MS Connection, Summer 2014 by National MS Society, Upper Midwest Chapter

SUMMER 2014 UPPER MIDWEST CHAPTER

MS Connection Newsletter

MuckFest® MS announces new location — Somerset, Wis.

INSIDE 04 THIS ISSUE

MuckFest® MS 2014 details

MS and HIPAA violations

Neuroportection and MS

Upcoming programs

2 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 Jen at 612-335-7925, 800-582-5296 (option 2) or jennifer.baumgartner@nmss.org. To see the full in-kind list, visit MSsociety.org and click “Donate,” then select “Other ways to give.” n

Pitney Bowes D380 Inserter

Power pallet jack

Bike rack

Digital photo printer

Gift cards (restaurants, convenience stores, etc.)

National Multiple Sclerosis Society Upper Midwest Chapter 200 12th Ave. S. Minneapolis, MN 55415 800-582-5296 Board chair: Larry Schmid Chapter president: Holly Anderson Editor: Maggie Flanagan Design: Sue Schweitzer © 2014 National Multiple Sclerosis Society, Upper Midwest Chapter

Concert and event tickets

Jump drives (portable storage devices)

Gift basket items for silent auctions

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 BOARD CHAIR

Building community, strengthening the movement 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 Find us: @UpperMidwest MS

It’s been a busy spring for Society staff and volunteers. The fundraising event season is in full swing — 28 Walk MS events were held in May and four of six Bike MS events have taken place. We have a handful of events left, including MuckFest® MS, which you can read more about inside. I know many of you have participated in one or more events for several years, and I extend sincere thanks for your contribution to our mission to end MS. Your participation helps people with MS live their best lives, plus it fosters connections with staff, volunteers and other event participants, creating a stronger community and a stronger movement. Earlier this year, I had the opportunity to attend MS Annual Conferences in all four states served by the Upper Midwest Chapter. I was quite impressed by the work and dedication of volunteers, top fundraisers, staff and board members. Due to their tremendous efforts, we’re more than halfway to our goal of raising $250 million for MS research. If you haven’t signed up to participate or volunteer in a summer fundraising event, please consider joining the thousands of others who are already working toward the one important goal we all share — a world free of MS. n

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NEWS

MuckFest MS announces new location ®

MuckFest® MS Twin Cities, the Midwest’s best mud and obstacle fun-run, will be hosted Saturday, Aug. 2, at a new location — Somerset Amphitheater Music and Event Center in Somerset, Wis. Made with mud, sweat and cheers, the 5k course features a gauntlet of muck-filled mazes, pits and craters with more than 20 gigantic steel obstacles. After a quick wipe down, participants can enjoy beer, great food and music. There’s no required fundraising minimum at MuckFest MS, however 100 percent of the money raised benefits the National MS Society — proving that you can have loads of dirty fun and feel good about it in the morning.

MuckFest MS attracts the best mix of people, everyone from seasoned endurance athletes to brand new athletes who are doing their very first mud and obstacle 5K ever. All that’s required for MuckFest MS is a desire to laugh and to have fun with friends, old and new.

Team up Hands down, the best way to experience the laugh riot of MuckFest MS is with your very own team. Plus, there are special group packages for four or more when you register! Recruit at least one other person, choose a clever and delightfully dirty team name and start thinking outfits.

Spectators welcome There’s no admission fee for spectators, so your friends and family are welcome! Trust us, you’ll want witnesses.

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News

North Dakota Walk MS to take place Sept. 6

2013 Report of Support available online

North Dakota will host four Walk MS events Saturday, Sept. 6, in Bismarck, Fargo, Grand Forks and Minot. Hundreds of people in these communities will rally to support the people they love who are affected by MS.

The Upper Midwest Chapter’s Report of Support recaps the chapter’s financial position and activities for fiscal year 2013, and recognizes top fundraisers and volunteers who help advance our mission of creating a world free of MS.

