MSConnection spring 2012

UPPER MIDWEST CHAPTER

MOVING TOWARD A WORLD FREE OF MS | SPRING 2012

The Blosberg family bikes for a reason In June 1998, Dean and Andrea Blosberg rode the Bike MS: C.H. Robinson Worldwide MS 150 Ride for a friend’s mother in law. They didn’t know much about multiple sclerosis, but their kids were young and it offered a weekend away.

Nine weeks after the ride, Dean’s speech suddenly slurred one weekend. When Monday morning arrived, and the left side of Dean’s face went numb, they went straight to the emergency room. The doctor said Dean had two lesions on his brain indicative of MS. “We had two young girls at the time; we were freaked out. We went to the car, bawled our eyes out and then drove straight to the National MS Society,” said Dean.

The family quickly made some big decisions.

Now they knew why Dean didn’t like spending time outside in the summer. They love to camp, so they bought a hard-sided trailer with air conditioning so they could continue to enjoy

family adventures. The Blosbergs also adopted a son that fall and for the next MS 150, put together a team of 30 people.

“The more energy and time we spent getting people to join us, the easier it was for us to deal with the diagnosis,” said Andrea. Early on, their kids volunteered at Society events, including their “family event,” the MS 150, whether it was cheering people on, serving water or emptying refrigerator trucks! continued on page 5

INSIDE THIS ISSUE

News Page 4

Events Page 7

Living Well with MS Page 8

Research Page 12

612-335-7900 / 800-582-5296

Can you help us?

Publication of the National Multiple Sclerosis Society

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.hansen@nmss.org. To see the full in-kind list, visit MSsociety.org and click “Donate.”

Upper Midwest Chapter

Board Chair • Carol M. Houghtby

Office and warehouse supplies

Items for people with MS

n Power pallet jack

n Phone cards

Email • editor@MSsociety.org

n MP-3 player

n Metro Mobility

The National Multiple Sclerosis Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The National Multiple Sclerosis Society assumes no liability for the use of contents of any product or service mentioned.

n Paper bags (gift,

Chapter President • Holly Anderson Newsletter Editor • Anna Kucera

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 all questions and information be discussed with a personal physician.

goodie bags)

n Tissue paper n Jump drives (portable

storage device)

n 18-gallon storage

tickets

n Gift cards for food

and daily living items (Cub, Target, Hy-Vee)

n Electronic readers

(Kindle, Nook)

bins

n 1,200 lanyards

and clear nametag holders

The National Multiple Sclerosis Society mobilizes people and resources to drive research for a cure and to address the challenges of everyone affected by MS. © 2012 National Multiple Sclerosis Society, Upper Midwest Chapter

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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.

LETTER FROM THE BOARD

MS kills connection > < Connection kills MS Over the coming year, you’ll hear a lot about connections. And that’s because this one simple word means a whole lot to the MS movement.

MS destroys connections inside us. It disconnects the mind from the body, and sometimes, people from each other. These destroyed connections literally stop people from moving. These destroyed connections challenge people — physically, mentally and emotionally. They make it harder to do the things we love to do and get to the places we want to go.

But what if we could defy this disease with the very thing it seeks to destroy: connections. And what if, by connecting our knowledge, our hope and our experiences, we could gain a new understanding of how to move forward?

Maybe, by connecting enough small victories, we could win some really big ones.

When you get down to it, it’s pretty simple. MS kills connections. But it’s connections that will kill MS. These connections happen so often, we often don’t realize how meaningful they are. When someone tells another person with MS about a strategy for dealing with a symptom — whether it’s on Facebook, at work or at an MS group meeting — that connection just might help one person live better with this disease.

When a National MS Society volunteer tells a friend how much fun he has serving lunch at Walk MS every year, he’s just engaged one more person in our movement.

Connecting with our legislators can lead to positive change for others affected by MS in your community, your state and even your country.

MS KILLS CONNECTION

><

Carol Houghtby Board Chair

CONNECTION KILLS MS

Just remember, every meaningful connection — no matter how small — helps us all move closer to a world free of MS. And the more connections we make, the faster we’re going to get there.

