MS Connection - Fall 2009

Fall 2009

Vitamin DWisconsin Researcher Colleen Hayes

Explores Benefits for Individuals with MS

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 that’s this very important cause of yours. Indeed, because of 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. KaltPresident & CEO

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.

©2010 National Multiple Sclerosis Society - Wisconsin Chapter

2 JOIN THE MOVEMENT: wisMS.org MS CONNECTION: Fall 2009

Alyson Zierdt, ChairRetired attorney; Of Counsel, Davis & Kuelthau , S.C. Martin McLaughlin, Past ChairReinhart Boerner Van Deuren, S.C.

Michael Lutze, Vice ChairErnst & Young Kenneth Minor, Vice ChairSonic Foundry, Inc.

Patricia Ackerman, TreasurerA.O. Smith Corporation

Robert Sowinski, SecretaryDiversified Insurance Services, Inc.

Colleen Kalt, President & CEONational MS Society - Wisconsin Chapter Carrie Raymond BedoreCarrie Raymond Bedore, LLC

Robert Buhler Open Pantry Albert Elser IICommunity Advocate Robert EngelM&I Bank

Karen MinorCommunity Advocate Bruce OlsonThe Marcus Corporation Shelley Peterman SchwarzMeeting Life’s Challenges

David RaysichPlunkett Raysich Architects

Patricia RaysichCommunity Advocate

David RodgersBriggs & Stratton Corporation

James RoseVirchow, Krause and Company LLP

John SteinhafelSteinhafels Furniture

Maureen SteinhafelCommunity Advocate

Jeffrey SterenSteren Management/McDonald’s

Robyn TurtenwaldCommunity Advocate

Wisconsin Board of Trustees What Matters Most

Connie Plier, left, and Shawn Corbett, right, present Colleen Kalt with a check for their Texas Hold ‘em community event

3TOLL FREE NUMBER 1 800 242 3358

New Giving Campaign LaunchesGolden Circle Committed to the Cause, Care and Cure of MS

The National Multiple Sclerosis Society-Wisconsin Chapter is pleased to announce the debut of the Golden Circle, a new giving campaign designed to recognize and honor individuals who have a special commitment to creating a world free of MS. Golden Circle members distinguish themselves by donating a single non-event gift of $1,000 or more. The Wisconsin Chapter’s Golden Circle initiative is being lead by volunteer co-chairs Susan Wilkey and Albert Elser II. Wilkey

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: •RecognitionasaleaderintheMSMovement •Unmatchedaccesstobreakingresearchnews •Invitationstoresearchbriefingsandlabtourswith internationally renowned scientists •Invitationsthroughouttheyeartoexclusivelocal and national events •OpportunitytoconnectwithotherGoldenCircle members who share your passion

Wilkey and Elser kicked off the Golden Circle giving campaign on October 4 when they hosted a private

gathering at the Chenequa Country Club. The event featured a presentation by Dr. John Fleming titled, “Advancements in MS Research – What the Future Holds.” World renown for his novel MS research, Fleming is a neurologist and professorattheUniversityofWisconsin-Madison, where he also serves as the Director of the Multiple Sclerosis Clinic. Fleming is a recipient of numerous National Multiple Sclerosis Society

research grants and is a member of the Wisconsin Chapter’s Clinical Advisory Committee.

The Golden Circle campaign funds research, scholarships, family programs, financial assistance and information services. For more information about the Golden Circle, please call Denise Jendusa at 262-369-7166 or e-mail [email protected].

Dr. John Fleming, right, discusses research advances with Albert Elser II.

Richard and Susan Wilkey, and Albert and Storm Elser, hosted the Wisconsin Chapter’s first Golden Circle event.

