who wanted to help. Together they were all determined not to spend a penny, even with deciding the walk would include a breakfast and a lunch. That meant scouring the city for support, and being prepared for every Continued on Page 4

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at a terrific location (West De Pere High School), and “an awful lot of good volunteers.” They’ve also seen the results of their labor. “All those funds raised over the years at Walk MS have been put toward finding out about MS. Look at the number of drugs available today. That’s where we’ve seen the wonderful things happening,” Peach says. Walk MS: De Pere marks its 20th year in 2015. Tom and Peach Robinson (second and third from left) have been part of it since the beginning, along with sons (l-r) Todd, Jon and Perry. Continued from Page 3

possible outcome in early spring in Wisconsin. (Yes, they had snowblowers on stand-by in case it snowed.) But all in all, the couple says, the 1995 start-up committee succeeded.

“ Now, 20 years and more than $1 million in fundraising later, Walk MS: De Pere is celebrating a milestone anniversary... “ Now, 20 years and more than $1 million in fundraising later, Walk MS: De Pere is celebrating a milestone anniversary. Tom and Peach have turned the reins over to new leaders and are stepping away from the committee, but not from the walk itself. They feel the event planning is in good hands: a great committee (including sons and a daughter-in-law), the support of the staff

Lawry Circle members demonstrate their commitment to improving the lives of those affected by MS by establishing a deferred gift for the Society through their will, trust or estate plan. Through their generosity, Lawry Circle members offer a lasting legacy of support to all people affected by MS. To learn more, visit nationalmssociety. org/Donate/Giving-Circles/LawryCircle. MS Connection | 4

When Walk MS began, there were no FDA approved treatments for MS. Today there are 15 for the most common forms of the disease. “MS is still a scary thing,” she adds, “but with all the resources the Society puts toward research, one of these days, a cure is going to be found.” It’s something the couple believes in so strongly that they also became members of the National MS Society’s Lawry Circle a few years ago by making a defined gift to the Society in their will – making sure their commitment to ending MS will endure.

The Power of Relationships

“Tom and Peach’s story is truly one of love, not only for each other, but for everyone living with MS,” says Colleen G. Kalt, president and CEO of the Wisconsin Chapter. “They were the start of this community rallying point in De Pere – one couple who have created a way for an entire community to connect and help those touched by the disease.” The Robinsons agree that Walk MS is empowering. Those who have MS see there are others in the community living with it. Those who love someone with MS can literally show their support. It’s a way to rally, together. “It helps them realize there is hope,” Tom says. “It buoys them up, especially when you’re newly diagnosed.” It buoys them up after 40 years, too. Peach recounts a story that one of her daughter-in-laws shared about a grandson whose schedule didn’t look like it would allow him to be home for Walk MS this year. “He said, ‘Mom, I have worked for that walk every year and I – will – be – home.’ “It warms my heart and makes me feel loved to have everyone there.” n


Understanding MS Genetics Research

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eople affected by multiple sclerosis sometimes ask me: “It’s great that they found another gene that is linked to MS, but what does it mean for me?” Well, the genetics research presented at the annual meeting of the Americas and European Committees for Treatment and Research in MS (ACTRIMS-ECTRIMS), held in Boston this past September, has given me great answers.

How Genes Interact

Dr. David Hafler of Yale University launched the discussion about genes and MS when he delivered the keynote lecture during the opening ceremony. He was the founder, with other researchers, of the International MS Genetics Consortium, a team that has turned MS genetics on its ear. “Virtually every MS geneticist on earth is working together,” he declared, and spoke eloquently about where we are in the search for MS genes. He noted that there will likely be hundreds of MS risk genes uncovered eventually. “Each [gene] by itself has a small effect on disease risk, but each interacts with the environment,” he noted. “These are not bad genes, and it’s not a bad environment – it’s a bad interaction.”

BY CLAUDE SCHOFIELD, PHD Dr. Claude Schofield is the director of Discovery Research at the National MS Society. Dr. Schofield completed his undergraduate work at the University of Wisconsin-Madison.

Mapping MS Susceptibility

Dr. Philip De Jager of Harvard, recipient of the 2014 Barancik Prize for Innovation in Research, presented the Consortium’s latest findings – a replication of its pivotal genetics study, published in Nature Genetics (online, September 29, 2013), that identified 48 new genetic variants associated with MS based on data gathered from 30,000 people with MS and more than 50,000 controls without MS. Gene research is grueling – data from thousands of people with

“ ...data from thousands of people with and without MS need to be gathered in massive numbers ... “

- Dr. Claude Schofield Continued on Page 6

More than 159 genetic variations related to MS have been identified.

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Continued from Page 5

and without MS need to be gathered in massive numbers, and then all those data must be replicated. Dr. De Jager announced that after studies involving over 80,000 people, they now have identified more than 159 genetic variations related to MS, and more importantly, have begun to identify the specific immune cells and proteins involved, and how much weight each one carries. “We have created a reference map of MS susceptibility,” said Dr. De Jager. “Now we turn to the task of understanding the biology of MS susceptibility.”

