Imagine Wisconsin Without MS
Activists Meet in Madison Request Research Funding
Wisconsin Board of Trustees
Michael Lutze, Vice Chair Ernst & Young Kenneth Minor, Vice Chair Sonic Foundry, Inc.
Jess Levin Bank of Elmwood Karen Minor Community Advocate Bruce Olson The Marcus Corporation Shelley Peterman Schwarz Meeting Life’s Challenges
Patricia Ackerman, Treasurer A.O. Smith Corporation
David Raysich Plunkett Raysich Architects
Robert Sowinski, Secretary Diversified Insurance Services, Inc.
Patricia Raysich Community Advocate
Colleen Kalt, President & CEO National MS Society Wisconsin Chapter Carrie Raymond Bedore Carrie Raymond Bedore, LLC
David Rodgers Briggs & Stratton Corporation
Alyson Zierdt, Chair Community Advocate Martin McLaughlin, Past Chair Reinhart Boerner Van Deuren, S.C.
Robert Buhler Open Pantry Albert Elser II Community Advocate Robert Engel M&I Bank
James Rose Virchow, Krause and Company LLP John Steinhafel Steinhafels Furniture Maureen Steinhafel Community Advocate Jeffrey Steren Steren Management/McDonald’s Robyn Turtenwald Community Advocate
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.
©2009 National Multiple Sclerosis Society - Wisconsin Chapter
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Be a Research Hero What a great group of folks we’ve got pictured on the cover! They’re just 48 of the 140 individuals who met at the Capitol in Madison on March 5 to participate in Legislative Affairs Day. Outfitted predominantly in bright orange, the group made quite an impact as they encouraged Wisconsin legislators to reduce insurance co-pays and support funding for MS research. Of course research is the key to creating a world free of MS. And that’s why proceeds from our MS fundraising luncheons, planned for June 17 in Milwaukee and June 18 in Madison, will benefit the National MS Society’s Promise: 2010 research initiatives. As you may know, the four Promise: 2010 research topics were identified by experts at the National MS Society because they hold significant promise. They are: The MS Lesion Project, the Sonya Slifka Longitudinal MS Study, Pediatric MS Centers of Excellence and Nervous System Repair and Protection. We are unabashedly proud of the role the University of Wisconsin-Madison and Dr. Ian Duncan are playing as part of the international team tapped by the National MS Society to study Nervous System Repair and Protection. We believe these scientists will find a way to reverse the damage that MS causes and restore function to those who have been living with the disease. In fact, it is because of our strong belief in research that our Chapter committed $2 million to support Promise: 2010. At this time we have just $300,000 remaining on our goal – and you can help. I’m inviting you to make a donation and become a Research Hero for MS. Of course every donation – regardless of size – makes you a Research Hero in my book. But please consider contributing $100 and attending our MS Luncheon – or better yet, purchase a table (and ask your company to sponsor one, too) for $1,000. Working together we will reach our fundraising goal. Working together we will achieve what today we can only imagine: Wisconsin without MS.
Colleen G. Kalt President & CEO
MS CONNECTION: Spring 2009
6th Annual Legislative Affairs Day
Activists Ask for Research Funding, Reduced Co-Pays Arriving by car and bus from around the state, about 140 individuals with MS – their caregivers, friends and family members – came to Madison to enthusiastically request funding for MS research and voice their concerns about drug co-pays. The event was the Wisconsin Chapter’s 6th Annual Legislative Affairs Day at the State Capitol on March 5. Many were first-time participants who wanted an opportunity for a face-to-face discussion with their legislators. Small groups met with their state senators and representatives to request support for limiting the ability of insurance companies to impose increased co-pays on MS drugs. The legislators, After participating in educational sessions, MS activists make many of whom were not aware of the serious their way to the State Capitol. financial burden the co-pays impose, welcomed tax check-off program that currently provides financial their constituents and the opportunity to learn about assistance for MS clients. At this time, Wisconsin does MS. The tier system (4 being the highest tier), allows not provide funding for MS research.
Christopher Reed, left, accompanies Kelly Davis to meetings at the Capitol. insurance companies to charge patients a percentage of the cost of drugs – currently 20- to 33 percent – versus a traditional fixed co-pay amount of $10- to $50. A number of the day’s participants shared their monthly medication costs, some running as high as $3,000. Additionally, MS advocates also asked their legislators to consider identifying creative options to put dollars into the MS research pipeline. This could be similar to the successful Make A Mark for MS income
Morning Speakers Prompted Lively Discussions Before their meetings at the Capitol, attendees gathered at the Concourse Hotel to hear from Representative Jon Richards (Milwaukee), chairman of the Health and Healthcare Reform Assembly Committee and Representative Tom Nelson (Kaukauna), Assembly Majority Leader. Dr. Loren Rolak, neurologist and founder of Marshfield’s MS Clinic gave an update on MS research in Wisconsin. During lunch, participants heard about how they can achieve legislative success through activism from Alice O’Connor, a government relations lobbyist at Dewitt Ross & Stevens. Jeffrey Gingold, a local author and National MS Society activist rounded out the range of speakers. Sign Up for Action Alerts Your voice, your story, your action can be the catalyst for change. Sign up today to receive informative Action Alert emails from the Wisconsin Chapter by contacting kim.kinner@wisMS.org or calling 262-369-4421.