4 JOIN THE MOVEMENT: wisMS.org

Rick Romenesko, a top fundraiser of the Wisconsin Chapter’s MS Snowmobile Tour, has raised $177,121 to help people with multiple sclerosis. For the past 14 years, Rick has participated in the MS Snowmobile Tour, a three-day outdoor adventure in Northern Wisconsin. Riders travel 100- to 150 miles each day. Last year 132 participants rode in the 26th Annual MS Snowmobile Tour and raised more than $240,000. Rick’s contribution in 2008 was $31,930 or just over 13 percent of the total. That made him 2009’s Top Fundraiser – a position he’s held since 2006. Why does Rick ride? He shares that 22 years ago and shortly after the birth of their second child, his wife Cheryl was diagnosed with relapsing-remitting MS. “She had been feeling sick for quite some time,” shared Rick. Cheryl visited the doctor and an MRI found MS to be the culprit. Although facing new and sometimes frightening challenges, Rick said Cheryl remained positive. The family – including son Ben and daughter Danielle – adapted to their life with MS. They reside in Greenville, a small Wisconsin community of less than 10,000 not far from Appleton. While MS has had some say in the things the family can and cannot do, Rick said, “We try to do as much as we can.” For instance, Rick and Cheryl enlist their children and friends to travel with them on vacations. “People help out, otherwise we wouldn’t be able to go,” Rick said. He added, “The kids also help out so I can meet my job requirements.” Rick is a product specialist at Applied Industrial Technologies. Ben – married and

living in his own home – drops by to help his mother whenever Rick is out of town for work. Rick’s advice for others living with MS is this: “Keep it together. Stay together. Work together. Get into MS activities like the Snowmobile Tour, Bike MS and Walk MS. You will find yourself surrounded by people who are in the same boat. They will bring you light.” Today Rick and his friend Dave Schmidt – who first suggested the two participate in the MS Snowmobile Tour 14 years ago – are joined by family and friends.

Rick’s son Ben has been riding for almost as many years as his dad, and his daughter Danielle joined the tour in 2008. Dave’s son joined last year’s MS Snowmobile Tour.

“You get excited to see all these people come together to raise money to fight MS,” said Rick. Being around his “once a year family” is his favorite part of the event. And the icing on the cake? “We’re finally getting snow!” Rick said, referring to the large Wisconsin snowfalls of recent years. Rick said he is motivated to fundraise when he hears updates on MS research. The celebration banquet held at the end of the MS Snowmobile Tour includes information about where MS research is headed. What are the keys to Rick’s fundraising success? When he first joined the MS Snowmobile Tour, Rick said he

sent out letters to people explaining why the event was so important. Now he also holds a community event each January featuring a local band and sells raffle tickets for more than 100 prizes.

Sledding into his 15th Snowmobile TourRick Romenesko Rides to Create a World Free of MS By Amanda Gasper

Get into MS activities like the Snowmobile Tour, Bike MS and Walk MS. You will find yourself surrounded by people who are in the same boat. They will bring you light. - Rick Romenesko

Cheryl and Rick Romenesko enjoy seeing their “once-a-year family” at the MS Snowmobile Tour.


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

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.

The27thAnnualMSSnowmobileTourtakesplaceJanuary28-31,2010atthePotawatomiCarterCasinoHotelinWabeno,WI. TheMSSnowmobileTourisafully-supportedevent–meaningwhileyousecurepledgesandconquerthetrails,theWisconsinChaptertakescareofeverythingelse(fromlodgingandmealstofreemechanicserviceandcomplimentarymassages).ToregisterorformoreinformationyoucanvisitwisMS.orgorcall800.242.3358(tollfreeinWI).

Join the 2010 Snowmobile TourMeaning in Every Mile

Dave Schmidt, Rick and Ben Romenesko and John Baumgart take a brief break from the action on the trail.

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.

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.

Donate to the Holiday Giving ProgramMake the Season Merry for Wisconsin’s MS Families

In just the last five years the number of children benefitting from the Holiday Giving program has increased 136 percent.


Computer Donations Needed to Meet DemandIndependenceFirst Provides Free Recycled Computers

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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. TheprogramisavailableatnocosttoqualifiedresidentsofMilwaukee,Ozaukee,WashingtonandWaukeshacounties.Callbetween9a.m.and5p.m.torequestanapplicationandinformationaboutreceivingarecycledcomputer.Donationsfromindividualsandcompaniesaregladlyaccepted9a.m.to4p.m.,MondaythroughFriday.Volunteersarewelcometoassistwithcleaning,programmingandrefurbishingdonatedcomputers.Formoreinformationcall414-226-8141ore-mailpcdonations@independencefirst.org.