Exploring Differences

Dr. Noriko Isobe of University of California, San Francisco, and the Consortium, reported on how genes differ between African Americans and Caucasians with MS, following up on a 2013 study published in Neurology (online, June 14, 2013). Eight novel genes were identified among African Americans with MS that were not uncovered in the larger gene scans. We’ve seen that the experience of African Americans with MS is different from that of Caucasians, and this study is putting us on the road to finding out why. Susan, diagnosed in 1995

Genes and Vitamin D

Dr. Jennifer Graves of University of California, San Francisco and the Network of Pediatric MS Centers reported on findings from an ongoing study led by investigators nationwide of what triggers MS in children. They showed that vitamin D status, which has been linked to MS risk, was associated with MS relapses only if children have a specific immune gene. The original study included 185 kids, and this group is collecting data on hundreds more. Trials of vitamin D supplementation are ongoing, so I’m hopeful that future findings will show who may be helped most by this strategy.

Translating the Data

Taking a big step toward translating all of this gene data, Dr. Nikolaos Patsopoulos of Brigham and Women’s Hospital and colleagues from a range of institutions in Boston examined which proteins interact with the 159 genes that have been pinpointed by the Consortium. Then they cross-linked this information with the “druggable genome”– a data set on how existing therapeutics interact with the genome – and identified more than 2,000 possible therapeutic interactions.

“ Genetics research is a huge part of our efforts to end MS forever... “

- Dr. Claude Schofield

Genetics research is a huge part of our efforts to end MS forever because by understanding factors that may cause MS, we’re better able to target research of solutions to those specific factors. This meeting has given me a lot of hope that we are on the right path to doing just that. n Originally published on MSconnection.org/blog. To follow the latest MS research, visit nationalMSsociety.org/research, or sign up for MS eNEWS at nationalMSsociety.org/signup.

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Connect for MS Awareness Month

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arch is MS Awareness Month and March 2-8 is MS Awareness Week – a time to encourage everyone with a connection to get involved in the MS Movement. It’s estimated that everyone in Wisconsin knows someone touched by the disease, since the state is believed to have one of the higher prevalence rates in the nation. More than 11,000 children, women and men have been diagnosed.

Every Connection Counts

How can you get involved to raise MS awareness and help those with multiple sclerosis? Here are four easy ideas: 1 REGISTER TO PARTICIPATE IN WALK MS. It’s the easiest way to get involved, it’s a great way for friends and family to rally for everyone diagnosed with MS, and the money raised supports research, programs and services. The “I Walk with MS” program also honors those diagnosed with MS. There will be 20 Walk MS events throughout the state in April, May and September, but many individuals and teams register and fundraise in March in honor of MS Awareness Month.

2 MAKE A MARK FOR MS. Wisconsin’s tax check-off program allows everyone to donate through their state income tax form. Every dollar donated for multiple sclerosis stays in Wisconsin. This year $75,000 must be raised in order to maintain MS in the program next year. Make a donation on your state income tax form and ask all your friends, neighbors and family members to do the same as a way of honoring MS Awareness Month. 3 WEAR ORANGE. Orange is the signature color for multiple sclerosis. Wear it, and let everyone know why. 4 VISIT MSCONNECTION.ORG. Join thousands of people supporting one another and exploring the issues affecting those living with MS. Find peer-to-peer support, learn more about MS, donate and discover other ways to get involved. n

MS Summit is the Wisconsin Chapter’s capstone event for MS Awareness Week. The annual day of education and networking is free to attend and includes updates on living well with MS plus the latest in MS research. Visit wisMS.org for details on the March 7 program.

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Ready to learn more about relapsing You and your loved one are invited to an MS LIVING EVENT. Hear from MS experts and others who are living with MS. Plus, get some answers about dealing with MS and information on an oral treatment. WEDNESDAY, APRIL 8, 2015 12:00 P.M. EXPERT SPEAKER Bhupendra Khatri, MD, Center for Neurological Disorders Trattoria di Carlo Event Code: 8469 South Howell Avenue, Oak Creek, WI 53154 TR282350 (1208666) WEDNESDAY, APRIL 15, 2015 6:00 P.M. EXPERT SPEAKER Thomas Berentsen, MD Benvenuto’s Italian Grill 1621 Progressive Parkway, Platteville, WI 53818

Event Code: TR282028 (1207674)

WEDNESDAY, APRIL 22, 2015 6:00 P.M. EXPERT SPEAKER Michael Connor, DO, Neurologist Maggiano’s Little Italy 2500 North Mayfair Road, Wauwatosa, WI 53226

Event Code: TR282349 (1208377)

MONDAY, MAY 18, 2015 6:00 P.M. EXPERT SPEAKER Jessica Szpak, PA, MS Specialist Biaggi’s Ristorante Italiano 601 Junction Road, Madison, WI 53717

Event Code: TR282039 (1208365)

A meal will be provided. Free parking or valet available. PLEASE R.S.V.P. AT mslivingevents.com or call 1-866-703-6293. Register today. Space is limited. US.MS.MSX.14.03.017 PAID ADVERTISEMENT

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Bringing It Home for Bacon Tax check-off donations critical in helping those with MS

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renda Bacon can describe firsthand how multiple sclerosis can strip someone of their independence. After 19 years of living with the disease herself, it had become progressive and she was finding it difficult to flex her legs. That made walking difficult and turned the stairs at her farmhouse into a safety hazard. There was talk she would need to move to a nursing home. She had just turned 50 in October. But the Eagle River resident found help thanks to fellow Wisconsinites who made donations for multiple sclerosis through their tax forms last year. Those funds helped Bacon and her husband afford the installation of a motorized lift at their home. With it, Bacon can go out and come in safely with just the touch of a button.

