Make a Mark for MS This Tax Season Walk MS Dates Announced Philanthropic Youth of Today: Becky Hall
r a d
n e l a e C 3 sid 1 20 In
Wisconsin Chapter Board of Trustees Kenneth Minor, Chair Sonic Foundry, Inc.
Anne Brouwer McMillian Doolittle, LLP
Martin McLaughlin Reinhart Boerner Van Deuren, S.C.
David Rodgers, Vice Chair Briggs & Stratton Corporation
Robert Buhler Open Pantry Food Marts of Wisconsin, Inc.
Bruce Olson The Marcus Corporation Shelley Peterman Schwarz Meeting Life’s Challenges, LLC
Michael Lutze, Vice Chair Ernst & Young Tom Golden, Vice Chair M3 Insurance Solutions for Business James Rose, Treasurer Baker Tilly Virchow Krause, LLP Robert Sowinski, Secretary Diversified Insurance Services, Inc. Alyson Zierdt, Past Chair Attorney, Retired Colleen Kalt, President & CEO National MS SocietyWisconsin Chapter
Dennis Christiansen Community Advocate Robert Engel Retired, M&I Bank
David Raysich Plunkett Raysich Architects Patricia Raysich Community Advocate
Pamela Evason Windermere Wealth Advisors LLC
Jeffrey Steren Steren Management/McDonald’s
Paul Jones Harley-Davidson, Inc.
Robyn Turtenwald Community Advocate
Wayne Larsen ATI Ladish LLC
Wisconsin Chapter: Where
Molly Walsh Waisman Center
Does the Money Go?
83.6 10.7 5.7 %
Mission
%
Fundraising
%
Management & General
Source: 2012 Audited Financial Statement If you or someone you know has MS: Studies show that early and ongoing treatment with an FDA-approved therapy can reduce future disease activity and improve quality of life for many people with multiple sclerosis. Talk to your health care professional or contact the National MS Society at nationalmssociety.org or 1-800-344-4867 to learn about ways to help manage multiple sclerosis and about current research that may one day reveal a cure. The National MS Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The National MS Society assumes no liability for the use of contents of any product or service mentioned. Information provided by the Society is based upon professional advice, published, experience and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. The National MS Society recommends that all questions and information be discussed with a personal physician. The National MS Society is committed to seeing a world free of MS. ©2013 National Multiple Sclerosis Society-Wisconsin Chapter MS Connection is a quarterly publication of the National Multiple Sclerosis Society-Wisconsin Chapter. Editor: Maureen Waslicki | Assistant Editor: Amanda Gasper Krueger | Art Director: Amy Malo To comment or share a story idea, call 262-369-4421.
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NOW is the Time to Move the Mission Forward Dear Friends, Thousands of people in Wisconsin showed their support for the MS Movement in one way or another this year. By donating money or time, individuals of all ages and backgrounds made a difference in the lives of those affected by this disease. You’ll find the photos and stories of some of those individuals featured inside this issue of MS Connection along with a special year-end gift to you – a calendar for the New Year reflective of the people in the MS community and the incredible qualities they bring to the Movement. Use it not only to keep track of your own schedules and special dates, but also to keep tabs on ways to connect with the Movement at events, fundraisers and programs throughout 2013. We continue to make strides in the Society’s No Opportunity Wasted initiative and its commitment to raise $250 million to fuel more research. Truly NOW is the time that you can have a significant impact on the future of this disease. A year-end gift to the Chapter will keep that momentum building until we STOP disease progression, RESTORE what has been lost and END MS forever. With your help, we’ll get there. Best wishes to you and yours for the New Year,
Colleen G. Kalt President & CEO
Victory in Medicare Settlement Means More Services for Individuals with MS In October, a settlement to end Medicare’s “Improvement Standard” was reached in a nationwide lawsuit in which the National Multiple Sclerosis Society was a plaintiff.
nursing facilities, home health and outpatient physical or occupational therapy to Medicare beneficiaries living with MS or other diseases if they did not show improvement.
The standard denied coverage for services such as skilled
The agreement to end the standard will vastly benefit
people with MS and their families, helping place essential services back in their reach. For more information and to follow the settlement’s progress, visit www.MSActivist.org, or sign up for MS eNEWS at www. nationalMSsociety.org/signup. MS Connection | 3
Trap Shooting Fundraiser Attracts 70 Participants
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hey wanted to do it for me,” said Bruce Frei of the Sportsmen Against Multiple Sclerosis trap shooting fundraiser held at the Brill Area Sportsmen’s Club in August. Approximately 70 shooters and more than 200 attendees came out for the event, which included a silent auction, raffle, dog show, turkey call making and food sales in addition to trap shooting. It was the fourth year the club has held a benefit shoot and the first to support the National MS Society. An avid duck and deer hunter who was diagnosed with MS six years ago, Frei admits it has been a lot harder to walk and therefore to hunt and trap shoot. “But I still am able to hunt due to the fact that my friends make sure that I can get to the hunting area safely,” he said. “They know that trap shooting is very special to me.”
