MS Connection Winter 2013
Winter 2013 issue of MS Connection, a publication of the National Multiple Sclerosis Society-Wisconsin Chapter
Big Cheese Autumn Neugent is a Top Walk MS Fundraiser 14 0 2 l a C e I r a d n nsi de Wisconsin Chapter: Where Does the Money Go? 83.6 10.7 5.7 % Robert Engel Retired, M&I Bank Wisconsin Chapter Board of Trustees David Rodgers, Chair Briggs & Stratton Corporation Pamela Evason Windermere Wealth Advisors LLC Michael Lutze, Vice Chair Ernst & Young Paul Jones Harley-Davidson, Inc. Tom Golden, Vice Chair M3 Insurance Solutions, Inc. Wayne Larsen ATI Ladish LLC Pamela Evason, Vice Chair Windermere Wealth Advisors, LLC Mission Martin McLaughlin Reinhart Boerner Van Deuren, S.C. % James Rose, Treasurer Baker Tilly Virchow Krause, LLP Bruce Olson The Marcus Corporation Shelley Peterman Schwarz Meeting Life’s Challenges, LLC Robert Sowinski, Secretary Diversified Insurance Solutions David Raysich Plunkett Raysich Architects Colleen Kalt, President & CEO National MS SocietyWisconsin Chapter Fundraising Patricia Raysich Community Advocate % Jeffrey Steren Steren Management/McDonald’s Robyn Turtenwald Community Advocate & General Management Kenneth Minor, Past Chair Sonic Foundry, Inc. Dennis Christiansen Secured Retirement Strategies Group, LLC Robert Engel Retired, M&I Bank Paul Jones Harley-Davidson, Inc. Wayne Larsen Ladish Company Foundation Martin McLaughlin Reinhart Boerner Van Deuren, s.c. Shelley Peterman Schwarz Meeting Life’s Challenges, LLC David Raysich Plunkett Raysich Architects Jeffrey Steren Steren Management/McDonald’s Anne Brouwer McMillianDoolittle, LLP Robyn Turtenwald Community Advocate Robert Buhler Open Pantry Food Marts of Wisconsin, Inc. Molly Walsh Groundwork Consulting Molly Walsh Source: 2012 Audited Financial Statement Waisman Center ©2014 National Multiple Sclerosis SocietyWisconsin Chapter MS Connection is a quarterly publication of the National Multiple Sclerosis SocietyWisconsin Chapter. Editor: Amanda Gasper Krueger Content Editor: Maureen Waslicki Art Directors: Amy Malo, Joan Hartin To comment or share a story idea, call 262-369-4421 or email email@example.com 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. % Remember to Make a Mark for MS Dear Friends, Usually this letter includes the latest news about research, programs or volunteer opportunities. This time, I am going to be a bit more cut-and-dry and share two points, both of which concern what we all want most: more opportunities to make a difference. The first item is our Make a Mark for MS tax check-off program. You’ll find more information about this program in this issue. Bottom line: when you check the donation box on your state income tax form, you help individuals living with MS in Wisconsin stay independent in their homes. Going forward, if we don’t increase our contributions, the Society may be cut from the program. So this year when you complete your taxes, Make a Mark for MS and make a difference. The second piece of business is that to make sure we operate as seamlessly as possible with our home office and the other state Chapters, the Wisconsin Chapter intends to dissolve its status as a separate independent Wisconsin corporation. It will remain as the National Multiple Sclerosis Society-Wisconsin Chapter. We believe this action will assist in furthering the Society’s mission of mobilizing people and resources to drive research for a cure and address the challenges of those affected by MS. As currently contemplated, the Wisconsin Chapter’s dissolution (along with the corporate dissolution of a handful of other Society Chapters that remain separately incorporated), will occur shortly after its approval by the Chapter’s membership base. The dissolution will not affect how we operate or the services we provide. It will simply add internal operational efficiencies, including some cost savings. On March 15, our Board of Trustee members will present the dissolution at the MS Summit, which will be held in Waukesha. I hope you will be able to attend the MS Summit to hear about the leadership role the Society continues to play in driving MS research and also to show your support of our continuing efforts to increase operational efficiencies. As always, your feedback is important, so please contact me if you have questions about the work of the Society. And last but certainly not least, I wish you and everyone engaged in the mission the warmest wishes for the holiday season. Colleen G. Kalt President & CEO Consider the change you can make in the world of MS through the Make a Mark for MS tax check-off program. 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: Olive I. & Eunice J. Toussaint Foundation, Inc.; A. O. Smith Foundation, Inc.; Gordon Flesch Charitable Foundation; Jack DeLoss Taylor Charitable Trust; Jerome J. & Dorothy H. Holz Family Foundation; John and Ann Gillen Family Fund within the Community Foundation for the Fox Valley Region; and Waukesha Kiwanis Foundation, Inc. In total, $29,750 was received in gifts and grants from July to September. 