FALL 2016 | National Multiple Sclerosis Society-Wisconsin Chapter
Jim Turk
Leading by Serving
You Inspire Me Meeting the challenge of MS with courage, humor and hope
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or more than 30 years I have had the privilege of serving the mission of the National MS Society. During this time, we have come a long way.
• The Society has dedicated more than $900 million to MS research.
• We have built a critical platform of knowledge to serve as a springboard for progress. That’s evidenced in the 16 therapies now available for MS and the hundreds in the pipeline – more today than at any other time in history. • MS is more quickly diagnosed today, enabling early and sustained therapy to slow disease activity. • Scientists are making breakthroughs in identifying risk factors that can increase a person’s susceptibility to MS, which will help lead to ways to prevent the disease. And while all of these breakthroughs and research milestones are incredible and life changing in and of themselves; what continues to inspire me for all these many years are the people diagnosed with MS and their loved ones, who everyday meet the challenges of this disease with courage, humor and hope. People with MS are the center of everything we do at the National MS Society because you are the heart and soul that drives this movement forward. None of our progress in research or in helping people with MS live their best lives could have happened without your passion and In this circa 1980s photo, Colleen Kalt, far right, visits commitment. Because of you and the dedication with Bike MS volunteer Pearl Capello. At this year’s of your family and friends, the Society continues TOYOTA Best Dam Bike Tour event, Capello was honored to be the worldwide leader in MS research, state for 30 years of volunteer service. and federal MS advocacy, education and access to quality MS health care. Because you ride a bike, walk in an MS Walk, volunteer on a committee, host a backyard bar-b-que, or write a check at the end of the year; people with MS around the world have hope. I can never thank you enough for all that you have done and continue to do to create our shared vision of a world free of MS. I can only simply say thank you. It truly is a privilege to serve you. With gratitude,
Colleen G. Kalt President & CEO
MS Connection | 2
The National MS Society is committed to creating a world free of MS.
Beautiful Weather Helps Make This Year’s Tour the Best 33rd Annual Bike MS: TOYOTA Best Dam Bike Tour attracts 2,000
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early 2,000 cyclists and volunteers came together August 6-7, 2016 for the 33rd Annual Bike MS: TOYOTA Best Dam Bike Tour. The goal? To experience the best cycling event while raising $1.5 million to support research and services for those living with multiple sclerosis. More than $27 million has been raised throughout the Tour’s history. You can help the Society reach this year’s $1.5 million goal by making a donation online at bestdambiketour.org or by calling 262-369-4400. To register for next year’s Bike MS: TOYOTA Best Dam Bike Tour, August 4-5, 2017, visit bestdambiketour.org or call (262) 369-4400 for details. Registration is only $35 before January 31, 2017 and first-time riders get to sign up for free.
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Wisconsin MS Clinics
Quality MS care is offered at clinics throughout Wisconsin. Several locations offer more comprehensive services specific to MS including neurology, rehabilitation and mental health. These facilities have also met guidelines established by the National MS Society and receive designation as a Center for Comprehensive Care. CENTERS FOR COMPREHENSIVE MS CARE
PARTNERS IN MS CARE
Green Bay: Aurora Medical Group MS Clinic 920-288-8020
Milwaukee: Aurora Advanced Healthcare 414-247-4671
La Crosse: Gundersen Health System MS Center 608-775-9000
Marinette: Aurora Marinette Menominee Clinic 715-735-7421
Madison: Dean St. Mary’s MS Clinic 608-260-3425
Neenah:
UW Hospital and Clinics MS Clinic 608-262-0546
MS CLINICS
Marshfield: Marshfield MS Clinic 715-387-5350 Waukesha: ProHealth Care MS Clinic 262-928-8668
OFF MY WAVE.
Neuroscience Group 920-725-9373
Milwaukee: Wheaton Franciscan Center for Neurological Disorders 414-769-4040
The Froedtert & The Medical College of Wisconsin 414-805-3666
Summit:
Aurora Wilkinson Medical Clinic 262-434-5000
Ocean Beach native and local sur f legend Steve Bettis was diagnosed with MS in 2006. Although sur fing is still central to his life, he hasn’t been able to get out on the water in 10 years. For a man whose daily routine always included a few waves, more than a decade out of the sur f is just too long. This is why the National MS Society teamed up with his buddy Rober t “Wingnut” Weaver and used vir tual reality to get Steve back on his wave. See their experience and find out how you can share yours at WeAreStrongerThanMS.org.