To learn more or sign up for a North Dakota walk, visit myMSwalk.org.

Visit MSsociety.org, go to “About this Chapter” and select “Financials” to view the 2013 Report of Support. n

Iowa, South Dakota and Minnesota hosted Walk MS events in May, raising more than $1.6 million to help support families affected by MS. n

Clinical trials Searching for better treatments, including better management of symptoms and complementary or alternative approaches, for all forms of MS is a high priority for the National MS Society. Well-designed clinical trials and the people who participate in them are crucial to determining the safety and effectiveness of therapies for MS.

It’s because of people who participate in clinical trials that we have 10 MS treatments today. The Society is currently supporting approximately 30 studies of potential treatments or rehabilitation interventions. People living with MS are needed to complete clinical trials and help increase treatment and symptom management options. If you’re interested in participating in a Society sponsored clinical trial or would like to sign up for MS trial alerts, visit nationalMSsociety.org/ clinicaltrials. n

6 EVENTS

On the Move Luncheon supports secondary education

The 15th annual On the Move Luncheon will be hosted Thursday, Aug. 14, at The Depot in Minneapolis to support the MS Scholarship Program and recognize the importance of secondary education. Gifts made at the event help students realize their dreams of going to college despite the financial burden multiple sclerosis might impose on their families. The luncheon includes delicious food, exciting live and silent auctions — including items such as gift baskets, spa packages, Minnesota Twins suite tickets, vacation destinations and more — and inspirational speakers.

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This year’s keynote speaker is Dr. Gaël Yonnet, a Covenant Clinic physiatrist who lives in Waterloo, Iowa. Yonnet, a native of Bordeaux, France, came to the U.S. 18 years ago to study at the University of Utah School of Medicine. He was in his senior year of medical school when he fell and broke his neck during a snowboarding competition. He spent two months in the hospital where he learned how to adapt to his new life in a wheelchair. Yonnet’s snowboarding accident was the beginning of his path toward specializing in physical medicine and rehabilitation for people with spinal cord injuries, and eventually working with people with MS. He said he was originally drawn to Iowa because the state’s MS patients are considered to be under served. Yonnet hopes to translate his passion for helping those with MS into a center that would help patients better manage or even prevent symptoms. The MS Scholarship Program awarded $100,000 to 83 students for the 2014-2015 school year. Join us at the this year’s On the Move Luncheon and help stop MS from standing in the way of an education. Special thanks to Prime Therapeutics for sponsor support. n

Purchase your seat To learn more about the On the Move Luncheon and purchase your seat, visit MSsociety.org and select “Join an Event.”

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Events

Take a walk you’ll never forget

than just a walk. It’s laughter, encouragement and fun. It’s a gift — to yourself and the person you love who lives with MS.

“Challenge Walk is my support group! Meeting new friends every year motivates me to come back … to make a difference in their lives, not only the life of my loved one with MS. I can endure walking 30 miles over a few days if my husband, who has MS, can live with the disease every day.” — Kathy Ulmer, tenth-year walker

This fall, challenge yourself to do something you’ve never done before. Challenge your mental and physical strength by walking 50k (nearly 30 miles) in just two days. Challenge yourself to do more for people living with multiple sclerosis. If you believe in ending MS forever, challenge yourself and take action. Sign up for Challenge Walk MS, a two-day, 50k walk through the Twin Cities. But it’s more

Nearly 200 people will gather in St. Louis Park, Sept. 20, and walk through the very best of the Twin Cities. Many will adorn themselves in pearls and fedoras, flapper dresses and fake tommy guns in honor of this year’s theme, “The Roaring 20s.” Rest stops stocked with water and snacks are provided every two miles. Walkers will overnight in St. Louis Park and complete a powerful victory march across the Stone Arch Bridge in Minneapolis. To learn more about Challenge Walk MS, visit 2daychallenge.org. If you have questions, please call us at 855-372-1331. n

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ADVOCACY

HIPAA Awareness, Know Your Rights By Eliz abeth C. Carlson It’s not uncommon to be on autopilot when visiting a doctor, as your priority is typically the appointment itself — arriving on time, dealing with medical problems or getting questions answered — not necessarily the check-in procedures immediately after walking through the door. Navigating the health care system, including physician’s visits, can feel like traveling to a foreign country. There are so many questions and preparation is imperative: n

What do I need to know about this trip?

