Summer 2009
Bold Move Wisconsin’s Schneider Summits Mt. Everest
Wisconsin Board of Trustees
Michael Lutze, Vice Chair Ernst & Young Kenneth Minor, Vice Chair Sonic Foundry, Inc.
Jess Levin Bank of Elmwood Karen Minor Community Advocate Bruce Olson The Marcus Corporation Shelley Peterman Schwarz Meeting Life’s Challenges
Patricia Ackerman, Treasurer A.O. Smith Corporation
David Raysich Plunkett Raysich Architects
Robert Sowinski, Secretary Diversified Insurance Services, Inc.
Patricia Raysich Community Advocate
Colleen Kalt, President & CEO National MS Society Wisconsin Chapter Carrie Raymond Bedore Carrie Raymond Bedore, LLC
David Rodgers Briggs & Stratton Corporation
Alyson Zierdt, Chair Community Advocate Martin McLaughlin, Past Chair Reinhart Boerner Van Deuren, S.C.
Robert Buhler Open Pantry Albert Elser II Community Advocate Robert Engel M&I Bank
James Rose Virchow, Krause and Company LLP John Steinhafel Steinhafels Furniture Maureen Steinhafel Community Advocate Jeffrey Steren Steren Management/McDonald’s Robyn Turtenwald Community Advocate
If you or someone you know has MS: Studies show that early and ongoing treatment with an FDA-approved therapy can reduce future disease activity and improve quality of life for many people with multiple sclerosis. Talk to your health care professional or contact the National MS Society at nationalmssociety.org or 1-800-344-4867 to learn about ways to help manage multiple sclerosis and about current research that may one day reveal a cure. The National MS Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The National MS Society assumes no liability for the use of contents of any product or service mentioned. Information provided by the Society is based upon professional advice, published, experience and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. The National MS Society recommends that all questions and information be discussed with a personal physician. The National MS Society is committed to seeing a world free of MS.
©2009 National Multiple Sclerosis Society - Wisconsin Chapter
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Big Bold Dreams Never let go of your dreams. According to Lori Schneider, the first person with multiple sclerosis to summit Mt. Everest, that’s one of the vital lessons she’s learned since being diagnosed 10 years ago. While most of us may never set foot atop any of the magnificent mountains Lori has climbed, we can be inspired by her determination. We can pledge to continue to fight for our dream: A cure for MS. Dr. John Fleming and Colleen Kalt We all want a cure. We know that to find a cure, we at the MS Luncheon in Madison. need to do everything we can to raise money to help fund research. Similar to Lori, if we’re going to accomplish our dream, we need to be bold. Lori says that MS and mountain climbing are similar in that you must concentrate on taking one step at a time and congratulate yourself with each step. The Wisconsin Chapter took a big step in June when we hosted the inspirational MS Luncheons in Milwaukee and Madison. With your incredible support, these programs generated nearly $135,000 for MS research. And that’s something to celebrate. Now it’s time to take the next step toward our goal of raising $300,000 for MS research before September 30. It’s a bold step – raising $165,000 in three months – but it can be done. Consider the many ways you can help: • Boldly support Bike MS or Challenge Walk MS: participate, volunteer or pledge and make a difference. • Boldly contribute every dollar you can to MS research: $5 or $5,000 – every contribution counts. • Boldly hold a community event to raise funds for MS research. • Boldly ask everyone you know to help. As Lori showed us on May 23, 2009 when she stood on top of Mt. Everest – all things are possible. Let’s be bold. Let’s be determined. Let’s find a cure for MS. Sincerely,
Colleen G. Kalt President & CEO P.S. If talking with a researcher will help seal your MS donation, call me and I’ll make the arrangements.
MS CONNECTION: Summer 2009
Wilkey Recognized for Leadership
30 Wisconsin Students Receive MS College Scholarships The Wisconsin Chapter is pleased to award a financial scholarship to 30 top Wisconsin students to help them start their college careers. This is the fifth year of the MS College Scholarship program, with the Chapter awarding more than $200,000 in that time to 131 students. The 2009 Scholarship recipients were recognized at the June 17 MS Luncheon in Milwaukee.
The list of Wisconsin scholarship winners is shared with the National Multiple Sclerosis Society, where
The Selection Process To qualify for a scholarship, high school seniors or graduates of any age must have a parent with multiple sclerosis or have MS themselves. Additionally, the applicants must Joining Mathew Jones to celebrate his scholarship award are, from be attending an accredited postsecondary left: LuAnn Luedtke, Patricia Jones, Elizabeth Curtis and Sarah Jones. school for the first time. All applicants are initially evaluated by Scholarship America, finalists are reviewed for exceptional scholarship, a national nonprofit student aid organization. Among need, character and community service. This year two other criteria, applicants are judged on demonstrated students – Jennifer Jendusa and Andrew Scrima – were need for financial named Top Scholars by the National MS Society and aid, academic will receive additional funding. Dillon Grose was also record, leadership recognized by the National MS Society for academic and an essay performance and will receive additional scholarship about the impact funding. of MS on their life. Qualified Establish a Scholarship Endowment applications are The Wisconsin Chapter generated more scholarship forwarded to applications this year than any other chapter in the the MS College country. Applicant numbers have grown from 10 in Scholarship 2005 to 59 in 2009. Committee in Your contributions to the Wisconsin Chapter’s MS Wisconsin for College Scholarship program help ensure that MS will final selection. not stand in the way of a college education. In addition This year’s to individual contributions, donors are encouraged to Wisconsin consider funding endowed scholarships with a minimum Chapter Susan Wilkey’s longtime leadership gift of $25,000. For more information about making a Scholarship earned her 2008’s National MS donation – or to secure information about the 2010 Committee Lifetime Achievement Award. MS College Scholarship program – please contact volunteer Wilkey has also established a Meghan Schnabl at 262-369-4420 or e-mail members were $25,000 endowment benefitting the meghan.schnabl@wisMS.org. Molly Walsh, Wisconsin Chapter’s MS College Wendy Rusch Scholarship program. and Susan Wilkey. TOLL FREE NUMBER 1 800 242 3358
