Fall 2011 Summer
Meet Wisconsin’s MS Researchers
Wisconsin Board of Trustees Kenneth Minor, Chair Sonic Foundry, Inc.
Robert Engel Retired, M&I Bank
Michael Lutze, Vice Chair Ernst & Young David Rodgers, Vice Chair Briggs & Stratton Corporation
Tom Golden M3 Insurance Solutions for Business
Alyson Zierdt, Past Chair Attorney, Retired James Rose, Treasurer Baker Tilly Virchow Krause LLP Robert Sowinski, Secretary Diversified Insurance Services, Inc. Colleen Kalt, President & CEO National MS Society Wisconsin Chapter
Martin McLaughlin Reinhart Boerner Van Deuren, S.C. Bruce Olson The Marcus Corporation Shelley Peterman Schwarz Meeting Life’s Challenges David Raysich Plunkett Raysich Architects Patricia Raysich Community Advocate
Robert Buhler Open Pantry Food Marts of Wisconsin, Inc
Jeffrey Steren Steren Management/McDonald’s
Dennis Christiansen Community Advocate Albert C. Elser II Community Advocate
Molly Walsh Waisman Center
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.
©2011 National Multiple Sclerosis Society-Wisconsin Chapter
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I Call Them Rock Stars for a Reason They may not be rock stars in the traditional sense, but in the world of multiple sclerosis – they are. When I asked our Wisconsin scientists if they would be willing to be photographed wearing a “MS Research Rock Star” T-shirt, I will admit there was some hesitation. I explained that as far as we are all concerned, nothing is more important than their work. Nothing. In fact, results of a major survey conducted by the National Multiple Sclerosis Society of 9,300 individuals showed that you overwhelmingly identify research (and more of it) as the Number One need the Society should fill. Research to understand more about MS; and research to help impact people’s quality of life. But you don’t just want the Society to participate in research; you want us to blaze the trail. And so while the Society has already been doing a pretty good job in this area – funding more MS research than any other nonprofit in the world – we can, we must and we will do better … starting NOW. The Society recently launched the MS NOW campaign. It’s designed to raise $250 million for research by 2015 to STOP disease progression, RESTORE lost function and END MS forever. You can learn more about the campaign – and even become a Champion for MS Research – by visiting the Wisconsin Chapter website wisMS.org and clicking on the MS NOW link. If you’d like to contribute to MS NOW, I encourage you to contact me directly by calling 800-242-3358 or 262-369-4400. In the meantime, you can learn more about Wisconsin’s “MS Research Rock Stars” in this issue of MS Connection. You’ll find details of their work and a timeline documenting major milestones in MS research history. You’ll also find photos of them, proudly and deservedly wearing their “MS Research Rock Star” T-shirts. Sincerely,
Colleen G. Kalt President & CEO
MS CONNECTION: Fall 2011
Wisconsin’s Researchers Focused on: The National MS Society is committed to supporting research focused on these three distinct results, with a $250 million fundraising goal by 2015. The Society funds a broad range of topics across all stages of research, supporting more than 440 research grants and training fellowships around the world. Already progress is being made. Twenty years ago, there were no FDA approved therapies for MS. Today, there are approved disease-modifying therapies for relapsing forms of MS, including an oral therapy, and there are more potential MS therapies in development than at any other time in history. A few years ago, there was little belief that nervous system repair was possible. Now, there is a whole new field that has emerged to pursue strategies to repair the nervous system and restore function to people with MS. Significant progress has been made, but more must be done. Now is the time to stop MS in its tracks, restore what’s been lost and end the disease forever. Promising avenues are being pursued around the world. A number of these MS research studies are taking place in Wisconsin. While many Wisconsin researchers may shy away from the title, “MS Research Rock Star,” it fits the individuals who are propelling important MS research forward.
Stopping Progression
Restoring Function
Ending MS Forever
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Michael Carrithers, M.D., Ph.D. Dr. Michael Carrithers was previously at Yale University, where he also completed his residency and fellowship. Now, he’s an associate professor at the University of Wisconsin-Madison School of Medicine and Public Health and treats patients at the University Hospital and Clinics’ MS Clinic and at the William S. Middleton Veterans Memorial Hospital.
Our goals are to develop new and safer treatments for patients with all forms of multiple sclerosis. - Dr. Michael Carrithers His research involves studying the way immune cells move through the body. He says his primary goal is to develop treatment strategies that will help maintain normal immune surveillance in the brain to treat people with MS. Dr. Carrithers says his favorite pastime is spending time with his family. He also spends his working hours with his wife, Lisette, who is a research specialist in his laboratory.
1421 First documented case of MS: St. Lidwina of Schiedam 1860-70 First studies of myelin and glial cells in brain tissue 1868 First correlation of MS clinical symptoms with central nervous system pathology; disease named “Sclerose en plaques” by Jean Martin Charcot
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1869 First attempts to treat MS with gold chloride, zinc, sulfate, silver nitrate, strychnine and electrical stimulation (by Charcot) 1928 Discovery that myelin is produced by oligodendrocyte glial cells 1933 Experimental allergic encephalomyelitis (EAE) developed as an animal model for MS
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1936 Discovery that lymphocytes are involved in immune function 1943 First detailed description of the composition of myelin 1946 Sylvia Lawry founds National MS Society
1947 First research grant to Elvin A. Kabat, M.D, who went on to identify abnormal immunologic proteins in the spinal fluid of people with MS 1950 National Institute of Neurological Diseases founded at National Institutes of Health through the work of the Society
Shing-yan Chiu, Ph.D. Shing-yan (Bill) Chiu is a professor at the University of Wisconsin-Madison School of Medicine and Public Health. He completed his Ph.D. at the University of Washington. The National MS Society has long supported Chiu’s work, going back about 30 years. Chiu uses sophisticated imaging tools to capture “movies” of nerve fibers in order to study the way mitochondria move. Mitochondria generate energy for nerve fibers, and malfunctions in these tiny energy makers may play a role in MS. Chiu’s research focuses on basic science that hopefully will lead to clinical benefits. During his post-doctoral work at Yale University, Chiu and his mentor J. Murdoch Ritchie set out to find out what was underneath myelin when it is taken off nerve fibers. What they found opened a “whole new era of basic research,” according to Chiu.
