SUMMER 2012 UPPER MIDWEST CHAPTER
MS Connection Newsletter
INSIDE 04 THIS ISSUE
HOW TO TALK ABOUT MS WITH YOUR CHILDREN
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08
12
VITAMIN D AND MS
HEALTH INSURANCE EXCHANGES
YOUR STORY, YOUR VOTE
02 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. The National MS Society’s medical advisors recommend that people with MS talk with their health care professionals about using these medications and about effective strategies and treatments to manage symptoms. If you or someone you know has MS, please visit nationalMSsociety.org or call 800-582-5296 to learn more.
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Can you help us? If you’re able to make an in-kind donation to the Upper Midwest Chapter, contact Lindsay at 612-335-7976, 800-582-5296 (option 2) or lindsay.anderson@nmss.org. To see the full in-kind list, visit MSsociety.org and click “Donate.” n
Electronic readers (Kindle, Nook)
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Power pallet jack
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File folders
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Bike rack
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Digital photo printer
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Gift cards (restaurants, convenient stores, etc.)
National Multiple Sclerosis Society Upper Midwest Chapter 200 12th Ave. S. Minneapolis, MN 55415 800-582-5296 Chairman: Michael V. Schrock Chapter President: Holly Anderson Editors: Anna Kucera, Maggie Flanagan Design: Sue Schweitzer © 2012 National Multiple Sclerosis Society, Upper Midwest Chapter
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Concert and event tickets
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Jump drives (portable storage devices)
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Lanyards and clear name badges
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Gift basket items for silent auctions
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Dry-erase board
Information provided by the National MS 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 Society recommends 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 or any product or service mentioned.
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Letter from the president
Make your voice heard — vote! Connect with us online If you wish to receive MSConnection via email, please let us know at editor@MSsociety.org. Upper Midwest Chapter MSsociety.org editor@MSsociety.org Like us: facebook.com/ UpperMidwestMS Follow us: twitter.com/ UpperMidwestMS Watch us: tinyurl.com/ UpperMidwestVideos
It’s high summer, and I’m sure the last thing on your mind is what you’re going to do Tuesday, Nov. 6 — Election Day. Because voting is one of the most powerful ways you can make a difference in your community, I want to be sure each and every one of you is registered and ready to address the issues that affect you and your family. It’s so important people touched by multiple sclerosis share their stories and views with their elected officials and take part in choosing the officials who best represent them. Please read the article on page 12 to find out how you can get more involved with the Upper Midwest Chapter’s voter outreach efforts and visit tinyurl.com/MSsocietyVote throughout the summer and fall to learn about candidate forums happening in your community. Voting is one of the easiest and most important ways to make your voice heard, and our elected officials need to hear it!
Sincerely,
Holly Anderson Upper Midwest Chapter President
You may have noticed MSConnection got a facelift! Please provide any feedback to editor@MSsociety.org.
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MS connection: Summer 2012
was never a question about whether or not to share my MS status with them — it was too big to hide. One of my first memories of the girls really understanding I wasn’t entirely well was when I had been reduced to tears by some incident. One of my daughters came to where I was sitting on the ground with my head in my hands and adjusted my collar, saying, “Here you go, Mommy. I’ll take care of you.”
Julie Stachowiak with her two daughters
LIVING WELL WITH MS
How I communicate about MS with my children By Julie Stachow iak, Ph.D. I have twin girls who are six years old. I was diagnosed with multiple sclerosis a couple of years before they were born, so it has always been present in our little family. I guess there
The experts will tell you (and I can confirm) young children pick up when a parent is not feeling well. Child psychologists will tell you this can manifest as increased clinginess, regression in terms of speech or potty-training progress or reversion to younger behavior (such as needing a pacifier). Older children may get worried that something terrible is happening — that their parent will die, that they will die, that they did something bad and whatever is going on is their fault. This may turn into sleeping issues or nightmares, withdrawing emotionally or acting out at school.
I have chosen to be very open with my daughters ... I tell them when I feel better and I make sure we do something fun and active during those times.
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Those same experts say we should answer all questions about our MS honestly and directly, adjusting information as they get older. That may or may not work for you. I know some people choose to keep their MS from their children until they reach a certain age or something happens where it must be revealed. I think it’s an individual choice. We all have to make our own way as parents. I’ve chosen to be very open with my daughters. I tell them when I’m tired and I tell them when I feel better, and I make sure we do something fun and active during those times. We discuss
MS and I’ve tried to explain to them what is happening in my brain. They know I don’t like it when music is too loud or when we’ve been outside in the sun for too long. I won’t say I’ve handled it perfectly, but my daughters seem slightly less self-centered than some of their classmates. They’re not afraid of people who are different — we have friends with Down syndrome, who use wheelchairs and who are hooked up to oxygen. My girls don’t seem to see any of it, just the person they want to tell about their Halloween costume or their newest toy. I’m proud of that. n
Society resources for families The Society’s “Family Matters” Web page at nationalMSsociety.org/FamilyMatters contains links to helpful brochures, programs and resources. Join the online “Family Matters” community at MSconnection.org.