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2009 Wisconsin Chapter College Scholarship Recipients “I found a totally new perspective on “Love is what life this year keeps my family when my mom stable during was diagnosed the tough with MS.” times.” Claire Anhalt Christina Behrens Shawano, WI Muskego, WI UW-Whitewater Notre Dame
“Even though this “I don’t look disease has taken at MS as a things away from my mom and I, negative thing the disease also because it is just has shown me a bump in the that ‘you need road.” to pull yourself up by your own Elizabeth Budelman Katerina bootstraps’.” Fond du Lac, WI Borkhus-Veto St. Norbert’s College Racine, WI, College of Ozarks
“I know scientists “MS…has made “Having a “I’m not sure are toiling at me stronger, not to parent with where I would finding a way to take anything for MS we learn be without my cure or reverse granted, and know to cherish the mom. She is a MS, but for me what I want to do hours, the big impact and it will never be in life.” minutes, and the she keeps my fast enough.” seconds of every family going.” Amber Dunnum moment we Ross Fassbinder Elizabeth Fijalkiewicz Stephanie Frisch have.” Cashton, WI Oak Creek, WI Chetek, WI Antigo, WI Winona State University Winona State University UM-Duluth UW-La Crosse “Even though this “Upon horrible disease completing high is something that school, I would has hurt our like to attend a family deeply, I four-year college believe that in and receive some aspects it a degree in has brought us all nursing.” Dillon Grose Zygmunt Gross closer together.” Chilton, WI Pickerel, WI UW-Green Bay Franciscan University of Ohio “I only hope that I can be as selfless a mother, co-worker, teacher and wife (as my mother).” Kimberly Hanson Baraboo, WI UW-Platteville
“... I remain “... life with “My mother never gives up hopeful that someone who on trying to beat a cure for MS has MS leaves MS and this, in will be found; no room for turn, gives me hopeful that one indecisiveness, the courage to day my Papa cowardice, or an persevere against and others inability to obstacles in my like him will face fears Elizabeth Huston Leah Jagodzinski own life Jennifer Jendusa regain their as well.” Stevens Point, WI and challenges Holmen, WI Hartland, WI independence...” head-on.” UM-Twin Cities UW-La Crosse UW-Madison
“My former “MS has teacher once told provided my me that we have life with an been put on this incredible earth to give back in any way journey of ups that we can, and downs.” and that is just what I Lindsay Johnson Dayleen Johnson plan to do Evansville, WI Evansville, WI UW-Green Bay with my life.” UW-Stevens Point
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Kristin Hagen Sun Prairie, WI UW-Madison
“ Living with “I do what I a mother who can, like has MS has Bike MS, taught me to be because it’s one thankful for all way I can help of the activities towards a cure.” I am able to be a part of.” Rebecca Hall Hartland, WI Marquette University
JOIN THE MOVEMENT: wisMS.org
“I want to get a degree in elementary education and then join the Peace Corps.” Trevor Jones Kenosha, WI UW-Milwaukee
“The day that my parents returned from Madison with my dad’s diagnosis was a day I’ll never forget.”
Matthew Jones Janesville, WI UW-Rock County
2008 Award Winners
Where Are They Now? “I believe my father’s MS diagnosis has only made me stronger, more resilient and more determined... to take the gifts I Tara Mayer have been given Erica Mohorko Sheboygan, WI Beloit, WI out into the world.” UW-Green Bay UW-Madison
“I have accepted the fact that we can’t do all that we want and we are working around it to still have a normal and healthy relationship.”
“MS is an “Nearly a unpredictable decade has disease that offered the always leaves disease an room for opportunity to uncertainty, define me as a so my family person, shaping continues to my being.” Kyle Muladore Margaret Oliver prepare for Three Lakes, WI Cedarburg future Vancouver Film School Stanford University obstacles.” “I know that “...it (MS) I am a lucky may have been a blessing in person and I disguise, because want to do the for me, it has best I can to brought out a give back to the better side, a more National MS productive side, Society.” Austin Schwefel a side better Andrew Scrima Oconomowoc, WI prepared for Waukesha, WI UW-Stevens Point Marquette University life.” “Getting a degree would be a huge deal to me. This is a goal I have set for myself and Ryan VanDenBerg I know I will Kaukauna, WI obtain.” UW-Milwaukee
Joshua Wurtz Loyal, WI UW-Madison
“She (my mom) never complains, never ever. If she isn’t an outstanding and phenomenal person, I don’t Kirsten Wellna know who is.” Sheboygan, WI Marquette University
“We have grown “Ever since my closer as a mother was family…Now diagnosed with we spend more MS, my family time together, has been trying whether it just to get her to is to watch a realize how movie, play cards and games or Brooke Zimmer important it is for her to think just hanging out De Pere, WI together.” UW-Oshkosh about herself first.”
