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Who Do You Walk For?

Inspire others at Walk MS


MS CONNECTION IS A QUARTERLY PUBLICATION OF THE NATIONAL MULTIPLE SCLEROSIS SOCIETYWISCONSIN CHAPTER.

National Multiple Sclerosis Society-Wisconsin Chapter Board of Trustees National MS SocietyWisconsin Chapter 1120 James Drive Suite A Hartland, WI 53029 262-369-4400 800-242-3358

David Rodgers, Chair Briggs & Stratton Corporation Michael Lutze, Vice Chair Ernst & Young Tom Golden, Vice Chair M3 Insurance Solutions, Inc.

TOLL FREE

Pamela Evason, Vice Chair Windermere Wealth Advisors, LLC

www.wisMS.org

James Rose, Treasurer Baker Tilly Virchow Krause, LLP Robert Sowinski, Secretary Diversified Insurance Solutions Kenneth Minor, Past Chair Sonic Foundry, Inc.

Editor: Amanda Gasper Krueger Content Editor: Maureen Waslicki Graphic Design and Production: Amy Malo and Joan Hartin To comment or share a story idea, call 262-369-4421 or email maureen.waslicki@nmss.org

Š2  014 National Multiple Sclerosis Society-Wisconsin Chapter

MS Connection | 2

Colleen Kalt, President & CEO National MS SocietyWisconsin Chapter Anne Brouwer McMillianDoolittle, LLP

Dennis Christiansen Secured Retirement Strategies Group, LLC Robert Engel Retired, M&I Bank Paul Jones Harley-Davidson, Inc. Rev. James Kaestner Retired Wayne Larsen Ladish Company Foundation Martin McLaughlin Reinhart Boerner Van Deuren, s.c. David Raysich Plunkett Raysich Architects Jeffrey Steren Steren Management/McDonald’s Robyn Turtenwald Community Advocate

Robert Buhler Open Pantry Food Marts of Wisconsin, Inc.

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.


“My mom.” “My wife.”

“My son.”

“Myself.”

WHO DO YOU WALK FOR? That’s a question I ask every year when I meet people at Walk MS. It’s a simple question, and it generates powerful answers. Those words, though few, demonstrate the power that comes with being involved in Walk MS. It’s where those who love someone with MS can show their support, and where people diagnosed with MS inspire others with the dignity and strength they show in how they choose to live with the disease. Angela Docherty is one of them. She walks for herself and for her sister (both were diagnosed in their 20s). But as you’ll read in this edition of MS Connection, Angela also walks for you. She’s one of the hundreds of heroes who are diagnosed with multiple sclerosis and come to Walk MS each year where they inspire their friends, their family and even strangers. This year we’ll be celebrating their contributions by wrapping those heroes in orange, the color of the MS Movement, starting with an orange “I Walk with MS” T-shirt. Other tributes are also being planned by each walk site’s volunteer committee (if you’d like to help, call us). It’s our way of honoring Angela and everyone like her for their courage, strength, determination and inspiration. I hope you’ll join us.

Colleen G. Kalt President & CEO

P.S. That beauty on the cover is Angela’s daughter. Angela walks for her, too, so she might only remember MS as the disease her mom and aunt had, but that her family helped cure.

Go to walkMSwisconsin.org or call 262-369-4400 to register. MS Connection | 3


Wisconsin’s Tax Check-off Program Changes could erase $75,000 in financial assistance for those with MS

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isconsin’s tax check-off program gives taxpayers the opportunity to make donations through their state income tax forms to support a variety of causes ranging from endangered resources to hunger relief. Multiple sclerosis was added to the list of options in 2005 and since then has helped those diagnosed with MS improve their quality of life and maintain their independence. However, new legislative changes to the tax check-off program threaten the ability to keep this vital resource available for Wisconsinites affected by the disease. Rick Olin, fiscal analyst for the non-partisan Wisconsin Legislative Fiscal Bureau, provides answers about the future of the program.

Q: What is the income tax check-off program? A: Wisconsin taxpayers may make donations for a variety of specified purposes through checkoff procedures on state individual income tax forms. From 1983 through 2000, there was a single option for making charitable donations along with filing the individual income tax in the form of a check-off for endangered resources. Starting in 2001, a check-off was added for donations for the operation and maintenance of Lambeau Field in Green Bay, and since then, nine additional check-offs have been created. Q: What are the new standards regarding the program? A: In response to the increasing number of check-offs, 2011 Wisconsin Act 222 combined the breast cancer research check-off and the prostate cancer research check-off into a single check-off for cancer research. In addition, the Act established a procedure for limiting the number of check-offs in any tax year to 10.

