Bike MS: TOYOTA Best Dam Bike Ride Powering MS Research
MS Connection is a quarterly publication of the National Multiple Sclerosis SocietyWisconsin Chapter.
Editor: Amanda Gasper Krueger
National Multiple Sclerosis Society-Wisconsin Chapter Board of Trustees
Content Editor: Maureen Waslicki
David Rodgers, Chair Briggs & Stratton Corporation
Graphic Design and Production: Amy Malo and Joan Hartin
Michael Lutze, Vice Chair Ernst & Young
To comment or share a story idea, call 262-369-7173 or email amanda.gasper@nmss.org
Pamela Evason, Vice Chair Windermere Wealth Advisors, LLC James Rose, Treasurer Baker Tilly Virchow Krause, LLP
National MS SocietyWisconsin Chapter 1120 James Drive, Ste. A Hartland, WI 53029
Robert Sowinski, Secretary Diversified Insurance Solutions
262-369-4400 1-800-242-3358
Colleen Kalt, President & CEO National MS SocietyWisconsin Chapter
www.wisMS.org
Anne Brouwer McMillianDoolittle, LLP
TOLL FREE
@
Tom Golden, Vice Chair M3 Insurance Solutions, Inc.
Š2 014 National Multiple Sclerosis Society-Wisconsin Chapter
NATIONAL Multiple Sclerosis SOCIETY
Where Does the Money Go? 79.2% 20.8% MISSION
FUNDRAISING, MANAGEMENT AND GENERAL
Fiscal year ending September 30, 2013
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Kenneth Minor, Past Chair Sonic Foundry, Inc.
Dennis Christiansen Secured Retirement Strategies Group, LLC Robert Engel Retired, M&I Bank Paul Jones Harley-Davidson, Inc. Rev. 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 Robyn Turtenwald Community Advocate
Robert Buhler Open Pantry Food Marts of Wisconsin, Inc.
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.
The National MS Society is committed to creating a world free of MS.
Reaching for the moon I was struck recently by a quote from an MS researcher who, when asked about our understanding of multiple sclerosis, said: “We haven’t landed on the moon yet, but we’ve tested the rockets.” Indeed, there have been incredible advancements in research and services for people diagnosed with MS. But it’s true; we haven’t “landed on the moon” … yet. With your continued support, we will get there. Certainly one of the most important steps the National MS Society can continue to take is to keep funding the world’s most promising research – and that includes five Society-funded studies based in Wisconsin. This year a record-breaking $50 million will be generated through the Society’s NOW campaign to support MS research – and by 2016 the collective total raised for MS research will reach $250 million. (You can learn more about the NOW campaign on Page 22 of this issue.) For those of you gearing up to participate in an upcoming fundraising event – from August’s Bike MS: TOYOTA Best Dam Bike Ride to our September Walk MS events including Challenge Walk MS in Door County, or even your own Do It Yourself event – thank you for the difference you are continuing to make in the lives of those diagnosed with MS. Together I am sure of this: we will power this MS research rocket ship to the moon. In gratitude,
Colleen G. Kalt President & CEO
“ We haven’t landed on the moon yet, but we’ve tested the rockets.” - Jeanne Loring
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.
• $5,000 Puelicher Foundation Inc. • $500 Evan & Marian Helfaer Foundation • $250 Gift4Giving, a donor-advised fund of Fidelity Charitable
In total, $5,750 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.
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Participants Show What Exercise Can Do
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n March, 14 individuals with MS from throughout southeastern Wisconsin participated in the Westwood Health and Fitness Center’s 5th Annual Triathlon. In this “mini” version of a regular triathlon, they participated in a 10-minute swim, 20 minutes riding stationary bikes and 15 minutes running or walking on an indoor track. For Kathy Korn, Chris Wegner, John
“Mini” triathlon participants got in the pool for a 10-minute swim.