Together We Are Stronger
The Froedtert & the Medical College of Wisconsin Dr. Staley Brod leads multidisciplinary team at facility’s MS Clinic
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ith the addition of Staley A. Brod, MD, professor of neurology and chief of the Division of Multiple Sclerosis/ Neuroimmunology, to the Froedtert & the Medical College of Wisconsin health network; the facility’s Multiple Sclerosis (MS) Program is expanding its ability to provide comprehensive care to patients with MS. The Program’s multidisciplinary team, located within the Neurosciences Center at the Froedtert & MCW in Milwaukee, includes Dr. Brod, neurologist; Julie Bobholz, PhD and Sara J. Swanson, PhD, neuropsychologists; and Michelle Wesline, MS Program coordinator, along with physical, occupational and speech therapists and an MS-certified nurse practitioner. Together, they will also draw on the expertise of specialists from the Froedtert & MCW health network, including urologists, ophthalmologists, neuro-ophthalmologists and neuroradiologists, to address each patient’s needs.
retiring from a 35-year career in internal medicine and neurology. “There is very good support by being connected to the Froedtert & MCW health network. The physical medicine and rehabilitation providers at
“ Patients want somebody who is an expert in the field, and a facility that provides the services they need.”
– Dr. Staley Brod
Froedtert Hospital work with spasticity. There are urologists interested in MS, and that’s unusual. Our team works with providers at the Froedtert & MCW Eye Institute. Physical, occupational, and speech therapy can be easily interjected. Patients will have options.”
Currently, the team is working to become a National MS Society Partner in Care, a program that recognizes and supports quality MS care in the areas of neurology, rehabilitation and mental health while also being a Society-recognized Center for Comprehensive MS Care that offers a multidisciplinary model of care to address the many complexities of MS. “I’m just one cog in this wheel of comprehensive care,” Dr. Brod explained. He joined the Froedtert & MCW health network in January, moving from Texas and then Boston after
The Froedtert & The Medical College of Wisconsin’s MS Clinic Staff includes: Front row (left to right): Samantha Simpson, Administrative AssistantNeurosciences; Terry Walton, Occupational Therapist; Middle row (left to right): Amy Monday, Speech Therapist; Dr. Staley Brod, Medical Director- MS Program; Dr. Julie Bobholz, Neuropsychologist; Barb Zembles, Manager- Neurosciences clinic; Back row (left to right): Cindy Sunstrom, Clinic RN; Laurie Dulitz, Speech Therapist; Anne Jurenec, Executive Director Neuroscience and Spine Service Lines; Michelle Wesline, RN- MS Program Coordinator
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Continued from Page 5
Additionally, there are research trials and investigations that patients will have the opportunity to enroll in. Dr. Brod is particularly interested in the potential for scientific interactions with other Froedtert & MCW researchers and technology available at Froedtert Hospital, particularly with the facility’s 7-Tesla MRI. It provides a higher magnetic field strength in an MRI than the more common 3-Tesla machines. The results, accoding to Dr. Brod, provide a higher resolution of gray matter lesions in MS, which could spawn studies on cognition and anatomical issues on the brain, as well as how the lesions may correlate to psychological issues sometimes associated with MS, or to possible changes in blood and spinal fluids relevant to remylination.
