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Spring 2014 michigan Chapter

MS Connection Newsletter National MS Society, Michigan Chapter • Mustang Raffle WIN a very special vehicle in celebration of 50 Years of Mustang! The National MS Society, Michigan Chapter is teaming up with Ford Motor Company to raffle off a very special vehicle in celebration of 50 Years of Mustang. Ford has generously donated this once in a lifetime vehicle and 100% of the funds raised will benefit the National MS Society’s mission to create a world free of multiple sclerosis (MS). For details about the car, visit RAFFLE TICKETS: $20 each Drawing date: Saturday, August 16, 2014 at 5pm – 5:30pm (EST) Ford Mustang Alley at the Woodward Dream Cruise – Ferndale, MI Winner need not be present to win. Some restrictions apply. See raffle terms & conditions on State of Michigan Raffle License #R24664

TO ORDER TICKETS NOW, VISIT To order raffle tickets by phone, call 1-800-243-5767 8am-8pm(EST), Monday-Friday

INSIDE 2&3 7 THIS ISSUE Annual Meeting Awards

Programs & Services: Partners in MS Care

8&9 14&15 Programs & Services: Upcoming Events

Research: The Promise of Myelin Repair


MS connection: Spring 2014

Mailing Label Changes

Please check the appropriate box below, correct the label then return to National MS Society, MI Chapter q Name change or misspelled q Address change q Remove from mailing list q Received more than one copy q Please send me my MSConnection via e-mail. My e-mail address is: ____________________________

Connect with us online: Michigan Chapter Like us: daVinciAwards Follow us: Watch us:

Annual Meeting Awards The Annual Meeting and Recognition Breakfast, held on Saturday, March 1st, awarded the Chapter’s top fundraisers and key volunteers. Congratulations to the following award winners: The George A.L. Gant Regional Volunteer Awards were created to express the Chapter’s appreciation to volunteers whose efforts have furthered the mission of the National MS Society on a regional level. • • • •

Southeastern Region: Shawn McGowan Western Region: Steve Stetler Northern Region: Suzette Cooley-Sanborn Eastern Region: Darlene Brown

The Richard Ennis Award was designed to honor an outstanding Chapter Programs and Services Volunteer who has demonstrated support and initiative in providing programs to improve the quality of life for people living with MS. • Roz Nadeau Public Official of the Year Award • Representative Matt Lori • Senator Roger Kahn The W.B. Doner Award was created to express the Chapter’s appreciation and recognition of a media representative who has gone the extra mile to promote the MS case in the media. • Jake Dunne of WLNS TV6 - Lansing The Corporation of the Year Award was created to express the Chapter’s appreciation and recognition of a company that stands out in support of our cause. • Real Estate One

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Shining Star Award - The National MS Society recognizes a team with the Shining Star Award for demonstrating creativity and exceptional leadership through fundraising and volunteer support. • The Fighting Shamrocks Rising Star Award – This award recognizes a growing commitment by an individual, team, or company that went above-and-beyond in their involvement with the MS movement. • ATO Walks Hard: Many Steps for MS Rookie Team of the Year – The National MS Society recognizes a first year team from 2013 for their outstanding fundraising and participant achievements. • Team Metric We Measure Up Mission Possible Triple Crown Award – This is given to a team that raises at least $1 for each of the 18,000 people living with MS in Michigan in three different events. • Ford Motor Company Mission Possible Team Award winners raised at least $1 for every person in Michigan living with MS to add up to a minimum of $18,000. • • • • • • • • •

Hacker Scramble Thrilla at the Villa Sam’s Club Cyclomaniacs Amazed by Amanda Team BASF Roz’s Rangers Comerica Bank Real Estate One

• The Fighting Shamrocks • Champagne & Marx • Circle of Friends • Team DOW • Team GM • Team Ford

Individual Mission Possible Award winners raised at least $18,000 personally. • Bruce Kantor

• Ely Tama

#1 Traveling Trophy Fundraising Teams • Walk MS: Team DOW • Bike MS: Team DOW/TCC • Golf MS: Team Ford

National Multiple Sclerosis Society Michigan Chapter 21311 Civic Center Drive Southfield, MI 48076 1-800-344-4867 Chairman: Michael Brady Chapter President: Elana Sullivan Editor: Sarah Borst Design: Graphinity, Inc. © 2014 National Multiple Sclerosis Society, Michigan Chapter 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 Multiple Sclerosis Society recommends that all questions and information be discussed with a personal physician. The Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The Society assumes no liability for the use or contents of any product or service mentioned.