Haupt and Todd Siewert, this triathlon meant that MS was not winning. Instead it meant showing what they were made of and pushing their bodies beyond their comfort zones. Korn was diagnosed with relapsing-remitting MS in 1981. Fatigue, balance and aches are symptoms that she deals with on a daily basis. However, these symptoms did not stop her from participating in the triathlon. She was amazed at how caring and attentive the volunteers at Westwood were in accommodating the participants between events. Korn doesn’t remember the aches and pains of participating,
she instead remembers the energy that was in the air: “The energy was exciting and everyone fed off of everyone else.” When Wegner was diagnosed with relapsingremitting MS in 2007, her doctor told her “You have MS, but you are not MS.” Participating in a triathlon with MS was the least of her concerns; she had to overcome her fear of water. Thanks to a volunteer in her exercise class, she was able to learn how to swim just in time for the event. Wegner’s biggest cheerleader during the swimming portion was her grandson, who held up a sign at the end of her lane while yelling, “Kick, Grandma, Kick!” Wegner smiled and said, “How could this not motivate someone?” Haupt was diagnosed in 1972 with relapsing-remitting MS. Now using a wheelchair, Haupt likes to challenge himself and inspire others around him. He was excited that he was able to finish the triathlon, motivating him to want to participate in other events including Bike MS: TOYOTA Best Dam Bike Ride in August and Challenge Walk MS in September.
“ Wegner’s biggest cheerleader during the swimming portion was her grandson, who held up a sign at the end of her lane while yelling, ‘Kick, Grandma, kick!’ Wegner smiled and said, ‘How could this not motivate someone? ’” Continued on Page 6
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Westwood Health and Fitness Center’s 5th Annual Triathlon challenged participants to a 10-minute swim, 20-minute bike ride and 15-minute run. Fourteen of those who completed it have MS. Continued from Page 5
Siewert was diagnosed with progressive MS in 1995 and has noticed his endurance improving since he began exercising in December. Thanks to his dedication and hard work, he was able to swim nine laps (about a quarter of a mile), one lap more than his goal. “You can push the boundaries,” Siewert said. “You meet people with positive attitudes and that makes things better for you.” These four people, along with the 10 others, were inspired to join the triathlon by Dan Erschen, who also has MS. They all participate in an exercise group that Erschen organized at his business in Waukesha. In addition, Mary Jo Esser, founder of the nonprofit organization Gentle Waves, sponsored six weeks of training sessions at Westwood Health and Fitness Center for the participants. There, they were able to train for the event in a comfortable and friendly environment. Written by Sara Schock, a marketing communications intern for the Wisconsin Chapter and a senior at Mount Mary University. She is studying communication with a health concentration and biology minor.
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Todd Siewert (left), who was diagnosed with progressive MS in 1995, participated in the triathlon event.
In people with MS—
Walking better matters
Only AMPYRA® (dalfampridine), an oral medication, improves walking in people with multiple sclerosis (MS). This was demonstrated by an increase in walking speed.
Visit AMPYRAfreetrial.com to find out more about a FREE* TRIAL. *Limitations and Restrictions apply.
AMPYRA® (dalfampridine) is indicated as a treatment to improve walking in patients with MS. This was demonstrated by an increase in walking speed.
In two pivotal trials 35% and 43% of patients taking AMPYRA responded to treatment vs 8% and 9% of patients taking placebo. Talk to your doctor to see if AMPYRA may be right for you.
IMPORTANT SAFETY INFORMATION Do not take AMPYRA if you • have ever had a seizure, • have certain types of kidney problems, or • are allergic to dalfampridine (4-aminopyridine), the active ingredient in AMPYRA. Take AMPYRA exactly as prescribed by your doctor. Before taking AMPYRA, tell your doctor if you • have kidney problems or any other medical conditions • are taking compounded 4-aminopyridine • are pregnant or plan to become pregnant. It is not known if AMPYRA will harm your unborn baby. • are breast-feeding or plan to breast-feed. It is not known if AMPYRA passes into your breast milk. You and your doctor should decide if you will take AMPYRA or breast-feed. You should not do both. • are taking any other medicines Stop taking AMPYRA and call your doctor right away if you have a seizure while taking AMPYRA. You could have a seizure even if you never had a seizure before. Your chance of having a seizure is higher if you take too much AMPYRA or if your kidneys have a mild decrease of function, which is common after age 50. Your doctor may do a blood test to check how well your kidneys are working before you start AMPYRA.