“ Now I can go outside with my walker whenever I can and want to .“

- Brenda Bacon

She retains her independence and says her quality of life has improved – both hallmarks of what dollars donated for MS through the state’s tax check-off program are meant to do. “One takes for granted being able to go up and down steps and just walking around until you cannot do it. You become very isolated,” she explained. “Now I can go outside with my walker whenever I want to, and have peace of mind that I can stay in the home we built on the orchard over 30 years ago. “Your tax donation has given me a whole new life,” she added in wanting to thank those who donated.

Wisconsinites such as Brenda Bacon (above and at right with her family) were helped thanks to money donated through the state’s tax check-off program. At least $75,000 in donations is needed this year in order to keep multiple sclerosis in the program.

It’s critical that everyone in the state with a connection to MS makes a donation through their state income tax form and ask everybody they know to do the same. Each dollar is tax deductible and stays in Wisconsin to help those with MS who are in financial need. n

Designate a donation for multiple sclerosis on your Wisconsin Income Tax Form and ask everyone you know to do the same.

Program Changes Could Put Others at Risk

Unfortunately, changes to Wisconsin’s tax checkoff program – which go into effect this year with the 2014 tax filing – could erase $75,000 or more in financial assistance for those with MS. That will affect the quality of life for some people diagnosed with MS and put them at a greater risk in being able to maintain their independence. MS Connection | 9


“ Walk MS brings awareness, and if we don’t do that, how will people ever know what MS is?” –M arie Robinson

Walk MS Team Captain

Rally for everyone affected by MS. Register for Walk MS, invite others to join you and start


WALKING FOR MS “ The average person can get more spoons. With MS, you can’t.” That’s how Marie Robinson can best describe her Walk MS team name as well as what it’s like to live with MS. Both come from “The Spoon Theory,” a way of describing what it’s like to live with a chronic disease by comparing spoons to the number of actions one can complete in a day. People who are healthy have an unlimited supply of spoons, but those with a chronic disease have a smaller quantity that varies day to day. Team “Hoping for Spoons,” led by Robinson, was born from that idea. They participated in last year’s inaugural Walk MS: Oshkosh and raised more than $1,500 – money to fund research that can give everyone with MS more “spoons” to get through their day. “Walk MS brings awareness, and if we don’t do that, how will people ever know what MS is?” said Robinson, who was diagnosed in 1991. She added that it’s equally important for people diagnosed with MS to be involved as it is for those who care about them. “It’s not just your illness. It affects your whole family. You have to have people around you who understand what you’re going through, and they understand that better at the walk.”

fundraising today at walkMS.org


Annual Meeting and Celebration Honoring those who fuel multiple sclerosis advancements

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hose who helped fuel advancements in treating and understanding multiple sclerosis in 2014 were honored during the National Multiple Sclerosis Society-Wisconsin Chapter’s annual meeting and celebration, held December 9, 2014 at the Chenequa Country Club.

Dan Erschen, owner of Wisconsin Metal Parts in Waukesha, was presented with the Chapter’s Impact Award in recognition of his efforts in improving the lives of those with MS. Erschen, who has MS, has created an exercise studio at his business that caters to individuals with the disease. With his encouragement, members of the workout group have gone on to participate in the Wisconsin Chapter’s Walk MS, Bike MS: TOYOTA Best Dam Bike Tour and Challenge Walk MS events, as well as the annual indoor triathlon at West Wood Health and Fitness Center in Pewaukee.

(L-R) Peter Buerosse from Pewaukee and Steve and Suzy Garrison from Waukesha were among those who attended the annual meeting and celebration at the Chenequa Country Club.

Alexander Ng, PhD, FACSM, and Kelly Malucha, RN, were recognized for their induction into the National MS Society’s Volunteer Hall of Fame in November. Ng is an associate professor at Marquette University and the Medical College of Wisconsin, and a Fellow of the American College of Sports Medicine. Malucha is an MS certified nurse at the Center for Neurological Disorders at Wheaton Franciscan Healthcare. Wisconsin researchers Hao Zhang, PhD, assistant professor at the Medical College of Wisconsin, and Bonnie Dittel, PhD, from the Blood Research Institute BloodCenter of Wisconsin, were recognized as recipients of a nearly $650,000 Society grant to study whether blocking free radicals in an MS model will provide clues to stopping disease progression. Theirs is among the 380 new and ongoing studies being funded currently by the Society. It was announced at the meeting that the Wisconsin Chapter raised $4.7 million during Fiscal Year 2014 and contributed to the recordbreaking $50.6 million dedicated to global research by the Society in 2014. n

Dan Erschen (left), recipient of the 2014 Impact Award, with Dave Rodgers, past Chapter Board of Trustees chair and CFO for Briggs & Stratton Corp.

Alexander Ng, PhD, FACSM, and Kelly Malucha, RN, were both inducted into the National MS Society’s Volunteer Hall of Fame in 2014. MS Connection | 12

(L-R) Sarah and Milton Hwang from Bayside and Pam Kriger from Milwaukee also attended the celebration, which honored those who helped fuel the MS Movement in 2014. Sarah was Wisconsin’s top Walk MS fundraiser last year.