4 Living with ms

CONNECT AT: The National Multiple Sclerosis Society’s website at connects people like yourself who are living with MS with the information, people and resources that can help you and your loved ones live your best lives. To that end, many exciting changes to the site have taken place to improve your ability to connect to:

INFORMATION Updated navigation, new content and improved searching help you find what you’re looking for faster.

EACH OTHER Our growing online community is even easier to access, making it easier for you to share your experience with others living with MS, healthcare providers and MS researchers.

THE MS MOVEMENT Several new features make joining the MS movement even more possible. These features include: a “My Profile” section where you can access your profile information, set preferences and track your involvement; a mobile-friendly design that lets you view the site from your

MS connection: Spring 2014

smartphone, tablet or other mobile device; and easier-to-read content and accessibility for anyone using assistive devices like screen readers.

You Talked, We Listened Many of you – people living with MS, friends and family members, event participants, volunteers, donors and professionals – contributed ideas and input toward the new site. You shared what information matters most to you, tested the site as it was developed and made suggestions – you even helped get rid of a few “bugs.” Now, the next generation of is designed to help you: n



Find relevant information, programs, services, and resources Connect with others, share information and get support Participate in events, advocate for change, raise awareness, champion research, and discover more ways to engage

Take some time today to tour the new site at, and let us know what you think. If you happen to find a bug that snuck through the cracks, let us know that too. n

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ATO Walks Hard: Many Steps for MS It all started with a phone call. The topic? What could the members of Alpha Tau Omega fraternity at Grand Valley State University do to better the world around them? The answer, ATO Walks Hard: Many Steps for MS. On Thursday, March 6th, 20 men from the Alpha Tau Omega Fraternity set out on a 160 mile journey that they completed just eight days later. Braving the elements of the Michigan winter and below freezing temperatures, these inspiring young men gave up their spring break to raise awareness

and funds for the National Multiple Sclerosis Society. The walk took them from the campus of Grand Valley State University, where they all attend as students, to Traverse City. In 2013, the ream raised over $15,000. This year, they have more than doubled this by raising over $31,000! ATO Walks Hard: Many Steps for MS was given this year’s Rising Star Award at the Annual Meeting & Recognition Breakfast which recognizes a growing commitment by an individual, team, or company that went above-and-beyond in their involvement with the MS movement. ATO is America’s leadership fraternity. Founded at Virginia Military Institute in 1865 on the principles of fellowship, scholarship and character, Alpha Tau Omega is building tomorrow’s leaders of America, today. It’s easy to see that the members of the Kappa Lambda chapter at Grand Valley State University live these values and why they were recent winners of the True Merit award, given to the best ATO chapters across the nation.

The men of Alpha Tau Omega at their final destination in Traverse City


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Partners in MS Care Chapter Announces Partners in MS Care in Michigan Partners in MS Care is a National MS Society initiative to recognize and support quality MS care by encouraging strong partnerships between MS clinicians and the Society. The Society believes that people living with MS receive optimal care and support when these collaborative relationships exist.

Ribbon-cutting at chapter’s first Partner in Neurological Care, Memorial Neurological Institute, Owosso, MI Michigan Centers for Comprehensive Care:

Who are Partners in MS Care? Partners include health care professionals in the areas of neurology, mental health and rehabilitation, as well as sites that provide multi-disciplinary health care. Partners demonstrate deep knowledge and experience in MS care, and have a special interest in treating people living with multiple sclerosis.

• Michigan State University MS Clinic (East Lansing)

Fortunately for Michigan residents, there are four Centers for Comprehensive Care and one Partner in MS Neurological Care. According to Rose Taylor, Vice President of Programs and Services, “This designation is significant, and is reserved for only the best care providers. There are numerous requirements, with local and national review committees involved. The screening process is very robust and in most cases takes many months. We are thrilled to be working with these fine institutions.”

