UPPER MIDWEST CHAPTER ANNUAL PROGRAMS AND RESOURCES GUIDE
MS Resource Guide
Whatever your connection to MS may be, use this guide to get the information and support you need.
We know each person’s experience living with multiple sclerosis is unique — unique like their questions, concerns, expectations and hopes. We also know that despite the many differences among people affected by this disease, together we are stronger. When people affected by MS are connected to one another, their communities, resources and information, the MS movement is more powerful. The National MS Society creates opportunities for everyone to make connections that are meaningful to them. We offer more programs and services than any other MS organization in the world, and fund research that is changing the future for millions of people diagnosed with MS. In this guide, you’ll discover the many ways you can learn more about this disease, share experiences and knowledge, and empower yourself to live your best life. When you’re done reading, hold on to this guide and refer back to it as needed. If you don’t see a topic covered, contact us about it. There’s no question too big or too small. Taking action to address whatever challenges you may face living with a chronic illness contributes to a stronger, more powerful MS movement. Each person, each conversation and every connection is an opportunity to contribute. Together, we are stronger. Together, we will change the world for people with MS.
Holly Anderson, Chapter President
We’re here for you We know multiple sclerosis doesn’t wait for a convenient moment, so we don’t want you to wait for assistance. We understand how important it is to receive personalized help that comes at the right time. This guide is intended to help you get support when you need it. And if you have questions that aren’t answered here, MS Navigators® are a phone call away. In these pages, you’ll find information about the programs, resources and services available to anyone affected by MS, plus ways you can contribute to the movement to end the disease forever. We offer in-person support or resources you can access from the comfort of your home, plus opportunities to connect with others and make a difference in your community. Whether you were recently diagnosed, have been living with MS for years, or are a care partner, friend or family member of someone living with MS, we invite you to explore the MS Resource Guide and the many ways the National MS Society can make life a little easier for everyone who’s affected by the disease. 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, visit nationalMSsociety.org or call 800-344-4867 to learn more.
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Get started There’s a sea of information out there, and it can be overwhelming to sort through it all. Count on the National MS Society to be your partner in facing MS. We’re here to help you navigate the challenges of MS with a personalized response to your unique needs. Simply call us or visit our website to get started. In addition to the MS Resource Guide, you should receive regular updates and program information by mail and email, including the quarterly MS Connection newsletter. If you’re not receiving timely information, please contact us. To receive Society emails or manage your email preferences, visit nationalMSsociety.org/signup.
Table of contents Services and support 4-5 Connect with others 6-8 Education programs 9 Health and wellness 10 Research and clinical trials 11 Advocacy and awareness 12 Get involved 13-15
Whether you’re living with MS, or are a care provider, family or friend of someone with the disease, connect with the National MS Society by calling 800-344-4867 or visiting MSsociety.org.
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JOIN THE MOVEMENT®
CARLOS, DIAGNOSED IN 2001
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Services and support Get what you need, when you need it. Finding answers and making sound decisions requires having the right information at the right time. If you’re seeking assistance or need to know more before making an informed decision — simply call an MS Navigator®. MS Navigators are highly skilled professionals equipped to respond to your questions. We know that MS affects not only the person living with the disease, but people closest to them, as well. Whatever your connection to MS may be, the National MS Society is your partner in MS care and will help you access the information, resources and support you need.
Reliable resources and referrals An MS Navigator can refer you to a number of different professional services in your local community, including:
>> Neurologists and other physicians >> Professional counselors and support groups for people with MS, family members and care partners >> Employment specialists to address workplace challenges >> Financial specialists >> Fitness and exercise referrals >> In-home services and respite support >> And many more
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LEXI, DIAGNOSED IN 2009
Be your own best advocate MS Navigators also can give you the tools, resources, knowledge and confidence to help make decisions concerning your needs, opportunities and rights. Examples include:
>> What you need to know when newly diagnosed >> Treatment options and symptom management strategies >> Access to optimal health care >> Understanding benefits such as health insurance >> Handling financial challenges and planning for the future >> Managing life changes Whether your needs can be addressed in a few phone calls, or you’re facing multiple, complex issues, an MS Navigator can work with you to develop an action plan. Addressing financial challenges
MS Scholarship Program
Living with MS can mean unexpected and ongoing financial difficulties for you and your family. We may be able to help if you’re struggling to pay for something that helps you maintain quality of life, such as:
Because of the rising costs of tuition and the financial strain MS can put on a family, the National MS Society created a scholarship program to help students who have MS or who have a parent with MS achieve their dreams of going to college. Applications and guidelines for eligibility can be found at nationalMSsociety.org/ Scholarship.