TOTAL DOLLARS RECEIVED

for those with MS through the Tax Check-off Program

Annual donations to MS through the tax check-off program need to return to $75,000 or more or else the Society will be dropped from the program

$95,000 $90,000 $85,000 $80,000 $75,000 $70,000

2007

2008

2009

2010

2011

2012

Visit www.wisMS.org or call 800-242-3358 for more information. MS Connection | 4

2013


Under the procedure, the least used check-offs would temporarily rotate off the form if more than 10 check-offs have been created. The 2013-15 biennial budget act, 2013 Wisconsin Act 20, changed the check-off program so that any income tax check-off that does not generate at least $75,000 in a year would be permanently removed from the state’s income tax forms. Q: Why are the standards changing? A: Act 20 made a number of changes to the state individual income tax. Some of the changes sought to simplify the administration of the tax by shortening the tax form. It is not possible to ascribe an intent to the check-off change, but reducing the number of income tax check-offs would shorten the tax form and simplify the administration of the tax checkoff program donations.

“… Wisconsin Act 20, changed the check-off program so that any income tax check-off that does not generate at least $75,000 in a year would be permanently removed from the state’s income tax forms.”

- Rick Olin, fiscal analyst Wisconsin Legislative Fiscal Bureau

Q: Is it possible they will change again? A: The check-offs reflect provisions in state law. Another law change, like the one in Act 20, could change the standard again. Q: When do the new standards go into effect? A: Tax year 2015 is the first year that any checkoff would be eliminated. The determination will be based on check-off amounts for tax year 2014 (tax returns due by April 15, 2015).

How You Can Help

Mark on your state income tax form that you want to make a donation for multiple sclerosis, then designate the amount you want to give. Ask everyone you know to do the same. Do it this year, next year and beyond. 2013

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Q: Overall, contributions through the check-offs appear to be decreasing. Why do you think this is happening? A: Since 2001, total check-off amounts have increased in some years and decreased in other years. Amounts increased in tax years 2009 and 2010, decreased in tax year 2011, and increased in tax year 2012. Relative to tax year 2011, amounts increased for the endangered resources and Second Harvest programs, and decreases occurred for six of the other programs. Introduction of the new check-off for Special Olympics in 2012 contributed to the overall increase in check-off amounts for that year. It is possible that “new” check-offs divert contributions to previously existing check-offs. MS Connection | 5

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An Oral Treatment Option for Relapsing Forms of Multiple Sclerosis (MS) Informative events for people living with MS and their caregivers. Wednesday, May 21, 2014 at 6:00 p.m. Michael Connor, DO, Medical Director, MS Clinic Maggiano’s Little Italy 2500 North Mayfair Road Wauwatosa, WI 53226 Event code: TR244693 (1127128)

MS.US.PO1497.0313

Thursday, May 29, 2014 at 6:00 p.m. Bhupendra Khatri, M.D., Center for Neurological Disorders El Fuego 909 West Layton Avenue Milwaukee, WI 53221 Event code: TR243878 (1125867) MS.US.PO1497.0313

Wednesday, June 18, 2014 at 12:00 p.m. Bhupendra Khatri, M.D., Center for Neurological Disorders Bonefish Grill 18355 West Bluemound Road Brookfield, WI 53005 Event code: TR243881 (1125868) MS.US.PO1497.0313

Wednesday, June 25, 2014 at 6:00 p.m. Cheryl Blaschuk, NP, MS Certified Nurse HobNob 277 South Sheridan Road Racine, WI 53403 Event code: TR244357 (1125497)

MS.US.PO1497.0313

Space is limited. A light meal will be served. To RSVP, please call 1-866-703-6293 or e-mail MSrsvp@ahmdirect.com PAID ADVERTISEMENT

MS Connection | 6


Bridging the Gap Between Research and Treatments Society’s Fast Forward program supports local study

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here is often a need in research to bridge the gap between promising discoveries and actual treatments. It can take a new therapy at least 15 years and billions of dollars to come to market. That is where the Society’s Fast Forward program comes in. Founded in 2007, Fast Forward is a commercial research arm of the National Multiple Sclerosis Society that contributes to Society efforts to speed treatments to people with MS. It does so by providing funding for emerging biotechnology and pharmaceutical companies and academic groups to further develop their research. Through Fast Forward, the Society invests in a multitude of companies, including a recent $225,000 commitment to ENDECE, a biotechnology company in Mequon, Wis.