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 firstname.lastname@example.org. MS Connection | 3 Put Your Wisconsin Income Tax Form to Even Better Use ‘Make a Mark for MS’ with a tax check-off donation F or one young Milwaukee-area mother whose MS symptoms were exacerbated in the summer, it meant purchasing an air conditioner. For a Beloit-area woman with MS who is legally blind, it meant paying for in-home therapy that kept her mobile. For a Janesville man whose MS requires the use of a wheelchair, it meant installing a ramp for his house that allowed him the freedom to go outside again. “Without the tax check-off funds, it will become more difficult to provide financial assistance to improve quality of life for clients and help them remain independent. For some that ASSISTANCE MADE POSSIBLE Examples of the types of assistance the Make a Mark for MS tax check-off donations makes possible include: • Physical therapy and orthotic equipment to help clients maintain their ability to walk • Power seat installation in handicapaccessible vehicles to help clients get into and out of their vehicles • Home improvements to widen doorways and install ramps, lifts or bathroom grab bars for wheelchair and walker accessibility • Software so clients who are unable to see or move well can use their computers MS Connection | 4 “Donations through the Make a Mark program have been declining at a time when more people need help financially,” said Wisconsin Chapter President and CEO Colleen Kalt. “MS can cost families an average of $70,000 each year in medical costs and lost wages. We try to offset those expenses by providing financial assistance; but without donations through the tax check-off program, more Wisconsinites with multiple sclerosis could be left to struggle.” Every dollar raised through the Make a Mark for MS tax check-off program stays in Wisconsin and goes directly to financial assistance that improves the quality of life for those diagnosed with MS and helps them maintain their independence. Visit wisMS.org or call 800-242-3358 for more information. What can you do? 1. Make a Mark for MS when you fill out your 2013 Wisconsin state income tax form by designating a donation for multiple sclerosis. 2. Tell your fellow Wisconsinites about the program and ask them to Make a Mark too. 3. Ask your accountant or tax expert to help promote the program on your behalf. Tear out and keep this page with your 2013 tax preparation papers. “It” is Wisconsin’s tax check-off program, which gives taxpayers the opportunity to designate a contribution on their state income tax form to certain nonprofit causes, including multiple sclerosis. An average of $80,000 has been donated for MS each year throughout the history of the program. means the difference between maintaining their ability to live in their own homes and having to move to long-term care facilities such as nursing homes,” said Kristen Ruhl, mission delivery manager for the National MS SocietyWisconsin Chapter. ‘How the Tax Check-off Program Helped Me’ Make a Mark donations give Wisconsin woman a new outlook on life C hrissy Aukofer was mourning the loss of her 27-year-old son when she was diagnosed with primary progressive MS in 2010. That same year, her stepmother passed away, followed a year later by the death of her father. The depression that understandably followed was something Chrissy recognized and decided she needed to do something about. membership fee and the Therapeutic Chair Yoga and MS Water Exercise classes, which she says have made a remarkable difference in her MS symptoms. Painful leg cramps that she used to deal with nightly have subsided, and she has better balance and stability. “It’s easier now to put that pair of pants on and not fall over,” joked Aukofer, who works as a teacher’s aid. Even more importantly for her, Aukofer says she doesn’t feel the depression that was taking over her life, and she has made a network of friends among her fellow classmates at the Fitness Center. Her husband, Greg, sees the difference too. Chrissy Aukofer credits the fitness classes funded by tax check-off donations for helping her overcome depression and reduce her MS symptoms. She tried taking daily walks at Lapham Peak State Park, where she had a bench placed in her son’s memory, but that grew more difficult as her MS progressed. Then her husband found ProHealth Care’s West Wood Health and Fitness Center in Pewaukee, which offers fitness classes specifically designed for people with MS. The problem was that health care costs and paying for their daughter’s college, among other financial difficulties, left little extra to cover the cost of joining. That’s where donations given through the Make a Mark for MS Tax Check-off program came in. Aukofer’s was one of 163 requests for financial assistance granted throughout the year. She asked for help paying for the “It’s helped her spirit tremendously to be able to go (to West Wood) and stay in shape. It’s improved her balance. Her memory and speech have gotten better,” he described. “It’s been the best medicine of everything the doctors have talked to her about.” And now Aukofer, 50, has an added incentive for continuing to exercise. “I want grandchildren. My daughter is 21 and she’s in college, so the only way I’m going to get them is to stay healthy.” Aukofer (left) with certified chair yoga instructor Cindy Stark. She is grateful to those who donated to the Make a Mark for MS tax check-off program. “I’m so blessed that (those who donated) are helping me. The cost of MS medication alone is so outrageous,” she said. “What better way to help than by making a donation through your tax form? You’re helping people in your own state.” MS Connection | 5 MS Scholar, Volunteer and Now a Researcher College student Faatima Khan gives her time for MS W hen Faatima Khan was a freshman in high school, she