We were among the first to ask the critical MS question: if the myelin comes off the axon, what is underneath? We took a peek at what’s underneath and found a goldmine. A whole new era of basic research was born because of this peek. - Dr. Shing-yan Chiu
1950 Society funds first major survey of MS in the U.S. and Canada 1954 First Fellowship programs to train MS scientists offered 1965 Society-convened panel of experts develops precise criteria for diagnosing MS
1969 Society co-funds research of steroid ACTH, which becomes the first drug shown to speed recovery from MS relapses 1974 Society convinces U.S. Congress to appoint commission on MS; resulting report increases federal funding for MS research 1978 Wisconsin Chapter founded
1980 Society funds first large trial of any form of interferon (interferon alpha), stimulating interest in interferons for treating MS 1981 First MRI pictures of a brain affected by MS are produced, revolutionizing MS diagnosis
1981 Identification of oligodendrocytes in MS brain with capability for regeneration of myelin 1983 Society supports studies of the anti-cancer agent mitoxantrone in an animal model of MS. In 2000, this drug (Novantrone) is approved by FDA to treat worsening MS
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Bonnie Dittel, Ph.D. Bonnie Dittel is a Senior Investigator at the BloodCenter of Wisconsin – Blood Research Institute, located in Milwaukee, and an assistant adjunct professor in the Department of Microbiology and Molecular Genetics at the Medical College of Wisconsin. She completed her doctorate at the University of Minnesota and continued her postdoctoral training at Yale University. Dittel is looking at how cannabis-related molecules interact with and affect the immune system and their potential for turning off immune attacks. Dittel’s research involves cannabinoids, a class of drugs best know for Delta-9-tetrahydrocannabinol (THC), the active substance in marijuana. She is studying how synthetic and plant-derived cannabinoids that bind to a receptor called cannabinoid receptor 2 (CB2) affect immune system cell activity in EAE, an MS-like disease. Previously, Dittel and her colleagues had found that mice with EAE that did not have CB2 on some of their immune cells developed severe disease. Dittel and her team are trying to determine which cannabinoids suppress EAE the most.
I’m very dedicated to research in MS. Basically, every biological question we ask in the laboratory revolves around MS, mostly using its animal model. - Bonnie Dittel 1984 First modern documentation of cognitive problems in MS 1987 Society establishes programs to attract research proposals in patient management, care and rehabilitation and to test novel, high-risk ideas
1988 First demonstration, using MRI, that there is significant lesion activity in the brain in MS, even when the disease is clinically quiescent
1992 Society supports first comprehensive search for genes that make people susceptible to MS, initiating a targeted research program in MS genetics
1990 Wisconsin’s total Society-funded research passes the $1 million mark
1993 Betaseron approved by FDA for relapsingremitting MS, becoming first drug approved that affects underlying disease. The Society had supported the first study of any type of interferon in MS
1988 Health Care Delivery and Policy Research Program established
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1996 Society grantees find that aerobic exercise improves physical and psychological well-being in persons with MS 1996 Avonex and Copaxone approved for relapsingremitting MS. The Society funded early basic research underlying both therapies 1997 Zanaflex (tizanidine) approved for treatment of spasticity
Ian Duncan, BVMS, Ph.D. Ian Duncan, BVMS, Ph.D., was the recipient of a $3.4 million grant from the National MS Society Promise: 2010 Nervous System Repair and Protection initiative, the largest sum for one grant ever given to a Wisconsin researcher. A professor of neurology at the University of Wisconsin-Madison School of Veterinary Medicine, he completed his doctorate studies at Glasgow University.
Our team found the first formal proof that extensive remyelination restores function. - Ian Duncan One of the goals of his research is to repair the myelin sheaths that are damaged in MS. Duncan demonstrated that remyelination can occur in an animal model that has extensive demyelination. His team also studies transplantation of myelin-making cells to repair damage in the nervous system. Duncan uses his enthusiasm for biking and skiing to raise funds for the Wisconsin Chapter. He is a Bike MS: Best Dam Bike Ride captain and is the force behind the Wisconsin Chapter’s relationship with the American Birkebeiner.
1997 Sylvia Lawry Physician Fellowship Program established to train doctors in conducting clinical trials in MS 1998 Society launches targeted research initiative into gender differences in MS
1999 Society initiates first-ever longitudinal patient-focused database effort, the Sonya Slifka MS Longitudinal Study, providing quality of life and socioeconomic data
1999/2000 Society initiates new clinical trials in estrogen treatment for women with MS and T-cell vaccination, both of which had their origins in early fundamental NMSS research
1999 Society grantees first to isolate immature cells in the adult brain capable of developing into replacements for myelin-making cells destroyed by MS
2000 Society initiates international collaborative research effort to better correlate the MS lesion with disease state and MRI: The MS Lesion Project
2000 Novantrone approved in U.S. for worsening forms of MS 2001 Society task force develops new diagnostic criteria for MS, which may shorten the time it takes a person to receive a firm diagnosis
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Aaron Field, M.D., Ph.D. In 2010, the National MS Society and the MS Society of Canada funded seven research studies with more than $2.4 million in order to advance the understanding of Chronic Cerebrospinal Venous Insufficiency (CCSVI) and its role in MS. One of these studies takes place at the University of Wisconsin-Madison, led by Dr. Aaron Field. Dr. Field is an associate professor in the Department of Radiology at the University of Wisconsin School of Medicine and Public Health. He studied Electrical Engineering at the University of Illinois at Urbana-Champaign and completed the M.D./ Ph.D. Program in Bioengineering at the University of Illinois College of Medicine at Chicago. He is studying CCSVI using MRI techniques. If Dr. Field’s techniques obtain similar results as the study originally published by Dr. Paolo Zamboni, it would represent a powerful confirmation of the CCSVI hypothesis.