ENDECE is pursuing the development of NDC-1308, a chemical compound similar to the sex hormone estradiol. They have preliminary evidence that a two-week treatment with NDC-1308 led to a significant increase in the number of immature and mature, myelin-forming cells in an animal model with myelin damage. In the laboratory, they also found that NDC-1308 promotes myelin formation around rodent nerve fibers. Now they are confirming these findings in mice and conducting further research to optimize the dose. This study may help speed a promising new treatment option forward, one with the potential to be developed into a therapy to restore function in people with MS.

For more information about the Society’s research efforts, visit fastforward.org.

Success Stories

Initial funding in emerging biotechnology companies by the National MS Society through Fast Forward has led other investors to provide funding and is helping move treatments through the drug development pathway more quickly, including clinical trials. In addition to ENDECE (noted above), a few examples include: • Apitope International – The Society invested $1 million in Apitope to support an early stage trial for a treatment for relapsing-remitting MS. Since then, the company has entered into a $200 million agreement with pharmaceutical company Merck Serono for further development of the therapy. • C  anbex Therapeutics – The Society provided funding for the development of Canbex Therapeutics treatment for spasticity in MS. After this initial investment, Canbex has received $2.8 million from charitable foundation Wellcome Trust and $3.2 million from Merck Serono Ventures and is starting a Phase 1 trial. • DioGenix – The Society funded DioGenix with $479,000 for the development of a blood-based diagnostic test for MS, which would aid physicians in a clinical diagnosis and monitoring of MS. Since then, the company has received $1.5 million in financing from investors.

MS Connection | 7


How We Move It Wisconsin Chapter News and Notes

More than 250 people connected with each other and MS experts at the 2014 MS Summit on March 15. The day included presentations on MS research, treatment and adaptive exercise along with tips on wellness and lifestyle. An on-site photo booth gave participants the chance to have some fun with MS-awareness-themed props.

APPLICATIONS AVAILABLE FOR MS YOUTH CAMP Applications are now being accepted for MS Youth Camp, June 16–21 at YMCA Camp Icaghowan in Amery, Wis. Youth Camp is a great way for young people (third grade/age 9 through 18) who have a parent with MS, or who live in a household with a person who has MS, to have fun with others their age whose world is impacted by the disease. Visit www.wisMS.org or contact Krista at 612-335-7937 or krista.harding@nmss.org for details. April 30 is the application deadline.

MS Connection | 8

ONLINE SUPPORT IS AVAILABLE The National MS Society recently expanded MSconnection.org to include online support groups so that everyone with MS, especially those who are isolated due to location or severity of their MS, can connect and find support. Some groups are even set up based on specific aspects of MS such as “Newly Diagnosed,” “Young Adults” and “Carepartners.” Learn more at MSconnection.org or visit www.wisMS.org to find an in-person self-help group in your area. RACE TO FINISH MS Finish MS is a new program that offers runners, cyclists, swimmers and other athletes the tools to turn any endurance event into a fundraiser for multiple sclerosis. Participants can receive a Finish MS singlet with a $100 minimum fundraising pledge. For details, contact Kristin Raeber at kristin.raeber@nmss.org or 262-369-4436 with questions.


Free Teleconference Series

April 14: Sharing Your Diagnosis with Friends/Family May 12: Managing Bowel and Bladder Issues June 9: Progressive MS Research July 14: Emerging Therapies August 11: Practical Nutrition for People with MS September 8: Financial Planning for a Future with MS Each teleconference is one hour and begins at 7 p.m. CDT. To register and receive call-in details for the teleconference, visit MSsociety.org or call 800-344-4867 (option 1).

The West Salem High School Student Council raised $1,000 for MS.

UNIQUE WAYS OF GIVING • The West Salem High School Student Council organized a run/walk benefit, a pancake breakfast and a silent auction to raise funds for the National MS Society-Wisconsin Chapter. Proceeds (along with extra money from their Student Counsel account) added up to a $1,000 donation. A few students know people impacted by the disease, making the gift even more meaningful.

Each year Ripon Printers sends holiday cards to customers and offers to make a donation in the customer’s name to one of six charitable 4 organizations. Employee Carol 1 20 Cluppert explained that a former employee had been diagnosed with the disease. More than 40 clients chose a donation to the National MS Society for a total of $175. S

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Scott Wittman was diagnosed with relapsingremitting MS five years ago on his 31st birthday. An avid volleyball player, he decided that year to organize a volleyball tournament in Appleton to raise money for MS research. His most recent tournament, in December, was his best yet – raising $2,500. He said the donation is “in the hope of finding a cure or better and safer drugs to stop the progression of the disease.”

