SUMMER 2016 | National Multiple Sclerosis Society-Wisconsin Chapter
Going the Distance
Bike MS: TOYOTA Best Dam Bike Tour
National Multiple Sclerosis SocietyWisconsin Chapter Board of Trustees Tom Golden, Chair M3 Insurance Solutions, Inc. Kenneth Minor, Vice Chair Sonic Foundry, Inc. James Rose, Vice Chair Baker Tilly Virchow Krause, LLP Michael Lutze, Treasurer Ernst & Young Robert Sowinski, Secretary Diversified Insurance Solutions David Rodgers, Past Chair Briggs & Stratton Corporation Colleen Kalt, President & CEO National MS SocietyWisconsin Chapter
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 Pamela Evason, Windermere Wealth Advisors, LLC Josh Hoesch First Business Bank Paul Jones Harley-Davidson, Inc. Fr. James Kaestner Retired Wayne Larsen Ladish Company Foundation Martin McLaughlin Reinhart Boerner Van Deuren, s.c.
Anne Brouwer Jeffrey Steren McMillianDoolittle, LLP Steren Management/ McDonald’s
Participants of the I Ride with MS program inspire other cyclists at the Bike MS: TOYOTA Best Dam Bike Tour.
Finding Inspiration Every day I’m surrounded by inspiring moments. A volunteer dedicating time and effort to the mission. A team crossing the finish line together at Walk MS. A young man raising money in honor of his mom (you’ll meet him in this issue). And I’m looking forward to more moments like these at this year’s Bike MS: TOYOTA Best Dam Bike Tour. Riders who are living with MS will inspire their fellow riders. Participants on tandem bikes will use teamwork to go that extra mile. And volunteers living with MS will sign rider bibs as cyclists cross that finish line in Madison. Each moment adds up. And each moment brings us that much closer to a world free of MS, as we raise awareness and funds for critical research and services. I hope you find inspiration from the individuals you will read about in this issue … inspiration to make your own mark on the MS Movement. With 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.
MS Connection | 2
The National MS Society is committed to creating a world free of MS.
Ten Years and Counting Bike MS: TOYOTA Best Dam Bike Tour Team Happy Feet reaches gold
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his year, Team Happy Feet is celebrating their 10th anniversary as a Bike MS: TOYOTA Best Dam Bike Tour team. And they’re closing in on raising more than $400,000 over that time. “When we first started the team, it struck me how many people have connections to multiple sclerosis,” said team captain Susan Grzeskowiak. “Everyone knows someone.” Susan’s own connection is a family member. “My mom’s cousin has MS,” explained Susan. “Sometimes she would be in a wheelchair when we saw her. Next time, she would be walking. As a kid, you don’t understand it.” Team members Kevin Jorgensen and his wife, Marianne, ride in memory of his father. This year’s ride is particularly poignant. Kevin will be 53 years old during the Tour, the same age his dad was when he passed away. “I never saw my dad ride a bike,” he said. His father had a progressive form of MS and was diagnosed in his early 20s. “He never complained
Susan Grzeskowiak (left), team captain of Team Happy Feet, with team members Kevin and Marianne Jorgensen.
about it. When people asked him how he was, he said, ‘Very good.’ That rubbed off on me. I am told I am a positive person.” The Jorgensens also ride for a good friend, who before announcing he had been diagnosed with MS, had donated to their fundraising efforts. Kevin said, “Like my dad, he acts like he has nothing holding him back.”
Continued on Page 4
Team Happy Feet raised more than $50,000 at the 2015 Bike MS: TOYOTA Best Dam Bike Tour. Bike MS: TOYOTA Best Dam Bike Tour is August 6-7. Learn more at bestdambiketour.org.
MS Connection | 3
Before Team Happy Feet hits the start line of the Bike MS: TOYOTA Best Dam Bike Tour, they share a team dinner the night before the ride. Continued from Page 3
Raising the Bar
Team Happy Feet is part of the Best Dam Bike Tour’s Spokes program. Spokes teams, with levels Gold, Silver and Bronze, commit to higher fundraising as a team and in return receive benefits such as a private tent in Team Village, special rooming assignments and other perks throughout the event weekend. Team Happy Feet is making the move from Silver to Gold in 2016, committing to raising $50,000. Kevin and Marianne are in the Top 10 fundraisers from the 2015 Best Dam Bike Tour, while five additional Team Happy Feet members are among the top 100. Those 100 are each affectionately called a Big Cheese. “When we hear about the progress we’ve made, it motivates you for the next year,” Marianne
A Ruff Rider Team Happy Feet has an honorary member: Vinny, a miniature poodle who will be 12 in July. Vinny was diagnosed with a neurological disease, so he sticks close to owner and Team Happy Feet member Joe Aliota. During the Best Dam Bike Tour, Vinny sits in a basket attached to Joe’s bike, enjoying the ride. “He promises to pedal one of these years,” Joe joked. “He’s a trooper.” Vinny has his own fundraising page! If you’d like to donate, visit nationalMSsociety.org/goto/VinnyAliota. MS Connection | 4
said, describing the research updates participants hear about at the event’s annual Saturday evening program. “I never thought I would be a Big Cheese! People thanked me on the route. It fuels me to do better.” Kevin added, “You don’t realize how generous your friends can be.”
