Legal and Financial Tips Employee Giving Programs Wisconsin Hunter is a Resource to Others
Volunteers Aid in Event Success
Wisconsin Chapter Board of Trustees Kenneth Minor, Chair Sonic Foundry, Inc.
Anne Brouwer McMillian Doolittle, LLP
Martin McLaughlin Reinhart Boerner Van Deuren, S.C.
David Rodgers, Vice Chair Briggs & Stratton Corporation
Robert Buhler Open Pantry Food Marts of Wisconsin, Inc.
Bruce Olson The Marcus Corporation Shelley Peterman Schwarz Meeting Life’s Challenges, LLC
Michael Lutze, Vice Chair Ernst & Young Tom Golden, Vice Chair M3 Insurance Solutions for Business James Rose, Treasurer Baker Tilly Virchow Krause, LLP Robert Sowinski, Secretary Diversified Insurance Services, Inc. Alyson Zierdt, Past Chair Attorney, Retired Colleen Kalt, President & CEO National MS SocietyWisconsin Chapter
Dennis Christiansen Community Advocate Robert Engel Retired, M&I Bank
David Raysich Plunkett Raysich Architects Patricia Raysich Community Advocate
Pamela Evason Windermere Wealth Advisors LLC
Jeffrey Steren Steren Management/McDonald’s
Paul Jones Harley-Davidson, Inc.
Robyn Turtenwald Community Advocate
Wayne Larsen ATI Ladish LLC
Wisconsin Chapter: Where
Molly Walsh Waisman Center
Does the Money Go?
82.6 10.7 6.7 %
Mission
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Fundraising
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Management & General
Source: 2011 Audited Financial Statement 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. ©2012 National Multiple Sclerosis Society-Wisconsin Chapter MS Connection is a quarterly publication of the National Multiple Sclerosis Society-Wisconsin Chapter. Editor: Maureen Waslicki | Assistant Editor: Amanda Gasper | Art Director: Amy Malo To comment or share a story idea, call 262-369-4421.
MS Connection | 2
Your Help Will Keep the Breakthroughs Coming Dear Friends, Thank you for your incredible support of this year’s Wisconsin Chapter events. From the MS Snowmobile Tour in January to Challenge Walk MS in September, your help in raising awareness and donations paves the way for programs and services to help those affected by MS. It also drives the research that is leading to more treatments for MS (like the new FDA-approved oral therapy Aubagio®) and a better understanding of all forms of the disease. Perhaps Dr. Randall Schapiro captured it best during his recent MS Research NOW presentation when he said, “We are in an era of exploding MS knowledge.” Certainly that’s true. There has never been a more exciting time in MS research than right now. We can’t let the pace of discoveries slow. You can help keep the breakthroughs coming. As we head into the season of giving, consider what your gift to the National Multiple Sclerosis Society can do. Please consider a year-end donation and the lasting effect it will create. In gratitude,
“We are in an era of exploding MS knowledge.” Colleen G. Kalt President & CEO
Legal and Financial Tips Employee Giving Programs Wisconsin Hunter is a Resource to Others
On the cover: The eighth annual Apple Orchard Walk & Fundraiser was held at Apple Holler in Sturtevant on August 25. It’s one of the approximately 200 Do It Yourself fundraisers held in Wisconsin each year. From golf outings and dances to dress down days and bake sales, the creativity and variety of these events are matched only by the dedication of those who create them. “This is a personal issue for me,” Apple Holler owner and CEO Dave Flannery told The Journal Times about the Orchard Walk. “Three of my sisters have MS, so I have a very special interest in doing what I can Volunteers to fight this disease, or even find a cure.” For more information on creating Aid in Event your own DIY fundraiser, call the Wisconsin Chapter office at Success 262-369-4400 or visit www.wisMS.org. MS Connection | 3
Choosing a Support Group That Meets Your Needs By Diane Gillan
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he Madison Area Self-Help (MASH) The MASH group is one of more than 40 group has 50 members and is co-faciliWisconsin Chapter-affiliated self-help groups tated by Walter Hoon and Mary Albaugh, who throughout the state for people with MS and was diagnosed with multiple sclerosis 34 years their caregivers. Most meet monthly and offer ago. “People are interested in knowing about participants a chance to discuss issues, share the latest MS research, information and feelings, therapies that are available, provide mutual support, “We want people to know we socialize and listen to and about MS symptoms,” have a fun group. We make Albaugh explained. educational presentations by them to feel at home.” professionals. Although each The MASH group has group has its own feel and hosted a variety of speakers format, groups share a including neurologists and urologists. Last year, belief that positive personal change can it had its biggest turnout ever when Jeffrey happen through individual effort with the Gingold, internationally acclaimed, awardsupport of others. winning author of several MS-related books including “Facing the Cognitive Challenges of Each group is facilitated by trained volunteers Multiple Sclerosis,” spoke about cognition and who are committed to helping others and have cognitive difficulties. personal experience with MS. Self-help groups are listed by region on the National MS SocietyAlbaugh said she receives calls about every Wisconsin Chapter website, wisMS.org. other month from people who want to attend Diane Gillan, a marketing and communications intern for the the group. “We want people to know we have Wisconsin Chapter and a Marquette University graduate. a fun group. We make them feel at home.”
The MASH group meets the third Saturday of the month. Open discussion is at 10 a.m. and the presenter speaks from 11 a.m. to noon. They meet at Babe’s Restaurant, 5614 Schroeder Rd. in Madison. Members of the MASH group volunteered at Bike MS: Best Dam Bike Ride, signing riders’ bibs after they cross the finish line in Madison. This yearly tradition is a highlight of the weekend for many riders.
