MS Connection - Fall 2009 by National Multiple Sclerosis Society-Wisconsin Chapter

Fall 2009

Vitamin D Wisconsin Researcher Colleen Hayes Explores Benefits for Individuals with MS

Wisconsin Board of Trustees Alyson Zierdt, Chair Retired attorney; Of Counsel, Davis & Kuelthau , S.C. Martin McLaughlin, Past Chair Reinhart Boerner Van Deuren, S.C. Michael Lutze, Vice Chair Ernst & Young Kenneth Minor, Vice Chair Sonic Foundry, Inc. Patricia Ackerman, Treasurer A.O. Smith Corporation Robert Sowinski, Secretary Diversified Insurance Services, Inc. Colleen Kalt, President & CEO National MS Society Wisconsin Chapter Carrie Raymond Bedore Carrie Raymond Bedore, LLC Robert Buhler Open Pantry Albert Elser II Community Advocate Robert Engel M&I Bank

Karen Minor Community Advocate Bruce Olson The Marcus Corporation Shelley Peterman Schwarz Meeting Life’s Challenges David Raysich Plunkett Raysich Architects Patricia Raysich Community Advocate David Rodgers Briggs & Stratton Corporation James Rose Virchow, Krause and Company LLP John Steinhafel Steinhafels Furniture Maureen Steinhafel Community Advocate Jeffrey Steren Steren Management/McDonald’s Robyn Turtenwald Community Advocate

If you or someone you know has MS: Studies show that early and ongoing treatment with an FDA-approved therapy can reduce future disease activity and improve quality of life for many people with multiple sclerosis. Talk to your health care professional or contact the National MS Society at nationalmssociety.org or 1-800-344-4867 to learn about ways to help manage multiple sclerosis and about current research that may one day reveal a cure. The National MS Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The National MS Society assumes no liability for the use of contents of any product or service mentioned. Information provided by the Society is based upon professional advice, published, experience and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. The National MS Society recommends that all questions and information be discussed with a personal physician. The National MS Society is committed to seeing a world free of MS.

JOIN THE MOVEMENT: wisMS.org

What Matters Most It is the cause of your life. And although you didn’t choose it, you’ve embraced it and worked tirelessly for the movement and to create a world free of MS. That’s never been more apparent than when I look at what you’ve accomplished so far this year. You’ve collected pledges, created fundraising events, secured donations, rallied your co-workers and even “tweeted” to generate awareness and support for MS. You relentlessly support the mission of driving research for a cure and addressing the challenges of everyone affected by MS. I am happy to share that because of your actions – and despite an economic environment that nationally has caused the biggest drop in charitable giving in 50 years – the Wisconsin Chapter is staying focused on what matters most. And Connie Plier, left, and Shawn that’s this very important Corbett, right, present Colleen cause of yours. Kalt with a check for their Texas Indeed, because of Hold ‘em community event your support, this year the Wisconsin Chapter donated $1.1 million to MS research. This is the fourth-largest research gift in the Chapter’s 31-year-history. Some of those research dollars, as you’ll read in this issue, have supported the remarkable work of Wisconsin’s own Colleen Hayes, who is studying vitamin D and its potential benefits for individuals with MS. Of course there is still work to do. And that’s why in this issue you’ll also find ways you can continue to demonstrate your ongoing commitment to the cause. For instance you can Make a Mark for MS on your income tax form (providing financial assistance for Wisconsin residents with MS). Or you can register to participate in one of our 14 Walk MS sites (including three new locations in 2010: Menomonee Falls, Manitowoc-Two Rivers and Janesville). And especially at year-end, you can jump start your own legacy by making a gift to the Wisconsin Chapter. With your continued support, we will continue to focus on research and fund services to enhance the quality of life for people living with MS. Because that is what matters most. Sincerely,

Colleen G. Kalt President & CEO

MS CONNECTION: Fall 2009

New Giving Campaign Launches

Golden Circle Committed to the Cause, Care and Cure of MS gathering at the Chenequa The National Multiple Sclerosis Society-Wisconsin Country Club. The event Chapter is pleased to featured a presentation by announce the debut of Dr. John Fleming titled, the Golden Circle, a new “Advancements in MS giving campaign designed Research – What the Future to recognize and honor Holds.” World renown individuals who have a for his novel MS research, special commitment to Fleming is a neurologist and professor at the University of creating a world free of MS. Golden Circle members Wisconsin-Madison, where distinguish themselves by he also serves as the Director donating a single non-event of the Multiple Sclerosis Richard and Susan Wilkey, and Albert and Storm Elser, gift of $1,000 or more. Clinic. Fleming is a recipient The Wisconsin Chapter’s hosted the Wisconsin Chapter’s first Golden Circle event. of numerous National Golden Circle initiative is Multiple Sclerosis Society being lead by volunteer research grants and is a member of the Wisconsin co-chairs Susan Wilkey and Albert Elser II. Wilkey Chapter’s Clinical Advisory Committee. received the National MS Society’s Lifetime Achievement Award in 2008 for her 35 years of service. Elser (Chris) is a long-time member of the Wisconsin Chapter’s Board of Trustees and previously served on the Governor’s Council for People with Disabilities. “Golden Circle members carry on the tradition of the Society’s founder, Sylvia Lawry,” said Wilkey. Years ago Lawry mobilized friends and family members to find answers to the puzzle of MS. Members of the Golden Circle receive unique benefits including but not limited to: • Recognition as a leader in the MS Movement • Unmatched access to breaking research news Dr. John Fleming, right, discusses • Invitations to research briefings and lab tours with research advances with Albert Elser II. internationally renowned scientists • Invitations throughout the year to exclusive local The Golden Circle campaign funds research, scholarships, and national events family programs, financial assistance and information • Opportunity to connect with other Golden Circle services. For more information about the Golden Circle, members who share your passion please call Denise Jendusa at 262-369-7166 or e-mail denise.jendusa@wisMS.org. Wilkey and Elser kicked off the Golden Circle giving campaign on October 4 when they hosted a private TOLL FREE NUMBER 1 800 242 3358