Do I know the language?

Is there a guide in case I need assistance?

Where am I ultimately going?

Diagnosed with relapsing-remitting MS in 2002, the ensuing 11 years of medical treatment made me feel like a savvy veteran in managing my illness and navigating the health care system. However, as those of you with MS know, the unexpected can lurk just around the corner.

Last fall, I experienced a health issue that required emergency care and surgery from a specialist. The surgical procedure appeared to go well, but when unexpected complications arose, I did not receive proper aftercare from the clinic, despite repeated attempts for medical assistance. Little did I know, this would be the beginning of my problems with the clinic, its post-surgery care and its culture. I was shocked when I discovered the confidential fax I had sent my physician (detailing issues post-surgery) was discussed at a social gathering for a retired physician within the clinic. Additionally, the retired physician shared the details with family members at a subsequent birthday party!

Navigating the health care system, including physician’s visits, can feel like traveling to a foreign country. I was stunned and outraged that my personal medical information was shared without my consent. Not just once, but twice. I immediately knew I needed to report this situation, as what had occurred was a federal HIPAA (Health Insurance Portability and Accountability Act) privacy breach. HIPAA, established in 1996, requires that medical providers have signed disclosure from patients before giving out any information on provided health care to anyone, including parents.

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With my 11-year history of living with a chronic illness, I had signed my fair share of HIPAA forms and could remember the basics. Simply put, your privacy is just that: it’s private. Unless you have given explicit permission with signed documentation to share the information, or if sharing your information meets the guidelines of HIPAA rules, it cannot be made public. I spent time researching HIPAA laws and regulations, compiling notes and documenting my situation. I met with responsible parties at the clinic to tell my story and get answers to how the breach occurred. The clinic admitted fault and self-reported their violation. Action was taken with the staff member who had involvement and the clinic admitted they needed to change their culture with annual training and other new procedures. Trusting your doctor and having confidence in their abilities is an important part of receiving the best medical care. My best advice is to know your rights, be informed and ask questions. You are the navigator in your health care journey and it’s up to you to take control.

There is a wealth of online resources to inform, educate and assist patients who believe a breach has occurred. To learn more about health care privacy and HIPAA, visit hhs.gov/ocr/privacy. Elizabeth Carlson, diagnosed in June 2002, is an MS Activist who has visited the Minnesota state capitol and national capitol advocating for important MS issues. n

Join your state’s Advocacy Council Are you interested in helping bring about policy change for people living with MS in your state? We’re seeking volunteers to join State Advocacy Councils to be leaders in our public policy initiatives, organize advocacy events and reach out to grassroots activists. Please complete an online survey at tinyurl.com/nu2n5pg or contact James at 612-335-7984 to get involved.

10 VOLUNTEER

Volunteer SPOTLIGHT Donna Johnson Donna Johnson of St. Paul, Minn., spent 23 years with Ramsey County as a supervisor and employment counselor, honing a wide range of communication and administrative skills, including group facilitation. Today, she takes writing classes, does beadwork and sells handmade cards. In addition to volunteering for the Upper Midwest Chapter, Donna lends her many talents volunteering with the Como Zoo and St. Croix Hospice.