Wisconsin Congressman Sean Duffy (WI-7) met with (left to right) Wisconsin resident Amy Rowell and National MS Society-Wisconsin Chapter Board member Anne Brouwer during the Society’s Public Policy Conference in Washington, D.C.

PUBLIC POLICY CONFERENCE Wisconsin Chapter representatives joined other MS activists March 10-12 for the Society’s Public Policy Conference in Washington, D.C. There they visited Capitol Hill to urge Congress to:

Support funding for MS research through the National Institutes of Health, Congressionally Directed Medical Research Programs and the FDA.

Cosponsor a bill to create a separate benefit in Medicare to protect access to complex rehab power wheelchairs for those with progressive MS.

Show their commitment to finding policy solutions to those affected by MS by joining the Congressional MS Caucus. MS Connection | 9


Erasing Medicare’s Improvement Standard Make sure your services aren’t denied

The Medicare Improvement Standard case, Jimmo vs. Sebelius, was approved in January 2013 and made immediately effective. The ruling meant that the determining issue regarding Medicare coverage for skilled services is whether the service is needed, not whether the Medicare beneficiary will “improve”. This applies to nursing and therapy services provided both in home and skilled nursing facility settings.

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nfortunately, sufficient education about the change and updates to the necessary approval processes weren’t communicated as quickly or thoroughly as needed, leaving many people to have Medicare coverage of their skilled maintenance nursing or therapy denied based on the improvement standard when in fact it should have been covered.

Campbell, PT, MSCS, ATP, from Dean Neurological Institute & Spine Center in Madison. “Before the Jimmo decision, if a client failed to improve, or got progressively worse, Medicare would not pay to continue therapy. Many patients still demonstrate a need for skilled therapy, and now [those services are covered].”

Luckily a re-review process created under the settlement allows for another review of claims that were denied based on the Improvement

WHAT TO DO IF YOU HAVE BEEN DENIED A form to initiate a re-review and details on the process itself are available on the Centers for Medicare and Medicaid Services website (CMS.gov) and on the Center for Medicare Advocacy website (medicareadvocacy.org). The deadline for seeking re-review is either July 23, 2014 or July 23, 2015, depending on when a claim denial became final.

“The big change is that the therapist no longer has to demonstrate functional improvement to justify continued skilled care.”

-C  urt Campbell, PT, MSCS, ATP Standard. Some restrictions may apply, but the re-review decisions will be based on the revised version of the Medicare Manual, which makes it clear that Medicare coverage can be available for skilled nursing or therapy to maintain a person’s condition. “The big change is that the therapist no longer has to demonstrate functional improvement to justify continued skilled care,” said Curt

MS Connection | 10

Going forward, be sure to speak with your skilled services providers to make sure they know about the change with the Improvement Standard and can advocate for the coverage that you are due. If you have further questions or need more information, contact the National MS Society at contactusnmss@nmss.org or call 262-369-4400 (toll-free from inside Wisconsin 800-242-3358).


MS Snowmobile Tour Revs Up to the $7 Million Mark

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ith plentiful snow cover, majestic scenery and the camaraderie of more than 120 fellow riders dedicated to the same cause, conditions for the 2014 MS Snowmobile Tour could hardly have been better. “Thanks to the riders, volunteers and family members who made it a weekend to remember, and to everyone who donated,” said Mark Schmidt, MS Snow Tour committee co-chairman. “With their help, we’re closing in on one million miles of accumulative riding and $7 million raised for MS over the course of the Tour’s 31-year history.”

Help reach the $7 million milestone! Visit MSsnowmobiletour.org or call 262-369-4400 to make a donation and to register for next year’s Tour.

Guides and tail gunners who volunteer their service made sure all riders safely covered 250 miles of groomed northern Wisconsin trails during the weekend.

THANK YOU, MS SNOWMOBILE TOUR SPONSORS! The 30 first-time participants at this year’s Tour included father and daughter duos Michael Ignasiak and Rachel Ignasiak of Green Bay, Wis., and Kristin Tomcheck and Jay Tomcheck of De Pere, Wis.