Similarly, Dr. Brod is looking forward to conducting immunology research in the lab of MS researcher Bonnie Dittel, PhD, senior investigator at the nearby Blood Research Institute, BloodCenter of Wisconsin. (For more about Dr. Dittel, see page 2.) Still, the main focus will be on comprehensive patient care. “Patients want somebody who is an expert in the field, and a facility that provides the services they need,” Dr. Brod explained. “It’s a confidence issue really, and with the breadth of this facility and our expertise, we cover all these services. Combined with the reputation of the Froedtert & MCW health network, that’s comforting.” Learn more about the Multiple Sclerosis Program at froedtert.com/neuroscience/multiple-sclerosis. n
Wisconsin’s Calendar of Upcoming Events 2017
MS SNOWMOBILE TOUR January 26-28, 2017
April, May, September
MS SUMMIT
March 11, 2017
2017
10TH ANNIVERSARY CHALLENGE WALK MS
BIKE MS: TOYOTA BEST DAM BIKE TOUR
September 22-24, 2017
August 5-6, 2017
Door County 2016
MS CONNECTION IS A QUARTERLY PUBLICATION OF THE NATIONAL MULTIPLE SCLEROSIS SOCIETY-WISCONSIN CHAPTER.
National MS Society-Wisconsin Chapter 1120 James Dr., Ste. A, Hartland, WI 53029
Editor: Maureen Waslicki Graphic Design and Production: Amy Malo To comment or share a story idea, call 262-369-4400 or email info.wisMS@nmss.org.
262-369-4400 | 800-242-3358
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MS Connection | 6
@
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TOLL FREE
What to Know Before You Vote Turn-out rate for people with disabilities 6% lower than general population BY LAUREN SHRYNE
I
have voted in every national election, and most state and local elections, since I turned 18. I’ve stood in lines outside of schools, courthouses, firehouses and retirement homes, eager to register my stance on candidates and issues that were important to me. I believe that voting is the most important way that we participate in the democratic system, and my belief in its importance has only gotten stronger since I was diagnosed with multiple sclerosis in 2014.
comes in as the primary resource for information regarding voting in the United States, including specific resources for voters with disabilities.
Recently, I had the opportunity to attend a meeting and training for a nationwide campaign to get out the disability vote — thereby harnessing our community’s power to influence decisions of particular importance to us, like social security, Medicare, healthcare, affordable housing, accessible transportation, employment and funding for MS research. It’s important that people with disabilities In that first meeting, we exercise their right to vote as fully as the discussed the potential general population. Currently, more than one power of the disability out of seven eligible vote and the challenges voters have a disability; that we face in exercising yet, the turnout rate of that power. But it all starts with a simple first people with disabilities step: registering to vote. is nearly six percent
The many hurdles, both practical and emotional, that a person with a disability might face when trying to exercise their right to vote only became apparent as I faced them myself: losing the ability to walk to school, as after half a mile I found myself lower than other Voting is Empowering tripping and dizzy; Americans who Though facing becoming unable to are eligible to vote. an incurable and summon the strength in At nationalMSsociety.org/voterinfo, learn your unpredictable disease my right hand to sign voting rights, including your protections under like MS is difficult, a receipt for my coffee; learning to advocate failing to recognize the Americans with Disabilities Act; how to for myself and for friends passing on register, including online; and how to ensure others with MS has the sidewalk as my that your polling place is accessible to you. been profoundly vision blurred; missing empowering. meetings and blanking Volunteering as an MS activist has encouraged on names as my memory became unreliable. me to educate my legislators about MS and And I was very, very tired. At the height of an urge them to support measures that make a MS flare, when performing basic, necessary tasks real difference in the lives of people with MS. requires momentous effort, voting might cede to Now, by participating in a voting campaign, I more immediate concerns. help others in our oft-overlooked community to Accessible Polling Places feel empowered to register their opinions and, But government can help by ensuring that hopefully, influence the political conversation. polling places are accessible, by providing and First, though, we have to show up. Register to maintaining accessible voting equipment, and by vote! Go to nationalMSsociety.org/voterinfo to making sure that anyone who seeks information learn how. n on how to vote can easily find it. That’s where the U.S. Elections Assistance Commission (eac.gov)
Your voice is important
MS Connection | 7
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Healing By Serving Others Jim Turk is a volunteer, activist and clinical trial participant BY JIM TURK
D
o you remember feeling invincible as a kid? I once jumped my bike off of a construction mound – my head broke the fall. That was before we all wore helmets. I got up, brushed myself off and kept riding. I now deal with a different kind of punishment – every hour of every day – and I can’t just walk away from it. It started with speech difficulty during graduate school. I made the earliest appointment that I could – three weeks out – and called to tell my wife who insisted that I get in sooner. I called back and the receptionist asked, “Is there anything else we should know?” When I told her I was having some speech difficulty, she asked how soon I could get there! I went to Urgent Care and they misdiagnosed me. They thought it must be stress or lack of sleep. I was a busy guy, after all – running marathons, drumming in a band, going to graduate school, working full time. All with a family.