Sledding into his 15th Snowmobile Tour

Rick Romenesko Rides to Create a World Free of MS By Amanda Gasper

Rick Romenesko, a top fundraiser of the Wisconsin living in his own home – drops by to help his mother Chapter’s MS Snowmobile Tour, has raised $177,121 to whenever Rick is out of town for work. help people with multiple sclerosis. Rick’s advice for others living with MS is this: “Keep For the past 14 years, Rick has participated in the it together. Stay together. Work together. Get into MS MS Snowmobile Tour, a three-day outdoor adventure activities like the Snowmobile Tour, Bike MS and Walk in Northern Wisconsin. Riders travel 100- to 150 miles MS. You will find yourself surrounded by people who each day. Last year 132 participants rode in the 26th are in the same boat. They will bring you light.” Today Rick and his friend Dave Schmidt – who first Annual MS Snowmobile Tour and raised more than suggested the two participate in the MS Snowmobile $240,000. Rick’s contribution in 2008 was $31,930 or Tour 14 years ago – are joined by family and friends. just over 13 percent of the total. That made him 2009’s Top Fundraiser – a position he’s held since 2006. Get into MS activities like the Snowmobile Why does Rick ride? He shares that Tour, Bike MS and Walk MS. You will find 22 years ago and shortly after the birth yourself surrounded by people who are in the of their second child, his wife Cheryl was diagnosed with relapsing-remitting MS. same boat. They will bring you light. “She had been feeling sick for quite some - Rick Romenesko time,” shared Rick. Cheryl visited the Rick’s son Ben has been riding for almost as many years doctor and an MRI found MS to be the culprit. Although facing new and sometimes frightening as his dad, and his daughter Danielle joined the tour in challenges, Rick said Cheryl remained positive. The 2008. Dave’s son joined last year’s MS Snowmobile Tour. family – including “You get excited to see all these people son Ben and daughter come together to raise money to fight Danielle – adapted MS,” said Rick. Being around his “once to their life with a year family” is his favorite part of the MS. They reside in event. And the icing on the cake? “We’re Greenville, a small finally getting snow!” Rick said, referring Wisconsin community to the large Wisconsin snowfalls of of less than 10,000 recent years. not far from Appleton. Rick said he is motivated to While MS has had fundraise when he hears updates on MS some say in the things research. The celebration banquet held the family can and at the end of the MS Snowmobile Tour cannot do, Rick said, includes information about where MS “We try to do as research is headed. Cheryl and Rick Romenesko enjoy seeing their What are the keys to Rick’s much as we can.” For “once-a-year family” at the MS Snowmobile Tour. fundraising success? When he first joined instance, Rick and the MS Snowmobile Tour, Rick said he Cheryl enlist their sent out letters to people explaining why the event was children and friends to travel with them on vacations. so important. Now he also holds a community event “People help out, otherwise we wouldn’t be able to go,” each January featuring a local band and sells raffle Rick said. He added, “The kids also help out so I can tickets for more than 100 prizes. meet my job requirements.” Rick is a product specialist at Applied Industrial Technologies. Ben – married and

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Donate to the Holiday Giving Program

Rick is optimistic that fundraising for his 15th MS Snowmobile Tour will be successful.

Dave Schmidt, Rick and Ben Romenesko and John Baumgart take a brief break from the action on the trail. And in the spirit of continuing to do more to support the MS movement, Rick adds, “I would love to put a committee together to share with people from surrounding towns what we do in Greenville,” he said. “I would show them everything we do to raise money. I would love to show them how.” Amanda Gasper is a Life Sciences Communication and Genetics student at the University of Wisconsin-Madison. She was a 2009 summer intern at the Wisconsin Chapter.

Join the 2010 Snowmobile Tour

Meaning in Every Mile

The 27th Annual MS Snowmobile Tour takes place January 28-31, 2010 at the Potawatomi Carter Casino Hotel in Wabeno , WI. The MS Snowmobile Tour is a fully-supported event – meaning while you secure pledges and conquer the trails, the Wisconsin Chapter takes care of everything else (from lodging and meals to free mechanic service and complimentary massages). To register or for more information you can visit wisMS.org or call 800.242.3358 (toll free in WI).

Make the Season Merry for Wisconsin’s MS Families

For the first time in the 21-year history of the Wisconsin Chapter’s Holiday Giving program, there is a waiting list of families hoping to receive financial assistance. Indeed, in just the last five years the number of children benefitting from the Holiday Giving program has increased 136 percent – from 86 in 2003 to 203 in 2008. Considering the economic environment and the overwhelming financial impact of MS on families (estimated at $57,000 annually), these statistics are not surprising. In fact, a recent Harvard study showed that out-of-pocket medical costs for MS are the highest of all the neurological diseases.

