Scholarship Winners Announced
Get In Gear: Best Dam Bike Ride details inside
Love, Marriage & MS: One Couple’s Inspiring Story
Wisconsin Chapter Board of Trustees Kenneth Minor, Chair Sonic Foundry, Inc.
Anne Brouwer McMillian Doolittle, LLP
Martin McLaughlin Reinhart Boerner Van Deuren, S.C.
David Rodgers, Vice Chair Briggs & Stratton Corporation
Robert Buhler Open Pantry Food Marts of Wisconsin, Inc.
Bruce Olson The Marcus Corporation Shelley Peterman Schwarz Meeting Life’s Challenges, LLC
Michael Lutze, Vice Chair Ernst & Young Tom Golden, Vice Chair M3 Insurance Solutions for Business James Rose, Treasurer Baker Tilly Virchow Krause, LLP Robert Sowinski, Secretary Diversified Insurance Services, Inc. Alyson Zierdt, Past Chair Attorney, Retired Colleen Kalt, President & CEO National MS SocietyWisconsin Chapter
Dennis Christiansen Community Advocate Robert Engel Retired, M&I Bank
David Raysich Plunkett Raysich Architects Patricia Raysich Community Advocate
Pamela Evason Windermere Wealth Advisors LLC
Jeffrey Steren Steren Management/McDonald’s
Paul Jones Harley-Davidson, Inc.
Robyn Turtenwald Community Advocate
Wayne Larsen ATI Ladish LLC
Wisconsin Chapter: Where
Molly Walsh Waisman Center
Does the Money Go?
82.6 10.7 6.7 %
Mission
%
Fundraising
%
Management & General
Source: 2011 Audited Financial Statement 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 seeing a world free of MS. ©2012 National Multiple Sclerosis Society-Wisconsin Chapter MS Connection is a quarterly publication of the National Multiple Sclerosis Society-Wisconsin Chapter. Editor: Maureen Waslicki | Assistant Editor: Amanda Gasper | Art Director: Amy Malo To comment or share a story idea, call 262-369-4421.
MS Connection | 2
Join Us for the
Best Dam Bike Ride Dear Friends, If you’ve ever wanted to give the Best Dam Bike Ride a try, THIS is the year to do it. In addition to the traditional route options, we’ve changed the 62.5-mile course to an even 50 and added a new 25-mile one-day loop on Saturday. Committing to any of them helps support the incredible MS research that’s happening throughout the country and in our very own state. In fact, a number of Wisconsin’s MS researchers participate in the ride. There’s a strong history associated with the ride, and efforts toward improving the quality of life for those with MS could not continue without the more than 2,000 Bike MS riders and volunteers who take part. I hope you’ll consider joining them and discover for yourself the power and passion of volunteer MS advocates on wheels.
Colleen G. Kalt President & CEO
Call 800-242-3358 or visit bikeMSwisconsin.org to register.
Grant Awards The Wisconsin Chapter thanks the following organizations for grants recently awarded in support of research, programs and services that are critical to people affected by MS. • $3,000 Green Bay Packer Foundation, for MS Camp for Kids • $2,550 Acorda, for Research NOW • $1,000 Donald and Joanne Krause Family Foundation • $500 Community Foundation for the Fox Valley Region-Karisny Family Fund, Bob & Mary
• $250 West Bend Community Foundation’s-West Bend Mutual Insurance Company Charitable Fund • $200 Community Foundation for the Fox Valley Region-Jewelers Mutual Charitable Giving Fund, for the self-help group in Appleton
In total, $7,500 was received in gifts and grants from January to March 2012. 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, call Cindy Yomantas at 262-369-4431 or cindy.yomantas@nmss.org. MS Connection | 3
How We Move It Wisconsin Chapter News and Notes
MISSION POSSIBLE Lori Kolosowsky’s painting, “Victory Over Fear,” was selected as the featured artwork for this year’s Mission Possible award, which is given to event participants around the country who raise the equivalent of $1 for every person living with MS This year’s National MS in their home chapter, Society Mission Possible award has a special or $.01 for every Wisconsin connection. client served nationally (400,000). The selection committee noted that they were impressed by her talent, creativity and passion for the MS Movement. INTRODUCING THE LENDING LIBRARY The Lending Library offers books, DVDs and CDs on a variety of MS-related topics including symptoms, management, emotional health, exercise and family support. Requested items will be mailed as soon as they become available. For more information, call 800-242-3358 or visit wisMS.org and find Lending Library under the Programs & Services tab. AN EMERGING LEADER Bike MS participant, MS-awareness advocate and past MS scholarship recipient Becky Hall received the U.S. Postal Service’s Emerging Leader award during its 2012 “Women Putting Their Stamp on Metro Milwaukee” luncheon in March. She was recognized for her leadership in the MS Movement. MS Connection | 4
AWARENESS AWARD RECIPIENT The New York City-Southern New York Chapter of the National MS Society recognized Wisconsin Chapter Board of Trustees member Shelley Peterman Schwarz with the MS Awareness Award at that Chapter’s annual Books for a Better Life Awards. She has been living with MS for more than 30 years and is the author of the book series “Tips for Making Life Easier.” MEMORIAL SCHOLARSHIP Shannon Holbert founded the Sherrill E. Holbert Scholarship for Remarkable Young Women in honor of her late aunt who had a progressive form of MS. The scholarship is awarded to young women of color in the Kenosha Unified School District. For more information, visit www.facebook.com/ HolbertScholarship. A WINNING HAND Connie Plier and Shawn
Colleen Kalt (left) accepts the Texas Hold ‘Em “winnings” from Connie Plier and Shawn Corbett on behalf of the Wisconsin Chapter.