Team Camaraderie
Susan’s team members praise her for her organizational skills and attention to safety, as well as the weekly team training rides she organizes. “She made me feel welcomed and comfortable,” team member Joe Aliota said. “She is protective of us and makes sure we follow the laws and learn how to ride in a group.” That team feeling continues throughout the weekend of Bike MS: TOYOTA Best Dam Bike Tour, starting with a team dinner the Friday before the ride where they welcome new members and catch up with the riders’ friends and family members diagnosed with MS. They also have a team dinner on Sunday night after the event. “It’s like a big party all weekend,” Susan said. “You don’t want it to end.” And while she acknowledges that the Best Dam Bike Tour might be intimidating at first, she said, “It’s heads and shoulders above rides as far as support. With the support you receive from the Society and other riders, you can do it!” Marianne agreed, “There is no other ride that supports us like this ride.” n
To End MS, We Walk MS Spring walks show there’s strength in numbers, more to come in fall
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e’re stronger together” was the theme at the MS fundraising walks that took place throughout the state in April and early May. Despite Mother Nature’s preference for blustery winds, cool temperatures and, in some locations, misty, gray mornings, the perseverance of those touched by MS was as resilient as ever. From La Crosse on April 23, to Fond du Lac, KenoshaRacine and Wausau on May 7, and at all 12 walk cities in between, thousands came out to rally, to walk and to raise funds that will help everyone affected by the disease. Wisconsin is on its way to reaching this year’s $1.5 million fundraising goal. Donations are being accepted through September 23, and four more walks – in Oshkosh, Stevens Point, Rhinelander and Waukesha – will be held in the fall. Go to walkMSwisconsin.org or call 855-372-1331 to donate or register. n
W E ’ R E ST R O
NGER
TOGETHER.
Walk MS participants came together in 16 Wisconsin communities this spring. Four more walks will be held in the fall.
. S M K L WA
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Challenge Accepted Walk MS participant ups the ante by joining Challenge Walk MS
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hree-time Walk MS participant Alicia Alsberg has decided that this is the year she’s up for a challenge. She’ll add 47 miles to her 3-mile Walk MS route and commit to raising more than $1,500 for Challenge Walk MS in Door County. The decision is in honor of her mom – the flirty, funny, outdoorsy Carol Horton, who was diagnosed with MS at age 21, rejected doctors’ advice against having more children, and passed away from complications of the disease two months before she would have become a grandmother.
“ I think quite often of my two little girls, Brooke and Anna. I’m focused on doing this for my mom, but they’re in the back of my head.”
– Alicia Alsberg
“We’d get laughing at the silliest things,” Alsberg recalled of her mom. “She loved hiking, boating, fishing. I struggled to see the effect of MS on her.”
That included using a wheelchair and needing caregiver assistance 12 hours a day. “I remember so clearly one afternoon when I was helping my mom in the bathroom. When I had her standing and went to pivot her back to her chair, she said to me, ‘Wait a minute.’ She gave Carol Horton lived with MS for 26 years. “She loved hiking, me such a warm boating, fishing,” her daughter hug and scratched described. my back a little,” Alsberg described. “Hugging from a wheelchair does not feel the same. That memory I hang on to.” After hearing about Challenge Walk MS from a co-worker, Alsberg, 36, said it sounded like something her mom would have loved to do side-by-side with her. And although she admits to being slightly concerned about the toll it may take on her self-described “bad feet,” she isn’t intimated by the idea of walking up to 50 miles in three days, raising at least $1,500 (her actual goal is to raise $10,750!) or even doing the walk by herself rather than with a team. “A lot of times, people think of those who have MS now and not the people who could be diagnosed,” Alsberg said. “I think quite often of my two little girls, Brooke and Anna. I’m focused on doing this for my mom, but they’re in the back of my head. My mom was a fighter, so strong. I need to be a fighter like her to help others fight, and my two little blond girls give me the encouragement I need to walk. I have to protect them!” n
Past Walk MS participant Alicia Alsberg (top right) has set her sights on Challenge Walk MS as a way of honoring her mom.
MS Connection | 6
Learn how Alsberg is reaching her $10,750 fundraising goal.
MS Summit Surpassed Expectations Learnings from free event focused on staying stronger together
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early 300 people capped off MS Awareness Week by attending the 2016 MS Summit in Pewaukee on March 12. There they met with service providers and pharmaceutical representatives; learned more about the resources provided by the National Multiple Sclerosis Society; and heard from leading experts in the fields of assistive technology, MS-related research and self-help techniques. n
MS Summit attendees received lunch, light refreshments and promotional giveaways from exhibitors as part of the free event, which took place in Pewaukee and capped off MS Awareness Week.
