SUMMER 2015 | National Multiple Sclerosis Society-Wisconsin Chapter
Join the Movement More and more people in Wisconsin are joining the MS movement. In fact, more than 11,000 people participated in Walk MS events throughout the state this spring … that’s 1,000 more than last year, and we still have a lot of activities yet to come!
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
• T he first weekend in August brings Bike MS: TOYOTA Best Dam Bike Tour – or what many call “the best two days on a bike.” • Next up are four more Walk MS events. • A nd to top it all off, there is Challenge Walk MS – a three-day, 50-mile walk through Door County. Each event generates awareness and donations and moves us that much closer to a world free of MS. Even more important – and as our experienced participants will tell you – is the camaraderie from others who share your passion. Of course, you can also create your own fundraiser. From hosting a rummage sale or lemonade stand and donating proceeds to the Society … to enlisting your local grocer to sell pin-ups to customers … there is no limit to the creative ways you can fundraise for this cause. In this issue of MS Connection, you’ll read about several inspiring individuals who are putting their summer fundraising plans into place and working to support research, programs and services. I hope they motivate you to join the movement … and move us even closer to a world free of MS. 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.
Taking a Bite Out of MS Orchard fundraiser is brother’s way of helping those with MS
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swallowing. That difficulty was a contributing factor when she passed away at the age of 48.
The owner of Apple Holler Family Farm and Restaurant in Sturtevant, Wis., has three very
Another sister, Jan, was also diagnosed. She had vision problems as a child, which is what her MS affected the most as an adult. She was blind in one eye, and also experienced severe temperature sensitivity. Jan passed away when she was 61.
f an apple a day can keep the doctor away, then Dave Flannery is hoping his annual apple orchard walk can do the same where multiple sclerosis is concerned.
The third sister, Sheila, has been affected the most through her mobility. She had polio as a child, and today her MS affects her walking. She falls a lot, relies on a cane or a walker and sometimes uses a wheelchair. Though she struggles with her MS every day, Sheila keeps an optimistic spirit.
For just $20 per person, Apple Holler MS Orchard Walk & Fundraiser participants of all ages can kick off the apple picking season and enjoy a number of amenities as part of the family-friendly event.
“None of them felt sorry for themselves. They learned to live with it,” Flannery said, admiration for his little sisters in his voice. “I told Shelia recently, ‘You’re a tough nut. I can’t imagine living with this disease day in and day out.’” Continued on Page 4
personal reasons to hold out that hope: his sisters Sheila, Peggy and Jan. Each was diagnosed with MS. Only one is alive today. “I almost feel guilty that it affected them and not the boys in the family,” Flannery said. “You have a feeling that it just isn’t fair.”
The Family Tree
All eight of the Flannery children – five girls and three boys – grew up in the KenoshaRacine area. Their grandpa owned a farm. “We did crazy things kids do on a farm, like getting on young cows and pretending to be in a rodeo,” Flannery, the oldest of the siblings, recalled. The first MS diagnosis came in the 1980s. It was Peggy. She was just 18. Flannery remembered that MS affected her balance and she had trouble
The annual orchard walk at Apple Holler was started to raise money to support researchers while funding resources for those with MS.
Tickets to the 11th Annual Apple Holler MS Orchard Walk & Fundraiser are available online at appleholler.com, by phone at 262-884-7100 or at the Apple Holler Restaurant, 5006 S. Sylvania Ave. in Sturtevant. For only $20 per person, you’ll receive: • Bag of apples • T-shirt (for those registered by August 10) • Raffle ticket (extra tickets can be purchased) • Apple-pancake breakfast • A family-friendly morning in one of Wisconsin’s most popular apple orchards August 29, 2015 Proceeds benefit the National MS Society.
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Still, Flannery can’t help but wonder: “Why would this terrible disease affect so many in our family?”
Branching Out for Answers
As a caring brother, Flannery reached out to the National Multiple Sclerosis Society to learn more. He found that while researchers had some ideas on the role genetics may play in developing MS (see sidebar), there weren’t yet any hard and fast answers. It was just one of the many pieces to solving the MS puzzle, he learned, but that researchers were starting to make definitive progress in a number of areas.
Early Bird Registration – Register by August 1 and be entered in a drawing for a Fall Hayride and Campfire package.
gift shop, goats eager to be fed, pumpkins, a corn maze and apples – lots and lots of apples … 30 varieties to be exact. “There’s nothing that tastes as good as an apple fresh off the tree,” said Flannery, who bought the restaurant in 1987, then bought more land in the 1990s and started planting 1,000 apple trees a year. Today he has 30,000 fruit trees on 73 acres, including peaches and pears.
“ In this high-tech society, it’s a low-tech activity that kids of all ages can enjoy.”
–D ave Flannery
That’s when Flannery realized there was something he and his family could do that would have an impact. They could raise money to support the researchers while also funding resources that help people living with a diagnosis. And Flannery knew the perfect place for fundraising – his apple orchard and restaurant. Those traveling on Interstate 94 between Kenosha and Racine have undoubtedly seen Apple Holler along the highway. The line of cars down the frontage road each autumn point to a family favorite with a popular restaurant and MS Connection | 4
The Flannery family circa 1990. Back row (l-r) brothers Dave, Roger and Mark. Middle row (l-r) sisters Peggy, Laura, Jodie, Jan and Sheila. Front row center, mother Jean Flannery.