Corbett presented a check for $20,000.22 to the Wisconsin Chapter in May. The donation was generated through $10,000.11 raised at their 4th annual Texas Hold ’Em poker tournament and raffle plus a dollar-for-dollar match from Plier’s employer, Schreiber Foods. WORLD MS DAY More than 1,500 letters and emails reached Wisconsin state representatives and senators in Madison in commemoration of World MS Day on May 30. The letters thanked legislators for their support of programs that help those affected by multiple sclerosis and urged them to continue to do so in the future. Nearly 900 letters were signed by participants at Walk MS events this spring. Open Pantry Pin-Ups Rack Up the Donations Open Pantry Food Marts of Wisconsin’s 2012 Walk MS Pin-up promotion
The Open Pantry Walk MS team made a strong show of support in Milwaukee.
and employee fundraiser generated $60,000 to fund the mission of creating a world free of MS. It was Open Pantry’s 14th year for the program. Special thanks to everyone throughout the state who purchased the $1 pin-ups, and to Open Pantry’s employees for promoting the event and joining Robert Buhler on the Open Pantry Walk MS team in Milwaukee.
Congratulations Triathletes!
West Wood Health & Fitness Center in Pewaukee hosted an indoor mini-triathlon in March and reached out to Best Dam Bike Ride participant Dan Erschen to recruit participants diagnosed with MS. The nine who joined trained together for 10 weeks to prepare for the event, which consisted of 10 minutes of swimming, 20 minutes on a stationary bike and 15 minutes Volunteers helped nine people with MS successfully complete a of walking or running. All mini-triathlon in March. “Everyone made it through smiling,” said completed the triathlon with participant Cindy LeBlanc (front left), who was diagnosed in 1991. dramatic improvements in their strength and endurance, including some who initially had a hard time walking one lap and ended up completing the event by running 11 laps – one full mile – without stopping. “The key to making progress with exercise when you have MS is moving as much as you can as consistently as you can,” said Erschen, who has had MS for more than 20 years and is training for his 7th Best Dam Bike Ride in August. Special thanks to the team at Westwood for helping the participants train and to Mary Jo Esser at Gentle Waves who raised money for everyone’s entry fee. MS Connection | 5
Michael Carrithers: Maintaining Immune Surveillance
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ur goals are to develop new and safer treatments for patients with all forms of multiple sclerosis,” said Dr. Michael Carrithers, an associate professor of neurology at the University of Wisconsin School of Medicine and Public Health.
it’s relevant for patients. For example, some patients developed progressive multifocal leukoencephalopathy (PML) while on natalizumab (brand name Tysabri, an
Dr. Carrithers practices at the University of Wisconsin Hospital and Clinics and the William S. Middleton Veterans Hospital. He began studying MS in 1997, while he was at Yale University. He received a $306,292 grant from the Dr. Michael Carrithers’ goal is to National Multiple Sclerosis develop treatments for people Society in 2008 to study with MS. immune surveillance and injection used to treat people migration of cells in the with relapsing-remitting MS). brain and spinal cord. Natalizumab slows the movement of immune cells to What is Immune prevent them from crossing the Surveillance? blood-brain barrier into the Immune surveillance is the brain and spinal cord. While process where the immune this can prevent damage to system monitors the body for the brain and spinal cord, pathogens such as viruses and it hinders normal immune parasites. In normal immune surveillance, potentially leavsurveillance, the immune ing patients open to infections system differentiates between such as PML, a rare disease what belongs in the body and that is sometimes fatal. There what does not. In MS and is about a 1-in-1,000 risk for other autoimmune diseases, developing PML for patients the immune system attacks treated with Tysabri. what belongs in the body. According to Dr. Carrithers, immune surveillance is “clinically relevant,” meaning MS Connection | 6
Symptoms of PML include clumsiness, weakness on one side of the body, vision
changes, confusion and changes in personality. “Patients were started on natalizumab and some developed PML,” Dr. Carrithers said. “Unfortunately, this was proof of the concept that immune surveillance was important to the clinical treatment of MS. Without normal immune surveillance, patients can have life-threatening infections.” Dr. Carrithers addresses this lack of normal immune surveillance in his research. “The goal is to identify factors that may mediate or repair normal immune surveillance of the brain, while also being able to keep out the disease causing cells,” he explained. Repairing ‘Broken’ Surveillance One such factor is called epithelial V-like antigen, or EVA. The EVA is active on cells located in a barrier in the brain called the blood-cerebrospinal fluid barrier. EVA interacts with T lymphocytes, a type of white blood cell. During normal immune surveillance, T lymphocytes move through the barrier and destroy foreign cells. But in MS, T lymphocytes attack the myelin coating on nerves.
“EVA binds with the T lymphocyte,” said Dr. Carrithers, explaining EVA’s role in immune surveillance. “This
of PML or other opportunistic infections,” he said. “But by itself, it targets a molecule, maybe as an immune therapy.”