Diagnosed with MS in 2003, Julie Stachowiak, Ph.D., is the author of “The Multiple Sclerosis Manifesto” and ms.about.com.
Each issue of Keep S’myelin has fun, engaging activities to help parents and children learn about and discuss MS together. Go to nationalMSsociety.org/keepsmyelin for back issues and subscription information. Search for and download Plaintalk — A Booklet about MS for Families for information on talking about MS with family members and Someone You Know Has MS for children at nationalMSsociety.org. Originally published at blog.nationalMSsociety.org.
06 Research
Connecting the dots: Vitamin D and MS by Dr. Linda Buchwald Exciting new research is beginning to identify both genetic and environmental factors involving vitamin D that could increase one’s risk for developing MS and could influence disease progression. Research is also targeting vitamin D as a potential therapy, with clinical trials being planned or already underway to determine whether it can prevent or treat MS.
The latitude effect There’s a long-standing observation that population rates of MS increase the farther away one is from the equator and from the sun,
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exposure to which is our major source of vitamin D. Could the two be connected? Researchers have been exploring that very question. Studies of who gets MS have confirmed higher levels of sun exposure and higher blood levels of vitamin D were both associated with decreased risk of a first demyelinating event — often the first indicator of developing MS. In addition, there’s evidence high levels of vitamin D in utero and during adolescence and adulthood also have a positive effect on reducing the risk of developing MS. Other research suggests vitamin D may have an effect on the inflammatory processes that occur during MS flares. In a small safety study at St. Michael’s hospital in Toronto, researchers found immune T cells involved in MS attacks were suppressed in people who had higher blood levels of vitamin D.
Genes, vitamin D and MS Studies done in families where multiple individuals have MS have resulted in new information that potentially links genetic factors related to vitamin D activation. In December, Canadian and British researchers published the results of a study that set out to look for rare genetic changes that could explain strong clusters of MS in some families. They studied DNA in 43 individuals selected from families with four or more members with MS. The team compared the DNA changes they found against existing databases, and identified a change in the gene CYP27B1 as being of
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interest. The CYP27B1 gene plays an important role in converting vitamin D to a biologically active form. The researchers then looked for the same rare gene variant in more than 3,000 families of unaffected parents with a child with MS. They found 35 parents who carried one copy of this variant along with one normal copy. In every one of these 35 cases, the child with MS had inherited the mutated version of the gene.
The road forward Further research now underway will determine if vitamin D may have preventative as well as disease-modifying effects. In EAE, the animal model of MS, vitamin D supplementation prevents and slows the progression of the disease, while vitamin D deficiency worsens the disease. We also know that high vitamin D levels in people with MS have been associated with decreased risk of exacerbations and less severe disability. To what extent vitamin D can influence the course of MS once someone’s been diagnosed is still unclear; however, research is being planned to clearly define the role of vitamin D in the prevention, progression and treatment of MS. For instance, researchers at Johns Hopkins University are leading a multicenter, controlled clinical trial funded by the National MS Society to determine whether high-dose vitamin D added to standard therapy with Copaxone further reduces disease activity in people with MS. (To learn more about this trial, which is still recruiting participants, visit clinicaltrials.gov/ct2/show/NCT01490502.)
07 What is clear is vitamin D deficiency is extremely common in many parts of the country. The optimal approaches for vitamin D supplementation in the general population and in those with MS have not been established, yet it is important everyone take a minimum daily amount of vitamin D supplement. I recommend at least 2,000 IU and no more than 4,000 IU per day for my own patients with MS; however, official recommendations are lower (see ods.od.nih.gov/factsheets/ VitaminD-QuickFacts), so ask your healthcare providers what they recommend for you. Due to the inherited risk of MS and the possible preventative effect of vitamin D supplementation, also discuss the possible implications of vitamin D deficiency and supplementation for your children. n Dr. Linda Buchwald is chief of Neurology at Mount Auburn Hospital in Cambridge, Mass., and the medical director of the Mount Auburn Hospital Multiple Sclerosis Care Center. She’s a trustee of the National MS Society, Greater New England Chapter and Clinical Advisory Committee member. This article originally appeared in the Greater New England Chapter’s Spring 2012 MSConnection.