AMPYRA should not be taken with other forms of 4-aminopyridine (4-AP, fampridine), since the active ingredient is the same. AMPYRA may cause serious side effects, including • severe allergic reactions. Stop taking AMPYRA and call your doctor right away or get emergency medical help if you have shortness of breath or trouble breathing, swelling of your throat or tongue, or hives; • kidney or bladder infections. The most common adverse events for AMPYRA in MS patients were urinary tract infection, trouble sleeping, dizziness, headache, nausea, weakness, back pain, and problems with balance. Please see the Patient Medication Guide on the following page. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.
AMPYRA®, ACORDA THERAPEUTICS® and the stylized ACORDA THERAPEUTICS® logo are registered trademarks of Acorda Therapeutics, Inc. | AMPYRA® is marketed by Acorda Therapeutics, Inc. and manufactured under license from Alkermes Pharma Ireland Limited (APIL), Ireland. | The stylized path logo and the stylized Acorda logo are trademarks of Acorda Therapeutics, Inc. | © 2014 Acorda Therapeutics, Inc. All rights reserved. 05 /14 AMP3087 PAID ADVERTISEMENT
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Experience the Best Register for Bike MS: TOYOTA Best Dam Bike Ride
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t’s been called “the best two days on a bicycle all year.” Don’t miss your chance to find out why. Register now for the 31st annual Bike MS: TOYOTA Best Dam Bike Ride and enjoy a weekend of cycling from Pewaukee to Madison with an overnight stay in Whitewater. The experience includes: • • • • • •
50-, 75- or 100-mile route options on one or both days Meals throughout the weekend Rest stops every 8-12 miles Finish line celebrations Saturday and Sunday Overnight lodging at UW-Whitewater Mechanical and medical support along the route
A registration fee and $300 pledge minimum are required, but firsttime participants can waive the registration fee by asking about the “Ticket to Ride.” Visit bestdambikeride.org for more details and to register. ‘I Ride with MS’ Program debuts in wisconsin Bike MS: TOYOTA Best Dam Bike Ride participants who designate that they have been diagnosed with MS will receive a free “I Ride with MS” cycling jersey and enjoy special benefits and recognition throughout the ride weekend. The program is made possible through Genzyme, MS One to One and Primal Wear. To be part of the program and help inspire others who may not have a personal connection to MS, designate on your registration form that you have been diagnosed with MS and what size jersey you prefer. If you have already registered and want to sign up for the program, contact the Wisconsin Chapter office at 262-369-4400 and ask to be enrolled. Members of the team Sonic Streamers at the 2013 Bike MS: TOYOTA Best Dam Bike Ride
Mooove Up to the Jersey Club
Commemorative jerseys are earned by those who raise $1,000 or more, with special color designations for each level.
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I Ride with
t 2-3) is the New to this year’s Bike MS: TOYOTA Best Dam Bike Ride (Augus pants “I Ride with MS” program, a way of honoring and celebrating partici and who are diagnosed with MS. Amy Rowell, Drew Govek, Pam Dvorak red for Jane Schmieding are four ride veterans who have already registe the program and hope to encourage others to do the same. ars Suppor 30 Ye
ting the MS Moveme nt
Drew Govek
Age: 51 Hometown: Grafton Bike MS Team: FMA Psycholists Diagnosed: 1998
Drew Govek (far left) with the three other original members of his Bike MS team.
Drew Govek will ride somewhere between 400 and 500 miles in preparation for this year’s Bike MS: TOYOTA Best Dam Bike Ride, his 15th year with the event. He’ll be joined for the first time by his oldest son, and also by his younger brother Rick, who started doing the ride before Drew or their other brother Ed were diagnosed with MS. “I still am healthy enough to ride my bike but my brother Ed is having a tough time and cannot ride a bike anymore so I ride to try to find a cure that will help Ed and others.” Although most of his team typically does the 75-mile route both days, this year Drew says he might join a few fellow members in attempting the Century Loop on Saturday. “I like being out in the sun with some friends riding down quiet country roads and working off some of the pounds that accumulated over the winter.”