Jim Turk, left, visits with Wisconsin congressman Mark Pocan as part of Turk’s Disctrict Activist Leader volunteer responsibilities.
Okay – so it has a name, but it doesn’t sound good! What does that mean for my future? What does that mean for my family? After the standard freak-out period, I enrolled in a clinical trial.
“Life’s under no obligation to give us what we expect.”
I thought I was – Margaret Mitchell healthy and bulletproof. If they’re telling me what I want to hear, that’s good enough for me! I’ll just take the punishment and hope I can walk away. So, after a brief reprieve from symptoms during my final semester, I decided it was time to get back into running. I couldn’t get through a few minutes, though, without losing control of my legs and fine motor skills. That’s not right! I talked to my doctor about it and we explored a number of things, but eventually I had an MRI and the diagnosis was confirmed. It was multiple sclerosis.
I was heavy into research so it seemed logical. By a lucky coincidence, my neurologist was just getting one started. You might not have thought I was lucky, though. You see - I swallowed parasite eggs!
I decided early on that I would use my research background and natural rapport to spread the word about clinical trials. About how important enrollment is, even when the treatment doesn’t work. I had a lot of experience in clinical research through my work at the University of WisconsinMadison as well as graduate school – and now I had the perfect ice-breaker! I contacted the MS Society and started traveling around Wisconsin, delivering my message. Then the Wisconsin Chapter asked me to teach a class on the subject at the 2010 MS Summit. Continued on Page 10 MS Connection | 9
Continued from Page 9
Volunteering with the National MS Society
Jim Turk always lives life to the fullest, including drumming in a rock ‘n’ roll band.
Because of my science background and the fact that the trial was unconventional, I was soon featured in The Wall Street Journal and BBC Future. I even took the stage with my neurologist at the Wisconsin Chapter’s MS Luncheon to talk about the trial. At the same time, I was raising money for Walk MS and started volunteering. I eventually became cochair of Madison’s Walk MS event. I soon began doing interviews on TV and radio. Advocating for people and educating them on the value of a good attitude and scientifically sound principles became my mission. I even started a blog, beatmydisease.com, to help me reach more people. As it turned out, FBR Media liked my mission as well – they filmed a documentary in 2015 about me and my life with MS.
“Make your life a mission; not an intermission.” – Arnold Glasgow
I give regular talks to a variety of audiences and even delivered a speech at the graduation ceremony for a UW Master’s program! Today, I am a District Activist Leader for the MS Society, a blogger and a speaker. There is no question that I’m a different person than I used to be. I’m in a wheelchair instead of running shoes and no longer have an office at UW-Madison; but I keep busy, have a happy and healthy family, and am passionate about what I do. I have a lot to be thankful for. Watch for Turk’s posts on MSConnection.org and follow him on his website, beatmydisease.com. n MS Connection | 10
There are numerous opportunities to help others, support MS-related events, or become a leader or activist in the MS movement. Walk MS events are an easy and local way to get involved. Learn more and get involved in the walks or other upcoming and ongoing volunteer opportunities at wisMS.org or by contacting ashley.wissinger@nmss.org.
Research Studies Researchers are committed to finding solutions for everyone affected by MS — the very people who hold the key to the answers. Without participants in research studies, MS research would come to a standstill. People with MS, and sometimes family members, can help advance MS research by volunteering for clinical trials and other studies, responding to surveys, donating DNA from saliva and blood samples, and more. Visit nationalmssociety. org/Research/Participate-in-Research-Studies to learn more.
What is a District Activist Leader? District Activist Leaders build and foster critical relationships with elected officials in their legislative districts, serving as a liaison between officials and the Society and helping to develop a reliable grassroots movement across the state and the country. It is an ongoing volunteer position requiring a time commitment of approximately 10-15 hours per month for a minimum of two years. Learn more at nationalMSsociety.org or by contacting denise.jendusa@nmss.org.