>> Home and automobile modifications >> Mental health counseling >> Equipment and adaptive tools >> Critical short-term needs like rent or utility shut-offs >> Transportation to and from medical appointments >> Respite care services (a break for unpaid caregivers) >> Lawn mowing, snow removal and housekeeping
We’re here to help you keep moving. Call 800-344-4867 or visit MSsociety.org.
>>>> BROOKE, DIAGNOSED IN 2009
Connect with others Local programs
Programs uniquely designed for people with MS, their families and care partners occur throughout the year. Details are listed at nationalMSsociety.org/mnmcalendar, as well as in the quarterly MS Connection newsletter. Want the information to come right to you? Sign up to receive program announcements via mail and email for upcoming activities in your community.
Community Connection Programs Did you know that many local MS programs are coordinated by volunteers? Volunteers are the backbone of our organization. They help build connections far and wide, strengthening both the individual who lives with MS and the entire movement to end the disease. Do you have an idea for a program or activity in your community? We want to help you make it a reality. Community Connection Programs are led by people like you who are interested in hosting an educational or social program for people affected by MS. It’s easy. You come to us with an idea, and we provide you with the training, tools and guidance to make it happen. No one knows your community better than you, and we want to help you make a meaningful impact.
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Connect with MS Clubs and Groups Clubs and groups provide opportunities to create meaningful connections with other people who share experiences similar to your own. More than 100 Upper Midwest Chapter clubs and groups, as unique and varied as each person’s experience with MS, are already meeting on a regular basis. For an updated list of clubs and groups in your area, visit nationalMSsociety.org/mnmgroups or call 800-344-4867. At least one MS club or group meets in the following cities:
Iowa Ames Cedar Rapids Council Bluffs
Des Moines Fort Dodge Iowa City
Knoxville Mason City Sioux City
Waterloo
South Dakota Aberdeen Brookings
Huron Rapid City
Sioux Falls Spearfish
Sturgis
Minnesota and Wisconsin Albert Lea Alexandria Bemidji Brainerd Buffalo/Maple Lake Duluth Faribault
Fergus Falls Forest Lake Grand Rapids Hibbing Hutchinson Little Falls/Pierz Luverne
Mankato Monticello New Ulm Perham Princeton Redwood Falls Rochester
St. Cloud Sartell Staples Stillwater Superior, WI Twin Cities metro (35+ groups)
North Dakota Bismarck-Mandan Bottineau
Fargo Grand Forks
Jamestown Minot
Williston
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Connect with others (continued) MSConnection.org Social networking has become one of the most popular ways to connect online. However, public social networks might not be the most comfortable place to share personal information about living with a chronic health condition like multiple sclerosis. That’s why the National MS Society created MSconnection.org, a social networking website and online community allowing those living with MS, their loved ones and health care professionals to connect in a safe and secure environment. Join thousands of people who are supporting one another and exploring issues that shape our world. Sign up, create a profile and start connecting at MSconnection.org.
One-on-One Peer Connections
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Through the One-on-One Peer Connections Program, you can search for and connect with a peer support volunteer who has “been there” and can provide you with helpful tips, suggestions and emotional support for the challenges that MS throws at you. Connections are made through ongoing telephone or email conversations. Visit nationalMSsociety.org/peersupport to start your ongoing peer connection.
MSFriends Sometimes a person who says “I know what you mean,” is all you need. MSFriends is a helpline that connects you with a volunteer who is living with MS or shares your same connection to MS. Connect today by calling the MSFriends helpline at 866-673-7436. All of your conversations are confidential.
JOE, DIAGNOSED IN 2010
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Education programs Every person’s MS behaves differently. Having the right information at your fingertips will help you feel better prepared for whatever comes along.
Webinar and Telelearning Series Created by the National MS Society and Can Do MS, these webinar and telelearning programs aim to provide information and guidance on current matters essential to living one’s best life with MS. Each free program features topic-area expert(s) by phone with online presentations and a Q&A session. Empower yourself with education from the comfort of your own home for free. Visit nationalMSsociety.org/telelearning to learn more and reserve your spot, or call 800-344-4867.
Access programs any time, anywhere Life gets busy. That’s why the National MS Society has designed a number of informational programs that can be accessed at any time, from anywhere. Learn basic facts about symptom management, treatment strategies, health care and more — or dive right into care partner concerns, intimacy issues and your workplace rights. Visit nationalMSsociety.org to learn more about:
>> My Life, My MS, My Decisions >> Knowledge is Power >> MS Next Step® >> You CAN! >> Everyday Matters >> MS educational videos
LISA, DIAGNOSED IN 1998
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Health and wellness
RONA, DIAGNOSED IN 1986
The road to wellness involves more than just the treatment of MS and it’s symptoms. Wellness is a lifelong journey that involves physical, emotional, intellectual, occupational, social and spiritual dimensions. To learn more about health and wellness, visit nationalMSsociety.org/wellness.