“Our goals are to develop new and safer treatments for patients with all forms of multiple sclerosis.” causes the blood-cerebrospinal fluid barrier to become tighter (making it harder for infections to enter the brain).” According to Dr. Carrithers, EVA allows some T lymphocytes to still get through the barrier, even though the barrier is tighter. “EVA allows normal surveillance to occur, but it doesn’t allow too many T lymphocytes to pass into the brain,” he explained. “The hope now is that we could somehow activate that molecule so that a small number of T lymphocytes would still perform immune surveillance, but large numbers of disease causing cells would not get in.” The benefits could be two-fold, according to Dr. Carrithers. “It could be helpful in patients who are already receiving treatment such as natalizumab to prevent, or at least lower the risk, of the development
Dr. Carrithers also generated a new mouse model of MS with experimental autoimmune encephalomyelitis (EAE) that has lower levels of EVA in the area in the brain where normal immune surveillance occurs. The new model showed that severe forms of MS are
associated with changes in normal T lymphocyte immune surveillance. “It was a good model for very severe MS, which from a clinical perspective is sort of the big picture for a subset of patients,” Dr. Carrithers said. Another New Field of Research Dr. Carrithers said another avenue of his research has “led us into a new field of immunology and MS research.” He is looking at sodium channels, which allow electric currents to move along nerve fibers and signal the nervous
Veterans with MS According to the Department of Veterans Affairs, approximately 40,000 veterans are diagnosed with MS. As the Director of the MS Clinical program at William S. Middleton Veterans Hospital in Madison, Dr. Michael Carrithers treats around 200 veterans with MS a year. The hospital is designated as a MS Center of Excellence by the United States Department of Veterans Affairs. Dr. Carrithers said he sees a higher percentage of patients with progressive MS and a lower female-to-male ratio of patients diagnosed with MS at the Veterans Hospital than in the general MS population. “At the UW Hospital and my VA practice, the biggest challenge is when patients have breakthrough disease or secondary or primary disease,” he said. “My clinical practice helps me appreciate the most important therapeutic challenges.” For more information on veterans with multiple sclerosis and the MS Centers of Excellence, visit www.va.gov/MS. MS Connection | 7
Continued from Page 7 system, in macrophages, a type of white blood cell that is involved in the body’s immune response. His lab created a mouse model that has a sodium channel, called NaV1.5, expressed in the macrophages of the
mouse. He said, “The results were striking in that the mice that expressed the sodium channel in their macrophages got much less severe disease. Several labs are looking at how macrophages can help with nerve repair.”
He continued, “We’re not entirely sure this helps with the progressive stage of the disease. But that is one of the hopes, that it would not only prevent disease initiation and relapses, but that it may help with progressive lesions.”
MS Research NOW The MS Research NOW speaker series features noted researchers and neurologists sharing the latest developments in MS research. It’s your chance to hear firsthand what is happening in the world of MS research and emerging therapies. Mark your calendar for the next events in this series:
Milwaukee
Green Bay/De Pere
Randall Schapiro, M.D., founded The Schapiro Center for Multiple Sclerosis at the Minneapolis Clinic of Neurology. He has lectured and written extensively on all topics associated with MS management. Dr. Schapiro currently serves on the National MS Society’s Clinical Advisory Board.
John Fleming, M.D., is a neurologist, professor and MS Clinic Director at the University of Wisconsin-Madison, specializing in MS and virology. He has received numerous Society grants to conduct MS research. Most recently, he is the principal investigator in a study of a probiotic treatment for MS, exploring how the ingestion of worm eggs changes the immune response in people with MS.
Dr. Randall Schapiro Saturday, September 8 9-11 a.m. Peck Center 10001 W. Bluemound Rd.
Registration deadline: August 31
Dr. John Fleming Saturday, September 15 9-11 a.m. UW-Green Bay 2420 Nicolet Dr.
Call 262-369-4400 or go to www.wisMS.org to register. MS Connection | 8
Keep Stepping Up Against MS
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hank you to the 11,500 participants and volunteers who came together in 18 communities throughout the state this spring for Walk MS, Wisconsin’s largest annual fundraiser supporting MS research, programs and services.
The prize deadline has been extended to July 13. Please consider making a(nother) gift today – every dollar makes a difference! Visit walkMSwisconsin.org or call (800)242-3358 to donate.
Win free Green Bay tickets or a $25 gift card* Details at walkMSwisconsin.org *for donations made between 5/7/12-7/13/12.
Thank You 2012 Walk MS Sponsors
DeanCare St. Mary’s Hospital (Madison & Janesville) Biogen Idec
Inspiration Sponsors Data Dimensions Mayo Clinic Health Systems Questcor
Rockford Silk Screen Processing Smart Choice MRI
Robinson Metal Principal Financial Harbour Investments
Community Sponsors PPD Marshfield Clinic E&D Water Works
Prevea Kohler
NEWisconsin MRI JF Ahern
Encouraging Sponsors UW Health Mercy Health Systems
Green Bay Packaging REI Engineering
Rest Stop Sponsor Carpenter’s Union US Bank Sacred Heart Hospital Agnesian Health Care Concours Motors
Motivational Sponsors Trust Point Group Health Cooperative Tricor Insurance Hanger Prosthetics
Writing Design Studios Grant Regional Health Center Carrier Insurance MS Connection | 9
Best of the Rest Rest stops are vital in getting Walk MS, Bike MS and Challenge Walk MS participants to the finish line, but it’s the people hosting the stops that make them highlights of each event.