The Wisconsin Chapter caught up with several of last year’s scholarship winners to find out where they are attending school. Together with this year’s winners, the Wisconsin Chapter has presented 131 students with college scholarships in just five years. Vani Barry UW Eau Claire
Leah Walker UW Oshkosh
Anna Gibson Pomona College
Cassandra Anderson UW Richland Center
Elizabeth Schilder Marquette University
Bradley Konkel UW La Crosse
Melanie Walter Winona State University
Amalia Santos St. Mary’s University, MN
Andrew Tinlin Concordia University
Marga Schoch Benedictine College, Kansas
Nicole Seibert Viterbo University
Ashley Schubert UW Stout
Justin Haman MATC-Milwaukee
Jordan White University of Kansas
Meghan Birt UW Platteville
Cortney Wright UW-Stout
Marissa English North Central Tech. Institute
Olivia Sheldon Gateway Technical College
Emily Combs Nicolet College
Danielle Govek Illinois Institute of Art
Jenna DeCleene University of HI - Hilo
Meaghan Hackett UW Richland Center
Myles Gikling MATC-Milwaukee
Adam Heun MATC-Milwaukee
Debra Haggerty UW-LaCrosse
Laura Johnson UW-Madison
Laura Hermanns UW-Madison
Nicole Laufenberg UW-Milwaukee
Kyle Liesener Milwaukee School of Engineering
Ryan McDowell Bethel Unviversity Jordan Johnson UW-Plateville
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Coming Soon to MyMSMyWay.com
New Online Brain Games Created for People with MS The National Multiple Sclerosis Society announced that free online games designed specifically for people with multiple sclerosis will soon be available at www.MyMSMyWay.com. The programs called MyBrainGames, were created by the MS Technology Collaborative, an alliance of Bayer HealthCare Pharmaceuticals, Microsoft and the National Multiple Sclerosis Society under the direction of a team of leading healthcare professionals specializing in MS and cognition, as well as members of the MS community. Approximately 50 percent of people living with MS develop cognitive challenges, often in the areas of processing speed, working memory and complex attention. According to the National Multiple Sclerosis Society, MyBrainGames will provide a series of fun and interactive cognitive challenges for the MS community. “Many times our patients are doing well physically but
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JOIN THE MOVEMENT: wisMS.org
they may still struggle with cognitive ability,” said Dr. Stephen Kirzinger, director of the Multiple Sclerosis Program at the University of Louisville and one of the healthcare professionals who oversaw development of the MyBrainGames. “This presents the first step in assessing whether games can help counter the cognitive challenges of MS.” The games challenge the player’s processing speed, working memory, attention and task switching ability. MyBrainGames was also developed with technical modifications to ensure that the games are accessible to the MS community. Check www.nationalmssociety.org frequently to learn more about the latest multiple sclerosis research updates. The Society is a driving force of MS research, investing $600 million into prevention, treatment and a cure. Paid Advertisement
Door County Challenge Walk MS September 18-20
Life-Changing Experience: Walk, Volunteer or Pledge Picture yourself in Door County this fall. Walking, Super Crew Volunteers. If you’re not a walker, laughing and having a great time with friends old and Super Crew may be for you. You’ll be assisting the new. Three days of camaraderie and optimism in one of Challenge walkers right up to the finish line. The Wisconsin’s most scenic destinations. Then picture the results – significant contributions that will bring life-changing discoveries and programs to people living with multiple sclerosis. Challenge Walk MS is a three-day, 50- or 30-mile experience in beautiful Door County that tests your strength and spirit while making an extraordinary difference in Before starting the inaugural 2008 Challenge Walk MS, last year’s participants posed the lives of people living for a commemorative photo. Fifty- and 30-mile routes are offered in 2009. with MS. Amy Zynda, a participant in the inaugural 2008 Challenge Walk $1,500 minimum pledge and $125 registration fee are MS, said, “The setting was beautiful, the volunteers required. Jobs may include providing medical support, unfailingly cheerful and encouraging and the other driving a SAG wagon, assisting at rest stops, helping walkers so very inspirational.” with registration and bus loading/unloading. Super This year’s Crew members also receive overnight lodging, Challenge Walk MS meals and route support throughout the event. will be held September 18-20, 2009. There Crew Volunteers. If you’d prefer to help with are four levels of a variety of tasks, join the Crew. No registration participation: fee or minimum pledge is required. (Overnight lodging and meals are not included.) Walkers. Start training for the walk Pledge. You can support the Challenge Walk now as you begin to MS with a generous pledge to help the Wisconsin gather pledges. The Chapter meet its $225,000 goal. Challenge minimum pledge per Walkers achieved last year’s goal; we know you walker is $1,500 plus Sue Pliska, left, walks with her daughters can do it again in 2009! a $125 registration fee. Emily Riege and Megan Jean. Remember: Challenge Register and pledge online at wisMS.org or call Walk MS is a fully supported event. That means while 800-242-3358. Sponsorship information is available by you train and fundraise, the Wisconsin Chapter handles contacting Laurie Schill at laurie.schill@wisMS.org or everything else and will take care of your overnight lodging, 920-423-3403. meals, route support and more throughout the event. TOLL FREE NUMBER 1 800 242 3358
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Join the Lawry Circle
Membership Demonstrates Commitment to Society’s Mission The Lawry Circle honors donors who have informed the National Multiple Sclerosis Society of their intention to help create a better future for the MS community by making a deferred gift. Examples of deferred gifts include: bequest intentions in a will, charitable gift annuities, charitable trusts, designating the Society as a beneficiary of a retirement account, designating the Society as a beneficiary of a life insurance policy or the donation of a policy. If you name the National MS Society in your estate plan, please contact the Wisconsin Chapter so that we can appropriately recognize your dedication. For more information, please contact Denise Jendusa at 262-369-7166, 800-242-3358 or e-mail denise.jendusa@wisMS.org. Wisconsin Chapter Lawry Circle Members Anonymous- 2 Mr. Jeffrey A. Arndt Mrs. Kendra M. Arndt The Rev. Charles R. Brooks Ms. Anne Brouwer Ms. Kathleen Conine+ Ms. Lillian Cowan+ Mrs. Judith A. Dereszynski Ms. Dolores Dornoff+ Ms. Leslie Farrell+ Ms. Margaret Formanek+ Mr. LeRoy Hering Mrs. Carol Hering Ms. Sandra A. Hills Mr. William C. Hoffmann Ms. Cheryl Keenan+ Mr. Douglas E. Kiefer+
Ms. Pauline Kiefert+ Ms. Jane Knebes+ Mr. Michael Lutze Mrs. Lori Lutze Mr. Glenn E. McCray Mrs. Barbara McDonald Ms. Margaret McManimon+ Mr. Herbert Myers Mrs. Ronda Myers Mr. John W. Nelson+ Mrs. Dorothy J. Nelson+ Ms. Charlyne A. Perrine Ms. Sharon Pezewski Mr. Felix Pulgram+ Ms. Dolores M. Rampalski Mrs. Arlene L. Rentmeester Mr. Michael L. Rentmeester
Mr. Thomas H. Robinson Mrs. Arita “Peach” A. Robinson Mr. Robert L. Sowinski Ms. Evelyn R. Spoerl Ms. Eleanor L. Stevenson+ Ms. Gloria Strei Mr. William F. Strei Mrs. Helen Trombley+ Ms. Candice Tylke+ Ms. Janet C. Viney Ms. Cynthia Weix+ Charles Weyker Family Trust+ Mrs. Susan L. Wilkey Ms. Carol F. Young+ +Deceased
Program to Expand to Brown, Eau Claire and Portage Counties
20s/30s Celebrate Life! Committee Members Needed Dane County 20s/30s Celebrate Life! committee members took time out for a photograph while planning their July 2 event, “An Evening with Dr. Ian Duncan.” Pictured from left, back row: Terri Ellinger, Stella Galloway and Liz Vega; front row from left: Shauna Fisher, Heather Gionta and Jonathan Rubin. If you are in your 20s or 30s and have multiple sclerosis, consider attending the Wisconsin Chapter’s Celebrate Life! programs. And if you live in Brown County, Eau Claire County or Portage County and would like to participate on a committee to help plan and organize events in your area – plus have fun and network with others – please contact Meghan Schnabl via e-mail: meghan.schnabl@wisMS.org.