Brill Area Sportsmen’s Club President Rocky Bank (left) and Bruce Frei presented a check to Wisconsin Chapter Mission Delivery Manager Kristen Ruhl for $6,702 raised through the Sportsmen Against Multiple Sclerosis trap shooting event.
For more details on the event, visit wisMS.org and click on Do It Yourself Fundraising. You’ll find Frei’s event and others listed under Success Stories.
Foundations and Corporations Provide Grants to 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. • • • • • • • •
$7,000 from A.O. Smith Foundation, for research $3,000 from Holz Family Foundation, for the scholarship program $3,000 from Jack DeLoss Taylor Trust, for the scholarship program $1,500 from The Hinrichs Foundation $500 from the John and Ann Gillen Family Fund within the Community Foundation For the Fox Valley Region $500 from Sub-Zero Foundation $100 from the Walter & Lois Keller Family Fund within the Community Foundation For the Fox Valley Region $100 from the Bobbi Peckarsky and Steve Horn Charitable Giving Fund within the Fidelity Charitable gift fund
In total, $15,700 was received in gifts and grants from July to September 2012. If you are connected to a foundation that you would like to suggest for a grant opportunity, or for more information on how you can help, call Cindy Yomantas at 262-369-4431 or cindy.yomantas@nmss.org. MS Connection | 4
One Man’s Journey to Push Beyond
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fter taking on two swim challenges this past year, Brian Stewart is ready for more. “I never had an interest in swimming before I got a Y membership in February,” he said. “Just out of curiosity, I jumped in the pool for the first time in about 10 years.” He went swimming every day, building up endurance. “I started with 10 laps,” he said. “A few months later, 75 laps. I took it as a nice slow swim.”
This past June, Stewart participated in his first competitive swim event, the Minocqua Island Swim Challenge, a onemile swim on Lake Minocqua.
the Limits
the problem was. Two gals that were kayak guides held on to my elbows and helped me walk out. The crowd started cheering again and even though muscle fatigue prevented me from
Describing the event, he said: “I “I want newly diagnosed people was the last swimthat might be scared to know that mer to finish and you can do these things. Pushing I could hear the crowd clapping and beyond the limits is possible. ” cheering. That was - Brian Stewart very motivating. But when I stood up walking, the crowd’s encourto walk out of the water, I fell. agement made me feel like a The crowd stopped cheering, because they had no idea what million dollars.” Continued on Page 6
Brian Stewart (left), a Rhinelander resident diagnosed with MS, completed two Swim Challenges this past summer: the Minocqua Island Swim Challenge and the Point to LaPointe Swim. Stewart is pictured with his Point to LaPointe Swim kayak guide Dee Johnson and high school friend Kurt LaRock.
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After participating in the Minocqua Island Swim Challenge, Stewart said he was excited to sign up for the Point to LaPointe Swim, held August 4. Point to LaPointe is a 2.1-mile open water swim on Lake Superior. Stewart participated in the non-competitive community division. “It was the most exciting thing I’ve ever seen,” he said. “It was powerful when everybody got into the water, especially being in Lake Superior with MS.” Diagnosed with MS in 2004, Stewart said his first exacerbation was in 1991 when he experienced numbness from the knee down in one leg. “You reach a point where you can’t do as much,” he said.
Brian Stewart was presented with the Olivia Clark Award at the Minocqua Island Swim Challenge for demonstrating determination and persistence.
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“But it’s become obvious to me that I can bike and swim. I’m going to take that as far as I can.” Stewart draws inspiration from Lori Schneider, a Bayfield woman with MS who was the first person Brian Stewart completed the 2.1 mile Point to with MS to LaPointe Swim in 1 hour, 55 minutes and 3 seconds, climb Mt. Ever- beating the 2 ½ hours allotted for community est and conquer swimmers. After the swim, Stewart cheered on the remaining swimmers. each of the Seven Summits. “Her climb was truly an things,” he said. “Pushing inspiration. In the middle of beyond the limits is possible.” the swim, I was thinking about what Lori says about pushing He plans to participate in both the envelope.” swims again next year and is Others are finding “The crowd’s encouragement made Stewart to be the inspiring one. After me feel like a million dollars.” the Minocqua Island - Brian Stewart Swim Challenge, he was presented with the Olivia Clark Award, given hoping to add the Madison to a swimmer who exhibits Open Water Swim to his determination, persistence and competitive résumé. a love for the Northwoods area of Wisconsin. He was also Stewart, who moved to featured in The Northwooods Rhinelander from Muskego River News before the Point two years ago, is also involved to LaPointe Swim. in the Rhinelander area MS support group and Walk MS. “I want newly diagnosed He said, “Getting close to people that might be scared everyone who lives with MS to know that you can do these is an awful lot of fun.”