Volunteer opportunities The Upper Midwest Chapter is halfway through its fundraising event season and we would love your help in ending the year strong! Please

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Donna’s mother was diagnosed with MS around 1970 and she has an older brother who lives with the disease. Donna was diagnosed with primary progressive MS in 2004, just a few months after her mother passed away. In 2005, Donna started an MS book club with another friend. This was her first time connecting others affected by MS through a common experience. The group continues to meet each month in Maplewood, Minn. In 2009, Donna decided to organize a social support group for artists, writers and crafters with MS. Almost five years later, the group is going strong with about ten regular members. This past October, Donna began to help at the National MS Society office in Minneapolis one morning a week. She researches service providers and updates internal records accordingly. Thank you, Donna! Your contributions of time and talent make the world a better place for people affected by MS. n

visit MSsociety.org for remaining volunteer opportunities, including three Bike MS events, Challenge Walk MS, MuckFest® MS and more. Office volunteers are needed year-round, and we’ll be posting fall internships shortly. Check out the volunteer pages for up-to-date positions at MSsociety.org. n

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GIVING

Focusing on MS research

PERRY ANN JEVELI (LEFT) AND HER MOTHER, BARBARA SCHAUFFLER (RIGHT), STAND ALONGSIDE DR. SABEEN LULU At the time of her MS diagnosis in 1995, Perry Ann Jeveli was a 30-year-old graduate student looking forward to a bright career in business. Shocked by her inability to see clearly or walk unassisted during her initial exacerbation, she sought to understand the impact MS might have on her future. As she learned more about the disease, she became convinced that there must be other people with MS who were living active, healthy lives and benefiting from research advances. “At that time, I knew there must be other sides to this disease. I wanted to understand what was possible,” reflects Jeveli. With her neurologist

11 Stephen Hauser, M.D., at University of California, San Francisco (UCSF), she worked to take advantage of one of the first therapies available for people with MS and formed a Walk MS team, “Pear’s Pack.” To date, Pear’s Pack has raised more than $500,000. As she learned more about the National MS Society-funded research taking place at UCSF, Jeveli resolved to increase her volunteer efforts. In partnership with the Society and UCSF, she created the Jeveli Research Fellowship in 2013 supported by the funds raised by Pear’s Pack, whereby promising young doctors receive special training at UCSF to develop the complex skills involved in the design, implementation and analysis of MS clinical trials with the goal of accelerating much-needed treatments. “With so much promising research taking place, alongside the critical need to attract outstanding MS researchers, it was important for me to further refine the focus of our fundraising. Donors to our Walk MS team appreciate the direct correlation that their donations have with exciting research advances,” Jeveli says. At the Society’s Leadership Conference in November, Jeveli met the first Jeveli Research Fellowship recipient, Dr. Sabeen Lulu, whose work focuses on pediatric MS. Today, Jeveli’s commitment to MS is stronger than ever. Not only does she continue to grow her team’s fundraising to support focused research initiatives, she is also eager to lend her ear and heart to those newly diagnosed, sharing her hope for the future. n

12 RESEARCH

NEUROPROTECTION AND MS IN BOTH GENDERS, SEX HORMONES CAN DIRECTLY AFFECT BRAIN CELLS. After the Society’s webcast, “Promising MS Research to Repair, Protect and Restore the Nervous System” (view the webcast at nationalMSsociety.org/webcasts), we sat down with Dr. Rhonda Voskuhl, MS program director at the University of California, Los Angeles, to discuss the work her lab is doing in the area of neuroprotection. Could you explain how neuroprotective therapies would be different from the therapies we have now? The therapies we have now were designed based on our understanding of the immune attack that occurs in multiple sclerosis, where immune cells attack the brain and spinal cord. They have been successful in that they reduce relapses by half or more, but they don’t halt permanent disability accumulation. Neuroprotective therapies would target cells in the brain and spinal cord, namely neurons, oligodendrocytes and astrocytes (important cells in the brain) to build up their resistance to or protection from an immune attack. The neuroprotective therapies may have minimal