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hink of the best road Laurie Schill. “From the area to a rejuvenation station, trip you’ve ever been Knutsons who put out a spread though, is the ingenuity and of baked good for instant sugar on. Chances are what made organization of the volunteers gratification to the water and it memorable, what made who run them. They make it really stand out, wasn’t so each stop unique and add that fruit donated by Culligan and Machi Fruits & Vegetables, much where you were going personal element that is so but the experiences and the critical to participants, some of everyone really comes through to make sure the stops along event participants are the way. The taken care of.” same can be said for events An Oasis Along like Walk MS, the Asphalt Bike MS: Best “Rest stops show the Dam Bike walkers that people Ride and care about what Challenge they are doing and Walk MS. give them a morale While the “When they’re coming to me, they’re my riders. I want them to booster. It is invalufinish line for have the best experience,” said Anne Scherwinski, whose Bike able because it gives each is an MS rest stop is know for fun themes such as Charlie and the walkers a chance to exciting place Chocolate Factory. recoup,” explained to reach, it’s whom are pushing themselves Karen Pagel, who has hosted the rest stops along the way physically and mentally in a rest stop for each Challenge that can be instrumental in their determination to reach Walk MS since it began. She’s getting you there. the finish line. One rest stop been joined by her son, Tim, may offer water bowls for who has MS, his father, and As anyone affected by MS four-legged walkers, another his mother- and father-in-law. knows all too well, everyone’s might serve bagels and They try to incorporate a fun body is different. Because the bananas. Some put on little theme into each year’s stop safety and comfort of each performances, others have and include quick games with participant is paramount to karaoke. All come with an prizes and small treats. all Wisconsin Chapter events, abundance of enthusiasm. it makes sure every rest stop “This was our way to feel is equipped with water, “It’s amazing how much our we were able to make a medical supplies and support volunteers and sponsors step difference,” she said. vehicles for those who need up,” said Vice President, transportation. What really Marketing & Development transforms each from a rest MS Connection | 10
It’s a sentiment echoed by Anne Scherwinski, who began hosting a rest stop at Bike MS 15 years ago after her husband, Chuck, was diagnosed with MS. “I wanted to be part of the event without physically impaling myself on a bike,” she joked.
“It’s a family fun day for us, and it helps people feel appreciated.” What began as a way of experiencing the ride without riding in it has turned into an annual tradition for family and friends who help staff what they have dubbed “the Best Dam Rest Stop.”
It’s gained notoriety over the years for being the only one to serve peanut butter and for having elaborate themes like All American, disco, Michael Jackson and Wizard of Oz. Not all rest stop “hosts” have a direct connection to MS, though. The Roy family has been hosting their Walk MS rest stop since the early 2000s when the Roy boys were ages 4, 8 and 10. Now they’re teenagers who do most of the work themselves. “They like taking control of it now. They don’t want my help. They cut up the apples and I blow the bubbles,” said their mom, Sharon. She, along with her sons and nephew,
got involved by responding to an ad, thinking it would be a fun family day. It was, and has continued to be every year since in what is a growing family tradition; the nephew is now married and brings his wife to help. “It’s a family fun day for us, and it helps people feel appreciated,” she said. “People need that pick-meup to help them through the event,” Scherwinski added. “They’re amazingly grateful people who are doing this incredible task. To see the relief on their faces, to give them love and energy and enthusiasm – it’s truly rewarding for us.”
Rest Stops Add a Personal Touch
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Wisconsin Artists Reflect on Change By Susanna Redmer
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hree Wisconsinites are among those whose work has been included in the 2012 Art Showcase for People Living with Multiple Sclerosis, presented by the Multiple Sclerosis Association of America (MSAA). For this year’s theme of “Change,” the artists were asked to reflect on the positive changes and experiences they found in their lives. Lori Kolosowsky, from Watertown, Wis., holds an Associate of Arts degree in commercial art from MATC. Her paintings have been auctioned off to Challenge Walk MS participants. After being diagnosed with a benign form of MS, Kolosowsky has experienced cognitive difficulties and problems with her upper body and hands. “My goal is to grow as an artist and as a Volunteer Community Ambassador for people living with multiple sclerosis,” she said.
“June” was one of two works by Heller.
Kolosowsky had two MSAA-showcased paintings titled “Victory Over Fear.”
Patricia Heller, from Sturgeon Bay, Wis., only began painting three years ago but has already raised more than $20,000 through the sales of her artwork, with all the proceeds going to fund MS research and programs. She was diagnosed with MS in 2005 and today experiences extreme fatigue, balance difficulties and vision impairment. “I view the world around me very differently – in a better, richer way. I see colors, perspective, textures, nature, people, architecture and life with much more appreciation and understanding,” Heller explained.
Yvonne Fercy of Abrams, Wis., has always loved color, patterns and creating. She describes her art as “big, bold, colorful, fun, and inspiring.” Diagnosed with relapsing-remitting MS in 2007, she experiences symptoms varying from numbness/tingling to heat sensitivity. She started a non-profit organization, Liberty Comfort Fercy’s work includes Quilt Corporation, that makes quilts for those experiencing an illness “Lighthouse Mural.” and/or those in a wheelchair.
Visit http://msassociation.org/artshowcase2012/ to view these artists’ work and see other featured pieces from across the country. Susanna Redmer is a freelance reporter and the author of the young adult historical fiction novel, “The Time the Earth Shook.” She is also a stay-at-home mom and proud wife.
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“I ride because my wife and friends have MS and I can’t fix them but I can pedal hard and I can organize a team and we can all raise money.” “They treat us like kings and queens for the weekend and all we have to do is ride.”
“I ride because I know that Society-funded research has had an extremely positive impact on the lives of many with MS.”
“Two things make Bike MS stand out: the route and the full support that is in place for every turn of the wheel.”
This is
“This ride is the most well-organized, emotionally fulfilling charity event in which I have ever participated. The supporters make me cry every year when they sign my number, hug me and thank me at the end of the ride.” “We do it because it’s all we can do.”
why I ride… “My mom has MS and this is one thing that I can do for her. She does so much for me.”
“Being diagnosed with MS myself, it is a blessing to see ALL of these people come together literally for you.” “I am fortunate to be in remission right now, but I know it could be temporary. So why do I ride Bike MS? Because I still can.”
Join Bike MS: TOYOTA Best Dam Bike Ride Money raised helps drive research, programs and services to enhance the quality of life of everyone affected by multiple sclerosis. This year’s new 25-mile loop makes it easier than ever to “test-ride” one of Wisconsin’s best loved and longest running rides.