08 NEWS
Where we are: Health insurance exchanges By M arcella Dur and If you had to create a way for millions of people to learn everything they need to know about health insurance, so they could choose a policy that’s right for them and get properly enrolled with top-notch customer support, how would you do it? That’s the question state lawmakers are facing as they consider how to organize their state’s health insurance exchange, a major component of the Affordable Care Act (ACA) due to begin operation by 2014.
What they are Health insurance exchanges are Web-based “marketplaces” where individuals and small businesses can compare and purchase affordable and qualified health benefit plans. Existing models have been compared to websites like travelocity.com or Consumer Reports’ product ratings, which offer consumers a choice of options, based on their needs and preferences. In addition to information about the price of various plans, the exchanges will be able to tell
MS connection: Summer 2012
people if they qualify for tax credits in advance to make the plans affordable. Exchanges also increase competition among insurance companies, which should bring down costs. Members of Congress and other federal employees currently get their health insurance from exchanges — an indication that exchanges will remain good resources for finding quality, affordable coverage with good benefits and protections for everyone. The ACA has established standards that exchanges must meet, but most of the planning and implementation will take place at the state level. State lawmakers can either establish their state’s own exchange through legislation or allow eligible residents to use an exchange run by the federal government. Many exchanges are still “under construction” as states across the nation debate what will work best for them.
Members of Congress and other federal employees currently get their health insurance from exchanges — an indication that exchanges will remain good resources for finding quality affordable coverage.
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What’s included Some important features of exchanges that will help people with MS and others when shopping for health coverage include: n
User-friendly application and enrollment processes. A single, standardized application form and a “no wrong door” approach determine programs for which people are eligible and direct them through the process with a minimum of red tape.
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Security. For many people, if they lose their job, they lose their insurance, too. Exchanges guarantee a secure place where anyone who’s not already covered through an employer plan or Medicare can obtain insurance. Moreover, by law, insurance plans offered through exchanges will not be able to deny coverage because of pre-existing conditions like MS.
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Accessibility. Help with selecting and enrolling in a plan will be available to consumers over the phone, online through the exchange’s website and in person through specially trained “navigators.” Traditional insurance brokers and agents will continue to play a role by helping business owners and other customers purchase health coverage. All services of the exchange should be available to all persons eligible for its products, regardless of any disabling condition. That includes overcoming barriers due to language, as well as physical or cognitive disabilities. Reassurance. Exchanges will offer plans that allow people to keep their current healthcare providers. This is important to people with
MS or other chronic conditions, who often have established a solid relationship with their doctor, nurse or therapist. n
Transparency. By law, details about all plan options and covered benefits, including out-of-pocket costs and benefit exclusions, must be made clear. Greater transparency in coverage will help consumers make “apples to apples” comparisons between options from insurers competing on a level playing field.
Where we are now To find out more about your state’s plans for establishing a health insurance exchange, visit the Kaiser Family Foundation’s interactive website at statehealthfacts.org or healthcare.gov/news/factsheets/2010/07/ esthealthinsurexch.html (click the “state-by-state” link). The Society also has a Web page devoted to ACA FAQs (frequently asked questions) at nationalMSsociety.org/ ACAFAQS. n Marcella Durand is the associate editor of Momentum, the Society’s national magazine. Visit nationalMSsociety.org/Momentum.