The Fruit of Their Success
It’s the apples that are the most popular, and that’s where the annual Apple Holler MS Orchard Walk & Fundraiser comes in. For a $20-per-person donation, attendees enjoy a onemile walk through the orchard, a bag of apples (which they can pick themselves during
the walk), T-shirt, raffle ticket and an applepancake breakfast. A tractor-drawn wagon ride through the orchard is available for those who prefer not to walk or are unable to. “In this high-tech society, it’s a low-tech activity that kids of all ages can enjoy,” Flannery explained. Started in 2004, the annual fundraiser attracts hundreds of attendees each year and dozens of local sponsors. It has raised more than $85,000 to date for the National MS Society and generated significant awareness. In fact, it has been through organizing and hosting the event that Flannery and the Apple Holler staff have come to realize just how many people have a connection to MS. “It seems like everyone knows someone or has family who has MS,” said Sheri Gavin, fundraising coordinator for Apple Holler.
Tickets are now available for the 11th annual orchard walk, which has raised more than $85,000 to date. Those who register before August 10 receive a T-shirt in addition to a bag of apples, raffle ticket and breakfast.
“It’s more common than I would have suspected,” Flannery said.
“I didn’t have any kind of grand plan when we started the event,” Flannery said. “I figured it’s the least we could do.
Now in its 11th year, the 2015 MS Orchard Walk & Fundraiser will be held on Saturday, August 29. Advanced tickets are available. Breakfast is served from 7-11 a.m., and the walk begins with an official ribbon cutting at 9 a.m. The event wraps up before noon.
“It has to be such a scary thing when you first hear the words ‘You have MS.’ If we can help fund a resource, even if it’s someone to call for information, it’s a good feeling,” he added. “And in some small way we’re also contributing to a cure. I think that’s everyone’s hope, isn’t it?” n
The Genetics of MS. While MS is not hereditary, having a first-degree relative such as a parent or sibling with MS does increase an individual’s risk of developing the disease. Studies have shown that there is a higher prevalence of certain genes in populations with higher rates of MS. Common genetic factors have also been found in some families where there is more than one person with MS. Some researchers theorize that MS develops because a person is born with a genetic predisposition to react to some environmental agent that, upon exposure, triggers an immune-mediated response. Sophisticated new techniques have already identified more than 150 such genes and are helping to further answer questions about the role of genetics in the development of MS. Finding these answers will provide key information regarding the cause of the disease and how to prevent it; for developing new therapies based on genes that are associated with MS; and identifying those people who have a strong genetic predisposition to the disease to intervene at its earliest stages or prevent MS. For details, visit nationalMSsociety.org/Research/Research-We-Fund/Ending-the-Disease-Forever/ Searching-for-MS-Genes.
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Wellness and MS Helping people with MS live their best lives
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ast November, the National Multiple Sclerosis Society gathered a group of people with MS, healthcare professionals and researchers to discuss wellness in people with MS. “Wellness in its simplest form is the ability to live life to one’s fullest potential,” said Alexander Ng, Ph.D., a Marquette University professor and MS researcher who took part in the meeting. “It was inspiring to be in the same room with a bunch of very smart people who have the common goal of helping people with MS live their best lives.”
“ Wellness in its simplest form is the ability to live life to one’s fullest potential.”
–D r. Alexander Ng
The group was tasked with the following: review the current knowledge in the areas of diet, exercise and emotional wellness; identify gaps in knowledge; and suggest educational resources and support programs for people living with MS. “Diet and exercise or physical activity are components of physical wellness, which together with emotional wellness contribute to overall wellness,” Dr. Ng explained. Their findings were recently released in a paper entitled, “Wellness for People with MS: What do we know about Diet, Exercise and Mood and what do we still need to learn?” Some research highlights from the paper include:
Diet
Some studies have suggested that obesity, sodium intake and low levels of vitamin D may be contributing factors in an increased risk of MS or progression of MS.
Exercise
Exercise is good for a person’s overall health. In MS, research has also shown that exercise training is effective for improving aerobic capacity and muscle strength, mobility, quality of life and symptoms of fatigue and depression. MS Connection | 6
Dr. Alexander Ng, an associate professor in the Exercise Science Program at Marquette University, contributed his expertise to a meeting on wellness in MS.
Emotional Wellness
There are a variety of strategies to maintain or enhance emotional well-being. Research suggests that techniques and programs – including exercise, telephone-delivered physical activity counseling, acupuncture and meditation – have an impact on depression and stress.
Next Steps
Based on recommendations from the November meeting, the Society is establishing a work group this summer to address depression in MS; designing a strategy to educate healthcare professionals about the role of wellness in comprehensive MS care; and creating an MS Wellness Research network to develop study criteria for wellness-focused research. “My wish is that the work that produced this paper does not stop with this first step but continues so that definitive guidelines, strategies and resources to facilitate wellness can be produced or identified,” Dr. Ng said. To read the full paper from the wellness meeting, visit nationalMSsociety.org/Living-Well-With-MS/ Health-Wellness and click on “Learn more about the Society’s work on wellness and multiple sclerosis.” n
In true team spirit, MuckFest MS team Mudskippers leap through an obstacle course together.
