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Ms Connection Fall 2013
MS Connection Fall 2013 Fall 2013 issue of the Wisconsin Chapter of the National Multiple Sclerosis Society's publication MS Connection
Society Events Bring People Together Wisconsin Chapter: Where Does the Money Go? 83.6 10.7 5.7 % Wisconsin Chapter Board of Trustees David Rodgers, Chair Briggs & Stratton Corporation Dennis Christiansen Community Advocate Pamela Evason Windermere Wealth Advisors LLC Michael Lutze, Vice Chair Ernst & Young Robert Engel Retired, M&I Bank Paul Jones Harley-Davidson, Inc. Tom Golden, Vice Chair M3 Insurance Solutions, Inc. Paul Jones Harley-Davidson, Inc. Wayne Larsen ATI Ladish LLC Pamela Evason, Vice Chair Windermere Wealth Advisors, LLC Wayne Larsen Ladish Company Foundation James Rose, Treasurer Baker Tilly Virchow Krause, LLP Robert Engel Retired, M&I Bank Mission % Bruce Olson The Marcus Corporation Shelley Peterman Schwarz Meeting Life’s Challenges, LLC Robert Sowinski, Secretary Diversified Insurance Solutions Martin McLaughlin Reinhart Boerner Van Deuren, s.c. Shelley Peterman Schwarz Meeting Life’s Challenges, LLC Kenneth Minor, Past Chair Sonic Foundry, Inc. David Raysich Plunkett Raysich Architects David Raysich Plunkett Raysich Architects Colleen Kalt, President & CEO National MS SocietyWisconsin Chapter Jeffrey Steren Steren Management/McDonald’s Martin McLaughlin Reinhart Boerner Van Deuren, S.C. Fundraising Patricia Raysich Community Advocate % Jeffrey Steren Steren Management/McDonald’s Robyn Turtenwald Community Advocate & General Management Anne Brouwer McMillianDoolittle, LLP Robert Buhler Open Pantry Food Marts of Wisconsin, Inc. Robyn Turtenwald Community Advocate Molly Walsh Groundwork Consulting Molly Walsh Source: 2012 Audited Financial Statement Waisman Center ©2013 National Multiple Sclerosis SocietyWisconsin Chapter MS Connection is a quarterly publication of the National Multiple Sclerosis SocietyWisconsin Chapter. Editors: Amanda Gasper Krueger, Maureen Waslicki Art Directors: Amy Malo, Joan Hartin To comment or share a story idea, call 262-369-4421 or email firstname.lastname@example.org MS Connection | 2 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. % Help Lead the Way A few years back the National Multiple Sclerosis Society asked individuals touched by MS where they wanted the organization to focus its efforts. Without hesitation, thousands from across the country said: “research.” With that in mind, I’m proud to share that the Society continues to fund more MS research than any nonprofit organization in the world. And it does so because of the unyielding commitment of supporters such as you. Your contributions have helped make every MS research success to date possible. And it’s your contributions that will be needed to make every future success a reality. This month more than 100 people will walk in Door County as part of Challenge Walk MS to generate awareness and funds for those touched by MS. (The photo on the cover is from last year’s event.) Also in September, volunteers will host On the Move Madison, an evening of fine food and wine tasting to raise money specifically for research. Many others will hold events or make contributions to help move us toward our ultimate goal: a world free of MS. Great research strides have been made, but even bigger advancements are on the horizon. Join the Movement with a gift of your own – in whatever amount you are able to make – and help ensure that no opportunity is wasted as we work to end MS forever. Visit wisMS.org today to donate, or call the Chapter at 262-369-4400 and pledge to make a difference for all generations to come. In gratitude, Please remember the Wisconsin Chapter in your year-end giving plans. Colleen G. Kalt President & CEO Grants Support Research, Programs and Services The Wisconsin Chapter thanks the following organizations for the grants recently awarded in support of research, programs and services that are critical to people affected by MS. • $15,000 Anonymous • $6,500 Genzyme Corporation, a Sanofi company • $5,000 Racine Community Foundation • $3,000 Teva Pharmaceuticals • $3,000 Biogen Idec • $2,500 EMD Serono • $1,000 Avanir Pharmaceuticals • $1,000 William Stark Jones Foundation • $1,000 Krause Family Foundation • $100 J.D. Nemitz Charitable Fund within the Community Foundation for the Fox Valley Region In total, $38,100 was received in gifts and grants from April to June 2013. If you are connected to a foundation that you would like to suggest for a grant opportunity, or for more information on how you can help, contact Cindy Yomantas at 262-369-4431 or email@example.com. MS Connection | 3 Unique Ways You Have Given E v ery dollar given in support of the MS Movement is meaningful and impactful. Among the donations received, some are raised via inventive, humorous or just plain unexpected ways. Here is a sampling of unique donations given on behalf of those affected by multiple sclerosis. • Each year the De Pere Men’s Club earns funds through a variety of enterprising efforts such as delivering Meals on Wheels for which the county pays mileage and picking up scrap paper at a local paper recycler in exchange for a donation. In turn, they donate those funds to other organizations. In a letter sent to the Wisconsin Chapter with a check for $500, they wrote: “A donation is made to your organization because the membership appreciates your efforts and the very positive effect on our lives and those of the community in general.” “A donation is made to your organization because the membership appreciates your efforts and the very positive effect on our lives and those of the community in general.” - De Pere Men’s Club • Sixth grader Ben B. led the donation of $1,298.61 from Big Bend Elementary School. He held bake sales to raise money for his family’s Walk MS team, in honor of his grandmother, and when the student council considered which charities to support for its annual fundraiser, Ben suggested the National MS Society. They agreed, and all the classes competed in a coin war to see which would collect the most change. One kindergartner, Sebastian P., even brought in $200 in honor of his grandmother and aunt who both have MS. MS Connection | 4 • During its annual conference, Wisconsin Law Enforcement Administrative Professionals (LEAP) raises money for charitable organizations. At its 13th annual conference held June, donations were raised through a silent auction and raffle. The National MS Society-Wisconsin Chapter was selected as one this year’s recipients, receiving a $400 donation. • Four employees at Thrivent Financial for Lutherans were recently recognized as the Members Services Team of the Quarter. As part of the recognition, recipients select a charity of their choice to receive a donation from the company. They chose the