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Bike MS:
Best Dam
Bike Ride Bike MS: Toyota Best Dam Bike Ride August 4-5, 2012 Travel from the Milwaukee area to Madison with an overnight in Whitewater. In addition to traditional 75- and 100-mile “Century Loop� daily route options, the 29th annual ride will feature a new one-day 25-mile loop and replace the 62.5-mile route with a 50-mile course. Bike MS: TOYOTA Best Dam Bike Ride is all-inclusive and fully-supported. Details at bikeMSwisconsin.org.
MS College Scholarship Recipients
Class of 2012
MS shouldn’t stand in the way of a college education. The National Multiple Sclerosis Society Scholarship Program, funded by the generosity of individual and corporate donors, helps make sure it doesn’t by providing scholarships to high school seniors affected by MS and young adults who haven’t yet begun their post-secondary education. The 2011-12 program awarded $44,000 in scholarships to 27 Wisconsin students, who were honored at the annual On the Move Luncheons in June; 645 scholarships totaling more than $1.1 million were distributed nationwide.
Paige Burgess Oconomowoc UW-Oshkosh
Amanda Dehmlow Arkdale UW-Stevens Point
“My dad has taught me how to be strong no matter what comes at me.”
“Since multiple sclerosis was introduced to my life, I am always hoping for a cure.”
James Ebben
The Buhler Family Open Pantry MS Scholarship De Pere Michigan Technological University “Throughout life we’re brought up to see our parents as our rock, so it can be a difficult transition to reverse that role.”
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Rebecca Fijalkiewicz Chetek UW-Madison
Andrea Gross Milwaukee University of Illinois – Chicago
“I am going to college for nursing. This way I can use my abilities and knowledge to help people like my mom.”
“My parents try their best to help me and my siblings live a normal life, however MS is an illness that impacts everyone around the affected person.”
Rachael Grunfelder Diversified Insurance Services MS Scholarship
Andrew Hall Hartland UW-Eau Claire
Anthony Hall Hartland UW-Whitewater
“MS has been a part of my life for over a year now. We, as a family, have become closer and created a bond that will keep us together forever.”
“Ever since my mom was diagnosed with MS, our family looks forward to the most important weekend of the year: the first weekend of August when Bike MS takes place.”
“I’ll never stop riding in Bike MS until I know my mom won’t have to face the daily challenges of having MS.”
Jennifer Haman Racine UW-Parkside
Kayla Hanson Baraboo UW-Oshkosh
Sarah Jones Janesville UW-Milwaukee
“My dad has shown me that giving up is not the answer in life. It is about giving it all you’ve got and making the best of it.”
“My mother’s MS has taught me that no matter what I am going through or no matter how much I may be hurting, if there is a will there is a way.”
“My dad has taught me so much about being strong through whatever life throws my way, to never give up and always strive for the best.”
Travis Kobs Appleton UW-Madison
Avery Kohrell Brillion St. Norbert College
“Life is exactly what you make of it, and while a roadblock may slow your path, it can never stop you if you don’t let it.”
“As I began to become more aware of my dad’s MS, I also became more aware of his inspiring inner-strength.”
Waukesha UW-Milwaukee
Brianna Laack The Ladish Co. Foundation MS Scholarship Two Rivers UW-La Crosse “My mom’s MS and mental strength have pushed me to look at my own strength differently.”
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Asia Laudal Eau Claire UW-Green Bay
Helaina Marlow T. Ferguson Locke MS Scholarship Hartland University of Minnesota
Michael Meade Wauwatosa St. Cloud State University
“Walk MS opened my eyes to the number of people that this disease has truly affected.”
“Until my mommy feels like superwoman again, until she wins her kryptonite battle, I will be at her side.”
“The biggest impact my mom’s MS has had, is how I fear what could happen and the unknown.”
Mullins Named a Top Scholar Shelly Misco Appleton UW-Superior “Having this scholarship is a gift that I can give my mother for being so dedicated to the success of my life”
Ryan Mueller Portage Northwestern College “Has MS changed our family for better or worse? I’m not quite sure, but as long as we’re together, we can get through anything.”
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In addition to receiving the Bell Family MS Scholarship, Reyne Mullins was recognized as a 2012 National MS Society Top Scholar, a special designation bestowed on those who have shown exceptional performance.
Reyne Mullins Bell Family MS Scholarship Monona Earlham College “MS has given me a profound appreciation for the community of supportive friends and family that surround me.”
“I have come to appreciate the gifts that dealing with multiple sclerosis has brought me,” said Mullins, who plans to study psychology at Earlham College in Indiana. A resident of Monona, Wis., Mullins attended Madison Country Day School where he was a member of the crew team and studied Japanese. He graduated in 2011 and has been working full-time as a prep cook and cashier at a neighborhood restaurant to save money for college. “MS terrifies me. But I have come to appreciate the gifts that dealing with it has brought me,” he said in his application. “I have realized the great value of the communities that have surrounded me all my life, and I am instilled with a passion to help cultivate new supportive communities where they are needed.”
Ashley Platow Muskgeo UW-Whitewater “MS has taught me that I have the most amazing dad. He is so inspiring to me. He is someone I look up to. He is my hero.”
Olivia Schmidt Pulaski UW-Green Bay “Spending a life worrying is wasting quality time that could be spent making wonderful, long-lasting memories.”
Brennon Scallon West Salem Western Technical College UW-La Crosse “On the days it is obvious my mom struggles physically and mentally, I try hard to make her proud by helping out.”
Rea Solomon Eunice Jean Buhler Open Pantry MS Scholarship Monona UW-Madison “MS has made me so much stronger and extremely mature for my age.”
James Walker
Father Charles Brooks MS Scholarship Stoughton Madison Area Technical College
“I will volunteer again at Bike MS because I want to help find a cure for MS. I keep praying every day for a cure.”