The 2015 MS Snowmobile Tour will return to Lac du Flambeau January 22-24, and registration is already open. Go to MSsnowmobiletour.org or call 262-369-4400. First-time participants can sign up for FREE with the Ticket to Ride. MS Connection | 11


‘I WALK FOR YO

MS Connection | 12


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Angela Docherty knows the effect Walk MS can have on someone living with the disease because she is that someone — going from daily injections when she was first diagnosed with relapsing-remitting multiple sclerosis in 2002, to being able to now take medication orally instead. “MS research has come a long way. I injected subcutaneously and intramuscularly for many years. Instead of dealing with numerous side effects, and preparing for shots, I am now taking an oral twice daily! “I was diagnosed with MS 12 years Unbelievable!” said the wife, mother and 16-year Walk MS veteran, ago. I am why I walk. My sister was adding that she is grateful for the diagnosed over 15 years ago. She is why I walk. For my friends with MS, tremendous research breakthroughs — made possible in part by those I walk for you.” who donate to Walk MS — that have - Angela Docherty led to the advancements in treating the most common forms of MS. Yet even with the breakthroughs that have led to improvements for her, Docherty has no plans to stop participating. She has a number of reasons not to, beginning with her older sister, Diana, who is living with secondary-progressive MS. Both sisters were diagnosed in their mid-20s. “Because I was familiar with my sister’s disease — now mine — I knew we had to fight it together,” Docherty said. Docherty signed up for her first walk in 1999 and has done the Waukesha, Sheboygan, Milwaukee and Madison walks with her husband, son, daughter, mother, father, mother-in-law and father-in-law. They go by the team name Code Orange. Together they have raised more than $7,000 (from 1998-2013). “I share this important mission every year with my family,” Angela said. “I was diagnosed with MS 12 years ago. I am why I walk. My sister was diagnosed over 15 years ago. She is why I walk. For my friends with MS, I walk for you.” Angela (middle row at right) and her family make up the team Code Orange. They will be part of Walk MS: Madison on May 4. MS Connection | 13


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.

MS Connection | 14

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).

MS Connection | 15


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

MS Connection | 16


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.

• • • • • • • • • • •

$25,000 Ladish Co. Foundation $10,000 Edward U. Demmer Foundation $7,500 Acorda Therapeutics, Inc. $5,000 David V. Uihlein Foundation $5,000 Lux Foundation, Inc. $5,000 West Bend Mutual $4,500 Briggs & Stratton Corporation Foundation Inc. $4,214 Novartis (Advanced Health Media LLC) $3,400 Donald and Joanne Krause Family Foundation $2,000 Barrow Medical Foundation $1,030  Greater Milwaukee Foundation David C. Scott Foundation Fund

• $1,000 Fidelity Charitable Gift Fund – Schiestle Family Fund • $500 Sub-Zero Wolf Foundation Inc. • $500 Perkins Coie Foundation • $500 Questcor Pharmaceuticals, Inc. • $300 Greater Milwaukee Foundation’s Colton Charitable Fund • $300 Telly Foundation, LTD • $186 Leeds Charity Fund • $100 Madison Community Foundation’s Thomas G. and Karen C. Ragatz Designated Passthrough Fund • $100 The Schoenauer Family Foundation, Inc. • $50 James and Nancy Youngerman Donor Advised Fund of the Jewish Federation of Madison

In total, more than $75,000 was received in gifts and grants from October through December. 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.

AUTOS-4-MS

Help drive MS away – donate your vehicle today!

When you donate your car, truck, motorcycle, boat or trailer to the National MS Society, you can feel good knowing 100% of the proceeds go directly toward benefiting people with MS. Proceeds fund vital research into the cause, cure and treatment of MS as well as programs and services for people living with MS.

To start the donation process: • Call our toll-free number 877-672-8864 or submit the electronic donation form found at AUTOS4MS.org • A towing company will contact you to schedule your pickup • A receipt will be mailed to you after the completed sale transaction of the vehicle.