At UW-Madison, we are well equipped with cutting edge MRI technology. - Aaron Field Dr. Field rides on the Bike MS: Best Dam Bike Ride team, “Madtown Myelinators,” led by Ian Duncan. This year’s ride was his third.
2001 Cumulative research grants awarded by the Society to Wisconsin researchers now exceeds $5 million 2001 Society collaborates with NIH on a $20 million research initiative on gender-based differences in immune responses to increase understanding and treatments
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2002 Rebif approved in U.S. to treat relapsing-remitting MS 2002 New Career Transition Fellowship Program launched to foster promising young MS investigators
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2003 Society launches Collaborative MS Research Centers, five-year awards to team up scientists and clinicians from a variety of fields to work on promising avenues 2003 Italian researchers transplant cells to enhance nerve tissue repair in mice with MS
2005 Ian Duncan receives $3.4 million for the Society’s Promise: 2010 initiative, the largest grant ever awarded to a Wisconsin researcher. This pushes total dollars awarded by the Society to Wisconsin researchers to more than $12 million
John Fleming, M.D. Dr. John Fleming is the Director of the MS Clinic at the University of Wisconsin-Madison Hospital and Clinics and a professor at the University of Wisconsin School of Medicine and Public Health. He went to medical school at State University of New York and serves on the Wisconsin Chapter’s Clinical Advisory Committee.
In the developing world where they have many helminths and other infections, they just don’t get multiple sclerosis. - John Fleming Dr. Fleming is studying “probiotic” treatment for MS, based on the “hygiene hypothesis,” which suggests that developed countries have higher incidences of autoimmune disease because there is little exposure to parasites and other infections. The “probiotic” treatment in Dr. Fleming’s study involves microscopic worm eggs that patients drink in a sports drink, using the worm eggs to change the immune response. The first phase of the clinical trial is completed and Dr. Fleming and his team are now underway on a larger and longer clinical trial.
2005 Society launches Promise: 2010 campaign to raise at least $30 million for cutting-edge research and clinical care initiatives including six Pediatric MS Centers of Excellence and initiative to speed nervous system repair and protection clinical trials in MS
2005 “McDonald Criteria” for diagnosing MS updated by Society Task Force, speeding time to diagnosis for many 2005 Society collaborates with NIH, MS Society of Canada and University of Washington on international workshop to move MS rehabilitation research forward
2006 Tysabri approved in U.S. for treating relapsing MS 2007 Society and MS International Federation convene a Stem Cell Research Summit of leading stem cell and MS experts to explore the potential of all types of stem cell research for MS and to set research priorities
2007 First large-scale trial of sex hormone estriol gets underway in women with MS, a result of the Society’s targeting of gender differences 2007 With support from Society to International MS Genetics Consortium, two genes are confirmed to be linked to MS susceptibility
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Colleen Hayes, Ph.D. Vitamin D deficiency has been implicated in many diseases, including MS. Longtime vitamin D and MS researcher Colleen Hayes is a professor of biochemistry at the University of Wisconsin-Madison. She completed her undergraduate studies at DePauw University and her doctorate at the University of Michigan.
There is very good scientific evidence correlating low levels of vitamin D with a high risk of MS and with high disability in people with MS. - Colleen Hayes Hayes and her colleagues are researching the role vitamin D plays in MS, including studies on the hormone form of vitamin D, calcitriol, and estrogen. She is investigating how each might interact with vitamin D to control MS-like immune attacks in mice. She soaks up sunshine herself during her many outdoor activities, such as whitewater canoeing, sailing, hiking, bicycling and swimming. A recent outdoor adventure took Hayes up Mt. Kilimanjaro as part of the Leap of Faith MS Climb led by Wisconsin native Lori Schneider.
2007 Society launches Fast Forward to speed treatments to people with MS through collaboration and funding support across university-based research, biotechnology and pharmaceutical companies
2007/2008 Congressional MS Caucus launched to raise awareness and generate discussion about access to health care, increase in research funding, disability rights and other MS issues, with members from the House and Senate
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2008 MS activists secure a place for MS research in the $50 million Congressionally Directed Medical Research Program, administered through the Department of Defense, plus $5 million restricted to MS research within the CDMRP
2008 International MS Genetics Consortium undertakes a whole genome scan involving 10,000 individuals with MS and indentifies around 20 regions in the genome that are associated with MS risk. Society funds second study of 10,000 cases to validate the findings
Alexander Ng, Ph.D. Alexander Ng is an associate professor in the Exercise Science Program at Marquette University. He completed his Ph.D. in Exercise Physiology at the University of Wisconsin and is a Fellow of the American College of Sports Medicine. Ng’s research focuses on symptomatic fatigue in chronic disease with an emphasis on multiple sclerosis and cancer survivors. Fatigue is one of the most common symptoms of MS, occurring in about 80 percent of individuals with the disease. His past Society-funded work suggested that fatigue and the cardiovascular system may be related in MS. Ng has worked with Dr. Douglas Woo, a neurologist at Froedtert & The Medical College of Wisconsin, on several of Ng’s research studies.