National MS Society-Wisconsin Chapter, and a $500 donation was received. • Once a year, staff members at medical software company Epic choose organizations from a list and vote to determine which the company should donate to. This year the staff designated $15,200 to go to the National MS Society-Wisconsin Chapter. The letter accompanying the donation said: “‘Doing good’ is one of Epic’s core philosophies .... We believe that your organization is doing some fine work – ‘doing good’ – so we’re pleased to include you in our charitable giving.” • Reel Brothers’ Harley-Davidson sent in a donation of $1,127 – proceeds from the Mauston-based dealer’s Cows, Curves & Chrome Ride in June. The annual event raises money to benefit MS research. Robyn Reel, assistant general manager of the dealership, has MS, and a member of a local HOG Chapter recently lost a family member to the disease. “The cause is special to all of us at the dealership,” Reel said. Ways You Can Say, ‘I Gave at the Office’ E very year, people nationwide help create a world free of multiple sclerosis by contributing through their employer’s charitable giving campaign. Most campaigns kick off in the fall, providing an easy and efficient way to join the Movement simply by designating an annual pledge to the National MS Society-Wisconsin Chapter. Your donation can be automatically deducted from each paycheck to fund cutting-edge MS research and provide programs and services year-round, helping people affected by MS move their lives forward. Federal government employees and military personnel are eligible to participate in the Combined Federal Campaign (CFC), the nation’s largest workplace giving program. If you participate in the CFC, designate your gift to the Society using code number 36427. Remember to specifically designate the National MS Society-Wisconsin Chapter as the beneficiary so that your gift will be directed accordingly. If your company offers a workplace giving program, look for the Society listed under Community Health Charities of Wisconsin, the largest workplace giving program devoted solely to health issues, or the United Way, which operates local workplace giving programs throughout the state. The installation of ramps that make homes wheelchair accessible is one of the many ways workplace giving campaigns help those living with MS. When your employee giving campaign begins, remember to specifically designate the National MS Society-Wisconsin Chapter as the beneficiary so that your gift will be directed accordingly. Whether you make a one-time donation or give through smaller periodic payroll deductions, your tax-deductible donation is critical to the more than 10,000 children, women and men in Wisconsin affected by multiple sclerosis. Giving campaign contributions are not restricted in any way, meaning they can be used to support the areas of greatest need throughout the year. If your employer doesn’t currently offer a giving program: • T alk to your benefits administrator or call 1-800-344-4867, option #2, to see if the Society can help. • C all Community Health Charities of Wisconsin at 414-918-9100 to establish a workplace giving program at your company or public sector organization. • F ind your local United Way by visiting www.unitedway.org and entering your ZIP code in the upper right corner. MS Connection | 5 Youth Volunteers Play Valuable Role A t age 13, Jacque Walter already has five years of volunteering for the National MS Society under her belt. Her dad has been part of the dRailed cycling team at Bike MS: Best Dam Bike Ride, so Jacque, her mom and her sister have supported the cause by helping serve lunch to participants each year. “The Chapter definitely benefits from the enthusiasm and energy of young volunteers and they benefit by gaining real-world experience and knowing they are helping others,” said Kristin Raeber, senior manager – volunteer engagement and DIY events for the Wisconsin Chapter. “I tell my friends I volunteer for a bike ride that my dad does for MS, which is multiple sclerosis disease,” Jacque said. “If they ask more, I tell them it’s not a disease you really want. They don’t have a cure but they’re researching for one.” More than 100 youth volunteers assisted the Wisconsin Chapter this year, doing everything from setting up at fundraising events to helping in the office. For example, Aaron Bauer, a senior at Brookfield Central High School, volunteered at the Wisconsin Chapter’s Hartland office over the summer, earning hours for credit with the National Honor Society. He helped organize items in the warehouse, assemble folders with important information for event participants and created a spreadsheet for use by office staff. Jacque says she gets involved for friends of At age 13, Jacque Walter her family who have MS. already has five years of And even at her age, she volunteering under her belt. has a keen awareness of the effect volunteers have: “If you help the bikers, maybe they’ll tell more of their friends to come ride.” “I was able to complete lots of small tasks that helped make other people’s work easier,” he explained, adding that he hopes to donate more hours to the Chapter during the coming year. “People were very appreciative of the work I was doing.” Hundreds of volunteers help at the Wisconsin Chapter office and fundraising events each year. Many of these dedicated individuals are youth volunteers, who find there are several benefits to giving their time and talent to an organization: Anyone interested in learning more about youth volunteer opportunities can contact Raeber at 262-369-4436 or firstname.lastname@example.org. •C ommunity service hours are often required by high schools and student groups •V olunteerism can be added to college and scholarship applications • Volunteering as a group is a unique way to socialize while giving back to the community Young volunteers influence their peers to help out as well. According to a survey by DoSomething.org, having friends who volunteer is what most influences a teen to volunteer themselves. MS Connection | 6 Senior Aaron Bauer, along with his mom, Mary Beth, volunteered at the Hartland office during the summer and earned credit for the National Honor Society. Nurse Practitioner Cheryl Blaschuk: Providing focused and comprehensive care at Columbia St. Mary’s Multiple Sclerosis Clinic A dvanced Practice Nurse Cheryl Blaschuk had worked for 10 years with chronically ill pediatric patients when she chose to further strengthen her skills and become a Family Practice Nurse Practitioner in 2000. Although having an established interest in MS through a close family member who has lived with MS for 40 years, Blaschuk, as she describes it, “kind of logically fell into working with and helping MS patients.” After choosing Neurology as her specialty, she soon discovered a professional rapport