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Committee Approves Two Partners in MS Care Facilities
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uring the group’s annual meeting in August, members of the National Multiple Sclerosis SocietyWisconsin Chapter’s Clinical Advisory Committee (CAC) approved the Partners in MS Care applications of two facilities: Gundersen Lutheran Medical Center in La Crosse and Dean Neurological Institute and Spine Center in Madison. These are the first two Wisconsin organizations to receive the Society’s new Partners in MS Care designation. Partners in MS Care is a National MS Society program that recognizes and supports quality MS care. Partners are expected to include health care professionals in the areas of neurology, mental health and rehabilitation, as well as sites that provide multi-disciplinary health care. What’s more, Partners must demonstrate knowledge and experience in MS care and have a special interest in treating people living with multiple sclerosis. It is anticipated that the CAC will identify at least two Partners in MS Care organizations each year. Members of the Wisconsin Chapter’s CAC include: Dr. Loren Rolak, Chair, Marshfield Clinic MS Center; Dr.
The quality of care provided at Gundersen Lutheran Medical Center in La Crosse helped it achieve Partner in MS Care designation. Dean Neurological Institute and Spine Center in Madison received the same designation.
Merle Teetzen, Aurora Baycare Medical Center MS Clinic; Dr. Eric Maas, Aurora Advanced Healthcare; Dr. Stanya Smith, ProHealth Care Neuroscience Center at Waukesha Memorial Hospital; Dr. John Fleming, University of Wisconsin Hospital and Clinics/Neurology/MS Clinic; and Dr. Buhpendra Khatri, St. Luke’s Medical Center Regional MS Center. Dr. Natasha Frost from the Dean Neurological Institute and Spine Center and Dr. Mary Goodsett from Gundersen Lutheran Medical Center will be the newest members of the Wisconsin Chapter’s CAC when the group convenes again in 2013. Also during the CAC meeting, Dr. Khatri announced that his practice is adding a new MS
neurologist, Dr. Clara BraunHashimi, in October, and that the Regional MS Center will re-locate to a new facility at Wheaton Franciscan Healthcare – St. Francis in December. The Regional MS Center currently supports more than 4,000 patients, making it one of the largest MS practices in the nation. CAC members wrapped up their annual meeting by reviewing funding priorities identified by the group to improve access to MS care in the Badger State (especially for those living in rural areas), and enhance MS research in Wisconsin. One of those suggestions included securing donations of approximately $100,000 to sponsor an MS fellow that the Society has vetted but is unable to fund. MS Connection | 5
I will: “The first thing I started to notice as my walking improved with Ampyra was my confidence in my ability to walk to meet my friends.” — Kristie Salerno Kent, diagnosed with MS in 1999.
AMPYRA® (dalfampridine) is indicated as a treatment to improve walking in patients with multiple sclerosis (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. The risk of having a seizure is higher in patients with certain types of kidney problems. AMPYRA should not be taken with other forms of 4-aminopyridine (4-AP, fampridine), since the active ingredient is the same. AMPYRA may cause serious side effects, including kidney or bladder infections. The most common side effects of AMPYRA include urinary tract infection, trouble sleeping, dizziness, headache, nausea, weakness, back pain, and problems with balance. The majority of side effects reported in the clinical trials were mild and transient. Take AMPYRA exactly as your doctor tells you to take it. Take AMPYRA tablets whole. Do not break, crush, chew or dissolve AMPYRA tablets before swallowing. If you miss a dose of AMPYRA, do not PAID ADVERTISEMENT
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Walking better matters. AMPYRA® (dalfampridine) is the first and only medication proven in two clinical trials to improve walking in people with multiple sclerosis (MS). In these clinical studies, people who walked faster reported improvement in their walking-related activities. Not everyone responds to AMPYRA. Individual results may vary. Can be taken in combination with your other MS therapies. Visit Ampyra.com to find out more about a FREE TRIAL.
Talk to your doctor to see if prescription AMPYRA is right for you. In two pivotal trials 35% and 43% of patients taking AMPYRA responded to treatment vs. 8% and 9% of patients taking placebo. make up the missed dose. Do not take 2 doses at the same time. Before taking Ampyra tell your doctor if you are pregnant or plan to become pregnant. It is not known if AMPYRA will harm your unborn baby. Tell your doctor if you 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. For more information, please see the complete Medication Guide on the next 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. © 2012 Acorda Therapeutics, Inc. All Rights Reserved. 08/12 AMP2041
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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 do 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
Know the medicines you take. Keep a list of them and show it to your doctor and pharmacist when you get a new medicine. How should I take AMPYRA? • Take AMPYRA exactly as your doctor tells you to take it. Do not change your dose of AMPYRA. • Take one tablet of AMPYRA 2 times each day about 12 hours apart. Do not take more than 2 tablets of AMPYRA in a 24-hour period. • Take AMPYRA tablets whole. Do not break, crush, chew or dissolve AMPYRA tablets before swallowing. If you cannot swallow AMPYRA tablets whole, tell your doctor. • AMPYRA is released slowly over time. If the tablet is broken, the medicine may be released too fast. This can raise your chance of having a seizure. • AMPYRA can be taken with or without food. • If you miss a dose of AMPYRA, do not make up the missed dose. Do not take 2 doses at the same time. Take your next dose at your regular scheduled time. • If you take too much AMPYRA, call your doctor or go to the nearest hospital emergency room right away. • Do not take AMPYRA together with other aminopyridine medications, including compounded 4-AP (sometimes called 4-aminopyridine, fampridine). PAID ADVERTISEMENT
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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.
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he On the Move Luncheons, held June 27 in Milwaukee and June 28 in Madison, brought together individuals in support of MS research. Attendees heard Dr. John Fleming talk about his latest research on probiotics. The 2012 MS scholarship recipients played a special part of the luncheons, greeting guests as they arrived. Scholars were recognized in a ceremony after each luncheon.