In just the last five years the number of children benefitting from the Holiday Giving program has increased 136 percent. Your donation to the Holiday Giving program will help ensure that no parent – already dealing with the impact of what doctors describe as the cruelest disease in neurology – will also experience the heartbreak of being unable to fulfill a child’s holiday wish. With your support, MS will not stand in the way of joyful holiday memories. Make your Holiday Giving donation today. Call 262-369-4400 option 2, or toll free in Wisconsin 800-242-3358. You can also donate online at wisMS.org or mail your gift to: National MS Society-Wisconsin Chapter, 1120 James Drive Suite A, Hartland, WI 53029. TOLL FREE NUMBER 1 800 242 3358

Computer Donations Needed to Meet Demand

IndependenceFirst Provides Free Recycled Computers Among its many services, IndependenceFirst offers free recycled computers to qualified individuals with disabilities living in the Greater Milwaukee Area. Basic computer training, including instruction on using the Internet, is also provided with each computer. More than 100 computers are distributed each year by IndependenceFirst, based on financial need and disability. But because there is currently a six- to 12-month waiting list for refurbished machines, many more computer donations are needed to support the program. Both individual and corporate computers, printers and other computer accessories are accepted. The hard drives of donated machines are scrubbed and the refurbishing process follows all local, state and federal guidelines for recycling computers for reuse. Donated equipment must

be Pentium III processor or better, 128 MB RAM memory or better, 600 MHZ or better and monitors must be 17 inches or larger.

IndependenceFirst Computer Recycling.

The program is available at no cost to qualified residents of Milwaukee, Ozaukee, Washington and Waukesha counties. Call between 9 a.m. and 5 p.m. to request an application and information about receiving a recycled computer. Donations from individuals and companies are gladly accepted 9 a.m. to 4 p.m., Monday through Friday. Volunteers are welcome to assist with cleaning, programming and refurbishing donated computers.For more information call 414-226-8141 or e-mail pcdonations@independencefirst.org. Paid Advertisement

JOIN THE MOVEMENT: wisMS.org

Vitamin D Can

Wisconsin’s World-Renown Vitamin D Researcher Discusses Benefits for Individuals with MS By Amanda Gasper

Prevent MS?

for preventing infections, autoimmune diseases, cancers “There is very good scientific evidence correlating low levels of vitamin D with a high risk of MS and with and cardiovascular diseases,” Dr. Hayes said. “No one high disability in people with MS,” said Colleen Hayes, should be without these health benefits.” PhD, a professor and researcher at the University of According to Dr. Hayes, a study in Finland showed Wisconsin-Madison. that after vitamin D levels decreased during winter, MS Dr. Hayes has studied nutrition and the immune relapse rates increased. system for more than 25 years, and vitamin D and MS In order to study the correlation between vitamin D and MS, Hayes uses the animal model: experimental for almost 20 years. She has many friends, and one autoimmune encephalomyelitis (EAE). The lesions that family member, with MS. Dr. Hayes is a recipient of form and the types of cells that are present in the lesions numerous National Multiple Sclerosis Society grants, in EAE are similar to those found in people with MS, and was notified in October that she would receive another $485,469 award to continue her vitamin D No one should be without these health benefits. studies (see accompanying - Colleen Hayes article). According to Dr. Hayes, “It is not really possible to get the vitamin D one needs according to Dr. Hayes. She added that the clinical from food alone, without UVL exposure or vitamin D disease signs are similar, too. However, researchers know supplements.” In fact, only 10 percent of the vitamin D how the EAE disease process starts in mice but do not that people need comes from foods like fish, eggs and know how MS starts in humans. “It is the best model we have to study the disease mushrooms. A study just released by process,” she said. “The new knowledge we have gained Harvard Medical School through research in the model disease has provided showed at least one in five a strong scientific rational for testing vitamin D and U.S. children ages 1 to 11 calcitriol in MS patients.” doesn’t get enough vitamin Dr. Hayes treated mice with calcitriol, the hormone form of vitamin D that is active in the human body. She D and could be at risk for a found that it can prevent progression of EAE in both variety of health problems male and female mice. including weak bones. The MS patients were treated with calcitriol, as findings add to mounting a prescription drug that must be taken under a evidence about vitamin D physician’s supervision, in a clinical trial. Dr. Hayes deficiency in children, teens said, “It reduced the relapse rate and prevented disease and adults. “Studies have suggested Colleen Hayes has studied progression. However, it did not become a standard vitamin D and MS for 20 years. that vitamin D is beneficial MS therapy due to the risk of raising the serum calcium TOLL FREE NUMBER 1 800 242 3358

levels. We have found a way to avoid this risk, and are working with neurologists to organize a follow-up clinical study.” Dr. Hayes has also treated mice that have EAE with vitamin D and found gender differences in how well vitamin D protects mice from EAE. “We found that vitamin D protected the females but

“In humans, we do not know if vitamin D provides a greater benefit to women than it does to men,” Dr. Hayes said. “If vitamin D proves to have stronger benefits in women than in men, then this new knowledge may help us understand and reverse the female gender bias in MS.” If this is true, men may not be as dependent on vitamin D as women and women may have an increased A simple rule is this, if there is not enough sunlight to need for vitamin D get a tan, then vitamin D3 supplements are needed. during puberty, according - Colleen Hayes to Dr. Hayes. “We will not know not the males from developing EAE. This is in contrast whether raising vitamin D levels can reduce MS relapse to calcitriol, which protects both females and males,” rates and prevent MS disease progression until an Dr. Hayes said. “Our follow-up study showed that intervention study is performed. females need a source of estrogen to obtain the benefits We need to raise the vitamin D levels in MS patients of vitamin D. In other words, estrogen and vitamin D and determine if there are benefits as regards their work together in female rodents to protect them from disease,” Dr. Hayes said. Currently, there are two clinical trials treating MS developing EAE.” According to Dr. Hayes, male mice broke down the patients with vitamin D: One in Canada and another vitamin D-derived calcitriol faster than females. in Finland.