Partner in MS Neurological Care:

• Henry Ford Hospital MS Center (Detroit) • Wayne State University MS Clinic (Detroit) • University of Michigan MS Center (Ann Arbor)

• Memorial Neurological Institute (Owosso) • There are three Partners who are in the final stages of the approval process. They include two Neurology Partners and our first Mental Health Partner. To learn more, please contact your MS Navigator at 800-344-4867, option 1.


Upcoming Events North American Education Program (NAEP) - Making Treatment and Lifestyle Decisions: Thinking About Benefits and Risks These events will include a video presentation followed by a question and answer session. The presentation will highlight the significant progress made in developing new treatments and focus on how people with MS evaluate benefits and risks when making treatment and lifestyle decisions. The video will feature healthcare professionals from the Mellen Center and Montreal Neurological Institute Hospital. Saturday, May 10th, 9:30am – noon at Mercy Health Lacks, Grand Rapids, MI Herman C. Sullivan, M.D. will facilitate the question and answer session. This program is co-sponsored by Mercy Health, the National MS Society Michigan Chapter, and the Grand Rapids MS Self Help Group. In addition to the NAEP presentation, there will be representatives from St. Mary’s and the National MS Society available to expand on upcoming programs and services. For more information or to register for this program please call 800-344-4867, option 1. Saturday, July 19th, 9:00am North American Education Program Making Treatment and Lifestyle Decisions: Thinking About Benefits and Risks (see NAEP description above)

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Lauren Hansen, Research Advocate, will facilitate the question and answer session in the Anderson Building at Allegiance Health Hospital, Jackson, MI. For more information please contact Christy Bomba at 989-249-1184. Saturday, May 17th, 9:00am Upper Peninsula Spring ConferenceMaking Treatment and Lifestyle Decisions Northern Michigan University, Marquette, MI Please join us as we learn about resources and making lifestyle decisions. Bonnie Brewer, Registered Dietician, will discuss nutrition and how to best determine the healthiest choices for you. The North American Education Program – Making Treatment and Lifestyle Decisions with Toni Kroll, R.N. as the facilitator will follow. See NAEP description above. The conference will conclude with a presentation from UPCAP 2-1-1 to provide information and resources that may be accessed throughout the U.P. region. Lunch will be provided. For more information or to register for this program, please call 800-344-4867, option 1. Saturday, June 7th in Troy, MI What’s New on the MS Research Horizon Come learn the latest in the exciting world of MS research! Presenter Paula Dore-Duffy, Ph.D., is a researcher at Wayne State University in Detroit and is a member of the National MS Society Programs Advisory Committee. She recently completed a pilot project investigating stem cells derived from human fat cells for their potential to repair damage in MS. Dr.

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Dore-Duffy will review the ever evolving field of MS, including current research progress and future avenues of promising inquiry. Look for a brochure and registration information on the chapter website at the end of April. Statewide Assistance Program MS can create a range of challenges, including financial ones. If you have a confirmed diagnosis of MS and can demonstrate financial need, we may be able to help. The National MS Society’s Financial Assistance Program can provide information and connect you to community resources and programs. In many cases we can provide financial support for eligible items and services such as car modifications, mobility equipment, medical transportation, short term home care, emergency assistance and more. Please call 800344-4867, option 1, to request an application or to speak with an MS Navigator who can answer questions regarding the program.


MS Activists Speak Up MS activists tackled Michigan issues that impact people with MS at the sixth annual MS State Action Day on March 26, 2014. Work to improve the availability of home care was advanced through our support for $26 million increased funding for MI Choice, the Home and Community Based Medicaid Waiver program that serves people who otherwise would live in a nursing home. We advocated for a $5 million increase for Meals-on-Wheels

and home care programs that serve people aged 60 and older. Delegates expressed support for a bill that would increase the fines for parking in posted handicap parking spaces. They also provided legislators and their staff information about the resources and opportunities of the National MS Society, Michigan Chapter.