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6. 1. Mary Domer and Vida Langenkamp 2. Reyne Mullins with On the Move Luncheon speaker Dr. John Fleming 3. James Walker, recipient of the Father Charles Brooks MS Scholarship, embraces the namesake of his scholarship. 4. Don and Eileen Bell 5. (Left to right) Jennifer Haman, Ashley Platow, Travis Kobs, Michael Meade, James Ebben, James Walker, Reyne Mullins, Paige Burgess, Helaina Marlow and Anthony Hall 6. (Front row, left to right) Amanda Dehmlow, Rebecca Fijalkiewicz, Sarah Jones and Olivia Schmidt. (Back row, left to right) Ross Thorn, Jacob Wurtz and Zach Mielke, a former scholar who raised funds for the 2012 Mielke Family MS Scholarship awarded to Jacob Wurtz. 7. Pam and Phil Shufelt 8. Joe and Dawn Weckerle 9. Ross Thorn and his mother, Elaine 10. Carol O’Leary, Shelley Peterman Schwarz and Carolyn Koepp 9.
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UW Hospital and Clinics’ Research Connection
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very single one of the Society’s affiliated clinics has something special to offer patients,” said Dr. John Fleming, director of the UW Hospital and Clinics/ Multiple Sclerosis Clinic in Madison. The UW MS Clinic has been designated a Center for Comprehensive Care by the National Multiple Sclerosis Society. With its connection to UWMadison, the MS Clinic has an especially strong commitment to basic science and clinical research.
“What we should really try to do, my mentor used to say, is bring the bench to the clinic and the clinic to the bench,” Fleming said. “In other words, ideas from basic science, which you hear about from immunologist friends, might be relevant in the clinic. Similarly, we take what we see from our patients, and we try to go back and ask basic scientific questions.”
Dr. Fleming’s research inDr. John Fleming (left) and Dr. Aaron volving probiotics is from Field are amoung those who conduct MS the basic science concept research at the University of Wisconsin“There is a large amount of of the hygiene hypothMadison. research that flows from the esis, which observes that finding better MRI techniques, clinic,” Dr. Fleming said. there is less autoimmune looking at early MS lesions disease in the and repairing nerve damage. “Our main concern for new patients developing Laboratories on campus world where is a correct diagnosis. For return performing MS-related there are more research include those of parasites. In patients, we try to focus on the professors Zsuzsanna Fabry, study, MS major issues that each patient has.” his Ian Duncan, Aaron Field, patients are Bill Chu, Alexey Samsonov, treated with Julie Olson, Colleen Hayes microscopic worm eggs to Research is important to and Andrew Alexander, see if that will change their increase understanding of what is going on in the disease immune response and possibly among others. process. “The advantage lead to MRI and clinical Dr. Fleming noted that the of being on a campus with measures of improvement. other neurologists specializing a yearly research budget in MS at the clinic – Dr. approaching a billion “Many other people at the Michael Carrithers and Dr. dollars is the opportunity university participate in MS Christopher Luzzio – are also for diverse, in-depth research,” said Dr. Fleming, involved in MS research. For research collaborations. describing research covering instance, Dr. Luzzio is an diverse topics, such as MS Connection | 12
engineer and his research through the UW-Madison School of Engineering involves finding better adaptive equipment for patients with MS. Dr. Carrithers, whose research is focused on immune surveillance and migration of cells in the brain and spinal cord, said, “Our goals are to develop new and safer treatments for patients with all forms of multiple sclerosis.” All of the MS doctors split their time between research and seeing patients. More than 700 patients with MS and related disorders visit the
“Our goals are to develop new and safer treatments for patients with all forms of multiple sclerosis.” clinic each year. Dr. Fleming is also a member of the Wisconsin Chapter’s Clinical Advisory Committee and the National Multiple Sclerosis Society Clinical Advisory Board.
Wisconsin Chapter Clinic Visits Wisconsin Chapter representatives are periodically on site each month at these MS clinics: • Aurora Marinette Menominee Clinic, Marinette • Marshfield Clinic MS Center, Marshfield • Regional MS Center, St. Luke’s Medical Center, Milwaukee • ProHealth Care Neuroscience Center, Waukesha Memorial Hospital, Waukesha • ProHealth Care Oconomowoc Physician Center, Oconomowoc • UW Hospital and Clinics Neurology/ MS Clinic, Madison
“Our main concern for new patients is a correct diagnosis,” Dr. Fleming said. “For return patients, we try to focus on the major issues that each patient has.” The neurologists work closely with health care providers from different specialties for referrals. For example, a patient with spasticity issues or who is in need of an assistive walking device might see Dr. Kristin Caldera, who specializes in neurological rehabilitation. Nurses also work closely with patients for one-on-one education.
Questions About MS? Call an MS Navigator Because no one should face MS alone, the MS Navigator information hotline is available to take your calls. Staffed by MS experts, MS Navigator provides personalized service, up-to-date information and practical resources and referrals.
Call MS Navigator
1-800-344-4867, Option 2 7 a.m. to 6:30 p.m. CST Monday through Friday MS Connection | 13
Careers & Volunteers: Wisconsin Chapter volunteers offer their professional By Madeline Brockley
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hat may seem like an eclectic group of hard workers including medical personnel, audio/visual technicians and massage therapists have more in common than you think. These professionals and so many more lend their valuable skills to events such as Walk MS, Bike MS: Best Dam Bike Ride, Challenge Walk MS and
“For as long as Bike MS is around, we will be there.” MS Snowmobile Tour. Every year the National Multiple Sclerosis Society-Wisconsin Chapter requires help from more than 150 of these professional volunteers. “We couldn’t do it without them,” reflected Ashley Wissinger, the Wisconsin Chapter volunteer coordinator. Their talent and services are vital to the success of Chapter events. Keepin’ Them Rolling Every August, bike enthusiasts and beginners alike convene for a ride like no other – Bike MS: Best Dam Bike Ride. While participants are gearing up for their journey on wheels, volunteers are working hard to ensure it’s a smooth MS Connection | 14
ride. Although many bikers cruise flawlessly from start to finish, some require a brief pit stop due to mechanical difficulties. Eager to assist is a team of bike repair specialists from Wheel & Sprocket, Bike MS’s primary repair provider throughout the event’s 29-year history. Chris Kegel, president of Wheel & Sprocket, has been donating his time and expertise to Bike MS for every one of those 29 years. “Every year it gets better and better,” he noted. Wheel & Sprocket’s bike repair specialists keep busy throughout the Best Dam Bike Ride weekend. They set up at 4 a.m. and often work through the evening celebration. They are stationed along the route to offer mechanical support to anyone in need. Flat tires are the
most common repair, but a few broken spokes and minor adjustments also keep the specialists on their toes. “We have to be creative,” Kegel said. “The riders work so hard and we don’t want them to be disappointed when their bikes don’t work.” Kegel and his team never disappoint. Last year, he estimated they provided assistance to more than 500 cyclists, quickly getting them back on track.