For answers to all your questions, please visit AUTOS4MS.org or call 877-672-8864 ADVERTISEMENT

MS Connection | 17


Year in Review

Many Do It Yourself Fundraisers are held throughout Wisconsin each year for multiple sclerosis raising awareness and funds in fun and creative ways. Businesses do so with jeans days and bake sales, schools have coin wars, and individuals hold concerts, golf outings and more. All these events, their organizers and those who participate truly make a difference. More than 115 DIY events were registered with the Wisconsin Chapter in 2013. The events are listed here, along with the name of the organizer and the dollars raised as reported to the Chapter.*

JANUARY 8th Annual Help Find-A-Cure for MS Benefit Ben Romenesko RAISED $26,000 MS Snow Rally Beer Bust and Silent Auction Dave and Deb Gnotke RAISED $2,322

MS Raffle Fundraiser at Bob’s Riverview Maria Phelps RAISED $2,536

Take a Shot at MS Casual for a Cause Day Unified Catholic Schools RAISED $1,411

Kids Bowl-A-Thon for MS Research Trina Giese RAISED $1,197

Johnson Controls Jeans Day Verna Lou Moschella RAISED $2,230

1st Annual MS Volleyball Tournament David Koch RAISED $970

DIY Success Story Maybe it was the lure of a “bottomless glass,” but Dar’s Pub was packed for the MS Snow Rally Beer Bust and Silent Auction. Run by the Gnotke family, the proceeds were applied toward their fundraising minimums for the MS Snowmobile Tour.

MS Connection | 18

For more information about holding your own DIY Fundraiser in 2014, contact Kristin Raeber at kristin.raeber@nmss.org or 262-369-4436.

FEBRUARY AG Drive Chili Cook-off Terri Ellinger RAISED $207 Arrowhead High School Girls Soccer Fundraiser Trina Bower RAISED $10,155 11th Annual Rabbits Unlimited LTD Rabbit Hunt Don, Tom, and Alan Bell RAISED $30,000

* DIY Fundraisers and totals raised as reported to the Wisconsin Chapter as of February 1, 2014. Some events did not report their final results.


Year in Review

Miracle Minute Menomonie High School Student Council RAISED $400 Dance for a Cure Paul Schneider RAISED $536 Lena High School Girls’ Basketball Game and T-shirt sales Lena High School Girls’ Basketball Team RAISED $1,000 Hip Hop to Stop MS Staci Both RAISED $401

MARCH Royal Credit Union Jeans Day and Bake Sale (Eau Claire) Traci Aumueller RAISED $1,058 Bon Ton Stores Jeans Days Mary McGrath RAISED $624 5th Annual Family Fun Day featuring Texas Hold’em MS Funderaiser Connie Plier RAISED $22,425 11th Annual Blarney Bash Ashley Gorski RAISED $30,111

DIY Success Story The 3,000-mile MS Run the US relay brought together 14 runners who ran the equivalent of a marathon a day to cross the country and raise money for MS research. The organization was founded by Ashley Kumlien in honor of her mom, Jill.

Charity Jamboree – Music Can Beat MS Steve and Jane Schmieding RAISED $7,345

West Salem Run/Walk West Salem High School Student Council RAISED $1,000

Shamrock Shuffle & Supper 5K Run/Walk Jill Jones RAISED $4,621

6th Annual We’re Egan to Cure MS Fundraiser Jenny Egan RAISED $6,558

Share Night at Culver’s (Spring Green) Stacie Prochaska RAISED $187

APRIL

Dining to Donate Applebee’s (Madison) Stacie Prochaska RAISED $70

Marine Credit Union Silent Auction RAISED $834 Sargento Foods Dress Down Month RAISED $1,188

“Irish” Beef Stew Supper and Blind Auction Judy Goeckermann RAISED $2,954

Uno’s Chicago Grill – Dough Raiser RAISED $42

Chippewa County Department of Public Health Casual Friday RAISED $16

MS Society Bake Sale Fundraiser Kettle Moraine High School Sociology Class RAISED $62 MS Connection | 19


Year in Review

E-Race MS 5k/10k Run/Walk in Madison and Nashotah Becky Hall RAISED $2,125

Dining to Donate at Applebee’s (Wauwatosa) Zaq and Jake Ziemba RAISED $73

Eat for MS at 5th Quarter Bar & Grill Kate Skogen RAISED $272

New England Financial BBQ Lunch Carrie Serocki

MS Run the US – Relay Ashley Kumlien, MS Run the US Inc. RAISED $180,000

Rock’n MS Mitchell Maloney RAISED $374

DIY Success Story The Apple Holler MS Orchard Walk & Charity Fundraiser in Sturtevant included an all-youcan-eat breakfast, entertainment, one-mile walk through the orchard and a bag of apples, all for $20. This year’s event will be on Aug. 23.