Research sponsored by the National MS Society has made tremendous strides toward finding a cure as well as managing the disease or rehabilitation. - Alexander Ng
2009 International task force convened by Society publishes landmark guidelines on the complex process of telling MS from look-alike disorders (“differential diagnosis”) 2009 Extavia is approved by the FDA as a new brand of interferon beta-1b
2009 Society holds first-ever Don Tykeson Fellows Conference to stimulate new research ideas and strengthen the commitment of bright young people to MS research 2010 The Wisconsin Chapter fulfills its Promise: 2010 commitment of $2 million through the generosity of donors
2010 Gilenya, first oral disease-modifying therapy for MS, approved for relapsing forms 2010 Ampyra approved to improve walking ability in people with all types of MS
2010 Fast Forward, Juvenile Diabetes Research Foundation and Axxam SpA Join Forces to Accelerate Development of Treatments 2010 Nuedexta and Botox approved to treat specific symptoms that interfere with quality of life in people with MS
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Always in the Game
Scherwinski Tops Bike MS Fundraising for 10th Consecutive Year Anyone familiar with any of the past 14 Bike MS: Best Dam Bike Ride events is probably familiar with Chuck Scherwinski. The veteran ride participant from Waukesha has been among the Top 10 Bike MS fundraisers in the country for three of the past four years, and has consistently landed among the Top 20 for as long as the National Multiple Sclerosis Society has kept such statistics. His efforts have raised – in total – more than a half-million dollars, earning Chuck the prestigious honor of being among a handful of individuals who will be inducted into the Society’s Volunteer Hall of Fame this November. Through 2010, Chuck had secured $425,430.35 in donations. He raised an additional $80,468.57 this year – a personal best. “When we started, the top fundraiser was $3,500, so you look at it today and you go, wow, that’s really changed,” Chuck says. “Teams are challenging themselves to do more.” The 13 riders on “Chuck’s Athletic Supporters” this year included Chuck’s friends along with his son and daughter. His brother-in-law took part, as he has each year that Chuck has been involved. Past riders have included Chuck’s daughter-in-law, Lindsey, along
(From left) Chuck Scherwinski with his wife, Anne, daughter, Britney, daughter-in-law, Lindsey, and son, Andy proudly sport the team T-shirt. with his brothers, sisters, nieces and nephews. With 12 siblings, the number of potential participants on each year’s roster is practically unlimited.
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Chuck Scherwinski’s daughter, Britney, left, and son, Andy, right, were among those who joined him for the 2011 Bike MS: Best Dam Bike Ride. MS Diagnosis at 35 Chuck “was as healthy as you ever wanted to be” when MS hit at age 35. The former high school quarterback was playing on two softball teams at the time. He remembers pitching a game where he was seeing double. “It shocked me to the core,” he recalls of learning he had MS. “I was always in the game, so when I was diagnosed it was like, ‘No way, not Charlie.’” That was in 1996. The following year, Chuck’s son, Andy, came home with an invitation from a fellow church member to join his Bike MS team. That person turned out to be Ed Brady, part of the “Kamikaze Bean Counters.” Chuck and Andy joined Ed for two years before branching off to form “Chuck’s Athletic Supporters,” which Andy, now 27, captains. “As much of a disappointment that having MS has been, in certain ways, it’s been a blessing. It’s opened the door for so many things and so many people who have come into our lives,” says Chuck, who trained with his daughter, Britney, for the 2011 ride. That isn’t to say Chuck doesn’t get angry about having the disease. “I think I’m still not OK with having MS,” he says, describing the Avonex injections and canister of used needles in his bathroom cabinet. But, he’s quick to point out, that’s why he and his team work so hard.
“I wouldn’t wish this on anybody and I am fortunate in my dealing with it at this point,” he says. “I don’t ever take that for granted.” Four Fundraising Suggestions A competitive spirit only goes so far, though. Chuck figures running his own business (Door Professionals in Waukesha) has helped him learn a few things in addition to the common sense approach he incorporates. Here’s his advice: • Go out and shake a hand. “You can’t always just throw out a blanket e-mail or post something on Facebook. You have to go old school. Your donors have to put a face with the disease to see someone who is swinging hard and working through the rough parts each day.” • Set a standard. The $1,000 minimum required of each of his team members — well above the $300 minimum set by the Society — raises the bar for those who want to take part. “We’re not trying to be arrogant. We’re trying to emphasize the point that it’s a fundraiser.” • Keep a separate go-to list. “There are lots of good causes, and we do partake in a number of them. But the well has to run dry.” To prevent that
from happening and to keep MS “first and foremost,” Chuck doesn’t ask his MS donors to contribute to other fundraisers, and vice versa. • Look for corporate donations and sponsorships. “Even corporate people know someone with MS. If you can be that person who activates that connection, to say we’re doing a bike ride to fund research to help the person they know, it makes it easier to sell. And let’s face it; you’re trying to sell it.” Chuck has on occasion approached business contacts and shared his story to generate awareness and support for the fight against MS, but he says he does so selectively. “You can cross the line real easily,” he warns. “People know what MS is and that it can be very disabling, so you can damage yourself that way, too.” Chuck’s support doesn’t end with the money he raises. He and his teammates use other creative measures to build awareness. From hosting a pasta dinner for members of his bike team and playing with his band, Jo-Jo and the Go Monkeys, on Milwaukee’s Summerfest grounds during Walk MS, to representing the Wisconsin Chapter at a Milwaukee Bucks game during MS Awareness Week and serving as co-captain with his son for the game, he keeps his personal mission going strong year-round.