Wheel & Sprocket President Chris Kegel has helped provide mechanical support for cyclists since the Best Dam Bike Ride began in 1984.
expertise for the Movement against MS The charitable atmosphere and the inspiring enthusiasm of participants and volunteers is one of the many reasons Kegel returns year after year. “The kinds of people that show up every year are big-hearted, special people. That never changes.” Most importantly, he cherishes the opportunity to be a part of a great cause. “For as long as Bike MS is around, we will be there.”
manages the audio and visual portion of the program. For Wauters, this September marks 30 years of service at the company and thus, 30 years of perfecting the technological know-how that he graciously offers to Challenge Walk MS. Wauters was drawn to Challenge Walk MS because of his personal connection to the cause. In 2007, he was diagnosed with relapse-remitting MS. Since then, he altered his diet, joined an MS support group in
Audio/visual professional Matt Wauters, who was diagnosed with relapse-remitting MS in 2007, helps with the evening programs throughout the Challenge Walk MS weekends.
“The most rewarding part of Challenge Walk is just being there and seeing so many people helping out with a great cause.”
just being there and seeing so many people helping out with a great cause. I will definitely be back next year.”
Focused on the Audience After a full day of walking, participants of Challenge Walk MS are familiar with the relief and entertainment provided at the evening celebrations. The
program that accompanies dinner is made possible by the efforts of dedicated volunteers.
the Green Bay area, and of course, started helping out with Challenge Walk MS.
One of these volunteers has been lending his professional talents for the past four years. Matt Wauters, Rental Division manager at Camera Corner/ Connecting Point in Green Bay, assembles equipment and
Following his retirement this September, Wauters plans to take more volunteer opportunities with the National MS Society and around his community. “The most rewarding part of Challenge Walk MS is
Madeline Brockley, a Wisconsin native, is a senior studying marketing at the University of Missouri. She interned at the National MS Society-Wisconsin Chapter through the summer and hopes to continue working in the nonprofit field.
If you have a professional skill to offer, please contact Ashley Wissinger at ashley. wissinger@nmss.org or (262) 369-4426. MS Connection | 15
How We Move It Wisconsin Chapter News and Notes
MS Research NOW Approximately 200 people attended the Wisconsin Chapter’s MS Research NOW presentation on September 8 in Milwaukee. During his hour-long talk, Dr. Randall Schapiro reviewed a variety of treatments for MS including an overview of current therapies and several in development. He told attendees that when it comes to MS research, “We are in an era of exploding knowledge.” Dr. Schapiro shared that in 1981 scientists published 564 research papers about MS, while in 2011 that number increased to 3,619. Dr. Schapiro founded The Schapiro Center for Multiple Sclerosis at the Minneapolis Clinic of Neurology and is the author of “Managing Symptoms of Multiple Sclerosis,” which is now in its 5th edition. Dr. Schapiro currently serves on the National MS Society’s Clinical Advisory Board and has volunteered with the organization for more than 40 years.
Emma Clawson (left) presented a check for $5,946.82 to Wisconsin Chapter President and CEO Colleen Kalt on behalf of the Arrowhead High School girls’ soccer team. The donation was raised at the 3rd annual Kickin’ MS Quad Fundraiser. Through its three year history, the fundraiser has generated $17,000 for the National MS SocietyWisconsin Chapter.
REMEMBER TO ASK ABOUT EMPLOYER MATCH Your donations to the Wisconsin Chapter could be increased – even doubled or tripled – if your employer has a matching gift program. Visit www.wisMS.org and click on “Matching Gifts” or ask your human resources representative to find out, then fill out any form your employer requires to take advantage of the program.
Volunteer Honors Three leaders of Wisconsin’s MS community have been selected to be inducted into National MS Society’s Volunteer Hall of Fame. Researcher Colleen Hayes, Ph.D., will be honored as a top Scientific Researcher, author Jeffrey Gingold will be inducted for Programs and Services, and Dr. John Fleming will be honored with the Lifetime Achievement Award for outstanding service to the Society. Each will be recognized at the National Leadership Conference, November 8-10 in Dallas. Also this fall, local MS advocate Becky Hall will be honored as the Philanthropic Youth of Today at the Association of Fundraising Professionals’ prestigious National Philanthropy Day Awards, November 13 in Milwaukee. MS Connection | 16
Swimming for Those with MS Congratulations to Rhinelander’s MS support group leader Brian Stewart, who recently took part in the 2.1-mile Pointe to LaPointe swim race in Lake Superior “in the name of MS, for everyone around the globe that thinks ... they have to Brian Stewart stop doing something.” MS Run the US Ashley Kumlien, founder of MS Run the US Inc., is gearing up for her latest challenge: a 3,000-mile relay with a team of 22 dedicated marathon runners. In 2013 each team member will embark on a 140-mile run across a portion of the United States in order to raise awareness and money for MS research. Kumlien, a lifelong runner, created her foundation and runs in honor of her mother Jill, who has MS. Kumlien has been a longtime supporter of the National MS Society-Wisconsin Chapter. New MS Clinic in Milwaukee Columbia St. Mary’s Hospital Milwaukee opened a new Multiple Sclerosis Clinic in the Orthopedic & Neuroscience Institute, located on 2301 North Lake Drive. The clinic is led by neurologist and Medical Director Dr. Michael Connor. For details visit www.columbia-stmarys.org.