with other healthcare providers as well as MS patients – both of whom provided her the opportunity to learn more about the disease and its progression, its impact on everyday living and options for treatment. Blaschuk admitted that “I didn’t intend to do this type of work, but sometimes life presents undeniable opportunities to make a positive difference in the well-being of others.” She took that opportunity and spent the next 12 years making a difference at Froedtert Memorial Lutheran Hospital and The Medical College of Wisconsin. She was then approached by Neurologist Michael Connor, D.O., to bring her experience, compassion and skills to a comprehensive MS Clinic at the new Columbia St. Mary’s Hospital on Milwaukee’s East Side. The clinic opened in August of 2012. Today Blaschuk, Dr. Connor and their medical assistant, Toni Ihler, bring together a variety of healthcare professionals to provide in-depth care for MS patients. “Cheryl brings a tremendous and impressive amount of scientific, clinical and Cheryl Blaschuk is the personal expertise to nurse practitioner at our clinic,” Dr. Connor Columbia St. Mary’s said. “After working Multiple Sclerosis Clinic. with Cheryl over the past year developing this clinic from the ground up, I can honestly say that I have yet to meet a healthcare provider more dedicated to the MS community.” The operating philosophy of the clinic fits well with Blaschuk’s own: ���Everyone must work as a team especially in the case of chronic illness.” Blaschuk partners with the clinic staff in managing and coordinating high-quality patient care by using many different specialty services, including rehabilitation services, neuro-psychology consultation, urology, ophthalmology, infusion services and pain management. The Multiple Sclerosis Clinic – located at Columbia St. Mary’s Hospital, 2301 N. Lake Dr. in Milwaukee – opened in August 2012. “Because MS presents differently, every patient needs to be individually assessed in order to determine the best treatment plan,” MS Connection | 7 Continued from Page 7 Blaschuk said. “That’s probably the hardest thing for people to understand: every patient is unique. We are fortunate to have many services available to us through the Columbia St. Mary’s hospital system. In turn, this allows us to truly partner with the patient, our most important partnership, to ensure the best possible outcome.” Partnering with a specialty, focused MS team was exactly what Verna Lou Moschella needed. Diagnosed four years ago, she was told by her physician at that time, she would need to quit working and go on disability. Moschella’s mother, Joy Ulseth, also an MS patient, had recommended Blaschuk. “My mom said, ‘Honey don’t worry, I’m going to call Cheryl,’” recalled Moschella, who has since recommended Blaschuk to three of her friends who have been diagnosed with MS. “Cheryl really listens to what I tell her and gives me recommendations on how to better deal with MS. In my eyes I don’t think there’s anybody better than her. I would follow her to the end of the earth if I had to. I tell everybody that. I don’t have to go from one doctor to another; she recommends the testing, puts in the orders for it, everything. It’s nice to be able to have that one point of contact.” Blaschuk says establishing long-term relationships with patients like Moschella and her mom is the most rewarding part of her work. She also appreciates that the field of MS has allowed her to indulge her interest in science, particularly immunology and neurology. “A waiting room for an MS clinic looks way different than it used to 20-plus years ago,” Blaschuk said. “Today we have the ability to slow the progression and decrease disabilities. We have ways of impacting patients’ lives and making it better for them. That in itself is incredible and being a part of it is truly amazing.” Wisconsin Researcher to Be Inducted Into Society Volunteer Hall of Fame B onnie Dittel, Ph.D., has been selected for induction into the National Multiple Sclerosis Society’s Volunteer Hall of Fame for her work as a top scientific researcher. She is one of only three researchers from across the country to receive the award this year. Dittel and other volunteers will be honored together at the Society’s annual Leadership Conference, Nov. 7-9 in Denver, Colo. Dittel is a senior investigator at the BloodCenter of Wisconsin-Blood Research Institute and an assistant adjunct professor at the Medical College of Wisconsin. She studies immune system regulation as it relates to MS, and most recently received a $450,000 grant from the National MS Society to investigate a molecule that suppresses an MS-like disease in mice. She was a member of the Society’s Research MS Connection | 8 Peer Review Committee from 2007-2012, and one of the panel of speakers at this year’s MS Summit in Pewaukee, Wis. “As a MS researcher, I would like to personally thank everyone who participates in fundraising events for Dr. Dittel recently received the Society,” she has a $450,000 grant from the said. “The money National MS Society. raised is an important source of research funding that increases the amount of research that wouldn’t otherwise be conducted on the cause and treatment of MS.” Research Update Making advances in pediatric MS A n increasing number of medical centers across the United States are collaborating on research on how and why multiple sclerosis happens in young people. This Network of Pediatric MS Centers was initiated in 2006 through a grant from the National Multiple Sclerosis Society. Thanks to its multidisciplinary approach, researchers at participating institutions are gathering important data on the disease, and their work is already yielding valuable information on early MS triggers. “One of the main reasons to study MS in children is that we hope to learn from them what causes MS.” - Dr. Loren Rolak For instance, researchers have been able to unravel features such as distinct characteristics of the disease on the MRI and in the spinal fluid of patients younger than 11. Thus far, the network has learned that MRIs of patients under 11 show larger and more poorly defined MS scars compared to adults, and that MS scars in young patients often go away within a few months, which is very rare in adults. They also observed that the spinal fluid of young patients can show more inflammation than in adults. These findings have helped make the way forward clearer for accurately diagnosing children with MS and providing early treatment to better prevent the onset of disabilities related to the disease. “One of the main reasons to study MS in children is that we hope to learn from them what causes MS,” said Loren Rolak M.D., chair of the Wisconsin Chapter’s Clinical Advisory Committee and Medical Director of the Individuals of all ages who participate in events like Walk MS