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April 19: Brown County
walk to create a world free of MS
register or volunteer wisMS.org or call 800.242.3358 4
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April 26: Chippewa Valley-Eau Claire Fond du Lac County Fox Cities La Crosse - Seven Rivers Racine/Kenosha Sheboygan County Waukesha County May 3: Madison Summerfest Grounds North Central Wisconsin NEW VIRTUAL WALK at wisMS.org
Eleven Years Into MS
A 30-Something Talks About His Journey By Tish Robinson
Scott Hanson still works In 1998, Scott went hard every day. He likes working to a walk-in clinic because the job he does makes a in Butte where a difference in people’s lives. But battery of tests was the hard work he relished back performed before in 1997 triggered a difference in they sent him to a his life that he’ll never forget. neurologist. After a Scott recalls that in whole-body MRI, December 1997 he was living Scott learned he had and working as a union Relapsing Remitting organizer in Kalispell, Montana. Multiple Sclerosis. At age 26, he was devoted The neurologist to a project that sometimes offered some consumed 80 hours of his time treatment options each week. Not surprisingly, but he could not eating and sleeping ranked low promise benefits. on his “to do” list. At the end He told Scott the of an intensely difficult threetreatments might week period, Scott took his seat help, but there was Scott Hanson, pictured with his wife, Abbey, was at a meeting. Someone at the some uncertainty diagnosed with MS in 1998 table was stomping their feet. about their safety. Scott’s boss looked at him and In addition, the told him to “knock it off” as it was disruptive. treatments were very expensive. Scott decided to skip Scott realized that even though he was stomping treatment at that time. his feet, he could not feel them hitting the floor. It’s how you choose to live with it (MS). His (Scott’s) Attributing it to stress and philosophy is that if you bring enough people together, his intense work schedule, whatever it is, you can change it. Scott went home to Wisconsin - Abbey Hanson for a few weeks. He relaxed a bit and the symptoms subsided. Then it was back to Montana and his intense By 1999 Scott couldn’t walk, having lost work schedule. Scott, like many people in their 20s, did most of the function in one of his legs. He could not think much about his health – he even wondered not stand on his own. At that point, Scott decided if he actually needed health insurance. As is typical of to modify his daily activities. He reduced his young, healthy people, he felt invincible as he dove into weekly work hours -- going from 80 hours a week his career at a peak time of his life. to around 50. He started to become aware that he needed to eat better and get more sleep. He made More Symptoms and a Diagnosis overtures toward a more managed lifestyle. Scott Within a few months, Scott experienced additional also agreed to begin treatment with one of the MS symptoms. He wasn’t feeling much sensation in his legs medications available at that time. “I have no regrets,” and he fell down a flight of stairs. As he describes it, he said Scott about not starting medication sooner. felt “weird things” happening to his body. “However, if I was diagnosed today, knowing what TOLL FREE NUMBER 1 800 242 3358
I know, I would immediately use one of the diseasemodifying drugs.” Scott’s health gradually improved. He took a couple of weeks off and in June 1999, Scott decided to try “walking.” He says he actually limped. “I think I cried a little afterward because I knew I wasn’t dead yet,” he says. He went back to work the next day, and gradually got a little better. In 2001, still in Montana, Scott began to think his decline was accelerating. By September he got an interferon prescription. A few weeks after starting the medication, he had a bad episode that led to him quitting his job and moving back to Wisconsin to be closer to his family.
Abbey says they try to be very active. “There is nothing we won’t try,” explains Abbey. “It might not work out as well as we’d hoped, but there is no reason not to do it.”
Scott Becomes an MS Activist and Patient Advocate Scott realized he now had the time and “the desire to advocate for me and all people living with MS. I felt it was my responsibility to advocate for MS patients because I still can,” he explained. Scott has steeped himself in the Wisconsin Chapter’s multitude of advocacy and fundraising activities, including Walk MS and Bike MS: Best Dam Bike Ride. Returning Home to Wisconsin Abbey recalls After returning to Wisconsin, that she first saw Scott’s Scott made more lifestyle advocacy in action at modifications. As he felt better, he a small Circle of Hope included a half-mile daily run which meeting in Madison. he eventually worked up to a full mile. “He was talking to the He got a new job and along the way, group about what they he met and married his wife, Abbey. could do about getting Right now, Scott says he is in the income tax checkreally good health. He and Abbey off passed and how try to eat freshly prepared meals at they could help make home. Scott’s given up fast food political changes.” She meals. He tries to focus on eating a says it was an important variety of fruits and vegetables, very moment for her because Abbey and Scott Hanson rode in Bike little red meat and a big variety of nuts. it gave her a first-hand Scott laughs as he says he especially likes MS: Best Dam Bike Ride in 2008. appreciation for Scott’s the ones covered in chocolate. To stay in commitment to advocating shape, Scott goes to the gym to work out. As far as on behalf of MS patients. “He is really effective at supplements, Scott takes a daily multivitamin, fish oil making people think about how they can be involved. and borage oil. That is powerful for people,” she adds. Much of Scott’s success, according to Abbey, has Scott and Abbey Lead an Active Life to do with him having a really good attitude and Both Abbey and Scott enjoy outdoor activities and outlook. “It’s how you choose to live with it,” she include as many as they can in their life. Scott laughs as believes. His philosophy is that “if you bring enough he recalls the year Abbey bought him a pair of ice skates people together, whatever it is, you can change it.” for his birthday. “I thought this was the gutsiest, coolest thing to give a guy with MS!”
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20s/30s Celebrate Life!
Program Provides Offline Networking for Adults with MS
20s/30s Celebrate Life! groups meet quarterly. Participating in the February 26 program held at Club Paragon were, from left, Chantelle Walker, Kim Muszynski, Chad Harris and Jim Muszynski.
While there’s plenty of online networking available for young professionals living with multiple sclerosis, limited opportunities exist for that age group on a person-to-person basis. Fortunately, 20- and 30-somethings in the Milwaukee and Madison areas have access to the Wisconsin Chapter’s popular 20s/30s Celebrate Life! program. Groups meet quarterly for social, educational and activity-based get-togethers. Spouses, a significant other or caregiver are invited to attend. Discussions tend to cover everything from work to family to MS. For more information – or to discuss starting a group in your area – email the 20s/30s Celebrate Life! program coordinator, Meghan Schnabl, at meghan.schnabl@wisMS.org. Or call 262-369-4400 or 1-800-242-3358, Option 2. Paid Advertisement
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Special Book Excerpt
Author Continues Focus on Cognitive Challenges of MS national television interviews, much less the undesired stress on my MS symptoms. The next week, a camera crew was at our home to film candid interviews with me, my wife, Terri, and our girls, Lauren and Meredith. The questions were blunt, while the straight answers were emotionally revealing and draining for all of us. After five hours of taped conversations and re-enactments, I was physically fatigued, hobbled by my partially numb left leg and tilted equilibrium, but those weren’t the only MS hits to my body. When the taping was finished, I sat on the couch, mentally fried and unable to clearly string two thoughts together. My day was sliced short. As my body began to tremor and my Chapter Excerpt: Leading by Open Example legs buckled, Terri held my arm as I gingerly climbed A Conversation with Montel Williams the stairs. “Would you “Will you be up for come to New York eating a bit later?” asked to be on the show Terri. Perhaps sensing that my with Montel?” thoughts were also frayed, she asked Stacey, one understood the head shake of the producers “no.” MS landed me in bed for The Montel before 8:00 p.m. on a weekend Williams Show. night. Although the film crew’s “He would like computers, cameras, and flood to meet you and and spot lights hadn’t blown discuss your book a fuse in our home, the heat about cognitive MS Wisconsin resident Jeffrey Gingold appeared on The from the lighting and interview symptoms.” Caught Montel Williams Show to discuss his first book, “Facing stress had tripped my MS-loaded frozen like a deer the Cognitive Challenges of Multiple Sclerosis.” nerve connections. When Terri in the headlights of asked me the next day about my interview answers, I an oncoming truck, I was stunned by the question and was stumped and blank. It was unnerving not being quickly glanced at the caller ID. Discovering the New able to recall what I might have said on camera, but I York City telephone number on the screen, I snapped trusted Montel’s editors to use the coherent statements out of my trance and quickly agreed to the request. or piece them together. My first book, Facing the Cognitive Challenges of It was a draining interview about my book dealing Multiple Sclerosis, had only been released a few weeks with the first-person impact from MS cognitive earlier, and although I was pleased with the very kind impediments – and my brain shut down. This is one and enthusiastic book reviews, I hadn’t thought about The Wisconsin Chapter is pleased to present the following excerpt from Jeffrey N. Gingold’s latest book, “Mental Sharpening Stones: Manage the Cognitive Challenges of Multiple Sclerosis.” A Wisconsin resident, MS activist and speed skater, Gingold is also the internationally-acclaimed author of the award-winning book, “Facing the Cognitive Challenges of Multiple Sclerosis.” Regarding his latest book, Joyce Nelson, President and CEO of the National MS Society writes: “Mental Sharpening Stones offers valuable realworld advice both for people with MS-related cognitive difficulties and for those who love them. Richard Cohen, Montel Williams, Colorado Chief Justice Mary Mullarkey and others speak frankly about the steps they take every day to manage this common MS symptom.” Gingold donates all royalties from the sale of “Mental Sharpening Stones” to MS research and education.