Christopher Luzzio, MD, and Haley Titus, PhD, each presented on their research.
Julie Bobholz, PhD, led the session, Everyday Matters: Living Your Best Life with MS. (See page 25 for details about September’s Everyday Matters program.)
National MS SocietyWisconsin Chapter president and CEO Colleen Kalt presented Jim Schutz with the Outstanding Service Award on behalf of Open Pantry, which was honored for its employees’ involvement in raising MS awareness and supporting Walk MS.
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Alicia’s Fundraising Plan Alicia Alsberg is already more than one-third of the way to reaching her $10,750 Challenge Walk MS fundraising goal. The Walk MS veteran is using tried-and-true fundraising techniques from Walk MS and taking advantage of online tools provided by the National MS Society to work toward her goal. Those techniques include: n Updating her online participant page at challengewalkMSwi.org, where she posted a picture of her mom and shared details of her mom’s experience with MS. n M aking a self-pledge and requesting a company donation from her employer. n Sending emails asking family and friends to donate. “I’m trying to send one a month to anyone I have an email address for.” n Getting her family’s help. Her husband folded, stuffed and mailed brochures that Alsberg created. Her dad took brochures and cupcakes to work, generating nearly $900 in donations. And in April, Alsberg baked shoe-shaped cookies with her daughters and walked the neighborhood to hand out the treats and generate donations. n Saying ‘Thank You.’ In addition to personally thanking each person who donates, Alsberg is inviting them to a celebration cook-out on what would have been her mom’s 60th birthday.
Alsberg’s daughters helped her canvas their family’s neighborhood with homemade shoe-shaped cookies to generate extra donations. MS Connection | 7
Scholarship Support for Three Siblings Benjamin, Emilie and Josh Roper succeed with Scholarship Program
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mong the many families that have benefited from the National Multiple Sclerosis Society’s Scholarship Program since its inception in 2003 are the Ropers. All three of the Roper siblings – Benjamin, Emilie and Josh – have received scholarships through the program: Benjamin and Emilie each received $1,500 scholarships in 2011, and little brother Josh received a four-year perpetual scholarship of $5,000 in 2013 when
award because he will be graduating early, completing his bachelor’s degree in mechanical engineering in just three and a half years. Josh, Emilie and Benjamin have been touched by MS their entire lives – their mom was diagnosed before they were born. She passed away in 2009 from complications of MS after spending six years in care facilities. Emilie and Ben were 16 when she died. Josh was 14.
“ The National MS Society’s scholarship program gave me financial relief, which allowed me to focus more on my academics ...”
– Josh Roper
In his scholarship application essay, Ben talked about the courage he developed as a result of his mom’s disease. Emilie remarked on the confidence and independence it brought out in her. Their father, Brian, saw their strength, and Josh’s, too.
Benjamin, Emilie and Josh Roper soon will all be UW-Platteville graduates thanks in part to National MS Society scholarships. The trio are annual Walk MS participants and helped lead a team of friends and students at the Platteville walk last year.
he was named a National MS Society Ladish Foundation scholarship recipient and one of the Society’s Top Scholars. Now the siblings are voicing their appreciation for those who made their scholarships possible. “The National MS Society’s scholarship program gave me financial relief, which allowed me to focus more on my academics rather than being clamped down by the idea of not being able to afford college,” said Josh, who did not submit his application to receive the fourth year of his MS Connection | 8
“While I solo-parented for nearly 10 years, they never, never, never gave up on their faith or their dreams,” he said. “The encouragement provided by family, friends and classmates helped light the way, and their scholarships from the National MS Society helped ease our family’s financial burden.”
“I would like to think that our mom is looking down on all three of us and beaming with pride because we could’ve just sat around and not done anything with our lives after she died because it was extremely difficult,” added Emilie, who graduated on May 7. “But all three of us have bounced back and will be college graduates, and we have the strength of our mom running in our veins.” n
Class of 2016 MEET THE 2016 SCHOLARSHIP RECIPIENTS
Multiple sclerosis shouldn’t stand in the way of a college education. The National Multiple Sclerosis Society’s scholarship program helps highly qualified students who have been diagnosed with MS or who have a parent with MS achieve their dreams of going to college. In the words of a past scholarship recipient, “The National MS Society scholarship has brought hope and relief to my family.”
RABBITS UNLIMITED, LTD. SCHOLARSHIP
CODY BRYA
N Menomonie • UW-Stout “I feel like this sch given me a ch olarship has ance to prove what I can do with a higher education.”
RABBITS UNLIMITED, LTD. SCHOLARSHIP
SUSANNE WOLFF
SCHOLARSHIP
CORRIANNE CAIN ANNA BUDELMAN Fond du Lac • Marian University “Experiences have taught me never to take anything for granted, always be aware and hard work pays off in the end.”