Save this page with your tax records
Feel Good About Tax Season This Year
Donate through Wisconsin’s Make a Mark program
Y
ou can help improve the quality of life and ensure continued independence for Wisconsinites affected by multiple sclerosis by designating a donation for multiple sclerosis on your Wisconsin income tax form. Equally important, ask your family members, friends, neighbors and co-workers to do the same, and ask your tax preparer to promote this vital program. More Critical Now than Ever The Make a Mark for MS program takes on even greater importance now as recent legislative changes will limit the number of participating nonprofit organizations to 10 – and going forward only the top eight performers will be retained from year-to-year. (The two lowest will be moved to the bottom of a waiting list and two new nonprofits will be added.) The program is critically important for those in Wisconsin affected by multiple sclerosis. More than $500,000 has been generated over the course of the program’s history, representing more than 50 percent of the Chapter’s entire budget for financial assistance. Without those funds, the Chapter’s ability to respond to the financial assistance needs of those in Wisconsin affected by MS will be severely impacted. Last year $77,436.65 was generated – every single cent of which was spent in Wisconsin to provide financial assistance for those with MS. Those dollars paid for therapy, counseling, respite care, durable medical equipment and home and automobile modifications that improved the quality of life and ensured continued independence for Wisconsin residents.
What Your Donation Provides
• Aquatic therapy to maintain strength • Accessible vehicle modifications to support greater freedom • Orthotic equipment to improve walking ability • Widening doorways in homes to make them wheelchair accessible • Adaptive computer software to allow clients to work at home • Installation of bathroom grab bars, wheelchair ramps, wheelchair lifts and other home modifications to provide client independence • In-home arm- and leg-strengthening therapy to maintain mobility • Air conditioner units to reduce the impact of the summer heat In addition to a thoughtful and thorough review of each application, every effort is made to identify and secure donated and/or discounted services and products to ensure that each dollar donated through the tax check-off program goes as far as possible to serve as many as possible. Last year this resulted in a contribution of more than $60,000 in donated or discounted services and products in addition to the $77,436.65 in total dollars donated by Wisconsin tax payers.
Turn the page to see the difference your donation can make. MS Connection | 7
Letters of Thanks for Your Financial Assistance
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ealth care costs, lost wages and the lifestyle modifications that are often required make multiple sclerosis an expensive disease. Your gifts in 2012 improved the lives and maintained the independence of many of your fellow Wisconsinites. Here are a few of the letters received this year in gratitude for the assistance you helped provide. I would like to take a moment to say thank you very much for the assistance to purchase a new a/c unit for our home. My husband and I appreciate all of the help that we got from the National Multiple Sclerosis Society. I will spend my summer in comfort instead of suffering from the heat and humidity. I will also be telling other people that I know that have MS about this program, on how it helped me out when I needed assistance to purchase something to help me with my MS. I would be proud if you shared my letter with others to let them know how the program helped me when I was in need of assistance ....
Because of your generous donation toward my Walkaide, my life has forever been impacted in so many positive ways. To begin with, a simple walk to the mail box with my grandson is now possible; something I could never do in the past. It has also given me the flexibility of maneuvering around with my two-year-old granddaughter who keeps me on my toes. For the first time in a long time my husband and I are planning to start traveling together again. In addition to all the wonderful things it has done in my life, it has also advanced my development in my Adaptive Physical Education classes at the University of Wisconsin. On behalf of myself and my family, we want to thank you from the bottom of our hearts for your generosity. ciety you to the MS So k an th re ce n b si o to tain my I wish to expressassistance given to me in order for the financial tions needed for my vehicle. driving modifica e and vement in my lifthis ro p im t n ca ifi sign ce This will make alain the feelings of independen p ex it is hard to ve. assistance will gi of the MS consin Chapter is W e th f o le p peo The donors andbe thanked enough. t o n n Society ca
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The above photo shows the ramp that dollars from the MS Society provided me. It is always heart warming to be at the receiving end of such a gift. It allows my husband (my primary care giver) and I the ability to do much more safer and easier. In addition, I know that our family and friends who have raised more than $10,000 for MS will be thrilled that their dollars not only help provide research funds and help anyone with MS but most notably, help someone they know and love receive a ramp.