Partnering With Corporations Can Drive Fundraising Success In addition to his efforts to secure donations toward his annual Bike MS total each year, Chuck Scherwinski was instrumental in bringing in TOYOTA for the title sponsorship five years ago. He was able to do so thanks to good friend Pat Donahue, who works for the Wilde TOYOTA dealership group in Waukesha and had been a great contributor to Chuck’s team total for many years. Chuck asked about the possibility of TOYOTA becoming the corporate sponsor of the event, and Pat was able to get in touch with the right people to help make it happen. “The bigger companies want to and need to be affiliated with quality fundraising efforts, so I don’t think it’s tough for them to be involved in something like this,” Chuck says. He adds, however, that people need to keep in mind that corporations are businesses that need to see something in return for their investment. “The more we do this and more years they’re involved, it’s becoming a well oiled machine.” If you have a corporate connection you’d like to explore for sponsorship of Bike MS: Best Dam Bike Ride, Walk MS, or any of the Wisconsin Chapter’s special events, please contact Laurie Schill at 262-369-7168 or e-mail laurie.schill@nmss.org. The Chapter can assist with all facets of the sponsorship, from drafting a proposal to providing promotional benefits. TOLL FREE NUMBER 1 800 242 3358
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January 2011), has begun engaging Inspiring Creativity college groups, restaurants, students, and Action schools and corporations to raise He also takes donations in part because of Chuck’s part in other MS inspiration. fundraisers, like the “For as long as I can remember, Croal Open, the Chuck has been the top fundraiser at annual golf outing the Best Dam Bike Ride. Not only created 22 years ago does he push himself, but he pushes by Mike, Dan and everyone else as well. It’s truly amazing,” Tim Croal in memory says Becky, who has already received of their mom, who Chuck’s wife, Anne, hosts a rest stop at each year’s a Pepsi Refresh Grant for her efforts. had MS. “They’re Bike MS: Best Dam Bike Ride. The theme for this “When I talk to Chuck and his family, continuing the fight year’s stop: The Wizard of Oz. I remember why we do what we do. We and understand the fight so that someday other families won’t have to.” bigger issue, which is finding a cure,” Chuck says of his former classmates and current Bike MS teammates. One For The Team “They inspire me with their tenacity in maintaining the Being named Fundraiser of the Year means that Chuck effort.” surpassed countless other MS fundraisers throughout the And while they inspire Chuck, he inspires others nation in their continued efforts to support the cause. to get creative in their own ways to support the Society But he doesn’t view it as an individual award. mission. His brother Ron works with the Damn Yankees “It means we’re doing our job, and when I say we, Wateringhole and puts together a duck race on the Wolf I mean my family, my friends, our team and everyone River with the proceeds benefiting MS. Another brother, connected to me,” he emphasizes, pointing out that John, came up with the idea for the Dousman Car Show the team is teetering on the $1 million mark for total – which he produces with Doug Vanderhei from Auto fundraising. “It’s not a single person issue, it’s everybody. Paint & Supply. Both events include raffles, music, food It’s an award for the team. I may be the name they put and drinks with proceeds benefiting “Chuck’s Athletic on it, but it’s not just me. I’m a teamer, man.” Supporters.” Becky Hall, a member of “Charlie’s MS Angels” (named after Charlie Siewert, who died in
22 Years and Counting
Croal Open Golf Outing Supports Bike MS
Dad Jim, center, on the course with sons Tim, left, and Mike.
The Croal brothers – Mike, Dan and Tim – have organized the Croal Open golf outing for 22 years. The event, which started as a purely social gathering, switched to a fundraiser format for Bike MS: Best Dam Bike Ride 10 years ago. In that time, the event has generated more than $210,000. The Croal brothers launched the event to honor their mom, Dorothy, who passed away from complications of MS. The brothers are high school classmates of Chuck From left: Dan and Mike Croal Scherwinski, and Dan and Mike ride on the “Chuck’s pose with the golf outing trophy. Athletic Supporters” Bike MS team.
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Society’s Volunteer Hall of Fame Includes 18 Wisconsin Honorees Year Inducted Name Category 1997 Ellen Levin Fund Raising 1997 David Martin Fund Raising 1998 Robert Schmidt Fund Raising 1999 Father Charles Brooks Fund Raising 2000 Michael Maloney Client Programs 2001 Jan Lennon Fund Raising 2002 John O. Fleming Health Professionals 2003 Loren A. Rolak Health Professionals 2005 Deborah Miller Health Professionals 2006 Sen. Alberta Darling Advocacy 2006 Jeffrey Gingold Volunteer of the Year Runner-up (one of two; only time runners up were included) 2007 Shelly Peterman Schwartz Programs & Services 2008 Thomas Bush Programs & Services 2008 Ian Duncan Health Professional and Research 2008 Susan Wilkey National Lifetime Achievement Award 2009 Ian Duncan Fund Raising 2009 Scott Hanson Advocacy 2011 Chuck Scherwinski Fund Raising
Recognition for Funding the Mission
Wisconsin Cyclist to be Honored at Leadership Conference The Wisconsin Chapter is proud to announce that Chuck Scherwinski is being inducted into the National Multiple Sclerosis Society’s Volunteer Hall of Fame. He is being recognized for his leadership in Funding the Mission and is the 18th representative from Wisconsin to be inducted into the Hall of Fame (see list below). “Chuck is a shining example of ‘owning’ the movement, pushing toward a cure and engaging others along the way,” said Colleen Kalt, president and CEO of the Wisconsin Chapter, in nominating him for the award.
To be eligible for the Funding the Mission award, nominees must meet several criteria including generating at least $100,000 through donations or personal gifts. Winners of this and other Volunteer Hall of Fame Awards (Advocacy, Programs and Services, Health Professionals, and Scientific Researchers) are selected by a panel of Society judges. Chuck and the 2011 inductees will be honored at the Society’s National Leadership Conference, November 2-4 in Dallas.
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IRA Rollovers
Make the Most of This 2011 Giving Option There’s good news for individuals aged 70½ or older with IRAs. Thanks to renewed legislation, a simple, taxfriendly option has joined your list of charitable giving possibilities. Under the law, you can once again use IRA funds to make charitable gifts without tax complications. If you are required to withdraw minimum distributions from your IRA and you do not need the money for personal use, consider giving part or all of it to the National MS Society-Wisconsin Chapter. While you cannot claim a charitable deduction for the IRA gift, you will not pay income tax on the amount. You may contribute funds this way if: • You are 70½ or older at the time of the gift. • Your IRA gifts total $100,000 or less. • You transfer funds directly from your IRA.
• You transfer the gifts outright to the Chapter. (This excludes gifts made to charitable trusts, donor advised funds, gift annuities and supporting organizations.) Moving Forward Be sure to contact a tax professional and your IRA administrator if you are considering a gift under this law. But don’t wait. This opportunity to support the movement with a tax-free gift from your IRA is set to expire December 31, 2011. For more information, contact Denise Jendusa at the Wisconsin Chapter office by calling 262-369-7716 or 800-242-3358, or emailing denise.jendusa@nmss.org.
