MS Connection Summer 2013 by National Multiple Sclerosis Society-Wisconsin Chapter

From then to now: 30 years of Bike MS

Wisconsin Chapter:

Where Does the Money Go?

83.6 10.7 5.7

Wisconsin Chapter Board of Trustees David Rodgers, Chair Briggs & Stratton Corporation

Dennis Christiansen Community Advocate

Pamela Evason Windermere Wealth Advisors LLC

Michael Lutze, Vice Chair Ernst & Young

Robert Engel Retired, M&I Bank

Paul Jones Harley-Davidson, Inc.

Tom Golden, Vice Chair M3 Insurance Solutions, Inc.

Paul Jones Harley-Davidson, Inc.

Wayne Larsen ATI Ladish LLC

Pamela Evason, Vice Chair Windermere Wealth Advisors, LLC

Wayne Larsen Ladish Company Foundation

James Rose, Treasurer Baker Tilly Virchow Krause, LLP

Robert Engel Retired, M&I Bank

Mission

Bruce Olson The Marcus Corporation Shelley Peterman Schwarz Meeting Life’s Challenges, LLC

Robert Sowinski, Secretary Diversified Insurance Solutions

Martin McLaughlin Reinhart Boerner Van Deuren, s.c. Shelley Peterman Schwarz Meeting Life’s Challenges, LLC

Kenneth Minor, Past Chair Sonic Foundry, Inc.

David Raysich Plunkett Raysich Architects

Colleen Kalt, President & CEO National MS SocietyWisconsin Chapter

Jeffrey Steren Steren Management/McDonald’s

Martin McLaughlin Reinhart Boerner Van Deuren, S.C.

Fundraising

Patricia Raysich Community Advocate

Jeffrey Steren Steren Management/McDonald’s Robyn Turtenwald

Community Advocate & General Management

Anne Brouwer McMillianDoolittle, LLP Robert Buhler Open Pantry Food Marts of Wisconsin, Inc.

Robyn Turtenwald Community Advocate Molly Walsh Groundwork Consulting

Molly Walsh

Source: 2012 Audited Financial Statement Waisman Center ©2013 National Multiple Sclerosis SocietyWisconsin Chapter MS Connection is a quarterly publication of the National Multiple Sclerosis SocietyWisconsin Chapter. Editor: Maureen Waslicki Assistant Editor: Amanda Gasper Krueger Art Directors: Amy Malo, Joan Hartin To comment or share a story idea, call 262-369-4421 or email maureen.waslicki@nmss.org

MS Connection | 2

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

Thirty Years! That’s how long Bike MS: TOYOTA Best Dam Bike Ride has been in existence. Granted, it’s been known by other names – most notably the MS 150 – but through it all, we’ve maintained the Best Dam Bike Ride moniker. Why? Because we have always strived to make it the best experience possible for our dedicated riders who not only commit their weekend to being part of the event, but also countless hours and resources raising incredible amounts of money in the hope of helping those affected by multiple sclerosis.

30 Yea

rs Supporting the MS Movement

And help you have. When the ride began, people diagnosed with MS were often told to go home and do nothing because there was nothing to be done for them. Today we know so much more and can help so much more, thanks to incredible advancements in research and a more thorough understanding of resources that can address the varied effects of this disease. Part of what makes the ride the best is the Saturday night celebration in Whitewater, and this year will be no exception. We have a lot to celebrate because this little ride has literally changed the course of MS: $23 million raised in 30 years leading to 10 FDA-approved treatment options (and more on the way), as well as other advances that are bringing us closer to restoring function and maybe even preventing MS from affecting future generations. Best Dam Bike Ride participants have been part of every single advancement and will continue to be. We hope you will be among them.

In gratitude,

Colleen G. Kalt President & CEO

Grants Support Research, Programs and Services The Wisconsin Chapter thanks the following organizations for the grants recently awarded in support of research, programs and services that are critical to people affected by MS.

• $10,000 from Acorda Therapuedics, Inc. • $10,000 from Edward U. Demmer Foundation • $7,500 from EMD Serono, Inc. • $500 from Evan & Marion Helfaer Foundation • $500 from Jewelers Mutual Charitable Giving Fund within the Community Foundation of the Fox Valley Region

In total, $28,500 was received in gifts and grants from January to March 2013. If you are connected to a foundation that you would like to suggest for a grant opportunity, or for more information on how you can help, contact Cindy Yomantas at 262-369-4431 or cindy.yomantas@nmss.org. MS Connection | 3

How We Move It Wisconsin Chapter News and Notes

MS Summit

(left to right) MS experts Colleen Hayes, Alexander Ng and Julie Olson joined Wisconsin Chapter President and CEO Colleen G. Kalt during the afternoon session at MS Summit this spring.