10 Volunteer
Volunteer spotlight Not long after being diagnosed with MS in 2008, LaWanda Rock of Williston, N.D., started the Williston MS group, the first in its area. MS group leaders are vital in their communities and to the MS movement — they help create valuable connections between people experiencing similar challenges (and triumphs). “It’s really nice to be involved with other people who understand what it’s like to live with MS. Letting each other know we are there for one another and not alone is very rewarding.” LaWanda not only spends time working in a volunteer position; she’s also a full-time mom and full-time student at North Dakota State University. Additionally, she’s taken her dedication to the MS movement even further by forming a Walk MS team in Fargo. In her spare time, she spends as much time with family as possible. Together, they enjoy hunting, fishing and archery, being outdoors and watching movies. “It’s very important to me my daughter sees me being active, if not physically, then mentally. Hopefully, one day we won’t have to worry about that when there’s a cure for MS.” Thank you, LaWanda, for all you do! n
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Volunteer opportunities The Upper Midwest Chapter is always looking for volunteers with a variety of skill sets. Volunteers help stretch donor dollars and build a stronger organization. Volunteer and move us closer to a world free of MS! Share your time and expertise at Majestic Shores Resort, a week long getaway in Maple Lake, Minn., for adults living with MS, Aug. 19–23. Positions range from serving meals to instructing or supervising day-time activities. Help out for just a few hours or all week long! Leadership fundraising events are hosted in Minneapolis, Minn.; Des Moines and Cedar Rapids, Iowa; and Fargo, N.D. Each event includes a sit-down meal, auction and keynote speaker. Join a volunteer committee and help make these special events successful! There are many ways to get involved no matter where you live. For more information or to sign up, call 800-582-5296 (option 2). n
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GIVING
Bike MS participant joins Lawry Circle Jim Steiner first rode Bike MS: TRAM Ride in 1994 because it sounded like a fun getaway for him and his wife Barb. Over time, he began to feel a powerful connection to the MS movement as he met people with MS and saw the challenges people face living with the disease. “Every curb, every door, every step can be a challenge when you have MS,” said Jim. Now, when people ask Jim why he rides Bike MS, he tells them “I ride because I can and because I have a true passion for this cause. It’s become part of my life and who I am.” And, it helps that his fellow TRAM riders feel like family after 18 years on the roads and trails together. When Jim and Barb were writing their wills, their attorney asked them about including charity. It was an easy decision to include a gift to the National MS Society in their will. Jim said, “I can absolutely trust the money will be spent wisely. Some charities are ‘heavy on top’ and spend a lot on administration. The Society uses the funds wisely for the cause.” As members of the chapter’s Lawry Circle, a group
11 of donors who have included the National MS Society in their will, trust or estate plan, Jim and Barb Steiner continue to demonstrate their extraordinary commitment to a world free of MS. For more information on how you can join them by making a gift in your will or estate plan (bequests, gifts of life insurance or retirement assets), please contact Shannon at 612-335-7928, 800-582-5296 (option 2) or shannon.wolkerstorfer@nmss.org. n
Congratulations to Walk MS team Popa’s Pavement Pounders Congratulations to team Popa’s Pavement Pounders, who recruited the most walkers during the weeklong Walk MS recruitment contest held in February 2012. This year, 24 members walked toward a world free of MS in the Twin Cities. Thank you Popa’s Pavement Pounders for being a leader in the MS movement!
12 Advocacy
Your vote, your story makes a big difference When people with MS share their stories and vote, the important issues people with MS face are more likely to be represented. It’s incredibly important people affected by multiple sclerosis share their views with their elected officials, and take part in electing the officials who best represent them. Sharing your story is easy during campaign season! In the past, you’ve likely received a phone call or a knock on the door from a candidate. Turn these moments into opportunities to share your connection to MS and talk about an issue that affects you or your family. Similarly, keep your eye open for candidate forums happening in your community by looking in your newspaper or visiting your candidate’s website. Even if you don’t consider yourself to be very “political,” a forum is an excellent place to learn more about issues that affect you and your neighbors. Learning as much as you can will make you a more informed voter. Voting is one of the most significant and easiest ways to make your voice heard in your community and beyond. Plus, voting is a way to stay engaged with your community.
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Election Day is Tuesday, Nov. 6. If you have questions about voting and elections, check out these resources: n
National MS Society, Upper Midwest Chapter (tinyurl.com/MSsocietyVote)
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Your local Secretary of State’s office
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League of Women Voters (lwv.org)
If you’re interested in helping with the chapter’s voter outreach efforts or have questions, contact Jenna at 612-335-7981, 800-582-5296 (option 2) or jenna.washnieski@nmss.org. n
Call for board nominations The governance committee is considering candidates to serve on the Upper Midwest Chapter Board of Trustees. To propose a candidate, please write to Sue Christensen, chair of the governance committee, by Aug. 10, 2012. Mail nominations to 200 12th Ave. S., Minneapolis, MN 55415. The committee will select the best-qualified candidates and present a slate of nominees at the next annual meeting. Nominees will not be taken at the meeting.
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Fundraising events
Join renowned guitarist at on the move luncheon Mark your calendars for the 13th annual On the Move Luncheon Wednesday, Aug. 15, 2012, at The Depot in Minneapolis! The luncheon will feature a live and silent auction, along with keynote presenter Billy McLaughlin and 2012 On the Move Leadership Award winner Erin Weber. Billy McLaughlin is an internationally recognized guitarist, composer and inspirational performer. He’s the recipient of three National Campus Entertainer of the Year Awards, five Minnesota Music Awards and the Hall of Fame Achievement Award. In 1999, McLaughlin watched his career crumble due to a little-known neuromuscular disorder called focal dystonia. After several challenging years, he relearned his instrument left-handed. Now an awareness ambassador for the disease, McLaughlin won the 2010 Public Leadership in Neurology Award. Seats are $100 and available to purchase online at nationalMSsociety.org/OTM. Companies can sponsor tables for $2,000 and will receive a list of benefits for their sponsorship.