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‘My Gosh. I Climbed Mt. Everest Yesterday!’
Schneider Stands on Top of the World with MS When Lori Schneider woke up on May 24, 2009 of the year. Of course climbers also have to contend she finally felt the awe of what she and eight other with frostbite, respiratory illness, falls, dehydration and team members had accomplished the day before. They severe exhaustion. Schneider and her team were not the reached the summit of Mt. Everest, the highest point only climbers attempting Mt. Everest. Approximately on earth. Sixteen years of dreaming about that moment 300 people reached the summit this year, and six people had led to this pinnacle. Yet she says that while it was died trying. happening, it didn’t seem real. You see, on May 23, 2009 Schneider became the Climbing Boulders the Size of Cars first person with multiple sclerosis to climb to the top of From Camp IV at 26,300 feet – otherwise known Mt. Everest. What’s more, with Mt. Everest under her as the “death zone” – and utilizing oxygen, Schneider belt, she is also the only person with MS to climb the began her 11-hour ascent to the top late on the evening Seven Summits. of May 22. Schneider said she was in a “dreamlike state” Of course, MS or no MS, either of these climbing at night. When the sun finally came up, “It accomplishments is remarkable. Only 2,000 people was amazing. We could see all the peaks – a gorgeous have climbed Mt. Everest, and just 25 of those have surreal sight. The sky was filled with vibrant pink colors been women. An elite 250 have reached all and there Seven Summits – the highest points on the was lightning seven continents. below us.” To tackle Mt. Everest during her two Even month expedition, Schneider – a 52-yearthough old Bayfield, Wisconsin resident – had Schneider to focus on the climb, not the dream. had already Reaching the summit of Mt. Everest takes climbed six more than the goal of fulfilling a dream. of the Seven It takes persistence, determination and an Summits, uncompromising level of stamina. she said Mt. Schneider and her team spent more Everest “was than a month in Base Camp, climbing upa lot more and-down parts of the mountain a number dangerous After an 11-hour final push to the top of Mt. Everest , than I thought of times to acclimate their bodies to the elevation. When they were ready, the team Bayfield resident Lori Schneider holds a World MS Day it would be. banner to commemorate her accomplishment as the moved toward the summit over a five-day I told myself, first person with MS to reach the summit. period. Leaving Base Camp for the final ‘Don’t let push up the mountain, Schneider said, “I am climbing fear in – just concentrate on your foot placement and this mountain for all of us with MS, and all those who clipping into the safety line.’” Near the Hillary Step, need to be reminded to live their dreams.” Schneider said, she was climbing boulders the size of Of those who attempt to climb Mt. Everest, only cars with 1,000-foot drop-offs on either side. At about one-in-four succeed. Weather is a constant concern. this time, the weather turned cloudy and the wind Hurricane-force winds, freezing temperatures, reached 60 mph. “Actually, this helped,” Schneider said. snowstorms and avalanches regularly cause setbacks. “Because of the snow and wind, we could no longer see In fact, Mt. Everest only grants the world’s climbers the drop-off.” a five-day window of opportunity each spring to Lori reached the summit at 8:30 a.m. on May 23, summit. Conditions are far too treacherous the rest Nepal time. Because of the weather, she could only TOLL FREE NUMBER 1 800 242 3358
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stay for a few minutes. She called her dad in Janesville, Wisconsin and told him, “I’m here, Dad. I’m on the summit. I made it.” There was no time to bask in the thrill of her accomplishment. She unfurled a World MS Day flag, took some photographs and yelled out a quick hello towards heaven and her mother, who died in 2002. Then it was time to start the dangerous six-hour descent. “It was an amazing feeling to go step by step with the World MS Day flag in my pack,” said Schneider. Back at Camp IV, and a full 20 hours after setting out the night before, Schneider crawled into her tent. Upon waking the next day, she realized what had taken place. “My gosh. I climbed Mt. Everest yesterday!” she thought. Within 10 days, Schneider was back home in Wisconsin, resting and planning her next adventure.
been told she would soon be in a wheelchair, and she felt she had to hurry to do everything she wanted while she still could. Returning to Wisconsin, Schneider received an IV steroid treatment which diminished her symptoms. A new doctor wisely told her to proceed with her life as if nothing was wrong. She began using alternative therapies including acupuncture, herbals, amino acids, omega oils and other supplements. Schneider also began to follow a diet – largely vegetarian with limited meat, dairy, caffeine and sugar. She says it’s just healthy eating.
Ashamed, Embarrassed and Afraid Schneider did not tell her family about her diagnosis for almost six months. “I was ashamed, embarrassed and afraid to let people MS Interrupts a Climbing Career know I had MS. I Lori’s been a mountain climber thought they would for more than 16 years. Her first think less of me.” mountain was Kilimanjaro in Before the Africa, which she climbed with diagnosis, Schneider her father, summiting on his 61st had made plans to birthday. From there she trekked climb South America’s Lori is next in line to walk across a ladder positioned around the world until 1999 when Mt. Aconcagua. over a deep crevasse. Back in Bayfield, she practiced her active lifestyle reached an Determined to continue this maneuver by crossing ladders propped up on hay impasse. Half her body suddenly to her Seven Summit’s bales while wearing climbing boots and carrying a went numb and her life fell apart. quest, Schneider took 50-pound pack. Relapsing-remitting MS was the one doctor by surprise frightening diagnosis. Schneider ran away from the life when he walked into her hospital room before a she loved in Colorado – 20 years of teaching special scheduled spinal tap and found her doing a series of sit-ups in bed – 500, to be exact. When he asked what education students and a husband of 22 years. She had
Schneider Conquers The Seven Summits The Seven Summits are the highest points on each of the seven continents. Only 250 people have climbed them all. Lori Schneider is the first person with MS to achieve this milestone. The graphic at right shows the year and sequence in which she conquered the Seven Summits.
