Winter 2011 MS Connection by National Multiple Sclerosis Society-Wisconsin Chapter

Winter 2011

Championing the Cause

MS Snowmobile Tour Powers the Movement Special Message from the Chapter President

Wisconsin Board of Trustees Kenneth Minor, Chair Sonic Foundry, Inc. Michael Lutze, Vice Chair Ernst & Young David Rodgers, Vice Chair Briggs & Stratton Corporation Alyson Zierdt, Past Chair Attorney, Retired James Rose, Treasurer Baker Tilly Virchow Krause LLP Robert Sowinski, Secretary Diversified Insurance Services, Inc. Colleen Kalt, President & CEO National MS Society Wisconsin Chapter Robert Buhler Open Pantry Food Marts of Wisconsin, Inc Dennis Christiansen Community Advocate Robert Engel Retired, M&I Bank

Tom Golden M3 Insurance Solutions for Business Martin McLaughlin Reinhart Boerner Van Deuren, S.C. Bruce Olson The Marcus Corporation Shelley Peterman Schwarz Meeting Life’s Challenges David Raysich Plunkett Raysich Architects Patricia Raysich Community Advocate Jeffrey Steren Steren Management/McDonald’s Robyn Turtenwald Community Advocate Molly Walsh Waisman Center

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.

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National Multiple Sclerosis Society Wisconsin Chapter

Annual Meeting Tuesday, December 6 The Wisconsin Chapter’s Annual Meeting is scheduled for Tuesday, December 6 from 6-8 p.m. at the Chapter offices, 1120 James Drive in Hartland. The Annual Meeting is held for the purpose of electing a Board of Trustees, reviewing the treasurer’s report and considering other appropriate business and reports that may be presented. Individuals can submit names to the Chapter’s Governance Committee for consideration for Board of Trustees membership by contacting Melissa Palfery at 262-369-4419 or melissa.palfery@nmss.org. The event is open to the public. Reservations are required. For more details or to R.S.V.P. by December 1, please call (800) 242-3358.

Separate recognition events for fundraisers and volunteers are currently being planned. Watch for more information as it becomes available. MS CONNECTION: Winter 2011

How Will You Champion the Movement? Each of us contributes to this Movement to end MS in our own way. In doing so, we each share a connection. We each become a champion for the cause. We each embrace our ability to lead the way. Father Charlie Brooks, featured on the cover of this magazine and profiled beginning on page 12, has been leading the way for more than 20 years. He’s a familiar face on the annual MS Snowmobile Tour. He has donated to the Scholarship program. He has named the Society in his will. He has made a decades-long commitment in honor and memory of a sister who lived with MS for most of her adult life. He does it all – riding the trails to raise awareness, writing letters to raise funds, remembering the National Multiple Sclerosis Society in his estate planning – in ways that are personally meaningful to him. He does it in his own way … just like you. Regardless of what you can give to the Movement at this moment – whether it’s time, talent or treasure – it makes a difference. Whether it’s riding a bike, writing a check or volunteering with a do-it-yourself fundraiser, your efforts propel Chapter President & CEO Colleen this movement forward. Kalt with Father Charlie Brooks, a Where will they take us? Where will we be a year from now? champion of the Movement. What will have been discovered and what will have been improved? None of us can say, but that doesn’t stop us from trying. If we’ve come this far together, imagine how much farther we can go. If you start recruiting for your Walk MS team now, begin training for Bike MS: Best Dam Bike Ride one month earlier, or add a few dollars more when you make your annual personal contribution, how much faster will we get to our ultimate goal – a world free of MS? Father Brooks has brought a lot to the Movement and been a leader in what we’ve We all share this connection. We are all accomplished so far. So have others you’ll champions for the cause. We all have the read about in this magazine – people like capacity to lead the way. Dr. Douglas Woo, Nina Slowik and the 217 - Colleen Kalt Challenge Walk MS participants who made the 4th anniversary event a record-setting success. Who will be the next leaders moving forward? As we approach the end of the year, we hope you will be inspired to take action in your own way to help fund further research for a cure, address the needs of those diagnosed, and attract more promising bright minds dedicated to serving those affected by MS. Thank you for moving us forward. Sincerely,

Colleen G. Kalt President & CEO TOLL FREE NUMBER 1 800 242 3358

Bright Minds

Scholarship Program is an Investment in Growth College is a fresh start, a chance to grow ones skills, develop new talents and fulfill lifelong dreams. For those living with multiple sclerosis, it’s an opportunity that’s too often sacrificed as families are forced to accommodate the disease that has intruded on their lives. The compounding costs of lost wages, expensive drugs and medical care can leave little to cover additional expenses like college tuition.

college averaging more than $8,000 per year, and without the assistance of programs like the Wisconsin Chapter MS Scholarship Program, even more young adults affected by MS would need to defer or entirely forego their dream of a college education. Given the increased financial pressures families today are facing, the Wisconsin Chapter again expects to receive more applications in 2012 than it will be able to fulfill. Donations to the program will help offset After college, I hope to be working at a job that I the costs these deserving students face, and could enjoy and can put my math and science skills to work. help ensure that even more - Katherine Hager, 2011 scholarship recipient young adults affected by The National Multiple Sclerosis Society’s scholarship MS can afford to further their education. program was created to help offset those expenses and To contribute to the future of the promising young fill a void in scholarship assistance for those diagnosed minds who have been touched by MS in some way, with multiple sclerosis and their families. Launched in contact Denise Jendusa at 262-369-7166 or 2004, the program has since provided $1 million in denise.jendusa@nmss.org. scholarships to 639 students nationwide. In Wisconsin, 190 students have been funded through awards totaling One Scholar’s Story $265,000. In addition to scholarships at the Chapter level, For Jenna Wolfsohn, the National Multiple Sclerosis recipients are eligible to be named Top Scholars by the Society’s Scholarship Program created something National Multiple Sclerosis Society. Wisconsin’s Rebecca positive for her family following her mother’s 2009 LeBeau was one of 17 students selected from across the diagnosis. U.S. in 2011, joining an elite group of five other Top A sophomore at Hartland’s Arrowhead High School Scholars from Wisconsin in the past eight years. With when her mom was diagnosed, Wolfsohn found it the Top Scholar designation comes additional funding difficult to concentrate on her school work, wanting that LeBeau will use along with the T. Ferguson Locke instead to help her mom and enjoy her company while MS Scholarship from the Wisconsin Chapter to help she was still “the mobile and wonderful woman I’ll fund her studies. always hold in my heart.” Redoubling her efforts and focusing on her schoolwork, Wolfsohn went on to Your gift can help the class of 2012 perform in numerous theatre productions, run Cross The scholarship program is only possible because Country and graduate in the top five percent of her class of individuals and foundations that recognize the value with high honors in six advanced-level courses. She also of a college education, particularly for those touched found time to volunteer with a number of organizations by MS. With the cost of tuition at a public four-year