More than 130 Snowmobilers Gather for 32nd Annual Fundraising Event

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now-covered trails and a friendly atmosphere set the scene for the 2015 MS Snowmobile Tour. More than 130 snowmobile enthusiasts and volunteers – including a record number of rookie riders – came together in Lac du Flambeau in January for the event. Participants have already raised more than $270,000 and donations are still being accepted. Over the course of the Tour’s 32-year history, participants have raised more than $7 million for MS-related research, programs and services. n

The 2016 MS Snowmobile Tour is January 28-30 and will be headquartered at the Potawatomi Carter Casino and Hotel in Carter, Wis. Register at MSsnowmobiletour.org or by calling 262-369-4400.

Grants Support Research, Programs and Services The Wisconsin Chapter thanks the following organizations for the grants recently awarded in support of research, programs and services that are critical to people affected by MS. • • • • • • • • • • • •

$25,000 Ladish Co. Foundation $10,000 Acorda Therapeutics, Inc. $10,000 Edward U. Demmer Foundation $5,000 David V. Uihlein Foundation $5,000 Jack DeLoss Taylor Charitable Trust $ 5,000 Krause Family Foundation Fund at Schwab Charitable Fund $ 5,000 Lux Foundation, Inc. $5,000 Puelicher Foundation, Inc. $5,000 The Victor & Christine Anthony Family Foundation $4,500 Briggs & Stratton Corporation Foundation, Inc. $4,000 Northwestern Mutual Foundation $2,000 Barrow Medical Foundation

• $2,000 Oshkosh Area Community Foundation • $1,000 Greater Milwaukee Foundation – West Bend Mutual Insurance Co. • $990 Greater Milwaukee Foundation – David C. Scott Foundation Fund • $250 Telly Foundation, LTD • $246 Leeds Township Charity Fund • $100 Geraldine V. Hoffmeier Fund, a donor-advised fund of Fidelity Charitable Gift Fund • $100 Madison Community Foundation – Ragatz Fund • $50 James & Nancy Youngerman, a donor-advised fund of the Jewish Federation of Madison • $50 Treharne Family Charitable Giving, a donoradvised fund of Fidelity Charitable

In total, more than $90,000 was received in gifts and grants from October through December. If you are connected to a foundation that you would like to suggest for a grant opportunity, or for more information on how you can help, contact Cindy Yomantas at 262-369-4431 or cindy.yomantas@nmss.org. MS Connection | 13


MS Crusader, Artist and Fundraiser Patricia Heller uses creativity to raise funds for MS

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atricia Heller, of Sevastopol, Wis., not only uses her talents to raise money for multiple sclerosis, she inspires others to do the same. Individually she has raised more than $63,000, and her team has generated more than $248,000. Patricia, who was diagnosed with MS in 2005, said,“My life changed overnight. I was no longer able to climb the steps in my dream home. I couldn’t ride my bike, hike, play golf or canoe.”

Patricia Heller (fourth from right) and her Challenge Walk MS team Multiple Screwballs raise funds and host rest stops.

But that didn’t mean she was going to give up. “It was time to re-create my life,” she explained. She left her career as a middle school principal and started painting. She and her husband, Tom, downsized from a five-acre home to a condo in Door County. And they got involved with Challenge Walk MS, a National Multiple Sclerosis Society-Wisconsin Chapter fundraising event held in September in Door County.

“ It was time to re-create my life. I started painting and making greeting cards and decided to sell them to raise money for MS. “ - Patricia Heller “I started painting and making greeting cards and decided to sell them to raise money for MS,” Patricia said. “We volunteered at Challenge Walk MS and after that we were hooked. Along with many friends and relatives, we started to produce cards to sell at local stores. That was almost eight years ago and now we have our cards in about 10 different shops and cafes.” Creating and selling the cards gave Patricia a sense of purpose. “I spent my whole life in MS Connection | 14

positions of giving and supporting,” she said. “I needed to find something that I could continue to give.” Patricia’s artistic creations also include handmade greeting cards, glass sculptures, knit items and watercolor paintings.

Team Effort

Over the years the Hellers’ team of fundraisers, called Multiple Screwballs, has Patricia Heller grown significantly, from five volunteers the first year to a team of more than 20 walkers and volunteers last year. Patricia and her team host fundraising events such as watercolor classes, wine and cheese parties, Zumbathons and in-home bingo parties. They also host rest stops at Challenge Walk MS, with fun themes such as Saturday Night Live, the Olympics and ‘50s Rock and Roll. Patricia explained her team’s motivation to keep generating funds for MS. “Our team is now comprised of friends of friends, relatives of friends, and relatives of relatives – all with connections to MS: mother, brother-in-law, niece, uncle, friend. All having MS. All needing our help. These people are our motivation. If not us, who?” n Written by Nick Foster, a marketing communications volunteer for the Wisconsin Chapter, and a recent graduate of Mount Mary University, where he studied English with a concentration in creative writing.


Year in Review

Holding a Do It Yourself Fundraiser is a fun way to raise both awareness and funds for multiple sclerosis. There are cook-offs, dances, bowling tournaments, bake sales and more. New in 2014, some DIY Fundraisers competed in athletic events and used the opportunity to raise funds through the Finish MS program. More than 165 DIY Fundraising events were registered with the Wisconsin Chapter in 2014, which is an increase of 50 over the previous year. The events are listed here, along with the name of the organizer and the dollars raised as reported to the Chapter.*

JANUARY New Year’s Eve Party Denise Johnson RAISED $1,208 Polar Bear Dash Chris Ponteri RAISED $1,000 Make a Difference Mondays at Quaker Steak and Lube (Janesville) Brian and Kate Fuchs RAISED $130

Denim Day Waukesha County Jessica Morris RAISED $884.50 9th Annual Help Find-A-Cure for Multiple Sclerosis Benefit Ben Romenesko RAISED $32,000 2nd Annual MS Volleyball Tournament David and Lindsay Koch, Heather Pokorsky and Richard Prausa RAISED $1,040

DIY Success Story It’s tough to resist the smell of freshly barbequed ribs and nearly impossible to say no to a 5-year-old selling lemonade. Patrick Lennartz, Manager – Indirect Taxes for Ernst & Young LLP in Milwaukee, counted on both in his fundraising efforts. Lennartz, along with daughter Erin, raised $650.