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of the reasons that I was compelled to retire as an attorney. I was unsure about what was asked and how I responded; MS is a constant lesson about my limits of recall and thinking fatigue. The irony of the interview topic and result was obvious as I began to wonder about the potential fallout from the New York trip. There was no cause to stress about preparing for the show. Self-inflicted stress serves no purpose other than to further exacerbate my MS symptoms and never provides answers to any real concern. I needed to focus on the discussion for the show, and Montel would take care of the rest. After all, it wasn’t his first television show. Prior to the show, his staff called every day to check in and answer any questions. They seemed to understand my need for repetition of details, perhaps to ensure that I showed up in the right city and at the correct television studio. As Terri and I waited backstage in our “Green Room,” which is actually green, I continued to review my written talking points. As I glanced through the few pages of handwritten notes, I realized that my scanning was as vacant as the empty lunch basket sitting on the table next to me. Even though I had been living with cognitive disability, it wasn’t always simple to quantify the experience in sound bites. Royalties from Gingold’s second There was a variety of chocolate spilling out of the basket, so I grabbed a handful book “Mental Sharpening of Hershey Kisses. Stones,” are donated to MS “My brain is full and closing,” I said. research and education. “Maybe a sugar rush will help.” “Skip the notes,” said Terri, “let’s just talk through some of their sample questions.” There was no way to know what Montel would ask us, so why worry about it, but I wanted to give direct answers about MS cognitive overload and not waste the opportunity. Working off my notes had added a difficult step to the discussion, so I put down the pages and never looked at them again. I found that my mind was trapped in analyzing the written question and unable to quickly move into a coherent response. Listening to a question was much easier and allowed me to step over a cognitive pitfall. Our private, green, guest room was comfortable and since we had several hours before the taping, we took turns bouncing interview questions off each other. Short and detailed answers would work for me, even if the chocolate ran out.
MS Doesn’t Mean Losing Your Mind After an Arctic Blast with wind chill temperatures of up to 40 degrees below zero caused the cancellation of the original January program in Wausau, internationallyacclaimed author Jeffrey N. Gingold is warmed up and ready to address the audience for his popular cognition seminar. Titled, “MS Doesn’t Mean Losing Your Mind,” the free program will take place April 29 at Northcentral Technical College starting at 5:30 p.m. Space is limited. Advance reservations are encouraged and can be made by calling 1-800-242-3358, Option 2 or visiting wisMS.org. The Wausau seminar is supported by an educational grant from Biogen Idec. Seminar attendees will have the opportunity to purchase a copy of Gingold’s latest book, “Mental Sharpening Stones,” and have it autographed by the author. Gingold donates all royalties from the sale of “Mental Sharpening Stones” to MS research and education. This program is brought to you in part by an unrestricted educational grant from Biogen Idec and a sponsorship from EMD Serono.
Reprinted with permission from, “Mental Sharpening Stones: Manage the Cognitive Challenges of Multiple Sclerosis,” written by Jeffrey N. Gingold and published by Demos Medical Publishing. Available at Amazon.com and most major book stores, as well as from the Wisconsin Chapter lending library.
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Let’s Do the Same for Spring Events
Snowmobile, Birkie Bring Wintertime Fundraising Success Between January’s MS Snowmobile Tour and February’s American Birkebeiner, the Wisconsin Chapter secured nearly $300,000 in fundraising revenue. That’s more than $16,000 for each of the 18 inches of snow that fell in Milwaukee during those winter months. Each of these enthusiasts donated $2,500 or more to MS research for the opportunity to join Olympian Bjorn Daehlie in an exclusive ski session.
It is early morning and spirits are high as participants in the 26th Annual MS Snowmobile Tour hit the trail.
MS Snowmobile Tour The 26th Annual MS Snowmobile Tour was held January 29 through February 1 in Wabeno and attracted 132 passionate participants. Chapter friends and long-time partners Forest County Potawatomi sponsored the event, as did Rockford Silk Screening and the Association of Wisconsin Snowmobile Clubs (AWSC). In addition to these generous organizations, the MS Snowmobile Tour benefited from the commitment of individual fundraisers, staff and volunteers – including volunteers from Forest County Potawatomi Health and Wellness Center. And while final figures weren’t available at press time, it appears the MS Snowmobile Tour will generate at least $190,000. Final figures will be posted at wisMS.org. In the meantime, congratulations and thank you to all who worked so hard to make the 2009 MS Snowmobile Tour such a success.
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American Birkebeiner Considering the event had raised $84,000 over three years for previous nonprofit partners, imagine our excitement when we learned that the Wisconsin Chapter’s first partnership with the American Birkebeiner generated more than $105,000. Tremendous thanks go to Dr. Ian Duncan, who not only master-minded the event but also brought Olympic cross country ski legend Bjorn Daehlie to the Birkie. Daehlie’s mother has MS. Thank you to all the participants, fundraising teams and contributors who made this first-year event such a success. The cross country ski marathon was held February 19-21 in Cable and Hayward.
Jane Schmieding, a Wisconsin Chapter volunteer, participated in the first ever Sit-Ski Demonstration at the Birkebeiner. The 3K/5K event was presented by Becker Law, a long-time Chapter sponsor.