Pam Dvorak
Age: 45 Hometown: Fitchburg Bike MS Team: The Flying Monkeys Diagnosed: 1998 Even though Pam Dvorak was told that riding tandem with her husband, Corey, at their first Bike MS: Best Dam Bike Ride in 2010 would either make or break a relationship, don’t read anything into the fact that her goal is to ride by his side this year on a single-seat Wilier instead. That purple Berkley tandem “definitely made our relationship and we still laugh about the challenges we had when we first started,” she said. The ride itself has had an impact too. “Since riding in my first Bike MS, I have realized I CAN do so many things even though I have MS.” Her four children, her husband, her fellow Flying Monkeys and even strangers along the route are her cheerleaders. “It is encouraging to hear ‘you can do it’ and I keep that in mind not only going up hills on the ride, but also when I am struggling with MS symptoms.”
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Pam Dvorak was featured in last year ’s Team Captain Guide along with her son Steve (left) and husband Corey (right).
Amy Rowell
Age: 38 Hometown: Muskego Bike MS Team: Sprocket Rockets Diagnosed: 2007
currently saving Amy Rowell (center) is trike. for a new recumbent
Amy Rowell still has her very first bicycle – a red Schwinn – that she received for her fifth birthday. Today she rides the recumbent tadpole trike she bought the night before her first Bike MS: Best Dam Bike Ride in 2009. “I had grown tired of everyone telling me what I could/ couldn’t or should/shouldn’t do, so I dragged my husband to Wheel & Sprocket and test-rode (what is now) my bike around the parking lot, very impulsively made the purchase, and the next day was sitting at the starting line when I realized what I’d done!” Today the 38-year-old wife, mother and Director of Development at a private high school in the Milwaukee area trains by riding that recumbent on a 10-mile route near her home a few times each week. “Ten miles is the average between rest stops (on the Bike MS route) so if I can make it that far, I’m good! It really is that simple – it sounds overwhelming but if you break it up, it is totally manageable.”
Jane Schmieding
Age: 63 Hometown: Madison Bike MS Team: Positive Pedalers Diagnosed: 1978
It’s been 36 years since she was diagnosed with MS and Jane Schmieding feels she’s in the best shape she’s ever been in her life. Her secret? “My attitude that I can try just about anything.” That includes rock climbing, skydiving, rope courses, kayaking, cross-country sit-skiing and bicycling. She adapts each as needed for her MS, such as the hand-crank bike she borrows from her adaptive fitness instructor for rides in and around the Madison area. Although she may not be able to keep pace with other riders and needs her husband’s help to get on to and off of the bike, “I like the feel of moving along fairly fast,” she said. “I want to keep challenging myself to things that are a bit outside of my comfort zone and encourage others to do that, even if it’s walking to your front porch or your mailbox. I’m keeping all my parts in shape so they can start working together when myelin repair comes.”
Jane Schmieding likes to ride in and around the Madison area.
About the ‘I Ride with MS’ Program ation form To be part of the I Ride with MS program, designate on your registr Chapter office that you have been diagnosed with MS or contact the Wisconsin at 262-369-4400 and ask to be enrolled.
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MS Scholar, Community Leader and Now, Committee Member Zach Mielke is raising awareness and staying connected
D
uring the summer of 2009, high school senior Zach Mielke was in Washington, D.C., for a leadership conference. Little did he know he was about to receive life-changing news that would put his leadership skills to use. On July 15, 2009, Mielke was diagnosed with primary progressive multiple sclerosis. “It was a little bit scary. I didn’t really know what it was,” Mielke recalled. “We (my family) did a lot of research.”
heart gave me better purpose and understanding to give back.” Giving back is exactly what Mielke continues to do through an annual Do It Yourself fundraiser, Walk with Strength, a 5K walk that takes place in his hometown of Weyauwega, Wis. He explained that focusing time and energy on his fundraising event was the perfect coping mechanism to channel frustration into
“ This has become more than a project; it has become a way of life.” Zach Mielke, 2010 recipient of the $1,500 National MS Society Bell Family Scholarship.