Getting Dirty for a Cause Wisconsin woman leads in and out of the mud for MuckFest MS
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fter receiving a diagnosis of multiple sclerosis at the age of 37, Erin Dorn “needed to find a positive in the situation.”
Erin Dorn, shown with her husband Greg, is a 2014 MuckFest MS top fundraiser.
they could complete, encourage one another, make new friends and feel the pride that comes from conquering an individual challenge.”
What she found was kind of mucky – a fun mud and obstacle 5K run experience known as MuckFest MS. Dorn said, “MuckFest MS was exciting to me because it was active, involved a team and also pushed me outside of my comfort zone.”
And they did more. They raised funds and awareness for multiple sclerosis. In fact, Dorn was the top fundraiser for MuckFest MS Chicago in 2014, raising more than $35,000.
Dorn, who lives in Cross Plains with her husband and two children, invited family and friends to join her for last year’s event in the Chicago area. At nine members strong, they formed a team and titled it Mudskippers.
“ I needed to find a positive in the situation. “
“Everyone came out of the course a little better than when they started,” she said. “It is such a positive experience to witness people challenge themselves, complete obstacles they never thought
“We cannot usually control the muck that life throws our way,” said Dorn, whose more significant symptoms of MS are tingling and partial numbness in her legs from time to time. “We can only control how we choose to respond.”
– Erin Dorn
Dorn responds with a positive attitude. And while she acknowledges that sometimes it is easier said than done to stay positive, she added, “If we spend all of our time on the ‘what ifs,’ we miss the precious things today has to offer.” This year, Dorn and the rest of the Mudskippers are back for more with 32 people already signed up and a team fundraising goal of $50,000. Her Continued on Page 8
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advice to her new teammates? “Have fun, enjoy the experience and don’t take yourself too seriously. Oh, and duct tape your shoes to your feet! “The obstacles in MuckFest MS may not be anywhere near the real life obstacles we face, but something about finishing the race makes you feel a little more confident in your ability to overcome the next real life obstacle.” n
The Mudskippers get dirty for a good reason – to support people living with multiple sclerosis.
MuckFest MS Chicago is Saturday, August 29 in Grayslake, Illinois. Learn more at muckfestMS.com.
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. • $ 2,400 Jeffrey M. & Jody E. Steren Donor Advised Fund of the Jewish Community Foundation • $1,000 Clearly-Kumm Foundation, Inc. • $1,000 Krause Family Foundation • $1,000 West Bend Mutual Insurance Company Charitable Fund
• $ 500 Wisconsin Methodist Foundation, Inc. • $100 Hittle Family Charitable Fund, a Donor Advised Fund of Fidelity Charitable • $100 Piper Jaffray Foundation • $50 John & Julie Franz Paperboat Fund, a Donor Advised Fund of Fidelity Charitable
In total, $6,150 was received in gifts and grants from January through March. 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.
Erin Dorn, the 2014 top fundraiser of MuckFest MS Chicago, has a few tips for raising funds and awareness for MS. • Talk to people. “Tell your story and don’t be afraid to be a little vulnerable. It is amazing the good that people will show, even from those you might least expect.” • Ask for support, not just money. “If giving monetary support isn’t an option for them, I ask for support by sharing facts about MS and by asking them to share the team site and story with their network. The greater the number of people who hear the story, the greater chance of donations and the greater awareness of the disease.” • Do what you’re good at. “Use your interests and talents to raise money.” For example, one of her team members is a professional photographer, so he set up a booth at a company event and offered professional headshots with proceeds going to MuckFest MS. • Let donors know they are making a difference. “Make sure people know that every dollar counts. Everyone wants to know they are making a difference and are a part of something special.” Dorn plans to have a big poster at the event featuring her donors’ names. MS Connection | 8
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The event will challenge you. The experience will change you.
Accomplish something amazing this fall at Challenge Walk MS in Door County. Walk 50 miles. Raise $1,500. Change the way you see yourself and those around you. ALL INCLUDED:
• Meals • Lodging • Evening programs • Route support
Online training tips and fundraising tools will get you prepped. Rest stops every three miles, massage therapists at the resort and support along the route will make sure you succeed. Join the journey to a single destination: a world free of MS. Call 262-369-4400 or go to challengewalkMSwi.org to get started.
September 18-20, 2015 Register today!
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How We Move It Wisconsin Chapter News and Notes Bucky’s Beard Shaving
Stephanie Richardson, left, and Anne Brouwer advocated for MS in Washington, D.C., in March.
Public Policy Conference The 2015 National MS Society Public Policy Conference was held in Washington, D.C.,
in March, taking a sea of orange to Capitol Hill to ask for support of four important pieces of legislation: $32 billion in funding for the National Institutes of Health to support MS research; $10 million in Congressionally Directed Medical Research Programs to support MS research; the creation of a centralized data system for neurological diseases including MS; and updating Medicare regulations to include technically advanced mobility systems. Anne Brouwer, chair of the Wisconsin Chapter’s Government Relations Committee (GRC), and GRC member Stephanie Richardson attended the conference and met with staff from seven of Wisconsin’s eight congressional offices and both senate offices to ask for support of these important issues. Learn more at nationalMSsociety.org/Get-Involved/ Advocate-for-Change.