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1993 Mt. Kilimanjaro 19,350 feet Africa
2000 Mt. Aconcagua 22,841 feet South America
2002 Mt. Elbrus 18,540 feet Europe
she was doing, Schneider told him Planning Adventures for Others with MS she was getting ready to climb a Schneider has two goals for the mountain. And she did, summiting immediate future: First she’d like to develop Mt. Aconcagua a year after her Wisconsin-based outdoor adventure diagnosis on New Year’s Eve of the programs for people with MS. She wants Millennium. to share wilderness experiences including Over the years, Schneider’s kayaking, sailing and dog sledding. Next, physical health has been relatively Schneider plans to take a group of people unaffected by MS. She had to with MS to climb Mt. Kilimanjaro. She take one additional year off from wants others to experience the sense of her adventures for back surgery empowerment that she feels. “It would to repair a complication from her be a heavily supported group climb, with 1999 spinal tap, and also received guides and doctors,” Schneider explains. a second round of IV steroid She says the experience will be successful treatments. Prepared to take on Mt. Everest , whether or not participants reach the top Lori treks to Base Camp, elevation of the mountain. MS Was Not the End of Me “Life with MS can be very difficult at 17,600 feet. “MS has been a catalyst times, but it is often those very challenges to do the things I want to do,” explains Schneider. that make us stronger. I have let go of the fear and am “Physical training has made me strong. But if I end up living my dreams while I can. If I need to let go of some in a wheelchair, that will not define me. I am still Lori of the “physical” dreams in the future, I will find new inside. dreams to pursue. My mission is to give hope to others “I know I am a very fortunate person with MS, who are living with MS.” because mine is not bothering me at all right now. Yet I don’t fear what might happen.” In fact, after she Learn more about Lori Schneider by visiting her web site, climbed Mt. Aconcagua in 2000, she and her family www.empowermentthroughadventure.com. realized that MS did not signify an end. She told herself that if she was brave enough to stand on a mountain Schneider to Speak at Chapter’s peak, she was brave enough to tell people she has MS. Annual Meeting Celebrating Volunteers Before leaving her teaching position in Colorado, she told her young students that she did have a disease, but Lori Schneider, the first person with MS to climb Mt. Everest, will be the featured speaker at the Wisconsin that MS for her meant, “Mostly Strong.” Chapter’s Annual Meeting and Volunteer Celebration. Schneider added, “After my diagnosis, MS was my The meeting will be held Thursday, November 19, 2009 mountain to climb. Climbing mountains has helped me from 6 p.m. to 7:30 p.m. at Briggs & Stratton, 12301 W. move beyond the fear.” Wirth Street, Wauwatosa. RSVP required.
2006 Denali 20,320 feet North America
2008 Mt. Kosciusczko 7,310 feet Australia
2008 Vinson Massif 16,067 feet Antarctica
2009 Mt. Everest 29,035 feet Asia
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Bike MS: TOYOTA Best Dam Bike Ride Volunteers Needed
Join the Finish Line Spirit Team in Whitewater or Madison Become a member of the volunteer Spirit Team and you’ll be among the first to welcome the hardworking Bike MS cyclists at the finish line. These fundraisers deserve your cheers and signs of appreciation. Indeed, each of the 200plus Bike MS teams will raise at least $1,200, but some will bring in more than $100,000 to fight MS. Cyclists will cross the finish line at UW-Whitewater on Saturday, August 1, between noon and 6 p.m. Those riding on to Madison will reach the Alliant Energy Center on Sunday, August 2, between noon and 6 p.m. Spirit Team members can cheer the cyclists for one hour or all six – whatever works for your schedule.
To volunteer for the Finish Line Spirit Team – or any of our other Bike MS opportunities including route signage crew, check-in registration, bike loading and unloading crew, luggage, lunch, bike lock-up and unlock, party tent crew, dorm clean-up and lodging crew or supply truck drivers – go to wisMS.org and complete a volunteer application or contact Jenny Bremberger at 800-242-3358 or 262-369-4435 or jennifer.bremberger@wisMS.org. 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, Copywriter: Tish Robinson
August 1-2, 2009 Presented by your Milwaukee and Madison Area TOYOTA Dealers: Wilde • Smart • Russ Darrow Ruda • Kenosha • Jon Lancaster • Jack Safro Hesser • Heiser • Gentile • Don Jacobs • Andrew
ride or volunteer today wisms.org • 800 FIGHT MS 12 JOIN THE MOVEMENT: wisMS.org
Pewaukee to Whitewater to Madison
Add Your Voice, Your Story, Your Action
Tier 4 and National Registry Initiatives Moving Forward It is no secret that the cost of prescription drugs continues to rise. For those with multiple sclerosis, the financial impact is especially severe. In part, that’s because four of the six MS treatments available today are biologic drugs produced from living cell cultures, for which there are no generic alternatives. These treatments cost between $16,500 and $30,000 per year and are among a class of drugs termed “Tier 4” by insurance companies. Currently in Wisconsin, insurance companies are allowed to classify drugs into four cost categories or tiers, with Tier 4 being the highest. Wisconsin Chapter MS Advocates Co-pays for this class of were featured on the cover of the Spring 2009 MS Connection. drugs are calculated as a percentage of the drug’s cost (typically 20 to 33 percent), versus a traditional fixed co-pay amount ranging from $10 to $50. Because of the tiered system, some Wisconsin residents pay as much as $3,000 each month for their MS medication. Wisconsin Chapter Is Taking Action Last March, two bus loads of MS activists met in Madison for Legislative Affairs Day to visit with elected representatives. A primary topic of conversation was elimination of the Tier 4 category. The Wisconsin Chapter has been working closely with the state legislature to introduce a bill to eliminate the costly Tier 4 category. The first draft of this legislation has been completed. According to Georgia Maxwell, advocacy manager for the Wisconsin Chapter, “Representative Jon Richards of the 19th Assembly District has taken the lead on this initiative and is actively furthering our cause. We are thankful for his dedication and leadership.” Wisconsin Chapter Programs and Advocacy Director, Kim Kinner, added, “We are looking forward to having a final draft of this bill in early July. At that time it will be circulated to all members of the legislature to seek co-sponsors for the measure.” Kinner added, “Wisconsin
MS advocates will then be called upon to reach out to elected officials and urge their support of the bill.” For more information or to hear the latest updates on the Tier 4 effort, please contact Georgia Maxwell at 262-369-7170 or e-mail georgia.maxwell@wisMS.org; or contact Kim Kinner at 262-369-4421 or e-mail kim.kinner@wisMS.org. Registry Would Identify Geographic Clusters Accurate and current information on multiple sclerosis is necessary for progressing research, improving treatments and creating the most useful programs and services for those living with MS. But the last time a national study looked into the number of people living with MS and how often new cases occur was in 1975. Now, a new piece of legislation could usher in more precise information on MS. The National MS and Parkinson’s Disease Registries Act, introduced into legislation on June 16, 2009 by Senator Byron Dorgan (ND), would start registries for MS and Parkinson’s disease. Both of these neurological diseases impact many people but the incidence and prevalence are not known. The registries would allow for nationally coordinated systems to gather and analyze information on MS and Parkinson’s disease. Among other things, this information would help researchers identify geographic clusters of MS, study genetic and environmental risk factors and understand differences between genders. The more we know about MS, the closer we get to a cure. To contact your Senator on this and other issues concerning MS, sign up for Action Alerts (see below).