Visit MSconnection.org today, and share how you connect to defy MS.

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NEWS BRIEFS

Whatâ&#x20AC;&#x2122;s on MSConnection Online right now?

When you see this

icon, it means thereâ&#x20AC;&#x2122;s expanded coverage online. Follow the instructions at the end of the article to find the extra information, or just browse the news section of our website.

New and improved Midwest Region Lending Library The National MS Society provides free access to accurate, current and comprehensive information to people with MS, those who care for them and health care professionals through the Lending Library program. As of this spring, the chapters of the Midwest Region of the Society have combined libraries to one location in St. Louis, Mo. By joining our individual chapter libraries into one larger library, we now have a larger selection and multiple copies of materials.

All items are mailed based on availability and up to two items may be checked out at a time. Each shipment comes with a postage-paid return envelope so materials can be returned at no cost.

Check out our online Lending Library at tinyurl.com/MidwestLendingLibrary.

New MS program to be offered at Benedictine Health Center in Duluth The National MS Society, Upper Midwest Chapter has teamed up with Benedictine Health Center in Duluth, Minn., to offer a brand new program for people living with MS. Scheduled for Saturdays, from 9 a.m. to 3 p.m., starting May 19, the new program is an opportunity for interaction, social activities, education seminars, exercise and fun.

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Benedictine Health Center will host an open house Saturday, May 5, from 10 a.m. to 1 p.m., for interested participants and their families. A grand opening for the general public will follow Saturday, June 2, for community members, county staff and care coordinators from local hospitals.

For more information, contact Jarod Champeaux with Benedictine Health Center at 218-733-2254.

NEWS BRIEFS

continued from page 1 Asked about his life with MS, Dean said, “Yeah, I’ve got it. Yeah, it’s a pain in the butt. Am I letting it run my life? No.” But the Blosberg family’s life with MS has changed dramatically in the past year.

In September 2011, their youngest daughter, Emily, age 15, felt like she was wearing a glove, a feeling that traveled up her arm and into her face. The feeling went away, but two weeks later on a camping trip, Emily woke up and couldn’t get out of bed. She had nystagmus — involuntary eye movements — and was too dizzy to move. One benefit of her next hospital visit was that she was forced to get the braces off her teeth so doctors could get a clean MRI. It wasn’t until a few more hospitalizations later that another MRI was performed. When the family brought the image disc home and popped it into the computer, Emily immediately pointed to the screen and said, “There’s a new lesion.” “She knew how to read a scan; she’s seen all of her dad’s,” said Andrea.

“If you ask researchers, MS is not a family disease. The fact that she was diagnosed, it

could happen to anybody. And in fact, it can happen to anybody. It’s non-discriminating,” said Andrea.

Emily said the most difficult thing to deal with is the fatigue. She attends school as much as her symptoms will allow. “That’s the hardest part of this disease — you can’t always see it,” said Dean. “People see a broken arm because you have a cast on. People don’t understand fatigue, and it’s difficult to explain.”

The Blosberg family hopes you will make a move this year and Bike MS. When your friends ask, “Why do you ride?” Emily hopes your answer will be: “Because Emily and Dean need to get better.”

Get connected at MSconnection.org Join MSConnection, a new online community that’s all about making meaningful connections when, where and how you want. Learn about topics that are most important to you, connect

with other people affected by MS, and have expert MS information and opinions right at your fingertips at MSconnection.org.

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volunteers

Volunteer spotlight Dennis Hanold Dennis Hanold is a dedicated National MS Society volunteer in addition to being a 15-year Bike MS veteran.

He not only participates as a rider, he volunteers prior to and after the ride by loading and unloading trucks, marking routes and helping with product pick-ups. He’s also a member of the Bike MS Promo Team and recruits new riders throughout the year. You may have even seen him volunteering at Walk MS or another one of our special events, too!

Hanold always has a smile on his face and is willing to help whenever needed. He doesn’t expect anything in return for all of his hard work, and he can always be counted on to do a truly great job.

If you want to see what moving toward a world free of MS looks like, look at Dennis Hanold.

His wife had MS, and his daughter wanted to do something in her honor after graduating from college. Hanold suggested she bike for MS with him, and she did. Now they’re moving forward, together.