Nearly 200 individuals affected by multiple sclerosis came together on March 16 for the MS Summit, held at the Country Springs Conference Center in Pewaukee, to learn from some of the state’s leading MS researchers and physicians during MS Awareness Week. The speakers were Drs. Bonnie Dittel, John Fleming, Colleen Hayes, Bhupendra Khatri, Alexander

Ng and Julie Olson. Next year’s MS Summit will be held March 15. Sam’s Club Contributes Special thanks to Sam’s Club employees and operations staff around the country – including 12 locations in Wisconsin – for their hard work, collective efforts and noteworthy commitment to ending MS forever. In just six short weeks, they raised $2 million to benefit those affected by MS – an increase from $500,000 last year. Searching for Partners in Care The National MS Society launched a web search feature to help people living with MS and their families connect with qualified providers of MS care. Anyone is now able to search for Partners in MS Care by state, distance from a ZIP code or by category. Visit www.nationalmssociety.org/partners-in-mscare/index.aspx or call an MS Navigator at 800-344-4867 for assistance.

Volunteers from Robert W. Baird & Co. helped with data entry for Walk MS during the company’s “Baird Gives Back Week.” In total, 23 volunteers visited the Hartland office during three days in May, including several employees who have connections to MS.

MS Connection | 4

Helping a Neighbor in Need

Donations of time and money help Janesville man regain independence through home ramp installation

n March, members of the Cargill United Methodist Church adult mission team built and installed a wheelchair ramp for Robert “Scott” Allen Jr., a 47-year-old Janesville resident who was diagnosed with multiple sclerosis in 2001 and has been unable to easily leave his home of late because it is not wheelchair accessible. The National Multiple Sclerosis SocietyWisconsin Chapter provided the funds to purchase the materials. Thanks to the donation of services by David Kemp, a retired carpenter; Dave Sheen, a retired firefighter; and other members of the Cargill United mission team, at least $1,000 was saved on the total cost of the project – funds that can be applied toward additional initiatives that will help others with MS in Wisconsin maintain their independence and improve their quality of life.

Jere Johnson, an MS self-help group leader and Walk MS committee member from Janesville, was instrumental in securing the skills and services of the Cargill United mission team, and even raised $500 on his own. Allen said he’s looking forward to being able to go out to eat again and getting outside to sit in his back yard. “Thank you to everyone involved,” Allen said.

“ I can go out to eat and go out into the back yard.” - Robert “Scott” Allen Jr.

Members of the Cargill United Methodist Church adult mission team helped build and install a wheelchair ramp to give Robert “Scott” Allen Jr. of Janesville the ability to leave his house again. “I can go out to eat and go out into the back yard,” he said. (left to right) David Kemp, Ron Shuler, Mary Allen, Robert “Scott” Allen Jr., Paul Kemp, Bob Stalsberg and Dave Sheen. Not pictured: Eric Allison and Bob Naatz.

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In people with MS—

Walking better matters

Only AMPYRA® (dalfampridine), an oral medication, improves walking in people with multiple sclerosis (MS). AMPYRA is not a disease-modifying treatment (DMT). DMTs are not indicated to treat walking in people with MS. AMPYRA can be taken with or without a DMT.

AMPYRA® (dalfampridine) is indicated as a treatment to improve walking in patients with MS. This was demonstrated by an increase in walking speed. IMPORTANT SAFETY INFORMATION Do not take AMPYRA if you have ever had a seizure, or have certain types of kidney problems, or are allergic to dalfampridine (4-aminopyridine), the active ingredient in AMPYRA. Take AMPYRA exactly as prescribed by your doctor. You could have a seizure even if you never had a seizure before. Your chance of having a seizure is higher if you take too much AMPYRA or if your kidneys have a mild decrease of function, which is common after age 50. Your doctor may do a blood test to check how well your kidneys are working, if that is not known before you start taking AMPYRA. AMPYRA should not be taken with other forms of 4-aminopyridine (4-AP, fampridine), since the active ingredient is the same.

Visit Ampyra.com to find out more about a FREE* TRIAL. *Limitations and Restrictions apply.

In two pivotal trials 35% and 43% of patients taking AMPYRA responded to treatment vs. 8% and 9% of patients taking placebo. Talk to your doctor to see if AMPYRA may be right for you. AMPYRA may cause serious allergic reactions. Stop taking AMPYRA and call your doctor right away or get emergency medical help if you have shortness of breath or trouble breathing, swelling of your throat or tongue, or hives. Please see the full Patient Medication Guide on the following page. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/ medwatch, or call 1-800-FDA-1088. AMPYRA® is a registered trademark of Acorda Therapeutics®, Inc. AMPYRA is marketed by Acorda Therapeutics, Inc. and is manufactured under license from Alkermes Pharma Ireland Ltd. © 2013 Acorda Therapeutics, Inc. All Rights Reserved. 05/13 AMP2446 PAID ADVERTISEMENT