randomly chose multiple sclerosis as the topic for a research project for her health class. She worked for several months on the paper. A week after she turned it in, her mother told her the news: she was diagnosed with MS. “I had just spent two to three months listening to all these stories about people with MS and all these bad things that could happen,” Khan said. “It was overwhelming.” Khan’s mom had an unusual path to diagnosis. “When I was younger, she had a brain tumor,” Khan explained. “She had follow-up MRIs and that is how they found the lesions.” And while the news was overwhelming for Khan, she appreciated that she had knowledge of the disease. Her mother, who had been a doctor, wanted Khan and her two brothers to know how to give her injections of her diseasemodifying therapy, something Khan described as “hard to do.” Giving Back “When my mom was diagnosed with MS, that was when I volunteered,” Khan said. Her hometown is Hartland, where the National MS Society-Wisconsin Chapter is located. “She is concerned about my MS,” Khan’s mother Tehmina said. “I appreciate all of her efforts.” Coming in weekly while in high school, Khan helped with projects such as data entry, writing thank you cards, preparing T-shirts and participant bags for Chapter events, and helping with registration at Bike MS: Best Dam Bike Ride. “I like going to the office and seeing familiar faces,” she said. Faatima Khan recently volunteered at On the Move Madison, a fundraiser that included local food samplings, a silent auction and a research update. MS Connection | 6 campus. An assignment from one of her biology classes required her to work in a laboratory and write a paper on the experience. She searched the college website for MS researchers and found Michael Carrithers, M.D., Ph.D. “His lab is trying to find more substantial treatments for MS,” Khan explained. Khan volunteered at the Wisconsin Chapter office where she assembled gifts for MS Snowmobile Tour participants. In 2011, Khan received an MS Scholarship for $1,000 to help her pursue a college education (for more information on this year’s scholarship program, go to Page 8). “I’m so thankful for the scholarship,” she said. “Medications cost so much, so it was helpful to my family.” “I feel like I’m doing something.” - Faatima Khan She is currently double majoring in biology and Spanish at the University of Wisconsin-Madison with the goal of going to medical school. Khan keeps busy with a variety of volunteer commitments. She tutors bilingual students at Madison West High School and is on the Board for the Muslim Student Association. She also helps out when she can for the Society by coming into the Wisconsin Chapter during school breaks and volunteering at Madisonarea programs. MS Research In addition to volunteering, Khan works in a research laboratory on the UW-Madison Dr. Carrithers recently published a paper in the Journal of Neoropathology and Experimental Neurology involving his research with results showing a potential pathway to a new type of treatment for people with MS. According to Dr. Carrithers, undergraduates like Khan make a significant impact on research. “Faatima has been a great addition to my lab,” Dr. Carrithers said. “The undergraduates at UW who seek research opportunities over multiple semesters make significant contributions to the advancement of research. It is also the best mechanism for students to become interested in pursuing a research Khan works in an MS research career in the lab at UW-Madison. future.” Khan continues to work for Dr. Carrithers this semester. “I feel like I’m doing something,” she said. “Knowing that he’s taking the time to research MS, it’s something that I find exciting. And we’re making progress.” MS Connection | 7 How We Move It Wisconsin Chapter News and Notes MS Scholarship Applications MS shouldn’t stand in the way of a college education, and the MS Scholarship Program can help make sure it doesn’t. Applications for the 2014-15 school year are being accepted through January 15, 2014, for first-time Michael Meade, with his mother at a Chapter event, is a 2012 MS Scholar. college students who are high school seniors or graduates/GED recipients, and who have a parent who has MS or have MS themselves. Scholars are selected based on financial need, academic record, leadership and participation in school or community activities, work experiences and the impact of MS on his or her life. In 2013, $43,000 was awarded to 21 Wisconsin students. Applications and details are available through the Wisconsin Chapter website, wisMS.org. New Self-Help Groups in Marathon and Walworth Counties Two new Self-Help Groups have been started in Wisconsin. The Marathon County MS Circle of Friends group meets the first Thursday of each month from 1-3 p.m. at the Mount View Care Center in Wausau, and the Walworth County MS Self-Help Group is meeting once a month at Mercy MS Connection | 8 Walworth Hospital and Medical Center in Lake Geneva from 6:30-7:30 p.m. on December 11 and January 8. For more information on these groups and others around the state, visit wisMS.org and click on “Programs & Services.” Annual Meeting The Wisconsin Chapter’s Annual Meeting was held on Thursday, December 5, at the Delafield Hotel for the purpose of electing the Board of Trustees, reviewing the treasurer’s report and considering other appropriate business and reports that were presented. Take the Polar Plunge on New Year’s Day The