MS Scholarships Help Families Invest in the Future Applications being accepted through January 15
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he MS Scholarship Program was started to ensure that the financial impact of multiple sclerosis doesn’t stand in the way of a college education for those affected by the disease. Applications are being accepted through January 15, 2013. To qualify, applicants must: • Be a high school senior or high school (or GED) graduate. • Have a parent who has MS or have MS themselves. • Be attending an accredited post-secondary school for the first time. Scholars are selected on the basis of financial need, academic record, leadership and participation in school or community activities, work experiences and an essay on the impact of MS on the applicant’s life.
Amanda Dehmlow, a 2012 scholar, with her parents Robert and Lynn.
Applications are processed through Scholarship America, a national nonprofit organization, and then sent to the Wisconsin Chapter for further review by the Wisconsin Chapter MS Scholarship Committee. The committee is comprised of volunteers.
In 2012, 27 Wisconsin students received $45,000 in scholarship funds from the program, with most awards ranging from $1,000 to $3,000. Since the program started in 2004, more than $350,000 in scholarships has been awarded to Wisconsin students. Applications are available through the Wisconsin Chapter website, wisMS.org. To learn more, contact Meghan Schnabl at 262-369-4420 or meghan.schnabl@nmss.org. James Walker, another 2012 scholar, with his parents Jim and Gena and his sister Leah.
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UW-Madison Senior Honored as Philanthropic Youth of Today Becky Hall receives award for her volunteer efforts on behalf of those with multiple sclerosis
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n going for $10,000, Becky Hall has raised more than $50,000. The 22-year-old UW-Madison senior was honored by the Association of Fundraising Professionals, Southeastern Wisconsin Chapter, at its National Philanthropy Day Awards Event on November 13. A Hartland resident whose mom was diagnosed with multiple sclerosis in 2000, Becky received the Philanthropic Youth of Today Award for her demonstrated philanthropic leadership at such a young age. Following her mom’s diagnosis, Becky began volunteering at the Wisconsin Chapter’s Bike MS: Best Dam Bike Ride. She was in fourth grade at the time. She became a pedal pusher at age 12, riding in the event instead of volunteering and eventually becoming part of Charlie’s MS Angels, a Best Dam Bike Ride team honoring Charlie Siewert, a Delafield-area man who was diagnosed with MS two years before Becky’s mom but whose experience with the disease was very different. By the time Becky was a senior in high school, Siewert was legally blind and in a wheelchair. He passed away in 2010. “The first weekend of August, the weekend I spend as a member of
MS Connection |
Charlie’s MS Angels, has become the most important two days of my year,” Becky wrote in a high school paper, describing the ride. “I do what I can and bike because it’s one way I can help towards a cure. While I can’t make breakthrough discoveries in a laboratory, I can pedal over hills, down valleys and past cornfields.” It was during those first years as a rider that Becky started fundraising, at first to generate the $300 minimum pledge, but then accepting a friendly challenge from Siewert’s wife to try to raise $10,000 for the National MS Society. Hall launched Going for Ten Thousand (GF10k) in 2010.
“She has inspired other kids to get involved, and maybe she will be the spark to help someone else shine because of it.” – Peggy Mat-Siewert “I was so tired and emotionally strained when Charlie passed, so it was uplifting for me that with his passing, something came out of it that kept our Movement going,” Peggy Mat-Siewert recalled of Becky rising to the challenge. “I was so happy she grasped at it and brought it even further than imagined. She has inspired other kids to get involved, and maybe she will be the spark to help someone else shine because of it.” Becky herself has certainly shined, raising more than $50,000 through GF10K to date, mainly by coordinating special events that get others involved in the Movement. These include: • a soccer program at her alma mater, Arrowhead High School, that raised $8,000 • a “Hoops for Hope” three-on-three basketball tournament
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• winning the $1,000 Pepsi Refresh 8-Hour Challenge by beating out other projects from across the country in generating the most new attention in one day for a project that benefits the community • creating “Race to Erase MS,” a 5K walk/run held in Hartland and in Madison
It was during Becky’s first years with the Best Dam Bike Ride that she started fundraising.