Ross Thorn Rhinelander UW-Stevens Point “My mother’s struggle with MS has taught me that no matter what is ailing me, there is always some way to carry myself forward and accomplish my goals.”
Jacob Wurtz
2012 Mielke Family MS Scholarship Loyal UW-Madison
“My father inspired me to be the kind person I am today and to push myself to achieve to the best of my abilities.”
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Love, marriage and MS:
How a duel diagnosis and online dating dare broug By Susanna Redmer
I
met my husband about four years ago after a friend dared me to give online dating a try. We talked online for a bit, and then decided to
with me, run marathons and do adventure biking.” I never thought in a million years he would smile and say, “Huh, small world. I have MS too.”
Both Susanna Redmer and her husband, Tim, were diagnosed with MS before they met. Their son, Will, was born in 2010.
meet in person since we both wanted to get to know each other better. When we met I thought I’d tell him my usual spiel about MS just so he knew what he was getting himself into. “You know I have this thing,” I had begun. “It’s not a big deal, but sometimes I feel too fatigued to do anything. I take an injection, and oh, it’s called MS,” I had finished in a hurry. I had expected him to say, “Never mind about you, I want someone to go surfing MS Connection | 20
looking for. He was intelligent, confident, athletic, a record-setting college runner and kind. After just a few months, we realized that we wanted to spend our lives together. When we said our wedding vows a year later, the phrase “in sickness and in health” had a deeper meaning to us, because sickness could strike at any time due to the unpredictability of MS, and soon after we got married it did. Within the year we got married our son Will was born. Before he was born I remember wondering if I could handle the fatigue, the stress of child birth and coping with a new little baby who could do nothing for himself. I was scared, but I remember my husband said something to me that I’ll never forget, “You’ll always have me at your side.” After Will
I remember sitting in stunned silence that not only had I found someone who understood what life was like with MS, but also someone I was interested in. He knew about the I never thought in a injections, the doctor’s million years he would appointments, the fatigue and everything smile and say, “Huh, small else I experienced daily. I didn’t start dating him world. I have MS too.” because he had MS, but was born I went through the instead because he was same feelings most new moms everything I had been
ght Café Moms founder and her husband together experience – confusion about what to do with a new baby, but ecstatic I had a healthy baby boy. After a few months, I saw that friends who had their children around the same time I did were starting to bounce back, train for half marathons and triathlons and go back to work. I wasn’t in their shoes, since I was having an MS relapse, due to the strain of giving birth and being a new mom. I felt isolated in my feelings and alone in my daily struggles of being a stay-at-home mom. I became worried Will would miss out on things because I couldn’t do them, and upset that I had yet another relapse. Through it all I had my husband at my side, and still do. I also had a team of doctors who cared about me
and helped me to recover. I’m currently taking Tysabri, and my husband started on the
The wedding vows “in sickness and in health” had a deeper meaning for Susanna and Tim.
new oral medication, Gilenya, since medicine compliance was always an issue for him.
Tysabri has helped me go from watching my life go by, to becoming an active participant in my life. Since my last relapse there are some things I can’t do anymore, but I can look at my son and find joy through the way he experiences life. From my recent relapse, Café MoMS was born. It’s a support group where mothers with children of any age can go to express their concerns, listen to new research and find support in a nurturing environment with people who know what it’s like to walk in your shoes. In a supportive environment mothers find they’re not alone. Susanna Redmer is a freelance reporter and the author of the young adult historical fiction novel, “The Time the Earth Shook.” She is also a stay-at-home mom and proud wife.
About Café MoMS Self-Help Group Café MoMS is a group where moms diagnosed with MS, with children of any age, can learn they’re not alone. The group shares parenting tips and hears from guest speakers, and it gives moms a chance to relax in a stress-free environment. Meetings are held at 6:30 p.m. the first Thursday of every month at Stone Creek Coffee, 601 E. Silver Spring Dr. in Whitefish Bay. Anyone interested in joining is welcome to call Susanna at 920-242-6966 for more details. Café MoMS is one of 43 MS-related support groups throughout the state. To find a group that fits your interests and needs, go to www.wisMS.org and find “Support Groups” listed under “Programs & Services.” MS Connection | 21
Social Security Disability and Unemployment
T
o qualify for disability benefits from the Social Security Administration (SSA) you must be unable to work. To qualify for unemployment compensation benefits from the state, you must be ready, willing and able to work. If you apply for disability benefits from SSA while you’re receiving unemployment compensation benefits, it looks like you’re saying inconsistent things: you’re telling one agency (SSA) you cannot work and another agency (the state unemployment compensation department) you can work. Indeed, if you’ve applied for Social Security disability benefits and you’re claiming you were disabled during any period of time you received unemployment compensation benefits, you may have a problem. What do you do if you’ve recently been laid off work and you’re thinking about applying for Social Security disability? Should you not apply for unemployment compensation for fear it could interfere with a future disability claim? Consider what happens if you don’t qualify for Social Security disability benefits. If you do not apply for unemployment compensation, you will receive no benefits whatsoever. How do you support yourself ? MS Connection | 22
is one of those situations where it is essential that you have a lawyer represent you at your disability hearing. A lawyer can figure out if receipt of unemployment compensation benefits is truly inconsistent with being found disabled by SSA. For example, if your impairment meets the medical requirements set forth in SSA’s Listing of Impairments, there may be less of an inconsistency. Receipt of unemployWhat do you do if you’ve recently been laid off work and ment compensation after being laid off you’re thinking about applying from part-time work for Social Security disability? may not matter to SSA. There are circumstances involving claimants over age that individuals need not 55 that are not inconsistent. choose between applying for Or a lawyer may find some unemployment insurance and other way to make receipt of Social Security disability unemployment compensation benefits.” Nevertheless, the not totally inconsistent with Chief ALJ instructed decision being disabled. makers to consider the application for unemployment On the other hand if it is benefits and the surrounding totally inconsistent, a lawyer circumstances as evidence in may recommend using an a claimant’s case and to figure out just how inconsistent receipt “onset date” for disability of unemployment benefits is that comes after you stopped with the disability claim. receiving unemployment compensation benefits. As a rule, receipt of unemployTom Bush is the preeminent expert on SSDI ment benefits for the same in Southeast Wisconsin. A Wisconsin period of time you’re claiming Chapter volunteer for 20 years, he was you were disabled makes a inducted into the National MS Society’s Volunteer Hall of Fame in 2008. Tom’s disability claim more difficult, website is www.tebush.com. though not necessarily impossible in all circumstances. This SSA itself has recognized what a tough situation this is. In a memo written in 2010, SSA’s Chief Administrative Law Judge (ALJ) noted that it is often uncertain whether SSA “will find a person who applies for unemployment insurance benefits ultimately to be disabled under our rules, and our decision-making process can be quite lengthy. Therefore, it is SSA’s position
The Robinsons: Endowing Their Values
D
espite Peach Robinson’s determination that MS would not frame her future, it has – in many positive ways. “Once the diagnosis sank in, Peach took immediate aim at
cousins and a grandmother – enough people that the Robinson family represented half of the volunteer force at the Appleton walk site that year.