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effect on relapses, but would likely have a great impact on permanent disability accumulation — and they may even cause some reversal or improvement in disability. We’ve studied several mechanisms involved in neurodegeneration (nerve destruction), as well as cells related to that process. We also have focused a lot on sex hormones. Estrogen (in females) and testosterone (in males) can be very neuroprotective and directly affect brain cells. We’ve completed several preclinical studies as well as two clinical trials in sex hormones, and we have two additional ongoing trials, with another trial planned. We’d love to hear more about the research exploring sex hormones in men. Eventually, there may be a common theme between women and men in the sense that testosterone is naturally converted to estrogen in the brain. Therefore, if you treat women with estrogen and men with testosterone, you could end up in the same place — binding to estrogen receptors in brain cells to cause protective effects. Specifically related to testosterone in men, we’ve done extensive preclinical work and have seen much improvement in both walking and cognitive outcomes, which included neuroprotective mechanisms. In a small pilot clinical trial, we gave testosterone to men with MS and found a 67 percent reduction in the whole brain atrophy rate, as well as an improvement in their cognitive testing. In a paper published this year in Neuroimage Clinical,

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our collaborator Dr. Allan Mackenzie-Graham found that the slowing of brain atrophy in this trial was due to both a halting of cerebral cortical gray matter atrophy and also some gray matter gain or restoration during testosterone treatment. We are now hoping to follow that study with a larger study we just submitted to the National Institutes of Health. With up to 25 sites across the U.S., this would be a much larger study of 110 men with MS and will be placebo controlled. We will be looking for improvements in outcomes that are very important for disability and cognition in men with MS. Testosterone may have several other positive side-effects in men with MS. It’s known to improve muscle mass and muscle strength, improve bone density, decrease fatigue, and improve cognition in older men going through andropause. In addition, this trial will provide valuable information about the safety of testosterone supplementation for men with MS. Are you seeing similar results related to cognition in women with estrogen supplementation? We have an ongoing trial of estriol, the safest of the estrogens, which is present during pregnancy. We are still enrolling participants in this trial with sites at University of California, Los Angeles, Colorado, New Mexico and University of Pennsylvania. This study is very similar to the study of testosterone in men — however it will have cognition as the primary outcome.

We also have another study exploring estrogen’s potential effect on relapses in women with MS. Preclinical data has shown that, in addition to being neuroprotective, estriol is also anti-inflammatory. On the other hand, testosterone appears to be only modestly anti-inflammatory, but appears to be more dramatically neuroprotective. What excites you most about this area of research? We know pregnancy is good for MS, and that estrogen is high during pregnancy. We also know men don’t get MS as often, and when they do, it’s often later in life when their testosterone has begun to drop. So we’re taking something that we know is clinically significant and relevant to people with MS, and then trying to figure that out. It’s a different approach that starts with people with MS and then asks, “What phenomena are going on here that we don’t understand? Can we figure it out? And can we capitalize on it?” It will involve many molecules and many mechanisms because it’s a dramatic clinical effect that we’re trying to understand. And I think that’s why treatments using this approach will work — they’ll work through many mechanisms rather than one. n Originally published on MSconnection.org/blog.

14 Corporate Spotlight

Thank you Bike MS sponsors The Upper Midwest Chapter welcomes four corporate partners to Bike MS. With both financial and in-kind sponsor support, we’re able to provide a better event experience for riders and continue the important work of supporting people who live with MS. This year, Toro — a global leader in turf and landscape maintenance — sponsored the 100-mile celebration at Bike MS: C.H. Robinson MS 150 Ride as part of their 100th anniversary.