Prior to his diagnosis, Mielke had experienced numbness, slurred speech, muscle pain and some memory loss. He is currently treating his MS with Gilenya, an oral medication used to reduce relapses and disease progression. An Unexpected Gift and Giving Back A year after receiving his diagnosis, Mielke found out that he would be the 2010 recipient of the $1,500 National MS Society Bell Family College Scholarship. This special gift came as a relief to him and his family as they faced the financial burden of various tests and medication to manage Mielke’s MS.
- Zach Mielke
something fun while increasing MS awareness in his community. His neighbors show their love and support through sponsorships and donations. In the first five years, Walk with Strength has raised more than $35,000. This year, in addition to the walk, there was a brat fry and basket raffles. When asked where he hopes Walk with Strength will be in 10 years, Mielke replied, “I would love to see Walk with Strength become a celebration walk in honor of a cure for multiple sclerosis.” Scholarship Committee Member In honor of his continued commitment to MS awareness and outstanding leadership in his own community, in 2014 Mielke was selected to join the Wisconsin Chapter’s MS Scholarship Committee, which helps renew the applications submitted for the scholarship program.
“Being selected, meeting the Bell family and hearing their story was really neat,” said “This is a huge honor,” he said. “This is an Mielke, who is currently attending Fox Valley amazing experience. I never thought I would be Technical College to pursue a degree in business part of it.” management. “Knowing it came from their MS Connection | 12
“ I would love to see Walk with Strength become a celebration walk in honor of a cure for multiple sclerosis.” Since he was younger, Mielke has always had the desire to help and give back to others. He feels the committee not only benefits from his young, fresh perspective but also gains insight from someone diagnosed with MS who has benefited from the program in the past. Zach Mielke has stayed involved with the Wisconsin Chapter and recently became a member of the MS Scholarship Committee. Mielke, (far right) shown with some of the 2012 MS scholarship recipients, had a scholarship named in his honor that year for his commitment and fundraising efforts.
The MS Scholarship program, funded by individual and corporate donors, provides financial assistance to make the dream of a college education possible. Applicants either have MS themselves or a parent who has been diagnosed.
“The future is bright,” he said. “Being involved with the Wisconsin Chapter and our communities is important.” Mielke hopes all past and future scholarship recipients will continue to give back since they know firsthand the benefits of services and programs offered through their local chapter. “Giving back to the Society doesn’t have to be huge, even volunteering for the day is empowering,” said Mielke. Written by Sarah Eggers, a marketing communications intern for the Wisconsin Chapter and a senior at the University of WisconsinMilwaukee, majoring in economics with a minor in journalism.
WALK TO CREATE A WORLD FREE OF MULTIPLE SCLEROSIS OSHKOSH - SEPT. 14 Menominee ParK
Rhinelander - SEPT. 6 Rhinelander High School
Stevens Point - SEPT. 14 UW-Stevens Point, Multi-Activity Center
Waukesha - SEPT. 14 Frame Park
Walk MS raises critical funds to support life-changing programs and cutting-edge research.
walkMSwisconsin.org
800-242-3358 or 262-369-4400
9 a.m. Registration 10 a.m. Walk Starts
Wisconsin 2014
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Whether they hope to one day bec
ome a doctor
or a nurse, an engineer or teache
Scholarship recipients all show
r, the 2014 MS
a drive to succeed in their chosen fields of study. MS shouldn’t stand in the way of their college education. The National Multiple Sclerosis Society scholar ship program helps lift some of the financial burdens exp erienced by families affected by MS. This year, 21 Wisconsin students are receiving scholarship s.
Jessica Buehler
Wind Lake • UW-Madison “MS has taught me that I am here for a reason and that I want to be able to help people.”
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Jenna Butts
Neenah • St. Norbert College
“I know I can overcome any obstacle thrown in my path with the support of other people and God.”
AnneMarie Croy
Jessi Cook
Montello • Alverno College “I want to be a registered nurse to be able to help people as much as I possibly can.”
Whitney Dankemeyer
Marshfield • UW-Marshfield
“Family will always be there right beside you in the end.”
Waukesha • UW-Stevens Point “If I could have one wish, one simple wish, I would wish for a cure for MS.”
ka Jamie Doc igan
ich Amherst • M niversity U l a ic Technolog on and I rely up “My parents one rt o p p nd we su a r e th o ch a e ” matter what. another, no
Tanner Daines
Appleton • Brigham Young University
“I love being able to collaborate with people and to have the opportunity to create the place they can call home inspires me.”