“There is very good scientific evidence correlating low levels of vitamin D with a high risk of MS and with high disability in people with MS,” said Colleen Hayes, PhD,aprofessorandresearcherattheUniversityofWisconsin-Madison. Dr. Hayes has studied nutrition and the immune system for more than 25 years, and vitamin D and MS for almost 20 years. She has many friends, and one family member, with MS. Dr. Hayes is a recipient of numerous National Multiple Sclerosis Society grants, and was notified in October that she would receive another $485,469 award to continue her vitamin D studies (see accompanying article). According to Dr. Hayes, “It is not really possible to get the vitamin D one needs fromfoodalone,withoutUVLexposureorvitaminDsupplements.” In fact, only 10 percent of the vitamin D that people need comes from foods like fish, eggs and mushrooms. A study just released by Harvard Medical School showed at least one in five U.S.childrenages1to11doesn’t get enough vitamin D and could be at risk for a variety of health problems including weak bones. The findings add to mounting evidence about vitamin D deficiency in children, teens and adults. “Studies have suggested that vitamin D is beneficial

for preventing infections, autoimmune diseases, cancers and cardiovascular diseases,” Dr. Hayes said. “No one should be without these health benefits.” According to Dr. Hayes, a study in Finland showed that after vitamin D levels decreased during winter, MS relapse rates increased. In order to study the correlation between vitamin D and MS, Hayes uses the animal model: experimental autoimmune encephalomyelitis (EAE). The lesions that form and the types of cells that are present in the lesions in EAE are similar to those found in people with MS,

according to Dr. Hayes. She added that the clinical disease signs are similar, too. However, researchers know how the EAE disease process starts in mice but do not know how MS starts in humans. “It is the best model we have to study the disease process,” she said. “The new knowledge we have gained through research in the model disease has provided a strong scientific rational for testing vitamin D and calcitriol in MS patients.” Dr. Hayes treated mice with calcitriol, the hormone form of vitamin D that is active in the human body. She found that it can prevent progression of EAE in both male and female mice. MS patients were treated with calcitriol, as a prescription drug that must be taken under a physician’s supervision, in a clinical trial. Dr. Hayes said, “It reduced the relapse rate and prevented disease progression. However, it did not become a standard MS therapy due to the risk of raising the serum calcium

No one should be without these health benefits. - Colleen Hayes

Prevent MS?Vitamin DCan

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

Colleen Hayes has studied vitamin D and MS for 20 years.


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

not the males from developing EAE. This is in contrast to calcitriol, which protects both females and males,” Dr. Hayes said. “Our follow-up study showed that females need a source of estrogen to obtain the benefits of vitamin D. In other words, estrogen and vitamin D work together in female rodents to protect them from developing EAE.” According to Dr. Hayes, male mice broke down the vitamin D-derived calcitriol faster than females.

“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 need for vitamin D during puberty, according to Dr. Hayes. “We will not know

whether raising vitamin D levels can reduce MS relapse rates and prevent MS disease progression until an intervention study is performed. We need to raise the vitamin D levels in MS patients and determine if there are benefits as regards their disease,” Dr. Hayes said. Currently, there are two clinical trials treating MS patients with vitamin D: One in Canada and another in Finland.

Although vitamin D is notoriously difficult to get in a diet, the following foods can help:3.5 oz salmon, cooked360IU

1 tbsp cod liver oil1,360IU

1 cup fortified milk98IU

3 oz tuna fish, canned in oil345IU

3.5 oz mackerel, cooked345IU

1 whole egg (yolk contains vitamin D)20IU

3/4 to 1 cup fortified cereal40IUVitamincontentvariesbybrand.

1 tbsp fortified margarine60IU

1.75 oz sardines, canned in oil345IU

1 oz Swiss cheese12IU

A simple rule is this, if there is not enough sunlight to get a tan, then vitamin D3 supplements are needed. - Colleen Hayes


You can do your own vitamin D intervention study with your physician, according to Colleen Hayes. Here’s how. 1.MeasureyourMSsymptomsbyatimed walkingtestoravisiontestoracognitiontest 2. TakevitaminDsupplementsandmeasurethe serum25-Dlevels-theformofvitaminDinthe blood 3.MeasureyourMSsymptomsagaintoseeif thereisimprovement

And what are Dr. Hayes recommendations for now? “InthecompleteabsenceofUVLexposure,anaverage adult will need 100 micrograms of vitamin D3 (about4000IU)eachday,”Dr.Hayessaid.“WhenUVLexposureislimitedbylowsunlightintensityinthewinter 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 goodUVLexposurebecausetheabilityfortheskintoform vitamin D declines with age she said. Dr.HayescautionedthatthereisnotenoughUVLintensity 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.