Issues Addressed on Capitol Hill At the 2014 MS Public Policy Conference (PPC) in March, MS activists who gathered in Washington, D.C. pushed forward major initiatives that will impact disease research and support for those living with progressive MS. They spoke boldly to members of Congress about the importance of funding for the National Institutes of Health (NIH), MS research in the Congressionally Directed Medical Research Programs (CDMRP), and the Food and Drug Administration (FDA). Access to complex rehabilitation technology important to people living with progressive MS would be improved through the passage of H.R. 942/S. 9480. Activists explained the importance of this equipment for people who need the equipment funded through Medicare. We are very proud that Jennifer Digmann, a Michigan MS activist and selfhelp group leader served on a panel that helped over 300 PPC delegates prepare for their Congressional appointments. To find out how to get involved in MS advocacy visit


MS connection: Spring 2014

Ways to Give

Riding with hope By M arleigh Brown

When I was diagnosed with multiple sclerosis four years ago, I cried. I cried a lot. Not in public, and not in front of my three young children. But I cried privately, mourning the loss of the woman I once was. I was distraught and angry, and everything in between. Most of all, I was scared. Scared that MS was taking my healthy body and mind, and with them, my hopes and dreams. Yet today, in spite of those emotions, I also feel lucky. Lucky, because I have hope.

This gives me hope that someday soon we will find a way to end MS forever and repair the damage already done. With this hope, we may all be scripting a different ending to our stories. To truly understand hope, I need to tell you a story about a special woman named Ida. I participate in Bike MS with her photo in my pocket. It was taken in April 1937 when she was just 23 years old–a beautiful girl, vibrant and alive. She had been spring skiing at Tuckerman’s Ravine, and is leaning on a clunker of a car facing into the sun. She’s wearing a halter top and shorts, and black

I Ride with MS participant Marleigh Brown crosses the finish line. I Ride with MS is proudly supported by Genzyme, a Sanofi company. Participant jerseys are provided by Primal Wear, the official cycling apparel partner of Bike MS. boots with dark socks, which accentuate her strong muscular legs. She had an unruly mane of dark curly hair in those days. A talented painter, Ida had a funky style all her own. She smiled like a lady, but had her hand on her hip and her chin lifted, giving the camera a bit of attitude. This woman is my grandmother, but not the grandmother I knew. The picture was taken six months before she married and went on to become a mother of six. It was taken a whole decade before MS turned her life upside down, chiseling away at her hopes and dreams. Piece by piece. Attack by attack. With nothing to stand in its way. Ida’s diagnosis took a while without MRIs and the understanding of the disease we have today. At first, she didn’t tell anyone. But soon, she wasn’t able to hide her symptoms. Why did | 1-800-344-4867


she choose to say nothing, to do nothing about her MS? Because there was nothing she could do. Because back then, there was nothing anyone could do–no research, no treatments, no disease-modifying drugs. Back then, there was no hope.

the wide selection of medications available to slow progression by injection, infusion, even oral pill, and also for the drugs to manage symptoms and attacks. All of these treatments were only discovered in the last two decades, and over half were discovered in the last decade alone.

When one of my children raises that dreaded question, ‘Mommy, am I going to get MS?’ I hope to answer with conviction, ‘No. Absolutely not.’

This gives me hope that someday soon we will find a way to end MS forever and repair the damage already done. With this hope, we may all be scripting a different ending to our stories. When one of my children raises that dreaded question, “Mommy, am I going to get MS?” I hope to answer with conviction, “No. Absolutely not.”

I knew Ida simply as Grammy, and I remember driving to the nursing home with my father to pick her up one Thanksgiving. I can still see her waiting for us, like a snapshot in my mind, lying in her hospital bed, staring silently toward the window. I watched as my father lifted her from her bed to her wheelchair, carrying her the way you’d cradle a helpless child, or the way you’d hold a mother who was living with MS. This is the grandmother I knew, the MS I knew. And the line was so blurred that they were one and the same. I even remember asking my father, if I was going to get MS someday. I don’t remember his exact words, but here we are today, thirty-something years later. I was diagnosed with MS at age 36—the very same age as Ida. The similarities in our stories are unnerving, but I focus on the differences in our stories instead. I am lucky that my doctors caught my MS early with the help of today’s MRIs. And I am grateful for choices—for