Walk MS, Bike MS, Challenge Walk MS
Get Ready to Walk, Ride and Roll in the Dough for MS It’s true! Even if you haven’t yet signed up for one of the Wisconsin Chapter’s 11 exciting Walk MS sites, you can still register. The same goes for our other marquee special events – Bike MS: Best Dam Bike Ride and Challenge Walk MS. What’s more, you can also recruit your co-workers, family and friends to support these special events – either by joining your team, making a donation, volunteering or even participating as a virtual walker or rider. NEW! Virtual Walk MS and Bike MS That’s right; this year even if you have a conflict with the date of one of the Walk MS sites or Bike MS, you can still be part of the movement. Visit our web site, wisMS.org, and you’ll find complete details about signing up as a virtual walker or rider. There’s never been a better or more important time for you to participate in a Wisconsin Chapter special event. Together we will accomplish what today we can only imagine: Wisconsin without MS. Finally for Walk MS participants: Don’t forget to turn in your donations as soon as you receive them. That way they’ll immediately be credited – giving you and your team members a chance to see your online fundraising thermometer rise! For more details on special events, please call 262-369-4400 or 1-800-242-3358, Option 2. You can also email info@wisMS.org.
Walk MS April 19: Brown County April 26: Chippewa Valley, Fond du Lac, Fox Cities, La Crosse-Seven Rivers, Racine/Kenosha, Sheboygan County, Waukesha County May 3: Madison, Summerfest Grounds, North Central Wisconsin (Wausau) Bike MS: Best Dam Bike Ride August 1-2 • Pewaukee to Whitewater to Madison • One- and two-day options with 62.5, 75 or 100 mile routes • Fully supported event includes meals and overnight accommodations Challenge Walk MS September 18, 19 and 20 • Door County • Fully-supported event including lodging, meals
Putt One In for MS
U.S. Bank Championship Tickets On Sale, Proceeds Benefit Wisconsin Chapter The National MS Society-Wisconsin Chapter is proud to partner with the U.S. Bank Championship for their 2009 Charity Ticket Program. The region’s only PGA Tour stop, the U.S. Bank Championship will take place July 15-19 at Brown Deer Park Golf Course in Milwaukee. Ticket Proceeds Benefit the Wisconsin Chapter When you purchase your U.S. Bank Championship tickets directly from the Wisconsin Chapter, 100 percent of the proceeds are donated to the Wisconsin Chapter. Tickets are just $20 each and include single-day admission, free parking and access to food, drinks and entertainment. There is no limit on the number of tickets you can purchase, but remember: Tickets must be pre-ordered for proceeds to benefit the Wisconsin Chapter. Order your tickets today by contacting Shannon Stricker at the Wisconsin Chapter at 262-369-4400 or 800-242-3358, Option 2 or email shannon.stricker@wisMS.org. TOLL FREE NUMBER 1 800 242 3358
Of course we need to do more than imagine Wisconsin without MS. We need to make it happen. But how do we do that?
We want everyone buzzing about MS research. Why, because multiple sclerosis is a big problem in Wisconsin. Even the most conservative estimates show 1-in-500 Targeted Research residents have the disease. Compare that to Texas, where To find a cure, we must fund research. the number is 1-in-10,000, and you begin to see what That’s why the National MS Society funds more we mean. MS research worldwide than any other nonprofit You’ll find individuals with MS in every single organization. One of the successful research strategies county of Wisconsin. Drill down a little further and utilized by the National MS you’ll hear stories of communities, such as West Bend, Society is called targeted where 1-in-260 has MS. Look a little deeper still, and research. Simply stated, you’ll meet families such as the Kelleys from Mequon, targeted research works where six of its members have MS. like this: The National But of course there’s more to Wisconsin’s MS story MS Society’s than numbers. scientific What’s it like to live with MS? Dr. Steven Hauser, advisors one of the world’s leading MS researchers and identify highly neurologists, puts it this way: “MS is a cruel disease. It’s promising areas probably one of the cruelest diseases in neurology. that are ripe for And the unpredictability is part of the cruelty.” With exploration. MS you never know when and to what degree symptoms They invite will strike. One day you’re feeling pretty good. The next the world’s day you can’t walk. most qualified In large part because MS is such a complicated investigators disease, it’s also incredibly expensive. Add up the doctor to compete for bills and medication costs – combine that with lost funding. The selected wages – and the average annual financial impact for scientists then focus their an individual living with MS is $57,000. That’s a attention in areas that could daunting lead to a cure. number to Time and The National MS Society funds wrap your again the National more MS research worldwide than mind around MS Society’s in good any other nonprofit organization. targeted research economic approach has born times, much fruit. The current estrogen (estriol) less what we’re dealing with today. clinical trial, for instance, is a direct Now, take a minute and imagine Wisconsin result of the Society’s targeted research without MS. Beyond kissing good-bye the estimated initiative in Southern California on gender differences in $600 million statewide financial burden of MS, we MS. What was targeted research in the past – exploring would see: disease protection offered by pregnancy – is now a large, • A dad who doesn’t have to wonder if he’ll be able to definitive trial that could lead to a new oral treatment walk his daughter down the aisle on her wedding day. option for women with MS. • A cyclist with Olympic aspirations who doesn’t have to give up her dream because she’s lost her vision. Research in Wisconsin • A child of a parent with MS who doesn’t have to be “I think they’ll find a cure, and I think they’ll find it a caregiver, or worry that she’ll be the next to hear in Wisconsin.” the words, “You have MS.”