Megan Elliott
Greendale • UW-Platteville “I try to give back because without the blessings I have been given in life, I would not be where I am now.”
ghly m exists to help hi ra og pr p hi rs la ho Society’s sc achieve their The National MS a parent with MS ve ha ho w or S with M will qualified students ar’s scholarships ye xt ne r fo ns io at college. Applic dreams of going to ober. be available in Oct search Ssociety.org and lM na io at .n w w w t ation, visi For more inform program, donation to the a ith w e ut rib nt . To co for scholarships 9-4400. Chapter at 262-36 in ns co is W e th contact
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Rabbits Unlimited, Ltd. Scholarship
Coty Feith
Eagle River •
UW-Eau Claire “I have been in spired to be an empowering w oman who take s hold of the futu re without looking back.”
Samantha Giesersity
o Unive Whitehall • Viterb ive attitude “A smile and a posit in can go a long way ” . today’s world
Haley Feuling
St. Francis • UW-Platteville “I am thankful for all my father’s diagnosis has taught me in becoming a better daughter.”
Emily Gullerud
Chippewa Falls • UW-Eau Claire “MS has affected my life through what it has done to my father and what it may do in the future.”
Devin Fowler
Fredonia • Concordia University Wisconsin “MS is a challenge, but not a challenge that cannot be fought.”
Christopher Kornowski
Hartland • Concordia University Wisconsin ls that “Life is not about the tria people we face, but instead the wit that we face them h.”
T. Ferguson Locke Scholarship
Randy Mueller
Portage • Greenville College
“I plan to do what I can to support MS research.”
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Shahrukh Qureshi
Brookfield • Milwaukee School of Engineering “MS has taught me to have a greater appreciation for life.”
Kimberly Rohloff
Brookfield • Aveda Institute of Beauty and Wellness “This disease has taught me how precious life is and how to never take anything for granted.”
Fr. Charles Brooks Scholarship
Dorothy Bergaus Croal Scholarship
David Ticks
Cassandra Sprotte
Abbotsford • Concordia University Wisconsin “My mother is an inspiration to me due to the challenges that MS confronts her with and the fact that she continues to fight it.”
Kimberly • Martin Luther College
“This amount of zeal and drive my mom exhibits has motivated me to achieve my goal, and never give up.”
Lauren Zylka
Germantown • Viterbo University
“I have always hoped to grow up and help people.”
Meredith Gingold
Ladish Foundation Scholarship
Milwaukee University of Minnesota-Twin Cities In addition to receiving the Ladish Foundation MS Scholarship, Meredith Gingold is being recognized as a 2014 National Multiple Sclerosis Society Top Scholar. This special designation was given to 13 recipients nationwide who have shown exceptional performance.
“Every day, when I see my dad fighting to stay strong, I know that no matter what the circumstances are, with strength, motivation and support, anything can be accomplished. It is because of my dad that I want to study public health, go to medical school and become a bioethicist …. My dad’s bravery has made me realize that I can and should go after my dreams. I have to get out there, volunteer, advocate, lobby and fight for what needs to be done to help others who cannot fight.”
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PAID ADVERTISEMENT
Ready to learn more about relapsing You and your loved one are invited to an MS LIVING EVENT. Hear from MS experts and others who are living with MS. Plus, get some answers about dealing with MS and information on an oral treatment. A meal will be provided. Free parking or valet available. PLEASE RSVP AT mslivingevents.com or call 1-866-703-6293. Register today. Space is limited.