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It was a big hairy fundraiser on March 17 when Bucky’s Lakeside Pub & Grill on Okauchee Lake held a St. Paddy’s Day Beard Shaving. Bucky’s staff collected donations from customers to shave Josh Hornburg – who was known among the pub’s patrons and around Okauchee for his crazy beard. Nearly $175 was collected, and Josh (shown at right in both photos) had the lengthy chin whiskers shorn to the cheers of onlookers. The funds were then donated to the National MS SocietyWisconsin Chapter. Special Josh Hornburg’s beard thanks to Kayc Kleinhenz for shaving raised nearly identifying the fundraising $175 for MS. opportunity.
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: • July 21 (6 p.m.) and 23 (9 p.m.)* Gender Differences in MS • September 15 (6 p.m.) and 17 (9 p.m.) Preparing for MS Doctor Visits Visit nationalMSsociety.org/telelearning or call 800-344-4867 to learn more. * T he Spring 2015 issue of MS Connection incorrectly listed these dates as June. Please note the telelearning will be in July.
Inspired. Connected. Walk MS. Spring walks rally loved ones and those with MS
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hey stood in awe of a giant shopping cart in De Pere, posed with Bucky Badger in Madison and busted out the sunglasses in Fond du Lac. From Milwaukee to Eau Claire, Cedarburg to Platteville, and at the other 12 locations in between, thousands rallied for the MS movement and everyone affected by the disease. More than $1 million has been raised so far – putting Wisconsin within reach of this year’s $1.5 million goal. You can still donate to any of the 16 spring walks through September 25. Better still, sign up for one of the four remaining walks – Oshkosh, Stevens Point, Rhinelander and Waukesha – coming this fall. Volunteers are needed too! n
Visit walkMS.org to donate or register.
Walk MS 2015 again paid tribute to those who inspire us: the children, women and men who have been diagnosed and are walking, or rolling, with MS.
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Team Effort Family and friends rally around Bike MS team member
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om Magnus has participated in Bike MS: TOYOTA Best Dam Bike Tour for 14 years. Most of the early years the team was small in number, but mighty in spirit, as he only rode with best friend Bob. Later on his kids joined in the fun. They rallied around his wife, Eddy, who was diagnosed with multiple sclerosis in 1989. Eddy also rides in the Tour. But in 2014, the team, called “‘Fast Eddy’ We don’t tread lightly,” more than doubled in size to 18 members. The reason? To rally around Eddy after her breast cancer diagnosis and continuing battle with MS. “It was their inspiration to join,” Tom said. Family and friends saw how hard Eddy was working to get her strength back after going through surgery and treatment, including working out at a bootcamp in Hartland. His daughter, Kelly, decided the team needed
to start recruiting and fundraising earlier than usual, around ten months before the Tour. Their recruiting was a success. Kelly’s sorority sisters and friends joined the team and made a huge impact on donations. Their son Nick went out and bought a bike, along with bringing in some new riders. Tom’s brother rode, along with some local friends and old high school buddies. A friend’s son rode with them as well. Eddy said,
“ As our team grows with many friends, I realize they are there to support MS, Tom, me and my children, too.”
– Eddy Magnus
“As our team grows with many friends, I realize they are there to support MS, Tom, me and my children, too.” According to Tom, the new members brought great energy, along with a lot of fun and laughter. They truly bonded together and created a great team atmosphere. He shared, “One of our team members would actually push Eddy up the hill as they were both riding.”
Bike MS: TOYOTA Best Dam Bike Tour team “‘Fast Eddy’ We don’t tread lightly” more than doubled in size for the 2014 event, including 10 rookie riders. Tom and Eddy Magnus pictured at right. MS Connection | 12
“There are many great moments throughout the weekend,” Eddy added. “Lots of laughs, sweat, aching muscles, etc. But the best is always seeing all ages, shapes and sizes riding their bikes for two days because they care about raising money to cure MS. It is truly inspiring.” The team’s recruitment success extended to their fundraising. “People experience the Tour for the first time and good things happen,” Tom said, speaking of the 10 rookie riders on the team in 2014. The team raised
“When we finished, my wife rode in first, then I put our two kids behind her and we all lined up to make a big ‘flying V’ with all our teammates finishing together. We were cheering and singing.
“ Eddy hadn’t ridden in a few years and her riding on her own was very inspirational.”
– Tom Magnus
And when we were done, everyone was crying and giving Eddy a hug. It was tremendous! It was very emotional for our family and friends to enjoy this special moment together after the last ten months of hard work.” He continued, “Eddy hadn’t ridden in a few years and her riding on her own was very inspirational.” Having fun along the Best Dam Bike Tour route, team members stopped to take a photo in the cornfield.
more than $34,600 for MS research, programs and services, bringing the total raised in the history of the team to about $200,000 with this year’s donations. And at the 2014 Best Dam Bike Tour, they created a moment that Tom said was his favorite memory of the year.