MEDICATION GUIDE FOR AMPYRA® (am-PEER-ah) (dalfampridine) Extended Release Tablets Read this Medication Guide before you start taking AMPYRA and each time you get a refill. There may be new information. This information does not take the place of talking with your doctor about your medical condition or your treatment. What is the most important information I should know about AMPYRA? AMPYRA can cause seizures. • You could have a seizure even if you never had a seizure before. • Your chance of having a seizure is higher if you take too much AMPYRA or if your kidneys have a mild decrease of function, which is common after age 50. • Your doctor may do a blood test to check how well your kidneys are working, if that is not known before you start taking AMPYRA. • Do not take AMPYRA if you have ever had a seizure. • Before taking AMPYRA tell your doctor if you have kidney problems. • Take AMPYRA exactly as prescribed by your doctor. See “How should I take AMPYRA?” Stop taking AMPYRA and call your doctor right away if you have a seizure while taking AMPYRA. What is AMPYRA? AMPYRA is a prescription medicine used to help improve walking in people with multiple sclerosis (MS). This was shown by an increase in walking speed. It is not known if AMPYRA is safe or effective in children less than 18 years of age. Who should not take AMPYRA? Do not take AMPYRA if you: • have ever had a seizure • have certain types of kidney problems • are allergic to dalfampridine (4-aminopyridine), the active ingredient in AMPYRA What should I tell my doctor before taking AMPYRA? Before you take AMPYRA, tell your doctor if you: • have any other medical conditions • are taking compounded 4-aminopyridine (fampridine, 4-AP) • are pregnant or plan to become pregnant. It is not known if AMPYRA will harm your unborn baby. You and your doctor will decide if you should take AMPYRA while you are pregnant. • are breast-feeding or plan to breast-feed. It is not known if AMPYRA passes into your breast milk. You and your doctor should decide if you will take AMPYRA or breast-feed. You should not do both. Tell your doctor about all the medicines you take, including prescription and non-prescription medicines, vitamins and herbal supplements. Know the medicines you take. Keep a list of them and show it to your doctor and pharmacist when you get a new medicine. How should I take AMPYRA? • Take AMPYRA exactly as your doctor tells you to take it. Do not change your dose of AMPYRA. • Take one tablet of AMPYRA 2 times each day about 12 hours apart. Do not take more than 2 tablets of AMPYRA in a 24-hour period. • Take AMPYRA tablets whole. Do not break, crush, chew or dissolve AMPYRA tablets before swallowing. If you cannot swallow AMPYRA tablets whole, tell your doctor. • AMPYRA is released slowly over time. If the tablet is broken, the medicine may be released too fast. This can raise your chance of having a seizure. • AMPYRA can be taken with or without food. • If you miss a dose of AMPYRA, do not make up the missed dose. Do not take 2 doses at the same time. Take your next dose at your regular scheduled time. • If you take too much AMPYRA, call your doctor or go to the nearest hospital emergency room right away. • Do not take AMPYRA together with other aminopyridine medications, including compounded 4-AP (sometimes called 4-aminopyridine, fampridine). PAID ADVERTISEMENT

What are the possible side effects of AMPYRA? AMPYRA may cause serious side effects, including: • serious allergic reactions. Stop taking AMPYRA and call your doctor right away or get emergency medical help if you have: – shortness of breath or trouble breathing – swelling of your throat or tongue – hives • kidney or bladder infections See “What is the most important information I should know about AMPYRA?” The most common side effects of AMPYRA include: • urinary tract infection • trouble sleeping (insomnia) • dizziness • headache • nausea • weakness • back pain

• • • • • • •

problems with balance multiple sclerosis relapse burning, tingling or itching of your skin irritation in your nose and throat constipation indigestion pain in your throat

Tell your doctor if you have any side effect that bothers you or that does not go away. These are not all the possible side effects of AMPYRA. For more information, ask your doctor or pharmacist. Call your doctor for medical advice about side effects. You may report side effects to the FDA at 1-800-FDA-1088. How should I store AMPYRA? • Store AMPYRA at 59°F to 86°F (15°C to 30°C). • Safely throw away AMPYRA that is out of date or no longer needed. Keep AMPYRA and all medicines out of the reach of children. General Information about the safe and effective use of AMPYRA Medicines are sometimes prescribed for purposes other than those listed in a Medication Guide. Do not use AMPYRA for a condition for which it was not prescribed. Do not give AMPYRA to other people, even if they have the same symptoms that you have. It may harm them. This Medication Guide summarizes the most important information about AMPYRA. If you would like more information, talk with your doctor. You can ask your pharmacist or doctor for information about AMPYRA that is written for health professionals. For more information, go to www.AMPYRA.com or call 1-800-367-5109. What are the ingredients in AMPYRA? Active ingredient: dalfampridine (previously called fampridine) Inactive ingredients: colloidal silicon dioxide, hydroxypropyl methylcellulose, magnesium stearate, microcrystalline cellulose, polyethylene glycol, and titanium dioxide. Distributed by: Acorda Therapeutics, Inc. Ardsley, NY 10502 Issued 01/2013