tuesday, September 16, 2014 12:00 p.m. EXPERT SPEAKER Bhupendra Khatri, MD, Center for Neurological Disorders El Fuego Event Code: TR255762 (1146649) 909 West Layton Avenue, Milwaukee, WI 53221
friday, september 19, 2014 11:00 a.m. EXPERT SPEAKER Amy Neal, PA, MS Specialist Maggiano’s Little Italy 2500 North Mayfair Road, Wauwatosa, WI 53226
Event Code: TR257300 (1148683)
tuesday, September 23, 2014 12:00 p.m. EXPERT SPEAKER Bhupendra Khatri, MD, Center for Neurological Disorders El Fuego Event Code: TR255762 (1146649) 909 West Layton Avenue, Milwaukee, WI 53221 US.MS.MSX.14.03.017 PAID ADVERTISEMENT
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Letting Your Voice Be Heard Advocacy volunteers make a local impact on World MS Day
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early 900 individuals from throughout Wisconsin made their voices heard on World MS Day when letters they signed at Walk MS events in spring were delivered to state representatives and senators. The letters thanked legislators for their continued support of research and funding that benefits those with multiple sclerosis. Electronic versions of the letters were The letters were hand delivered by Chapter also emailed that week. volunteers who spread out through the Wisconsin State Capitol to visit legislators’ offices, introduce themselves and meet with representatives and senators who were available.
Five Wisconsin Chapter volunteers hand delivered nearly 900 letters to more than 115 legislative offices at the State Capitol on May 28, World MS Day.
“I have always believed that what you do is so much more important than what you say. Participating in Take Action Day gave me a chance to do something to support all Wisconsin residents with MS, including me,” said John Murray, a member of the Chapter’s Government Relations Committee (GRC) who helped distribute the letters.
“ Being able to advocate for yourself and others is so empowering.”
- Melissa Volz
“It was such an honor to deliver letters of appreciation to the legislators on World MS Day. Everyone I met was so willing to listen and share their own stories. Being able to advocate for yourself and others is so empowering,” said Melissa Volz, who also is a member of the GRC. In total, more than 115 legislative offices were personally contacted. “Delivering letters to the legislative offices on World MS Day is one way that the few can help the many,” explained Jessica Kramer, Continued on Page 20
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Continued from Page 19
who volunteered to coordinate the delivery and distribution of the letters. “Not everyone can make it to the Capitol to visit with their elected representatives, whether they have health or geographical limitations, so this day is a great way to get the word from each person who lives with multiple sclerosis to the legislature so that we can maintain and raise awareness.
State Representative Mark Miller (D-16th District) spoke with National MS SocietyWisconsin Chapter volunteer Melissa Volz about the prevalence of multiple sclerosis in the state and the importance of more research and greater awareness for people like her who are affected by the disease.
“Signing letters to be delivered ensures that your voice gets heard. Volunteering to deliver the letters places you in an integral role in the legislative process. This effort also reminds us that there are plenty of people out there who appreciate a little education about this disease,” she added. To get involved in advocacy initiatives on behalf of those with multiple sclerosis, or to be part of next year’s Take Action Day on World MS Day, contact Denise Jendusa at denise.jendusa@nmss.org or 262-369-7166.
Support Research with this Exclusive Evening of Food, Learning and Fun Wednesday, September 3 6 - 8:30 p.m. Sonic Foundry at the Network222 Building 222 West Washington Avenue, Madison Admission is $75 per person R.S.V.P. by August 25 to Jordan Barclay at jordan.barclay@nmss.org or 262-369-4404
Join an evening of fine food and a silent auction at On the Move Madison, a fundraising event benefiting the National Multiple Sclerosis Society-Wisconsin Chapter. In support of the NOW research initiative to stop disease progression, restore lost function and end MS forever, the evening includes a research update and the opportunity to meet others who are dedicated to creating a world free of MS. The evening will include: • Research updates • Food and wine samplings from Madison’s best restaurants • Live music by members of Fringe Field with researcher Aaron Field, M.D., Ph.D. • Silent auction of high end items
Sponsorship opportunities are available.
Contact Molly Walsh at mwalsh@groundworkconsulting.org for more information.
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Wisconsin Walk MS Events Become an MS Rallying Point Four more walks coming this fall Walk MS brings together people in communities throughout Wisconsin. This past April and May, more than 10,000 people gathered at 16 Walk MS locations in a show of support for those with multiple sclerosis and to raise money for MS-related research, programs and services. More than $1.2 million has been raised so far with a total goal (including four new fall walks) of $1.4 million. For details on Walk MS in Rhinelander on September 6 and in Oshkosh, Stevens Point and Waukesha on September 14, go to walkMSwisconsin.org. There you can register, form a team or volunteer and start fundraising.