The team is getting ready for this year’s Bike MS: TOYOTA Best Dam Bike Tour, slated for August 1-2. They already have more members than last year. “The support I have received from day one from my husband has been amazing and unwavering, and he has installed that attitude into the kids, as well,” Eddy said. “The past two years they all have been working really hard to get our Bike MS team to grow in members as well as the amount of dollars we are raising.” n
Check It Off Your Bucket List Participants say Bike MS: TOYOTA Best Dam Bike Tour is the “best two days on a bike” and that it “should be on everyone’s bucket list.” Taking place this year on August 1-2, this fully supported ride features: • 50-, 75- or 100-mile route options per day as cyclists travel from the Milwaukee area to Whitewater to Madison. (A one-day ride option is available too.) • Meals and overnight lodging at UW-Whitewater. • Mechanical and medical support along the route. • Finish line celebrations Saturday and Sunday. • Free T-shirt and opportunity to earn the 2015 commemorative jersey. • I Ride with MS program celebrating cyclists diagnosed with multiple sclerosis. Every mile you pedal and every dollar you raise makes a difference to people living with multiple sclerosis. Visit bestdambiketour.org or call 855-372-1331 to register. First-time participants can register for free – ask about the Ticket to Ride!
Participants who raise $1,000 or more receive a fundraising jersey.
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Bike MS: TOYOTA Best Each cyclist who participates in Bike MS: TOYOTA Best Dam Bike Tour has a personal reason why they ride. Here a few participants share their Best Dam Bike Tour story. Join them at the Best Dam Bike Tour, August 1-2.
Chris Wegner
(pictured on the left)
Team: Peppy Pedalers
YEARS RIDING: 1
“I ride because I want others to understand that having MS is not a ‘you can’t do anything anymore’ verdict. I have become more physically active since my diagnosis nine years ago. Working out with a group of fellow people living with MS has allowed me to try new things and push myself farther than I ever imagined! The funds raised are being used for research to wipe out MS, to help treat those of us with MS and more. How amazing is that?”
First Best Dam Bike Tour Experience: “Last year I was overwhelmed by the number of folks that participated in the ride. Riders were giving me such encouragement for riding with MS. I can’t wait for the ride this year and am already doing training rides weekly with teammates.”
tom griffith
Team captain: Karen’s Chain Gang “I ride in honor of my wife. She has had MS since February 1989. She is my hero and has handled MS like a champion. I will do this until we find a cure or I am no longer on this earth.”
YEARS RIDING: 3
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Advice to New Best Dam Bike Tour Participants: “Determine what you want to do in this adventure. Is it fitness? Is it to honor someone close to you? Is it pushing yourself physically? Is it to raise money for a cure? Or is it all these things? Then go after it like no one will say no to you. Because there is a world of people out there who want to help.”
Dam Bike Tour christin harding
Team CO-captain: Sonic Streamers “I ride because I can. Someday I probably won’t be able to and I want to make sure I squeeze every last bit of fun out of riding while I can.” Why You Should Ride: “The Wisconsin ride is the absolute best. I’ve never experienced such phenomenal support, the route is beautiful and the food is great. There is something inspiring and uplifting in riding alongside 1,400 other bikers, all there to support a cure for MS. I can’t imagine not being a part of this incredible experience. We’d sure love for you to join us!”
YEARS RIDING: 14
“I Ride with MS” is a special program that celebrates Bike MS: TOYOTA Best Dam Bike Tour cyclists living with MS. Enjoy special recognition at the ride and receive an “I Ride with MS” jersey and T-shirt. Just designate that you have MS when you register.
bestdambiketour.org | 855-372-1331 MS Connection | 15
Individualized Care Dr. Eric Maas emphasizes education and living one’s best life
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ne of the centerpieces of my practice is to treat each individual as such – an individual with their own unique circumstance,” said Eric Maas, M.D., a neurologist at Aurora Advanced Healthcare in the Milwaukee area. Dr. Maas graduated from the Medical College of Wisconsin in 1985 and completed his neurology residency at Case Western Reserve University in Cleveland in 1989. He completed a neuroophthalmology fellowship after his residency, which is where he developed an increased interest in multiple sclerosis. Neuro-ophthalmology deals with neurological diseases that impact vision. “We saw a lot of patients with MS,” Dr. Maas explained. Vision problems can be the first MS symptom for many people. That interest in helping people with MS stayed after he finished his fellowship. Now, more than half of his patients are diagnosed with MS. “The spectrum of how MS impacts any one person is broad,” he said. “We do the best we can to allow that person to live their life as best as they can.” Dr. Maas is also a member of the Clinical Advisory Committee (CAC) at the National
Multiple Sclerosis Society-Wisconsin Chapter, which advises the Chapter on clinical, research and medical matters.
“ There are a tremendous amount of talented researchers involved in MS research“
– Dr. Eric Mass “We can help guide the Society with our expertise as neurologists and healthcare providers,” he explained. Dr. Maas is especially interested in education and support for clinics, physicians and patients. He is also excited about MS research. “There are a tremendous amount of talented researchers involved in MS research,” he said. “Advances are being made from basic science to clinical work.” And as advances are being made, especially with new therapies on the market, the treatment landscape of MS has become more complicated. Dr. Maas said, “Along with newer medicines coming out comes a new responsibility to educate both patients and healthcare providers.” Dr. Maas noted that most of his patients keep themselves educated on their disease and ask very sophisticated questions. And with the pace of MS research, he said, “We almost always have something new to talk about. We need to take the time to make sure we are making well-considered choices supported by well-done clinical research.” n Pictured left to right, Drs. Eric Maas, Natasha Frost and Michael Connor, took part in a panel discussion at the MS Summit along with Dr. Stanya Smith (not pictured). Dr. Maas said of the event: “It was great to get together with colleagues who have the same dedication to helping patients with MS. I was also able to connect with patients and their family outside of the clinical setting.”