Vitamin D Studies to ContinueHayes Receives Grant from National MS Society TheNationalMultipleSclerosisSocietyannouncedinOctoberthatColleenHayes,PhD,andaprofessorattheUniversityofWisconsin-Madison,willreceiveathree-year$485,469granttocontinueherstudyofvitaminDandhowitmayinfluencemultiplesclerosis.ThisisDr.Hayes’fifthawardfromtheNationalMultipleSclerosisSocietyin10years,duringwhichtimeshehasreceived$1.8million. MSresearchershavewonderedwhyMSoccurslessofteninregionsoftheworldwhereexposuretosunlightishigh.ThereisevidencethatvitaminD,whichismadebycellsintheskininresponsetosunlight,andcalcitriol–ahormonederivedfromvitaminD–maysuppresstheimmuneresponseinvolvedinMS. Inhernewresearchproject,Dr.HayeswillstudyhowvitaminDmayinfluenceMS-likediseasetoshedlightonpossiblewaystopreventandtreathumanMS. Inpreviousresearch,Dr.HayesfoundthatapulsedoseofcalcitriolcombinedwithvitaminDsupplementsinducedalong-lastingremissionofexperimentalautoimmuneencephalomyelitis(EAE),adiseasesimilartoMS,inlabmice.Forthenewproject,Dr.HayeshasassembledagroupofcollaboratorsfromWisconsin,Missouri,Oregon,OhioandCanadatodeterminehowcalcitriolsuppressesautoimmuneactivityinEAE.TheirworkwillprovideimportantinformationabouttheactivityofvitaminDandcalcitriolanditsinteractionswiththeimmunesystemandinflammation.ThenewinsightsgleanedfromthisworkwillhelptoinforminvestigatorswhoareplanningfutureclinicaltrialstodeterminewhethervitaminDand/orcalcitriolcanbenefitpeoplewithMSorpreventnewcasesofthedisease.

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

MY CAUSE

MY CURE

<< Lift this page

Regardless of how it got there; that mean, myelin-eating 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.

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? •Itmeansconnectingwitheachotherandwiththe National Multiple Sclerosis Society-Wisconsin Chapter. •Itmeansnotwaitingforsomeoneelsetomakethe first move. •Itmeansbelievingyoucanmakeadifference. •Itmeansdoingeverythingyoucantodrive researchandsupportthoseaffectedbyMS.

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 incometaxcheck-offprogram. 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.

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.

My Cause. My Cure. My Commitment.

*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 [email protected] and connect to valuable programs, services, networks and support.

MS Factoid: Last year, Wisconsin Chapter programs and services were utilized by 12,992 residents.

MS Factoid: In 2009, the Wisconsin Chapter made the fourth-largest contribution to MS research in its 31-year history: $1.1 million.

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 UnitedWaycampaigncoordinatorforaDonorDesignation 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 ofthehighestincidenceratesofMSintheU.S.,with1-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 someonewho has MS, you are a face of MS and your story will make a difference. Your story will make MS real.

MY COMMITMENTto a world free of MS

Remember: Orange is the New PinkMS 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 [email protected].

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

MY COMMITMENTto a world free of MS

MS Factoid: Of the 10,000-plus Wisconsin residents diagnosed with MS, more than twice as many women as men have the disease.

MY CURE

the Wisconsin Chapter by calling 262-369-7170 or e-mailing [email protected].

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 [email protected].

Join a Wisconsin Chapter Fundraising EventWhether 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 [email protected].

YES, this is my cause. Here is my commitment

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

q EnclosedismycheckpayabletotheNationalMSSociety-WisconsinChapter

q Pleasebillmy:q Visaq MasterCardq Discover intheamountof:$________________________

CardholderName(asitappearsoncard):_______________________________________________________

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Signature:_______________________________________________________________________________

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

Please accept my gift to help men, women and children with MS.

MAIL TO: NationalMSSociety-WisconsinChapter,1120JamesDrive,SuiteA,Hartland,WI53029

MS Factoid: Wisconsin has one of the highest incidence rates of MS in the U.S.

*IncludesGoldenCirclemembership

The MS communitynow has a new address

Visit www.MSActiveSource.com today

Log on to www.MSActiveSource.comand create your own MS home today!