Polar Bear Dash 5k Run/ Walk has selected the National MS Society-Wisconsin Chapter as its charity partner for its event on January 1 at Grant Park in South Milwaukee. Visit polarbeardash.com for details and to sign up. Affordable Care Act For information and resources about the Affordable Care Act, including important facts for people with MS and their families, visit nationalmssociety.org/ACAKickIn. Register for Walk MS by December 31 to receive the 2014 commemorative bandana. See Page 11 for the 2014 dates and locations. Go to walkMSwisconsin.org to register. Touching Hearts at Home In-Service In September employees from Touching Hearts at Home took part in in-service training through the National MS Society for caregiving professionals with clients who have MS. “Touching Hearts at Home is currently working with a few MS clients and that number is growing, so they wanted to provide an opportunity for their staff to learn more about MS, its symptoms and its treatments,” explained Justine Murray, mission delivery coordinator for the Wisconsin Chapter, who helped lead the session. “Many of the staff members also have family members or friends who are living with MS or have been recently diagnosed, making it a wonderful learning experience for these individuals both personally and professionally.” Volunteer Hall of Fame Inductee Bonnie Dittel, Ph.D., was inducted into the National MS Society’s Volunteer Hall of Fame during the Society’s annual Leadership Conference, Nov. 7-9 in Denver. Dr. Dittel was honored for her contributions to scientific research. The senior investigator at the BloodCenter of Wisconsin-Blood Research Institute and an assistant adjunct professor at the Medical College of Wisconsin studies immune system regulation as it relates to MS. She received a $450,000 grant from the Society last year to investigate a molecule that suppresses an MS-like disease in an animal model, and was a member of the Society’s Research Peer Review Committee from 2007-2012. Touching Hearts at Home employees took part in in-service training to help them in serving their clients who have MS. The training is available for professionals who provide home services or work at adult day programs, assisted living facilities or quality nursing homes, to help them feel more comfortable serving those with MS. To schedule an in-service visit, contact Kristen Ruhl at 262-369-4415 or email@example.com. Researcher Bonnie Dittel, Ph.D., was inducted into the Society’s Volunteer Hall of Fame in November. She was joined on stage by (left to right) Eli Rubenstein, chairman of the Society’s Board of Directors; Dittel; fellow inductee Bruce Trapp, Ph.D.; and Cyndi Zagieboylo, president and CEO of the National MS Society. MS Connection | 9 A Winning Approach Top Walk MS team captain explains why she participates I f singer/songwriter Pink had a Midwestern counterpart, it would be Autumn Neugent. The lifelong Madisonian is bold and feisty with a major competitive streak, which she credits as the reason for being one of the Top 100 fundraisers for Walk MS in 2013. the progressive form of the disease. “I’m kind of thankful that I know what I’m going to wake up to tomorrow. My other friends with MS, they’ll be fine, they’ll look fine, they’ll be walking around and then you won’t see them for a couple days because they went blind in one eye, or they couldn’t walk,” she explained. “They have it harder I think because people only see them when they’re okay and they think there’s nothing wrong.” A ‘Hat-tacular’ Attitude Neugent got involved with Walk MS: Madison in 2010 on a whim. That year she was able to walk and push a stroller for her friend. The following three years, she participated using a wheelchair with 50-75 members of her Hot MS (pronounced “hot mess”) team wearing water-wings, sombreros or a combination of the two. Walk MS “Big Cheese” and Hot MS team captain Autumn Neugent likes the competition that comes from fundraising. “The fundraising is a competition to me,” said the 33-year-old, a life-long athlete, who played varsity sports – including hockey – throughout high school and today is up for just about anything active, including kayaking and crosscountry skiing at the American Birkebeiner during the past year. Neugent was diagnosed with progressive MS in 2009 after 15 years of extensive tests, misdiagnoses (“They said it was stress or tight pants”) and hiding the numbness in her hands and feet from others. While she freely admits to having days now when she is angry about living with MS, she chooses to see an upside to MS Connection | 10 “I like to be random,” Neugent said of the novel accessories. She has stayed involved because she believes raising awareness of what MS is, and how different it is from person to person, is important. “People either don’t know what “… everyone there is always so friendly … It’s one big community of support.” - Autumn Neugent MS is at all or, because it affects someone so differently, if they know someone with MS, that’s their vision of MS. Whether it be someone who appears fine and walks all over the place or if it is someone confined to a wheelchair, that’s their vision of MS. There’s such a broad spectrum. Events such as Walk MS promote the awareness of how Neugent is a life-long athlete and proud mom different it is.” to 14-year-old Jada. She also revels in the atmosphere of the event. “You might not even know them but everyone there is always so friendly and willing