This Medication Guide has been approved by the U.S. Food and Drug Administration. AMPYRA® is a registered trademark of Acorda Therapeutics®, Inc. Manufactured for Acorda under license from Alkermes Pharma Ireland Limited (APIL), Athlone, Ireland, utilizing APIL’s MatriX Drug Absorption System (MXDAS®) technology. MXDAS® is a registered trademark of Alkermes Pharma Ireland Limited (APIL). U.S. Patent Nos.: US 5,540,938 and US 8,007,826 The stylized Acorda logo is a registered trademark of Acorda Therapeutics®, Inc. ©2013, Acorda Therapeutics, Inc. All rights reserved. 0113427ART-0 PAID ADVERTISEMENT

with Board of Trustees Chair Dave Rodgers Dave Rodgers was named National Multiple Sclerosis Society-Wisconsin Chapter Board of Trustees Chair at the Chapter’s annual meeting in December. The Senior Vice President and Chief Financial Officer for Briggs & Stratton Corporation (headquartered in Wauwatosa, Wis.), Rodgers is a 1992 graduate of Marquette University and is active on several local boards. He first became involved with the Wisconsin Chapter as a volunteer at Bike MS: Best Dam Bike Ride; he joined the Chapter’s Board of Trustees in 2006 and will serve as Chair through 2014. What are your plans as the current Board of Chapter President & CEO Colleen Trustees chair? G. Kalt and Board of Trustees I want to make sure our volunteers and donors have a clear understanding of their connection to the work being done with Chair Dave Rodgers attended the National Multiple Sclerosis the funds that are raised. We’ve had a lot of success in the last 10 Society-Wisconsin Chapter’s to 15 years with drug therapies being introduced whereas we didn’t annual meeting in December. have any 20 years ago, and there is a lot of momentum now in research in terms of stopping, restoring and ending MS. I would like people to understand that it’s because of their efforts. We want to keep that momentum going and continue down the path of turning that hope into a reality.

“It’s really an exciting place to be when you think about the progress that’s been made and the hope and promise that researchers think is on the horizon.”

When others ask you about your work with the Chapter and the National Multiple Sclerosis Society, what do you tell them? One of the things I tell people is that our volunteers, our staff and all of the people who participate in our events and programs have passion that goes beyond what I see in many of the other things that I do. It’s really all of them that keep me motivated and engaged in events and get me excited to encourage the board to be involved. It’s really an exciting place to be when you think about the progress that’s been made - Dave Rodgers and the hope and promise that researchers think is on the horizon.

Why is it important for people to support the Chapter? In what ways do you hope others will get involved? The Board spends a lot of time discussing how we can increase the dollars for research and how we can help people affected by MS in terms of programs and services. All are critically important to those we serve. As I talk to people about supporting the Chapter and getting involved, it includes everything from volunteering and raising funds to being supportive of others who have been touched by MS so we can improve the lives of those impacted, but also so we can accelerate looking for cures to the disease. MS Connection | 9

It’s All in the Family

Chad and Shanna Venne inspire others to join Bike MS

The Vennes enjoy many aspects of Bike MS: TOYOTA Best Dam Bike Ride, including the Saturday night celebration ceremony.

hen Chad and Shanna Venne decided to ride in Bike MS: TOYOTA Best Dam Bike Ride, they didn’t even own bicycles. “The thought of riding that far had never crossed my mind,” Shanna said. “I like to jump into things, so I convinced Chad that we should do the ride. We didn’t own road bikes and we didn’t know how to train.” Riding for her brother Steven, who was diagnosed with MS 10 years ago, Shanna said, “We just did it.” Since that first ride in 2007, the event has become a family affair.

Chad added, “It made such an impact on us that we told our families they need to experience the ride in some way and join this great community.” They did. Shanna’s parents, Rick and Sandy Bruening, help serve a continental breakfast in Waukesha the morning of the ride. Steven helps with bike lock up Saturday night in Whitewater. Chad’s parents, Dan and Gail Venne, cheer them on at the starting line. Shanna’s sister Stephanie and her fiancé Troy have worked MS Connection | 10

the morning registration. And because Shanna was pregnant during the 2012 event, Stephanie rode along with Chad for her first ride. “It was an amazing experience,” Stephanie said. “I never thought I would make the whole 75 miles, but once you get to check-in and see all the riders excited to get out on the road, everything changes. All I could think about is what I am doing to help this cause, help save lives.”

“ It made such an impact on us that we told our families they need to experience the ride in some way and join this great community.”

- Chad Venne

CHRONICLING THE JOURNEY The Vennes have been sharing their experience on the ride through slideshows and videos. “We looked at the pictures and thought it would be a cool idea to share these with the people who sponsored us,” Chad said. “It was hard to put the scale and awesomeness of this event into words, so we thought, ‘Why not create a slideshow?’” After receiving a positive response to their slideshow, they continued, eventually making videos and adding them to YouTube.com. “It makes us so happy when we hear people tell us they shared our video with people they know that are touched by MS,” Chad said. “It has helped us raise a lot of money for MS, but more importantly, it has helped us to spread awareness and shine a small spotlight on all the good that comes out of this ride.” Shanna added, “The video is also an excellent way to show our sponsors the size and impact their donation has. It is hard to imagine how incredible this event is until you see it. For those who can’t participate, it gives them a window to see this wonderful community and how much their support means to everyone.” The Experience Their videos capture the Bike MS: TOYOTA Best Dam Bike Ride experience. Shanna said, “The little things on the ride are so important.” Chad explained, “If we had to sum it up I’d say it’s the positiveness and support of the volunteers and riders, the hospitality of the small towns along the way, unexpected ice water at a rest stop, a shower in Whitewater, the massages after