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That’s what one optimistic individual living with MS In addition to laying the groundwork for in Wisconsin believes. However, as Wisconsin Chapter clinical trials in 2010, Dr. Duncan and his President and CEO Colleen Kalt says, “We don’t care international colleagues are focused on the question: where the cure comes from – we just want it to get What if we could reverse the damage that MS causes, here, fast.” But considering all of the exciting research restoring function to those who have been living with that is taking place in our state – 10 different studies the disease for years? That’s a question we guarantee with $6.4 million in funding from the National the estimated 10,200 individuals living with MS MS Society – great achievements in MS treatment are in Wisconsin want answered. And that’s why the expected from the Badger state. Wisconsin Chapter is inviting you to help us build a Consider the University of Wisconsin-Madison: buzz for MS research. Besides being recognized as the epicenter of stem cell research, What if we could reverse the damage that UW-Madison is participating in MS causes, restoring function to those who Promise: 2010, a targeted research initiative of have been living with the disease for years? the National MS Society. Promise: 2010 is focused on four areas: Build a $300,000 Buzz for MS Research • First, because Specifically we want to build a $300,000 buzz for children are the fastestMS research. growing population According to the National MS Society, there has being diagnosed with never been a more exciting or hopeful period in the MS today, Promise: history of MS research. Yet, for the first time in 10 2010 has created a years the National MS Society has approved research network of Pediatric MS projects it cannot fund – 45 to be exact. Instead of Centers of Excellence. working to find a cure, these scientists are literally • Second, Promise: 2010 “standing by.” scientists are engaged in the That’s why the Wisconsin Chapter stepped up and most extensive attempt ever made a $2 million pledge to Promise: 2010. Thanks to to map and study how MS your support we’re almost there. Our goal for 2009 is to affects the brain. raise $300,000 for research into the cause, treatment and • Third, there is an initiative to cure of MS. study the affects of MS over Be a Research Hero at the MS Luncheon peoples’ lifetimes. You can help us build a buzz for MS research by • Fourth and closest to home, making a minimum $100 donation to attend our teams are working to reverse MS Luncheon (June 17 in Milwaukee and June 18 the damage caused by MS. in Madison). Also ask your company to purchase a UW-Madison is part luncheon table for $1,000. You’ll find complete details of the international “dream team” assembled by the at our web site, wisMS.org, or by calling the Chapter National MS Society to explore how to repair the office at 262-369-4400 or 1-800-242-3358, Option 2. nervous system damage caused by MS. UW-Madison’s Of course every contribution, regardless of the partners in this study are Universities of Cambridge and amount, makes you a research hero. Step up and give Edinburgh, Queen Mary University of London and what you can. Johns Hopkins University. Longtime Wisconsin Chapter Together we’ll do more than imagine Wisconsin friend Dr. Ian Duncan is leading the research effort without MS. We’ll make a big Badger buzz about MS at UW-Madison. He received $3.4 million from the research. And we’ll make it happen. National MS Society for his work – the largest grant ever awarded to a Midwest scientist for MS research. TOLL FREE NUMBER 1 800 242 3358
Empathy Defines the Man
Dr. Khatri Utilizes Whole-Person Approach for Treatment of MS By Tish Robinson
At age 59, Dr. Bhupendra Khatri still has a mentor – the same one he has had since his residency days at the Medical College of Wisconsin when Dr. Michael McQuillen was Chairman of Neurology there. During that time, Dr. Khatri explored new developments in the field of multiple sclerosis -- laying the groundwork for the manner in which he would serve both the science and the patients of MS. Though he is now a renowned leader in the treatment of MS, Dr. Khatri continues to learn both from his mentor (now a clinical professor of Neurology and Neurological Sciences at Stanford University), and the research he conducts at his Regional Multiple Sclerosis Center at Aurora St. Luke’s Medical Center in Milwaukee. Although he is of Indian descent, Dr. Khatri grew up in Kenya. He says he always wanted to be a doctor and eventually studied medicine in Bombay before taking his residency in Milwaukee. Devoted to family, Dr. Khatri took in and raised six nieces and nephews after the Kenyan political climate became unsettling for Indian residents. Dr. Khatri’s empathy for MS patients emerged early in his career. He would spend one Saturday morning each month with a MS family helping them to understand MS and how to cope with what the future might hold. Word of his unique approach to patient care spread quickly which created a greater demand for his specialized, personalized kind of care. The Regional Multiple Sclerosis Center, launched in 2002, functions within the Center for Neurological Disorders at St. Luke’s Medical Center. “We have grown to be one of the largest MS centers in the U.S. serving 4,000 patients,” explains Dr. Khatri. Staff resources include four full-time research nurses, physical and occupational therapists, a general practitioner, a physician’s assistant and Dr. Khatri, a board-certified neurologist whose specialty is MS. Individualized, Comprehensive Patient Care Dr. Khatri uses an old adage that most people have heard as youngsters from caring parents: “You are what you eat.” A lifelong vegetarian, Dr. Khatri believes that not only nutrition, but also exercise,
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nutritional supplements and attitude strongly influence the body’s ability to remain strong and healthy. According to Dr. Khatri, “The healing process can be hastened by exercise.” He counsels his patients on all of these aspects. “We combine holistic therapies with conventional treatments,” he says. “But patients must do their part. Unless they do, it doesn’t work.” He believes that the power of positive thinking and the subconscious mind are important for the success of treatments. Supplements he regards as highly important include Vitamin D and Omega 3. He started recommending Omega 3 and an exercise regimen to his patients more than 19 years ago. In addition, Dr. Khatri began using Vitamin D in his therapy regimen nearly seven years ago. “Vitamin D,” says Dr. Khatri, “is much more linked to MS than we thought.” Plasmapheresis for MS Patients Dr. Khatri is also a proponent of new technology, but only if it provides significant benefit to his patients. One technological advance that he introduced to Milwaukee MS patients nearly 30 years ago is the use of plasmapheresis – a blood exchange process in which the liquid part of the blood is removed while the red cells and a saline/albumin liquid is simultaneously returned to the body. Most recently, Dr. Khatri authored a study published in the February 3 issue of Neurology, the official publication of the American Academy of Neurology, concerning the use of plasmapheresis to filter natalizumab (Tysabri), from the body. According to the research led by Dr. Khatri, plasmapheresis counteracts an unusual, but serious, side effect of Tysabri. The side effect is a brain virus called progressive multifocal leukoencephalopathy (PML). “This virus looks like a multiple sclerosis relapse,” said Dr. Khatri. “It rapidly destroys the white matter of the brain. Now we know exactly how to respond if this virus emerges.” The response is a series of plasma exchanges that filter the drug out of the blood stream, allowing the immune system to recover and fight the virus. Normally, Dr. Khatri says, Tysabri stays in the
body four months. After just three plasma exchanges (completed within a one-week period), the research shows that Tysabri was cleared from the body, halting the progression of the fatal side effect. Dr. Khatri added that the use of plasmapheresis is not limited to removing Tysabari from MS patients – any drug can be removed with the same process. “The significance of this study is great,” added Dr. Khatri.
The New Frontier in MS Research As a medical professional who has dedicated his life to helping find relief for MS patients, Dr. Khatri is excited about the new drugs and therapies that are quickly emerging. What he calls the “new frontier in MS research” involves stem cells and myelin therapies. Scientists know that the myelin covering of nerve cells can regenerate itself. According to Dr. Khatri, the scientific community is very close to making that a reality.