Although vitamin D is notoriously difficult to get in a diet, the following foods can help: 3.5 oz salmon, cooked 360 IU

1 tbsp cod liver oil 1,360 IU 1 cup fortified milk 98 IU

3 oz tuna fish, canned in oil 345 IU

3/4 to 1 cup fortified cereal 40 IU Vitamin content varies by brand.

3.5 oz mackerel, cooked 345 IU 1 whole egg (yolk contains vitamin D) 20 IU

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1.75 oz sardines, canned in oil 345 IU

1 oz Swiss cheese 12 IU 1 tbsp fortified margarine 60 IU

Vitamin D Studies to Continue

Hayes Receives Grant from National MS Society And what are Dr. Hayes recommendations for now? “In the complete absence of UVL exposure, an average adult will need 100 micrograms of vitamin D3 (about 4000 IU) each day,” Dr. Hayes said. “When UVL exposure is limited by low sunlight intensity in the winter months, or by indoor work, or by clothing, or by sunscreen, or by dark skin pigment, you will need to supplement.” Dr. Hayes said she is an advocate of responsible sun exposure as long as the skin does not burn or if there is a history of skin or health problems caused by the sun. “I expose my skin to moderate intensity sunlight without sun block for a period of time that does not cause my skin to burn (turn slightly pinkish), then I apply sunscreen or sit in the shade,” Dr. Hayes said. Older adults need to supplement even if they have good UVL exposure because the ability for the skin to form vitamin D declines with age she said. Dr. Hayes cautioned that there is not enough UVL intensity to form vitamin D from October to April in Wisconsin. “A simple rule is this,” she said. “If there is not enough sunlight to get a tan, then vitamin D3 supplements are needed.” Amanda Gasper is a Life Sciences Communication and Genetics student at the University of Wisconsin-Madison. She was a 2009 summer intern at the Wisconsin Chapter.

You can do your own vitamin D intervention study with your physician, according to Colleen Hayes. Here’s how. 1. Measure your MS symptoms by a timed walking test or a vision test or a cognition test 2. Take vitamin D supplements and measure the serum 25-D levels-the form of vitamin D in the blood 3. Measure your MS symptoms again to see if there is improvement

The National Multiple Sclerosis Society announced in October that Colleen Hayes, PhD, and a professor at the University of Wisconsin-Madison, will receive a three-year $485,469 grant to continue her study of vitamin D and how it may influence multiple sclerosis. This is Dr. Hayes’ fifth award from the National Multiple Sclerosis Society in 10 years, during which time she has received $1.8 million. MS researchers have wondered why MS occurs less often in regions of the world where exposure to sunlight is high. There is evidence that vitamin D, which is made by cells in the skin in response to sunlight, and calcitriol – a hormone derived from vitamin D – may suppress the immune response involved in MS. In her new research project, Dr. Hayes will study how vitamin D may influence MS-like disease to shed light on possible ways to prevent and treat human MS. In previous research, Dr. Hayes found that a pulse dose of calcitriol combined with vitamin D supplements induced a long-lasting remission of experimental autoimmune encephalomyelitis (EAE), a disease similar to MS, in lab mice. For the new project, Dr. Hayes has assembled a group of collaborators from Wisconsin, Missouri, Oregon, Ohio and Canada to determine how calcitriol suppresses autoimmune activity in EAE. Their work will provide important information about the activity of vitamin D and calcitriol and its interactions with the immune system and inflammation. The new insights gleaned from this work will help to inform investigators who are planning future clinical trials to determine whether vitamin D and/or calcitriol can benefit people with MS or prevent new cases of the disease.

MS Connection is a publication of the National Multiple Sclerosis Society-Wisconsin Chapter. For information or to share story ideas, please call 262-369-4431. Editor: Cindy Yomantas, Art Director: Amy Malo

TOLL FREE NUMBER 1 800 242 3358

MY CAUSE

MY CURE

<< Lift this page

My Cause. My Cure. My Commitment. Regardless of how it got there; that mean, myelineating disease called multiple sclerosis is part of your life. And while this isn’t necessarily a situation when there is comfort in numbers (Wisconsin has one of the highest incidence rates of MS in the U.S.), there is power in numbers.

MS Factoid:

Last year, Wisconsin Chapter programs and services were utilized by 12,992 residents. Think about it. There are more than 10,000* individuals diagnosed with MS and living in Wisconsin. Add to that the number of people who care about someone who has MS – family members, friends and co-workers, to name a few. Conservatively speaking, that could bring the total number of Wisconsin residents who have a connection to MS to 70,000. That’s a big and powerful number. How big? Think of it this way: If you gathered together all the people in Wisconsin who have a connection to MS, you’d just about sell-out Lambeau Field. Imagine that (and imagine all those fans wearing MS orange)! The fact is: MS is part of your life, but you are not alone. You are part of a community that is estimated to be more than 70,000 strong. Together you can do more than imagine Wisconsin without MS. You can make it happen. One way to do that is to join the movement. What does that mean? • It means connecting with each other and with the National Multiple Sclerosis Society-Wisconsin Chapter. • It means not waiting for someone else to make the first move. • It means believing you can make a difference. • It means doing everything you can to drive research and support those affected by MS.