Dan Erschen (left) was one of approximately 200 people to attend the MS Research NOW presentation by Dr. Randall Schapiro (right) in Milwaukee on Sept. 8.
Scholarship Applications Online applications for the National MS Society’s Scholarship Program 2013-14 will be available beginning October 1 and must be submitted no later than January 15, 2013. The program is open to high school seniors or graduates attending an accredited post-secondary school for the first time. Additional criteria include financial need, academic record, participation in school or community activities, and an essay (written by the applicant) on the impact of MS on his or her life. Awards range from $1,000–$3,000; a small number of four-year awards are offered. For more details, visit www. wisMS.org (under the Programs & Services section) or call Meghan Schnabl at 262-369-4420. More than 25 Carroll University students kicked off their freshman year September 4 by volunteering at the Wisconsin Chapter office. The students assembled check-in bags, created name tags and completed other tasks in preparation for Challenge Walk MS.
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The Role of Treating Doctors in a SSDI Claim
By Tom Bush
T
he Social Security Administration (SSA) and attorneys for claimants often ask treating doctors to provide opinions about their patients’ impairments. According to SSA, the treating doctor is the medical professional most able to provide a detailed, longitudinal picture of a claimant’s medical impairments. The treating doctor may bring a perspective to the medical evidence that cannot be obtained from the objective medical findings alone or from reports of individual examinations, such as consultative examinations arranged by SSA or brief hospitalizations. In MS cases, a patient’s history of exacerbations, neurological findings and the patient’s capacity for doing work-related activities are usually the most important information a doctor can provide. Claimants’ attorneys are particularly interested in obtaining a doctor’s opinion about the patient’s capacity for working, that is, a patient’s capacity to sit, stand, walk, bend, lift, use hands, pay attention, etc. at work. SSA gives the opinions of treating doctors special consideration. In MS cases, claimants for disability benefits usually have a primary physician, neurologist and perhaps other specialists who can provide valuable opinions. While SSA will consider a treating doctor’s specialty in weighing an opinion, SSA does not require a treating doctor to have special expertise in disability evaluation to provide an opinion about a patient’s capacity for working. It depends on the case, of course, but usually a treating doctor who has treated a patient for a long time can provide a more valuable opinion than a specialist who sees the patient only once. MS Connection | 18
Thus, if your doctor, rather than answering questions about your capacity to work, wants to send you to a specialist for a disability evaluation, ask your doctor to reconsider. Wisconsin’s Tom Bush Based on what your shares SSDI expertise doctor knows about your gleaned over 20 years. MS and what you have told your doctor about your daily activities, he/she probably already has a pretty good idea about your capacity for work-related activities. SSA does not require that a doctor’s opinion about capacity for working be based on a functional evaluation by a physical therapist. Indeed, it is likely that your doctor has a better idea about your long-term capacity for working than can be gleaned from a physical therapy evaluation that takes place on one day or even a few days. While SSA’s rules require that special weight be given to your doctor’s description of your capacity for sitting, standing, walking, lifting, etc., a doctor’s conclusion that a patient is “disabled” or “unable to work” is not worth very much. SSA says its job is to determine disability. A doctor’s job is to provide an opinion about a patient’s capacity for doing work-related activities from which SSA can draw a conclusion whether a patient is or is not disabled. Tom Bush is the preeminent expert on SSDI in Southeast Wisconsin. A Wisconsin Chapter volunteer for 20 years, he was inducted into the National MS Society’s Volunteer Hall of Fame in 2008. Tom’s website is www.tebush.com.
Into the Great Wide Open
Adaptive techniques help Don Christensen stay in the hunt
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ven among the amazing tales all Wisconsin deer hunters seem to tell, Don Christensen has bragging rights most others don’t. He’s shot six deer in the past six years – using his mouth. The 47-year-old married father of two is an avid outdoorsman and experienced hunter. A quadriplegic since progressive-relapsing MS sapped his ability to use his arms and legs, he uses a sipand-puff trigger system to fire both his .243 rifle and TenPoint crossbow with his mouth.
“You can’t do things the way you used to, but what you do is a far cry from…watching hunting shows and wishing.” He admits the .243 “is kind of a ladies or kids rifle” for someone who has been hunting since he was seven, “but if I put my old 30-06 up, (the recoil) would knock my front teeth out.” Adaptive hunting tips such as that – based on years of experience coupled with a keen ingenuity – are the basis of afarcry.info, the website Christensen founded to help people with disabilities access the outdoors.
The name “A Far Cry” came from a comment a friend made after Christensen’s MS progressed to where he had to give up a teaching job he loved, go on disability and face the very real possibility that he would never hunt again. “He said, ‘You can’t do things the way you used to, but what you do is a far cry from sitting on the couch watching hunting shows and wishing,’” Christensen recalled.
Using a sip-and-puff trigger system with both a rifle and a crossbow gives Don Christensen the ability to continue hunting. He posts resources and tips on adaptive hunting on his website, afarcry.info.
That friend also helped Christensen become the Disabilities Coordinator for Babe Winkelman Productions, finding hunting and fishing outfitters that can accommodate disabled sportspeople. He was recently featured on The Way Outfitters Outdoor Adventures, showing some of his adaptive hunting techniques from a shooting house similar to those on his 20-acre property north of Eau Claire, where most of the trails are wheelchair accessible. “Typically I’m in my deer stand every night during
archery season. My wife gets me out to the stand and I hang out in the woods every night from mid-September to early January,” he said. “I just love it. Once in a while I have to get serious and shoot a deer, but usually I just watch them.” Sharing the Experience He mentions his wife, LeAnn, often in talking about adaptive hunting. She’s played a big role in helping him make the transition, from researching and posting information for afarcry.info to sewing Velcro onto a shooting pad that helps keep the stock of Christensen’s rifle in place on his shoulder. MS Connection | 19
They met in college at St. Cloud State (he was studying criminal justice, she planned to teach math), married, moved to Wisconsin and had two children, both of whom have picked up their father’s enthusiasm for the outdoors.