Peach and Tom Robinson joined to Lawry Circle to sustain funding for researchers and education well into the future.
MS and sought out as much information as she could,” explained her husband, Tom. “Since there were not many treatments (in 1975), Peach turned to the National Multiple Sclerosis SocietyWisconsin Chapter for information.” “I first joined the Chapter’s self-help group in Green Bay and before long my entire family was involved in Walk MS,” Peach remembered. By 1992, that included Peach and Tom’s three sons along with their brothers, sisters, aunts, uncles, nieces, nephews,
Three years later, the family set out to create the Green Bay Walk MS to raise even greater awareness in the area. Peach joined the Board of Trustees for the Wisconsin Chapter soon afterwards, and also was named MS Mother of the Year for her on-going fight against the disease.
Recently, Peach and Tom decided to create a legacy that would endow their family values and continued commitment to finding a cure for MS. In doing so, they joined the National MS Society’s distinguished Lawry Circle, a program that recognizes people who remember the Society in their estate plans
through a bequest, gift annuity or other deferred gift. Because the gifts represent an expres-
“Being members of the Lawry Circle means that we are part of the cure, even after our lifetimes.” sion of lifetime commitment, the Lawry Circle has no minimum gift level and membership is for life. “The Lawry Circle is the ultimate way to give back and sustain the funding for future researchers and educational programs,” Peach said. “People need to be aware that the region is a leader in stimulating the global research effort. “Although there are many worthy organizations out there, the National MS Society is one of the best and is very important to us. Being members of the Lawry Circle means that we are part of the cure, even after our lifetimes.”
With the launch of the Society’s research fundraising initiative, there has never been a more promising time to intensify your commitment to STOP disease progression, RESTORE lost function and END MS forever. For information on including the National MS Society in your estate plans and becoming a Lawry Circle member, contact Denise Jendusa at denise.jendusa@nmss.org or 262-369-7166. MS Connection | 23
Dr. Natasha Frost Leads Dean’s MS Clinic Team
T
he success of the clinic really takes all of the people here knowing our patients, and each providing their own special area of expertise,” said Dr. Natasha Frost about the MS Clinic at the Dean & St. Mary’s Outpatient Center in Madison. “It takes all of us as a team to take care of people well. “When I joined Dean, from the onset they were very committed to making a multidisciplinary MS Clinic work and to finding people who could help fill all the little niches or special areas that are unique to MS,” she said. The
MS Clinic team is led by Dr. Natasha Frost, and includes a number of other general neurologists who also treat MS. Many of the team members are certified in MS treatment, including physician assistant Jessica Szpak, two nurses and two physical therapists. Dr. Frost completed her residency at the Cleveland Clinic, and her multiple sclerosis fellowship at the Mellen Center for Multiple Sclerosis Treatment and Research through the MS Society Sylvia Lawry Physician Fellowship Program. During this time, she also completed a
master’s in clinical research at Case Western Reserve. Of her training she said, “I had the opportunity to take
“It really takes all of us as a team to take care of people well.” care of a lot of patients, so I had a lot of exposure to clinical care for a diversity of people with MS. People came from all over the world to be treated. There were cases that were unusual or atypical for MS.”
Dean Clinic staff members work as a team to care for those with MS. Back row, left to right: Mark Cecil, RN; Curt Campbell, PT, MSCS; Susi Wolff, RN, MSCS; Julie Lyne, PT, MSCS; Robin Chisholm, LPN, MSCS; Wendy Hall, Program Development. Front row, left to right: Mary Nielsen, RN; Kim Busch, Patient Care Assistant; Cynthia Heitke, RN; Dr. Natasha Frost, MS Program Medical Director; Jessica Szpak, PA-C, MSCS.
MS Connection | 24
Her experience in Cleveland had other benefits, too. She explained, “The Cleveland Clinic was a good model for helping figure out how we wanted to develop the MS Clinic in Madison, and the services that were really important to incorporate into the way we were going to do things.”
Szpak agreed. “I like to establish relationships and follow patients long term,” she said. “We work very well as a team.”
The clinic includes a patient resource center, on-site 3T MRI, an area for physical therapy, and a dedicated infusion room. “We’ve tried to make sure that we’re treating the whole person,” she said. “We developed separate bladder and bowel visits, spasticity treatments, and on-site therapy services. We’ve tried to keep everyone’s care right here within the clinic when we can.”