More than anything, it means leveraging your power and making a commitment to a world free of MS. You’ve done it before. Look at the Act 71 legislation that resulted in the creation of the Make a Mark for MS income tax check-off program. You can do it again. And to help, we’ve created a roadmap of fundamental areas to focus your attention and your actions. Working together you’ll create a Wisconsin movement to be reckoned with. Working together you’ll create a world free of MS. Everyone pays taxes. Everyone can Make a Mark for MS. Don’t submit your 2009 income tax forms (and don’t let your friends and family members submit theirs), without making a mark for MS (see the Donations page of your income tax form). Funds generated through Wisconsin’s Make a Mark for MS income tax check-off program allow individuals to maintain their independence and connectivity within the community. One hundred percent of your Make a Mark for MS contribution goes to aid Wisconsin residents with MS.

MS Factoid:

In 2009, the Wisconsin Chapter made the fourth-largest contribution to MS research in its 31-year history: $1.1 million. Always Ask About Matching Gifts. One for you: one for me. One for you: two for me. That’s the beauty of a matching gift program. You make a donation to the Wisconsin Chapter and your employer matches or sometimes even doubles your gift. You’ll find a list of several Wisconsin companies that have matching gift programs under “Donate” at wisMS.org. But it’s also a good idea to ask your company if they match gifts.

*This represents individuals who have connected with the National Multiple Sclerosis Society-Wisconsin Chapter. If you have MS, please call 262-369-4400 or toll free in Wisconsin 800-242-3358, or e-mail info@wisMS.org and connect to valuable programs, services, networks and support.

Wake Up Your Workplace and Secure Donations. Workplace giving is a painless way to contribute – especially when you use automatic payroll deductions. All gifts made through workplace giving campaigns are tax deductible. The Wisconsin Chapter proudly partners with Community Health Charities Wisconsin, the largest workplace giving program devoted solely to health issues. To start a campaign at your workplace, call 800-783-0242. Public sector and government employees can support the Wisconsin Chapter through the Combined Federal Campaign of Greater Wisconsin by selecting the designated code number: 36427. United Way contributions or payroll deductions can be directed to the Wisconsin Chapter. Ask your company’s United Way campaign coordinator for a Donor Designation form and write in: National Multiple Sclerosis Society-Wisconsin Chapter. Celebrate MS Awareness Week in March. If ever you are going to do it, MS Awareness Week, March 8-14, is the time to tell everyone you know about MS. Let them know that Wisconsin has one of the highest incidence rates of MS in the U.S., with 1-in-500 affected. Tell them that some of the most exciting MS research in the world is happening right here in Wisconsin – and that the National Multiple Sclerosis Society is currently investing $5.6 million to fund six exciting Wisconsin-based MS research projects. Share with them that because of the unpredictability of its symptoms, doctors call MS the cruelest of the neurological diseases. And make sure they know that a recent Harvard study identified MS as the most expensive of the neurological diseases – costing each person diagnosed with the disease, on average, $57,000 per year. Share this information and then reveal your personal story. Whether you have MS or love someone who has MS, you are a face of MS and your story will make a difference. Your story will make MS real.

MY COMM

to a world f

MITMENT

d free of MS

Remember: Orange is the New Pink MS Awareness Week is also a great time to wear orange. Actually whenever the urge strikes, wear your wild wonderful orange wardrobe. Why? Because orange is the color of the National MS Society. Orange is the new pink. Because You Can, Raise $100 for MS. Focus your creative energy on raising a special gift of at least $100 for MS. Pull together your friends, school classmates, scouts, Facebook pals and others to devise a fun and fantastic way to collect $100 or more for MS. We have tools and staff to help. Visit wisMS.org or call 262-369-4400 option 2. Request a Speaker from the MS Chapter. Need help spreading the word about MS? Just give us a jingle. We’ll visit your workplace or place of worship. We’ll talk to your child’s school or scout group, or make a presentation to your Rotary Club. If your employer hosts a health fair, we’ll be there. To secure a Wisconsin Chapter speaker, call Kim Kinner at 262-369-4421 or e-mail kim.kinner@wisMS.org.

MS Factoid:

Of the 10,000-plus Wisconsin residents diagnosed with MS, more than twice as many women as men have the disease. Sign Up to Receive Action Alerts. If you take just one action, sign up to receive Action Alerts. It’s that important. Because when you sign up to receive Action Alerts from the National MS Society, you make the movement matter. You let politicians in Madison and Washington D.C. know that you have a voice and that you plan to use it to create a world free of MS. You become an MS activist. Currently there are just over 2,000 Wisconsin residents registered to receive Action Alerts. If you are ready to be a catalyst for change, contact Georgia Maxwell at

the Wisconsin Chapter by calling 262-369-7170 or e-mailing georgia.maxwell@wisMS.org.

MS Factoid:

Wisconsin has one of the highest incidence rates of MS in the U.S. Create Your Own MS Fundraising Event. Officially they’re called Community Events. But in reality these grassroots fundraisers are the most fun you can have raising funds for MS. What can you do to raise money for MS? Let us count the ways. Oh wait, they’re endless! Put your creativity to work for MS. The Wisconsin Chapter can help – and even connect you with some volunteer experts to teach you the ropes. Contact Jennifer Bremberger at 262-369-4435 or e-mail jennifer.bremberger@wisMS.org.

Join a Wisconsin Chapter Fundraising Event Whether you walk, ride or slice through the snow; your participation in official National MS Society events produces revenue to support vital MS research. We guarantee: The events will challenge you. And the experience will change you. Check the Calendar of Events on Page 23 for a list of events and dates. Jump Start Your Own Legacy. Everyone will be re-visiting their investment strategy at year-end, which means everyone has the opportunity to consider a gift to the Wisconsin Chapter. You can make an outright gift of cash, stock or securities. You can name the Wisconsin Chapter in your will. You can create a charitable trust or charitable gift annuity. You can do many, many good things to ensure your actions speak for your heart – now and for the years to come. For assistance, contact Denise Jendusa at 262-369-7166 or e-mail denise.jendusa@wisMS.org.