day one, self-serve ice cream at dinner, getting goosebumps watching the heroes (individuals with MS) walk on stage, Rocky Rococo pizza on the way out of the tent, remembering a fan for the dorm room, passing the last rest stop, seeing a sign on the back of a car saying ‘Thanks for Riding I have MS’ along with a smile and a thumbs up from its author, mile 150, passing out on the air conditioned bus after finishing, and of course making our slideshow!” The family gathers for the celebration program in Whitewater on the first night of the ride. A highlight of the night is when those with MS are asked to come to the stage if they want to. “Over the years, Steven has gotten braver and now usually jumps out of his seat to take his place on stage,” Shanna said. “I think a contributing factor to his change in attitude is seeing how everyone comes together to raise awareness and to show their support.” Steven, who said he hasn’t had many symptoms of MS since his diagnosis 10 years ago, responded, “Shanna wants to see me go on stage, so I make her happy.” The Next Mile Chad and Shanna’s “rookie rider” Everly was born August 20, three weeks after the 2012 Bike MS: TOYOTA Best Dam Bike Ride. “She already loves being outside in her hiking backpack and we will be in the market for a kid’s bike trailer soon,” Shanna said. “It’s never too early to start riding!” And while Chad and Shanna will not be able to ride this year due to a friend’s wedding, they were happy to report that some of the riders they brought to the 2012 event will be returning for the 30th annual ride, August 3 and 4, including Stephanie. She said, “My rookie year is something I will never forget and I can’t wait to ride this year the full 150 miles.” MS Connection | 11

It’s called the Best Dam Bike Ride because … ... the town of Beaver Dam was the overnight stop for the two-day loop ride when it debuted in 1984. The focus then was as it is now: to create the best bike tour experience possible.

1984

Then

Gallon of Gas: $1.21 Movie Ticket: $3.36 First Apple Macintosh sold “Ghostbusters” and “Terminator” movies are released

From aerobic tights, elastic headbands and parachute pants; to mousse, mullets and the Madonna look, more than fashion trends have changed since 1984. 156 riders 75 miles each day/150 miles round-trip 3 volunteers and 2 staff members Lunch was PB&J sandwiches, dinner was fried chicken and brownies $40,745 raised

Be part of the 30th Annual Best Dam Bike Ride. Register at

Progress Made When the Best Dam Bike Ride began, the first MRI pictures of a brain affected by MS had only been produced three years prior. There were no approved treatments – oral or otherwise. The first modern documentation of cognitive problems related to MS was made. Thirty years later, there are 10 FDA-approved treatment options, including three oral therapies, for the more common forms of MS. MRIs and a better understanding of MS have led to faster, more accurate diagnoses and greater availability of services to address the individualized nature of the disease. Myelin repair, prevention and potential cures are all part of the research equation.

and

Now 2013

Gallon of Gas: $3.94 Movie Ticket: $9 Google glasses are test marketed “Lone Ranger,” “Man of Steel” and “Star Trek Into Darkness” movies reboot the classic storylines

What’s with the Beaver? The Best Dam Bike Ride began as a loop ride to Beaver Dam and back – hence the ride’s name and its fuzzy flat-tailed mascot.

1,700 riders 50-, 75- and 100-mile route options each day 450 volunteers and staffers Lunches include subs, pasta, burgers and chicken; dinner is served by UW-Whitewater’s catering services $1.5 million raised

The support of every single participant from every past Best Dam Bike Ride has helped get us here. Imagine where your continued support will take us!

bestdambikeride.org or call 262-369-4400 / 800-242-3358.

All Together for One Cause

New Best Dam Bike Ride video illustrates what the ride is all about

hat makes Bike MS: TOYOTA Best Dam Bike Ride more than a ride? That’s what longtime Bike MS supporter Leigh Mills and the Studio 88 Create video production team set out to capture at last year’s event, asking participants to share their Bike MS stories and describe why the ride is so meaningful to them. The video, which debuted on YouTube in April, is being used to encourage new and returning participants to sign up. Watch it and share the video with your friends and family if you haven’t already and ask them to get involved. You’ll find it on YouTube (search The MS Bike Ride) and at bestdambikeride.org (scroll down to the second video). Here’s more information on some of the cyclists who are featured.

Ron Sweeney ta Pedalers n ca un D n Dr. Ia Fraboni’s Porket his wife S: MS Researcher Connection to M S but ors at lin M ye re M cu n ’t w n to Mad “We ca at are th ise the s ra ce n n ca va e w ad “The maybe ry ve ly al re MS.” re cu e l being made ar ’s going to money that wil re promising. The oughs in hr be major breakt S within M of the treatment 5, 10 years.”

Christin Harding Sonic Streamers Connection to MS: herself “The camaraderie of riding with 1,600 people that are out there riding for a cure is huge.”

Barbara Ryan UW Health Red’s Riders Connection to MS: her son “The best part about the weekend is being inspired by all of the people you see.”

Curt Sauser Team CCC Connection to M “It chokes m S: himself e up just to th of its so much ink here and ever community y other and w body loves each e’re all ridin g for one cause an d to see everyb it’s so powerful ody doing th at.”