Because she has surpassed the $10,000 mark, “Going for Ten Thousand” now signifies the more than 10,000 children, women and men in Wisconsin who have been diagnosed with MS and for whom Becky’s efforts help support. She acknowledges that the level she goes to in raising awareness and dollars is outside of the norm for someone her age. “My friends tell me that,” she said. “But I wouldn’t be able to do it without the amazing amount of support from people around me.” Motivated by Fear – And a Lack of It “Becky has always been ‘all in’ whenever she decides to do something,” said her dad, Matt, sharing the story of when Becky was about 12 and raising money for an early Bike MS event the Halls did as a family: “One of the things we did to raise money was sell Krispy Kreme donuts. She went from business to business and landed in a local car dealer. They allowed her to go office to office and when she was done, she sold over 25 dozen donuts in one business. One of the managers there gave her his business card and told her to come back when she was 18; he was amazed at how she had no fear and that no one dared say no to her. He said she
could sell cars for him as soon as she was old enough, and he was serious.” “From the time Becky was able, she’s naturally moved to wherever she sees a need,” her mom, Jane, described. In middle school, service points were awarded to Student Council members; Becky earned more than anyone else. In high school, she and some friends founded Arrowhead High School’s Key Club; it quickly became the largest high school chapter in the state and then the nation. After Becky’s first year in college, she spent every dollar she had in order to go to Tanzania and spend six weeks serving at a local school. “She’s not just passionate about MS, she’s passionate about everything she does. What it tells us is that we raised a good person. A natural leader. She’s grown into a young adult we can all be proud of.” “I’ve never believed that being too young is a good excuse for anything,”
Becky admits that much of the Becky says. Let’s Chalk About MS is one way she raises awareness continued motivation in her about multiple sclerosis by encouraging fellow UW-Madison students to sign their names and draw pictures in chalk on the East Campus Mall MS-related efforts comes from sidewalk if they’ve been touched in some way by, or just want to know the fear that her mom could get more about, the disease. worse and her MS could take a different path. “We’ve been unnever believed that being too young is a good believably lucky; overall she’s doing amazingly excuse for anything. well. But I do it all in the hope that she won’t get worse,” Becky said. “You’re never too young to make a difference,” she added. “You’ll find that people are going to One thing she doesn’t fear is failing. support you if you really believe in your cause, whether it’s for MS or something else. Every “One of my biggest strengths and weaknesses little piece will make a difference and it really is my age. I’m young. I haven’t gotten cynical does all add up at the end.” enough yet to think I can fail,” she said. “I’ve
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How We Move It Wisconsin Chapter News and Notes
Leaders Join for Facilitator Conference Nearly half of the Wisconsin Chapter’s selfhelp groups were represented at the annual Facilitator Conference, held Sept. 29 at David and Mary Frick of Racine the Chapter of- were among those attending fice in Hartland. the Facilitator Conference. Presentation topics included MS research, specialized clubs and mission engagement, while a roundtable discussion gave everyone a chance to share ideas and best practices. The Wisconsin Chapter provides training and resources for those who are inter-
ested in being self-help group leaders. If you or someone you know would like to start a new group or join one that’s already formed, contact Meghan Schnabl, Mission Delivery manager, at 262-369-4420 or meghan.schnabl@nmss.org. Café con Leche Café con Leche, a telephone-based support group for native Spanish speakers, meets once a month for 90 minutes through June 11, 2013. Subsequent dates will be determined. Experts from different areas of specialization in MS will speak about important topics in MS care. Interested participants can register by calling 800-344-4867 and selecting Option 3 (Spanish dedicated phone line). New members are welcome to join at any time.
remington puts her Support on Display Even with being on crutches, Challenge Walk MS veteran Stacey Remington made a substantial contribution to the nearly $440,000 that participants raised in 2012. Part of her fundraising total came from $558 in pin-up sales. The paper cut outs give people a chance to write their name or message of encouragement in support of the MS Movement. Selling the pin-ups for $1 and $5 each at two bars in Sheboygan with the help of fellow Lakeland College alumni Eric Kriete, owner of the Silver Fern, and Ozgur Acar, manager of the Waterstreet Pub, Remington says the only thing she would do differently is distribute the pin-ups sooner and recruit more businesses to help sell them. “I wish I would have been using those every year!” MS Connection | 14
Walk MS 2013 Sites and Dates Announced
Mark your calendar for the Walk MS event in your community. Registration is now open! Sign up at walkMSwisconsin.org or call the Wisconsin Chapter office at 262-369-4400 or 800-242-3358. Sunday, April 21 Brown County Saturday, April 27 Eau Claire La Crosse Lake Country Menomonee Falls Wausau
Sunday, April 28 Fox Cities Kenosha-Racine Marshfield Platteville Sheboygan Waukesha Saturday, May 4 Grafton Fond du Lac
Sunday, May 5 Janesville Madison Milwaukee Saturday, May 11 NEW! Rhinelander
Dates and locations subject to change.