YES, this is my cause. Here is my commitment Please accept my gift to help men, women and children with MS.

q $2,500* q $1,000* q $500 q $250 q $100 q $50 q Surprise Us! $______________

MAIL TO: National MS Society - Wisconsin Chapter, 1120 James Drive, Suite A, Hartland, WI 53029 q Enclosed is my check payable to the National MS Society - Wisconsin Chapter q Please bill my: q Visa q MasterCard q Discover

in the amount of: $ ________________________

Cardholder Name (as it appears on card):_______________________________________________________ Card #: _________________________________________________________ Exp. Date: ______/_______ Signature: _______________________________________________________________________________ q I would like more information about making a gift through my estate plan. q My employer is a matching gift company and I have enclosed the form with my gift.

MAKE A GIFT NOW. Give online at wisMS.org. Call toll free 800-242-3358 or 262-369-4400

*Includes Golden Circle membership

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16 JOIN THE MOVEMENT: wisMS.org

Deadline to Apply is January 15

2010 MS College Scholarship Applications Now Available MS shouldn’t sidetrack plans for college; which is why the National Multiple Sclerosis Society established the MS College Scholarship program in 2003. Last year the Wisconsin Chapter presented 30 scholars with $45,000 in financial assistance. The MS College Scholarship program provides financial support for people with MS or children who have a parent with MS. Applicants must be planning to attend an accredited post-secondary school for the first time and enroll in at least six credit hours per semester in coursework leading to a degree, license or certificate. Scholars are selected on the basis of financial need,

academic performance, compelling personal or family circumstances and a personal essay about the impact of MS on the applicant’s life. Awards typically range from $1,000 to $3,000. The deadline for submitting an application is January 15, 2010. To apply, please visit www. nationalMSsociety.org/scholarship. If you have questions about the program – or would like to make a donation to the MS College Scholarship program, please contact Meghan Schnabl at meghan.schnabl@wisMS.org or phone 262-369-4420.

Program Benefits Research

Birkie Skiers for Cures Partners with Society for 2nd Year The National MS Society-Wisconsin Chapter and the American Birkebeiner will celebrate a second year of partnership February 25-27, 2010. The “Birkie” is North America’s largest Nordic ski event. Held in Hayward, Wisconsin, the event was recently recognized by National Geographic Adventure magazine as one of America’s 50 best adventures. The Birkie Skiers for Cures program encourages race participants and fans to raise pledges to benefit MS research. Last year’s MS fundraising effort was the most successful in Birkie history, generating more than $110,000. More details are available at birkie.com or wisMS.org.

By collecting pledges and supporting research, Birkie skiers and fans can make a difference in the lives of more than 10,000 Wisconsin residents living with MS.

Grant Support Powers MS Programs, Events The Wisconsin Chapter extends its sincere gratitude to the following contributors for grants awarded June 1, 2009 through September 30, 2009. Your foundation can join the movement with a contribution by calling Cindy Yomantas at 262-369-4431. • $2,500 from the National Association of Theater Owners for the MS Luncheon. • $2,500 from Teva Neuroscience to support special family networking programs. • $5,000 from The Jerome and Dorothy Holz Family Foundation for the MS College Scholarship program. • $2,500 from Biogen Idec to support special family networking programs. • $500 from the Pukall Lumber Foundation for general support. • $5,000 from EMD Serono for educational programming. TOLL FREE NUMBER 1 800 242 3358

Pharmaceutical Companies Provide Financial Assistance to Qualified Clients Purchasing Multiple Sclerosis Medication There is no denying that the economic recession has made it more difficult for families already struggling to cope with the financial impact of multiple sclerosis. With that in mind, several pharmaceutical companies offer financial assistance programs to qualified individuals for the purchase of MS drug therapies. Benefits may include reduced or zero co-pays. Youâ&#x20AC;&#x2122;ll find several programs highlighted below. Please note: Because pharmaceutical companies offer these programs, financial assistance for medication purchases is not available through the Wisconsin Chapter. Pharmaceutical Company

Drug Therapy

Financial Assistance Program Name

Web Site

Phone

Bayer

Betaseron

BETAPLUS

betaseron.com

800-788-1467

Biogen Idec

Tysabri Avonex

MS Active Source

msactivesource.com

800-456-2255

EMD Serono

Rebif

MS Lifelines

mslifelines.com

877-447-3243

TEVA

Copaxone

Shared Solutions

copaxone.com/supportservices

800-887-8100

Thank You Challenge Walk MS Sponsors

18 JOIN THE MOVEMENT: wisMS.org

Challenge Walk MS Held in Breathtaking Door County

2nd Annual Event Attracts Walkers from Across the United States As far as Donna Constant is concerned, Challenge Walk MS 2009 delivered everything it promised – and then some. Held September 18-20 in breathtaking Door County, Challenge Walk MS is billed as a three-day, 50-mile walk that will “challenge you” and “change you.” Constant was part of a 10-member, multi-state team that met on Facebook and supported her best friend, Kim Bertram. The team exceeded their $15,000 goal, collecting pledges from all 50 states and six countries. After the walk Constant shared on her blog, “I flew away from Wisconsin with a new purpose in life and a heart full of love for nine other women that I am convinced will always be part of my life. This oh-so-special weekend bound us together tighter than any of us could have imagined.” The 2009 Challenge Walk MS attracted 86 walkers, 16 super crew (participants who pledge and receive all the event amenities but have chosen to volunteer instead of walk) and 59 crew volunteers. Among the walkers was National Multiple Sclerosis Society CEO, Joyce Nelson. She and her husband, John Hansell, participated in six Challenge Walk MS events across the country – including Door County. Next year’s Door County Challenge Walk MS takes place September 24-26. To register or for more information visit wisMS.org, e-mail dawn.thaves@wisMS.org or call 800-242-3358.