Read more and meet other Everyday Heroes at tinyurl.com/EverydayHeroes.

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Upcoming volunteer opportunities Walk MS — May 6, May 12, May 19 Assist with the one-day walk in your area.

Walk MS is held in 34 sites throughout the Upper Midwest Chapter. Visit myMSwalk.org to find a walk near you.

Bike MS: SAM’S CLUB Twin Cities Ride May 12 Help us out with our one-day bike ride that begins and ends in White Bear Lake, Minn.

Riders choose a 22- or 52-mile route, mostly on the Gateway Trail.

Majestic Shores Resort — May 12–17 There are plenty of volunteer opportunities during this weeklong camp for adults living with MS at Camp Courage in Maple Lake, Minn.

Bike MS: C.H. Robinson Worldwide MS 150 Ride — June 8–10 The MS 150 is a two-day, 150-mile bike ride from Duluth, Minn., to the Twin Cities with an overnight in Hinckley. Last year, we needed more than 1,300 volunteers!

Youth Camp — June 18–23 We need camp counselors and other volunteers for this weeklong camp for kids who have a parent or who live in a household with a person with MS. Youth Camp will take place at Camp Icaghowan in Amery, Wis. Bike MS: Cruise the Cornfields June 23–24 Give us a hand in the Ames, Iowa, area for this two-day ride. We need help with set up and tear down, serving food and water to cyclists and more!

events

Don’t just ride, Bike MS.

Upper Midwest Bike MS 2012 series Bike MS: SAM’S CLUB Twin Cities Ride May 12 One day. One ride. Make your mark against MS. White Bear Lake, Minnesota

Love to bike? Hit the road with us! The Upper Midwest Chapter coordinates six bike tours for riders of all levels. Each tour offers stocked rest stops, bicycle mechanics, rider assistance along the route, a T-shirt and a finish line meal. All riders must be at least 12 years old and accompanied by an adult at least 21 years old or older. And remember, riding with a friend is twice the fun! Sign up to ride at myMSbike.org.

Want to help but don’t want to pedal? The success of Bike MS is directly related to our invaluable volunteers, and we welcome volunteers with a wide range of talents and skills. There is only one requirement: A desire to Join the Movement® to end MS. Do you have a specific question?

Contact us at 800-582-5296 or specialevents@MSsociety.org.

Bike MS: C.H. Robinson Worldwide MS 150 Ride June 8-10 An unforgettable ride. An unbeatable destination. A world free of MS. Duluth to the Twin Cities, Minnesota Bike MS: Cruise the Cornfields June 23-24 Iowa’s premier training ride.

Tour through central Iowa Bike MS: TRAM Ride July 22-27 The ultimate road trip.

Central Lakes region, Minnesota Bike MS: Sanford Health Ride the Wind July 28-29 Journey toward an MS-free world.

Casselton to Valley City and back, North Dakota Bike MS: Sanford Health Pedal the Plains Aug. 4-5 An unforgettable ride to end MS forever.

Dell Rapids to Sioux Falls and back, South Dakota

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LIVING well WITH MS

The dirt on adaptive gardening Gardening is one of the most popular hobbies in the U.S., one that can benefit people both mentally and physically, as well as provide fresh and healthy food.

“Gardening gives me control over something in a situation where I don’t always have control,” said Laurie Reiser, diagnosed with MS in 2003. “No matter where you live, or who you are, you can garden.”

Reiser is a Colorado Master Gardener who teaches adaptive gardening in the western part of the state through the local extension office of Colorado State University. “Adaptive gardening is simply about creating your own space,” she emphasized. “There are lots of reasons to adapt.

You can put a garden at your height — on a patio, balcony, railing, steps, cinder blocks, window ledge or tabletop you can roll up to.”

Reiser points out people need little more than a patch of ground to get started — and that patch of ground can even be in a container. Nowadays,

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there are few limits to what can be grown in pots. “Breeders have come up with plants that are compact — and containers need less weeding,” Reiser points out.