S
JENNA BUTT
bert College Neenah • St. Nor helping “I feel as though truly am others is what I made to do.”
Cedarburg Concordia University-Nebraska “The impact of MS has reminded me of the strength of community.”
MS Connection | 9
Class of 2016 SCHOLARSHIP RECIPIENTS MOLLY DE MARS Ashland • UW-Madison “I will have the opportunity to impact the world for the greater good.”
RACHEL DEHMLOW Arkdale • Drake University “My mom’s MS has taught me to chase my dreams and that I can do whatever I put my mind to.”
KATHRYN EBERT Mukwonago Milwaukee School of Engineering “I want to make a building that people go into and are suddenly uplifted. I want to make them more accessible.”
STACY ESSERT
Merril Northcentral Technical College “I hope to one day work with children and families to help people in situations like mine.”
DOROTHY BERGHAUS CROAL
SCHOLARSHIP
DEBORAH FISHER Milwaukee • UW-Madison “I learned from a young age to help others in need and to be self-aware of the effects of my actions on others.”
MS Connection | 10
WESTON FLOE
RKE
Appleton • UW-La Crosse “I am very proud of what I have accomplished in m y first year of college and I couldn ’t be more excited for what is yet to come.”
LADISH FOUNDATION
EUNICE JEAN BUHLER – OPEN PANTRY
SCHOLARSHIP
SCHOLARSHIP
MEREDITH GINGOLD Milwaukee • University of Minnesota-Twin Cities “I hope to use my public health knowledge to make the public more knowledgeable about MS.”
KATIE HAAS Sobieski • UW-Green Bay “I would like to work with the elderly who need assistance with getting aid.”
T. FERGUSON LOCKE
FATHER CHARLES BROOKS
SCHOLARSHIP
SCHOLARSHIP
RACHEL KRUEPKE
AMBERLYN KERN Adell North Central University “Wherever life takes me, I know that my greatest achievements will be found in hope.”
N LE KUH DANIEL Milwaukee l on • UW-
West re voca to be mo about d e n r a le “I e knowledg about my h my life-long g MS throu es.” experienc
DANIELLE KNUDTSON La Crosse • Purdue University “MS has taught me how to be independent, how to stand on my own and also how to be a helping hand for others.”
Jackson • UW-Madison “I have realized that the time we have with each other is limited and I need to cherish every moment I can share with my family.”
MADELYN MA
RTIN
Spooner Winona State U niversity “Since I have be en in college, I have worked ex tremely hard to try to be the best nurse I can be.”
Class of 2016 SCHOLARSHIP RECIPIENTS DIVERSIFIED INSURANCE SOLUTIONS LADISH FOUNDATION
SCHOLARSHIP
AARON MEYER Greenfield • UW-Milwaukee “I look to make positive advances in the technology world and to help all those I can live easier and simpler lives.”
SCHOLARSHIP
KEANA MAYER KAYLIE MARKS Wautoma • Ripon College “My mom is my hero. My mom has taught me so many things and given me her unconditional love and support.”
Lodi • Creighton University “Becoming a surgeon will allow me to constantly challenge myself and grow.”
T. FERGUSON LOCKE SCHOLARSHIP
ELIZABETH RAHMLOW Hartland University of North Dakota “It’s a difficult road we’re walking, but as long as we have one another, we’ll never have to walk it alone.”
ABIGALE NICHOLSO
N
JESSE MISCO Appleton • Minnesota State University Moorhead “The people working to find better and more suitable cures and treatments are the saviors of the world.”
Plymouth • UW-Madiso n “My aspirations are to ma ke a difference in the lives of people with autoimmune disea ses.”
CAITLYN SCANLAN Sobieski • St. Norbert College “I want to work with little kids … I want to influence their lives to be the best they can be.” MS Connection | 12
DOROTHY BERGHAUS CROAL
SCHOLARSHIP
PAIGE SCHREIBER Muskego • UW-Madison “I admire my mom’s passion and dedication as she fights with this disease.”
KARA SCHRE
IBE
R Muskego • UW-L a Crosse “I will continue to have a positive outlook on life, being grateful fo r every capability I poss ess.”
ABBEY SCHUBERT Sheboygan Northwestern University “I gained a sense of independence that many others my age wouldn’t experience for several years.”
The 2016 program awarded scholarships to 31 students in Wisconsin. There were 815 scholarships totaling more than $1.1 million awarded nationally. CODY SCHUELKE Appleton • UW-Madison “We all need to keep our voice alive that this silent disease impacts all communities.”
LADISH FOUNDATION SCHOLARSHIP
RONALD VARGO
aukee Hartland • UW-Milw ce to give “I feel this is my chan o more back to those wh need it.”