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Bright Future

Applications Being Accepted for 2012 Scholarship Awards The MS Scholarship Program is designed to open doors for young adults affected by MS who have demonstrated strong leadership potential, academic excellence and financial need by ensuring the financial impact of MS doesn’t stand in their way of achieving a college education. Applications are being accepted through January 13, 2012. To qualify, applicants must: • Be a high school senior or high school (or GED) graduate. • Have a parent who has multiple sclerosis or have MS themselves. • Be attending an accredited post secondary school for the first time. • Be a resident of Wisconsin.

including the National MS Society, going so far as to organize a Hoops for Hope basketball tournament that raised more than $7,000. Now a freshman at the University of Southern California, Wolfsohn is double majoring in Biology and English in the Baccalaureate Medical Program thanks in part to the scholarship she received. “This program took such a negative aspect of our lives and turned it into an opportunity to more easily fund my undergraduate education and my dream of becoming a doctor,” she explained. “We all have had the unfortunate situation of having MS afflict someone in our family, but the program’s support reminds us that people are watching out for us and that we can pursue our educational goals.”

Applications are processed by the ACT national nonprofit organization before being sent to the Wisconsin Chapter for further review by the MS Scholarship committee. Comprised of leadership

Scholars are selected on the basis of: Academic performance and potential Leadership and participation in school or community activities Work experience Statement of educational and career aspirations Compelling personal or family circumstances Financial need An essay on the impact of MS on the applicant’s life An outside appraisal volunteers, the committee provides guidance on the program, selects scholars, determines award amounts, engages and mentors past scholars, and provides financial support through donor cultivation. Applications are currently available through the Wisconsin Chapter website, wisMS.org. They must be completed and submitted electronically no later than January 13, 2012. To learn more, contact Dawn Thaves at 262-369-4403 or dawn.thaves@nmss.org. Jenna Wolfsohn

TOLL FREE NUMBER 1 800 242 3358

MS Clinic at Froedtert & the Medical College of Wisconsin

Dr. Douglas Woo Leads MS Clinic with a Focus on the Future Dr. Douglas Woo, who at age 37 is the youngest member of the Wisconsin Chapter Clinic Advisory Committee (CAC), is an assistant professor of neurology and the director of the residency program in the Department of Neurology at Froedtert & the Medical College of Wisconsin. Originally from Hawaii (also the birth place of fellow CAC member Dr. John Fleming), Dr. Woo came to Wisconsin to do his undergraduate program at

“I think the most important thing for each patient is making sure their individual needs are met,” he said. “Each patient is different. They are not a cookie cutter. You have to get to know each individual’s needs. “I think our relationship with the National MS Society gives us the ability to tap into resources we wouldn’t have otherwise,” he added. “There’s literature, networking abilities and the fellowships which are important for increasing the number of MS physicians.” The National MS Society fellowship program brings young investigators and doctors into the field The most important thing for each patient is of MS. In fact, Dr. Woo took part in making sure their individual needs are met. the MS Clinical Fellowship Program at - Dr. Woo the University of Texas Southwestern Marquette University before going to medical school at Medical Center in 2005 and 2006. the Medical College of Wisconsin. After he completed He returned to the Medical College of Wisconsin a clinical fellowship in multiple sclerosis, he returned to after his fellowship to be the program director of the Froedtert & the Medical College of Wisconsin, where he residency program, training up-and-coming neurologists. has worked since the summer of 2006. He has a comprehensive approach to education with a Patients with MS make up about 75 percent of program that includes exposure to a range of conditions, his practice. “I like working with the people I have as including multiple sclerosis. patients,” he said. “The He said, “It’s field in multiple sclerosis is important that very innovative, with a lot neurologists learn of new things coming on.” as much about The Multiple Sclerosis MS before they go Clinic at Froedtert & into their general the Medical College of practice.” Wisconsin is one of six According to National MS Society Dr. Woo, physicians Affiliated Centers for at the Froedtert & Comprehensive Care Medical College of in Wisconsin. It offers Dr. Douglas Woo (left) is a member of the Clinic Advisory Wisconsin Multiple multiple programs to help Committee along with (from left to right) Drs. Loren Sclerosis Clinic are those with MS, including a Rolak, Bhupendra Khatri, John Fleming and Stanya Smith. involved in a wide spasticity clinic, neurology Not pictured: Drs. Eric Maas and Merle Teetzen. range of research in clinic and other areas of addition to patient specialty. “We do a range of treatments,” Dr. Woo said. care. That includes Dr. Woo, who is collaborating on a The clinic offers physical, occupational and speech project with Marquette University looking at fatigue in therapists. Psychiatric care is also available. “Even with MS. Alexander Ng, whose previous research has been MS, you can still live well through thinking well,” Dr. supported by the National MS Society, is also a principal Woo explained. investigator on that study.