help fund pediatric research. Marshfield Clinic MS Center. “We might get more ideas as to why MS occurs.” To learn more about pediatric MS and research in the field, visit www.nationalMSsociety.org/ pediatricMS. Pediatric MS Centers of Excellence • Center for Pediatric-Onset Demyelinating Disease at the Children’s Hospital of Alabama (Birmingham, Ala.) • Lourie Center for Pediatric MS Center at Stony Brook University Hospital (Stony Brook, N.Y.) • Mayo Clinic Pediatric MS Center (Rochester, Minn.) • Partners Pediatric MS Center at the Massachusetts General Hospital for Children (Boston, Mass.) • Pediatric MS Center of the Jacobs Neurological Institute (Buffalo, N.Y.) • UCSF Regional Pediatric MS Center (San Francisco, Calif.) There are also local pediatric neurologists who may be familiar with MS in children. Call an MS Navigator at 800-344-4867 for assistance. MS Connection | 9 PAID ADVERTISEMENT An Oral Treatment Option for Relapsing Forms of Multiple Sclerosis (MS) An Oral Treatment Option for Relapsing Forms of Multiple Sclerosis (MS) An informative event for people living with MS and their caregivers. An informative event for people living with MS and their caregivers. Michael Connor, DO Columbia St. Mary's MS Clinic Milwaukee, WI Cheryl Blaschuk NP Columbia St. Mary's MS Clinic Milwaukee, WI Monday, October 7, 2013 at 6:00 PM Central Wednesday, November 20, 2013 at 6:00 PM Central HobNob 277 South Sheridan Road Racine, WI 53403 Joey Gerard’s (Bartolotta Supper Club) 11120 Cedarburg Road Mequon, WI 53092 Space is limited. A light meal will be served. Space is limited. A light meal will be served. To RSVP, please call 1-866-703-6293 or e-mail MSrsvp@ahmdirect.com. To RSVP, please call 1-866-703-6293 or e-mail MSrsvp@ahmdirect.com. Event code: TR226279 (1067475) Event code: TR226287 (1067562) MS.US.PO1497.0313 MS.US.PO1497.0313 An Oral Treatment Option for Relapsing Forms of Multiple Sclerosis (MS) An Oral Treatment Option for Relapsing Forms of Multiple Sclerosis (MS) An informative event for people living with MS and their caregivers. An informative event for people living with MS and their caregivers. Bhupendra Khatri, MD Center for Neurological Disorders Milwaukee Bhupendra Khatri MD Center for Neurological Disorders Milwaukee Tuesday, November 26, 2013 at 12:00 PM Central Monday, December 2, 2013 at 6:00 PM Central Boneﬁsh Grill 18355 West Bluemound Road Brookﬁeld, WI 53005 Maggiano's Little Italy 2500 North Mayfair Road Wauwatosa, WI 53226 Space is limited. A light meal will be served. Space is limited. A light meal will be served. To RSVP, please call 1-866-703-6293 or e-mail MSrsvp@ahmdirect.com. To RSVP, please call 1-866-703-6293 or e-mail MSrsvp@ahmdirect.com. Event code: TR224142 (1054380) Event code: TR226596 (1070083) MS.US.PO1497.0313 PAID ADVERTISEMENT MS.US.PO1497.0313 Couple Finds a New ‘Family’ in Helping Their Daughter ‘Wow, grandma, you really kick butt’ I n November 2011, Stan and Betty Panek’s youngest daughter, Lisa Holder, called to tell them she had been diagnosed with MS. Two days later, the trio had signed up to participate in the MS Snowmobile Tour. “Our daughter was diagnosed with MS on a Friday morning,” Betty said. “Sunday afternoon we received a call from her and she said, ‘Okay, here’s what we are going to do. We’re going to raise $650 each and go to the snowmobile ride for MS in January.’” Stan added, “Of course, whatever my baby asks, I try to do.” Stan and Betty Panek joined the MS Snowmobile Tour in 2012 after their daughter Lisa was diagnosed with MS. Two months later, the couple, who live in Harshaw, joined Holder for the 2012 MS Snowmobile Tour, a weekend of snowmobiling through northern Wisconsin to raise funds for MS research, programs and services. Since then, they’ve continued to participate in the Tour and helped launch Walk MS: Rhinelander. “It means the world to me that my family supports me,” Holder said. “This would be a very lonely struggle without the support of my parents especially.” The Event Weekend The MS Snowmobile Tour is a three-day weekend of snowmobiling, evening celebrations and fun. Participants are divided into color groups based on riding experience and the type of riding they like to do (slower to faster pace); the Paneks and Holder joined the Green Color Group. “Our favorite part of the Tour is being a member of the Green Team,” Betty stated enthusiastically. They rode about 150 miles each day. A fellow member of the Green Group said to the then 80-year-old, “Wow, grandma, you really kick butt,” something Betty calls her finest hour. The Paneks’ granddaughter Lauren reached new heights during a trail game at the 2013 MS Snowmobile Tour. Continued on Page 12 MS Connection | 11 Continued from Page 11 More family members have joined since that first ride in 2012. Their granddaughter (Holder’s daughter) Lauren joined in 2013. Stan said, “My favorite part of last year was watching our 17-year-old granddaughter have the time of her life.” One memory in particular stood out to Stan. The Green Color Group found as many green items as they could for a trail game, one of several played throughout the weekend by each group. “Lauren flew up on some group members’ shoulders, touched a Green Bay Packers sign on the ceiling and we took a picture.” 2014 MS Snowmobile Tour Holder originally joined the MS Snowmobile Tour within months of a diagnosis with the mentality that she “was going to win” by raising funds and awareness of MS. Since then, she said, “MS has taught me to slow down. Every day that I can get out of bed and go to work, I smile because that means MS has not taken me over. I have taken it over. I have also learned to compromise and have learned my physical restrictions.” Walk MS: Rhinelander The Paneks found a new way to be involved with the Wisconsin Chapter this past spring. “We were thinking of having a fundraiser when we saw an advertisement for the Walk MS: Rhinelander Volunteer Committee,” Betty said. Walk MS: Rhinelander was a new Walk MS location in 2013. “We went to the first meeting, met some friends and were hooked. We wanted to work it, so we did.” Stan was the volunteer coordinator. He said, “The event was really satisfying. The turnout was amazing. We exceeded our goals of attendance and money raised.” “Whatever my baby asks, I try to do.” - Stan Panek Betty added, “You have to remember that Rhinelander is a small town and we had 305 participants in the walk, which we thought was spectacular.” More than $36,000 was raised at Walk MS: Rhinelander. “They have gone above just going with me on the MS Snowmobile Tour and want to help fight to find a cure for the next generation,” Holder said of her parents. MS Connection | 12 Stan and Betty Panek, daughter Lisa Holder and granddaughter Lauren were part of the MS Snowmobile Tour’s Green Color Group. The family is already