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Hamline University, located in St. Paul, Minn., also joined the 2014 MS 150 Ride sponsors by providing breakfast to cyclists Saturday and Sunday morning of the ride. First aid at the MS 150 Ride was made possible by the support of Essentia Health – Miller-Dwan Rehab, the official health partner of the MS 150 event. Essentia Health donated first aid and medical supplies, in addition to health care professionals who volunteered their time to provide services. Special thanks to Microsoft, a new Bike MS: Sanford Health Ride the Wind sponsor. Microsoft is providing financial support for the July 26 event and has a corporate team riding as well. n

Ford Mustang Convertible raffle aims to raise $2 million The National MS Society, coordinated by the Michigan Chapter, is partnering with the Ford Motor Company to raffle off a one-of-a-kind 2015 Mustang GT 50 Years Convertible. Tickets are $20 each and all funds raised through the Ford4MS Mustang raffle will benefit the National MS Society and the NOW research campaign with a goal of raising $2 million! The drawing is Aug. 16 and tickets will sell out! Learn more by visiting ford4ms.com where you can request raffle tickets today.

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Chapter programs

Upcoming programs Programs listed are free unless otherwise noted. For more information or to register for a listed program, visit MSsociety.org or call 800-582-5296 (option 1).

Program feature Volunteer Initiated Programs The Upper Midwest Chapter is excited to announce a volunteer opportunity for people who are passionate about the MS movement and want to create a meaningful experience for people living with the disease. If you’re interested in planning and executing your own MS education or social event, you can participate in a Volunteer Initiated Program (VIP). Volunteers who would like to host their own program receive training, guidance and basic marketing support and tools to boost attendance and measure success. By becoming a VIP leader, you can help build a strong, informed community and move us all closer to a world free of MS. For more information, contact James at 612-335-7984 or james.adkinson@nmss.org. VIPs are made possible by a grant from the Otto Bremer Foundation.

IOWA Everyday Matters: Living Your Best Life with MS Monday, July 21, 6:30 p.m. Knoxville Seventh-Day Adventist Church 1201 S. Attica Road, Knoxville, IA 50138 Thursday, Aug. 7, 6:30 p.m. Davenport Public Library 3000 N. Fairmount St., Davenport, Iowa, 52804 Everyone has their own idea of what it means to live their “best life.” For people with

multiple sclerosis, the idea of that best life can change due to the challenges of having a chronic, unpredictable and lifelong disease. In this program, you’ll learn principles of positive psychology and strategies to enhance personal strengths that can help you live your best life with MS. The program will be facilitated by Corey Maylone, community programs specialist, from the National MS Society.

16 MINNESOTA MS Research Symposium Thursday, July 17, 5:30–7 p.m. Holiday Inn and Suites 11801 Fountains Way N., Maple Grove, MN 55369 Learn about the latest, nationally recognized multiple sclerosis research projects and therapies, and have your questions answered by MS specialist Dr. Gareth Parry from the from the University of Minnesota MS Center. Plus, visit exhibitor tables to learn more about drug therapy options available to people with relapsing forms of MS. Appetizers will be provided. The registration deadline is July 10.

20s/30s Noran event at the Minnesota Zoo Saturday, July 26, 10:30 a.m. – 12:30 p.m. Minnesota Zoo, Green Acres picnic area 13000 Zoo Blvd., Apple Valley, MN 55124 Spend a day at the Minnesota Zoo while picnicking and socializing with people in their 20s and 30s who live with or have a connection to MS. Enjoy good food, make friends and have fun! Zoo admission, parking, food and beverages during the picnic are provided by the Noran Neurological Clinic (admission to the Big Bugs! exhibit is included). Games and face painting will be available during the picnic. Guests can enjoy zoo attractions for the entire day. Friends and family are welcome! Registration is required by July 3. Space is limited — sign up today!

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Education and social program at the Minnesota Landscape Arboretum Saturday, July 26, 8:30–11:30 a.m. Azalea Classroom 3675 Arboretum Drive, Chaska, MN 55318 Join us for a day at the arboretum to meet others who understand an MS diagnosis. The morning program includes a light breakfast, guest speaker Megan Frost, P.T., M.S.C.S. — Director of Physical Therapy and co-owner of STEP Physical Therapy in North Oaks, Minn. — and time to connect. You may grab lunch at the onsite restaurant or bring your own and enjoy a picnic in the many gardens, terraces and patios of the arboretum. Admission to the arboretum and parking is included. Registration is required by July 18. Space is limited so sign up today!