Ken Minor Sonic Streamers Connection to MS: his wife “I’ve seen firsthand all the different progress we’ve made on medications.”

It is Becoming More Difficult to Be Found Disabled at a Social Security Hearing By Tom Bush

uring the past few years it has become more difficult to be found disabled at a Social Security hearing. This is the only point in the appeal process where you get to talk with the administrative law judge (ALJ) who decides whether you are or are not disabled. For the past quarter century, the percentage of favorable decisions issued by ALJs remained fairly constant – until recently. In 2008 and 2009, for example, 63 percent of people nationally who requested hearings were found disabled. In 2012, administrative law judges found 52 percent disabled. NO CLEAR-CUT REASON The significant decline cannot be explained by actions of Congress. There have been no statutory changes that affect the number of people found disabled since a minor change in 1996 (that removed drug addiction and alcoholism as a basis for being found disabled). In 2011, the Social Security Commissioner explained that he thought the reason for the decline was that the recession prompted many people to apply for disability who did not meet disability standards. It is true that whenever there is a recession, more people apply for disability benefits. They are prompted by lack of income and by the popular misconception that it’s easy to be found disabled by the SSA. If it is true, though, this will be a blip that will run its course when the bad cases are denied by ALJs.

Lawyers who know the difference between a bad case and a good case say that even good cases are more difficult in 2013 than they were in 2009. For example, cases involving MS fatigue (without significant neurological findings) are good cases that were difficult in 2009 and are even more difficult in 2013. Cases with MS

Wisconsin’s Tom Bush shares SSDI expertise gleaned over 20 years.

fatigue plus additional limitations (significant neurological findings that nevertheless do not meet SSA’s medical standards for disability) were relatively easy in 2009, but no one would say such a case is easy in 2013.

While there has been no change for those people with MS who meet SSA’s medical standards for disability, everyone else disabled by MS is facing a more difficult time being found disabled in 2013 than they would have had in 2009. This cannot be explained by an increase in claims from people who are not disabled, though it could be that ALJs have overreacted to more claims from non-disabled people. ALJs are also influenced by what SSA refers to as the “adjudicative climate,” or the total influence on judges from the media,  politicians, think tanks with an agenda, etc. While there are news stories about increasing numbers of people receiving disability that imply how easy it must be to be found disabled, the plummeting ALJ hearing outcome statistics paint an entirely different picture. Pointing all of this out isn’t meant to discourage someone with MS from applying for benefits. People with MS usually have winnable cases. It is meant to prepare you for possible additional challenges in having a successful result. Tom Bush is the preeminent expert on SSDI in Southeast Wisconsin. A Wisconsin Chapter volunteer for 20 years, he was inducted into the National MS Society’s Volunteer Hall of Fame in 2008. Tom’s website is www.tebush.com.

MS Connection | 15

MS College Scholarship Recipients The 2013 program awarded $43,000 in scholarships to 21 Wisconsin students; 680 scholarships totaling more than

MS shouldn’t stand in the way of a college education. The National Multiple Sclerosis Society Scholarship Program, funded by the generosity of individual and corporate donors, offers relief from some of the financial and emotional burdens experienced by families affected by MS by making scholarships available to high school seniors and young adults who haven’t yet begun their post-secondary education. Applicants either have MS themselves or have a parent who has been diagnosed.

$1.1 million were awarded nationally.

Mykayla Beighley

Pigeon Falls • UW-Eau Claire

Emily Anderson

Fall Creek • UW-La Crosse

“I feel that MS has helped to make our family even closer. We have had to improvise many different activities so that we are able to do them as a family.”

“I know that MS will continue to have an impact on my life for as long as my mom is affected by the disease. For our family, it is important for us to look at the positives in our lives.”

rs Brittney Bekkein Cities N-Tw

Denmark • UM

dad I look up to my “As I grow older and th ng re st his d an more and more, ity rs ve ad e rough th perseverance th an in him re mi ad of MS makes me y.” even deeper wa

MS Connection | 16

Diversified Insurance Solutions Scholarship

Jacob Cooper

Racine • UW-Whitewater “MS is neither something we can ignore, nor will it be something we allow to control us.”

Jessica-O’L

Milwaukee • UMea Gayle N-Twin Cities “M

y mother taught me that no matt er what the road ma y look like ahea and no matter d, how discouraging something may seem, don’ t let it stop you or intimidate you.”

“My dad taught me never to give up, and to always look on the bright side of things. I greatly admire him for that reason, and challenge myself to be as admirable as he is.”

Marissa Hamby

Janesville • UW-Oshkosh

“I am determined to be the girl who couldn’t read in second grade who becomes a doctor and works towards a brighter future for all MS patients.”

Jennifer Posthuma

Fox Lake • U of N-Lincoln

Rachel Holzhaeuser

Plymouth • Colorado State University “You are in charge of yourself, and your future. No outside force can affect that. We realized a diagnosis of MS could be fueled into motivation. We have given more, learned more and loved more.”