Integrating Academics and Community Service College scholarship recipient reflects on impact of MS
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ne year ago, I sat at my desk as my dad gave himself his tri-weekly injection to treat his multiple sclerosis.
BY EMILY TABERS-KWAK Society Scholar Emily Tabers-Kwak is currently attending Edgewood College in Madison, Wisconsin.
Today, for everything that has changed in my life this past year, many of the challenges of having a parent with MS remain. Now, as I begin my second semester of college, I reflect upon how I looked forward to attending. As an Asian-American, I appreciated how I was invited into a learning community that expanded outside our classroom walls. I shared in organized events where our teams took public transportation to grapple with some of the challenges that people with disabilities may experience. I put these into context as I contemplated the resilience it takes for someone with a disease like MS to travel around town for daily errands.
I felt like I was on the cutting edge when I was able to share something that nobody else knew: I had just read an article talking about research supported by the Society where they found that
“This year, I learned to integrate academics and community service within the context of the world in which we live.”
– Emily Tabers-Kwak
by blocking a molecule present in specific stem cells, they may be able to stimulate myelin repair (nationalMSsociety.org/myelinnews2015). It was also relevant because my dad had just had an MRI and, afterward, we had talked about the myelin sheath and how wonderful it would be if it could be repaired.
Emily Tabers-Kwak with her dad, John Kwak, who was diagnosed with MS in 2010.
Another key connection I made was during a trip to a biotech lab for my class in bioethics. We got to see DNA and learned about stem cells.
This year, I learned to integrate academics and community service within the context of the world in which we live. I would not have made this vital connection so early in my college career without the support of a Society scholarship. Since I love literature and am an avid reader, I am looking forward to declaring my major in English and hope to become a head librarian someday. Despite the challenges that MS has presented to my family, the scholarship has allowed me to grow and start achieving my life goals. To learn more about the Society’s Scholarship Program, visit nationalMSsociety.org/ scholarship. n
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Make a Mark for MS Donate to the Society on your Wisconsin income tax statement
M
ake a Mark for MS is the name given to the option that Wisconsin taxpayers have to make a donation to the National Multiple Sclerosis Society on their state income tax form. Just under $70,000 was generated in donations through this program in 2015. That’s important because, starting in 2015, the Society must generate a three-year average of $50,000 in donations in order to remain in the program. While this giving option is still months away, you can help by letting your friends and family know about the program and asking them to “Make a Mark” when the time comes. All the money donated stays in Wisconsin to help those diagnosed with MS improve their quality of life and maintain their independence. For more information about the Make a Mark for MS program, please call 262-369-4400 or email denise.jendusa@nmss.org. n
A three-year average of $50,000 is needed beginning with 2015 donations for multiple sclerosis to remain in Wisconsin’s tax check-off donation program
$70,000 $65,000
$68,455.52
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Confirmed income tax contributions
Make a contribution on your 2016 tax form
Make a contribution on your 2017 tax form
2015
2016
2017 MS Connection | 13
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How We Move It Wisconsin Chapter News and Notes
Scholarship Applications Open Soon
The National Multiple Sclerosis Society’s scholarship program exists to help highly qualified students who have been diagnosed with MS or who have a parent with MS achieve their dreams of going to college. Eligible students need to be enrolled in at least six credit hours per semester at an undergraduate course of study for the 2017-2018 academic year. Enrollment for the 2017 scholarship program is expected to be open by November 1, 2016 and typically closes in mid-January. Visit nationalMSsociety.org/scholarship for an update on dates and deadline, details on eligibility criteria and to access the online application.
Help Plan Your Community’s Walk MS
Did you know that every Walk MS event is led by community volunteers? Join them! Contact Kristin Raeber at kristin.raeber@ nmss.org or call 262-369-4436 and get in on the planning.
Cooling Vests
The MS Association of America provides free cooling vests to individuals diagnosed with multiple sclerosis. Call the MSAA at 800-532-7667 for more details.