Par-tee Planning Pays Off
Annual Golf Outing Keeps Adding to Its Success Pat Klotz likes a good party. The clubhouse manager at Broadlands Golf Club created “Pat’s Par-Tee Annual Ladies Scramble” after her son, Scott Salamonski, was diagnosed with MS. The annual event, now in its 11th year, is held each August at Broadlands in North Prairie. The shotgun start outing regularly includes between 75 and 100 women, and begins at 8 a.m. with coffee and doughnuts. Lunch also is provided. A portion of the entry fee and proceeds from each year’s raffle are donated to the National MS Society. To date the event has raised $23,000. Many of the participants return each year, which Klotz attributes to these “par-tee planning” tips: • Have a theme. Something like “Hawaiian” or “Mardi Gras” help get people in the right mindset. • Don’t skimp on the food. A substantive menu like steak and potatoes with a great dessert generate
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good feelings about the event, helping to bring people back for the next one. • Hold it at approximately the same time each year. Pat’s Par-tee falls on the second or third Wednesday in August, so returning players know ahead of time to keep those days open. • Remind folks why they’re there. Last year, Klotz addressed the group at lunch, reminding them there were two women and her own son in the audience who had been on Betaseron for 10 years. “That’s where our money goes,” she told them. “Your money is going for further research.” Visit broadlandsgolfclub.com for more information about Pat’s Par-tee, or contact Klotz at golfoutings@broadlandsgolfclub.com.
Raise $850 in One Day
Challenge Walk MS Participant Shares Fundraising Suggestions Although she had no prior fundraising experience, Challenge Walk MS participant Melissa Wheeler has been quite successful in securing donations – even raising $850 overnight by making the most of her e-mail contacts. The Vice President of Business Development for Great Wolf Resorts had made MS her personal charity of choice for 12 years to support a friend with the disease before Wheeler, too, was diagnosed in 2008. She incorporated this story into a personal testimonial she shared with 150 people on her e-mail list. Wheeler compiled the e-mail list by asking herself: if the roles were reversed, would she Melissa Wheeler, left, and donate to them? Margaret Dretz finish the final The keys to a miles of Challenge Walk MS 2010. good e-mail request, she says, are 1) keeping it short, 2) including the link to your donation page and 3) “making it a pretty compelling
story” of why you’re participating in the fundraising event. Wheeler’s other suggestions for fundraising success: • Start with a “pretty hefty” personal donation so donors can see that you’re committed. Wheeler started with $500 of her own money. • Make sure your personal page isn’t generic. “There’s more impact if it’s personalized,” she says. In fact, Society research shows that by personalizing your fundraising page you can double your fundraising success. • Remind people about company matches. Wheeler’s brother gave $100 and his employer matched it. • Use Facebook. Last year Wheeler’s daily status updates counted down to the event with the names of people who had given most recently, and she also provided a running tally of how many more donors she needed to make a $25 pledge. She raised $2,500 that way. • Come up with other giving options. Wheeler and six other team members from Great Wolf Resorts set out a change jar at the front desk with a sign reading, “Drop your change for a change in MS.” At another team member’s workplace, employees who donate $5 or $10 can wear jeans on a Friday. • “Never, never, never underestimate who might donate because they’re touched by MS,” Wheeler adds. “Just open your mouth and talk about it.”
Do You Have a Foundation Connection?
Grant Awards Provide Support for Society Initiatives The Wisconsin Chapter extends its sincere gratitude to the following organizations for grants awarded July 1 through September 30, 2011. For information or to suggest a grant opportunity, contact Cindy Yomantas at 262-369-4431 or cindy.yomantas@nmss.org. • $4,500 from Genzyme for MS Day at the Zoo and educational programming • $2,500 from the Jack DeLoss Taylor Charitable Trust for Holiday Giving and the MS Scholarship program • $2,500 from EMD Serono for MS Day at the Zoo
• $2,000 from the Jerome and Dorothy Holz Family Foundation for the MS Scholarship program • $500 from the Frances and Joseph Bachman Charitable Fund • $100 from the Mead Witter Foundation
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Ways of Giving
Whichever Way You Choose, Your Contribution Moves Us Forward There are many ways to help create a world free of MS, and every gift – regardless of size – moves us another step closer. No matter which way (or ways) you choose to contribute based on your lifestyle and current giving capacity, know that just over 83 cents of each dollar will go directly to helping those with MS and those who love and care for them.
Gift Match Many employers offer a matching gift program, in which an employee makes a donation to an organization and the employer matches (and in some cases doubles) the gift. Ask your HR representative for information or look for a list of known companies offering the program by checking the Donate page on wisMS.org.
General Donations Unrestricted donations made to the Wisconsin Chapter allow the funds to be allocated to areas where needs are most critical. Anyone making a personal annual gift of $1,000 or more is invited to join the Golden Circle, a program that recognizes significant support with additional access to breaking research news and invitations to exclusive events.
Make a Mark for MS Use the tax check-off program and encourage your family and friends to do the same. Simply by checking the appropriate box on your Wisconsin income tax form, you can help those affected by MS maintain their independence and connectivity with the community. One hundred percent of your Make a Mark for MS contribution goes to aiding Wisconsin residents who have MS.
Event Support Encourage the dedication, effort and commitment of friends, family members, neighbors or co-workers who take part in major fundraising events like Bike MS: Best Dam Bike Ride, Walk MS, Challenge Walk MS, MS Snowmobile Tour, Mud Run or Birkie Skiers for Cures by helping them meet or even exceed their personal fundraising goals. Workplace Giving Regular donations to the Society add up, and making them can be easy through automatic payroll deductions. Many workplaces use the Community Health Charities Wisconsin giving program, the largest workplace giving program devoted entirely to health issues. Ask your Human Resources representative for details. You also have the option of directing United Way contributions to the Wisconsin Chapter through the Donor Designation form by writing in “National Multiple Sclerosis SocietyWisconsin Chapter.” Public sector and government employees can support the Wisconsin Chapter through the Combined Federal Campaign. Gifts made through workplace giving are tax deductible. [Don’t have a workplace giving campaign? Community Health Charities Wisconsin can help you get a program started. Call 1-800-783-0242 for details.]