* DIY Fundraisers and totals raised as reported to the Wisconsin Chapter as of February 1, 2015. Some events did not report their final results.

For more information about holding your own DIY Fundraiser in 2015, contact Ashley Wissinger at ashley.wissinger@nmss.org or 262-369-4426.

Zumbathon for MS Emilie McClure and Hayley, Marian and Molly Rezel RAISED $338 Redmond Company Red Day The Redmond Company RAISED $76 Tears for Beers Dan Gotzler RAISED $520 2nd Annual MS ShootoutRacquetball Tournament Tom Griffith RAISED $1,600 30th Annual MS Silent Auction and Fundraiser Paul Stoltman RAISED $7,655 Help Find a Cure Chili’s Fundraiser (Appleton) Jan Ebben RAISED $182.72 Appleton North Coffeehouse Appleton North High School Student Council RAISED $500 MS Connection | 15


Year in Review

Ag Drive Chili Cook Off Terri Williams RAISED $133

FEBRUARY 12th Annual Rabbits Unlimited LTD Rabbit Hunt Don, Tom and Alan Bell RAISED $35,690 West Salem Student Council MS Fundraiser Mariah Nichols RAISED $400

MARCH 6th Annual “Family Fun Day 4 MS” featuring Texas Hold’em Connie Plier RAISED $8,214 Charity Jamboree: Music Can Beat MS Steve and Jane Schmieding RAISED $7,015

Christin Harding organizes Brew at the Barn, a tasting event featuring master home brewers and vintners from throughout south central Wisconsin. A barbeque competition was also included. The fifth annual event raised $2,200.

Rummage Sale Lorraine Lahdenpera RAISED $50

12th Annual Blarney Bash for MS Ashley Gorski RAISED $32,992

Coulee Region Chill MS Fundraiser Michelle Bryant RAISED $3,225

Fight MS … Eggroll Style Milton and Sarah Hwang RAISED $6,492

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PyraMax Bank Casual Day (Greenfield) RAISED $260

Team Survivor Zumbathon Denise Johnson RAISED $100

Hoops for Hope Arrowhead Union High School Student Senate RAISED $1,750

Fox Communities Credit Union Dress Down Day (Appleton) Fox Communities Credit Union RAISED $280.80

St. Patrick’s Day Eve MS Fundraiser Peggy and Jim O’Leary and Linda Wagner RAISED $8,130

Johnson Controls Employee Fundraiser Verna-Lou Moschella RAISED $1,508.87

DIY Success Story

Kortelopet – Birkie – Finish MS Ellen Cochran RAISED $1,245

Great Clips Denim Days Sara Frame RAISED $60

Dance for a Cure Angel Barber RAISED $520 Kappa Beta Gamma 12th Annual MS Benefit Heidi Hoffman and Anne Plourde RAISED $4,266.25

Shamrock Spin-A-Thon Lori Kolosowsky RAISED $200 Moonlight Bowling Trudy DeRemer RAISED $500 MS Fundraiser Benefit in Honor of Scott Charney Cozy Inn RAISED $3,000 MS Fundraiser at the Barn Kathy Crull RAISED $3,209.50


Year in Review

Massage Marathon for MS Chris Kinjerski and Jesse Walters RAISED $443 St. Mary & St. Mathias Catholic School Non Uniform Day Emily Wolf RAISED $167.45 Team CCC Kick Off Party Curt Sauser RAISED $560 Altra Federal Credit Union Employee Jeans Day Altra Federal Credit Union RAISED $139.57 Lakeland College Athletic Department Fundraiser April Arvan RAISED $2,125 Greenheck Jean Days Peggy Roble RAISED $1,252 Sterling House Jeans for a Cause (Neenah) Christine Gregorious RAISED $25 Piggly Wiggly Non-Profit of the Month (Mequon) Marci Waldkirch RAISED $125.90

Barbequed Ribs Sale Patrick Lennartz RAISED $500

APRIL Orange You Glad You Walk for MS Fundraiser Jennifer Cot, Damari Cuevas and Roshelle Weist RAISED $1,250 7th Annual Open House Fundraiser Karen Minor RAISED $475 Cinnamon Roll Sale Emily Cunningham RAISED $829 Robyn’s Birthday Celebration Robyn Turtenwald RAISED $1,960 Culver’s Share Day (Cross Plains) Steve Nonn RAISED $799.87 Walgreens Bake Sale (Wausau) Merill Keen and Melani Larsen RAISED $498.50 MS Fundraiser Nancy O’Leary RAISED $6,125