Billy McLaughlin, internationally recognized guitarist, relearned his instrument left-handed after several challenging years following a neuromuscular disorder diagnosis. Want to get more involved? Join the volunteer committee and help make important decisions about the luncheon. For more information, contact Lindsay at 612-335-7976, 800-582-5296 (option 2) or lindsay.anderson@nmss.org. n The Upper Midwest Chapter hosts three other luncheons and a wine-tasting event. Visit MSsociety.org and click “Fundraising Events” to learn more.
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RESEARCH
The road of a researcher By M arcella Dur and Richard Ransohoff, M.D., began his long research career with a Harry Weaver Neuroscience Award from the National MS Society. “There wouldn’t have been a career, otherwise,” he Richard said. “I had no research Ransohoff, M.D. track record — the Society really took a chance on me.” It was a chance that paid off big time. Dr. Ransohoff’s research into the role of “chemokines,” messenger proteins that play a role in the immune system, may lead to new MS therapies. For his groundbreaking research, he was chosen by his peers as the 2012 John Dystel Prize recipient. The prize is given jointly by the Society and the American Academy of Neurology.
The role of chemokines In 1993, not long after he received the Weaver Award, Dr. Ransohoff discovered chemokines play an important role in MS.
He and colleague Mari Tani, M.D., had been studying mice with EAE, an MS-like disease, when they found that astrocytes, a type of brain cell, were producing chemokines that attracted immune cells to the mice’s brains. “It was like the disease process sat up and talked to us,” he said. His team went on to study chemokines in people with MS, where they found chemokine receptors on cells involved in the immune attack.
Paving the way Dr. Ransohoff also showed chemokines may help determine if nervous system repair occurs during the course of MS. By deactivating a chemokine receptor called CXCR2, he found the development of myelin-making cells improved. “The insights Dr. Ransohoff’s discoveries have provided could ultimately pave the way for the development of a new class of MS drugs,” said Benjamin M. Segal, M.D., a nominator of Dr. Ransohoff for the Dystel Prize. With a research grant from the Society, Dr. Ransohoff is studying cell types with and without chemokine receptors to clarify how these cells participate in tissue damage and repair. He also is returning the Society’s gesture of trust by mentoring young researchers and teaching them how to talk about their discoveries. “The theoretical and conceptual side of science is invisible unless you can communicate it,” he said. n Marcella Durand is the associate editor of Momentum, the Society’s national magazine.
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CORPORATE SPOTLIGHT
A new partner on the road to end MS The National MS Society, Upper Midwest Chapter welcomes Sanford Health as the newest 2012 corporate partner. Sanford Health has chosen to support the National MS Society Scholarship Program, which allowed scholarship opportunities to expand into North Dakota, South Dakota and Iowa. They’ll also share their good name with Bike MS rides in North Dakota and South Dakota Bike MS: Sanford Health Ride the Wind and Bike MS: Sanford Health Pedal the Plains.
Want to see your name up in muck? We’re looking for companies interested in getting dirty. Sponsoring an event is a great way to give back to the community while receiving benefits that will expose your brand to the new market of adventure racers. If you’d like to learn more about partnering with MuckRuckus MS™ Twin Cities sponsored by Subaru — or any other National MS Society event — contact Lindsay at 612-335-7976, 800-582-5296 (option 2) or lindsay.hansen@nmss.org.
Nonprofit US Postage
PAID
Twin Cities, MN Permit No. 1759
200 12th Ave. S. Minneapolis, MN 55415-1255
Calendar
Run to stop MS
July 28–29 Bike MS: Sanford Health Ride the Wind, North Dakota Aug. 4–5
Bike MS: Sanford Health Pedal the Plains, South Dakota
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MuckRuckus MS™ Twin Cities sponsored by Subaru, Minnesota
Aug. 15 On the Move Luncheon, Minnesota Oct. 7 Run to Stop MS, Minnesota (Twin Cities Marathon) Oct. 21 Run to Stop MS, Iowa (Des Moines Marathon) Check out a list of upcoming community fundraising events at tinyurl.com/MS-CommunityEvents.
Run with passion. Run with heart. Run 26.2 miles closer to a cure.