My MS Memory BuilderGames and exercises to

help you stay focused

Make the connection to a valuable new resource for peoplewith MS! www.MSActiveSource.com is now online to providethe information and support you need each and every day.

The new www.MSActiveSource.com has a range of customized,interactive tools that can help you stay on top of your MS.

MS Video StoriesLearn from other people living

with MS… just like you

My MS LogbookHelps keep track of your treatment

and daily MS management

MS ACTIVESOURCE is a registered trademark of Biogen Idec.MS ACTIVESOURCE is sponsored by Biogen Idec and Elan Pharmaceuticals, Inc.BIOGEN IDEC and the BIOGEN IDEC logo are registered trademarks of Biogen Idec.The ELAN logo is a registered trademark of Elan Corporation, plc.

© 2009 Biogen Idec. All rights reserved. Printed in U.S.A. 06/09 0-3507-01

®

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Paid Advertisement

The MS communitynow has a new address

Visit www.MSActiveSource.com today

Log on to www.MSActiveSource.comand create your own MS home today!

My MS Memory BuilderGames and exercises to

help you stay focused

Make the connection to a valuable new resource for peoplewith MS! www.MSActiveSource.com is now online to providethe information and support you need each and every day.

The new www.MSActiveSource.com has a range of customized,interactive tools that can help you stay on top of your MS.

MS Video StoriesLearn from other people living

with MS… just like you

My MS LogbookHelps keep track of your treatment

and daily MS management

MS ACTIVESOURCE is a registered trademark of Biogen Idec.MS ACTIVESOURCE is sponsored by Biogen Idec and Elan Pharmaceuticals, Inc.BIOGEN IDEC and the BIOGEN IDEC logo are registered trademarks of Biogen Idec.The ELAN logo is a registered trademark of Elan Corporation, plc.

© 2009 Biogen Idec. All rights reserved. Printed in U.S.A. 06/09 0-3507-01

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Deadline to Apply is January 152010 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 [email protected] or phone 262-369-4420.

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.

Program Benefits Research Birkie Skiers for Cures Partners with Society for 2nd Year

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.

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. • $2,500fromtheNational Association of Theater Owners for the MS Luncheon. • $2,500fromTeva Neuroscience to support special family networking programs. • $5,000fromThe Jerome and Dorothy Holz Family Foundation for the MS College Scholarship program. • $2,500fromBiogen Idec to support special family networking programs. • $500fromthePukall Lumber Foundation for general support. • $5,000fromEMD Serono for educational programming.

Grant Support Powers MS Programs, Events


Pharmaceutical Companies Provide Financial Assistance toQualified 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 orzero co-pays. You’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

Bayer

BiogenIdec

EMDSerono

TEVA

Drug Therapy

Betaseron

TysabriAvonex

Rebif

Copaxone

Financial Assistance Program Name

BETAPLUS

MSActiveSource

MSLifelines

SharedSolutions

Web Site

betaseron.com

msactivesource.com

mslifelines.com

copaxone.com/supportservices

Phone

800-788-1467

800-456-2255

877-447-3243

800-887-8100

Thank You Challenge Walk MS Sponsors


Challenge Walk MS Held in Breathtaking Door County2nd 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 [email protected] 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.


Thank YouBike MS: TOYOTA Best Dam Bike Ride Sponsors

PresentedbyyourMilwaukeeandMadisonAreaTOYOTADealers:Wilde•Smart•RussDarrowRuda•Kenosha•JonLancasterJackSafro•Hesser•Heiser•Gentile•DonJacobs•Andrew

Title Sponsor

Partnering Sponsors Champion Sponsors

Motivational SponsorsBakerTilly•GentivaHealthServices•NutoFarmSupplyInc•R&RInsurance•TurkeFamilyMedicine•WEEnergies

Encouraging SponsorsCNAFoundation•Ernst&Young•FirstBusinessBank•TDSTelecom

Media SponsorsNBC15,Madison•Fox6,Milwaukee•105.1,CharlieFM

Bike Shop SponsorsWheel&Sprocket•TrekBicycleStore•RainbowJerseyBicycles•MachineryRowBicycles•Erik’sBikeShop•CrankDaddy’s

In-Kind SponsorsArcticGlacier•Culligan•Miller64•RockfordSilkScreen•TonyMachiFruits

Inspiration Sponsors

Community Sponsors


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.