UnitedHealthOne Dress Down Day UnitedHealthOne RAISED $85

Jan’s Fans Pulling for a Cure – Water Ski Show Tom Hart RAISED $2,380

Monona Meadows Fundraiser Whitney England and Lani Thomas RAISED $88

Humana – Jewelry is Fun Fundraiser Molly Cowan and Jenni Oliver RAISED $662.89

Howard Elementary Penny Wars and Walk Vonnie Voight RAISED $50 Jeans Day School District of Cudahy RAISED $1,120 Walk With Strength – 5th Annual Awareness Walk Zach Mielke RAISED $8,500 Silent Auction Held at Walk MS: De Pere Mary Perna RAISED $2,520 Golf Fore MS Vic Erickson RAISED $5,400 Bently Charity Raffle Kelly Jordan RAISED $290 Team Hammer MS Fundraiser Karen Rude-Pierce RAISED $2,061 “I’m not drunk – I have MS” Flower Fundraiser Mike and Tracy Bender Raised $220 Sargento Jeans Day Fridays Joan Butters RAISED $656.97 JJ Keller Fundraiser Mac Johnson RAISED $545.74

MS Connection | 17


Year in Review

Dynacare Laboratories Jeans for Charity Betty Van Dyke RAISED $480

Cellcom Green Bay Half Marathon – Finish MS Howard Herrild RAISED $215

MAY

The O’Hare Family Charitable Giving Spring Clay Shoot John O’Hare II, John O’Hare III, Gerald Jones and Geri Price RAISED $4,760

MS Gets on Our Nerves Benefit Basketball Game Autumn Neugent RAISED $3,000 Walk MS: Madison Raffle Susan Lerdahl Raised $1,415 9 Pin Tap Bowl-A-Thon Julie Madden RAISED $4,092 Benvenutos Supports Walk MS (Madison) Autumn Neugent RAISED $500 Chancery Give Back Night (Mequon, Milwaukee, Waukesha and Wauwatosa) Allie Conway RAISED $351.18 Uno’s Chicago Grill Dough Raiser (Menomonee Falls) Robyn Turtenwald Raised $24.76 RD Benefit Ride Rick Olson RAISED $3,400 Fox Valley Road & Track Classic XIV Roy Fine RAISED $2,490

MS Connection | 18

Wells Fargo Fundraiser (Brookfield) James Van De Ven RAISED $205 Eat to Beat MS on World MS Day at Glass Nickel Pizza Corey Dintelman RAISED $3,957.38 UFS Fund Drive to Benefit MS Kristine Wierzbinski RAISED $1,020 Blurred Lines Brat Fry Stacey Remington RAISED $2,445

JUNE Make a Difference Mondays at Quaker Steak and Lube (Janesville) Brian and Kate Fuchs RAISED $220 2nd Annual Teed Off for MS Benefit Golf Outing Carla Knitter RAISED $1,357 10th Annual Neipert Golf Outing Alan and Nicki Neipert RAISED $2,250

Brew at the Barn Christin Harding RAISED $2,200 Bag MS at Hartfest Sponsored by Wachtel Tree Science Joe Fangmann RAISED $3,513 Rummage and Bake Sale Alicia Osiecki, Amy Zumach and Colleen Zwitter RAISED $2,601 Damn Yankee’s Watering Hole Duck Races Ron Scherwinski RAISED $5,376 The 3rd Annual Gamble Scramble Fore MS Josh Giersch and Dwayne Sweeney RAISED $4,492.74 FIS Jeans Week Fundraiser – Nominate Your Favorite Charity Steve Torretta RAISED $540 Girls Soccer Fundraiser Arrowhead High School Girls Soccer Team RAISED $2,527.50 Scramble Fore MS Golf Outing Deb Knudson RAISED $6,035 Heim Wedding Kiss for a Cause Arron Heim RAISED $524 Pizzeria Piccola Fundraiser (Wauwatosa) Stephen Hudson-Mairet RAISED $1,429


Year in Review

Make a Difference Monday at Quaker Steak and Lube (New Berlin) Joanne Hill and Maggie Sonneman RAISED $284

DIY Success Story Sarah and Milton Hwang welcomed friends and family to “Fighting MS…Eggroll Style” at the couple’s home. The event included an authentic Chinese dinner and the opportunity to win a private Chinese cooking party for six. They raised $6,492.

Lemonade Sale Patrick Lennartz RAISED $150

JULY Blue Ribbon Beer Run Car Show Wisco Maniacs RAISED $5,000 60 for 60 Kassie McManus RAISED $1,555 La Chimenea (Saukville) Kristi Braun RAISED $235.29 Rummage Sale David and Ann Freigang RAISED $1,244.45 Beer for a Cure Lindsay Hale RAISED $1,485 Spin-a-thon in Memory of Walter Hermanns Laura Hermanns RAISED $200 25th Annual Croal Open Dan, Mike and Tim Croal RAISED $50,010 Community Garage Sale Teagen Johnson RAISED $464.55

Retro Wood Racket Tennis Tournament Kalla Schaefer RAISED $590 8th Annual Fighting MS Golf Event Freeman and Pagel Families RAISED $10,500 Annual Minocqua Antique and Classic Wooden Boat Show Pete Ekstrom, Al Hanley and Gordon Moore RAISED $11,402.22 Pedal and Party in Pardeeville with a Purpose Harry and Kay Lum Raised $6,930 Bob-O-Classic Golf Outing Shawn and Bryan Neddo Raised $1,250 1st Annual Hipster 5K and MS Fundraiser Jessica Kramer Raised $3,100