ADDISON SKEELS Fond du Lac • UW-La Crosse “I want to help bring hope to other families (through physical therapy) and to try to fight the disease with one step at a time.”
EMILY TABERS-KWAK Marshall • Edgewood College “Despite the challenges that MS presents in my family, this scholarship has been invaluable in allowing me to grow academically and achieve my goals.”
MS Connection | 13
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Doubling the Impact Wisconsin’s Eric Hovde supports Society with Matching Gift Campaign
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isconsin resident and long-time National Multiple Sclerosis Society supporter Eric Hovde helped increase the impact of donations made to the Society in May by supporting a special challenge fund, which doubled the amount of gifts made up to the first $250,000 received.
“The National MS Society touches the greatest number of people with MS and is the best organization with a viewpoint toward all aspects of research. They understand the urgency to provide people with MS with wellness answers that Eric Hovde provided support will have an immediate to match donations up to and long-term impact $250,000 in May. so they can live as wonderful a life as possible, and we want to support that,” said Hovde, who was diagnosed with relapsing-remitting MS in 1991.
In addition to this gift, Hovde and his wife Sharon, along with The Hovde Foundation, have donated more than $2 million to MS research since 1995, including a halfmillion dollars to launch Fast Forward, a plan developed by the Society to speed commercial development of promising MS therapies. A number of promising outcomes have come from Fast Forwardfunded initiatives, such as the promising early lab results reported in February 2015 from a new class of pharmaceutical compounds showing potential for both protecting the nervous system and turning off immune attacks. See the Fall 2015 edition of MS Connection for more about Eric and Sharon Hovde’s longstanding commitment to the MS movement. n Although the matching gift campaign wrapped up May 31, donations to the Society are still welcome and can be made online at wisMS.org or by calling 262-369-4400.
Donation Keeps Paying Off for Eagle River Woman Financial assistance yields an even larger return on investment
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ast spring, MS Connection shared the story of Brenda Bacon, the Eagle River resident whose progressive MS had made it unsafe for her use the stairs in her home. Through donations made by Wisconsinites on their state income tax forms, Bacon received the financial assistance she needed to install a motorized lift that would allow her to safely get in and out of the house she and Brenda Bacon her husband built 30 years ago. Recently Bacon shared photos of the room they were able to build around the lift and attach to the garage. She explained, “Thanks to the donation
towards the lift, we were able to have enough saved for the room, and we did not have to take out a loan. Now, the lift goes all the way to the garage from inside. I go right in the garage and get in the car. THANK YOU SO MUCH!” n Brenda Bacon leveraged savings made possible through financial assistance to build a room around a lift in order to attach it to their garage. MS Connection | 15
IT’S MORE THAN
A RIDE Take part in the 33rd annual Bike MS: TOYOTA Best Dam Bike Tour, the all-inclusive cycling event August 6-7 that raises funds for multiple sclerosis. It’s more than a ride. It’s an experience driven by camaraderie and marked by passion, inspiration, determination and fun. • Ride 50, 75 or 100 miles per day (one-day ride option, too)*
*R oute distances may vary due to construction
and to ensure the safest route.
• Travel from the Milwaukee area to Whitewater to Madison • E njoy meals, lodging, mechanical support and evening/finish line celebrations Plus all riders receive a free T-shirt, completer bag and medal, and can earn the 2016 commemorative jersey for raising $1,000 or more!
› REGISTER AT BESTDAMBIKETOUR.ORG First-time rider? Use code ROOKIE2016 to waive the registration fee.
DIAGNOSED WITH MS?
THE
BEST
Register as part of the I Ride with MS program to receive a FREE jersey along with special recognition throughout the weekend.
TWO DAYS ON A BIKE
THANK YOU TO OUR PREMIER NATIONAL SPONSORS
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Taking Your Commitment to the Next Level Golden Circle recognizes those who give $1,000 or more annually
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ational Multiple Sclerosis Society donors who demonstrate their commitment with an annual one-time individual gift of $1,000 or more are invited to become members of the Golden Circle, a nationwide community of leaders who share a dedicated passion for changing the world for people affected by MS. Their generosity allows researchers to move solutions forward faster; provides families affected by MS with resources to help them live their best lives; and supports those who advocate for more research dollars and legislation to improve the lives of those affected by MS.
“ I have seen the pool of information MS researchers have gathered grow at an amazing rate. How could we NOT make a commitment?”
– Jane Jacobson
In return, Golden Circle members stay connected to the impact of their gifts through: • Special access to local and national leadership and connections to other Golden Circle members
• Events, conference calls and webinars focusing on progress in MS research and the MS movement • MS news updates and information about the advances in research and care that are most meaningful to them “I have seen the pool of information MS researchers have gathered grow at an amazing rate. How could we NOT make a commitment?” said Jane Jacobson, who, along with her husband, Doug, has been a Golden Circle member for a number of years. In addition to making an annual contribution, the couple has hosted a Golden Circle dinner to sponsor MS scholarships, held an MS lab tour fundraiser and made a $25,000 commitment to the National MS Society’s recently completed Research NOW Campaign. Jane has also traveled to New York and California to hear from some of the nation’s top MS researchers. To learn more about the Golden Circle or to join, visit wisMS.org or contact Brian Sutton at 262-369-4424 or brian.sutton@nmss.org. n Jane Jacobson and her husband, Doug, are members of the National MS Society’s Golden Circle.