2013 Strike Out MS Kate Bertram RAISED $11,904

6th Annual Open House Karen Minor RAISED $1,028

1st Annual Doubles Pool Tournament for MS Angie Bryant RAISED $681

Golf Fore MS Victor Erickson RAISED $470

Slices Bar & Grille Charity Event and Meat Raffle Alan Schumacher RAISED $335 MS Connection | 20

Walk with Strength Zach Mielke RAISED $6,000

MAY Pampered Chef Fundraiser Shelley O’Leary RAISED $91 MS Fundraiser – Mondovi Sneakers Rose Sabelko RAISED $1,259 Premier Bank Cinco de Mayo Party RAISED $87 Zumbathon for MS Kristen Quam RAISED $200 Rebels with a Cause Grill Off Laura Honish RAISED $20 RD Benefit Ride Rick Olson RAISED $1,100 Wells Fargo Collection Day (Brookfield) Jim VanDeven RAISED $300 O’Hare Group Charitable Clay Shoot at Warn Valley Sportsmen’s Club John O’Hare RAISED $3,275 9-Pin Tap Bowl-A-Thon Julie Madden RAISED $3,454


Year in Review

Fox Valley Road & Track Classic XII Roy Fine RAISED $2,000 Frank’s Newport Anniversary Party Frank Creed RAISED $225

JUNE Brew at the Barn Christin Harding RAISED $705 9th Annual Neipert Golf Outing Alan and Nicki Neipert RAISED $1,350 Screws 2 MS Benefit Terri Formella 3rd Annual Bag MS Bean Bag Tournament Joseph Fangmann RAISED $2,350 Walk MS Butternut Donna Lohman RAISED $1,585 Wisconsin Leap Training Conference Fundraiser Lisa Bell RAISED $400 Rummage and Bake Sale for MS Alicia Osiecky, Amy Zumach and Colleen Zwitter

Jamcamp for MS Corissa Klages Burpies for a Cause Jared Markiewicz RAISED $2,675 Gamble Scramble “Fore” MS Dwayne Sweeney RAISED $5,609 3rd Annual Reel Brothers Harley Davidson Ride-Cows, Curves & Chrome Robyn Reel RAISED $1,127 Jamaican Jerk Chicken Fundraiser Lori DeNoble RAISED $5,268 8th Annual Damn Yankees Watering Hole MS Benefit Ron Scherwinski RAISED $5,420

Thomas Jefferson Middle School Leadership Class Bake Sale Leadership Class RAISED $47 Independence State Bank Jeans for Charity (Independence) RAISED $175

JULY Simply Sweet Dinner Caroline Pollock-Cho Make a Difference Monday at Quaker Steak & Lube (New Berlin) Maggie Sonnemann RAISED $330 Rookies Bar Golf Outing to Fund MS Research Pat and Lisa Haack RAISED $1,824

DIY Success Story Perfect weather and nearly 50 boats helped make the 2013 Annual Minocqua Antique and Classic Wooden Boat Show a big success. Concessions, T-shirts and party beads were sold to raise money for the event’s charity of choice, the National MS Society. © DEAN ACHESON

MS Connection | 21


Year in Review

7th Annual Fighting MS Golf Scramble Karen Pagel RAISED $10,020 Carrier Insurance Agency Jeans Day Randy Eddy Sr. RAISED $1,000 WEA Trust Community Services Committee Brat Sale Nancy Nilsen RAISED $485

DIY Success Story The third annual Milton Mud Challenge was promoted as having “more mud, more obstacles, more fun and more party than ever.” That included food, drinks, live music, raffles and kids’ course in addition to the 5K obstacle course.

Greater Duck Creek Open 24th Annual Croal Open for MS Judy Buchta RAISED $300 Dan, Mike and Tim Croal RAISED $38,428 Orange Leaf Fundraiser Maggie Sonnemann TNT Lanes Bowl for a Cure RAISED $113 Kelvin Kimball RAISED $933 Pedal & Party in Pardeeville with a Purpose Harry and Kay Lum RAISED $4,570 2013 Annual Minocqua Antique and Classic Wooden Boat Show Gordon Moore, Al Hanley and Pete Ekstrom RAISED $6,873 A Drive for MS-Bogey Bare MS Scramble Ken Bare RAISED $7,129

MS Connection | 22

AUGUST

9th Annual Apple Holler MS Orchard Walk & Charity Fundraiser Sheri Gavin RAISED $12,146 Auto Paint & Supply Car and Bike Show for MS John Scherwinski RAISED $5,284