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Disability Benefits

What to Do If You’re Asked to Take a Consultative Exam By Attorney Thomas E. Bush

A claimant for disability benefits from the Social Security Administration (SSA) may be asked to attend a consultative examination by a doctor who has a contract with SSA to perform such examinations. If you get a notice to attend a consultative examination, you should go to the appointment and participate fully in the examination. Do your best on any tests administered. Answer the doctor’s questions truthfully, neither exaggerating nor minimizing your physical or mental problems. Usually a consultative examination is scheduled simply because the disability examiner does not have enough information to decide the case. Perhaps a claimant with MS mentioned depression or some other

In Wisconsin, consultative examinations are usually scheduled because the disability examiner wants to do a thorough job. They are not scheduled because the disability examiner is looking for reasons to deny the claim.

a thorough examination recently. You can ask to be allowed to resolve these problems instead of attending a consultative examination. You can get the records. You can ask your doctor’s staff to transcribe the Wisconsin’s Tom Bush shares SSDI records. expertise gleaned over 20 years. You can ask your doctor if he or she is willing to perform a consultative examination for the (relatively low) fee paid by SSA for such examinations. Under an SSA regulation that is seldom applied, if your doctor is “qualified, equipped and willing” to perform the examination, your doctor is the “preferred choice” for doing an SSA consultative examination. At your request, the disability examiner will reschedule the consultative examination with your own doctor. Your doctor likely brings to the examination a lot more information about your impairment than a consultative examiner can glean from records.

mental impairment as part of the reason the claimant cannot work but has never been treated by a mental health professional. Thus, a psychological consultative examination may be scheduled. In Wisconsin, consultative examinations are usually scheduled because the disability examiner Under an SSA regulation that is seldom wants to do a thorough job. They are not scheduled applied, if your doctor is “qualified, equipped because the disability examiner is looking for reasons and willing” to perform the examination, your to deny the claim. doctor is the “preferred choice” for doing an If your MS is treated by a reputable neurologist, SSA likely will rely on examination findings in SSA consultative examination. your neurologist’s records. It is so unlikely that SSA would schedule a physical consultative examination when it has your neurologist’s records, if you get a Tom Bush is the preeminent expert on SSDI in Southeast notice that one is scheduled it might be worthwhile to Wisconsin. A Wisconsin Chapter volunteer for 20 years, telephone the disability examiner to inquire if there has he was inducted into the National MS Society’s Volunteer been a mix-up. The answer could be that they have been Hall of Fame in 2008. Tom’s website is www.tebush.com. unable to get your neurologist’s records, that the records are unreadable, or that your doctor has not done TOLL FREE NUMBER 1 800 242 3358

Matching Gift Programs

Your Employer Could Double or Triple Your Donation Nina Slowik has been raising money for the Movement for the past 10 years, riding in Bike MS: Best Dam Bike Ride in support of a co-worker’s wife who was diagnosed with multiple sclerosis. A dispatcher at Rexnord, the leading worldwide power transmission and water management product manufacturer headquartered in Milwaukee, Slowik has utilized the company’s matching gift program each year to grow the size Nina Slowik uses her employer’s matching gift of her donations. “I saw it as a good program every year. opportunity to increase my fundraising,” she said of tapping into the companysponsored resource. “It helped me raise more money for the people that are affected by this dreaded disease and made more money available for research.” The process, she adds, wasn’t difficult. “With minimal effort you’re able to increase your donations.”

While guidelines vary by company, the results of employer-sponsored matching gift programs are the same: more money that moves Wisconsin toward a world free of MS and supports the services that help those who have been diagnosed. While not all organizations offer such a benefit, those that do often match dollar-for-dollar what their employees donate; some double or triple it. Check with your human resources department or visit the Chapter’s Donations page at wisMS.org and use the Matching Gift Search Tool (located under the Matching Gifts headline) to find out if your company

I saw it as a good opportunity to increase my fundraising. It helped me raise more money for the people that are affected by this dreaded disease and made more money available for research. - Nina Slowik has a program. If it does, be sure to find out how the matching gift request needs to be submitted. Contact the Wisconsin Chapter at info.wisMS@ nmss.org or 1-800-242-3358 for more information.

The impact of Matching Gifts in 2011

131

companies matched gifts to the National Multiple Sclerosis Society-Wisconsin Chapter

More than

130,000 in Matching Gift dollars were donated

394

Matching Gifts were received

*All numbers reflect totals for fiscal year 2011.

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Income Tax Donation Program

What’s Raised in Wisconsin Stays in Wisconsin In 2005, committed volunteers helped the Wisconsin Chapter successfully lobby Madison to include a check-off option on the state’s annual income tax forms allowing residents to make a donation to MS. The benefit to Wisconsinites affected by MS was dramatic with nearly $85,000 raised that first year alone. By donating specifically through the Make a Mark for MS program: • 100% of the money stays in Wisconsin. • The gift remains anonymous. • You’ll help directly support the needs of those with MS in our state. Funds that come from Make a Mark for MS are used to help those who have the disease cover the cost of programs, services or equipment that aids in mobility and maintained independence. These could include the installation of a wheelchair lift that would allow the mother of five to continue driving the family mini-van to work and school, or allowing a grandmother to watch her grandson play soccer for the first time thanks to a scooter purchase. With the average annual cost of MS estimated to be nearly $70,000 per person in medical-related expenses and lost wages, it’s easy to see why the funds provided through Make a Mark are so important. Last year 90 people were helped.

Although more than $425,000 has been raised through Make a Mark since it first appeared on Wisconsin income tax forms, the annual amounts have been decreasing year-toyear due in part to economic conditions. You can help reverse that by making your own tax check-off donation and letting family, friends, neighbors and your tax professional know what earmarking an income tax donation for MS can do.