Sign Up to Receive Action Alerts Already in Wisconsin more than 1,800 individuals have signed up to receive MS Action Alerts – that’s double the number at this same time last year. MS Action Alert e-mail notices provide details about state and federal activities that affect individuals with multiple sclerosis. What’s more, the e-mails also offer opportunities for you to directly link with your Wisconsin representatives. Make your voice, your story and your action a catalyst for change. Sign up today by calling Georgia Maxwell at 262-369-7170 or e-mailing georgia.maxwell@wisMS.org.
TOLL FREE NUMBER 1 800 242 3358
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Denied Social Security: What If I Don’t Appeal on Time? By Attorney Thomas E. Bush
In this series of articles we have explained the importance of appealing a Social Security disability denial at least to the administrative law judge (ALJ) hearing level – otherwise known as the second appeal. The Social Security Administration (SSA) allows a claimant 60 days from the date of receipt of a denial letter to appeal. SSA assumes that a claimant will receive the denial letter within five days of the date on the letter. Thus, SSA effectively allows a claimant 65 days from the date of the denial to appeal. If a claimant doesn’t appeal on time, SSA usually makes the claimant start over with the claim; that is, file a new application for benefits. Starting over with a claim may result in loss of back benefits, and in some circumstances, SSA may require new evidence of disability before finding a claimant disabled. Starting over with a new claim usually results in additional delay in a process that is already too slow. Appeal Right Away Thus, when you receive a denial letter, appeal right away. Do not delay so that you can gather additional evidence of disability. Do not delay while you write an explanation why the denial is wrong. (You don’t need any more explanation for appealing than, “I am disabled.”) Do not delay even to hire an attorney. Appeal online or by going to the Social Security office so that you get a receipt showing timely appeal. What if a Late Appeal is Unavoidable? If a late appeal is unavoidable, SSA’s rules allow for the possibility of extending the deadline if there is “good cause.” To find good cause for the delay in appealing, SSA requires a detailed explanation why the appeal was late. SSA says it will consider the circumstances preventing timely appeal, whether an SSA action misled the claimant and whether the claimant failed to understand the requirement of timely appeal. Although SSA tends to be reasonable in determining good cause, this isn’t something to count on. Check the Status of Your Claim In one situation, SSA is downright stingy. Sometimes a claimant fails to receive the denial letter and finds out
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that a denial determination was issued only after the time for appeal has already run out. SSA requires more than the claimant’s word for it that a denial letter was never received – such as when a claimant moves, the denial letter shows the wrong address or the letter was returned by the post office as undeliverable. But if nothing corroborates a claimant’s statement that the denial letter was never received, SSA may make the claimant start over with a new claim. This possibility, however remote, means that it is a good idea to check the status of your claim every couple of months. Tom Bush is the preeminent expert on SSDI in Southeastern Wisconsin. A Wisconsin Chapter volunteer for 19 years, in 2008 Tom was inducted into the National MS Society’s Volunteer Hall of Fame. Tom’s web site is www.tebush.com.
Celebrating Amy Reinicke For the last five years, people attending multiple sclerosis workshops and programs in Wisconsin were greeted by the smiling face of Amy Reinicke. She was the face of MS to many, since she represented the National MS Society with passion and purpose as the organization’s Community Outreach Specialist. On Sunday, May 17, Amy Reinicke Amy passed away after a courageous six-month battle with pancreatic cancer. Amy was the mother of four children and will be remembered for her kind words, gentle touch and optimistic attitude when meeting the families served by the Chapter. Her nurturing nature comforted people, especially the newly diagnosed, and let them know the Society was here to help them navigate their futures. Amy served to educate the public about MS and performed her responsibilities with dedication and devotion. One of Amy’s favorite programs was the Chapter’s MS Scholarship initiative. In celebration of Amy’s life, contributions are being accepted to fund future scholarships in remembrance of Amy. Donations can be sent directly to the Wisconsin Chapter, 1120 James Drive, Hartland, WI 53029. Or e-mail meghan.schnabl@wisMS.org for more information.
It’s All Happening at the Zoo
MS Family Day at the Zoo is August 29 Get ready for family fun in the sun as the Wisconsin Chapter brings you the 14th annual MS Family Day at the Zoo. This year’s event will be held August 29 from 9 a.m. to 1 p.m. at the Milwaukee County Zoo. In addition to enjoying the Milwaukee County Zoo’s exhibits and programs – including the Great Lakes Bat Festival, which kicks off August 29 and features all things “batty” – the MS Family MS Family Day activities are held at the Day at the Zoo Milwaukee County Zoo. will include a complimentary lunch and free T-shirts for children ages 2- to 12-years-old, along with exciting prize raffles. Exhibitors will also be on hand to share information about products and services important to MS families.
Register today by visiting wisMS.org or calling 262-369-4400 or 800-242-3358. Fees for this event are: $11 for adults (ages 13-years-old and up) including lunch; $7 for children (ages 2- to 12-years-old) including lunch and a T-shirt. Children under age 2 are free (no T-shirt or lunch included). The registration deadline is Friday, August 21. Help a Family in Need Your donation is encouraged to help Wisconsin MS families in need attend MS Family Day at the Zoo. Visit wisMS.org to make your contribution today or call 262-369-4400 or 800-242-3358.