looking forward to the 2014 Tour, January 23-25. “The MS Snowmobile Tour is not only a good cause, it’s a good time,” Holder said. “It is a wonderful event that feels like a family reunion and I cannot wait to go to my third year. “I recommend the Tour to anyone with MS or anyone that knows someone with MS. The support is overwhelming. It feels so good to know that I am not alone in this battle against MS.” Stan added, “We have taken on the challenge to raise enough funds to conquer MS in our lifetimes.” Power Research While Riding a Sled MS Snowmobile Tour moves to Lac du Flambeau for 31st annual ride T he MS Snowmobile Tour brings together snowmobile enthusiasts for a fun weekend that is all inclusive and fully supported. Held January 23-25, 2014, the ride will be headquartered at Lake of the Torches Resort in Lac du Flambeau, Wis. Located in Vilas County, the area features more than 600 miles of groomed trails. Win a 2014 UT V & Trailer! The experience includes: ❋T hree-nights lodging at Lake of the Torches Resort ❋ S ix meals (2 breakfasts, 2 lunches, 2 dinners) ❋G uided rides on groomed trails ❋O n-site mechanical support ❋E vening entertainment ❋A nd more Participants pay a $45 registration fee and agree to raise a minimum of $650 in pledges – money that funds MS-related research. (More than $6.7 million has been raised throughout the event’s history.) Register for the MS Snowmobile Tour online at MSsnowmobiletour.org or by phone at 262-369-4400 or 800-242-3358. Anyone registering by November 30 will receive a free long-sleeve commemorative T-shirt. The MS Snowmobile Tour Volunteer Committee is raffling off a 2014 Polaris Ranger utility task vehicle (UTV) with trailer. Other prizes include cash awards and free registration for the 2015 MS Snowmobile Tour. Buy your tickets for $10 each by emailing MSsnowtourraffle@gmail.com or visiting the Wisconsin Chapter office. The drawing will be held January 25, 2014 (you do not need to be present to win). Don’t own your own snowmobile? No problem! Options are available for everyone who wants to ride. Call the Wisconsin Chapter office at 262-369-4400 or 800-242-3358 and ask for details. MS Connection | 13 Employer Accommodation: When Helping Hurts By Tom Bush U nless your impairment meets or equals one of those in the Social Security Administration’s Listing of Impairments, to be found eligible for disability benefits, you have the burden of proving that you cannot perform any “past relevant work” done in the past 15 years. This is called the “claimant’s burden.” Many people with MS who have significant neurological findings meet the Listing of Impairments for Multiple Sclerosis. Those with less severe MS must fulfill the claimant’s burden of showing that they cannot do past relevant work. Fulfilling the claimant’s burden does not necessarily win your case. There is usually more to prove, but it gets you over a major hurdle. Qualifying for past relevant work Not all work done in the past 15 years qualifies as past relevant work. To qualify, the work must have been “substantial gainful activity,” which is determined based on earnings. The amount changes yearly; in 2013 it is $1,040 per month. Thus, if you’re working at a job where you earn more than $1,040 per month, your job qualifies as past relevant work. Sometimes when your earnings are more than the substantial gainful activity amount, if it is determined that you are being paid more than your work is worth, your work won’t count as substantial gainful activity and therefore won’t qualify as past relevant work. This happens most often when someone is working for a relative. Also to qualify, the job must have been done long enough for you to learn how to do it. Jobs done only briefly do not qualify. To prove that you cannot do past relevant work, you must be able to explain why you cannot do that job today as you performed it (even if the job no longer exists). As a rule, inability to MS Connection | 14 Wisconsin’s Tom Bush shares SSDI expertise gleaned over 20 years. perform past relevant work is easy to explain: “I can no longer be on my feet as much as I had to on that job.” “I can’t lift as much as I had to lift on that job.” “I can’t work as many hours per week as I worked on that job.” There is one circumstance in which proof of inability to do past relevant work can be very difficult to prove. If you had a sympathetic employer who made your job easier, accommodating your disability under the Americans with Disabilities Act, you must prove that you cannot do the job as you performed it. As a rule, when figuring out if someone is disabled, SSA ignores the possibility that a job could be done with accommodations. But when you have actually done the job with accommodations, you must be able to demonstrate that you can longer do the job that way. Many times, a person with MS assumes that he or she can stop working at an accommodated job at any time and “go on disability.” This is clearly true only for those people whose MS meets SSA’s Listing of Impairments. The rest must prove they cannot do accommodated jobs as they performed them. Thus, before you stop working at an accommodated job that you remain capable of doing, talk with your neurologist about whether your MS meets SSA’s Listing of Impairments. Otherwise, it could be very difficult to be found disabled. Tom Bush is the preeminent expert on SSDI in Southeast Wisconsin. A Wisconsin Chapter volunteer for 20 years, he was inducted into the National MS Society’s Volunteer Hall of Fame in 2008. Tom’s website is www.tebush.com. In people with MS— Walking better matters Only AMPYRA® (dalfampridine), an oral medication, improves walking in people with multiple sclerosis (MS). AMPYRA is not a disease-modifying treatment (DMT). DMTs are not indicated to treat walking in people with MS. AMPYRA can be taken with or without a DMT. AMPYRA® (dalfampridine) is indicated as a treatment to improve walking in patients with MS. This was demonstrated by an increase in walking speed. IMPORTANT SAFETY INFORMATION Do not take AMPYRA if you have ever had a seizure, or have certain types of kidney problems, or are allergic to dalfampridine (4-aminopyridine), the active ingredient in AMPYRA. Take AMPYRA exactly as prescribed by your doctor. You could have a seizure even if you never had a seizure before. Your chance of having a seizure is higher if you take too much AMPYRA or if your kidneys have a mild decrease of function, which is common after age 50. Your doctor may do a blood test to check how well your kidneys are working, if that is not known before you start taking AMPYRA. AMPYRA should not be taken with other forms of 4-aminopyridine (4-AP, fampridine), since the active ingredient is the same. Visit Ampyra.com to find out more about a FREE* TRIAL. *Limitations and Restrictions apply. In two pivotal trials 35% and 43% of patients taking AMPYRA responded to treatment vs. 8% and 9% of patients taking placebo. Talk to your doctor to see if AMPYRA may be right for you. AMPYRA may cause serious allergic reactions. Stop taking AMPYRA and call your doctor right away or get emergency medical help if you have shortness of breath or trouble breathing, swelling of your throat or tongue, or hives. Please see the full Patient Medication Guide on the following page. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/ medwatch, or call 1-800-FDA-1088. AMPYRA® is a registered trademark of Acorda Therapeutics®, Inc. AMPYRA is marketed by Acorda Therapeutics, Inc. and is manufactured under license from Alkermes Pharma Ireland Ltd. © 2013 Acorda Therapeutics, Inc. All Rights Reserved. 05/13 AMP2446 MS Connection | 15 PAID ADVERTISEMENT MEDICATION GUIDE FOR AMPYRA® (am-PEER-ah) (dalfampridine) Extended Release Tablets Read this Medication Guide before you start taking AMPYRA and each time you get a refill. There may be new information. This information does not take the place of talking with your doctor about your medical condition or your treatment. What is the most important information I should know about AMPYRA? AMPYRA can cause seizures. • You could have a seizure even if you never had a seizure before. • Your chance of having a seizure is higher if you take too much AMPYRA or if your kidneys have a mild decrease of function, which is common after age 50. • Your doctor may do a blood test to check how well your kidneys are working, if that is not known before you start taking AMPYRA. • Do not take AMPYRA if you have ever had a seizure. • Before taking AMPYRA tell your doctor if you have kidney problems. • Take AMPYRA exactly as prescribed by your doctor. See “How should I take AMPYRA?” Stop taking AMPYRA and call your doctor right away if you have a seizure while taking AMPYRA. What is AMPYRA? AMPYRA is a prescription medicine used to help improve walking in people with multiple sclerosis (MS). This was shown by an increase in walking speed. It is not known if AMPYRA is safe or effective in children less than 18 years of age. Who should not take AMPYRA? Do not take AMPYRA if you: • have ever had a seizure • have certain types of kidney problems • are allergic to dalfampridine (4-aminopyridine), the active ingredient in AMPYRA What should I tell my doctor before taking AMPYRA? Before you take AMPYRA, tell your doctor if you: • have any other medical conditions • are taking compounded 4-aminopyridine (fampridine, 4-AP) • are pregnant or plan to become pregnant. It is not known if AMPYRA will harm your unborn baby. You and your doctor will decide if you should take AMPYRA while you are pregnant. • are breast-feeding or plan to breast-feed. It is not known if AMPYRA passes into your breast milk. You and your doctor should decide if you will take AMPYRA or breast-feed. You should not do both. Tell your doctor about all the medicines you take, including prescription and non-prescription medicines, vitamins and herbal supplements. Know the medicines you take. Keep a list of them and show it to your doctor and pharmacist when you get a new medicine. How should I take AMPYRA? • Take AMPYRA exactly as your doctor tells you to take it. Do not change your dose of AMPYRA. • Take one tablet of AMPYRA 2 times each day about 12 hours apart. Do not take more than 2 tablets of AMPYRA in a 24-hour period. • Take AMPYRA tablets whole. Do not break, crush, chew or dissolve AMPYRA tablets before swallowing. If you cannot swallow AMPYRA tablets whole, tell your doctor. • AMPYRA is released slowly over time. If the tablet is broken, the medicine may be released too fast. This can raise your chance of having a seizure. • AMPYRA can be taken with or without food. • If you miss a dose of AMPYRA, do not make up the missed dose. Do not take 2 doses at the same time. Take your next dose at your regular scheduled time. • If you take too much AMPYRA, call your doctor or go to the nearest hospital emergency room right away. • Do not take AMPYRA together with other aminopyridine medications, including compounded 4-AP (sometimes called 4-aminopyridine, fampridine). PAID ADVERTISEMENT MS Connection | 16 What are the possible side effects of AMPYRA? AMPYRA may cause serious side effects, including: • serious allergic reactions. Stop taking AMPYRA and call your doctor right away or get emergency medical help if you have: – shortness of breath or trouble breathing – swelling of your throat or tongue – hives • kidney or bladder infections See “What is the most important information I should know about AMPYRA?” The most common side effects of AMPYRA include: • urinary tract infection • trouble sleeping (insomnia) • dizziness • headache • nausea • weakness • back pain • • • • • • • problems with balance multiple sclerosis relapse burning, tingling or itching of your skin irritation in your nose and throat constipation indigestion pain in your throat Tell your doctor if you have any side effect that bothers you or that does not go away. These are not all the possible side effects of AMPYRA. For more information, ask your doctor or pharmacist. Call your doctor for medical advice about side effects. You may report side effects to the FDA at 1-800-FDA-1088. How should I store AMPYRA? • Store AMPYRA at 59°F to 86°F (15°C to 30°C). • Safely throw away AMPYRA that is out of date or no longer needed. Keep AMPYRA and all medicines out of the reach of children. General Information about the safe and effective use of AMPYRA Medicines are sometimes prescribed for purposes other than those listed in a Medication Guide. Do not use AMPYRA for a condition for which it was not prescribed. Do not give AMPYRA to other people, even if they have the same symptoms that you have. It may harm them. This Medication Guide summarizes the most important information about AMPYRA. If you would like more information, talk with your doctor. You can ask your pharmacist or doctor for information about AMPYRA that is written for health professionals. For more information, go to www.AMPYRA.com or call 1-800-367-5109. What are the ingredients in AMPYRA? Active ingredient: dalfampridine (previously called fampridine) Inactive ingredients: colloidal silicon dioxide, hydroxypropyl methylcellulose, magnesium stearate, microcrystalline cellulose, polyethylene glycol, and titanium dioxide. Distributed by: Acorda Therapeutics, Inc. Ardsley, NY 10502 Issued 01/2013 This Medication Guide has been approved by the U.S. Food and Drug Administration. AMPYRA® is a registered trademark of Acorda Therapeutics®, Inc. Manufactured for Acorda under license from Alkermes Pharma Ireland Limited (APIL), Athlone, Ireland, utilizing APIL’s MatriX Drug Absorption System (MXDAS®) technology. MXDAS® is a registered trademark of Alkermes Pharma Ireland Limited (APIL). U.S. Patent Nos.: US 5,540,938 and US 8,007,826 The stylized Acorda logo is a registered trademark of Acorda Therapeutics®, Inc. ©2013, Acorda Therapeutics, Inc. All rights reserved. 