Show your early inspiration to making a difference. The 2013 Walk MS bandana is only available to those who sign up by Dec. 31 – and it’s free! Register at walkMSwisconsin.org. Teleconference Series Learn from home with the teleconference series. Held on the second Monday of each month at 7 p.m. CST, each hour-long call features expert information about living with MS. Register online by the Wednesday before each teleconference at wisMS.org or by calling 800-344-4867 (option 2).
SAVE THE DATE MS Summit New date. New location.
Saturday, March 16 Country Springs Hotel in Waukesha, Wis. Watch for details coming soon.
2013
Let everyone know you’re up to the challenge! Get your free 2013 Challenge Walk MS training I’m up to the T-shirt when challenge you register for the event participants call lifechanging. Sign up at challengewalkMSwi. org. (Already registered? Look for your T-shirt in the mail beginning in January.)
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I will: “The first thing I started to notice as my walking improved with Ampyra was my confidence in my ability to walk to meet my friends.” — Kristie Salerno Kent, diagnosed with MS in 1999.
AMPYRA® (dalfampridine) is indicated as a treatment to improve walking in patients with multiple sclerosis (MS). This was demonstrated by an increase in walking speed. New Safety Information Ampyra may cause serious allergic reactions, including rare occurrences of anaphylaxis. Important Safety Information Do not take AMPYRA if you have ever had a seizure or have certain types of kidney problems. 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. PAID ADVERTISEMENT
Walk on.
Walking better matters. AMPYRA® (dalfampridine) is the first and only medication shown in two clinical trials to improve walking in people with multiple sclerosis (MS). In these clinical studies, people who walked faster reported improvement in their walking-related activities. Not everyone responds to AMPYRA. Individual results may vary. Can be taken in combination with your other MS therapies. Visit Ampyra.com to find out more about a FREE TRIAL.
Talk to your doctor to see if prescription AMPYRA is right for you. In two pivotal trials 35% and 43% of patients taking AMPYRA responded to treatment vs. 8% and 9% of patients taking placebo. 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. For more information, please see the complete Medication Guide on the next 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. © 2012 Acorda Therapeutics, Inc. All Rights Reserved. 09/12 AMP1360
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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
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).
Distributed by: Acorda Therapeutics, Inc. Ardsley, NY 10502 Issued 08/2012
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. ©2012, Acorda Therapeutics, Inc. All rights reserved. 0812427ARH-1
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T:9.5”
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.
What are the possible side effects of AMPYRA? AMPYRA may cause serious side effects, including: • Kidney or bladder infections • Serious allergic reactions, including anaphylactic reactions 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.
BizTimes Names Dr. Smith a Health Care Hero
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tanya Smith, M.D., Clinical Advisory Committee member for the National Multiple Sclerosis Society-Wisconsin Chapter, was named one of BizTimes Milwaukee’s 2012 Health Care Heroes in the physicians category.
making a positive difference on the front lines of health care.
Smith, medical director of ProHealth Care Neuroscience Center Multiple Sclerosis Clinic, was chosen from more than 50 nominations. The annual Health Care Heroes awards salute people and organizations who are
Emigrating in 1991 from Poland where she received her degree as a doctor of medicine in neurology, she completed a second medical residency in order to practice in the U.S. She now sees approximately 300 MS patients through the
Dr. Smith helped open ProHealth Care Neuroscience Center’s Multiple Sclerosis Clinic and establish it as one of the leading centers for MS treatment in Wisconsin.
Clinical Trials in MS Information about ongoing clinical trials for MS is available on the National MS Society’s website www.nationalMSsociety. org/research/clinicaltrials/clinical-trials-inms/index.aspx. Where possible, links to further information are also provided. The Clinical Trials section of the NMSS site also includes a brochure and an online course to guide people through the process of deciding whether to enroll in a clinical trial. The lists posted are a sample of what appears on the clinical trials registry created by the National Institutes of Health, clinicaltrials.gov.
Stanya Smith, M.D., helped establish ProHealth Care’s MS Clinic
clinic, which is a National MS Society-affiliated Comprehensive MS Care Center.
Questions About MS? Call an MS Navigator Because no one should face MS alone, the MS Navigator information hotline is available to take your calls. Staffed by MS experts, MS Navigator provides personalized service, up-to-date information and practical resources and referrals.