Dr. Khatri and Dr. Duncan to Participate
MS Luncheons Create Buzz, Raise Funds for Research The Wisconsin Chapter is pleased to announce that Dr. Bhupendra Khatri and Dr. Ian Duncan will participate in the Wisconsin Chapter’s Annual MS Luncheons. Dr. Khatri will appear at the Milwaukee MS Luncheon on Wednesday, June 17 at the Pfister Hotel; and Dr. Duncan will join the Dr. Ian Duncan, left, introduces Madison MS Luncheon on Olympian Bjorn Daehlie to the Thursday, June 18 at the UW-Madison research center. Marriott West Hotel. The time is now to find a cure. Help us raise funds for research by attending one of the MS Luncheons. You’ll hear stories of challenge and triumph, stories of inspiration and hope. Stories like Channing Barker’s. Channing was diagnosed with MS three years ago as a 16-year-old high school junior. Currently a sophomore at the University of Arkansas, Barker will share her story Dr. Khatri
at this year’s Milwaukee and Madison MS Luncheons. All guests for the Milwaukee and Madison Luncheons must register and pay the minimum $100 donation in advance. A table is $1,000 and corporate sponsorships are also available. Make your reservation today by calling the Wisconsin Chapter at 262-369-4400 or 1-800-242-3358, Option 2, or visit wisMS.org to secure your luncheon reservation online.
Milwaukee MS Luncheon Wednesday, June 17 Pfister Hotel Madison MS Luncheon Thursday, June 18 Marriott West Hotel
TOLL FREE NUMBER 1 800 242 3358
Wisconsin-Based Clinical Studies Recruiting Participants Researchers recently announced two Wisconsinarea clinical studies. For more details, please contact the clinical study coordinator directly. Bone Density Study Now Enrolling Volunteers Marquette University and Froedtert Memorial Lutheran Hospital are collaborating on a bone mineral density study. Sponsored by the National Multiple Sclerosis Society, the study will require 2-3 clinic visits lasting approximately 1-2 hours each. Volunteer eligibility includes: • Ages 18-55 • Non-smokers • Free from heart disease, high blood pressure, diabetes and other major illnesses. • Women must be premenopausal and not pregnant. • Participants must be ambulatory without aid. • No immediate family history of osteoporosis. • Participants with and without MS will be selected.
Oral Medication Research Study Aurora Health Care is enrolling participants for a clinical research study of an investigational oral medication for relapsing remitting MS (RRMS). Dr. Bhupendra Khatri is the principal investigator on this study. Volunteer eligibility includes: • Ages 18-55 • Confirmed diagnosis of RRMS • Have had at least one relapse in last 12 months
If you’d like to participate, contact Ellen, Jennifer or Alex at 414-288-6257.
For information, contact Tayo Olapo at 414-385-1805.
Send Me to Summer Camp!
Sign Up Now for the 7th Annual MS Camp for Kids Weekly June 21 - Aug. 15 Ages: Summer Resident Camp: 8- to 13-years-old Explorers Camp: 13- to 14-years-old MS Camp for Kids is held at the YMCA’s Camp Minikani in Hubertus. For more information, please contact Jeremy Otte at 262-369-4424 or email jeremy.otte@wisMS.org.
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Health Care, Housing and Employment
Who to Tap to Navigate the Maze of Public Benefits By Meghan Fowler
Are you applying for public benefits, facing changes in employment or retiring? For a person with a disability navigating through the various stages of life, there are many decisions that are critical when it comes to maintaining health care, finding housing, earning income or receiving adequate and proper prescriptions. Knowing who to tap for these or other benefits can be a daunting task. In Wisconsin there are three types of Benefits Specialists who can help: Getting on Benefits Disability Benefit Specialists (DBS) assist people with disabilities between the ages of 18 and 59. A DBS provides cost-free information and counseling about public and private benefits programs and helps people apply for or appeal the denial of benefits. DBSâ€™s are currently available through Aging and Disability Resource Centers (ADRC). Not all counties are covered by an ADRC at this time, but in the future all counties in Wisconsin will be covered. Going to Work Work Incentive Benefits Specialists (WIBS) assist people with disabilities by helping them to understand how their public and private benefits will be affected by working. WIBS give individuals written or oral information about their benefits (cash, medical coverage and continued eligibility), so that they are able to make an informed choice about employment. What About Retirement? Elderly Benefit Specialists (EBS) help people age 60 or older figure out their private or government benefits, including the complex issues around various prescription drug plans. An EBS can provide accurate and current information, suggest alternative ways to secure benefits or appeal denials of benefits, advocate with other parties, explain legal action or other possible solutions and make referrals to an appropriate attorney if necessary.
About Employment Resources, Inc. Employment Resources, Inc. (ERI) practices and promotes innovative services that advance employment opportunities, support personal choices and enhance the well-being of individuals with disabilities across Wisconsin. ERI provides employment and benefits counseling, assistive technology and community outreach services to people with disabilities who are considering or pursuing employment. ERI also offers statewide consultation, training and technical assistance to employers, human service professionals, disability advocates, government agencies and the public regarding disability and employment issues. For more information about ERI please visit our website at www.eri-wi.org or call (608) 246-3444. Finding a Benefits Specialist 1. 2. 3. 4. 5.
To find a Benefits Specialist in your area go to www.eri-wi.org Choose â€œFind a Benefits Specialistâ€? in the upper right-hand corner. Choose the type of Benefits Specialist you are looking for from the list. This will take you to a description of that type of benefits specialist. At the end of each description is a link to find a Benefits Specialist. Selecting this link will take you to a map and/or list of counties. Choose your county to get contact information.
Megan Fowler is a Benefits and Training Specialist with Employment Resources, Inc. She has worked with the organization for more than two years and can be reached by calling 608-246-3444 ext. 230 or emailing email@example.com.
TOLL FREE NUMBER 1 800 242 3358
The Chapterâ€™s first team of MS Community Ambassadors met at the Hartland office on March 7 to participate in an intensive training session. Pictured from left, front row: Michael Sigman, Cindy LeBlanc, Lori Rousseau and Tamera Carey. Middle row from left: Marie Weller, Jane Jacobson, Christina Windberg, Kerry McLaughlin, Jeane Kropp and Tim Mickelson. Back row from left: Keith Johnston, Lori Kolosowsky and Jan Viney. Not pictured: Patricia Raysich
MS Community Ambassadors
Enthusiastically Taking the Movement to the Next Level By Tom Applegarth
Because multiple sclerosis affects people in every community, the Wisconsin Chapter has launched a new initiative, the MS Community Ambassador program. This new grassroots program aims to advance the Societyâ€™s movement for a world free of MS by mobilizing specially-trained volunteers in the community to increase understanding, awareness and education. Community Ambassadors are trained by the Chapter and represent the Society at local functions, speaking engagements, occasional media appearances and more. The first ambassador training was held in March in Hartland. Ambassadors were selected from throughout Wisconsin. Tom Applegarth is a senior at the University of Wisconsin-Whitewater and an intern with the Wisconsin Chapter.
In addition to her role as a Board of Trustees member, Patricia Raysich completed training and is a MS Community Ambassador.