Hope is a beautiful thing. And today we have hope. Hope that my grandmother didn’t have. And hope that all of our children will know a world free of MS. n These Opening Remarks were delivered by Marleigh Brown at the 2013 Bike MS Cape Cod Getaway. Brown lives in Massachusetts, where she participates in the I Ride with MS program, which has expanded across all 100 Bike MS events in 2014, thanks to the support of Genzyme, a Sanofi company and Primal Wear. Learn more at


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Fundraising Do It Yourself Fundraising is an opportunity for people with a deep commitment to the MS Cause to raise awareness and critical funds. In 2013, more than a dozen golf outings were held by individuals and companies. Visit our website for details for the 2014 upcoming events as they become available. We hope you’ll consider hitting the links by joining one or more of these Top 10 DIY golf outings. Hacker Scramble –$22,786 L. Barge Golf Outing - $17,170 One Eye Open Golf Outing - $9,500 If you are interested in hosting your own DIY event, please contact Tammy Willis at 517-646-0807 or

Walk MS Dates: April 26, 2014 Midland, Central Middle School Lansing, Potter Park Zoo April 27, 2014 Detroit, Comerica Park May 3, 2014 Bloomfield Hills, Covington Districtwide 3-8 School Kalamazoo, Kalamazoo Institute of Arts May 10, 2014 St. Clair, Riverview Plaza Frankenmuth, Heritage Park

May 17, 2014 Wyandotte, Yack Arena Grand Rapids, Aquinas College June 21, 2014 Dexter, Hudson Mills Metro Park June 28, 2014 Traverse City, Grand Traverse Civic Center September 6, 2014 Grand Haven, United Methodist Church of the Dunes September 7, 2014 Milford, Kensington Metro Park September 14, 2014 West Branch, West Branch Senior Center Marquette, Northern Michigan University

Bike MS Dates: June 7-8, 2014 West Michigan Great Lakes Breakaway Ride, Holland July 12-13, 2014 Mid Michigan Great Lakes Breakaway Ride, Metro Detroit to East Lansing September 13, 2014 Fall Breakaway Ride, Brighton September 27-28, 2014 Bavarian Breakaway Ride, Frankenmuth | 1-800-344-4867

Every Connection Counts! Thank you to everyone who “showed their ORANGE” during MS Awareness Week! We appreciate each and every one of you for helping to increase awareness of MS during this exciting week. And, this is just the beginning of a year-long effort to educate, engage and connect. Listed below are just some of the ways people joined the movement: • We kicked off the week with our Annual Meeting & Recognition Breakfast where we recognized our top fundraisers and volunteers • Many Walk and Bike MS teams kicked off their fundraising and team recruitment

13 • WJR Radio: Interview with Elana Sullivan on the Paul W. Smith Show to kick-off MS Awareness Week • TV News Channel 3, Kalamazoo: Interview with Kalamazoo Walk MS Committee Chair Amanda West, and former Michigan Chapter board member Barb Barton • Alpha Tau Omega (ATO) Walks Hard: Many Steps for MS – 20 men walked 160 miles from Allendale, Michigan (Grand Valley State University campus) to Traverse City, Michigan. This group arrived in Traverse City on March 6. All members gave up their spring break for this journey and raised over $30,000. • Crest Lincoln Dealership in Sterling Heights turned orange for the week

• On Tuesday March 4, Ruby Tuesday restaurants donated 20% of sales to the Michigan Chapter • General Motors turned the Renaissance Center in Detroit orange for the week • Mojo at Q106 FM Lansing, supported us on the radio • WLNS TV6 in Lansing sported orange during their morning show • WXYZ Channel 7, Detroit: 7 Action News at 5pm anchors Jeff Vaughn and JoAnne Purtan wore orange and mentioned MS Awareness Week

• Edible Arrangements partnership – During the month of March, $5 was donated to the Michigan Chapter with the purchase of an Orange Citrus Blossom arrangement. It was such a great week of connections, and every connection counts! For additional information about 2014 MS Awareness Week activities, please visit


MS connection: Spring 2014


The promise of myelin repair by Bruce Bebo, P h D

When I started as a laboratory immunologist more than 20 years ago, the major focus in MS research was searching for ways to turn off destructive immune attacks, which resulted in immune-based therapies that can help control relapsing forms of the disease for many people. While researchers continue to look for ways to improve the treatment of relapsing MS, the focus in MS research is shifting to finding strategies that stop MS progression and repair the damage that causes disability. This is relevant to people with all types of MS, but especially to people with progressive forms of the disease.