Call MS Navigator
800-344-4867, Option 2 7 a.m. to 6:30 p.m. CST Monday through Friday MS Connection | 19
Three Wisconsin MS Leaders Honored Nationally
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hree Wisconsinites were among those honored last month for their outstanding efforts on behalf of the MS Movement when John Fleming, M.D., internationally acclaimed author Jeffrey Gingold, and Colleen Hayes, Ph.D., were inducted into the National Multiple Sclerosis Society Volunteer Hall of Fame during its annual Leadership Conference, November 8-10 in Dallas.
Gingold, an outspoken leader on behalf of the Wisconsin Chapter who helped establish the MS “Make a Mark for MS” on Wisconsin state income
Challenges of MS,” was translated into Polish this year), Gingold donates all proceeds from his book sales (including “Mental Sharpening Stones: Manage the Cognitive Challenges of Multiple Sclerosis”) to MS.
Dr. Hayes, a nationallyrecognized MS researcher and professor of biochemistry at the University of WisconsinMadison, was inducted in the Scientific ReDr. Fleming, an MS researcher searcher category for and clinician, was honored her instrumental role in with the Lifetime AchieveTopped in true Texas style, Colleen Hayes, bringing the relationship ment Award. He is a Chapter Ph.D., joined John Fleming, M.D. and Clinical Advisory Committee author Jeffrey Gingold at the Volunteer Hall between vitamin D and MS to the forefront of member, was a member of the of Fame induction ceremony during the NMSS National Leadership Conference, discussion. She has been Wisconsin Chapter’s Board November 8-10 in Dallas. involved as a research of Trustees and has served volunteer with the National tax forms, was inducted in nationally on the Society’s Multiple Sclerosis Societythe Programs and Services National Clinic Committee Wisconsin Chapter for more category. He has logged more and Medical Advisory Board. than 1,000 volunteer hours for than 15 years, speaking about He treats more than 500 MS her research locally and the National MS Society durpatients annually at the Uninationally, and contributing ing the past 12 years through versity of Wisconsin Hospital her knowledge to several presentations, and has taught and Clinics, MS Clinic. books. more than 1,000 clients about Dr. Fleming, who was previcognitive issues, the daily chalously inducted as a health She co-chairs an International lenges of being a person with professional and for research, Working Group on MS MS and effectively advocating has made presentations at for those affected by the disease. prevention studies, is on the Chapter events such as MS He was a Volunteer Hall of integration panel for the Research Now and MS SumFame Advocacy Honoree Department of Defense’s Conmit. Currently he is exploring in 2010. gressionally Directed Medical how microscopic worm eggs Research Program in MS, and change the immune response As an internationally is the co-chair for the Internain people with MS based on acclaimed author (his book, tional Taskforce for Vitamin D the hygiene hypothesis. “Facing the Cognitive and MS Prevention. MS Connection | 20
Five Common Myths about Money and Investing By Pam Evason
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or many of us, our thoughts and perceptions about money and investing develop during our childhood. As we age, we are rarely required to defend or challenge these beliefs (as the topic remains taboo in most social settings), which allows us to hold tight to these thoughts as a rare certainty within an uncertain financial landscape. What if something we’ve always believed about money simply isn’t true? Worse yet – what if our beliefs are limiting our financial potential? Below are five common money myths along with some alternative ways to look at the subject. Read them with an open mind and begin challenging your past beliefs! I don’t earn enough money to invest. It’s not how much money you earn – it’s what you do with it that dictates your ultimate wealth. At any income level, you can elect to develop and implement an integrated investment program that fits your specific situation and establishes a disciplined approach to savings. Even a seemingly small amount of savings can have a large impact. Consider this example: A 25-year-old individual earning $35,000/year elects to save $100 per month ($1,200 per year, less than 3.5% of their salary). By age 60 (assuming a 4% annual return), their savings will total approximately $90,300. A high salary is simply not a prerequisite for financial success. Investing is too complicated to understand. There’s no question investing and personal finance are difficult subjects to navigate. However, there
are countless resources available to investors to move them along this learning curve and eliminate this perceived barrier. Investment professionals work with clients every day to Pam Evason, CFA, interpret information CPA, is Managing and design investment Director at programs for clients’ Windermere Wealth specific situations. Many Advisors, LLC employers offer resources and serves on the and access to professionWisconsin Chapter Board of Trustees. als in connection with their 401(k) plans. The Internet also provides countless resources for investors, such as investor.gov, a website created by the U.S. Securities and Exchange Commission. I can delegate this responsibility entirely to my spouse or a professional. Consider other top priorities in your life – your marriage, children, career. Do you delegate all responsibility in those areas? My guess is that while you may seek some level of assistance, you are still very involved. The same should apply to another top life priority – your financial future. Work alongside your spouse and ensure your understanding and agreement with decisions and actions being taken. If you elect to work with an investment professional, ensure that you agree to and understand the plan they are implementing on your behalf and maintain continual contact to monitor progress against that plan and ensure your ongoing understanding.