Horseshoe Tournament Paula Trieglaff RAISED $3,165 Greater Duck Creek Open Judy Buchta RAISED $250 Rookies Sport Bar & Grill 6th Annual Golf Outing Pat and Lisa Haak RAISED $3,349 Joy for Jeans Laurie Halzel RAISED $470

AUGUST The 12th Annual A Drive for MS – Bogey Bare MS Scramble Ken Bare RAISED $6,696.18 Jack Murphy Memorial Golf Outing Meta Hartman RAISED $3,002

MS Connection | 19


Year in Review

MS Golf Outing Becky Blauert RAISED $2,061.48 2nd Annual Perry-Vick Bowling Tournament Kevin Vick Raised $1,950 MS Cookout Linda Simonis RAISED $522.71 14th Annual Pat’s Par-Tee Pat Klotz RAISED $1,780

Thirty-One Fundraiser in Honor of Richard Brocket Heidi Komorowski RAISED $50 Raffle and Photo Hut Hanna Meronk RAISED $1,690

SEPTEMBER Community First Bank Fundraiser Michelle Larson RAISED $62.86

Milton Mud Challenge Heidi Crull RAISED $23,616.52

Texas Roadhouse Benefit Night (Waukesha) Texas Roadhouse RAISED $639.05

8th Annual JMO: A Drive for MS The Erdmann and Lock Families RAISED $2,450

Adams County MS Golf for a Cure Marty and June Hillert RAISED $35,329.50

The Northwestern Bank Casual Day (Chippewa Falls) The Northwestern Bank RAISED $54 Woods and Water Paddle Races Heather Davidson RAISED $200 10th Annual Apple Holler Orchard Walk and Charity Fundraiser Dave Flannery and Sheri Gavin RAISED $12,145.91 Whyte Hirschboeck Dudek, S.C. Jeans Day Toni Dahms RAISED $875

MS Connection | 20

Metro Milwaukee Red Hat Picnic Jean Rehse RAISED $275

Biloba Brewing Fundraiser Biloba Brewing RAISED $156 Mukwonago High School Staff Charity Fun Run/Walk Bruce Lammers RAISED $430 Ride for Clyde Biking for Beulah – Third Time’s a Charm Dawn Janisch RAISED $3,020 Shaleigh’s 3rd MS Bike Ride Shaleigh Fitzpatrick RAISED $915 Golf MS Wendy McCarthy RAISED $3,780 Bootz Saloon & Grill’s 1st Annual Golf Outing Christopher (CJ) Kempken RAISED $4,126 Napa Car Care Fair Tom Menting RAISED $4,000

9th Annual Kenfest Gina Kowalik RAISED $3,400

Green for Jeans Dan Zuzanski RAISED $140

Dogleg Open a Golf Outing to Support MS Dylan Guendert RAISED $11,138

OCTOBER

Y Not II Annual MS Benefit Shaleigh Fitzpatrick RAISED $80 Flyboarding for MS Michael Mikkelson RAISED $766

Let’s Beat It James Rodin RAISED $615 Spaghetti Dinner Cindy Koffman


Year in Review

DIY Success Story Howard Herrild ran in honor of his wife, Kerri, during the Cellcom Green Bay Half Marathon. He was one of the first in Wisconsin to take advantage of the new Finish MS program, which gives endurance athletes a way to raise funds for MS while pursuing their personal fitness goals. He raised $215.

Putt 4 MS Jesse Juedes APAA Dodgeball for MS Nicole Rademacher 3rd Annual Thanksgiving Turkey Trot Denise Johnson RAISED $1,510 Mario Karts For MS – Finish MS Zach Haertl RAISED $465

DECEMBER Tie One On to Beat MS Apron Fundraiser Julie Concannon RAISED $3,200 CNA Insurance Fundraiser Kristina Talkowski RAISED $1,050 Orange Out Adams-Friendship High School Girls Volleyball Team RAISED $250 Walk for a Purpose Fred Brown RAISED $510 Women’s Charity Hockey Tournament Julie Balson RAISED $1,500 Spookwalk Wayne Newby RAISED $850

NOVEMBER Halloween Party for MS Debra Forbes RAISED $1,150

Associated Bank Casual for a Cause Day Christy Chervenka RAISED $485

Wine and Dine Annette Mikat RAISED $719.72

Coed Quads Volleyball Tournament Scott and Linda Wittman RAISED $3,600

Madison Marathon Phyl Erickson RAISED $325

Christmas Party Chris Dahlgren RAISED $380

Madison Half Marathon – Finish MS Rob Multerer RAISED $2,899.10

MHS Lock In – Staying the Night to End the Fight Marci Mitchell-Hallett RAISED $2,538.53

3rd Annual Perry-Vick Bowling Tournament Kevin Vick RAISED $1,975

Mindy Brice’s Birthday Dan Brice RAISED $620

MS Fundraiser at MillerCoors Kim Muszynski RAISED $6,459

Hippie Fest Hanna Meronk RAISED $2,280.94

MS Connection | 21


How We Move It Wisconsin Chapter News and Notes

Apply for MS Youth Camp

Applications are now being accepted for an MS Youth Camp for children (who have completed third grade up to age 18) who have a parent with MS, or who live in a household with a person who has MS. Children spend a week, June 15-20, 2015, at YMCA Camp Icaghowan in Amery, Wis., to have fun with others their age who are also impacted by MS. Volunteers are also needed. Volunteer opportunities are available for adults and teens who are 18 and have graduated from high school. For more information, visit wisMS.org or contact Krista Harding at 612-335-7937 or krista.harding@nmss.org. The last day to apply is April 30. Scholarships are available on a first come, first serve basis.