Furry Family Favorites Only $7 each at the Zoo or $8.50 by mail (includes shipping and handling). E-mail amanda.gasper@ wisMS.org to order.
Manual Wheelchair Donations Needed
Wheelchair Recycling Program Sells Mobility Equipment More than 1,000 pieces of medical equipment were refurbished and placed back in service last year by the staff and volunteers of the Wheelchair Recycling Program (WRP). Offering low-cost refurbished equipment, WRP is devoted to providing mobility with dignity. Besides manual and power wheelchairs; WRP sells canes, crutches, commodes, walkers and other medical equipment. WRP Executive Director Julie Schulz says, “There is a constant need
for donations, especially for manual wheelchairs for which there is a waiting list.” Additionally, Schulz says WRP needs equipment suitable for larger individuals. Multiple sclerosis clients who cannot afford WRP’s equipment fees may contact the Wisconsin Chapter for financial assistance. Check www.wrp.org for a listing of available equipment. Hours vary; you are encouraged to call first. Brookfield: 262-439-8248, wrp-gma@wrp.org. Madison: 608-243-1785, wrp-mad@wrp.org. TOLL FREE NUMBER 1 800 242 3358
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Eleven Walks. One destination. A World Free of MS. Thank you 2009 Walk MS Sponsors. Partnering Sponsors
Champion Sponsors
Supporting Sponsors
Inspiration Sponsors
Community Sponsors
Encouraging Sponsors
Carrier Insurance Agency Chamberlain Research Consultants Inc. Chicago Regional Council of Carpenters Collegiate Association for Multiple Sclerosis
Culligan
Motivational Sponsors Dental Health Products, Inc. Erickson Mobility Hanger Orthopedic Group Johnson & Son Roofing Midwest Dental ProHealth Neuroscience Center
Frito Lay
In-Kind Sponsors Kwik Trip Rockford Silk Screen
RW Baird Sargento Trust Point, Inc. Vitamin Shoppe Wangard Partners
Starbucks
Media Sponsors 105.1 Charlie FM 94.5 Lake FM WISM Mix 98.1 La Crosse Radio Group
WDEZ 101.9 FM Star 98 B93.7
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NBC 15 Today’s TMJ 4 ABC NEWS 19 ABC NEWS 18
Fox 11 Fox 55
Tomahawk Leader Clear Channel Outdoor Waukesha Freeman
Pin-Up Program Held 11 Years
Open Pantry Celebrates 2009 Walk MS Success
Open Pantry raised $26,050 selling Walk MS Pin-Ups. From left: Robert Buhler, Open Pantry; Jim Fiene, Open Pantry; Lisa Wartchow, New London support group leader; and Mary Hartwig, Wisconsin Chapter.
When it comes to supporting the National Multiple Sclerosis Society-Wisconsin Chapter, Open Pantry’s advertising tag line could easily be changed from, “You Need Time …We Can Help!” to “You Need A Cure …We Can Help!” For the 11th straight year, Open Pantry has donated funds raised through its highly-visible MS Pin-Up program to the Wisconsin Chapter. At an Open Pantry awards dinner held April 25, President and CEO Robert Buhler presented the Wisconsin Chapter with a check for $26,050. Open Pantry locations throughout Southeastern Wisconsin participated in the Pin-Up program. This year more than 100 employees also took part in Milwaukee’s Walk MS. The Open Pantry team is named for Buhler’s late mother, Eunice Jean. Buhler is a member of the Wisconsin Chapter’s Board of Trustees.
Grant Support Powers MS Programs, Events The Wisconsin Chapter extends its sincere gratitude to the following contributors for grants awarded January 1, 2009 through June 1, 2009. Your foundation can join the movement by calling Cindy Yomantas, 262-369-4431. • $10,000 from the Mae E. Demmer Charitable Trust for research and client programming. • $13,500 from Biogen Idec to support special fundraising events and educational programming. • $5,000 from the Seramur Family Foundation for general support.
• $13,500 from Teva Neuroscience to support events and educational programming • $1,000 from the Vilter Foundation for general support. • $15,000 from EMD Serono to support special fundraising events and educational programming. • $5,000 from the Puelicher Foundation for research. • $3,000 from Acorda Therapeutics for client programming. • $10,000 from Bayer Healthcare for special fundraising events.