Make Tax Donation for MS

How you can help:

• When it’s time to complete your state income taxes, find the donations line and enter the amount you would like to donate to multiple sclerosis. • Tell your family, friends, neighbors, co-workers, Facebook friends and anyone else you can think of about the Make a Mark for MS income tax donation program. Letting them know you have a connection to MS may encourage contributions. • Ask your accountant or tax preparer if you can provide information about MS for them to share with their clients. • Ask your employer to display information to promote the Make a Mark for MS program. (A poster and flyer are available on the Wisconsin Chapter website, wisMS.org.) • Place a notice about the Make a Mark for MS program in the bulletin, newsletter or website of your place of worship.

Make a Mark for MS 14 Donations (decreases refund or increases amount owed) a Endangered resources

.00

f Firefighters memorial

.00

b Packers football stadium

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g Prostate cancer research

.00

c Breast cancer research

.00

h Military family relief

.00

d Veterans trust fund

.00

i Feeding America

.00

e Multiple sclerosis

.00

j Red Cross WI Disaster Relief

.00

A donation area similar to this will be on 2011 state tax forms. All dollars designated for MS stay in Wisconsin.

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Break Out Your Dancing Shoes

New Event Would Blend Movement, Music and Fun Hines Ward. Buzz Aldrin. Wendy Williams. Mike “The Situation” Sorrentino. If these and other famous “Dancing With the Stars” contestants have demonstrated anything, it’s that no one can deny the growing popularity of—and diverse participation in—ballroom dancing. But not only is it a fun social event, it’s good exercise. “There are a lot of potential benefits for people with multiple sclerosis,” said Alexander Ng, an associate professor at Marquette University in Exercise Sciences who studies fatigue in MS and has previously been funded by the National Multiple Sclerosis Society. After hearing about studies on ballroom dancing for people with Parkinson’s disease, Ng thought it might have potential for people with MS. That’s the idea behind “Ballroom Dance for MS,” an informal event designed to be fun, get people moving and help gauge the potential for future dance-specific training or intervention study. Led by Ng and his colleague, Pamela Landin, a fellow exercise physiologist at Marquette University and

professional dance instructor, the event is tentatively being planned for early 2012. More details will be made available as they are finalized. In the meantime, anyone interested in volunteering to help with or Dr. Alexander Ng is interested in take part in the learning if people with MS would benefit from ballroom dancing. event should contact Meghan Schnabl at 262-369-4420 or meghan.schnabl@nmss.org.

Tax Deductions Beyond Medicine Many of the expenses associated with managing MS might be tax deductible, beyond medicines. (Keep in mind that only unreimbursed medical expenses that exceed 7.5% of your adjusted gross income are deductible.) Here are additional possibilities: • Equipment and extras, such as service dogs (and dog food!) and transportation to doctor appointments via car service or taxi if you can no longer drive. • Home modifications that don’t increase a home’s value. “Get a doctor’s prescription for ramps, wider doorways, grab bars, even a swimming pool, as well as a letter from a real estate agent stating that these changes don’t make your home more valuable,” suggests Anne Davis, program director of Legal Services for the Society’s New York City and Southern New York Chapter. For people receiving SSI or disability benefits, impairment-related work expenses may be deducted from their earnings, if their income might otherwise jeopardize their government benefits. Two IRS Publications – 907, Tax Highlights for Persons with Disabilities (www.irs.gov/pub/irs-pdf/p907.pdf ) and 502, Medical and Dental Expenses (www.irs.gov/pub/irs-pdf/p502.pdf ) – may be helpful. Consult an accountant to make sure your particular situation is in line with current IRS regulations.

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Living With MS

Information on Preparing For Pregnancy The good news about planning a pregnancy when you have MS is that there’s no evidence that MS has any effect on fertility; pregnancy usually reduces exacerbations (although flares do tend to increase postpartum); and good outcomes are the norm. Nevertheless, making the decision to get pregnant can be complicated, primarily because of the physical challenges of MS, says Barbara Green, MD, director of the West County MS Center, St. Louis. “I also suggest women think about and discuss with their partners the emotional and financial challenges of raising a child, which could affect work and managing the disease.”

Connect the team Connect your obstetrician and neurologist to coordinate your care. Visit www. nationalMSsociety.org/ pregnancy for “Pregnancy, Delivery and the Post-Partum Period” to share with health-care professionals. If anesthesia is part of your birth plan, arrange a meeting with the anesthesia team. All forms of anesthesia are considered safe for women with MS. Don’t wait to plan for what happens after delivery. Tap family and friends about helping with housework, food and, of course, watching the baby!

Meds, pregnancy and MS None of the disease-modifying drugs (DMDs) are approved for use during pregnancy, and most should not be taken for a few months beforehand. “The risk time is when you’re attempting to conceive,” noted Dr. Green. Plan a discussion with your neurologist about when to stop DMDs—and when, after delivery, to begin them again. “Until recently, most studies were neutral about whether breastfeeding was protective in preventing relapses,” says Dr. Green. “But a new study quotes a beneficial effect on relapse. People with non-aggressive disease may be able to wait to resume DMDs, which can’t be taken while nursing.” Include any symptom-management medications in the discussion with your doctor. From bladder problems to fatigue, pregnancy can make MS symptoms worse, yet many meds are not safe for pregnant women. “We advise people on non-pharmaceutical approaches: getting enough sleep, adjusting work schedules and exercising,” says Dr. Green. “Symptoms during pregnancy are probably not MS—tiredness doesn’t mean your symptoms are coming back,” says Eileen Davis, APN, who has worked with people with MS for 12 years in New Jersey and New York. Keep exercising, she recommends, “so you aren’t carrying unnecessary weight post-pregnancy, which can affect symptoms such as falling.”