MS Connection | 19
EXIT STAGE NEVER. Amy Meisner was diagnosed with MS in 1997. For someone who has always danced, MS would seem like the end. But for Amy, it means the s tar t of a new chapter. She’ll never leave the f loor, s till dances from her wheelchair, and is a great choreographer. Embracing Amy ’s undying pas sion, the National MS Societ y teamed up with LaTonya Swann to create an entirely new and inspired dance experience through vir tual realit y. S e e t h e i r e x p e r i e n ce a n d f i n d o u t h o w y o u c a n s h a r e y o u r s a t W e A r e S t r o n g e rT h a n M S . o r g .
Together We Are Stronger
Honoring 21 Years of Service Dr. Loren Rolak steps down from Healthcare Advisory Committee
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fter 21 years of service, Loren Rolak, MD, has retired from the National Multiple SclerosisWisconsin Chapter Healthcare Advisory Committee (HAC), formally known as the Clinical Advisory Committee, where he acted as chair. Dr. Rolak attended his last meeting with the HAC in May, where he was presented with an award in honor of his commitment to those affected by MS. Over the next year, he plans on doing more research at the Marshfield Clinic, where he founded the Multiple Sclerosis Clinic, before retiring next summer. Upon Dr. Rolak’s retirement, his associate Paula A. Aston, MD, will direct the MS Clinic. When asked which HAC initiatives he was particularly proud of, he shared several examples from over the years.
Dr. Loren Rolak was presented with an award honoring his 21 years of service on the Healthcare Advisory Committee. He was presented the award from fellow committee members, from left to right, Drs. Mary Goodsett, Natasha Frost and Stanya Smith.
“Way back in the 1990s, there were two books published by the National MS Society that described MS. We put copies of those two books in every public library in Wisconsin,” Dr. Rolak said, noting the importance of having the information available in a time before the internet was readily accessible.
“ ... the National MS Society has developed better programs and strengthened ties to MS specialists, as well as the patients themselves.”
– Loren Rolak, MD
Another program of note is the Wisconsin Well Woman Program, which is run by the Wisconsin Department of Health Services and provides preventative care such as mammograms and MS screenings to women with little or no health insurance. The HAC made sure there were neurologists in Wisconsin who would see the women in this program.
“As I was looking back on things, there have been two big changes,” Dr. Rolak said. “One is that diagnosing and treating MS is better now, but also more complicated.” In fact, when he joined the HAC, there was only one disease-modifying therapy approved to treat relapsing forms of MS. He continued, “Secondly, the National MS Society has developed better programs and strengthened ties to MS specialists, as well as the patients themselves.” Over the years, Dr. Rolak has given numerous presentations on MS-related topics, as well as national webcasts on topics such as MS research and treatments. He also served on the National Committee and was inducted into the Society’s Volunteer Hall of Fame for Healthcare Professionals in 2003. “I’m very pleased that Dr. Stanya Smith agreed to be Chairman,” he said. “And there are several new members who are bringing a new enthusiasm to the committee.” n MS Connection | 21
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Date and Time: 07/11/2016 at 6:00 PM Speaker: Lisa Sershon, PA The Center for Neurological Disorders, Milwaukee Location: The Packing House 900 East Layton Avenue Milwaukee, WI 53207 Event Code: TR365839
Date and Time: 07/20/2016 at 6:00 PM Speaker: Jessica Szpak, PA MS Specialist Location: FIELDS AT THE WILDERNESS 511 East Adam Street Wisconsin Dells, WI 53965 Event Code: TR360461
Date and Time: 07/13/2016 at 6:00 PM Speaker: Staley Brod, MD Medical Director, MS Clinic Location: HobNob 277 South Sheridan Road Racine, WI 53403 Event Code: TR359527
Date and Time: 07/19/2016 at 12:00 PM Speaker: Bhupendra Khatri, MD The Center for Neurological Disorders, Milwaukee Location: El Fuego 909 West Layton Avenue Milwaukee, WI 53221 Event Code: TR356281
Date and Time: 07/20/2016 at 6:30 PM Speaker: Susan Hibbs, MD Neuroscience Group, Neenah, WI Location: Amber Grill 1001 Amber Avenue Stevens Point, WI 54482 Event Code: TR368198
Date and Time: 08/04/2016 at 6:00 PM Speaker: Jessica Szpak, PA MS Specialist Location: Sprecher's Restaurant & Pub 1262 John Q Hammons Drive Madison, WI 53717 Event Code: TR360478
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Using Birdhouses, 12-Year-Old’s Fundraising Takes Flight Zach Boldt among Wisconsin’s top fundraisers for 8th consecutive year ne of Wisconsin’s top Walk MS fundraisers for eight years running is Zach Boldt of Whitelaw, Wisconsin. Including fundraising for this year’s walk, which is currently at $4,863 and climbing, Zach has raised a grand total of $35,360.29.