New to this year’s Walk MS events was the “I Walk or Roll with MS” program, which honors those diagnosed with MS who participate in Walk MS. More than 540 people took part in the program at the spring walks.
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How We Move It Wisconsin Chapter News and Notes
Bring It. Run It. Muck It. MuckFest™ MS is coming to the Chicago area August 23. Take a mucky romp through mud and obstacles in support of a world free of multiple sclerosis. The run is pure athletic hilarity on a 5K course full of mud, and featuring outrageous obstacles that will spin, swing and fling participants up, down and sideways. Afterward, there’s a party with food and music in the MuckFestival area. There is also a specially-designed mucky playlot for the kids, called Lil’ Muckers. MuckFest MS is in Lockport, Ill., about an hour outside of Chicago. Sign up to participate or volunteer at MuckFestMS.com. Employer Raises Awareness Vanessa Bushey, diagnosed with MS in 2013, received a big surprise from her company, Jeff Foster Trucking Incorporated. They painted one of their semi-trucks with a ribbon to raise awareness of MS. The truck is a
part of the fleet, but is also used at special events. The MS truck made its first appearance at a Walk MS event in Duluth. The truck appeared in the 4th of July parade in Superior and may make an appearance at certain upcoming National MS Society-Wisconsin Chapter events throughout the year. “I am very proud to work for someone that supports this and me like they do,” Bushey said. Championing MS Research NOW The National MS Society has committed to raising $250 million by early 2016 for MS research through the No Opportunity Wasted (NOW) research initiative. To date, $169.8 million has been raised. To contribute, contact Denise Jendusa at 262-369-7166 or denise.jendusa@nmss.org.
Jeff Foster Trucking Incorporated painted one of their semitrucks in support of an employee recently diagnosed with MS.
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Connect with the MS Community More than 580 people touched by MS – either by being diagnosed or being a caregiver – participate in one of 43 self-help groups in Wisconsin. Join them by finding a self-help group in your community. Other ways to connect to resources, information and people with MS include through msconnection.org, telephone groups such as MS Friends and Café con Leche and peer-to-peer support. Find resources at www.wisMS.org. Free Teleconference Series July 14: Emerging Therapies August 11: Practical Nutrition for People with MS September 8: Financial Planning for a Future with MS To register and receive call-in details for the teleconference, visit www.wisMS.org or call 800-344-4867 (option 1).
Wearing Orange
Employees on the sales teams at J.J. Keller & Associates, Inc. held a Wear Orange Day and a Money Wars for MS fundraiser. They raised $272 which was matched by the J.J. Keller Foundation making their total donation $574.85.
The Event Will Challenge You The Experience Will Change You See Door County in a new way while supporting the MS movement with the three-day, 50-mile Challenge Walk MS, September 19-21. It’s an all-inclusive weekend of motivation and inspiration. Meals, lodging, evening entertainment, support vehicles along the route and themed rest stops approximately every three miles are included. A $1,500 fundraising minimum is required for participants and Super Crew (Super Crew are volunteers who fundraise but walk only as much – or as little – as they desire). Register now for the event that participants have called life changing. Call 262-369-4400 and ask for Nichole Shaffer or go to challengewalkMSwi.org.
Read the Challenge Walk MS Blog, challengewalkMS doorcounty.blogspot.com. MS Connection | 23
Non-Profit Organization U.S. Postage A Publication of the National Multiple Sclerosis Society-Wisconsin Chapter
PAID
Milwaukee, WI Permit No. 2868
1120 James Drive Suite A Hartland, WI 53029
www.wisMS.org Toll Free 1-800-242-3358 262-369-4400
®
Register for one of the fall Walk MS events by Friday, August 1 and you’ll receive a FREE orange pom! Rhinelander Rhinelander High School Saturday, September 6 oshkosh ! NEW Menominee Park Sunday, September 14 stevens point NEW! UW-Stevens Point Sunday, September 14 waukesha Frame Park Sunday, September 14 Check-in: 9 a.m. | Walk Begins: 10 a.m.
walkMSwisconsin.org 800-242-3358 or 262-369-4400