MS AWARENESS WEEK March 2-8 MS SUMMIT March 7 PUBLIC POLICY CONFERENCE March 9-11

Wisconsin 2015

DE PERE Sunday, April 19 EAU CLAIRE Saturday, April 25 LA CROSSE Saturday, April 25 MARSHFIELD Saturday, April 25 APPLETON Sunday, April 26 SHEBOYGAN Sunday, April 26 CEDARBURG Saturday, May 2 FOND DU LAC Saturday, May 2 MENOMONEE FALLS Saturday, May 2 WAUSAU Saturday, May 2 JANESVILLE Sunday, May 3 MILWAUKEE Sunday, May 3 MADISON Sunday, May 3 PLATTEVILLE Sunday, May 3 KENOSHA-RACINE Saturday, May 9 OCONOMOWOC Saturday, May 9 OSHKOSH Sunday, September 13 WAUKESHA Sunday, September 13 STEVENS POINT Saturday, September 19 RHINELANDER Sunday, September 20

MS WORLD DAY May 27 BIKE MS: TOYOTA BEST DAM BIKE TOUR August 1-2

CHALLENGE WALK MS September 18-20

Door County 2015

In the Winter 2014 issue of MS Connection, page 10, the caption for the Circle of Distinction Award should read: “Pictured left to right, Society President and CEO Cyndi Zagieboylo, Robyn Bscherer, Shelly Wilz, Mary Schmidt, Society Board of Trustees Chair Eli Rubenstein and Ann Clermont.”

MS Connection | 22


MS Specialty Clinics in Wisconsin

Quality MS care is offered at several clinics throughout Wisconsin. Additionally, some of these clinics have taken additional steps focusing on neurology, rehabilitation, mental health and/or comprehensive care specific to MS. Those clinics are named National Multiple Sclerosis Society Partners in MS Care*, including Centers for Comprehensive MS Care**.

Aurora Advanced Healthcare Milwaukee (Not currently accepting new patients) Aurora Marinette Menominee Clinic Marinette, 715-735-7421 Aurora Medical Group MS Clinic** Green Bay, 920-288-8020 Aurora Wilkinson Medical Clinic Summit, 262-434-5000 Center for Neurological Disorders Milwaukee, 414-769-4040 Columbia St. Mary’s MS Clinic* Milwaukee, 414-291-1771

Dean St. Mary’s MS Clinic** Madison, 608-260-3425 Gundersen Lutheran MS Clinic** La Crosse, 608-775-9000 Marshfield Clinic MS Clinic** Marshfield, 715-387-5350 Neuroscience Group Neenah, 920-725-9373 ProHealth Care MS Clinic** Waukesha, 262-928-8668 UW Hospital and Clinics MS Clinic** Madison, 608-262-0546

Telelearning Events

The National Multiple Sclerosis Society’s free telelearning series provides information and guidance on current matters essential to living one’s best life with MS. Upcoming topics include: • • • • •

ARCH 12: MS and Employment – Support to Help You Find Employment M MARCH 17 AND 19: Managing MS Bladder and Bowel Symptoms MARCH 26: MS and Employment – The Essential Guide to Flexible and Home-Based Jobs MAY 19 AND 21: Sex Ed for Grownups – Intimacy in MS JUNE 21 AND 23: Gender Differences in MS

Visit nationalMSsociety.org/telelearning or call 800-344-4867 to learn more. MS CONNECTION IS A QUARTERLY PUBLICATION OF THE NATIONAL MULTIPLE SCLEROSIS SOCIETYWISCONSIN CHAPTER.

Editor: Amanda Gasper Krueger Contributing Editor: Maureen Waslicki raphic Design and Production: G Joan Hartin and Amy Malo

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To comment or share a story idea, call 262-369-7173 or email amanda.gasper@nmss.org National MS Society-Wisconsin Chapter 1120 James Drive, Ste. A, Hartland, WI 53029 262-369-4400 | 800-242-3358

@

wisMS.org

TOLL FREE

Get Connected The National Multiple Sclerosis Society helps each person address the challenges of living with MS through a variety of resources and support options. For more information on topics such as being newly diagnosed, treatment options and employment issues, visit nationalMSsociety.org. Sign up to receive National MS Society emails at nationalMSsociety.org/signup.

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Join the MSconnection.org community, a place for people living with MS to learn, share and connect with others impacted by MS.

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Talk to an MS Navigator – experts in helping you find MS information and resources – by calling 800-3444867, Option 2, 7 a.m. to 6:30 p.m. CST Monday through Friday.

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MS Connection | 23


NON-PROFIT ORGANIZATION U.S. POSTAGE A Publication of the National Multiple Sclerosis Society-Wisconsin Chapter

PAID

MADISON, WI PERMIT NO. 1252

1120 James Drive Suite A Hartland, WI 53029 www.wisMS.org Toll Free 1-800-242-3358 262-369-4400

®

BE INSPIRED. GET CONNECTED. WALK MS. Diagnosed with MS? Inspire others. Designate on your Walk MS registration form that you have MS and you’ll receive a free “I Walk with MS” or “I Roll with MS” T-shirt at the event. Wear it and show others with MS that they’re not alone.

REGISTER TODAY AND START FUNDRAISING. Visit walkMS.org, call 855-372-1331 or look inside for dates, locations and details.


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