Dream to reality People are excited by the possibility, once only a dream, that we will find a way to repair damaged myelin. This would be important for restoring function, and many believe that re-establishing the protective myelin coating on axons may even shield them from further harm. Bruce Trapp, PhD, and his team at Cleveland Clinic have been working hard to advance the field of nervous system repair. They have

shown that new MS lesions undergo natural repair much better than older (“chronic”) ones. They also reported that the problem is not a lack of cells capable of making new myelin in old lesions, but their inability to produce new myelin. Work is now underway to figure out what the impediment is and how to jump-start the repair process. What makes this work on MS lesions intriguing is that it straddles two different parts of the brain – the so-called white matter and gray matter. The team found that chronic lesions in the white matter don’t remyelinate. But chronic lesions in the gray matter show robust remyelination – even in people living with MS into their 70s. This opens up opportunities to compare differences in the two regions and figure out how to make white matter repair itself like gray matter. In related research, Larry Sherman, PhD, and colleagues at the Oregon Health & Science University found that fragments of a molecule called hyaluronic acid (HA for short)

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accumulate in chronic white matter lesions and could be at least partially responsible for the stalled remyelination. They have identified an enzyme that chews the HA into fragments and have shown that inhibitors of this enzyme promote remyelination. They are now trying to figure out exactly how this works, in hopes of developing treatments that promote remyelination.

More possibilities Increasing evidence suggests that female sex hormones might be neuroprotective and/ or promote repair of myelin. I saw two very interesting presentations last October at ECTRIMS, the world’s largest gathering of researchers, which reported that different estrogen-like molecules could stimulate production of new myelin. Both of these projects are supported by the Society. Another strategy to repair myelin in MS is to introduce new repair cells into the system via transplantation. Of note was a presentation by investigators from Milan, Italy, who used mouse skin stem cells and forced them to become myelin-making cells. After these cells were infused into the spinal cord, they promoted recovery in mice with the MS-like disease EAE. The team found that these cells didn’t actually make myelin themselves, and are starting to identify the growth factors they release that stimulate natural repair and also reduce inflammation. More work is needed, but this type of research gives hope that this strategy may eventually help restore lost function.

Updates on two repair therapies already being tested in human clinical trials were also presented. The first is called anti-LINGO. LINGO is seen in neurons and myelinproducing oligodendrocytes, and blockading this protein with anti-LINGO has been shown to promote remyelination in animal models. An investigative team from Biogen Idec reported that anti-LINGO was well tolerated in people and that no negative effects were seen. This means the company will likely keep pursuing clinical development of this promising repair candidate. In other news, investigators from the Mayo Clinic are developing an agent called rHIgM22 that has been shown to promote extensive remyelination in several different animal models of MS. This agent is now in early clinical trial testing in MS. We’re not there yet, but recent and ongoing research holds the promise of uncovering new targets for stopping progression and stimulating repair. n Bruce Bebo, PhD, is the Associate Vice President of Discovery Research at the National MS Society. Originally published at

21311 Civic Center Dr. Southfield, MI 48076

Facebook As of April 7, 2014, Walk MS, Bike MS, and MS Awareness Week Facebook pages merged to the Michigan Chapter Facebook page at What does this mean for you? If you “liked” Walk MS, Bike MS or our MS Awareness Week Facebook pages, you will no longer receive information in your newsfeed from these pages. All newsfeed information will be coming from the National MS Society, Michigan Chapter Facebook page. There is no action required on your part. This consolidation supports the crosspromotion of special events, strengthening of the brand and simplified access to information for our members about the

National MS Society, Michigan Chapter. One Facebook page allows us to be more strategic and timely and will provide you with information depicting the entire scope of what we do to assist the over 18,000 people living with MS and their families in Michigan. We hope you will continue to “like” us on Facebook and share information with your friends and family! If you have questions, please contact Cheryl Rothe at 248-936-0360 or

MS Connection