A garden open to all Enabling Gardens in Angleton, Texas, south of Houston, focuses on containers and raised beds, according to Cynthia Leonard, one of two dozen active volunteers. “We welcome groups and individuals, anyone who wants to learn how to do accessible gardening,” she said.

Participants learn how to use rain barrels and raised beds, and to garden most suitably for their climate. The garden has 18 planter boxes of different sizes, some of which “have a horizontal board across the top, where people can sit and work on the bed.”

It also features an A-frame trellis called a “cattle panel” on which vines, squash and cucumbers

LIVING well WITH MS

“Adaptive gardening is simply about creating your own space,” — Laurie Reiser, Colorado Master Gardener grow. “Someone who uses a wheelchair can roll under it and reach right up and pick fruits and vegetables,” said Leonard, who was diagnosed with MS in 1997.

Leonard’s been gardening for seven or eight years, starting with flowers in pots, then moving on to tomatoes. She and her husband picked beets and mustard greens in January, and they had fresh tomatoes for Christmas dinner. “It sure is nice to be able to step outside and get good, fresh vegetables. I know how they’ve been grown and what’s been put on the soil. Gardening gives me a sense of peace and well-being.”

Get prepared Gardening is a “hot” activity in more ways than one. To beat the sun, do outdoor work early or late in the day. Set up a shady rest area with a stool or folding chair on a deck, or under a tree, umbrella or arbor. Wear a hat, gloves and

a cooling vest, or carry a spray bottle filled with cool water. (Call 800-344-4867 for information about cooling resources or visit msassociation.org/programs/ cooling.) Set a timer to remind you when to take a break.

Ergonomic gardening tools, such as add-on handles for trowels or extendable hoes, can help make gardening tasks easier. Go to abledata.com and search for “garden tools” to get an idea of what’s available.

Reiser suggests enlisting a buddy, such as a friend or volunteer from a Scout troop or 4-H club, to help with tasks like hauling bags of potting soil.

Local community gardens, botanical gardens or garden clubs may also offer communal space and resources. Search online for barrier-free, adaptive or accessible gardening or ask your public library for books on the topic to get an idea of what’s possible. And then in a few months, enjoy the fruits — literally — of your labors!

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ADVOCACY

MS activists visit Capitol Hill

More than 300 MS activists from across the country visited Washington, D.C., for the National MS Society’s Public Policy Conference March 5-7. Among this group were six volunteers from the Upper Midwest Chapter, who live with multiple sclerosis, including several who had minimal experience in advocacy before their trip to the conference.

“Being an MS activist is much more than being politically savvy,” said Sheri Paulson of Galesburg, N.D. “What really matters is your ability to connect your story or the story of your family to the issues you’re advocating for.”

The volunteers did just that as they asked members of Congress for increased MS research funding, support of the Lifespan Respite Care Act, which provides resources for family caregivers, as well as joining the MS Caucus and signing onto the MS Awareness Week proclamation.

A great deal of preparation takes place before meeting with elected officials. “We spent two busy days learning about important issues, the process of government and how to tell our own MS story. On the final day, we dressed in orange and headed to Capitol Hill,” said DeeAnne Hansen of Moorhead, Minn., who has lived with MS since 1991. “Meeting with Senator Al Franken was the highlight of my trip,” she said.

Few of these volunteers identified with being an “MS activist” before attending the conference, but they were able to urge many of their elected officials to support issues that affect people living with MS. Plus, the connections they made have the power to make even more change.

Are you interested in sharing your story and being an MS activist? Contact Jenna at 612-335-7981 or jenna.washnieski@nmss.org to learn how you can get involved.

“What really matters is your ability to connect your story or the story of your family to the issues you’re advocating for.”

— Sheri Paulson, MS activist 10

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Giving

Golden Circle members want to end MS for good Golden Circle is a place for people who’ve made an extraordinary commitment to end multiple sclerosis forever and includes donors who personally contribute annual, non-event gifts

of $1,000 or more. Golden Circle members have the chance to attend Society salon events, often held in conjunction with Upper Midwest Chapter research symposiums.