to say something positive to anybody. For the most part you don’t know who’s there that has the disease and who’s there supporting someone else, and that’s kind of nice. It’s one big community of support. It’s motivating. It’s a great feeling.” Autumn Neugent again joined the Big Cheese Club of top 100 Walk MS fundraisers after raising $2,265 in 2013; her Hot MS team raised more than $8,000. Those dollars came in-part from “MS Gets on Our2011 Nerves,” Top 100 a Walk MS Fundraisers benefit basketball game between Daze Entertainment Basketball and Madisonarea celebrities, as well as a percentage of food sales at local restaurant Benvenuto’s. The rest came from asking people to donate using her personalized online participant center page (available through the Walk MS website to anyone who registers) and Facebook. “People are more than willing to donate a dollar or five. I had someone anonymously donate $500,” she said. She plans to hold another benefit basketball game before the upcoming Walk MS: Madison in May. Be inspired. Get Connected. Walk MS. Connect with others whose lives have been touched by multiple sclerosis at Walk MS, a day to come together, to celebrate the progress made and to show the power of connections. Register at walkMSwisconsin.org or call 262-369-4400 / 800-242-3358 (toll-free in Wisconsin). • Appleton Location TBD – April 27 • Cedarburg Cedarburg High School – May 3 • De Pere West De Pere High School – April 27 • Eau Claire UW-Eau Claire – April 26 • Fond du Lac Marian University – April 27 • Janesville Palmer Park – May 4 • Kenosha-Racine Location TBD – April 27 • La Crosse La Crosse Center – April 26 • Madison Warner Park – May 4 • Marshfield Wildwood Park – April 26 • Menomonee Falls Menomonee Falls High School – May 3 • Milwaukee Summerfest Grounds Briggs & Stratton Big Backyard – May 4 • Oconomowoc St. Paul’s Lutheran School – May 3 • Platteville UW-Platteville – April 27 • Rhinelander Rhinelander High School – May 10 • Sheboygan Blue Harbor Resort – April 27 • Wausau Patriot Center – April 26 Check-in: 9 a.m. l Walk Begins: 10 a.m. NEW ! September 14: Oshkosh Location TBD Stevens Point Location TBD Waukesha Frame Park MS Connection | 11 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. • Author Jeffrey Gingold donated $402.66 in royalties from his books Mental Sharpening Stones and Facing the Cognitive Challenges of Multiple Sclerosis (2nd Edition) to the Wisconsin Chapter for education and research. Jeffrey Gingold He has also donates proceeds been featured from his book in several sales to the recent articles, Society. including in Everyday Health, spreading awareness of the cognitive challenges people with MS sometimes face. • The On the Move Madison fundraiser on September 26 raised more than $28,000 for research. The inaugural event was developed by Wisconsin Chapter volunteers under the leadership of On the Move Madison co-chairs Molly Walsh and Libby Gerds of (left to right) On the Move Madison co-chair Molly Walsh, Sonya Fredrick and Megan Phelps were among those who attended the September 26th event. MS Connection | 12 Madison, and included wine, food samplings, live music and a silent auction. The emcee was Madison’s NBC 15 news anchor and reporter John Stofflet. Aaron Field, M.D., Ph.D., provided a brief update on MS research. Another On the Move Madison event is planned for September 2014. • Ashley Kumlien visited the Wisconsin Chapter office in October to celebrate the successful completion of the 3,000-mile relay across the country by MS Run the US, which she founded. The relay consisted of 14 participants who committed to raising a minimum of $10,000 each; the event has brought in $180,000 so far, $120,000 of which was donated to the Wisconsin Chapter for research. “It’s a total team effort,” Kumlien said during her visit. Ashley Kumlien’s organization, “I wish I could MS Run the US, raised $180,000 for MS this year. bring all these runners with me, because they’re so amazing. I can’t wait for the day we’re hitting the million-dollar mark.” Planning is already underway for a relay in 2014. For more on MS Run the US, visit msruntheus.com. Is Social Security Disability Going Broke? By Tom Bush Y ou may have gotten the impression from the media that Social Security is operating at a deficit, that it is paying out more in disability, retirement and survivors benefits than it is receiving in taxes. Although that day is coming in the next decade or so, it hasn’t arrived yet. What is happening now is that Social Security is paying out more in disability benefits than it is receiving in taxes specially earmarked for disability. You and your employer pay for your eligibility for Social Security disability (and retirement/ survivors benefits and Medicare hospital insurance, too) through Federal Insurance Contributions Act (FICA) taxes. FICA taxes total 7.65 percent of your income and your employer matches that amount. Of each 7.65 percent, 1.45 percent pays for Medicare hospital insurance. The remaining 6.2 percent is the amount you and your employer each pay as Social Security taxes. Of this amount, 5.3 percent goes for retirement and survivors benefits; 0.9 percent pays for Social Security disability. Does 0.9 percent for disability sound Social Security taxes are paid into two trust funds, one for disability and one for retirement and survivors’ benefits. The idea is that both trust funds are supposed to accumulate a surplus to be used when