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Planned Giving Also known as charitable gift planning or estate planning, these types of gifts can help you meet your personal financial goals while furthering the work of the National Multiple Sclerosis Society-Wisconsin Chapter. Bequests Designated through a legal will, bequests can be made in any amount and can significantly reduce estate taxes. You maintain the use, benefit, enjoyment and control of your assets for life, then help advance the mission to find a cure by bequeathing a designated dollar amount, specific property, or percentage of your estate upon death. Life Insurance You could choose to transfer to the Wisconsin Chapter an older policy that you no longer need, naming the National Multiple Sclerosis Society-Wisconsin Chapter as both the policy’s beneficiary and irrevocable owner for its cash surrender value. Another option is to transfer funds to purchase a life insurance policy, or name the Society as beneficiary or contingent beneficiary of a current policy.
Charitable Giving FAQ Charitable gift annuity, trusts and retirement plans also fall under this category. A financial or legal advisor can help determine the best option for your needs. The Lawry Circle Named after the National MS Society’s founder, Sylvia Lawry, the Lawry Circle recognizes and honors people who have demonstrated a deep commitment to improving the lives of those with MS by establishing a deferred gift for the National MS Society. Deferred gifts include: bequest intentions in a will, charitable gift annuities, charitable trusts, retirement account beneficiary, and a beneficiary designee in a life insurance policy or a donation of a policy. Because all deferred gifts represent an expression of lifetime commitment to the Society, there are no minimum gift levels and membership is for life. Please contact the Wisconsin Chapter if you have designated the National MS Society in your estate plans or if you have questions about membership in the Lawry Circle. For more information on these or other ways of contributing to the movement: Contact Denise Jendusa at 262-369-7166 or denise.jendusa@nmss.org Visit the “Donate” page at wisMS.org Call 262-369-4400 Visit the Wisconsin Chapter offices at 1120 James Dr. in Hartland The National Multiple Sclerosis Society is a 501(c)(3) organization, and donations are tax deductible to the full extent of the law. The National Multiple Sclerosis Society is a Better Business Bureau Accredited Charity.
Is my contribution tax deductible? If you itemize on your tax return, cash contributions to the National Multiple Sclerosis Society (where no goods or services were received) are fully deductible to the extent of the law. Contributions to the Chapter qualify for the charitable contributions deduction to the extent provided by Section 170 of the Internal Revenue Code. How will the money from my donation be used? Donations are used to fund comprehensive and vital programs and services for people living with MS and their families in Wisconsin. From care management, to financial assistance, to educational, wellness and recreational programs, to advocacy and a national call center, your contributions make it all possible. A portion of all donations is used for Society initiatives such as research, and continued support is key to paving the way to understanding the disease, developing better treatments and finding a cure.
Specifically for Individuals with MS
Free Seminar Details Estate and Financial Planning Strategies The National Multiple Sclerosis Society is presenting a free webinar titled, “Estate and Financial Planning for those Living with Multiple Sclerosis.” The one-hour presentation is being offered Monday, October 17 from 11:30 a.m. to 12:30 p.m. CST. While the webinar is free, advance registration is required. Martin M. Shenkman, CPA, JD will lead the webinar. Shenkman is a frequent contributor to the
Society’s quarterly magazine, Momentum. Dr. Nicholas G. LaRocca, the Society’s Vice President of Health Care Delivery and Policy Research, will also participate in the webinar. To register for “Estate and Financial Planning for those Living with Multiple Sclerosis,” please contact Denise Jendusa at 262-369-7166 or 800-242-3358 or e-mail denise.jendusa@nmss.org.
MS Connection is a publication of the National Multiple Sclerosis Society-Wisconsin Chapter. For information or to share story ideas, please call 262-369-4431. Editor: Cindy Yomantas, Art Director: Amy Malo, Copywriters: Amanda Gasper and Maureen Waslicki.
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More Than $21.5 Million in 28 Years
Bike MS: Best Dam Bike Ride Marks MS Research Milestones The nearly 1,900 riders and volunteers at the 2011 Bike MS: Best Dam Bike Ride were reminded that while the event runs only two days, the impact of their participation will last a lifetime. National Multiple Sclerosis Society-Wisconsin Chapter President and CEO, Colleen Kalt, shared at Saturday evening’s program, “This little ride already has literally changed the course of MS.” Among other advancements, she pointed out that 28 years ago there were no MS drug therapies and today with the support of the Society, there are eight. Participants in the 2011 event secured more than $1.5 million in pledges and donations, pushing the 28-year fundraising total for Bike MS: Best Dam Bike Ride to more than $21.5 million. A face familiar to most, Chuck Scherwinski, took the title of top fundraiser for the 10th time; while Pearl Capello and Mike Wesolowski were recognized for 25 years of volunteer service. Bike MS: Best Dam Bike Ride registration is already open for 2012. Visit bikeMSwisconsin.org or call 800-242-3358 or 262-369-4400 or e-mail info.wisMS@nmss.org.