Son Riley helped Don during the fall turkey season in 2006 and is still by his side each year during Wisconsin’s disabled hunt.
Beth, 24, “is the shooter” who prefers deer hunting, while son Riley, 20, “loves fishing most of all.” Don has taken each of them on an out-ofstate hunt of their choice in
Montana; Beth opted for antelope while Riley picked buffalo. “It’s much, much more fun to watch your children pull the trigger than to shoot something yourself,” he said. Not that he doesn’t still enjoy hunting himself. In fact, his goal is to shoot a deer using his hand instead of his mouth this year, and he’s been putting in the time and effort to strengthen every muscle from his fingers to shoulders to lower back to do it. “I don’t know if it’s achievable, but I’m for darn sure going to try.” Christensen is available for anyone who needs information on adaptive hunting or who just wants to trade hunting and fishing stories. He can be reached by email at don@afarcry.info.
“Typically I’m in my deer stand every night during archery season.”
Family Matters Similar to a majority of Wisconsin outdoorsmen, Don Christensen is a true family man. He and wife LeAnn celebrated their 25th wedding anniversary in 2012. Daughter Beth, a St. Cloud College alumni like her parents, is in the stand with her dad each year during the nine-day rifle hunt . Son Riley is by his side during Wisconsin’s annual disabled hunt. Their love and dedication to each other is evident, so it’s no surprise that when Don reached out to the National MS Society-Wisconsin Chapter for assistance, it was to help his family. Beth received an MS Scholarship in 2006. “We weren’t able to put the kids through college,” Don said, adding that the scholarship gave Beth a starting point. “It’s the first year of school that’s the most difficult year to come up with financing for.” Today Beth is an associate national bank examiner for the Office of the Comptroller of the Currency. During her first year on the job when she had Fridays off, she volunteered at her local National MS Society chapter in Minnesota. This past year, the Christensens received funds to provide respite care.
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Assistance for respite care and the MS Scholarship Program help families like the Christensens offset the financial toll MS can take. Clockwise from front: Don Christensen, his wife LeAnn and their children Beth and Riley.
Because he can’t be alone for more than a few hours, LeAnn is Don’s caregiver at night and on weekends, day in and day out, week after week, year after year. Don recognized that she
With assistance from the Wisconsin Chapter, LeAnn was able to go on a weeklong trip with her sisters without having to worry about Don.
“It really touches your heart knowing there are people out there who don’t know anything about you and they’re willing to jump in and help,” he added about those who donate to the Wisconsin Chapter directly or through the state’s tax check-off program, which funds financial assistance for residents diagnosed with MS. “It restores your faith in humanity a little bit.”
“It’s hard to be ‘on call’ all day, every day, no matter how much you care for somebody,” Don said. “When we asked the Wisconsin Chapter for help, the assistance they were able to negotiate had a much greater impact than either of us ever anticipated. Getting out of the routine, it feels like we’re living life again.
Opportunities such as the Make a Mark for MS tax check-off program make it easy to “jump in and help.” Every single dollar raised through the program helps improve the quality of life and ensure continued independence for those affected by MS. Changes to the program in 2013 will make it even more important to Make a Mark, as each organization’s total contributions will determine their continuation in the program.
in an hour to help me,” he explained. “Doing the same thing day after day, this stuff drags you down into a rut.”
“When we asked the Wisconsin Chapter for help, the assistance they were able to negotiate had a much greater impact than either of us ever anticipated.” needed a break. “I am total care – can’t feed myself, scratch an itch; when I get sore and need to move, I need to have someone help me. If she’s going to do something, she has to be back
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Put Employee Giving Campaigns to Work for MS
D
id you know that you can support the research, programs and services provided by the National Multiple Sclerosis Society through your company’s annual employee giving campaign? Did you also know that if your employer doesn’t already have a giving program, you could help establish one? While your employer may have its own corporate giving program, many work through one of three organizations to facilitate employee giving: Community Health Charities of Wisconsin, the United Way or the Combined Federal Campaign of Greater Wisconsin. All three make it easy to support the National MS Society and the critical MS-related research, programs and services that directly impact those in Wisconsin who are affected by multiple sclerosis. When your employee giving campaign begins, please remember that you need to specifically designate the National MS Society-Wisconsin Chapter as the beneficiary so that your gift will be directed accordingly. Made through a one-time donation or smaller periodic payroll deductions, these tax deductible gifts are especially important because they are not restricted in any way, meaning they can be used to support the areas of greatest need.
Community Health Charities of Wisconsin is the largest workplace giving program devoted solely to health issues. The United Way operates local workplace giving programs throughout Wisconsin. Combined Federal Campaign of Greater Wisconsin gives public sector and government employees the option of giving to organizations of their choice. (For the National MS Society-Wisconsin Chapter, select designated code number 36427.)