times Tom Bush shares what’s are bad. While the sum happening with Social total of deposits into the Security disability two trust funds exceeds benefits funding. the amount paid out for all Social Security benefits, in recent years, the amount paid out in disability benefits has exceeded the earmarked amount coming in from the 0.9 percent portion of the FICA tax. Thus, the disability benefits trust fund is being depleted while the retirement/survivors trust fund is still growing. The disability benefits trust fund is projected to run out in 2016. At that point, even though the disability trust fund will be empty, partial benefits can continue to be paid from current FICA taxes. It is projected that Social Security will be able to pay about 80 percent of disability benefits once the disability trust fund hits “What is happening now is that Social zero. Because the average monthly Social Security is paying out more in disability Security disability benefit payment is benefits than it is receiving in taxes about $1,150, an amount hard to live on, it would be a tragedy if the average were specially earmarked for disability.” reduced to $920, but some in Congress are - Tom Bush thinking that a benefit cut may have to be part of the solution. low to you? It is, and that’s part of the problem. Another solution, albeit a temporary one, is The allocation for disability, which hasn’t been for Congress to adjust the amount going to the changed by Congress since the year 2000, disability benefits trust fund without increasing should have been higher. In fact, if it had been overall FICA taxes. If this is all that is done, only 0.2 percent higher (and the retirement though, both Social Security trust funds will be and survivors portion 0.2 percent lower, i.e., empty by about 2033. Estimates are after 2033 5.1 percent), the disability program and the Social Security will be able to pay only about retirement/survivors program would be in 75 percent of all Social Security benefits from approximately the same condition. FICA taxes. Continued on Page 14 MS Connection | 13 Continued from Page 13 More long range solutions involve tax increases or benefit reductions or both. A 0.2 percent increase for Social Security disability would probably solve the problem for that program. Although a 2 percent to 3 percent FICA tax increase would likely solve the problem for both programs, such a solution is unlikely because everyone is reluctant to raise FICA taxes. Nevertheless, this estimate gives a sense of proportion to the problem – it is not insurmountable. The Social Security disability program needs the attention of Congress. Over the next few years, we can expect to hear discussions, many of them misleading, about Social Security disability going broke and various proposals to fix the problem, some of which are likely to be outlandish. When you hear such things, try to maintain perspective on the problem. 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. International Progressive MS Alliance First clinical trial for myelin repair announced A lthough multiple sclerosis research has made significant strides in recent years, progressive MS has posed special challenges to researchers in understanding the ways it differs from relapsing MS and in designing clinical trials to address those variances. To work toward better strategies to address the specific aspects of progressive MS, more than 170 leading international researchers met at the beginning of 2013 to discuss key research priorities to accelerate treatments. The International Progressive MS Alliance includes the National Multiple Sclerosis Society, Multiple Sclerosis International Federation, Italian Multiple Sclerosis Society and the MS Society in the UK. The International Progressive MS Alliance identified five areas of focus: Identify targets and repurpose therapies to treat progressive MS. Develop experimental models that follow the clinical symptoms and tissue damage in progressive MS. Develop strategies for phase II clinical trials. Determine clinical outcome measures and trial design for clinical trials. Research symptom management and rehabilitation. Jonah Chan, Ph.D., will be leading a clinical trial for remyelination. “Overcoming the challenges of progressive MS is a key objective of the Society’s Strategic Response to MS,” said Timothy Coetzee, Ph.D., chief advocacy, services and research officer of the Society. “This is just one of the ways we’re collaborating worldwide to speed clinical trials in progressive MS.” Already progress is moving forward: the FDA recently approved a clinical trial that will test compounds identified for their potential to promote remyelination. The trial will be led by Jonah Chan, Ph.D. at the University of California, San Francisco. At the Society’s National Leadership Conference in early November, he said, “We have some compounds that are extremely promising.” MS Connection | 14 Inspiring Hope for a World Free of MS Challenge Walk MS 2013 raises more than $400,000 to power the MS Movement C hallenge Walk MS 2013 doubled the population of Egg Harbor, Wisconsin, during the weekend of September 20-22 when more than 200 walkers, crew and super crew members converged for the sixth annual event. the highlights: u Collectively participants walked more than 5,200 miles – the equivalent of walking from Washington, D.C. to Los Angeles and back. u It was one of nine Challenge Walk MS events in the country. u 24 of those