0113427ART-0 PAID ADVERTISEMENT MS Connection | 17 How We Move It Wisconsin Chapter News and Notes MS Clinical Care Connection In addition to the clinical bulletins, expert opinion papers and guides to talking with patients, the National MS Society offers MS Clinical Care Connection, a quarterly e-newsletter for neurologists and other healthcare professionals. If you’re a healthcare professional and not already receiving the e-newsletter, email eNews@nmss.org to be added to the mailing list. Past editions have focused on topics such as disease-modifying therapies, cognition and rehabilitation. College Scholarship Applications The National MS Society’s scholarship program exists to help highly qualified students with MS or who have a parent with MS achieve their dreams of going to college. Applications for next year’s scholarships will be available beginning October 1 and must be submitted by January 15, 2014. For information, call 1-800-344-4867 or visit www.nationalMSsociety.org/scholarships. Nearly $1.2 million was awarded to 679 scholars across the country in 2013, including $43,000 to 21 students in Wisconsin. Bringing MS Awareness to the Silver Screen The National MS Society-Wisconsin Chapter is proud to be a community partner for this year’s Milwaukee Film Festival presentation of “When I Walk,” an award-winning documentary by Jason DaSilva, a 26-year-old filmmaker who was diagnosed with MS and created a hopeful, inspiring film about what it’s like to live with the disease. Laura Sowinski and her daughter Morgan met with State Representative Don Pridemore (R-22nd District) and other officials in Madison for World MS Day on May 29. They and other volunteers delivered more than 800 letters to 83 state legislators thanking them for their past support of MS-related issues and urging them to continue to do so. The letters were collected at Walk MS locations throughout the state in April and May. MS Connection | 18 The 2013 Milwaukee Film Festival will screen 240 films from 44 different countries during its 15-day run, Sept. 26-Oct. 10. “When I Walk” will be shown October 6 at 3:30 p.m. and October 9 at 4:30 p.m. at the Fox-Bay Cinema, and October 7 at 2:30 p.m. at the Landmark Oriental Theater. Tickets are $10 each. Visit mkefilm.org for details. Society Leadership Conference Bonnie Dittel, Ph.D., will be one of three scientific researchers from across the country inducted into the National MS Society’s Volunteer Hall of Fame during the Society’s annual Leadership Conference, November 7-9 in Denver, Colo. (For more on Dr. Dittel’s award, see Page 8.) An inaugural event to fund MS Research NOW Enjoy an evening that will include: Thursday, September 26, 2013 6 - 8:30 p.m. Madison’s Children’s Museum 100 N. Hamilton Street, Madison Admission is $50 per person R.S.V.P. to Jordan Barclay at email@example.com or 262-369-4404 • • • • A sampling of Madison’s acclaimed restaurants MS research update by Aaron Field, M.D., Ph.D. Music by members of Dr. Field’s band, Fringe Field Silent auction (Packers tickets, fine dining packages and much more) On the Move Madison is a fundraising event for adults benefiting the National Multiple Sclerosis SocietyWisconsin Chapter in support of critical research initiatives to stop disease progression, restore lost function and end MS forever. Contact Molly Walsh at mwalsh@groundwork consulting.org with questions or for sponsorship opportunities. 2014 MS Summit Date Announced Mark your calendar for the 2014 MS Summit, returning to the Country Springs Hotel in Waukesha on March 15. Last year’s event was attended by nearly 200 people affected by MS and featured some of Wisconsin’s most esteemed MS researchers and physicians. Watch for more details as they become available. of a team of runners who helped push her in an adult disability stroller for the final 12-mile relay segment. Jill has MS and is the mother of Ashley Kumlien, a life-long runner who founded MS Run the US. The relay began in April in California and included a team of 16 runners who each completed the equivalent of a marathon every day during their assigned segment of the relay. To date, $170,000 has been raised. To donate, visit msruntheus.com/ donate-now. Annual Meeting The Wisconsin Chapter’s Annual Meeting is scheduled to be held Thursday, December 5. More information be posted on wisMS.org. MS Run the US MS Run the US, the 3,000-mile relay across the country to raise awareness and money for MS research through the National MS Society, came to a successful completion September 6 when Jill Kumlien, inspiration for the relay, crossed the finish line in New York with the support MS Run the US was founded by Ashley Kumlien in honor of her mother, Jill. MS Connection | 19 Bike MS: TOYOTA Best Dam Bike Ride Thank You 2013 Sponsors SM SM SM MS Connection | 20 Marking a Major Milestone Bike MS: TOYOTA Best Dam Bike Ride Celebrates 30 Years The 30th Annual Bike MS: TOYOTA Best Dam Bike Ride was one to remember with more than 1,700 cyclists and volunteers living healthy, changing lives, inspiring hope and powering research through one of Wisconsin’s longest-running and most well respected cycling events. The event included two days of riding, a celebration program and a special gift from Mother Nature: beautiful weather throughout the entire weekend. Riders and volunteers raised more than $1 million at the ride, held August 3 and 4, to support MS research, programs and services. Donations are encouraged to help reach the event’s $1.5 million goal and can be made by phone at 262-369-4400 and online at wisMS.org (click on “Donate”). To support a specific rider or team, or to register for next year’s Bike MS: TOYOTA Best Dam Bike Ride, August 2 and 3, 2014, visit bestdambikeride.org. 30 Yea rs Supporting the MS Movement Best Dam Bike Ride Awards Several honors were awarded during the Ride weekend. Congratulations to the following: Raymond Proeber 2012 Top Rookie Fundraiser Chuck’s Athletic Supporters 2012 Top Team Chuck Scherwinski 2012 Top Fundraiser MSPD Best Team Jersey Lucky’s Charms Best Rookie Team Name Team Legstrong Best Rider Village Decorations Dave Jaehn Best Rider Costume Dennis Olson Golden Day Award MS Connection | 21 Estate Planning – Plan for the Future Today By Pam Evason W e all know unexpected and unfortunate events can and do occur. And while no one can predict the future, we can all prepare for it today. Analyzing your affairs and formalizing an estate plan now can prevent additional pain and confusion (not to mention financial and legal burdens) for your loved ones during an already difficult time. seek their permission now. Answering the difficult questions before meeting