MS Connection is a publication of the National Multiple Sclerosis Society-Wisconsin Chapter. Editor: Cindy Yomantas, Art Director: Amy Malo, Copywriter: Tish Robinson.
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MS Clients Ask: What If I Lose At a Disability Hearing? By Attorney Thomas E. Bush
For many years it was very difficult to win at a hearing an MS case in which the disabling symptom was fatigue. In this series of articles we have explained that a claimant who is turned down initially has the best odds of winning a Social Security disability/ SSI claim at a hearing before an administrative law judge. More than half of all hearings result in the claimant receiving benefits. But what happens if you lose a hearing? Should you give up? If you genuinely cannot work, you should not give up after losing a hearing. Many disabled people who lose at hearings win their cases later in the appeal process. Indeed, the history of MS disability cases is illustrative. For many years it was very difficult to win at a hearing an MS case in which the disabling symptom was fatigue. Because so many of these cases were successfully appealed after hearing denials, most judges today accept the proposition that it is possible for MS fatigue to be disabling even in the absence of significant neurological disability. Even today, though, there are judges who are skeptical that MS fatigue can be disabling. The Appeals Council The odds of success at the Appeals Council, the next level of administrative appeal, are not in a claimant’s favor. The Appeals Council finds disabled only a few percent of claimants who appeal. But about one-quarter of cases are sent back for another hearing by the Appeals Council. The odds of success at the Appeals Council are increased if you have the assistance of an attorney with experience handling Social Security appeals. Federal Court Appeals Although relatively few claimants actually do it,
if the Appeals Council turns down a case, a claimant can appeal to the federal court. The odds of winning benefits awarded by the federal court are miniscule. But a federal court generally sends back for another hearing about half the cases that come before it. When the Appeals Council or federal court sends a case back for another hearing, the odds of winning the new hearing are actually slightly better than the odds were for winning the hearing the first time. Filing a New Application If you do not appeal a hearing denial, unless your “insured status” lapsed before the date of the hearing denial decision, you can file a new application for Social Security disability benefits. If you are financially eligible, you can always file a new claim for SSI. But unless the earlier claim is reopened (which is not something to
count on), you will lose back benefits by filing a new application instead of timely appealing. Tom Bush is the preeminent expert on SSDI in Southeastern Wisconsin. A chapter volunteer for 19 years, Tom was inducted into the 2008 National MS Society’s Volunteer Hall of Fame.
TOLL FREE NUMBER 1 800 242 3358
Wisconsin Chapter News and Notes
This is How We Move It
Wisconsin Chapter Calendar of Clinic Visits Representatives of the Wisconsin Chapter regularly visit several of the organization’s affiliated clinics. During these visits, Programs and Services staff is available to answer questions and share informative literature. The current schedule of clinic visits is as follows: • • • •
Marshfield Clinic MS Center: 3rd Tuesday of each month. MS Regional Clinic at St. Luke’s Medical Center: 2nd Wednesday and 4th Monday of each month. University of Wisconsin Hospital and Clinics Neurology/MS Clinic: 4th Wednesday of each month. ProHealth Care Neuroscience Center Waukesha Memorial Hospital: 4th Tuesday of each month
Hartland Office Landlord Joins the Movement Recognizing the importance of the programs, research and services provided by the MS Society; our Hartland office landlord – Pierson Pelzman, Inc. – agreed to reduce the Chapter’s annual lease payments. Our re-negotiated contract will save the Chapter more than $300,000 over the lifetime of the lease. Such significant savings means more dollars for the MS mission. As part of the new agreement, Roger Pelzman also provided more than $100,000 in office renovations. Special Thanks to Advertising Agency, Street Cance The Milwaukee advertising agency donated its gently-used office furniture to the Wisconsin Chapter. Because of Street Cance’s generosity, seven work spaces were upgraded and old furniture was sold to generate revenue for the MS mission. Information Resource Center The Information Resource Center is available 8 a.m. to 6:30 p.m. CST, Monday through Friday at 1-800242-3358, Option 1. Infoline, a 24-hour counseling service, can be reached by dialing 211.
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In-Kind Contributions Welcomed Every budget-relieving contribution made to the Wisconsin Chapter provides increased opportunities to channel funds into MS research and client programming. Retail gift cards allow the greatest flexibility to purchase items that will have the most impact. Circle of Hope Support Groups Wisconsin has more than 50 support groups and new groups sprout up regularly. For a complete listing including meeting dates, please visit wisMS.org or call 1-800-242-3358. Sharps Collection Facilities The State of Wisconsin publishes a listing of Registered Sharps Collection Facilities. The information is conveniently organized by County and includes addresses plus contact names and phone numbers. The Internet link for the information is: dnr.state.wi.us/org/aw/wm/faclists/SharpsCollection.pdf. Sign Up for the Pick ‘n Save We Care Program A percentage of your grocery purchases will be donated to the Wisconsin Chapter by Roundy’s when you join the We Care program at any of the company’s participating Pick ‘n Save, Copps or Rainbow stores. The Wisconsin Chapter number is 532300. Where Does the Money Go Funds raised by the National MS Society-Wisconsin Chapter are allocated as follows: 87 percent to MS research, client services, programs and financial aid; the remaining 13 percent supports fundraising fees, management and general expenses. Amazing Race Host Showcases MS Phil Keoghan, host of CBS’s The Amazing Race, embarked March 28 on his boldest adventure yet — cycling from Los Angeles to New York — a ride that will average 100 miles per day for a total of more than 3,500 miles, with pit stops in over 30 different cities.
In addition to promoting the television show, Keoghan is participating in rallies hosted by the National MS Society to build awareness for Bike MS and the MS movement. The closest Keoghan will come to Milwaukee is a stop in Chicago on April 25. You can follow Phil on Twitter: twitter.com/ PhilKeoghan as well as join the Ride’s Facebook page. Make GoodSearch Your Search Engine Raising money to support the Wisconsin Chapter’s programs and services is just a mouse click away. Use GoodSearch.com like any other search engine (they’ve partnered with Yahoo to ensure the best results). Each time you do, a contribution will be made to the
Wisconsin Chapter. Get started today: Go to www.goodsearch.com and type NMSS – Wisconsin Chapter into the “I’m Supporting” box. Walk MS Participants: Donate Early, Donate Online Taking a look at Walk MS donations made last year, 70 percent were received the day of the event. This year by donating online or mailing your checks to the Chapter in advance of your Walk MS date, you’ll help us save on processing costs. Donating early or donating online also means you’ll get an accurate snapshot of your team’s performance before you hit the pavement. Have cash? You can also help us save on processing costs by writing a check for the amount of the cash you’ve collected – or making an online donation for the amount of cash you’ve collected. Story Ideas for MS Connection If you have topics you’d like to see addressed in MS Connection, please contact Cindy Yomantas at 262-369-4431 or email cindy.yomantas@wisMS.org.