Joyce David and her daughter, Carrie Pouwels, took a break from Challenge Walk MS to enjoy the beauty of Door County.

The 50-mile Door County Challenge Walk MS ended with a commemorative photo on the Washington Island ferry. TOLL FREE NUMBER 1 800 242 3358

Thank You Bike MS: TOYOTA Best Dam Bike Ride Sponsors Title Sponsor

Presented by your Milwaukee and Madison Area TOYOTA Dealers: Wilde • Smart • Russ Darrow Ruda • Kenosha • Jon Lancaster Jack Safro • Hesser • Heiser • Gentile • Don Jacobs • Andrew

Partnering Sponsors

Champion Sponsors

Inspiration Sponsors

Community Sponsors

Encouraging Sponsors CNA Foundation • Ernst & Young • First Business Bank • TDS Telecom

Motivational Sponsors Baker Tilly • Gentiva Health Services • Nuto Farm Supply Inc • R&R Insurance • Turke Family Medicine • WE Energies

In-Kind Sponsors Arctic Glacier • Culligan • Miller 64 • Rockford Silk Screen • Tony Machi Fruits

Media Sponsors NBC 15, Madison • Fox 6, Milwaukee • 105.1, Charlie FM

Bike Shop Sponsors Wheel & Sprocket • Trek Bicycle Store • Rainbow Jersey Bicycles • Machinery Row Bicycles • Erik’s Bike Shop • Crank Daddy’s

20 JOIN THE MOVEMENT: wisMS.org

More Than $1.5 Million Generated for MS

Cyclists Battle Back Roads and Wind to Complete Bike MS Despite gusts of wind that were so strong one cyclist laughingly remarked he had to pedal just to go downhill, the 26th Annual Bike MS: Best Dam Bike Ride attracted more than 1,500 participants. Held August 1-2, the event runs from Pewaukee to Whitewater to Madison and features routes of 62.5-, 75- and 100 miles. Sponsored by Toyota, this year’s event brought in more than $1.5 million to drive research for a cure and address the challenges of Wisconsin’s more than 10,000 residents diagnosed with MS. The 27th Annual Bike MS: Best Dam Bike Ride is slated for August 7-8, 2010. Register online at wisMS.org.

1. Riders caught a glimpse of the Capitol as they rolled to the finish. 2. Three generations of Engels – grandson Max, son Jonathan and father Bob – celebrate the completion of Bike MS. 3. Throughout the route, this year’s cyclists consistently gave Bike MS a big thumb’s up. 4. Chuck Scherwinski grabbed the yellow jersey and was named the Number One fundraiser. 5. A Finish Line tradition, individuals with MS signed rider bibs.

TOLL FREE NUMBER 1 800 242 3358

Wisconsin Chapter News and Notes

This is How We Move It

Flu Shot Guidelines for People with MS. While medical decisions should always be discussed with your personal physician, the National Multiple Sclerosis Society has issued guidelines concerning flu shots, including the H1N1 vaccine. Visit nationalmssociety.org for details. A Star is Born. Shelley Peterman Schwarz is featured in a series of webcasts found at nationalmssociety.org. Titled, “Everyday Tips When Living with Primary-Progressive Multiple Sclerosis,” the webcasts are five minutes each. Topics covered include Your Kitchen and Cooking, Your Bathroom and Grooming, Your Bedroom and Dressing, and Staying Connected. You’ll find a link to the webcasts at wisMS.org.

respond to your needs. Call toll-free 1-800-242-3358, Option 1, 7 a.m. to 6:30 p.m. Monday through Friday. Cognition Seminar Plays to Packed House in Green Bay. Nearly 100 attended Jeffrey Gingold’s popular cognition seminar in Green Bay in August.

Early arrivals at the cognition seminar held August 19 in Green Bay and supported by an educational grant from EMD Serono include (back row from left): Annette Goza, Kalee DeBeck, Pete Kelly, Kristina L’Empereur, Dan Waters, Jeffrey Gingold and Tim Meydam; (front row from left): Erica Hartsough (kneeling), Tim Mickelson, Marie Franklin, Jeff Goza, Terri Gingold and Janet Meydam.

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 answer questions and share informative literature. The current schedule of clinic visits is as follows: • Aurora Baycare: 4th Friday of every month • Marshfield Clinic MS Center: 3rd Tuesday of each month. • MS Regional Clinic at St. Luke’s Medical Center: 2nd Wednesday and 4th Monday of each month. • ProHealth Care Neuroscience Center Waukesha Memorial Hospital: 4th Tuesday of each month • University of Wisconsin Hospital and Clinics Neurology/MS Clinic: 4th Wednesday of each month. Information and Referral Service – Your MS Navigator. Finding answers and making decisions relies on having the right information at the right time. Our MS Navigators are skilled professionals equipped to

22 JOIN THE MOVEMENT: wisMS.org

The program was underwritten by an educational grant from EMD-Serono and was also presented in Madison in September. New La Crosse MS Circle of Hope Support Group Launched. Facilitator Pam Arttus invites La Crossearea residents to join the group to socialize and hear educational presentations. Meetings take place the first Monday of each month and are held at the First Congregational Church at 6:30 p.m. For more information call 608-792-6605. Join the MS Action Network. Close to 2,000 Wisconsin residents have joined the MS Action Network. Are you ready to lend your voice, your story, your action and be a catalyst for change? Take the first step. E-mail georgia.maxwell@wisMS. org or call 262-369-7170 to sign up. You’ll receive informative Action Alerts from the National Multiple

Sclerosis Society to keep you up-to-date on important debates and policies affecting individuals with MS.