What if my employer doesn’t have a workplace giving program? Community Health Charities has a new service to help companies and public sector organizations establish their own workplace giving programs. For details, contact Gary Ross, Ph.D., president and CEO of Community Health Charities of Wisconsin, at 414-918-9100. Another option is to contact your local United Way organization and speak with a representative about establishing a workplace giving program. To find your local United Way, visit www.unitedway.org and enter your ZIP code in the upper right corner. MS Connection | 22
Neuro-Rehabilitation Can Help Manage Cognition
C
ognition” is a word used to describe all of the mental abilities and skills a person has. This includes thinking, language skills, remembering, making decisions, solving problems, and learning new skills and information. For some persons with MS, problems with cognition – or thinking – are not uncommon. Approximately 40-60% of patients report some degree of problem with cognition during the course of their disease. The severity of the problem
can vary from very mild to severe with the majority being mild to moderate. The amount of thinking problems a person
alcohol use, sleep disorders and thyroid problems. The most common types of thinking changes include
“Cognitive changes can also affect driving. Some individuals may notice difficulty navigating, reading a map or understanding directions.” experiences is directly related to changes in his or her brain. These changes are typically related to the MS but may also include the effects of depression, medication,
problems with recent memory, difficulty learning new things, impaired ability to think quickly, visual perception problems, and challenges with problemsolving skills. Some individuals Continued on Page 24
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Bonnie Dittel Receives MS Grant
Among 52 researchers awarded $18.4 million by the National MS Society
T
he National Multiple Sclerosis Society recently announced it is committing up to $18.4 million to support 52 new MS research projects and training fellowships, and that nearly half a million of those dollars are allocated to Bonnie Dittel, Ph.D., a senior investigator at BloodCenter of Wisconsin, Blood Research Institute, in Milwaukee. “This support is invaluable to our pursuit of understanding how the immune system can be targeted to reduce the severity of MS,” said Dittel, who will receive $450,431.00. Dittel’s investigation is studying the effects of a particular immune system signaling molecule, research that will lead to better understanding of how immune system activity in the brain is controlled, and could provide clues for new ways to treat MS.
Dittel’s research could provide clues for new MS treatments.
Continued from Page 23
report having trouble finding the right words in a conversation. Difficulty concentrating is not unusual especially when there are distractions such as music or noise from a television or radio. Organizing tasks or managing more than one task at a time can also present problems. Cognitive changes can also affect driving. Some individuals may notice difficulty navigating, reading a map or understanding directions. Changes and challenges in thinking will vary from person to person. No two individuals will experience cognition issues the same way. Some may never have problems at all. What is important is to recognize the MS Connection | 24
problems as early as possible in order to deal with them effectively. Treatment Options Treatment by professionals with neuro-rehabilitation experience can help men and women with MS learn to overcome and manage their cognitive challenges. Through individually designed treatment programs, specific goals can be established to focus on the areas where problems have been identified. Speech language pathologists can help persons who are dealing with changes affecting thinking and communication. Occupational therapists can help persons whose cognitive changes are affecting their ability to accomplish daily tasks such as
cooking, driving or managing household routines. Physiatrists (doctors who specialize in rehabilitation) often work with neurologists to provide medical treatment. A coordinated approach to care by physicians and therapists is strongly recommended. Effective rehabilitation strategies tailored to meet the needs of the patient have been shown to improve not only cognition but quality of life. Information provided by Sacred Heart Rehabilitation Institute (SHRI). SHRI is a licensed 32 bed acute rehabilitation hospital providing expert care for individuals with medical and comprehensive therapy needs. Specialized outpatient programs are available for neurorehabilitation (including multiple sclerosis), brain injury and general rehabilitation. For more information contact at 414-298-6750.
Don’t Underestimate the Importance of a Financial Roadmap By Pam Evason
“If you don’t know where you’re going, any road will get you there.”
T
his Lewis Carroll quote illustrates the impact of not having a carefully designed financial plan – if you don’t have an understanding of your financial and life goals, any savings and investment approach will appear sufficient. That is simply not true.
The importance of establishing a roadmap for your financial life (including not only a destination but the steps to get you there) cannot be underestimated for any adult, but it is vital for those living with a chronic illness such as MS. Below are four main steps to get you on your way.
1
Evaluate your current situation Take an inventory of where you are financially at this very moment. Some items for you to consider:
Pam Evason, CFA, CPA, is Managing Director at Windermere Wealth Advisors, LLC and serves on the Wisconsin Chapter Board of Trustees.
Inflows: What are current earnings? Any other sources of income (social security, pension, alimony/child support)? Outflows: What are current expenses? Consider all items, including necessities (housing, food, insurance), discretionary items (travel, leisure, hobbies), child expenses (tuition) and special items (medical expenses associated with MS, charitable giving) Savings: Consider all accounts, including bank accounts, investment accounts, 401(k) plans and any other savings vehicles
2
Insurance and estate planning: Accumulate current insurance policies and any estate planning documents Consider the future The future is difficult to predict, especially when consideration must be given to a chronic illness. Try to focus on how you see your life evolving at this very point in time. That’s a great starting point that can be adjusted as the time passes. Sample items to consider:
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Continued from Page 25
Anticipated retirement age – When do you foresee leaving the workforce? Changes in inflows/outflows – As you (and your children) age, how will your level of earnings and spending change? Living situation – Will you relocate in retirement?
3 4
Dreams – What’s on your wish list? What do you dream of doing in your later years? Do you have philanthropic goals? Work with a trusted professional Much like consulting a doctor for health issues or a lawyer for legal matters, working with an experienced professional in the development and execution of a financial plan and investment program is essential. The cost will be more than offset by the expertise, guidance and support you will receive along the way. How do you find a financial advisor? First, identify what matters most to you in the relationship. Do you have a gender or age preference? Would you prefer to work with a small or large firm? What credentials should they have? Do you have any client service requirements? Do you have any thoughts concerning how your money will be managed? Next, identify candidates by seeking recommendations from your friends, family and trusted advisors (accountants, bankers and lawyers) or by conducting your own searches (internet, local business publications). When interviewing candidates, keep in mind the items you identified as being important to you. Revisit and revise continuously Your financial life is anything but static, so once you have a plan in place, revisit it regularly with your financial advisor. Follow these four steps and soon you will have a clear idea of not only where you’re headed in your financial life, but the road that will get you there.
Pam Evason, CFA, CPA is Managing Director at Windermere Wealth Advisors, LLC, an investment advisory firm located in Milwaukee, Wis. If you have questions or comments, please contact her at (414) 716-6150 or pam.evason@windermerewealth.com.