Contact Shannon at 612-335-7928 or shannon.wolkerstorfer@MSsociety.org for more information.

research

Survey says walking issues important to address Seventy percent of people with MS who have difficulty walking see that as the most challenging aspect of their disease, according to a recent survey sponsored by the National MS Society and Acorda Therapeutics, maker of AMPYRA®, a drug intended to improve walking.

Survey respondents reported that problems with mobility restrict their daily activities and affect their emotional and financial wellbeing. Some 60 percent of adults with MS who experience difficulty walking have fallen; for a third of them, a fall resulted in an injury.

And, while 65 percent reported walking difficulties or trouble with balance, 40 percent “rarely or never” discussed the issues with their doctor.

“Clearly we need to encourage and empower people with MS to discuss walking impairment with their doctor, including newly diagnosed patients who may be experiencing only mild problems with walking or balance difficulties,” said Nicholas LaRocca, Ph.D., vice president for health care delivery and policy research at the Society.

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research

Results in for potential MS therapies n In a two-year Phase III trial, the oral multiple

sclerosis therapy BG-12 significantly reduced — by up to 51 percent — the average number of annual MS relapses. More than 1,400 people with relapsing-remitting MS participated in the study. BG-12 is thought to inhibit the immune cells and molecules that are involved in MS attacks on the brain and spinal cord. This study should help to define further the safety and promise of BG-12 as a potential therapy for relapsing MS.

n The experimental intravenous MS therapy

alemtuzumab significantly reduced relapse rates and the worsening of disability in a two-year Phase III study that compared alemtuzumab to Rebif. The study, called CAREMS II, involved 840 people with relapsing-remitting MS. The FDA has fast-

tracked alemtuzumab, which should speed up future review. n A study of 324 patients comparing the

MS oral therapy teriflunomide with Rebif found no significant difference in the numbers of participants in each group who experienced events defined as treatment failure. Teriflunomide is thought to prevent damage to the nervous system by immune cells. A previous phase III trial was more successful and three others are ongoing. The FDA is reviewing an application for marketing approval of teriflunomide.

n To stay current on MS therapies in the pipeline

for FDA approval, sign up for MS eNews at nationalMSsociety.org/signup.

Clinical trials: Learn the basics Clinical trials help to determine if a drug is safe and effective for people with multiple sclerosis. People with MS who are willing to volunteer in these studies make it possible for all of us to look forward to new and better therapies.

The process is complicated. Many factors are involved in making sure a study is conducted properly and the results are valid. The U.S. Food and Drug Administration requires therapies to undergo three phases of clinical trials before they can be approved to treat people with MS. 12

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n Phase I: The first step is to determine safety.

In a small number of healthy volunteers or people with MS, the investigators determine how the human body reacts to the therapy.

n Phase II: If the therapy proves to be safe,

studies begin to determine the effectiveness of the drug in people with MS. These studies may last several months or several years, and involve larger numbers of people. The study is “controlled” — that is, the drug is compared with the standard treatment or an inactive placebo.

n Phase III: If an MS drug shows effectiveness,

an even larger study is conducted in hundreds of people to gain a better understanding of

research

the drug’s effectiveness and possible side effects. These multi-center studies can span several years and several countries. n Phase IV: Following FDA approval, post-

marketing studies might be conducted to assess long-term safety and effectiveness.

People with MS can take an active role in freeing the world of MS by participating in drug studies. Visit tinyurl.com/MSclinicaltrials to find out about local studies and what you need to know before you participate, including who can participate, what costs are covered, the definition of informed consent, how the study is controlled and more.

Below is a short list of commonly used terms when talking about clinical trials.

For more definitions, visit tinyurl.Com/msclinicalterms.

Arm Any of the treatment groups in a randomized trial. Most randomized trials have two “arms,” but some have three “arms” or more.

Blind A randomized trial is “blind” if the participant is not told which arm of the trial they belong to. A clinical trial is “blind” if participants are unaware whether they are in the experimental or control arm of the study.

Control group The standard by which experimental observations are evaluated. In many clinical trials, one group of patients will be given an experimental drug or treatment, while the control group is given either a standard treatment for the illness or a placebo.