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“Mommy” is Carie Boldt, who was diagnosed with MS in 1996, before Zach was born. She and her husband, Mike, began participating in Walk MS three years later, and turned it into a family event once Zach was old enough to get involved.
Not too shabby for a sixth grader. To say he may be a natural is an understatement. Zach landed on the list of Wisconsin’s Top 100 Walk MS fundraisers for the first time in 2008 at the age of 3.
“ I just say, ‘I’m doing a walk for Mommy. Would you like to pledge?’”
Zach was just five years old when the photo above was taken with his mom and dad at Walk MS. He had already been one of the state’s top fundraisers for two years. Today, at age 12, Zach remains one of the Wisconsin’s Top 100 Walk MS Fundraisers. Next year he plans to publish and sell a book that he’s written called “The Survivors” about six kids on a desert island.
Of course, his mom and dad have helped a bit. In 2010, when he was interviewed for an article about his success at the wise age of 5, Zach explained his approach this way: “Dad helped make the web page, and Mom helps send emails to everyone we know. I just say, ‘I’m doing a walk for Mommy. Would you like to pledge?’”
– Zach Boldt
Now Zach’s fundraising initiatives have become even more robust. For the past few years they’ve included a birdhouse and pumpkin sale. Last summer when the pumpkin seeds failed to take hold, he opted instead to sell painted pots along with the birdhouses. “It’s all the little donations along the way that make the difference, and we remind him of that,” explained his dad, Mike. Carie added that while she and Mike raised Zach to be kind and generous, “his empathy and caring amaze me every day! He is an incredible person and I am so proud to be his mom.” Although Zach admits he could probably “buy myself a pretty good car” for the more than $35,000 he’s raised over the years, he fully recognizes the important efforts his fundraising supports. “My mom has MS and so do a whole bunch of other people – two million in the world. I want to put it toward the MS Society and I’m hoping that the money helps the scientists find a cure.” n Anyone interested in donating to help Zach take his 2016 fundraising total even higher can make an online donation at walkMSwisconsin.org. (Click on “Donate,” then type in his name.)
MS Connection | 23
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Date and Time: 08/17/2016 at 6:00 PM Speaker: Lisa Sershon, PA The Center for Neurological Disorders, Milwaukee Location: Seven Seas Restaurant 1807 Nagawicka Road Hartland, WI 53029 Event Code: TR365848
Date and Time: 09/06/2016 at 12:00 PM Speaker: Bhupendra Khatri, MD Medical Director The Center for Neurological Disorders, Milwaukee Location: Joey Gerards - A Bartolotta Supper Club 5601 Broad Street Greendale, WI 53129 Event Code: TR356283
Date and Time: 08/18/2016 at 6:00 PM Speaker: Susan Hibbs, MD Neuroscience Group, Neenah, WI Location: Zuppas 1540 South Commercial Street Neenah, WI 54956 Event Code: TR368203
Date and Time: 08/24/2016 at 12:00 PM Speaker: Michael Connor, DO Neurologist, Medical Director, MS Clinic Location: Maggiano's Little Italy 2500 North Mayfair Road Wauwatosa, WI 53226 Event Code: TR365849
Date and Time: 09/14/2016 at 6:00 PM Speaker: Lisa Sershon, PA The Center for Neurological Disorders, Milwaukee Location El Fuego 909 West Layton Avenue Milwaukee, WI 53221 Event Code: TR365850
Date and Time: 09/15/2016 at 6:00 PM Speaker: Susan Hibbs, MD Neuroscience Group, Neenah, WI Location: Mahoney's Restaurant & Bar 30 Wisconsin Street Oshkosh, WI 54901 Event Code: TR368206
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How We Move It Wisconsin Chapter News and Notes
Finding Support Self-help groups give those living with MS a
chance to discuss issues, share information and feelings, provide mutual support, socialize and learn about the latest in MS-related research and care in a welcoming, comforting environment. Support groups usually meet once a month and are open to spouses, family and friends. Each is led by a volunteer peer facilitator. Visit wisMS.org and click on “Groups-and-Discussions” or call 800-242-3358 for a full listing of self-help groups. MuckFest™ MS takes place in September at Grayslake, Ill.
The Fun Mud Run MuckFest™ MS is headed to Grayslake, Ill.,
on September 10. MuckFest™ MS is built for laughs and muddy from the get-go. Teams run in the same wave to experience all the muddy shenanigans, epic spills and thrills together. Afterward, participants re-live the adventure and celebrate their accomplishments in the MuckFestival. Spectators are free to attend and little ones can frolic in the free Lil’ Muckers play area. Sign up to participant or volunteer at MuckFestMS.com.