Resources on MS and Pregnancy Check out the Society’s collection of videos, books, booklets and Web pages that you can download, or call for free print copies. www.nationalMSsociety.org/pregnancy “MS and Starting a Family” Momentum, Winter 2010-2011 nationalMSsociety.org/Momentum (click “Back Issues”) Kara’s Story – Part I and II The National MS Society follows Kara from her first trimester all the way through the birth of her baby boy youtube.com/watch?v=f1-heWHC7jI youtube.com/watch?v=npgN99NeD1k&feature=channel The MS Daily Minute nationalMSsociety.org/dailyminute Sixty-second videos packed with information on • Beginning MS Therapy after Pregnancy • Relapses During Pregnancy • Breastfeeding with MS • Support During and After the Pregnancy

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The Legacy of a Brother’s Love

Across Multiple Decades and Countless Miles, Love for his sister has driven Father Charles “I’m terrible Brooks to raise significant funds for multiple at asking a person sclerosis over the past 27 years. face-to-face to Brooks, 74, is a long-time rider and top contribute,” fundraiser of the MS Snowmobile Tour. He explained Brooks, became familiar with the National Multiple who entered Sclerosis Society’s mission after his older sister, seminary in the Theresa, was diagnosed with multiple sclerosis in early ’50s and was the late 1970s. ordained in May The MS Snowmobile Tour meant the of 1965. “But as a chance to do something to help his sister while priest I knew a lot participating in one of his favorite activities. The of people in the Tour, celebrating 29 years in 2012, has raised parish – so I wrote more than $6 million to power MS research to all of them. and support those affected by MS. (For more Other parishes information on the MS Snowmobile Tour, see gave me permission page 14.) Father Charlie Brooks has been a dedicated to write to them An avid snowmobiler since he was 29, Brooks fundraiser for MS research, programs and as well.” took every opportunity to ride the trails near his His efforts services for nearly 30 years. home. It had become a hobby of his, a way to paid off, garnering escape into the beautiful woods of Wisconsin and pass donations that have moved the mission forward. time during cold winters. “I am motivated to raise funds by a need to help all Brooks grew up in a little community called those who have MS, as many as I can, and see if we can Askeaton, 18 miles east of Appleton. From a large family, come up with a cure soon,” he said. “We are certainly getting much closer I think and people are at least improving with the new medications.” I’m terrible at asking a person face-to-face Every year that Brooks rides is his to contribute. But as a priest I knew a lot of way of helping his sister and others people in the parish – so I wrote to all of them. affected by MS. - Father Brooks “It all began for her and others like he was the 13th of 16 children. Theresa was about five her,” he said. “I wanted to do something to help them years older than him and struggled with symptoms the out. And now I know lots of people with MS.” family thought were due to a back injury. It was 20 years before she was diagnosed with MS. Inducted Into the Volunteer Hall of Fame “She went from the back injury to being disabled in a In 1999, two years after Theresa passed away after matter of about three years,” he explained. “It went very a battle with breast cancer, Brooks was inducted into fast. I think she first had paralysis in her late 20s.” the National MS Society’s Volunteer Hall of Fame for Once his sister was diagnosed, Brooks threw fundraising. himself into fundraising, asking for support from his “That was certainly one of my highlights, there congregation, friends and family. is not doubt,” he said of his induction in the Volunteer

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Father Charlie Brooks’ Dedication Endures Hall of Fame. “That was remarkable. I sure met a lot more of the same kind of people: charitable, generous, good people committed to MS.” He shared that he appreciates the dedication of people who work on behalf of those with MS, including MS researchers. “I’m grateful for the many scientists who work on MS,” he said. “I have had great chances to meet a number of them over the years. They are truly top notch scientists.” Supporting the Scholarship Program Over the years, Brooks has designated a portion of the funds he raises to the MS Scholarship program. (For more details on the MS Scholarship program, see Pages 4-5.)

A familiar face on the MS Snowmobile Tour, Father Brooks (left) also supports the Scholarship Program and is a member of the Lawry Circle. “Helping these young adults, who have parents that are struggling with the disease, it frees them up a little bit from worrying about the total cost,” he explained. In 2008 for the 25th anniversary of the MS Snowmobile Tour, the Father Charles Brooks Scholarship was established in recognition of Brooks’ contribution to

the program, an experience he called “very humbling.” “It was very humbling without a doubt,” Brooks said of the named scholarship.

I am most impressed with the Snow group’s community spirit, their love for others, their concern for others. I think that is one of things that has really kept me going back. - Father Brooks In addition to his many contributions to the Society throughout the years, Brooks is a Lawry Circle member. The Lawry Circle is a distinguished group of people who have remembered the National MS Society in their estate plans by designating the Society as the beneficiary of a bequest, annuity, life insurance policy or other deferred gift. Committed to the Cause Brooks served as a hospital chaplain for 16 years and was able to spend a lot of time with his sister who lived nearby. “I used to stop and visit with her almost every day, to spend time with her and her husband and four kids.” His service continued in a parish in De Pere for another 12 before settling in at St. Edward Parish of Mackville in Appleton. He retired almost five years ago and now spends his winters in Mesa, Arizona. This year, he will come back to Wisconsin for Christmas and stay the month of January to attend the 29th MS Snowmobile Tour. “I am most impressed with the ‘Snow’ group’s community spirit, their love for others, their concern for others,” Brooks said. “I think that is one of things that has really kept me going back. It should be an enjoyable year with the group at the MS Snowmobile Tour.” Bethany Sievert contributed to this article.

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MS Snowmobile Tour

Smiles and Meaning in Every Mile Billed as a fun ride for a great cause, the annual MS Snowmobile Tour brings together nearly 200 enthusiasts for a weekend traversing the trails in northeast Wisconsin, with the hope that the money they raise will power the research that will end MS forever. Led by event co-chairs Mark Schmidt and Marty Iverson, the family-friendly event is a fun, all-inclusive, fully-supported experience that features:

January 26-29, 2012, Carter, Wisconsin Don’t have your own sled? Don’t let that stop you! You can rent one or ride with someone else! For details contact the Wisconsin Chapter at 1-800-242-3358 or info.wisms@nmss.org

• Guided trails • Evening celebrations • Three nights lodging at the Potawatomi Carter Casino Hotel • Six meals (two breakfast, two lunch, two dinner) • Mechanical support throughout the weekend • Silent auction, raffle and prizes, and more! Participants are asked to raise a minimum of $650 each, although many have been so successful that the MS Snowmobile Tour has raised more than $6 million throughout its 28-year history for MS research and related services. There’s still time to register! Visit MSsnowmobiletour.org or call 1-800-242-3358. First-time riders can register for free! Enter code MSSTrookie2012, or call 262-369-4400 (800-242-3358) and ask for your MS Snowmobile Tour Ticket to Ride. (Refunds cannot be given to first-year riders who are already registered.)