who participated have been diagnosed with MS. u 27 of those who participated have been part of Challenge Walk MS every year since it began. u 48 individuals were inducted into the 2013 Celebration Club for raising $2,500 or more, including 15 first-time Challenge Walk MS participants. u The weekend’s silent auction, featuring high-quality items and original artwork donated by Challenge Walk MS participants, generated $7,000. u In total, more than $400,000 was raised for MS-related research, programs and services. Registration is open for next year. Be part of the all-inclusive experience participants call “life changing.” Go to challengewalkMSwi.org or call 262-369-4400 (phone toll free from within Wisconsin 800-242-3358) to register. Thank You, Challenge Walk MS 2013 Sponsors MS Connection | 15 Teleconferences Bring Learning Home T he Midwest Teleconference Series brings learning home with monthly teleconferences on different aspects of living with multiple sclerosis. Held the second Monday of each month at 7 p.m. Central, the hour-long calls feature a professional expert on each topic. Register online at wisMS.org or by calling 800-344-4867. January 13 MS and Men’s Sexual Health • Understand possible intimacy issues with MS • Learn when and how to talk to your health professional and loved one about these challenges • Explore treatments and therapy options February 10 Just the Basics – for Those Newly Diagnosed with MS • Learn what multiple sclerosis is and how it is diagnosed • Explore the accompanying stress and emotions that go with an MS diagnosis • Learn about National MS Society resources available for you and those in your life March 10 How MS Affects Vision • Understanding the scope of vision issues in MS • Learn about helpful vision care specialists and possible treatment options • Explore ways to coordinate your care between healthcare professionals April 14 Sharing Your Diagnosis with Friends and Family • Gain tips for talking with friends and family about your MS diagnosis • Learn to respond to people who don’t understand your disease • Be empowered to create your own support network Missed a call? All calls are recorded and made available on wisMS.org within a week of the teleconference date. PAID ADVERTISEMENT An Oral Treatment Option An Oral Treatment Option for Relapsing Forms of for Relapsing Forms of Multiple Sclerosis (MS) 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 The Center for Neurological Disorders, Milwaukee Cheryl Blaschuk, NP Columbia-St. Mary’s MS Clinic, Milwaukee, WI Monday, December 9, 2013 at 6:00 PM Central Wednesday, December 18, 2013 at 6:00 PM Central El Fuego 909 West Layton Avenue Milwaukee, WI 53221 HobNob 277 South Sheridan Road Racine, WI 53403 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: TR226597 (1070084) MS.US.PO1497.0313 Event code: TR230669 (1091543) MS Connection | 16 PAID ADVERTISEMENT MS.US.PO1497.0313 Increase Your 401(k) Confidence By Pam Evason F or many Americans in the midst of their professional careers, 401(k) plans (and other employer-sponsored defined contribution plans such as 403(b) plans) represent a significant part of their retirement savings. According to the Investment Company Institute, as of Quarter One of 2013, $5.4 trillion (or 26%) of U.S. retirement assets were held in these account types. With 401(k) plans, the responsibility for investing and saving is placed on the individual. Under these plans, accounts are established in the individual employeeâ€™s name who is then responsible for managing the accounts over time (including setting their contribution amounts, selecting investments, determining withdrawal timing and amounts, and monitoring expenses). The balance available at retirement is dependent upon the contributions made over time, as well as the performance of the plan and the employeeâ€™s ability to properly manage that responsibility. This dynamic requires employees have a high level of knowledge, discipline and confidence when it comes to their retirement accounts. However, industry surveys continue to indicate that many individuals are not confident in their ability to manage their 401(k)s. A recent survey conducted by Schwab Retirement Plan Services found that 57% of respondents wish there was an easier way to select their 401(k) investments and 46% donâ€™t feel they know the best investment options for their individual situation. If you see yourself among these statistics and are looking to increase your knowledge and confidence surrounding your 401(k) plan (or other defined contribution accounts), below are some steps you can take. 1 Aggregate 2 Consolidate 3 Contribute Due to the significance of 401(k) and other defined contribution Pam Evason gives advice on how to increase plans to overall retirement savings retirement assets, they need to be considered in through 401(k) plans. your overall investment approach. It is a best practice to balance your 401(k) account(s) with your other investment accounts (including but not limited to cash accounts, brokerage accounts, savings bonds and other retirement plans) and set your asset allocation and investment approach based upon on this aggregated look. As you progress throughout your career, you may establish 401(k) accounts at several different companies. This can lead to numerous difficulties, including problems monitoring your overall investment picture; increased potential to lose track of various assets and limited investment options (as you are restricted to the investment options offered by the various plans). Consider rolling over your prior 401(k) plans into a single Individual Retirement Account (IRA). This is a relatively simple process that will save you significant time and energy in the future. 