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National Multiple Sclerosis Society-Wisconsin Chapter
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SUMMER 2016 | National Multiple Sclerosis Society-Wisconsin Chapter
Going the Distance
Bike MS: TOYOTABest 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. KaltPresident & CEO
National Multiple Sclerosis Society- Wisconsin 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 Society- Wisconsin 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
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.
Jeffrey Steren Steren Management/McDonald’s
MS Connection | 2 The National MS Society is committed to creating a world free of MS.
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.
Participants of the I Ride with MS program inspire other cyclists at the Bike MS: TOYOTA Best Dam Bike Tour.
MS Connection | 3
T 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
Ten Years and CountingBike MS: TOYOTA Best Dam Bike Tour Team Happy Feet reaches gold
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.”
Team Happy Feet raised more than $50,000 at the 2015 Bike MS: TOYOTA Best Dam Bike Tour.
Continued on Page 4
Susan Grzeskowiak (left), team captain of Team Happy Feet, with team members Kevin and Marianne Jorgensen.
Bike MS: TOYOTA Best Dam Bike Tour is August 6-7. Learn more at bestdambiketour.org.
MS Connection | 4
Continued from Page 3
A Ruff RiderTeam 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.
Raising the BarTeam 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
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
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.
We’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, Kenosha-Racine 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
To End MS, We Walk MSSpring walks show there’s strength in numbers, more to come in fall
WE’RE STRONGER
TOGETHER. WALK MS.
Walk MS participants came together in 16 Wisconsin communities this spring. Four more walks will be held in the fall.
“
MS Connection | 5
MS Connection | 6
T 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.
“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.”
Challenge AcceptedWalk MS participant ups the ante by joining Challenge Walk MS
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 me such a warm hug and scratched 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.
Carol Horton lived with MS for 26 years. “She loved hiking, boating, fishing,” her daughter described.
“ 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
Learn how Alsberg is reaching her $10,750 fundraising goal.
Continued from Page 6
MS Connection | 7
Alicia’s Fundraising PlanAlicia 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 Making 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 Summit Surpassed Expectations Learnings from free event focused on staying stronger together
Nearly 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
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.)
Christopher Luzzio, MD, and Haley Titus, PhD, each presented on their research.
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.
National MS Society-Wisconsin 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.
MS Connection | 8
A 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
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
Scholarship Support for Three SiblingsBenjamin, Emilie and Josh Roper succeed with Scholarship Program
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.
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.
“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
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.
“ The National MS Society’s scholarship program gave me financial relief, which allowed me to focus more on my academics ...” – Josh Roper
Class of 2016MEET 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.”
CODY BRYANMenomonie • UW-Stout“I feel like this scholarship has given me a chance to prove what I can do with a higher education.”
CORRIANNE CAINCedarburg
Concordia University-Nebraska“The impact of MS has reminded
me of the strength of community.”
RABBITS UNLIMITED, LTD.
SCHOLARSHIP
ANNA BUDELMANFond 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.”
RABBITS UNLIMITED, LTD.
SCHOLARSHIP
JENNA BUTTS
Neenah • St. Norbert College
“I feel as though helping
others is what I am truly
made to do.”
SUSANNE WOLFF
SCHOLARSHIP
MS Connection | 9
STACY ESSERTMerril
Northcentral Technical College“I hope to one day work with children and families to help people in situations like mine.”
KATHRYN EBERTMukwonago
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.”
MOLLY DE MARSAshland • UW-Madison
“I will have the opportunity to impact the world for the
greater good.”
WESTON FLOERKEAppleton • UW-La Crosse“I am very proud of what I have accomplished in my first year of college and I couldn’t be more excited for what is yet to come.”
RACHEL DEHMLOWArkdale • Drake University
“My mom’s MS has taught me to chase my dreams and that
I can do whatever I put my mind to.”
Class of 2016SCHOLARSHIP RECIPIENTS
DEBORAH FISHERMilwaukee • 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.”