Special Thanks to the 2012 MS Snowmobile Tour Volunteer Committee! John Downs Monika Iverson Randy Murdock Keith Paul

Donnie Rowe Bob Schmidt Craig Schmidt Scott Smith

Additional thanks to committee co-chairs Mark Schmidt and Marty Iverson.

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The MS Snowmobile Tour is a great time for riders of all skill levels, and first-time participants can register for free.

Olympic Medalist Named MS Ambassador

Ski Event Again Names the Society as Charity of Choice Participants in the 2012 American Birkebeiner Skiers for Cures weekend in February will have the chance to win a trip to Norway and spend time with one of the biggest names in cross-country skiing, Vegard Ulvang, fresh off his trek to the South Pole. It will be the fourth year that American Birkebeiner has named the National Multiple Sclerosis Society as its Skiers for Cures beneficiary. To date, Birkie skiers and their supporters have pledged more than $220,000 to power MS research.

American Birkebeiner is the largest Nordic ski event in North America. Held in Wisconsin near Hayward, the weekend includes ski races, sprints and family events along with equipment demos, music, food and entertainment. It’s billed as an event for both the “super fit and like-minded fitness buffs” as well as “those wanting pure and simple recreation.” Participants are invited to fundraise for the National MS Society as the event’s charity of choice. Ulvang, a six-time Olympic medalist and threetime Holmenkollen 50K winner recognized as one of Norway’s Top Ten Nordic skiers of all time, will participate as a “Research Ambassador” for the Wisconsin Chapter. Currently the executive director of FIS Nordic and the creator and director of the hugely successful Tour de Ski, Ulvang will be coming off an 800-mile planned

Leading Skiers for Cures donors will have the chance to ski with Olympic-medalist Vegard Ulvang. trek across Antarctica commemorating the 100th anniversary of the discovery of the South Pole by fellow Norwegian Roald Amundsen. Those contributing $2,000 or more to Skiers for Cures will have the opportunity to ski with Ulvang and enjoy a private lunch with him afterwards. More details about Skiers for Cures are available at wisMS.org, by calling 262-369-4407 or by e-mailing kelly.zimmerman@nmss.org.

Other Skiers for Cures Opportunities Win a Trip to Norway’s 2013 Birkebeinerrennet Donors will receive one entry in a drawing to win a trip for two to Norway’s 2013 Birkebeinerrennet for every $250 contributed to Skiers for Cures. The trip includes two race entries, three night’s lodging and a $1,500 voucher for air travel.

Skiers for Cures Pins The popular Ski for the Cure pin will once again be available for $20 at the American Birkebeiner Expo (or online at wisMS.org). Those wearing the pin on their Birkebeiner or Kortelopet race bib when they cross the Finish Line will be randomly selected to win prizes.

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Community Events Reflect Do-It-Yourself Mentality

New Tools for Raising Money Everywhere, In Every Way The Movement for a world free of MS has benefitted immeasurably from those who go beyond the Society’s signature events to raise money that drives research and funds services. Through their own ingenuity and passion, these doit-yourselfers put together their own community event fundraisers that last year contributed more than $200,000 locally to the mission. From denim days and luncheons to poker tournaments and Zumbathons, they get involved in ways that are fun and have a direct impact in helping those affected by the disease. The Carney Roundup Rodeo 2nd Annual Chilly Willy Open Horse Show was one such event held recently. Encouraging participants to “take the reins for MS,” it featured 106 horses and a T-shirt sale that together raised $1,500. For its second annual fundraiser, the Milwaukee area Generation OptiMiStic hosted a Miller Brewery Tour. Free food and beverages were provided by MillerCoors, and donations of $15 in advance and $20 at the door were requested. Together with a raffle and silent auction, more than $4,000 was raised. Those types of third-party fundraisers, previously referred to as community events, have now been renamed “Do It Yourself Fundraising.” Emphasizing the critical role these events, and their dedicated organizers, play in raising money for the mission, the new name comes with a set of new online resources to help make their efforts even easier. Available through the Wisconsin Chapter website, the DIY Fundraising pages include tips, tools and answers to commonly asked questions about creating your own events. Find them online at wisMS.org.

In taking the reins for MS, the Carney Roundup Rodeo 2nd Annual Chilly Willy Open Horse Show recently raised $1,500. It’s an example of the type of community events the new Do It Yourself Fundraising tools were developed to help with.

16 JOIN THE MOVEMENT: wisMS.org

Generation OptiMiStic enjoyed free beer and raised more than $4,000 with their Miller Brewery Tour event.

Challenge Walk MS

Believing in the Possibilities Leads to Record-Setting Success

They came for the challenge.

They came for the celebration.

They came because they believe.

mission, the “family reunion” type atmosphere, and the enthusiastic and welcoming environment. Here’s what a few others had to say: “Those who participate in the weekend are forever linked together in their heart-felt belief that the world will be free of MS someday! So much love for one another - so many positive people pulling together - so much HOPE!”