401(k) plans offer significant tax advantages. Not only are contributions to the plan tax deductible, you do not pay current income tax on the income and gains earned on the Continued on Page 18 MS Connection | 17 Continued from Page 17 underlying investments. All taxation is deferred until distributions are taken. Further, many companies offer an employer match, which serves to further increase your annual savings. Determine your individual maximum contribution limit, explore your employer matching program and seek to contribute as much as possible within those limits to your current plan. 4 Avoid withdrawals 401(k) plans were established to encourage individuals to save for retirement. As a result, there are penalties in place to discourage early withdrawals (a 10% excise tax, in addition to current taxation on the withdrawal). Under certain emergency situations, withdrawals can be made without penalty. However, short of these situations, avoidance of withdrawals is advised in order to maximize your savings and give your account the time it needs to grow. 5 Seek advice There is no better way to gain the confidence and skills necessary to manage your retirement savings than to work with an investment professional. Many companies offer their employees some level of advice (typically via Human Resources or the plan administrator). Independent investment advisors can provide further professional advice, assisting individuals in consolidating previous employer plans, determining appropriate risk profiles, setting overall asset allocation and making investment elections within all accounts, including 401(k) plans. Employer-sponsored defined contribution plans, such as 401(k) accounts, serve as an essential retirement vehicle for many Americans. The responsibility for their management and long-term performance rests on our individual shoulders. The steps outlined above will help increase your confidence and get your 401(k) plan on solid footing for years to come. 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. A Fun Ride A Great Cause January 23-25, 2014 Join a fun, all-inclusive and fully-supported snowmobiling weekend in beautiful Northern Wisconsin where your ride will make a difference in the lives of people living with multiple sclerosis. ❋ Ride up to 250 miles ❋ Lodging and meals included ❋ Mechanical support Register today! MSsnowmobiletour.org | 800-242-3358 First-time MS Snowmobile Tour riders can register for FREE with the Ticket to Ride. New Location — Lac du Flambeau, WI MS Connection | 18 Sponsored by: Taking the Journey with MS Patients Dr. Mary Goodsett treats patients in western Wisconsin W hen Mary Goodsett, M.D., started taking care of MS patients in 1989, there were no FDA-approved disease modifying therapies available to treat them. “Even then there were so many different ways you could make a positive impact on MS patients’ lives with a focus on symptom management,” she said. “The availability of the disease modifying agents has made working with my patients even more rewarding.” “We are able to address not only the patients’ needs, but also family and caregiver needs.” - Dr. Mary Goodsett Dr. Goodsett is a neurologist at Gundersen Health System in La Crosse and recently became a member of the National Multiple Sclerosis Society-Wisconsin Chapter’s Clinical Advisory Committee (CAC), which advises the Chapter on clinical, research and medical matters. “I have always been fascinated by the brain and the many mysteries it holds,” she explained. “Many neurology patients have chronic illnesses which involve care over many years, allowing me the opportunity to get to know them and their families well. MS is a many-faceted disease requiring an organized and comprehensive approach.” Dr. Mary Goodsett is a neurologist at Gundersen Health System. The Gundersen MS Clinic offers this approach, according to Dr. Goodsett. This team approach helps address the many different ways MS can impact peoples’ lives. “We have many people across many specialties who share my passion for treating MS patients. We are able to address not only the patients’ needs, but also family and caregiver needs.” Those specialties include physical medicine and rehabilitation, urology, ophthalmology, social work and behavioral health. The clinic also includes MS certified physical therapists, occupational therapists and a nurse who recently completed her practitioner degree. For these reasons, the MS Clinic was approved as a Partner in MS Care by the CAC in 2012, which means it has been recognized as an affiliate of the Wisconsin Chapter for the level of its MS care. Dr. Goodsett, who has practiced with Gundersen Health System since 1999, sees around 250 patients with MS each year. Gundersen Health System in La Crosse includes a Multiple Sclerosis Clinic. “I look forward to continuing on this journey with my patients as we find new treatments involving myelin repair and eventual cure and prevention of the disease.” MS Connection | 19 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 wisMS.org Toll Free 800-242-3358 262-369-4400 ® Give here NO CO SSN ..... ...... ...... 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