Conquering the Course From Saturday’s start at Waukesha County Technical College in Pewaukee to the new Finish Line at WPS Health Insurance in Madison, hundreds of photographs captured the enthusiasm and determination of Bike MS: Best Dam Bike Ride participants and volunteers as they conquered this year’s course. You’ll find a link to photographs at bikeMSwisconsin.org, where you can also register for the 2012 event. TOLL FREE NUMBER 1 800 242 3358
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Wisconsin Chapter News and Notes
This is How We Move It
Midwest Teleconference Series The National MS Society hosts a free Midwest Teleconference on the second Monday of each month from 7-8 p.m. Topics, presented by a variety of experts, cover different aspects of living with multiple sclerosis. The first teleconference, “Eating for Healthy Living with MS,” will take place Monday, October 10. Future teleconferences include: • “Hot Flash or MS Moment,” November 14 • “You are Not Alone,” December 12 • “Making Connections Thru Social Networking,” January 9, 2012 • “What About Progressive MS,” February 13, 2012 Check the Wisconsin Chapter website, wisMS.org, for details on registration or call 800-242-3358. Informative MS Videos Available Online. More than 50 videos are now available at the Society’s MS Learn Online website, and new productions are added monthly. There are Spanish Learn Online videos, too. Visit nationalMSsociety.org to view the MS Learn Online videos – and sign up for e-mail alerts so you’ll know when a new feature is available for screening. Wisconsin Chapter Calendar of Clinic Visits Representatives of the Wisconsin Chapter regularly visit several of the organization’s official clinics. During these visits, Chapter staff is available to meet confidentially and answer questions plus share informative literature. The current schedule of clinic visits is as follows: • Aurora Baycare MS Clinic, Green Bay: 4th Friday of every month • Marshfield Clinic MS Center, Marshfield: 3rd Tuesday of every month • ProHealth Care Oconomowoc Physician Center, Oconomowoc: 3rd Friday of every month • Regional Multiple Sclerosis Center, St. Luke’s Medical Center, Milwaukee: 1st Monday, 2nd Thursday, 3rd Wednesday, 4th Tuesday of each month
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• ProHealth Care Neuroscience Center, Waukesha Memorial Hospital, Waukesha: 4th Tuesday of each month • UW Hospital and Clinics Neurology/MS Clinic, Madison: 4th Wednesday of each month Call an MS Navigator Today. MS Navigator is here to help you navigate the challenges of MS. Professional advisors are available during standard business hours, Monday-Friday. Please call 800-344-4867 for personalized service, up-to-date information, and practical resources and referrals. Support Groups. There are nearly 50 MS support groups in Wisconsin and new groups sprout up regularly. For a complete listing including meeting dates, please visit wisMS.org or call 800-242-3358. Sign Up for Action Alerts and Read the Blog. Sign up today to receive Action Alert e-mails. These informative updates will keep you connected to the issues that matter most to individuals with MS. E-mail jeremy.otte@nmss.org for details or call 800-242-3358. You can also read the MS Activist blog to keep up with news on federal-level issues at MSactivist.blogspot.com. Where Do the Dollars Go? 6.5% Management and General 10.2% Fundraising
83.3% Mission
Wisconsin Chapter Calendar of Events MS Research NOW Speaker Series Wausau October 8
Midwest Teleconference Research: Where are we now, where are we going? March 12
Midwest Teleconference Eating for Health Living with MS October 10
MS Awareness Week March 12 - 16 Midwest Teleconference Maximizing Your Physical Therapy for Optimum Benefit April 9
Generation Optimistic Appleton October 22 Midwest Teleconference Hot Flash or MS Moment? November 14
Walk MS Brown County Sunday, April 22
Midwest Teleconference You are Not Alone December 12 2012 Midwest Teleconference Making Connections Thru Social Networking January 9
Midwest Teleconference What About Progressive MS February 13 Birkie Skiers for Cures February 23 - 25
Grafton Saturday, May 5 Manitowoc-Two Rivers Saturday, May 5 Platteville Saturday, May 5 Janesville-Rock River Sunday, May 6 Madison Sunday, May 6
Fond du Lac Saturday, April 28
Milwaukee Sunday, May 6
Menomonee Falls Saturday, April 28
Sheboygan Sunday, May 6
Wausau Saturday, April 28
Midwest Teleconference Me, Myself and I: The Art of Being Your Own Care Partner May 14
Eau Claire-Chippewa Valley Sunday, April 29
MS Snowmobile Tour Carter January 26-29, 2012
Waukesha Sunday, April 29
Fox Cities Sunday, April 29
MS Summit Wisconsin Dells May 20 - 22
Kenosha-Racine Sunday, April 29
MS World Day May 30
La Crosse Sunday, April 29
Midwest Teleconference Give Yourself a Hand: Tools for Everday Life June 11
On the Move Luncheon Milwaukee June 27 On the Move Luncheon Madison June 28 Midwest Teleconference The Cycle of MS Symptoms and Their Effect on Bowel and Bladder July 9 Bike MS: Best Dam Bike Ride August 4 - 5 Midwest Teleconference Spasticity, What’s Under Your Control August 13 Midwest Teleconference MS What a Pain September 10 Challenge Walk MS September 21 - 23 Mud Run TBD
Please visit the wisMS.org Calendar of Events for the latest listing of Chapter activities and Community Events. ÂŽ
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1120 James Drive Suite A Hartland, WI 53029 Mailing Label Changes Please check the appropriate box below, correct the label and return to the Wisconsin Chapter. Name change or misspelled Address change Remove from mailing list Received more than one copy Please send me my MS Connection via e-mail. My e-mail address is: __________________________________________
wisMS.org • Toll Free 1 800 242 3358 • 262 369 4400
Drive and Dedication A Fun Ride
The 29th Annual MS Snowmobile Tour is coming to Carter, Wisconsin January 26-29, 2012. One of Wisconsin’s best and longest-running events, you won’t want to miss the ride or camaraderie of nearly 200 fellow snowmobile enthusiasts.
A Great Cause
During the Tour’s history, dedicated riders have collected more than $6 million in pledges. While participants raise a minimum of $650 in pledges, the Tour provides a turn-key all-inclusive experience including three nights lodging at the Potawatomi Carter Casino Hotel, six complimentary meals, guided trails, mechanical support and more.
Register Today!
Sign up for the MS Snowmobile Tour by calling 1-800-242-3358 or visiting MSsnowmobiletour.org.
Tour proceeds support the National Multiple Sclerosis Society’s mission to drive research for a cure.
AWSC Association of Wisconsin Snowmobile Clubs
Carter, Wisconsin | January 26-29 | 1-800-242-3358 or MSsnowmobiletour.org