A record 217 people participated in Challenge Walk MS 2011: 133 walkers, 17 Super Crew members and 67 crew members. Dedicated in their belief that anything “It is a way for all involved to feel that they are, in some is possible to overcome the challenges of multiple small way, contributing to better the lives of their loved sclerosis, they came from 15 states, brought 72 firstones and all who suffer from MS.” time participants and raised $385,000, a 29% increase from 2010! “We really felt like we made a The weekend difference.” began on a picture-perfect “The energy and spirit of the event was day for walking, inspiring.” with participants meandering through “I loved the small close knit feel.” beautiful Peninsula State Park at the start “I have a whole new extended family of their 20-mile route people I love to be around and can’t and enjoying a variety wait to see next year.” of themed rest stops from Egan’s Irish Pub Daniel DeNoble (left) and son Matthew from the to Multiple Screwballs’ team Multiple Screwballs were among the 217 “It was such an emotional experience Chocolate Shoppe. Challenge Walk participants who together raised to go from using a cane when first diagnosed almost two years ago to being Day Two brought $385,000 – a 29% increase from 2010. able to complete the 50 mile walk (and rain and weather even run a bit of it). It was so emotional to cross the finish challenges, but determined walkers and supportive line….It was also such a blessing to meet a few other people volunteers worked together and ultimately were that weekend who have overcome similar (or even greater) rewarded with a beautiful sunset at day’s end. Day Three obstacles.” took participants to a special finish line event. Special congratulations to top team fundraiser Heller’s Multiple Screwballs and top individual fundraiser Connie Plier. Challenge Walk MS is a fully supported, three Plans are in the works for next year’s fifth day, 50-mile walk. And “fully supported” means anniversary event, September 21-23 at the Alpine just that: the logistics of accommodations, meals, Resort in Door County. More than 100 people have entertainment and route assistance are taken care already committed to being part of it. Join them! Visit of so you can focus on fundraising and enjoying ChallengeWalkMSwi.org to register. the walk with family and friends in one of the When asked what they liked about the walk, this most beautiful areas of Wisconsin. year’s participants spoke of the camaraderie, the sense of TOLL FREE NUMBER 1 800 242 3358

Challenge Walk MS 2011 18 JOIN THE MOVEMENT: wisMS.org

Co-Workers Take Up the Challenge After returning to work at the Milwaukee County Sheriff’s Office following Challenge Walk MS, Fran McLaughlin thought there might be a mention during the weekly staff meeting about her taking part in the event. Imagine her surprise when she instead learned that, in her absence, the staff at the agency had raised money to help her reach her goal. Bailiffs raised $400 selling hotdogs. Jail staff generated another $400 with a bake sale. A correctional officer sent her a check for $420 with a note saying he appreciated her dedication to a good cause. The command staff made cash donations for a total of more than $2,000. “I was overwhelmed and speechless,” said the four-year Challenge Walk MS participant of her co-workers’ generosity, which helped her exceed her $5,000, $100-for-every-mile goal. “Aren’t people wonderful?” McLaughlin already registered for the 5th Annual Challenge Walk MS event. Join her by signing up at ChallengeWalkMSwi.org.

TOLL FREE NUMBER 1 800 242 3358

Walk MS: 2012 Wisconsin Chapter Walk 2012

Dollar by dollar, Walk MS is changing lives.

sunday

saturday

sunday

Brown County

Fond du Lac La Crosse Menomonee Falls Wausau

Eau Claire-Chippewa Valley Grafton Fox Cities Manitowoc-Two Rivers Kenosha-Racine Platteville Waukesha

APRIL 22

APRIL 28

APRIL 29

saturday

MAY 5

sunday

MAY 6 Janesville-Rock River Madison Milwaukee Sheboygan

walkMSwisconsin.org or 1-800-242-3358 Thank You 2011 Challenge Walk MS Sponsors

walkMSwisconsin.org or 1-800-242-3358 20 JOIN THE MOVEMENT: wisMS.org

Participate from Home

Learn More About MS with New Midwest Teleconference Series You are Not Alone December 12

The National Multiple Sclerosis SocietyWisconsin Chapter is proud to introduce the Midwest Teleconference Series, an educational program that you can participate in from the comfort of home. The Wisconsin Chapter hosts the Midwest Regional Teleconference on the second Monday of each month at 7 p.m. CST. Each hour-long call features expert information on different aspects of living with multiple sclerosis. There is no charge for these calls, but registration is required. Register online at wisMS.org or by calling 800-344-4867 by the Thursday before each teleconference. If you miss a teleconference, you can listen to the recorded calls by going to wisMS.org. The October teleconference, “Eating for Healthy Living with MS,” is already available. In this call, you’ll learn how to get the best out of the foods you eat, what foods to focus on and what to watch out for. In addition, you’ll learn about food allergies. The November 14 teleconference, “Hot Flash or MS Moment?,” will be available online in the next few weeks.

2012 Making Connections Thru Social Networking January 9 What About Progressive MS February 13 Research: Where are we now, where are we going? March 12 Maximizing Your Physical Therapy for Optimum Benefit April 9 Me, Myself and I: The Art of Being Your Own Care Partner May 14 Give Yourself a Hand: Tools for Everyday Life June 11 The Cycle of MS Symptoms and their Effect on Bowel and Bladder July 9 Spasticity, What’s Under Your Control August 13 MS What a Pain September 10

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 1-800-344-4867 7 a.m. to 6:30 p.m. CST, Monday through Friday TOLL FREE NUMBER 1 800 242 3358

Wisconsin Chapter News and Notes

This is How We Move It

Registration is Open! The 2012 Walk MS dates have been announced and registration is now open! • Register by January 1 for your free Walk MS 2012 bandana. • Register before January 24 and make a self pledge of $24 or more (in celebration of the of Chapter event’s 24th anniversary) for your pairWisconsin Walk 2012 commemorative Walk MS 2012 shoelaces. Both make great accessories for MS Awareness Week in March! Want More Walk MS Wear? Raise $100 or more and get the official Walk MS 2012 T-shirt, too. (Children 9 and under can earn one by raising $25 or more.) Last year more than 12,000 walkers raised more than $1.5 million for MS research, programs and services. Go to walkMSwisconsin.org to register.