Jessica Corbett

West Bend • UW-Eau Claire

Savannah Neu

West Bend • MSOE

“I know that it is impossible to avoid every injury and illness that befalls on our health, but I gave myself a mission to find a way to lessen the effects of disease and help heal the body.”

“I know now that life is short and you never know what’s around the corner, so live in the present and plan for the future.”

MS Connection | 17

Ladish Foundationp Scholarshi

Roper Named a Top Scholar

MS College Scholarship Recipients

Joshua Roper

Waukesha • UW-Platteville In addition to receiving the Ladish Foundation MS Scholarship, Joshua Roper was recognized as a 2013 National MS Society Top Scholar, a special designation bestowed on those who have shown exceptional performance.

(CONTINUED)

“Ultimately, I plan to obtain an engineering position. As a practicing engineer, I can help improve the quality of life around the world,” he wrote in his application. “While the professional and financial rewards will fulfill a portion of my long-term aspirations, I will continue to make a positive difference through my leadership and service.” A graduate of Waukesha West High School, Roper plans to attend the University of Wisconsin-Platteville.

Dorothy Berghaus Croal Scholarship

Elexis Rox

Tomah • Western Technical College

Madeleine Priebe

Neenah • Drake University

“Turning a tough situation into an opportunity to find your true character is a priceless virtue, one I am grateful to have been taught by an enduring role model, my father. “

MS Connection | 18

ll Zachary Rastaad ison -M

Marinette • UW

good aunt have been “My mom and my with the al de to w ho of examples to me u, as they have life throws at yo obstacles that ANSITION TR sy ea un ke the managed to ma is.” os ler ltiple sc into life with mu

“Only one person may be diagnosed, but the whole family feels the weight of MS. Such a heavy burden would break the back of only one person, but together you can fight it.”

Father ks Charles Broop Scholarshi

Paige Schreiber

Ryan Schmitz

Lodi • UW-Stevens Point

vary, but her “My mother’s limitations perseverance Her s. determination never doe iring.” insp is day the ugh to get thro

Muskego • UW-Madison

“I hope one day a miracle happens, and that my mom’s goal of finding a cure will be reached.”

Josephine Scott

Glendale • Concordia University

“I know my goals are limitless. Watching my mother struggle with MS has been difficult. It’s motivated me to stay healthy and strong.”

T. Ferguson Locke Scholarship

Ronald V Hartland • UW argo -Milwaukee

Melissa Stel

Markesan • St. Norbert College

“I would give anything for a cure to be found so MY DAD could be healthy, I would not relinquish any lessons I have learned from the hardships of having MS in my life.”

“I really feel that caretaker for my I have become a family and I feel it has allowed me to re ally cherish the time I have with each of them.”

Bell Family Scholarship

Sarah Winkler

St. Cloud • UW-Fond du Lac “I feel empowered to help change the way people feel about living with the disease.”

Anthony W

Neenah • UW-Molf adison

“I’ve never seen my mother back down from a challenge or ad versity, and I’v e realized she is a tough fig hter. I’ve learned from her to persevere th rough everythin g and anything. “

Additionally, Brianna Laake will receive the second-year renewal of her $5,000 MS scholarship from the Ladish Foundation.

MS Connection | 19

Wisconsin Rallies at Walk MS

Walk MS took the Movement to 18 communities this spring

rom Pioneer Pete in Platteville to the Cinco de Mayo-accessorized in Janesville, Madison and Milwaukee, Walk MS 2013 brought people from every “walk” of life in a massive show of support for those affected by multiple sclerosis. More than 11,000 walkers and 550 volunteers took part in the 18 events spread across four weekends between April 21 and May 11, raising more than $1.2 million to date. Fundraising remains open through the end of the month to help the National Multiple Companies such as CR Meyer Group made up some of the 1,500 teams that took part in Walk MS 2013. Sclerosis Society-Wisconsin Chapter reach this year’s $1.5 million goal. Money raised will help support research, programs and services nationwide and in Wisconsin. For details and to see more photos, go to walkMSwisconsin.org.

Walk MS: Milwaukee was the largest walk site in the state with more than 2,000 participants who raised more than a quarter-million dollars. The statewide goal is to generate $1.5 million for MS-related research, programs and services.

“The walk was truly one of the best things I could have ever done,” said Melani Larsen (with her husband, Christoper), who had more than 60 family members, friends and coworkers on her Mel’s Movers team. “It felt so great knowing so many people cared.”

More than 11,000 walkers and 550 volunteers made up the 18 Walk MS events in Wisconsin in April and May.

MS Connection | 20

Special Thanks to These Walk MS 2013 Sponsors

CHICAGO REGIONAL COUNCIL OF CARPENTERS

MS Connection | 21

Why Fundraising Events Matter

Researchers share what Bike MS means to them

DR. IAN DUNCAN

Researcher and Bike MS Team Captain (Madtown Myelinators)

“Personally, it’s a great bike event over a lovely route. It’s a great opportunity to meet people with MS and their families, to show that we are there to fundraise too, not just someone only in a lab. We let them know what we are doing in research. I always find it very moving to talk with people riding who have MS. Sometimes they ride tandem like Wendy of Team Wendy. It’s very touching to see the support they have. “Events like Bike MS help to raise much needed money and people with MS doing the events, see how much support there is for them.”