Area High School Students Support Walk MS Several evenings in January and February, students from Arrowhead High School (pictured at left), Kettle Moraine High School and Brookfield Central High School visited the Wisconsin Chapter office and made more than 1,500 reminder phone calls to Walk MS participants. The support of these student volunteers helped the Chapter boost Walk MS numbers for the 11 events being held throughout Wisconsin. You can still participate in Walk MS. Details are available by visiting wisMS.org or calling 1-800-242-3358.
TOLL FREE NUMBER 1 800 242 3358
Dells Family Weekend is May 29-30
World Champion Cyclist, MS Advocate to Appear at Summit The 2009 Wisconsin MS Summit inquiry led her to gain knowledge and Family Getaway, hosted at the and understanding from a variety of Kalahari Resort in Wisconsin Dells, fields, including: Mind-body sciences, always includes a dynamic mix of behavior sciences, faith based educational sessions and networking traditions, psychology, meditation, opportunities. Slated for May 29-30, life coaching and system’s theory. The this year’s event features former U.S. application of her life lessons led her Cycling Team member Maureen to a deeper understanding that true Manley. change and transformation originates Manley saw her cycling career and from the inside. Olympic aspirations come to an abrupt After completion of a Master’s Degree in Integrated Wellness, Manley halt at age 26 with the sudden onset established her private practice and of multiple sclerosis. As a member of returned to her much-loved sport of the U.S. Cycling Team, Manley had cycling. A motivational speaker and won a National Championship, set life coach, Manley designed and is a national record, earned a silver and Courageous and inspiring, Manley now implementing the MS Wellness two bronze medals at the National will share tools to become a creative Center at Swedish Hospital in Seattle, Championships, competed in three force in your health and well-being. Washington. World Championships and won a silver medal in the 1990 World Championships. With the diagnosis of MS, she turned her Maureen Manley’s appearance determination and focus to a new journey, exploring is made possible through a ways to integrate her mind, body and spirit in order generous sponsorship from to create optimal health and peace of mind. This Acorda Therapeutics.
Crazy for Cream Puffs?
Volunteer Opportunity Includes Free State Fair Admission In exchange for volunteering to work at the Wisconsin State Fair, participants in a new program benefitting nonprofit organizations will have the opportunity to spend the remainder of the day at the Fair for free. The Wisconsin Chapter has several volunteer opportunities available on Thursday, August 13, for a variety of spots including assisting with “crowd control” for the famous racing pigs. Now that’s a story to tell the grandkids! Volunteers must be at least 14-years-old. If you are interested in participating, please contact Meghan Schnabl before May 15 at 262-369-4420 or 1-800-242-3358, Option 2 or email firstname.lastname@example.org.
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Wisconsin State Fair MS Volunteer Positions Thursday, August 13 Most positions are 8 a.m.-to-4 p.m., with some 8 a.m.-to-noon and noon-to-4 p.m. shifts available. • Transit Greeters: Greet Fair attendees as they depart buses • Ticket Takers: Scan tickets at entry gates • Racing Pigs: Assist with crowd control • Coliseum: Keep aisles clear during cattle judging • Sport Zone: Assist with crowd control • Band Walkers: Lead entertainment groups to stages • Central Mall Helpers: Assist with special events
2009 Calendar of Events April 6
April 19, 26 & May 3
Moving Forward: Newly Diagnosed Series, UW Health West Clinic, Madison
April 19 Walk MS: Brown County
April 26 Walk MS: Chippewa Valley Walk MS: Fond du Lac County Walk MS: Fox Cities Walk MS: La Crosse – Seven Rivers Walk MS: Racine/Kenosha Walk MS: Sheboygan County Walk MS: Waukesha County
MS Doesn’t Mean Losing Your Mind Cognition Seminar Presented by Jeffrey N. Gingold, Northcentral Technical College, Wausau
May 29-30 Wisconsin MS Summit and Family Getaway Kalahari Resorts, Wisconsin Dells
May 3 Walk MS: Madison Walk MS: Summerfest Grounds Walk MS: North Central Wisconsin (Wausau)
MS Luncheon, Pfister Hotel, Milwaukee
June 18 MS Luncheon, Marriott West Hotel, Madison
June 21-August 15 MS Camp for Kids, One-week sessions at Camp Minikani
August 1-2 Bike MS: Best Dam Bike Ride, Pewaukee to Whitewater to Madison
August 29 MS Family Day at the Milwaukee County Zoo
September 18-20 Challenge Walk MS: Door County TOLL FREE NUMBER 1 800 242 3358
Non-Profit Organization U.S. Postage
Milwaukee, WI 53202 Permit No. 2868
1120 James Drive Suite A Hartland, WI 53029
wisMS.org • Toll Free 1 800 242 3358 • 262 369 4400 If you have received more than one copy of MS Connection, please clip the address labels and send both to us, indicating the correct label.
There’s Nothing Like a Mom
Dedicated Volunteer Believes Society Will Find a Cure A mom is there when you need help the most. She loves you unconditionally and she advocates on your behalf when times get tough. The Wisconsin Chapter salutes one special mom whom we’ve gotten to know through her tireless volunteer work at our office – Gloria Lau. Gloria Lau, pictured with her son Gloria’s been Ronald, is a long-time Wisconsin volunteering for us Chapter volunteer. almost every week since 1998. Her specialty is getting our mailings ready – folding, stuffing, sorting, inserting – whatever needs to be done. Her motivation comes from her hope that a cure will be found for multiple sclerosis. You see her son, Ronald, was diagnosed with the disease in 1990. And although she thinks a cure may come too late for
him, she’s dedicated to helping the National MS Society and its researchers find a cure for others. At first, Gloria said, Ronald had relapsing remitting MS. But in 1998 it evolved into a chronic progressive form of the disease which left him needing long term care. Prior to that Gloria provided his care herself. Now she spends each evening with her son, age 50, feeding Ronald dinner and exercising his limbs. Because his ability to speak is limited, Gloria also works with him on language skills. Widowed the same year Ronald entered the long term care facility, Gloria and her son participated in Chapter support groups during the early years after his diagnosis. Her love and devotion to her son is commendable. But then again, she’s a mom and there’s nothing like a mom.
Commemorate Mother’s Day With a Greeting Card From the Chapter The Wisconsin Chapter is making it easy to send a special message to your mom, or a mom you know, who deserves a warm wish this Mother’s Day. Visit our Web site, wisMS.org, for details on how you can send a special greeting to a deserving mom. (Watch for information about Father’s Day cards on the Chapter web site, wisMS.org.)