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Local Society-Funded Researcher Seeks Effective MS Treatments Through the Study of Microglia
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icroglia–tiny cells unique to the central nervous system (CNS)–are at the center of Julie Olson’s lab. Dr. Olson is an assistant professor in the Department of Neurosurgery at the University of Wisconsin School of Medicine and Public Health. She studied microbiology and earned her doctorate at the University of Iowa College of Medicine. She completed a fellowship at Northwestern University in the lab of Stephen Miller, whose research focuses on an animal model of MS.
resident immune cells in the CNS. “Microglia are so unique to the rest of the immune system,” Dr. Olson said. “They’re actually sensors, and they are continually sensing the environment in the CNS, looking for if there is something wrong. Once they sense that there is something wrong, their immune functions will come out.” She continued, “Some of the overall aspects we are concerned with in our lab is how are microglia activated, what sort of response do they have when they are activated and then, how can we control that activation?”
“Microglia are so unique to the rest of the immune system.” “He uses the virus induced model for MS and I became very interested in looking at how viruses could cause an autoimmune disease,” she said. “Once I became a member of the lab, I became interested more in some of the general questions we have about MS.” Research Focus She then focused on microglia, which she described as the
Dr. Olson recently received a research award from the National Multiple Sclerosis Society to study a molecule called NHE-1 in microglia. NHE-1 is a molecule that may enhance the immune attack in MS through a process called proton exchange. This can result in the production of reactive oxygen species and nitric oxides, which can damage the CNS. Dr. Olson said, “What we are looking at is if we can
Julie Olson, Ph.D., is a Society-funded MS researcher at the University of Wisconsin School of Medicine and Public Health.
inhibit the NHE-1 from making that imbalance that leads to production of nitric oxides and turn the microglia back to being something more productive.” The goal is to find effective treatments for MS. The research has implications for other CNS diseases, such as stroke. “I did this in collaboration with a lab that focuses on stroke,” she said. “It’s interesting when we can bring in things from other fields that might be relevant to what we have going on in MS.” Additional Directions Dr. Olson’s lab work focuses on controlling microglia Continued on Page 28
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Continued from Page 27
responses, but they look at other aspects as well. “I’ve been doing some work on vitamin D with Colleen Hayes,” she said. “While
She also studies the innate immune response during MS. (The immune system has two response types: innate and adaptive. The innate immune system is the first line of defense, responding to pathogens in a generic way. The adaptive immune system is a more specific response, which recognizes and remembers pathogens.)
“The huge outpouring of postiveness from the Society and people who have MS is unparalleled.” she’s been focusing on T-cells, I’ve been concentrating on microglia and how vitamin D affects microglia.”
said. “And that was definitely critical for me to open up a new area of research into the innate immune system response and the role that plays in MS.” Dr. Olson said she thinks that the National MS Society is the best outlet for finding new treatments. She said, “The huge outpouring of postiveness from the Society and people who have MS is unparalleled. That’s really what drives us, the reason that we do our research.”
“The innate immune response research actually started from a grant that was funded by the National MS Society,” she
Foundations and Corporations Provide Grants to Support Research, Programs and Services The Wisconsin Chapter thanks the following organizations for the grants recently awarded in support of research, programs and services that are critical to people affected by MS • $10,000 Toussaint Foundation-Olive & Eunice, for Crisis Management Services • $3,350 Acorda Therapeutics Inc., for Education and Research NOW • $3,000 Teva Neuroscience, for Education • $3,000 The Gardner Foundation, for Crisis Management Services
• $2,500 Advanced Health Media LLC Novartis, for Education • $2,500 EMD Serono Inc., for Education • $2,500 Biogen Idec, for Education • $1,700 Questcor, for Education • $1,000 Avanir, for Education
In total, $29,550 was received in grants from April to June 2012. 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, call Cindy Yomantas at 262-369-4431 or cindy.yomantas@nmss.org. MS Connection | 28
Join Us!
August 3-4, 2013
More than a Ride Hills, headwinds and heat – the 2012 Best Dam Bike Ride seemed to have it all, including the extraordinary efforts of more than 1,700 cyclists and volunteers who took part. Together they helped raise more than $1.3 million for MS research and related services. Special thanks to the top Grand Tier fundraising teams: Chuck’s Athletic Supporters, Sonic Streamers, Team Wendy and Team CCC.
Sign up for the 30th! Plans are already underway for next year’s milestone 30th anniversary ride. Register today at bestdambikeride.org and start recruiting your team. MS Connection | 29
Thank You, 2012 Best Dam Bike Ride Sponsors
POTATOES
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Wisconsin Chapter Calendar of Upcoming Events Self-help group facilitator Training September 29 Teleconference: Managing Cognitive Changes in MS October 8 Teleconference: Exercise: Maybe a pain, but a lot to gain November 12 Teleconference: Don’t Quit Your Day Job December 10
Teleconference: African Americans Get MS Too January 14 MS snowmobile tour January 24-26, 2013 Teleconference: What’s Happening NOW – MS Research February 11 Teleconference: Don’t Fall for It, Keep Your Balance March 11
Annual meeting December 13
Participate from Home with Teleconference Series The Wisconsin Chapter hosts teleconferences on the second Monday of each month at 7 p.m. Central. Each hour-long call features expert information on different aspects of living with multiple sclerosis. There is no charge for these calls, but registration is required by the Thursday before each teleconference. Register online at wisMS.org or by calling 800-344-4867 (select option 2).
Teleconference: Calm Before the Storm April 8 Teleconference: It’s Not Just in Your Head May 13 Teleconference: My Family has MS June 10 Teleconference: Wake up! July 8 Please visit wisMS.org for the latest listing of Chapter activities and Community Events.
National Multiple Sclerosis Society-Wisconsin Chapter Annual Meeting Thursday, December 13 The Wisconsin Chapter’s Annual Meeting will be held Thursday, December 13. The Annual Meeting is held for the purpose of electing a Board of Trustees, reviewing the treasurer’s report and considering other appropriate business and reports that may be presented. Recommendations for Board of Trustees’ membership should be submitted to Melissa Palfery at 262-369-4419 or melissa.palfery@nmss.org. The event is open to the public; reservations for attendance are required. For more details please call 800-242-3358.
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