DOROTHY BERGHAUS
CROAL SCHOLARSHIP
MS Connection | 10
KATIE HAASSobieski • UW-Green Bay
“I would like to work with the elderly who need assistance
with getting aid.”
EUNICE JEAN BUHLER–
OPEN PANTRY SCHOLARSHIP
AMBERLYN KERNAdell
North Central University“Wherever life takes me, I know that my greatest achievements
will be found in hope.”
FATHER CHARLES BROOKS
SCHOLARSHIP
DANIELLE KNUDTSONLa 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.”
RACHEL KRUEPKEJackson • 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.”
T. FERGUSON LOCKE
SCHOLARSHIP
MEREDITH GINGOLDMilwaukee • University of
Minnesota-Twin Cities “I hope to use my public health knowledge to make the public
more knowledgeable about MS.”
LADISHFOUNDATION SCHOLARSHIP
DANIELLE KUHN
Weston • UW-Milwaukee
“I learned to be more vocal
about my knowledge about
MS through my life-long
experiences.”
MADELYN MARTINSpooner Winona State University “Since I have been in college, I have worked extremely hard to try to be the best nurse I can be.”
Class of 2016SCHOLARSHIP RECIPIENTS
ELIZABETH RAHMLOWHartland
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.”
T. FERGUSON LOCKE
SCHOLARSHIP
ABIGALE NICHOLSONPlymouth • UW-Madison“My aspirations are to make a difference in the lives of people with autoimmune diseases.”
CAITLYN SCANLANSobieski • St. Norbert College
“I want to work with little kids … I want to influence their lives to
be the best they can be.”
AARON MEYERGreenfield • UW-Milwaukee
“I look to make positive advances in the technology
world and to help all those I can live easier and simpler lives.”
JESSE MISCOAppleton • Minnesota State
University Moorhead“The people working to find
better and more suitable cures and treatments are the saviors
of the world.”
MS Connection | 12
KEANA MAYERLodi • Creighton University
“Becoming a surgeon will allow me to constantly challenge
myself and grow.”
DIVERSIFIED INSURANCE SOLUTIONS SCHOLARSHIP
KAYLIE MARKSWautoma • Ripon College
“My mom is my hero. My mom has taught me so many things
and given me her unconditional love and support.”
LADISHFOUNDATION SCHOLARSHIP
PAIGE SCHREIBERMuskego • UW-Madison
“I admire my mom’s passion and dedication as she fights
with this disease.”
DOROTHY BERGHAUS
CROAL SCHOLARSHIP
KARA SCHREIBERMuskego • UW-La Crosse “I will continue to have a positive outlook on life, being grateful for every capability I possess.”
ABBEY SCHUBERTSheboygan
Northwestern University“I gained a sense of
independence that many others my age wouldn’t experience
for several years.”
CODY SCHUELKE Appleton • UW-Madison
“We all need to keep our voice alive that this silent disease impacts all communities.”
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-KWAKMarshall • 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.”
LADISH FOUNDATION SCHOLARSHIP
RONALD VARGO
Hartland • UW-Milwaukee
“I feel this is my chance to give
more back to those who need it.”
The 2016 program awarded scholarships to 31 students in Wisconsin. There were 815 scholarships totaling more than $1.1 million awarded nationally.
MS Connection | 13
Center for Neurological DisordersFor comprehensive, patient-centered Multiple Sclerosis care,patients and physicians rely on the expertise of the team at theCenter for Neurological Disorders (CND) at Wheaton Francis-can Healthcare – St. Francis in Milwaukee, one of the largest MS facilities in the country.
Our team is uniquely qualified to meet theneeds of MS patients. In addition to pioneeringresearch and innovative treatment, we helppatients to manage MS – taking care of mind,body, and spirit.
Call (414) 769-4040 to make an appointment,or visit us at mywheaton.org/MS.