Grants Support Research, Services The Wisconsin Chapter thanks the following organizations for the grants recently awarded in support of research and services that are critical to people affected by MS. $250,000 The Eric D. & Steven D. Hovde Foundation $2,000 Vilter Foundation Inc. $100 Geraldine V. Hoffmeier Fund $100 Joyce Van Gompel Fund $75 John and Julie Franz Paperboat Fund $50 James and Nancy Youngerman Fund
In total, $252,325 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.
Everyday Matters: Living Your Best Life with Multiple Sclerosis
Learn how to use the principles of positive psychology to manage the challenges of living with a chronic disease JULIE BOBHOLZ, PhD by attending Everyday Matters, a free one-day educational program presented by National Multiple Sclerosis Society. This seminar will be presented in Wausau by Julie Bobholz, PhD, Board Certified neuropsychologist with Aurora BayCare Clinic in Green Bay and an associate clinical professor in the Department of Neurology at the Medical College of Wisconsin. Topics will include:
• The principles of positive psychology • Happiness as a habit
• Retraining your way of thinking • Removing barriers to action
The Everyday Matters seminar takes place Saturday, September 24 at Northcentral Technical College – Wausau Campus from 8:30 a.m.-4 p.m. Refreshments, lunch and workbook materials will be provided. Register online at wisMS.org.
MS Connection | 25
Taking Action on World MS Day
First row, from left: Jim Turk, Angie Zimmerman, Jane Schmieding and Laura Sowinski. Second row, from left: Nicholas Turk, Steffany Stern, Jessie Middaugh, Nicole Stiemke, Denise Jendusa, Tarin Lorenz and Becca Jewell. (Not shown: Todd Holesovsky)
LIVING YOUR BEST LIFE WITH MS Saturday, September 24 8:30 a.m.- 4 p.m. Northcentral Technical College – Wausau Campus
Register online at wisMS.org MS Connection | 26
National MS SocietyWisconsin Chapter volunteers and staff members hand delivered more than 700 letters to the legislative offices at the State Capitol in Madison on May 25 in honor of World MS Day. In doing so, some also had the opportunity to talk with state representatives and discuss recent updates about MS.
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.(*)
BIKE MS: TOYOTA BEST DAM BIKE TOUR August 6-7
CENTERS FOR COMPREHENSIVE MS CARE* Green Bay: Aurora Medical Group MS Clinic 920-288-8020
STEVENS POINT
La Crosse: Gundersen Health System MS Center 608-775-9000
September 17
RHINELANDER
Madison: Dean St. Mary’s MS Clinic 608-260-3425
September 17
OSHKOSH
UW Hospital and Clinics MS Clinic 608-262-0546
September 18
WAUKESHA
Wisconsin 2015
Marshfield: Marshfield Clinic MS Clinic 715-387-5350
September 18
Waukesha: ProHealth Care MS Clinic 262-928-8668
CHALLENGE WALK MS
PARTNERS IN MS CARE* Milwaukee: Aurora Advanced Healthcare 414-247-4671
September 16-18
Center for Neurological Disorders 414-769-4040
Door County 2016
Neenah:
Neuroscience Group 920-725-9373
Summit:
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 262-369-4400 or email info.wisMS@nmss.org. National MS Society-Wisconsin Chapter 1120 James Dr., Ste. A, Hartland, WI 53029 262-369-4400 | 800-242-3358
@
wisMS.org
TOLL FREE
2017
Marinette: Aurora Marinette Menominee Clinic 715-735-7421
MS SNOWMOBILE TOUR January 26-28
MS SUMMIT
March 11, 2017
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
NON-PROFIT ORGANIZATION U.S. POSTAGE
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A Publication of the National Multiple Sclerosis Society-Wisconsin Chapter
1120 James Drive Suite A Hartland, WI 53029
MADISON, WI PERMIT NO. 1252
www.wisMS.org Toll Free 1-800-242-3358 262-369-4400
®
Step It Up in September Get involved September 16-18 with one of four fall Walk MS events or Challenge Walk MS in Door County Make your pick and we’ll see you there!
SEPTEMBER 17 & 18 • Stevens Point or Rhinelander on Sept. 17 • Oshkosh or Waukesha on Sept. 18 • 1- and 3-mile routes • Free snacks, entertainment and more • No registration fee or fundraising minimum
walkMSwisconsin.org
SEPTEMBER 16-18 • Wisconsin’s scenic Door County • 30 or 50 miles in three days • An all-inclusive weekend with meals, Lodge accommodations and more • $125 registration fee; $1,500 fundraising minimum
challengewalkMSwi.org
REGISTER, FORM A TEAM OR SIGN UP AS A VOLUNTEER TODAY.