“I think that’s a really important part of our clinic, because it opens up a whole other avenue of options to people who maybe haven’t benefited from, or haven’t been able to tolerate the Physical therapist and MS Certified Specialist therapies that are Julie Lyne works with patients on site at the available,” Dr. Frost MS Clinic. said. “They’re not also do outreach in Beaver necessarily right for everybody, but for some people Dam. Dr. Frost also goes to the Dean Clinic at St. Claire being able to participate in hospital in Baraboo. They also a research trial is a good both volunteer at the Benevooption.” lence Specialist Project, a free specialty care clinic that is run The clinic also puts together a through the Dean Foundation. patient education series, with topics based on feedback from Team members at the MS a patient advisory group. Past Clinic participate in Walk MS: topics have included mindfulMadison. “I love it because ness training, new therapies, it’s a really great opportunity adaptive fitness and diet and to see our patients outside of nutrition in MS. clinic with their families,” Dr. Frost said. “It’s a totally Dr. Frost and Szpak work different and upbeat situation. primarily at the Dean St. Rain or shine, we all try and Mary’s outpatient building do it every year.” Madison. However, they both
When patients need to be referred, they are sent to specialists who have an interest in MS. Physician assistant and MS Certified Specialist Jessica Szpak said, “We have people in different departments that we refer our patients to, so they are very familiar with our patients and their needs.” Dr. Frost added, “I hope our patients really feel like they know and are comfortable with the group of people that are helping manage their MS.”
Patients can participate in clinical trials through the Dean Foundation.
MS Connection | 25
Wisconsin Chapter Clinic Visits Meet with Wisconsin Chapter representatives at these scheduled clinic visits: • Aurora Marinette Menominee Clinic, Marinette: 2nd Thursday of each month • Marshfield Clinic MS Center, Marshfield: 3rd Tuesday of each month • Regional MS Center, St. Luke’s Medical Center, Milwaukee: 1st Monday, 2nd Thursday, 3rd Wednesday, and 4th Tuesday of each month • ProHealth Care Neuroscience Center, Waukesha Memorial Hospital, Waukesha: 4th Tuesday of each month • ProHealth Care Oconomowoc Physician Center, Oconomowoc: 3rd Friday of each month • UW Hospital and Clinics Neurology/MS Clinic, Madison: 4th Wednesday of each month. NOTE: Subject to change based on clinic needs.
Questions About MS? Call an MS Navigator Because no one should face MS alone, the MS Navigator information hotline is available to take your calls. Staffed by MS experts, MS Navigator provides personalized service, up-to-date information and practical resources and referrals.
Call MS Navigator 1-800-344-4867 7 a.m. to 6:30 p.m. CST, Monday through Friday
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Correction: the Spring issue of MSConnection misidentified Sprocket Rockets as a corporatesponsored team; they are actually a team funded entirely by family and friends.
MS Connection | 26
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Wisconsin Chapter Calendar of Upcoming Events Teleconference MS symptoms on bowel and bladder July 9
Generation Optimistic Alterra at the Lake Milwaukee August 16
MS Research NOW Speaker Series Green Bay/De Pere September 15
Bike MS: TOYOTA Best Dam Bike Ride August 4 - 5
MS Research NOW Speaker Series Milwaukee September 8
Challenge Walk MS September 21 - 23
Teleconference Spasticity August 13
Teleconference “MS What a Pain” September 10
Self-help group facilitator Training September 29 Please visit wisMS.org for the latest listing of Chapter activities and Community Events.
How We Spent Our MS Vacations “It’s hard to believe Sally and I will be walking in our fifth Challenge Walk MS this September. Over the past four years, we’ve come to realize that the ‘walking’ part was easy – except when training in the summer heat and humidity made my MS symptoms rage. The ‘challenge’ for us was the fund-raising. I feel we’ve learned so much about having an open mind when it comes to raising cash for the cause. We’ve had some creative ideas that really saved our butts and some that have really bombed! The most amazing aspect on this journey has been that the money always came in – often times from totally unexpected places. We believe making our biggest connection by turning it over to God has so much to do with our success.” - Lori Kolosowsky Visit the Challenge Walk MS participant blog to read more from Lori Kolosowsky’s “How We Spent Our MS ‘Vacations’” and learn her tips for fund-raising success. New bloggers are always welcome. Contact Dawn Thaves at (262) 369-4403 or dawn.thaves@nmss.org.
Challenge Walk MS veterans like Lori Kolosowsky are blogging about their experiences.
Better yet, sign up today to join Lori and the more than 120 participants who have already registered for the 5th annual Challenge Walk MS, a three-day, 50-mile experience that will test your strength and spirit while giving you plenty of reasons to celebrate. Set in beautiful Door County at the near peak of fall colors, you’ll enjoy a weekend focused on inspiration and accomplishment. Visit www.challengewalkMSwi.org for details. MS Connection | 27
Non-Profit Organization U.S. Postage A Publication of the Multiple Multiple Sclerosis Society-Wisconsin Chapter A Publication ofNational the National Sclerosis Society-Wisconsin Chapter
1120 James Drive Suite A Hartland, WI 53029
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wisMS.org • Toll Free 1 800 242 3358 • 262 369 4400
The event will challenge you. The experience will change you.
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It’s as much about the journey as it is the destination. Challenge Walk MS sets a high bar with a three-day, 50-mile* walk and a $1,500 fundraising minimum. But it rewards you at the same level with an allinclusive inspirational destination getaway in Wisconsin’s scenic Door County, where you’ll be surrounded by friends both new and old. Call 1-800-242-3358 or visit www.challengewalkMSwi.org for details and to register. * two-day, 30-mile option also available