Save the Date
Now Online
Wisconsin Chapter Calendar August 1-2: Bike MS: TOYOTA Best Dam Bike Ride August 13: MS Volunteer Day at the Wisconsin State Fair August 19: Cognition Program, Green Bay August 29: MS Family Day at the Zoo September 18-20: Challenge Walk MS: Door County September 24: Cognition Program, Madison November 19: Annual Meeting and Volunteer Celebration
2008 Annual Report You can access the Wisconsin Chapter’s 2008 Annual Report online by visiting wisMS.org and following the link under About This Chapter. TOLL FREE NUMBER 1 800 242 3358
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Wisconsin Chapter News and Notes
This is How We Move It
Aurora Baycare MS Clinic Visits Start July 24. Representatives of the Wisconsin Chapter regularly visit several of the organization’s official clinics. The current schedule of clinic visits is as follows: • 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. • University of Wisconsin Hospital and Clinics Neurology/MS Clinic: 4th Wednesday of each month. • ProHealth Care Neuroscience Center Waukesha Memorial Hospital: 4th Tuesday of each month • Aurora Baycare: 4th Friday of every month starting July 24 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. Sara White Visits N.E.W. Circle of Hope Support Group in Green Bay. Sara White, widow of Green Bay Packer Hall of Fame defensive lineman Reggie White, visited the N.E.W. Circle of Hope Support Sara White joined Green Bay’s N.E.W. Group in Green Bay Circle of Hope meeting on May 26. on May 26. White Pictured from left are: White, Tim was diagnosed with Mickelson and Sandee Sims. MS in March 2003. According to Tim Mickelson, who is a Wisconsin Chapter MS Community Ambassador, about 30 people attended the meeting. Wisconsin has more than 50 support groups. For a complete listing including meeting dates, please visit wisMS.org or call 800-242-3358, Option 2. Wisconsin State Fair Volunteer Positions. Only a few volunteer positions remain for the
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Wisconsin Chapter’s August 13 day at the Wisconsin State Fair. Individuals donating four or more hours receive free State Fair admission that same day. For more information, please contact Meghan Schnabl at 262-369-4420 or meghan.schnabl@wisMS.org. Wisconsin Chapter Wins Excellence in Programs Award. The National Multiple Sclerosis Society recognized the Wisconsin Chapter with an Excellence in Programs Award. Wisconsin was one of 10 Chapters to receive an award, and was recognized for its disability entitlements and cash assistance programs. Free Waukesha County Caregiver Family Retreat. If you’re a caregiver in need of a FREE vacation with your family, mark your calendar for September 25-26. Anyone from Waukesha County who is providing assistance to an adult 50 years or older qualifies for this program, which is funded by United Way’s Caregiver Initiative. The retreat is being held at Camp Whitcomb-Mason on Lake Keesus. Space is limited! For information or to register call, Tammy Hahn at 414-899-8672 or e-mail sparks@wi.rr.com. Information Resource Center. The Information Resource Center is available 7 a.m. to 6:30 p.m. CST, Monday through Friday at 1-800-242-3358, Option 1. Infoline, a 24-hour counseling service, can be reached by dialing 211. Sign Up for the Friendly Holiday Visitor Program. If you have MS and live in long-term care, please contact the Wisconsin Chapter. We’ll make sure you’re included in our Friendly Holiday Visitor program. To sign up please e-mail Erica.hartsough@wisMS.org for details. MS Connection Advertising and Insert Opportunities. Advertising in MS Connection is an efficient way to reach more than 40,000 Wisconsin residents. Published quarterly, the magazine’s readers include MS clients, friends and family along with savvy fundraisers, corporate leaders and medical professionals. For more information call 262-369-4431 or e-mail cindy.yomantas@wisMS.org. Be sure to ask about our new insert program.
Faces of MS Gather in Milwaukee, Madison
Luncheons Support Targeted Research, Inspire Attendees When it comes to multiple sclerosis, Dr. John Fleming likely has seen and heard it all. He’s practiced medicine and conducted MS research at the University of Wisconsin for more than 20 years, and is a member of the Wisconsin Chapter’s Clinical Advisory Committee. But what he saw and heard at the MS Luncheon in Madison this year deeply moved him. Madeleine Calhoon, one of the event’s featured “faces of MS,” talked about the courageous battle her mother, Laurie Noll, lost to MS. “Madeleine,” said Dr. Fleming, “had the courage to share some of the dark moments without flinching or covering them up with superficialities. It really was a moving tribute by this fine young woman, one of the most remarkable and clear commentaries I’ve heard on the reality of MS from any source – patient, family or professional. It was a poignant reminder to us all of what this fight against MS is all about.” The MS Luncheons held in Milwaukee on June 17 and Madison June 18, were all about generating funds to support important targeted MS research. The featured “faces of MS” speakers – Fran McLaughlin, Scott Walker, Dr. Bhupendra Khatri, Walter Hermanns, Lynn Helmke, Laura Hermanns, Channing Barker, Dr. Ian Duncan, David Calhoon, Madeleine Calhoon, Mike Sowinski and Laura Sowinski – inspired attendees and sponsors to donate nearly $135,000. You can learn more about targeted research and contribute to the Wisconsin Chapter’s research initiative by calling Denise Jendusa at 262-369-7166 or e-mail denise.jendusa@wisMS.org or visit wisMS.org.
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1. Richard Berger, Harry Holz, Jim Petrie, Doug Jacobson 2. Honoree Dr. Bhupendra Khatri 3. Speakers Laura Hermanns and Channing Barker 4. Speakers David Calhoon, Madeleine Calhoon and Dr. Ian Duncan 5. Speaker Scott Walker and Wisconsin Chapter President and CEO Colleen Kalt 6. Speaker Laura Sowinski and Wisconsin Chapter board member Shelley Peterman Schwarz
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TOLL FREE NUMBER 1 800 242 3358
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Mailing Label Changes Please check the appropriate box below, correct the label and return to the Wisconsin Chapter. Name change or misspelled Address change Remove from mailing list Received more than one copy Please send me my MS Connection via e-mail. My e-mail address is: __________________________________________
wisMS.org • Toll Free 1 800 242 3358 • 262 369 4400 Program Promoted on Facebook has 48 Members
Beloit College Student Launches MS Fundraising Club Before completing his freshman year at Beloit 1,200 total students. Cynthia Gray is the organization’s College in May, engineering student Canberk (pronounced advisor. “We’re lucky to have Cynthia,” said Dayan. John-beck) Dayan launched the school’s first MS Club. “She was teaching about MS before she was diagnosed Modeled after an organization he joined back home in with MS.” Gray is a successful Wisconsin Chapter MS Turkey, Dayan hopes the Beloit College fundraiser herself, MS Club will be similarly successful in generating more than raising funds for multiple sclerosis. $11,000 at last year’s An avid guitar and mandolin player, Cynthia’s Run 4 MS. Dayan was first drawn to the MS Club It was while in Izmir, Turkey when he saw a poster brainstorming with for an event called, “Musical Satisfaction Gray that the idea Night.” A high school freshman at the of participating in time, Dayan joined the MS Club and the 2009 Challenge soon after served as the organization’s Walk MS came president. Under his leadership, the MS about. “We hope to Club executed successful fundraising raise enough money events to support construction of the MS to send a Beloit Rehabilitation Clinic in Izmir. Dayan College team to proudly shares that one of the MS Club’s Back home for the summer, Canberk Dayan Door County,” said delivered a Wisconsin Chapter Walk MS T-shirt programs generated $2,000. “We sold Dayan. Challenge 800 tickets, secured sponsors and were and visited friends at the MS Rehabilitation Clinic Walk MS will be held in Izmir, Turkey. From left: Sema Turkel, Sebnem featured in the local newspaper.” September 18-20. Abla, Elaine Elagoz and Canberk Dayan. According to Dayan, the Beloit Dayan also hopes College MS Club is off to a good start. students at other It is listed on Facebook and already has 48 members – colleges and universities will follow Beloit’s lead and impressive for a campus that boasts a little more than start their own MS Clubs.