Wisconsin Chapter

In-Kind Contributions Welcomed. Every budget-relieving contribution made to the Wisconsin Chapter provides increased opportunities to channel funds into MS research and client programming. Retail gift cards allow the greatest flexibility to purchase items that will have the most impact.

MS Snowmobile Tour January 28-31

Circle of Hope Support Groups. Wisconsin has more than 50 support groups and new groups sprout up regularly – most recently in La Crosse. For a complete listing including meeting dates, please visit wisMS.org or call 1-800-242-3358, Option 2. Sign Up for the Pick ‘n Save We Care Program. A percentage of your grocery purchases will be donated to the Wisconsin Chapter by Roundy’s when you join the We Care program at any of the company’s participating Pick ‘n Save, Copps or Rainbow stores. The Wisconsin Chapter number is 532300. MSWorld Provides Social Networking for Individuals Affected by MS. Visit MSWorld.org to participate in chats and message boards. MSWorld is managed by volunteers who also are diagnosed with MS. The National MS Society is a collaborative partner of the site. MS Awareness Week 2010. Mark your calendars and start shopping for new orange outfits. MS Awareness Week 2010 will be celebrated March 8 to 14, 2010. Fan Us on Facebook. Visit the Wisconsin Chapter’s new Facebook page and stay connected with Wisconsin’s MS community. What’s on Your Mind? IndependenceFirst wants to know. Milwaukee-area residents are invited to participate in a survey to help IndependenceFirst craft a three-year strategic plan. Individuals, caregivers and family members of someone with a disability are encouraged to take the online survey at www.tinyurl.com/independencefirst.

Calendar of Events

Birkie Skiers for Cures February 25-27 MS Awareness Week March 8-14 Legislative Affairs Day March 10 Wisconsin Chapter Board Meeting March 23

Walk MS: Menomonee Falls April 17

Walk MS: Brown County, Racine/Kenosha April 18

Walk MS: Manitowoc - Two Rivers, Sheboygan County, North Central Wisconsin April 24 Walk MS: Eau Claire - Chippewa Valley, Fond du Lac County, Fox Cities, La Crosse - Seven Rivers, Waukesha County April 25

Walk MS: Madison, Summerfest Grounds, Rock River May 2 MS Summit Wisconsin Dells May 21-22

MS Luncheon Milwaukee June 15 MS Luncheon Madison June 16 Wisconsin Chapter Board Meeting June 22

Bike MS: Best Dam Bike Ride August 7-8 Challenge Walk MS September 24-26 Wisconsin Chapter Board Meeting September 28

MS Day Milwaukee County Zoo Fall

TOLL FREE NUMBER 1 800 242 3358

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PAID

1120 James Drive Suite A Hartland, WI 53029

Milwaukee, WI 53202 Permit No. 2868

Mailing Label Changes Please check the appropriate box below, correct the label and return to the Wisconsin Chapter. Name change or misspelled Address change Remove from mailing list Received more than one copy Please send me my MS Connection via e-mail. My e-mail address is: __________________________________________

wisMS.org • Toll Free 1 800 242 3358 • 262 369 4400 Putting the Shoe on the Other Foot

MS Moms Collect Donations for Children of Waukesha Memorial Patients The Moms MS Circle of Hope self-help group Victoria Dornburg shared that she visits area rummage started in June 2007 in Waukesha County. Since that sales and leaves a card requesting that “leftovers” be time, the number of regular participants has increased donated to the group’s hospital initiative. On Friday, September 4, five Moms members to 15 – including a few guests of the opposite sex, and their eight children presented the goodies to the otherwise known as dads. During a recent meeting, facilitator Lisa Krisik neurology unit at Waukesha Memorial Hospital. The shared details about a community outreach program the gifts can be utilized by the children while they are Moms had just launched. visiting the hospital – or taken home to enjoy. In just “Our children often the first month, 23 coloring see us receiving help from books had made their way others,” said Krisik. “We into happy hands. “This is an ongoing wanted to do something to program,” said Krisik, “and show our children that even we welcome donations.” though we have MS, we The Moms MS Circle can help others, too.” From of Hope self-help group that heartfelt sentiment, an meets the first Wednesday initiative to provide children of each month at 3:30 p.m. of neurology patients at St. Dominic Church, at Waukesha Memorial 18255 West Capitol Drive Hospital with “comfort gifts” in Brookfield. Childcare is was born. Over the course provided. For details about of several weeks the Moms Several Moms MS Circle of Hope self-help group the group – or to make a and their families collected members helped deliver donations to Waukesha coloring books, beanie Memorial Hospital’s neurology unit. Back row from left: donation to the hospital outreach program – please babies, stuffed animals, Sally Ketter, Anne Angeli and Lisa Krisik. Front row contact Lisa at 414-336-2437 hand-knitted prayer shawls from left: Donna Esser and Victoria Dornburg. or lisalu122@yahoo.com. and books. Moms’ member Not pictured: Tammy Berghauer and Lyndi Mirkes.