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FACING THE COGNITIVE CHALLENGES OF MULTIPLE SCLEROSIS

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Translating the Cognitive Challenges of MS. The second edition of Jeffrey Gingold’s award-winning book “Facing the Cognitive Challenges of MS” is being translated into Polish and will be released in Poland in 2012. Gingold discussed his book in a recent interview with the Polish magazine, “Pozytywny Impuls,” translated as “Possitive Impulse.” COGN F OF M ITIVE CHACING TH Jeffrey continues to donate all ULTIP ALLE E LE SC NGES LERO SIS of his author royalties from the sales of his books directly to MS research and education. Order directly from the publisher and receive a special discount. Visit demoshealth.com and utilize this code: SSGINGOLD30 when you make your purchases. “...a poetic testament to one man’s courage” —CONSORTIUM OF MS CENTERS

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Informative MS Videos Available Online. More than 50 videos are now available at the Society’s MS

Learn Online website, and new productions are added monthly. There are Spanish Learn Online videos, too. Visit nationalMSsociety.org to view the MS Learn Online videos – and sign up for e-mail alerts so you’ll know when a new feature is available for screening. Wisconsin Chapter Calendar of Clinic Visits Representatives of the Wisconsin Chapter regularly visit several of the organization’s official clinics. During these visits, Chapter staff is available to meet confidentially and answer questions plus share informative literature. The current schedule of clinic visits is as follows: • Aurora Baycare MS Clinic, Green Bay: 4th Friday of every month • Marshfield Clinic MS Center, Marshfield: 3rd Tuesday of every month • ProHealth Care Oconomowoc Physician Center, Oconomowoc: 3rd Friday of every month • Regional Multiple Sclerosis Center, St. Luke’s Medical Center, Milwaukee: 1st Monday, 2nd Thursday, 3rd Wednesday, 4th Tuesday of each month • ProHealth Care Neuroscience Center, Waukesha Memorial Hospital, Waukesha: 4th Tuesday of each month • UW Hospital and Clinics Neurology/MS Clinic, Madison: 4th Wednesday of each month Support Groups. There are nearly 50 MS support groups in Wisconsin and new groups sprout up regularly. For a complete listing including meeting dates, please visit wisMS.org or call 800-242-3358. Sign Up for Action Alerts and Read the Blog. Sign up today to receive Action Alert e-mails. These informative updates will keep you connected to the issues that matter most to individuals with MS. E-mail jeremy.otte@nmss.org for details or call 800-242-3358. You can also read the MS Activist blog to keep up with news on federal-level issues at MSactivist.blogspot.com.

MS Connection is a publication of the National Multiple Sclerosis Society-Wisconsin Chapter. For information or to share story ideas, please call 262-369-4421. Editor: Maureen Waslicki, Assistant Editor: Amanda Gasper, Art Director: Amy Malo.

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Wisconsin Chapter Calendar of Events Generation Optimistic Great Dane Pub-Hilldale Madison December 8

MS Awareness Week March 12 - 16

Grafton Saturday, May 5

Midwest Teleconference “You are Not Alone” December 12

Midwest Teleconference “Maximizing Your Physical Therapy for Optimum Benefit” April 9

Manitowoc-Two Rivers Saturday, May 5

Generation Optimistic Mo’s Irish Pub Wauwatosa December 15

Generation Optimistic Vino Cappuccino Brookfield, WI April 19

Janesville-Rock River Sunday, May 6

2012 Midwest Teleconference “Making Connections Thru Social Networking” January 9

Walk MS Brown County Sunday, April 22

MS Snowmobile Tour Carter January 26-29, 2012 Midwest Teleconference “What About Progressive MS” February 13 Generation Optimistic Caribou Coffee Pewaukee February 16

Platteville Saturday, May 5

Madison Sunday, May 6 Milwaukee Sunday, May 6

Fond du Lac Saturday, April 28

Sheboygan Sunday, May 6

La Crosse Saturday, April 28

Midwest Teleconference “Me, Myself and I: The Art of Being Your Own Care Partner” May 14

Menomonee Falls Saturday, April 28 Wausau Saturday, April 28 Eau Claire-Chippewa Valley Sunday, April 29

Birkie Skiers for Cures February 23 - 25

Fox Cities Sunday, April 29

Midwest Teleconference “Research: Where are we now, where are we going?” March 12

Kenosha-Racine Sunday, April 29 Waukesha Sunday, April 29

MS Summit Wisconsin Dells May 18 - 19 MS World Day May 30 Midwest Teleconference “Give Yourself a Hand: Tools for Everday Life” June 11

Generation Optimistic Milwaukee Public Market Milwaukee June 21 On the Move Luncheon Milwaukee June 27 On the Move Luncheon Madison June 28 Midwest Teleconference “The Cycle of MS Symptoms and Their Effect on Bowel and Bladder” July 9 Bike MS: Best Dam Bike Ride August 4 - 5 Midwest Teleconference “Spasticity, What’s Under Your Control” August 13 Generation Optimistic Alterra at the Lake Milwaukee August 16 Midwest Teleconference “MS What a Pain” September 10 Challenge Walk MS September 21 - 23

Please visit the wisMS.org Calendar of Events for the latest listing of Chapter activities and Community Events. ®

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On Your Tax Return …

Make a Mark to Help Create a World Free of MS While doing your 2011 Wisconsin income taxes, please check the box under the “Donations” heading to make a charitable contribution to the National Multiple Sclerosis Society. Importantly, 100 percent of your contribution will support the more than 10,000 Wisconsin residents diagnosed with MS. Your small mark will make a big difference in the movement to create a world free of MS. Contact the National MS Society-Wisconsin Chapter or your tax preparer for information. 262.369.4400 | 800.242.3358 | 1120 James Dr. Suite A, Hartland, WI 53029 | info.wisms@nmss.org | wisms.org Early and ongoing treatment with an FDA-approved therapy can make a difference for people with multiple sclerosis. Learn about your options by talking to your health care professional and contacting the National MS Society at nationalMSsoci ety.org or 1-800-FIGHT-MS (344-4867).