3237 S. 16th Street, Milwaukee, WI 53215(enter from 18th Street and Ohio Avenue)
Bhupendra Khatri,MD, Medical Director
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3237 S. 16th Street, Milwaukee, WI 53215 (enter from 18th Street and Ohio Avenue)
For comprehensive, patient-centered Multiple Sclerosis care, patients and physicians rely on the expertise of the team at the Center for Neurological Disorders (CND) at Wheaton Franciscan Healthcare – St. Francis in Milwaukee, one of the largest MS facilities in the country.
Our team is uniquely qualified to meet the needs of MS patients. In addition to pioneering research and innovative treatment, we help patients to manage MS – taking care of mind, body, and spirit.
Call (414) 769-4040 to make an appointment, or visit us at mywheaton.org/MS.
Wisconsin 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
will have an immediate and long-term impact 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.
Last 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 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
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 half- million 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 Forward- funded 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 long-standing commitment to the MS movement. nAlthough 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.
Eric Hovde provided support to match donations up to $250,000 in May.
Doubling the Impact Wisconsin’s Eric Hovde supports Society with Matching Gift Campaign
Donation Keeps Paying Off for Eagle River Woman Financial assistance yields an even larger return on investment
MS Connection | 15
Brenda Bacon Brenda Bacon leveraged savings made possible through financial assistance to build a room around a lift in order to attach it to their garage.
IT’S MORE THAN A RIDEIT’S MORE THAN A RIDE
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)*
* Route distances may vary due to construction and to ensure the safest route.
• Travel from the Milwaukee area to Whitewater to Madison
• Enjoy 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? Register as part of the I Ride with MS program to
receive a FREE jersey along with special recognition throughout the weekend.
THANK YOU TO OUR PREMIER NATIONAL SPONSORS
LOCAL TITLE SPONSOR – Milwaukee and Madison area TOYOTA dealers: Andrew, Don Jacobs, East Madison, Heiser, Hesser, Jack Safro, Kenosha, Racine, Ruda, Russ Darrow, Smart, Wilde
THEBEST
TWO DAYSON A BIKE
AUGUST 6-7
IT’S MORE THAN A RIDE
WHEN: WHERE: SPEAKER:July 6 – 6 PM - 7:30 PM CST Pier 17 Michael Connor Event Code: TR366542 Sheboygan, WI Neurologist, Medical Director, MS Clinic
WHEN: WHERE: SPEAKER:July 7 – 6 PM - 7:30 PM CST Fields at the Wilderness Michael Connor Event Code: TR367178 Wisconsin Dells, WI Neurologist, Medical Director, MS Clinic
WHEN: WHERE: SPEAKER:July 20 – 6 PM - 7:30 PM CST Sebastian’s Steak House Lisa SershonEvent Code: TR364599 Fond du Lac, WI PA, Center for Neurological Disorders S.C.
WHEN: WHERE: SPEAKER:Aug 3 – 12 PM - 1 PM CST Joey Gerard’s - A Bartolotta Bhupendra KhatriEvent Code: TR358564 Supper Club, Greendale, WI Medical Director, The Center for Neurological Disorders, Milwaukee
WHEN: WHERE: SPEAKER:Aug 22 – 6 PM - 7:30 PM CST Delafield Brewhaus Lisa SershonEvent Code: TR367182 Delafield, WI PA, Center for Neurological Disorders S.C.
WHEN: WHERE: SPEAKER:Sept 27 – 12 PM - 1 PM CST El Fuego Bhupendra KhatriEvent Code: TR358565 Milwaukee, WI Medical Director, The Center for Neurological Disorders, Milwaukee
When your MS medication isn’t working for you, it’s time to learn about another option.
You’re invited to an MS speaker event.Join others with MS and hear from experts about an infusion treatment for relapsing MS.