Give Through Work
You can support the National MS SocietyWisconsin Chapter by making a one-time donation or periodic payroll deductions through your company’s annual employee giving campaign. While your employer may have its own corporate giving program, many work through organizations such as Community Health Charities, the United Way or the Combined Federal Campaign. Check with your employer, and also ask if they sponsor a matching gift program, which could double or event triple your gift.
Knowledge is Empowering
The National MS Society offers an extensive variety of programs, services, resources and connection opportunities for people living with and affected by MS, including family members, caregivers and other members of their support systems. These resources range from insurance and financial information to employment advice, and to resources for the newly diagnosed. Learn more at nationalMSsociety.org/Resources-Support.
Self-Help Groups
Looking to connect with other people affected by MS? Self-help groups bring people together who share common life experiences for support, education and mutual aid. There are more than 40 self-help groups in Wisconsin. Visit nationalmssociety.org/Resources-Support/ Find-Support/Join-a-Local-Support-Group or contact an MS Navigator at 800-344-4867 to get a list of groups and meeting dates. MS Connection | 15
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Date and Time: 11/16/2016 at 6:00 PM Speaker: Jessica Szpak, PA Madison, WI Location: Suzy's Steak & Seafood House 2711 County Road CX Portage, WI 53901 Event Code: TR380597
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Thank You, 2016 Sponsors Event sponsors partner with the National Multiple Sclerosis Society, allowing more funds to go toward the critical research, programs and services that make a difference in the lives of people affected by MS.
MS Connection | 17
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MS Connection | 18
National Multiple Sclerosis SocietyWisconsin Chapter Board of Trustees Tom Golden, Chair M3 Insurance Solutions, Inc. Kenneth Minor, Vice Chair Sonic Foundry, Inc. James Rose, Vice Chair Baker Tilly Virchow Krause, LLP Michael Lutze, Treasurer Ernst & Young Robert Sowinski, Secretary Diversified Insurance Solutions David Rodgers, Past Chair Briggs & Stratton Corporation Colleen Kalt, President & CEO National MS SocietyWisconsin Chapter
Robert Buhler Open Pantry Food Marts of Wisconsin, Inc. Dennis Christiansen Secured Retirement Strategies Group, LLC Robert deJong Rose & deJong, S.C. Robert Engel Retired, M&I Bank Pamela Evason, Windermere Wealth Advisors, LLC Josh Hoesch First Business Bank Paul Jones Harley-Davidson, Inc. Fr. James Kaestner Retired Wayne Larsen Ladish Company Foundation Martin McLaughlin Reinhart Boerner Van Deuren, s.c.
Anne Brouwer Jeffrey Steren McMillianDoolittle, LLP Steren Management/ McDonald’s
National MS Society Executive Vice President Research, Bruce Bebo, presented the Stephen C. Reingold Award to Blood Research Institute, BloodCenter of Wisconsin Senior Investigator Bonnie Dittel, during the Research Programs Advisory Committee meeting in June.
Wisconsin’s Dittel Honored by Society for Outstanding Proposal Longtime Wisconsin MS researcher Dr. Bonnie Dittel received yet another accolade in June when she was honored by the Society with the Stephen C. Reingold Award for submitting 2016’s most outstanding proposal. Dr. Dittel’s study will investigate how a sub-set of immune B cells reduces inflammation. In MS, the immune system damages tissues in the brain and spinal cord, and finding a way to reduce inflammation may be key to stopping disease progression. Dr. Dittel, PhD, is a senior investigator at the Blood Research Institute, BloodCenter of Wisconsin. The award was presented during the Research Programs Advisory Committee (RPAC) meeting in Washington, D.C. n
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.
MS Connection | 19
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MADISON, WI PERMIT NO. 1252
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HURRY! Register by November 30 to get a FREE long-sleeve commemorative T-shirt.
A Fun Ride A Great Cause JANUARY 26-28, 2017
CARTER, WISCONSIN
Join a fun weekend that is all inclusive and fully supported, including: • Guided rides on groomed trails • Meals at the resort and along the route • On-site mechanical support • Three-nights lodging at Potawatomi • Evening entertainment Carter Casino and Hotel • And more!
Register at: MSsnowmobiletour.org | 262-369-4400 | 800-242-3358 A fundraising event to benefit multiple sclerosis