Care partner social on the lake Thursday, Aug. 21, 5–8 p.m. Bayside Grill 687 Excelsior Blvd., Excelsior, MN 55331 Join us for an opportunity to connect with others who understand the experience of caring for someone who has MS in a beautiful, lakeside setting! Guests are responsible for purchasing their own food and beverages. There is no fee for this program. RSVPs are encouraged but not required.

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Family picnic Sunday, Aug. 10, Noon – 3 p.m. Rice Creek Chain of Lakes Park Reserve 7401 Main St., Lino Lakes, MN 55038 Join other families affected by MS for a family picnic in Lino Lakes! Hot dogs and burgers will be provided as well as limited beverages. Guests are encouraged to bring a dish to share and any additional beverages they may want. Enjoy access to the Wargo Nature Center, playground and volleyball nets and other park facilities for the duration of the day. There is no fee to register but there is a $5 charge per car to get in to the park. For specific location details and to RSVP, contact Dawn at 651-216-4937 or dawn_marie72@hotmail.com.

NORTH DAKOTA MS Research Symposium Thursday, July 10, 5:30–7:30 p.m. Holiday Inn 3803 13th Ave. S., Fargo, ND 58103 Learn about the latest, nationally recognized multiple sclerosis research projects and therapies, and have your questions answered by MS specialist Dr. Gareth Parry from the from the University of Minnesota MS Center. Plus, visit exhibitor tables to learn more about drug therapy options available to people with relapsing forms of MS. Appetizers will be provided. The registration deadline is July 2.

17 Making Treatment and Lifestyle Decisions: Managing Benefits and Risks Thursday, Aug. 14, 6 p.m. North Dakota Association for the Disabled 2660 S. Columbia Road., Grand Forks, ND 58201 Wednesday, Sept. 17, 7 p.m. Sanford Health, Seventh & Rosser Clinic 414 N. Seventh St., Bismarck, ND, 58501 In the past 20 years, our understanding of multiple sclerosis has expanded tremendously, and we now have more treatment and symptom-management options than ever before. When considering these options, you should weigh the reliability of various information sources (scientific data, clinical studies, healthcare professionals, media, etc.) and the preferences of family and friends. A number of additional factors can complicate decision making, such as: comfort with risk, tolerance to side effects, treatment methods and more. In this program, we’ll consider these and other issues that can influence treatment decisions and lifestyle choices. For information or to RSVP for the Grand Forks program, contact Lee at 701-787-5167 or ljn0219@gra.midco.net. For information or to RSVP for the Bismarck program, contact Nettie at 701-355-2254 or nalindvig62@yahoo.com.

18 Primary Progressive MS: Perspectives on Moving Forward

MS connection: SUMMER 2014

SOUTH DAKOTA

Thursday, Sept. 11, 6 p.m. North Dakota Association for the Disabled 2660 S. Columbia Road., Grand Forks, ND 58201

Newly diagnosed program

Primary-progressive multiple sclerosis (PPMS) is characterized by a steady decline in function without relapses, and current disease-modifying treatments are largely ineffective in people living with PPMS. In the DVD “Primary-Progressive MS: Perspectives on Moving Forward,” listen to four individuals living with PPMS tell their stories and perspectives.

Attend an educational program for people diagnosed with multiple sclerosis from 2011 to present. MS expert and guest speaker Dr. Elizabeth Hartman, M.D., from the Center for Nerve Orthopedic Spine will provide a general overview of MS and answer your questions. Space is limited! RSVP to Jill at 612-335-7938 or jill.grover@nmss.org by July 11.