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Class of 2015 Scholarship Recipients
Multiple sclerosis shouldn’t stand in the way of a college education. The National Multiple Sclerosis Society Scholarship Program offers relief from some of the financial burdens experienced by families affected by MS. Applicants either have MS themselves or have a parent or guardian who has been diagnosed – and new this year, college students could apply in addition to high school seniors. Due to the expanded eligibility criteria, this year’s list of recipients includes moms, siblings and several past recipients.
Meet the 2015 scholarship recipients
Emily Tabers-Kwak Marshall Edgewood College
Emily TabersKwak was recognized for her high school performance with the Ladish Foundation Scholarship. She plans to attend Edgewood College where she will major in English with a library science specialty.
“There wasn’t a thing in the world that my dad and I couldn’t fix or invent. We always had some sort of contraption we were working on. I never had to stop and wonder if Dad would be physically able to do anything,” she wrote in her application. Of life since her father’s diagnosis, she said, “I know my family is strong and united in tackling MS together!”
Elexis Rox, recipient of the Dorothy Berghaus Croal Scholarship from the Wisconsin Chapter, is also being recognized as a 2015 National MS Society Top Scholar, a special designation bestowed on those who have shown exceptional performance. There were nine other Top Elexis Rox Scholars nationwide. La Crosse • Western Rox is attending Technical College Western Technical College where she is studying graphic design. “Not only has this scholarship allowed me to move forward in my life, but it also brings pride and honor to my family,” she wrote in her application. “My mother beams with joy after every successful semester I complete. My mom’s strength has really resonated with me and it makes me proud to be a part of the MS movement.”
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hy rot s Do ghau Ber roal hip C ars ol c S h
Cody Bryan Menomonie UW-Stout “MS has impacted everything about my life.”
Jenna Butts Neenah St. Norbert College “I have a burning passion to raise awareness of this disease in my community.”
Casey clark Shawano UW-Platteville “MS has strengthened my character, encouraged kindness and attentiveness, and for me to always try my best.”
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Andrew david Washburn UW-Madison “MS has created changes, but one thing that has remained is my view of Mom as an invincible figure.”
Molly de mars Ashland UW-Madison “MS has shaped who I am. I have learned a great deal about responsibility, patience and how to love life.”
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terra demien West Bend Coe College “Every day I wake up, and instead of just trying to make it through, I strive to make it the best day yet.”
stacy essert Merrill • Northcentral Technical College “I want to find a job helping children and families.”
ice r– Eun uhle ry B t n an Jea en P rship Op hola Sc
Taylor Falck De Pere UW-La Crosse “Seeing my mom go above and beyond is an inspiration to me. I hope that I can be as strong as she is.”
Samantha Giese Whitehall • Viterbo University “(As a nurse) I will return that favor to others as they struggle with the startling news of this disease affecting their loved ones.”
Weston Floerke Appleton UW-La Crosse “I know that I will persevere through any adversity that may present itself.”
Alexandria Groth Oconomowoc Marquette University “Even though I have no control over my dad’s disease, we are never alone in the fight against it.”
Caroline Groth Oconomowoc • Milwaukee School of Engineering “When a person can change another’s life for the better, they not only affect them, but the people around them as well.”
Emma Frohna Greenfield Carthage College “Multiple sclerosis has affected my life and my family, and I plan on affecting multiple sclerosis.”
The 2015 program awarded scholarships to 37 students in Wisconsin, the most awards given since 2008. There were 834 scholarships totaling more than $1.2 million awarded nationally.
katie haas Sobieski UW-Green Bay “I would like to give back to the community by working with the homeless and adults with disabilities.” MS Connection | 19
hy rot aus o D rgh l a Be Cro rship a l ho Sc
Samantha Hulke Appleton • Fox Valley Technical College “It’s hard seeing my mom struggle with things she used to do with ease, but she is the strongest woman I know.”
Emilia Janisch Verona Michigan State University “I started to realize that if MS had never affected my family, I never would have worked so hard to be successful.”
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Hayden Johnston Middleton Marquette University “No matter what your situation is, you need to keep your head up and keep moving forward.”
Danielle Kuhn Wausau UW-Milwaukee “What makes my mom my role model is not her constant love and support, but that she is a fighter.” MS Connection | 20
Amberlyn Kern Adell North Central University “People contain something so much deeper than what you can catch at first glance.”
Connor Larson Appleton • Concordia University Wisconsin “MS has had such a large effect on my family that it has driven me to want to become a physical therapist.”
McKenzie Larson Appleton UW-La Crosse “As an elementary education teacher, I have a goal to create an environment children want to attend every day.”
Katherine Machi West Allis University of Dayton “In my family, the power of genuine and deep love serves as a foundation of beating multiple sclerosis.”
Elizabeth Mcmillan Beloit Arizona State University “I want to help other people, because the only secure thing people have is other people.”
Jacob Niemuth Whitewater UW-Whitewater “My mom has shown me how to be strong through the toughest times.”