Nelson Global Products Golf Outing Susan Ullman RAISED $960

Milton Mud Challenge Heidi Crull RAISED $31,913

Scramble Fore MS Golf Outing Debbie Knudson

Northwestern Bank Casual Day Fundraiser RAISED $66

Pat’s Par-Tee 13th Annual Ladies Scramble Pat Klotz RAISED $1,796 7th Annual JMO “A Drive for MS” Golf Outing Heidi Erdmann RAISED $2,600

Annual Rummage Sale to Benefit MS Connie Plier RAISED $2,726


Year in Review

SEPTEMBER 4th Annual MS Golf for a Cure Martin and June Hillert RAISED $27,576 ROUGH Tailgate Fundraiser ROUGH Sportswear RAISED $1,000

4th Annual Tee’d Off at MS David Blavat RAISED $2,500 Mukwonago High School Annual Staff Run/Walk Bruce Lammers RAISED $305

Golf MS Wendy McCarthy RAISED $2,620

Dogleg Open Golfing to Support MS Dylan Guendert RAISED $3,800

7th Annual Ken Fest Gina Felten RAISED $2,700

Shaleigh’s 2nd MS Bike Ride Shaleigh Fitzpatrick RAISED $840

Mackville Tractor Poker Run and 50/50 Raffle Al Reis RAISED $890

Take the Reins for MS Becky Perron RAISED $4,190

Fight MS Golf Outing Carla Knitter RAISED $1,575 Ynot II Annual MS Benefit Shaleigh Fitzpatrick RAISED $935 Ride for Clyde Dawn Janisch RAISED $6,520 Stafford Rosenbaum Casual for a Cause Day RAISED $90

OCTOBER Trigs Brat Fry Stan Panek RAISED $157 Fall Festival Elizabeth Potter RAISED $475 Lynn Ann’s Spookwalk Wayne Newby RAISED $850 Beanbag & Horseshoe Tournament Travis Kluewer RAISED $800

NOVEMBER 4th Annual Generation OptiMiStic Miller-Coors MS Benefit Kim Muszynski RAISED $5,181 Oregon Rotary Club Sunshine Fund Collection Oregon Rotary Club RAISED $232 2nd Annual Perry/Vick Bowling Tournament Kevin Vick RAISED $5,000 Turkey Trot 5K Run/Walk Denise Johnson and Kris Benedict RAISED $1,000 Tower Up for MS Joni Nogay RAISED $25

DECEMBER Fifth Annual Soiree for Success: A Fundraiser to Fight MS Shayla Rosen, Katie Walsh, Jen Tarantola and Jill Frank RAISED $28,641 Hayward Community Credit Union Casual Fridays Kristin Tingo RAISED $40

MS Connection | 23


NON-PROFIT ORGANIZATION U.S. POSTAGE

PAID

A Publication of the National Multiple Sclerosis Society-Wisconsin Chapter

1120 James Drive Suite A Hartland, WI 53029

MILWAUKEE, WI PERMIT NO. 2868

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

®

REGISTER TODAY walkMSwisconsin.org

Wisconsin Chapter: 262-369-4400 Wisconsin 2014

APPLETON Lawrence University Sunday, April 27 CEDARBURG Cedarburg High School Saturday, May 3 DE PERE West De Pere High School Sunday, April 27 EAU CLAIRE UW-Eau Claire Saturday, April 26 FOND DU LAC Marian University Sunday, April 27

Walk MS connects people living with MS and those who care about them. This community event raises critical funds to support life-changing programs and cutting-edge research.

JANESVILLE Palmer Park Sunday, May 4 KENOSHA-RACINE Mahone Middle School Sunday, April 27 LA CROSSE La Crosse Center Saturday, April 26 MADISON Warner Park Sunday, May 4 MARSHFIELD Wildwood Park Saturday, April 26

NEW

!

MENOMONEE FALLS Menomonee Falls High School Saturday, May 3 MILWAUKEE Summerfest Grounds Briggs & Stratton Big Backyard Sunday, May 4 OCONOMOWOC St. Paul’s Lutheran School Saturday, May 3 OSHKOSH Lourdes Academy Sunday, September 14 PLATTEVILLE UW-Platteville Sunday, April 27

NEW

!

RHINELANDER Rhinelander High School Saturday, September 6 SHEBOYGAN Blue Harbor Resort Sunday, April 27 STEVENS POINT UW-Stevens Point Sunday, September 14 WAUKESHA Frame Park Sunday, September 14 WAUSAU Patriot Center Saturday, April 26 Check-in: 9 a.m. Walk Begins: 10 a.m.

BE INSPIRED. GET CONNECTED. WALK MS.


Ms Connection Spring 2014 Issue