For information or to RSVP, contact Lee at 701-787-5167 or ljn0219@gra.midco.net.

Relationship Matters: A Program for Couples Living With MS

Everyday Matters: Living Your Best Life with MS

Saturday, July 19, 9 a.m. – 5 p.m. Chapter office, 1000 N. West Ave., Ste. 215 Sioux Falls, SD 57104

Wednesday, Sept. 17, 7 p.m. Sanford Health, Seventh & Rosser Clinic 414 N. Seventh St., Bismarck, ND 58501 Everyone has their own idea of what it means to live their “best life.” For people with multiple sclerosis, the idea of that best life can change due to the challenges of having a chronic, unpredictable and lifelong disease. In this program, you’ll learn principles of positive psychology and strategies to enhance personal strengths that can help you live your best life with MS. The program will be facilitated by chapter program director Jeff Fisher. For information or to RSVP, contact Nettie at 701-355-2254 or nalindvig62@yahoo.com.

Thursday July 17, 6–8 p.m. Chapter office, 1000 N. West Ave., Ste. 215 Sioux Falls, SD 57104

Having a satisfactory relationship can be hard work even in the best of times. MS can make it even harder. The Relationship Matters program exists to help couples minimize the impact of MS on their lives. In this day-long program, learn how to: n

improve communication and resolve conflicts;

have greater fulfillment in your relationship;

manage MS as a team; and

help your relationship thrive.

When you know how to take charge as a couple, MS doesn’t have to rule your relationship. This

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program is open to all people living with MS and their spouse or partner. The registration deadline is July 11. Lunch and a light snack will be provided.

ANYWHERE, ANYTIME PROGRAMS Anywhere, anytime programs can be accessed online or by telephone. The Society has designed a number of programs that are available at your convenience, putting MS education right at your fingertips, right when you need it.

MS Symptoms Part I: Unique Approaches to Unique Symptoms (Webinar) Tuesday, July 8, 7–8:15 p.m. An informative and accessible program for people with MS and their support partners to see beyond their MS by learning the knowledge and tools to adopt healthy lifestyle behaviors, actively co-manage their MS and live their best lives. There is no cost to register. For more information or to sign up, visit mscando.org. All webinars are recorded and can be accessed for free at mscando.org.

Midwest Teleconference Series Each month, an MS specialist provides up-to-date information on a specific topic in a one-hour teleconference format. To learn more or register, visiting MSsociety.org or call 800-582-5296.

Monday, July 14, 7–8 p.m. (CST) “Emerging Therapies” with Dr. Daniel Wynn, neurologist, Consultants in Neurology Monday, Aug. 11, 7–8 p.m. (CST) “Practical Nutrition for People with MS” with Dr. Bhupendra O. Khatri, neurologist, medical director, Center for Neurological Disorders Monday, Sept. 8, 7–8 p.m. (CST) “Financial Planning for a Future with MS” with David A. Malson, lawyer and partner, Barnes & Thornburg, L.L.P.

MSConnection.org MSConnection.org — an online community that’s all about making meaningful connections when, where and how you want — provides easy access to the best content and resources the MS community can bring you. You’ll learn about the topics that are most important to you, connect with people you want to connect with and have expert MS information right at your fingertips.

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Twin Cities, MN Permit No. 1759

200 12th Ave. S. Minneapolis, MN 55415-1255

Connecting with people can make all the difference MS clubs and groups provide opportunities to create meaningful connections with other people who share experiences similar to your own. Together, you can learn more about MS, build valuable friendships and have fun! More than 100 Upper Midwest Chapter clubs and groups that are just as unique and varied as each personâ&#x20AC;&#x2122;s experience with MS are already meeting on a regular basis. For an updated list of clubs and groups in your area, call 800-582-5296 or visit MSsociety.org.

FREE MATTER FOR THE BLIND OR HANDICAPPED

200 12th Ave. S. Minneapolis, MN 55415-1255