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Amanda Plachinski Kewaskum UW-Platteville “The disease is terrible, but it did not stop the people it affected, like Mom, from going out and doing amazing things.”
amanda miller Greenfield UW-Milwaukee “By connecting as humans, we can make our way through this crazy world together.”
Colton Persha Oconomowoc UW-Whitewater “Things can be good or bad, you just have to make the most of everything.” Rab Unlim bits ite Ltd. d, Schola rship
Chase Ploetz Sheboygan UW-Platteville “I will keep supporting my mother along the way in all ways possible.” MS Connection | 21
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Erin Putz Fountain City UW-River Falls “We depend on each other for strength when we don’t have enough of our own.”
Shannon Radl Neosho UW-Waukesha “I aspire to help others cope with unexpected life situations that arise.”
Ky Schmidt Shawano • University of Minnesota-Twin Cities “I am better equipped to deal with adversity and I have learned at a very early age how special time is.”
Timmeka Swoboda Milwaukee Alverno College “Most of all, my mom’s diagnoses of multiple sclerosis has taught me what true unconditional love is.” bits , Rabmited i Unl Ltd. ship r ola Sch
Becky Torrence Milwaukee Kaplan University “The impact MS has had on my life is really this simple: it has taken a lot from me, but it has also given me a lot.” MS Connection | 22
Murphy Turek Menasha St. Norbert College “I hope that I can get involved in some research regarding MS, knowing that there is so much more to discover.”
Lauren Zylka Germantown Viterbo University “I have always wanted to help people and I feel that nursing is my calling in life.”
For you or a loved one:
Let’s talk about living with relapsing MS Join us for 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. Tuesday, July 7, 2015 12:00 p.m. EXPERT SPEAKER Michael Connor, DO, MS Specialist Maggiano’s Little Italy 2500 North Mayfair Road, Wauwatosa, WI 53226
Event Code: TR293900 (1230508)
Wednesday, July 15, 2015 6:00 p.m. EXPERT SPEAKER Michael Connor, DO, MS Specialist Tuscany Bistro Bar & Grill 7410 118th Avenue, Kenosha, WI 53142
Event Code: TR293902 (1229193)
Wednesday, July 22, 2015 12:00 p.m. EXPERT SPEAKER Lisa Sershon, PA, Center for Neurological Disorders S.C., El Fuego Event Code: 909 West Layton Avenue, Milwaukee, WI 53221 TR293901 (1229404) 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.14.03.014 PAID ADVERTISEMENT
MS Connection | 23
For you or a loved one:
Let’s talk about living with relapsing MS Join us for 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. monday, July 27, 2015 12:00 p.m. EXPERT SPEAKER Bhupendra Khatri, MD, Center for Neurological Disorders North Star American Bistro Event Code: 19115 West Capitol Drive, Suite 100, Brookfield, WI 53045 TR294908 (1230693)
Wednesday, July 29, 2015 12:00 p.m. EXPERT SPEAKER Thomas Berentsen, MD, St. Mary’s Janesville The Waterfront Restaurant and Tavern 328 Front Street South, La Crosse, WI 54601
Event Code: TR293517 (1228993)
Wednesday, July 29, 2015 6:00 p.m. EXPERT SPEAKER Thomas Berentsen, MD, St. Mary’s Janesville Benvenuto’s Italian Grill 1621 Progressive Parkway, Platteville, WI 53818
Event Code: TR293522 (1228994)
Wednesday, August 5, 2015 6:00 p.m. EXPERT SPEAKER Thomas Berentsen, MD, St. Mary’s Janesville Giovanni’s 610 North Bell School Road, Rockford, IL
Event Code: TR293506 (1228992) PAID ADVERTISEMENT
MS Connection | 24
A Letter of Thanks Donor-supported financial assistance program gives freedom
To whom it may concern: I have wanted to return to work pa rt-time for some have been having time, but I difficulty safely ge tt in g in and out of my ho I needed half-ste ps installed in th me. e garage and a st air lift. Last year, I qual ified for a statefunded program to make the acce that would allow ssibility improvem me ents I needed. A completed all th ft er I su ccessfully e requirements and the improvem to be made, I was en ts w ere about bumped out of the program. Th in my 2015 disa e sl ig ht increase bility payments disqualified me! I was heartbroke n. I had made gr eat strides in MS was ready to mov treatment, and e back out into the world. Then out from under the rug was pulle me! I desperatel d y called my soci Center for Neuro al w or ke r at the logical Disorders and she sugges the MS Society. ted I contact The day you calle d to tell me the money I needed I literally choked was available, back tears. If I co ul d ha ve danced in the I would have! Yo streets, ur grant means fr ee do m. Freedom to w to get out and se ork. Freedom e friends. Freedo m to live a prod uctive life. I cannot thank yo u enough for yo ur generosity! A you for giving pe nd thank ople with MS the fr ee do m to pursue a productive life! Best regards, Jane H.
Jane sent this letter to the National Multiple Sclerosis Society-Wisconsin Chapter this spring to thank those who made the financial assistance she received possible. She is one of hundreds of people who have received life-changing financial assistance thanks to the generosity of Wisconsin Chapter donors. Some donors give directly to the chapter or through a fundraising event such as Bike MS or Walk MS; others donate anonymously through the state’s Tax Check-off Program. Visit wisMS.org and click on “Donate� to learn more. n
MS Connection | 25
Leading the Way Together Friends partner in volunteer efforts at Society events fter some changes in her personal life, including becoming an empty nester and being out of the workforce for a few years, Mary Perna, found herself wanting to get more involved with multiple sclerosis-related activities.