DR. BONNIE DITTEL Researcher

“Participating in Bike MS and Walk MS helps raise awareness for MS in the community and raises money to support world class MS research right here in Wisconsin. “As a MS researcher, I would like to personally thank everyone who participates in fundraising events for the Society. The money raised is an important source of research funding that increases the amount of research that wouldn’t otherwise be conducted on the cause and treatment of MS.”

Dr. Michael Carrithers Researcher and Clinician

“The fundraising is obviously important to fund research and other Society programs. However, raising awareness of MS in the community and demonstrating an individual commitment to participate in the events are at least equally important.”

MS Connection | 22

Researcher, Clinician and Bike MS Participant (Madtown Myelinators)

“As a researcher in the MS field I couldn’t be more grateful to the many people who devote the time and energy to participate in events like the Best Dam Bike Ride. In this era of ever-shrinking budgets to support medical research, I couldn’t do the work that I do without the funds raised by these events – it’s as simple as that. So if it were just fundraising, it would be enough – but as a Bike MS rider myself, I know that it is so much more than that. The spirit, camaraderie and positive attitudes that this event engenders are just incredibly moving and to be a part of it is nothing short of delightful.”

DR. AARON FIELD

Dr. John Fleming Researcher and Clinician

“I support Bike MS with contributions to our local neighborhood team (Jerry and Barbara Ryan). For a bunch of knee and other reasons, I don’t actually ride. Of course, I and everyone in research are tremendously thankful to the persons who support Bike MS. If it were not for initiatives like this, MS research would stop in its tracks.”

DR. COLLEEN HAYES Researcher

“I am very grateful to my friend Keith Kunugi (team Sonic Streamers) and all his fellow riders who are keeping MS research and services ‘rolling.’ Looking out on the MS landscape from my vantage point in vitamin D and MS research, I see a bright future.”

Making Sure No Opportunity is Wasted in MS Research The National MS Society has made the commitment to raise $250 million by 2015 for research that will stop the progression of multiple sclerosis, restore function that has been lost and end the disease forever. The NOW (No Opportunity Wasted) campaign has already made significant progress: more than 130 new multiyear projects, fellowships and initiatives were funded in 2012; the International Progressive MS Collaborative was formed; and the first human trial of a therapy targeting myelin repair was completed. Continued contributions are crucial in pursuing all promising paths. To contribute, contact Denise Jendusa at 262-369-7166 or denise.jendusa@nmss.org. SCMRI_MSmag5/13:Layout 1 5/9/13 3:59 PM Page 6

For me, that means regularly scheduled MRI scans to monitor my lesions. Several years ago, I discovered Smart Choice. Smart Choice MRI saves me thousands every year, their staff makes me comfortable each and every visit and facilities are top notch. I’m so glad to have Smart Choice MRI as a resource. Now, I don’t even have to think about my — Liz B.

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Teleconference WAKE UP! Fatigue and Sleep in MS July 8 Bike MS: TOYOTA Best Dam Bike Ride August 3-4 Teleconference Probiotics and MS August 12 Teleconference Complementary and Alternative Therapy for MS September 9

“Like many of you, I have MS.

next MRI exam, I know it will be at Smart Choice!”

Wisconsin Chapter Calendar of Upcoming Events

Sheboygan 920.547.4806

Challenge Walk MS September 20-22 MS Research NOW Speaker Series Milwaukee September 28 Wisconsin Chapter Annual Meeting December 5 MS Snowmobile Tour January 23-25, 2014 Please visit wisMS.org for the latest listing of Chapter activities and community events.

PAID ADVERTISEMENT

Correction The last issue of MS Connection included some incorrect DIY event totals. The correct totals are: Strike Out MS, $11,830; 5th Annual We’re Egan to Cure MS Fundraiser, $8,208; 8th Annual Neipert Golf Outing, $1,780; Bag MS – Bean Bag Toss Tourney, $2,056.53; 23rd Annual Croal Open for MS, $36,528; 2012 Coffee Pot Scramble Golf Outing, $1,698; The JMO – “A Drive For MS” Golf Outing, $3,660; Ironman Wisconsin, $6,074.14; Ride for Clyde, $5,120; Recipe for MS Cure – Cook book sales, $36; Volleyball Tournament, $2,125.

MS Connection | 23

Non-Profit Organization U.S. Postage

PAID

A Publication of the Multiple Multiple Sclerosis Society-Wisconsin Chapter A Publication ofNational the National Sclerosis Society-Wisconsin Chapter

1120 James Drive Suite A Hartland, WI 53029

Milwaukee, WI Permit No. 2868

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

iT’S AS MuCh ABOuT ThE

JOuRnEy AS iT iS ThE DESTinATiOn Challenge Walk MS sets a high bar with a three-day, 50-mile* walk and a $1,500 fundraising minimum. It rewards you at the same level with an all-inclusive weekend in Door County surrounded by friends, family and some of the most beautiful terrain Wisconsin has to offer.

RiSE TO ThE ChALLEnGE.