with an attorney helps prepare you mentally, but also saves valuable time and money throughout the process. An estate plan is a collection of documents outlining how you want your money and other assets distributed in the event of your death, as well as other important matters such as custody of minor children and designation of power of attorneys. Questions to consider is Managing Director include: at Windermere Wealth • Who should inherit Advisors, LLC and serves on the Wisconsin your assets and in Chapter Board of what percentages? • Who should care for Trustees. your minor children? • How much money will be needed for their care/education? • Who should manage your financial affairs if you become incapacitated? • Who can make medical decisions on your behalf if you become incapacitated and what do you want those decisions to be? • Who should be responsible for distributing your assets? • Do you have any personal property that you want to specifically gift (e.g., family heirlooms)? Below are four steps to help get your affairs in order and make things easier for the people you love. Take Inventory Taking stock of what you own is the first step in knowing how best to protect it. Create a list of all your financial and physical assets, as well as amounts you owe. Possible items to consider include: • Real estate – home and vacation property • Personal property – car, furniture and valuables (artwork, jewelry) • Savings and investments – bank accounts, brokerage accounts, retirement accounts, savings bonds and pensions • Insurance policies • Business interests • Liabilities – mortgages, lines of credit, credit cards any other debt Answer Essential Questions Give some careful thought to how you want your affairs to be settled. Determine the individuals you want to act on your behalf and MS Connection | 22 MS Connection | 22 Pam Evason, CFA, CPA, Put Your Estate Plan Into Action Using your asset inventory, determine which assets and insurance policies have beneficiaries already assigned to them. Review these designations, complete any that are missing and ensure that they are in agreement with your wishes. Next, select an estate planning attorney to assist you with formalizing your estate plan (consider asking friends, family or trusted advisors for a recommendation). Based on your specific Continued on Page 23 Wisconsin Chapter Calendar of Upcoming Events MS Research NOW Speaker Series Milwaukee September 28 Teleconference Impacts of the Affordable Care Act October 14 MS Snowmobile Tour January 23-25, 2014 Teleconference MS and Menâ€™s Sexual Health January 13, 2014 Teleconference Recognizing Relapses November 11 Teleconference Just the Basics â€“ for those Newly Diagnosed with MS February 10, 2014 Wisconsin Chapter Annual Meeting December 5 walk ms Dates to be announced soon Teleconference Managing Stress with MS December 9 Please visit wisMS.org for the latest listing of Chapter activities and community events. Continued from Page 22 situation and needs, your estate planning attorney will draft the necessary documents, which may include durable medical and financial power of attorneys, a will and trust documents if appropriate. Communicate, Secure and Review Your Estate Plan Once everything is finalized, ensure that all named individuals have copies of the relevant documents and fully understand their roles. Estate planning documents should be stored in a secure location. You may also wish to document and store other key personal information, such as your wishes for your memorial service/funeral, computer log-in information and passwords (online banking/ investing, bill payment sites, social media sites) and key contacts. Finally, set a reminder for yourself to review your estate plan annually or after any major life event. There is no question that estate planning is a difficult and uncomfortable subject to consider. However, instead of focusing on the negatives of this process, focus on the benefits of having these matters properly handled and the people you are helping to protect. You will find this to be a worthwhile process that will bring you great peace of mind. Pam Evason, CFA, CPA is Managing Director at Windermere Wealth Advisors, LLC, an investment advisory firm located in Milwaukee, Wis. If you have questions or comments, please contact her at 414-716-6150 or firstname.lastname@example.org. This article is for informational purposes only. It is not a substitute for professional guidance and assistance in planning your financial future. The matters discussed here are provided as a starting point for further discussions with an investment professional familiar with your specific situation. MS Connection | 23 Non-Profit Organization U.S. Postage PAID A Publication of the Multiple Multiple Sclerosis Society-Wisconsin Chapter A Publication ofNational the National Sclerosis Society-Wisconsin Chapter 1120 James Drive Suite A Hartland, WI 53029 Milwaukee, WI Permit No. 2868 Wisconsin Chapter office hours are 8:30 a.m. to 4:30 p.m. Monday through Friday. ® A Special Message from MS Researcher, Dr. John Fleming I am writing to you today to ask that you make a gift to support the MS research NOW fundraising campaign. My wife, Barbara, and I have made our donation, just as we do every year. We believe in the power of research, and not only because my colleagues are brilliant MS researchers and clinicians who have dedicated their lives to this cause. We believe in our hearts that research can change lives. And believing this, we feel it is an honor to support this fundraising effort. We also know that it will take all of us – researchers, event volunteers, donors, event participants, friends and family – to create the world that we want: a world free of MS. No one will do this for us. We must lead the way. During my more than 40 years of clinical practice and as an MS researcher myself, I have been touched by MS in ways I never imagined. My patients, my colleagues, the Society’s donors and volunteers have all inspired me and challenged me. Your contributions have helped make every MS research success to date possible. It will continue to take all of us to keep MS research funded and to keep the movement alive. Now is the time. The opportunities are exciting and we don’t want even one research opportunity to slip through our fingers. Make your gift today. No gift or commitment is too small. Remember it will take all of us, but together we can ensure that no research opportunity is wasted. Please join me and help achieve our shared goal – a world free of MS. With gratitude, John O. Fleming, M.D. Professor of Neurology, University of Wisconsin School of Medicine and Public Health Multiple Sclerosis Director, UW Hospital Health and Clinics Member, Clinical Advisory Committee, National MS Society-Wisconsin Chapter Visit wisMS.org today to make your gift.