Please RSVP using the event code so we can reserve your seat.MoreaboutMStreatment.com 1-866-682-7502 Copyright ©2016. All rights reserved. GZUS.MS.16.01.0173
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MS Connection | 19
• 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 [email protected]. n
Taking Your Commitment to the Next LevelGolden Circle recognizes those who give $1,000 or more annually
National 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.
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
Jane Jacobson and her husband, Doug, are members of the National MS Society’s Golden Circle.
“ 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
MS Connection | 5
Together We Are Stronger
EXITSTAGENEVER.
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 t il l 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 ow y o u c a n s h a r e y o ur s a t W e A r eS t r o n g e rT h a n M S .o r g .
MS Connection | 21
“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
Honoring 21 Years of ServiceDr. Loren Rolak steps down from Healthcare Advisory Committee
After 21 years of service, Loren Rolak, MD, has retired
from the National Multiple Sclerosis-Wisconsin 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.
“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.
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.
“ ... the National MS Society has developed better programs and strengthened ties to MS specialists, as well as the patients themselves.” – Loren Rolak, MD
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.
Date and Time:07/11/2016 at 6:00 PM
Date and Time:07/13/2016 at 6:00 PM
Date and Time:07/19/2016 at 12:00 PM
Speaker: Speaker: Speaker:Lisa Sershon, PA Staley Brod, MD Bhupendra Khatri, MDThe Center for NeurologicalDisorders, Milwaukee
Medical Director, MS Clinic The Center for NeurologicalDisorders, Milwaukee
Location:The Packing House
Location: HobNob
Location:El Fuego
900 East Layton Avenue 277 South Sheridan Road 909 West Layton AvenueMilwaukee, WI 53207 Racine, WI 53403 Milwaukee, WI 53221Event Code: TR365839 Event Code: TR359527 Event Code: TR356281
Date and Time:07/20/2016 at 6:00 PM
Date and Time:07/20/2016 at 6:30 PM
Date and Time:08/04/2016 at 6:00 PM
Speaker: Speaker: Speaker:Jessica Szpak, PA Susan Hibbs, MD Jessica Szpak, PAMS Specialist Neuroscience Group, Neenah, WI MS Specialist
Location:FIELDS AT THE WILDERNESS
Location: Amber Grill
Location:Sprecher's Restaurant & Pub
511 East Adam Street 1001 Amber Avenue 1262 John Q Hammons DriveWisconsin Dells, WI 53965 Stevens Point, WI 54482 Madison, WI 53717Event Code: TR360461 Event Code: TR368198 Event Code: TR360478
PAID ADVERTISEMENT
PAID ADVERTISEMENT
One 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.
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.
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?’”
Using Birdhouses, 12-Year-Old’s Fundraising Takes FlightZach Boldt among Wisconsin’s top fundraisers for 8th consecutive year
“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.
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.” nAnyone 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.)
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.
MS Connection | 23
“ I just say, ‘I’m doing a walk for Mommy. Would you like to pledge?’” – Zach Boldt
Date and Time:08/17/2016 at 6:00 PMSpeaker:Lisa Sershon, PAThe Center for Neurological Disorders, MilwaukeeLocation:Seven Seas Restaurant1807 Nagawicka RoadHartland, WI 53029Event Code: TR365848
Date and Time:08/18/2016 at 6:00 PMSpeaker:Susan Hibbs, MDNeuroscience Group, Neenah, WILocation:Zuppas1540 South Commercial StreetNeenah, WI 54956Event Code: TR368203
Date and Time:08/24/2016 at 12:00 PMSpeaker:Michael Connor, DONeurologist, Medical Director, MS ClinicLocation:Maggiano's Little Italy2500 North Mayfair RoadWauwatosa, WI 53226Event Code: TR365849
Date and Time:09/06/2016 at 12:00 PMSpeaker:Bhupendra Khatri, MDMedical DirectorThe Center for Neurological Disorders, MilwaukeeLocation:Joey Gerards - A Bartolotta Supper Club5601 Broad StreetGreendale, WI 53129Event Code: TR356283
Date and Time:09/14/2016 at 6:00 PMSpeaker:Lisa Sershon, PAThe Center for Neurological Disorders, MilwaukeeLocationEl Fuego909 West Layton AvenueMilwaukee, WI 53221Event Code: TR365850
Date and Time:09/15/2016 at 6:00 PMSpeaker:Susan Hibbs, MDNeuroscience Group, Neenah, WILocation:Mahoney's Restaurant & Bar30 Wisconsin StreetOshkosh, WI 54901 Event Code: TR368206
PAID ADVERTISEMENT
PAID ADVERTISEMENT
MS Connection | 25
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.