Continued on Page 22
MS Connection | 21
It’s too early (or too late) for me to start saving for my retirement. Inactivity is not a viable investment strategy. It’s never too early or too late to start investing. Time has a significant impact on wealth accumulation, given the compounding of returns and the ability to grow savings in a tax deferred manner within many vehicles (401(k) plans and IRAs). Consider our example in #1 above. If the individual extends the savings program for five additional years, all else constant, the account will grow to $116,500, which is an additional $26,200 generated from $6,000 in cash contributions (five additional years at $1,200 per year). At virtually any age, you are better off taking action and putting together an investment program that meets your own individual situation and needs. Investing is too risky, I’m keeping my savings in cash.
It is true that all investments present varying elements of risk. However, this includes cash, which is subject to loss of value over time due to inflation (the rising costs of goods and services over time). As a result, leaving all of your savings in cash does not entirely insulate you from risk. Armed with an understanding of your current situation, future goals, your return and risk preferences, and the investment options available to you, you can construct a welldiversified portfolio that presents an amount of risk that you are comfortable with. This process is complex and requires careful and ongoing analysis – but as noted in #2 above, there are professionals and resources to assist you. 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 pam.evason@windermerewealth.com. 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.
Challenge Walk MS 2012 was a Record-Breaking Success
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etting records for participant numbers and total dollars raised, this year’s Challenge Walk MS participants showed amazing dedication to creating a world free of MS. More than 220 individuals raised nearly $440,000 to fund MS-related research, programs and services. Held September 21-23, walkers, Super Crew and volunteers welcomed autumn while traversing 30 or 50 miles throughout Door County’s scenic peninsula over the three days. Evening celebrations at the Alpine Resort, a robust silent auction, a presentation by Alex Ng, Ph.D., F.A.C.S.M., and the camaraderie of support for those affected by MS rounded out the weekend. Registration for Challenge Walk MS 2013 is now open. Visit challengewalkMSwi.org Nearly $440,000 was raised through Challenge Walk MS 2012 to fund MSfor details.
related research, programs and services.
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Join the 30th Annual MS Snowmobile Tour
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uided and groomed trails. Breakfast, lunch and dinner. Evening celebrations and special prizes. The 2013 MS Snowmobile Tour promises to be everything riders have come to expect and more. Planning is underway to make it a stand-out event commemorating the Tour’s 30th year. Slated for January 24-26, 2013 the Tour will be held at a new location: the Telemark Resort in Cable, Wisconsin. Riders travel up to 150 miles each day with full mechanical support provided. “The 30th Annual Tour has a new level of excitement with some new trails,” said Mark Schmidt, co-chair of the Tour’s Volunteer
Committee. “We’re looking forward to this adventure in Cable.” Other members of the Volunteer Committee are Marty Iverson (Trailmaster), Gordy Carlson, John Downs, Monika Iverson, Randy Murdock, Jack Murray, Donnie Rowe, Scott Smith and Shannon Uttech. Participants pay a $45 registration fee and have a minimum fundraising goal of $650. First-time MS Snowmobile Tour riders can register for free (call the Wisconsin Chapter office and ask for your “Ticket to Ride”). Register at MSsnowmobiletour.org or by calling 262-369-4400 or 800-242-3358.
There’s still time to win! The MS Snowmobile Tour Volunteer Committee is raffling off a Packers-themed 2013 Ski-Doo MXZ 600 Sport and a Badgers-themed 2013 Polaris Indy 600 SP. Other prizes include cash awards and a rider registration for the 2014 MS Snowmobile Tour. Buy your tickets for $10 each by emailing mssnowtoursledraffle@gmail.com or visiting the Wisconsin Chapter office. The drawings will be held January 25, 2013. You don’t need to be present to win.
Thank You, 2012 Challenge Walk MS Sponsors
MS Connection | 23
Non-Profit Organization U.S. Postage
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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 1 800 242 3358 • 262 369 4400
Make a Mark for MS Improve quality of life and ensure continued independence for those living with multiple sclerosis. Contribute by checking the box on your Wisconsin state income tax form and making a donation.
Every dollar stays in Wisconsin. For more information about this critical program, visit wisMS.org