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who was diagnosed with MS in 2008, said, “It’s a good feeling to see all the people come in.”
What she found was Walk MS, joining the volunteer committee for Walk MS: De Pere.
“Basically we are all good teammates,” said Perna of the committee.
“When I joined the planning committee (in 2009), I found that the group was well established – a well-oiled machine,” said Perna, who was diagnosed with MS in 1996. “I had to find how I was going to fit in and add value to the group.” She distributed posters, put out yard signs and started a silent auction. Then in 2011, the other volunteer leaders of the committee asked Perna to take the chairperson position. She agreed, and
“ I had to find how I was going to fit in and add value to the group.“
–M ary Perna
invited her friend and fellow volunteer Debbie Bernarde to be her co-chair and, as she puts it, “partner in crime.” Perna coordinates a lot of logistics for the walk and leads the silent auction, while Bernarde takes charge of the check-in area for the walk. Bernarde,
Debbie Bernarde (right), who helps lead the Walk MS: De Pere volunteer committee, says her favorite part of running the check-in area is seeing the walkers arrive to enjoy the event. MS Connection | 26
This year’s Walk MS: De Pere, held in April, was Perna and Bernarde’s third time coNot only is Mary Perna co-chair of chairing the walk. the Walk MS: De Pere volunteer Perna said, “The committee, she’s also among the day for me was top 100 fundraisers in the state, inspirational and known as the Big Cheese Club. uplifting. As a person with MS, it is a wonderful feeling to see so many people supporting the cause. As a cochair for the walk, it makes me feel good that the committee is able to put on this beautiful event for the MS community.” “It’s rewarding to see everyone coming together,” Bernarde added. And while they both have faced challenges – Perna uses a scooter for mobility and two of Bernade’s four sisters have also been diagnosed with MS – they keep a positive attitude and use their time to volunteer, not just for Walk MS, but for other Society events as well. Past volunteer experiences include Challenge Walk MS where they hosted a rest stop and Bike MS: TOYOTA Best Dam Bike Tour where they helped distribute T-shirts and completer bags. “Volunteering is a win/win situation,” Perna said. “Volunteering makes me feel good and that I can make a difference. Volunteering for the Society’s events is rewarding and a great way to keep in touch with MS friends. It is also a good way to keep updated on research, drug therapies and daily life experiences.” “It gives you such a good feeling in your heart,” Bernarde said. “You should just do it!” n
Chapter Calendar of Upcoming Events
MS Specialty Clinics in Wisconsin
Quality MS care is offered at several clinics throughout Wisconsin. Some of these clinics have taken additional steps focusing on neurology, rehabilitation, mental health and/or comprehensive care specific to MS.(*) Centers for Comprehensive MS Care* Green Bay: La Crosse: Madison: Marshfield: Waukesha:
BIKE MS: TOYOTA BEST DAM BIKE TOUR
Aurora Medical Group MS Clinic 920-288-8020 Gundersen Lutheran MS Clinic 608-775-9000 Dean St. Mary’s MS Clinic 608-260-3425 UW Hospital and Clinics MS Clinic 608-262-0546 Marshfield Clinic MS Clinic 715-387-5350 ProHealth Care MS Clinic 262-928-8668
August 1-2
Door County
2015 CHALLENGE WALK MS
September 18-20
Partners in MS Care* Milwaukee: Columbia St. Mary’s MS Clinic 414-291-1771
CLINICS Milwaukee: Marinette: Neenah: Summit:
Aurora Advanced Healthcare (Not currently accepting new patients) Center for Neurological Disorders 414-769-4040 Aurora Marinette Menominee Clinic 715-735-7421 Neuroscience Group 920-725-9373 Aurora Wilkinson Medical Clinic 262-434-5000
MS Connection is a quarterly publication of the National Multiple Sclerosis SocietyWisconsin Chapter.
Editor: Amanda Gasper Krueger Contributing Editor: Maureen Waslicki Graphic Design and Production: 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 Dr., Ste. A, Hartland, WI 53029 262-369-4400 | 800-242-3358
@
Wisconsin 2015
Walk MS: Stevens Point
wisMS.org
TOLL FREE
September 19
Walk MS: OSHKOSH September 20
Walk MS: Rhinelander September 20
Walk MS: Waukesha September 20
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 800-344-4867, Option 2, 7 a.m. to 6:30 p.m. CST Monday through Friday.
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MS Connection | 27
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A Publication of the National Multiple Sclerosis Society-Wisconsin Chapter
1120 James Drive Suite A Hartland, WI 53029 www.wisMS.org Toll Free 1-800-242-3358 262-369-4400
®
You Didn’t Miss Walk MS! Four fall walks coming in September. Step it up in September and visit walkMS.org or call 855-372-1331 to register, form a team or volunteer.
NEW DATE
Stevens Point September 19
NEW DATE!
Oshkosh September 20
Rhinelander September 20
NEW DATE!
waukesha September 20
Want to take it a step further? Learn about Challenge Walk MS on page 9.