Double-blind study A clinical trial design in which neither the participating individuals nor the study staff knows which participants are receiving the experimental drug and which are receiving a placebo (or another therapy). Double-blind trials are thought to produce objective results,

because the expectations of the doctor and the participant do not affect the outcome.

Efficacy The maximum ability of a drug or treatment to produce a result regardless of dosage. A drug passes efficacy trials if it is effective at the dose tested and against the illness for which it is prescribed. In the procedure mandated by the fda, phase ii clinical trials gauge efficacy and phase iii trials confirm it.

Placebo A placebo is an inactive pill, liquid or powder that has no treatment value. In clinical trials, experimental treatments often are compared with placebos to assess the treatment’s effectiveness.

Statistical significance The probability that an event or difference occurred by chance alone. In clinical trials, the level of statistical significance depends on the number of participants studied and the observations made, as well as the magnitude of differences observed.

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CORPORATE SPOTLIGHT

National Bike MS partners to visit Twin Cities

Raleigh was recently named the Official Bicycle Brand of Bike MS Rides. In partnership with Erik’s Bike Shop, they’ll support all six Upper

Midwest Chapter rides. In addition to bike shop promotion and social media marketing, they’ll brand the bike corral at each overnight. Bike MS riders will receive everything from training ride schedules to nutrition tips to ever-so-practical seat covers.

NOW & Novartis Phil Keoghan of “Amazing Race” is sending his women’s professional cycling team to five Bike MS rides across the country starting with Bike MS: SAM’S CLUB Twin Cities Ride Saturday,

May 12, in White Bear Lake, Minn. The professional cyclists will be available to ride with that day, and Novartis will host a “Meet ‘n Greet” at the finish line.

Pure Protein — Eat good, look great Pure Protein has created a variety of quality protein products to incorporate into your everyday lifestyle. As a

national corporate partner, they support Walk MS and Bike MS. The Pure Protein team will ride on Bike MS: C.H. Robinson Worldwide MS 150 Ride and hand out bars. Or, pick up a Pure Protein bag at Walk MS: Sioux Falls!

Recent activities presented by corporate partners The chapter’s corporate partner, EMD Serono Pfizer, presented the MS Annual Conference and the On the Move Little Black Dress luncheon in Fargo, N.D. Biogen Idec was a co-presenter of A Taste of Generosity wine auction in Des Moines. Look for them at several Walk MS events, too!

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CALENDAR

May 6

Walk MS: Christopher & Banks Walk presented by Walser; Minnesota

May 12

Walk MS: North Dakota

May 12

Bike MS: SAM’S CLUB Twin Cities Ride; White Bear Lake, MN

May 13–17

Majestic Shores Resort, Camp Courage; Maple Lake, MN

May 19

Walk MS: Iowa

May 19

Walk MS: South Dakota

June 8–10

Bike MS: C.H. Robinson Worldwide MS 150 Ride; Duluth to the Twin Cities, MN

June 18–23

Youth Camp, Camp Icaghowan; Amery, WI

Check out a list of upcoming community fundraising events at tinyurl.com/MS-CommunityEvents Telephone consultations *Free and by appointment only.

Family attorney consultations Rod Jensen, attorney at law Call chapter to schedule an appointment.

Employment consultations Jennifer Johnson, tips on interviewing, resumes and more Call chapter to schedule an appointment.

Employment discrimination/private disability consultations Denise Tataryn, attorney at law May 3, June 7, July 5 Financial planning consultations John Robinson, C.F.P.®, financial advisor May 14, June 11, July 9

For information or to register Programs Contact registration line: 612-335-7900 or 800-582-5296 Telephone consultations Contact Sarah, Jill, Heather or Laurie: 612-335-7900 or 800-582-5296 Fundraising events Contact Ann: 612-335-7975 or 800-582-5296

Newly diagnosed consultations Call 800-582-5296 (option 2) to schedule a face-to-face meeting or phone consultation with an Upper Midwest Chapter MS Navigator®. Some evening and Saturday times are available.

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Nonprofit US Postage

PAID

Twin Cities, MN Permit No. 1759

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

MuckRuckusMS.org/TwinCities

AUG. 11, 2012 TROLLHAUGEN DRESSER, WI