More Than $1.5 Million Generated for MSCyclists Battle Back Roads and Wind to Complete Bike MS

1. RiderscaughtaglimpseoftheCapitolastheyrolledtothefinish.2. ThreegenerationsofEngels–grandsonMax,sonJonathanandfatherBob–celebratethecompletionofBikeMS.3. Throughouttheroute,thisyear’scyclistsconsistentlygaveBikeMSabigthumb’sup.4. ChuckScherwinskigrabbedtheyellowjerseyandwasnamedtheNumberOnefundraiser.5. AFinishLinetradition,individualswithMSsignedriderbibs.

1. 2.

3. 4. 5.

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.

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

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.

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 Crosse-area 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 [email protected] or call 262-369-7170 to sign up. You’ll receive informative Action Alerts from the National Multiple

Wisconsin Chapter News and NotesThis is How We Move It

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.


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

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.

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.

MS Snowmobile Tour January28-31

Birkie Skiers for CuresFebruary25-27

MS Awareness Week March8-14

Legislative Affairs Day March10

Wisconsin Chapter Board Meeting March23

Walk MS: Menomonee Falls April17

Walk MS: Brown County, Racine/Kenosha April18

Walk MS: Manitowoc - Two Rivers, Sheboygan County, North Central WisconsinApril24

Walk MS: Eau Claire - Chippewa Valley, Fond du Lac County, Fox Cities, La Crosse - Seven Rivers, Waukesha CountyApril25

Walk MS: Madison, Summerfest Grounds, Rock RiverMay2

MS SummitWisconsin Dells May21-22

MS Luncheon MilwaukeeJune15

MS LuncheonMadisonJune16

Wisconsin Chapter Board Meeting June22

Bike MS: Best Dam Bike RideAugust7-8

Challenge Walk MS September24-26

Wisconsin Chapter Board Meeting September28

MS DayMilwaukee County ZooFall

Wisconsin ChapterCalendar of Events


wisMS.org • Toll Free 1 800 242 3358 • 262 369 4400

Non-Profit OrganizationU.S. Postage

Milwaukee, WI 53202Permit No. 2868

PAID1120 James Drive Suite A Hartland, WI 53029

Mailing Label ChangesPleasechecktheappropriateboxbelow,correctthelabelandreturntotheWisconsinChapter. Namechangeormisspelled Addresschange Removefrommailinglist Receivedmorethanonecopy PleasesendmemyMSConnection viae-mail.Mye-mailaddressis:__________________________________________

The Moms MS Circle of Hope self-help group started in June 2007 in Waukesha County. Since that time, the number of regular participants has increased to 15 – including a few guests of the opposite sex, otherwise known as dads. During a recent meeting, facilitator Lisa Krisik shared details about a community outreach program the Moms had just launched. “Our children often see us receiving help from others,” said Krisik. “We wanted to do something to show our children that even though we have MS, we can help others, too.” From that heartfelt sentiment, an initiative to provide children of neurology patients at Waukesha Memorial Hospital with “comfort gifts” was born. Over the course of several weeks the Moms and their families collected coloring books, beanie babies, stuffed animals, hand-knitted prayer shawls and books. Moms’ member

Victoria Dornburg shared that she visits area rummage sales and leaves a card requesting that “leftovers” be donated to the group’s hospital initiative. On Friday, September 4, five Moms members and their eight children presented the goodies to the neurology unit at Waukesha Memorial Hospital. The gifts can be utilized by the children while they are visiting the hospital – or taken home to enjoy. In just

the first month, 23 coloring books had made their way into happy hands. “This is an ongoing program,” said Krisik, “and we welcome donations.” The Moms MS Circle of Hope self-help group meets the first Wednesday of each month at 3:30 p.m. at St. Dominic Church, 18255 West Capitol Drive in Brookfield. Childcare is provided. For details about the group – or to make a donation to the hospital outreach program – please contact Lisa at 414-336-2437 or [email protected].

Putting the Shoe on the Other FootMS Moms Collect Donations for Children of Waukesha Memorial Patients

Several Moms MS Circle of Hope self-help group members helped deliver donations to Waukesha Memorial Hospital’s neurology unit. Back row from left: Sally Ketter, Anne Angeli and Lisa Krisik. Front row from left: Donna Esser and Victoria Dornburg. Not pictured: Tammy Berghauer and Lyndi Mirkes.

Documents

MS Connection - Fall 2009