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 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.
How We Move ItWisconsin Chapter News and Notes
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, ServicesThe 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 [email protected].
JULIE BOBHOLZ, PhD
MuckFest™ MS takes place in September at Grayslake, Ill.
MS Connection | 26
LIVING YOUR BEST LIFE WITH MSSaturday, September 248:30 a.m.- 4 p.m.Northcentral Technical College – Wausau Campus
Register online at wisMS.org
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)
Taking Action on World MS DayNational MS Society-Wisconsin 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.
MS Connection | 27
MS CONNECTION IS A QUARTERLY PUBLICATION OF THE NATIONAL MULTIPLE SCLEROSIS SOCIETY-WISCONSIN CHAPTER.
National MS Society-Wisconsin Chapter1120 James Dr., Ste. A, Hartland, WI 53029
262-369-4400 | 800-242-3358 TOLL FREE
wisMS.org@
n Editor: Amanda Gasper Krueger n Contributing Editor: Maureen Waslickin Graphic Design and Production:
Joan Hartin and Amy Malo
To comment or share a story idea, call 262-369-4400 or email [email protected].
Get ConnectedThe 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.
n Sign up to receive National MS Society emails at nationalMSsociety.org/signup.
n Join the MSconnection.org community, a place for people living with MS to learn, share and connect with others impacted by MS.
n 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.
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: Aurora Medical Group MS Clinic 920-288-8020
La Crosse: Gundersen Health System MS Center 608-775-9000
Madison: Dean St. Mary’s MS Clinic 608-260-3425
UW Hospital and Clinics MS Clinic 608-262-0546
Marshfield: Marshfield Clinic MS Clinic 715-387-5350
Waukesha: ProHealth Care MS Clinic 262-928-8668
PARTNERS IN MS CARE*Milwaukee: Aurora Advanced Healthcare 414-247-4671
Center for Neurological Disorders 414-769-4040
Marinette: Aurora Marinette Menominee Clinic 715-735-7421
Neenah: Neuroscience Group 920-725-9373
Summit: Aurora Wilkinson Medical Clinic 262-434-5000
CHAPTER CALENDAR OF UPCOMING EVENTS
BIKE MS: TOYOTA BEST DAM BIKE TOUR
August 6-7
Wisconsin2015
STEVENS POINT September 17
RHINELANDER September 17OSHKOSH
September 18WAUKESHA September 18
Door County2016
CHALLENGE WALK MS
September 16-18
2017
MS SNOWMOBILE TOUR
January 26-28
MS SUMMITMarch 11, 2017
®
1120 James Drive Suite A Hartland, WI 53029
www.wisMS.orgToll Free 1-800-242-3358262-369-4400
A Publication of the National Multiple Sclerosis Society-Wisconsin Chapter
NON-PROFIT ORGANIZATION
U.S. POSTAGE
PAIDMADISON, WI
PERMIT NO. 1252
Step It Up in SeptemberGet involved September 16-18 with one of four fall
Walk MS events or Challenge Walk MS in Door CountyMake your pick and we’ll see you there!
REGISTER, FORM A TEAM OR SIGN UP AS A VOLUNTEER TODAY.
• 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 17 & 18 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