Exercise and MS Studies show exercise not only improves your overall health and well-being, but also can help manage many MS symptoms. Health and wellness facilities throughout the chapter area offer a variety of exercise classes for people with MS. We may be able to help with the cost of exercise programs. For information about classes held near you, visit nationalMSsociety.org/mnmcalendar.
Equipment assistance MSClassifieds.org is a virtual marketplace to buy, sell and donate gently used equipment and assistance items. If you’re in need of equipment and can’t access it through your insurance or through MS Classifieds, call us — we may be able to help.
Live fully, live well Live Fully, Live Well is a comprehensive wellness program for people with MS and their support partners. Live Fully, Live Well covers topics — ranging from eating well to planning for your future to traveling — that affect the whole family in order to strengthen relationships, increase understanding and promote improved health and quality of life. Learn more at nationalMSsociety.org/LiveFullyLiveWell.
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Research and clinical trials Exciting developments in research The National MS Society is a driving force of MS research and treatment to stop disease progression, restore function and end MS forever. The complexity of MS necessitates a comprehensive approach when it comes to research — a strategy that can fuel knowledge and speed better treatments, health care policies and new disease management therapies. We support and fund research activities spanning all research stages, including early discovery research, translational research that brings promising ideas forward into actual therapeutic solutions for testing, and clinical trials. Our unique approach drives the pursuit of all promising avenues that can impact those living with multiple sclerosis. Visit nationalMSsociety.org/research to learn more about the progress we’ve made and major breakthroughs on the horizon.
Clinical trials Clinical trials help determine if a drug is safe and effective for people with MS. People who are willing to volunteer in these studies make it possible for all of us to look forward to new and better drug therapies. For more information about how clinical trials work and how you can participate in local studies, visit nationalMSsociety.org/clinicaltrials.
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ELIZABETH, DIAGNOSED IN 2002
Raise awareness, advocate for change Awareness makes us stronger Multiple sclerosis and the MS movement become better known each year. But more must be done. Every connection counts when it comes to increasing awareness. Every hand we shake, every letter we write to an elected official, every post or video we share on Facebook, every dollar we raise — each connection, no matter how small, has power. Because together, we are stronger. You can help build a greater understanding of MS and the Society’s work by participating in easy awareness activities throughout the year. Mark your calendar with the following dates, and pay close attention to Society communication for ways you can Join the Movement®.
>> MS Awareness Week, March 7–13, 2016 >> World MS Day, May 25, 2016 MS Activists on the frontline Whether you only have a few minutes or want to make a deeper commitment, you can become an MS Activist and help shape policies and programs that impact people with MS. Join the growing MS Activist Network and get behind efforts that focus on affordable health care coverage, accessibility, employment, transportation and more. Through State Action Days, in-district meetings and State Advocacy Councils, advocates contact and meet with their members of Congress, state legislators and others to share their stories and support positive policy changes. Visit nationalMSsociety.org/advocacy to learn more.
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Get involved Participate in a fundraising event Sign up to walk, bike, run or toast your way to a world free of MS. The Upper Midwest Chapter hosts nearly 50 fundraising events that help keep people with MS moving forward. Jan. 15
A Taste of Generosity, West Des Moines, IA
March 4
Little Black Dress Luncheon, Fargo, ND
April 23
Walk MS: Christopher & Banks Iowa Walk
April 30
Walk MS: Sanford Health North Dakota Walk
April 30 or Walk MS: Christopher & Banks Minnesota Walk May 1 May 7
Bike MS: Twin Cities Ride, St. Paul, MN
May 14
Walk MS: Avera Brain and Spine Institute South Dakota Walk
June 10–12 Bike MS: C.H. Robinson MS 150 Ride, MN June 25
Bike MS: C.H. Robinson Iowa Ride, Ankeny, IA
July 20–24 Bike MS: TRAM, MN Aug. 6
Bike MS: Sanford Health Sioux Falls Ride, SD
Aug. 18
On the Move Event, Minneapolis, MN
Aug. 20
Muckfest MS™, location TBD
Sept. 23–25 Challenge Walk MS: Twin Cities, MN
Many people say one of the best ways to feel in control of your MS is getting involved and giving back. The MS community is strong — but the Society needs your support so that we can continue to fund research, programs and services that make living with MS a little easier. Every person matters!
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Get involved (continued) Create your own fundraiser. We’ll give you the tools. Do It Yourself (DIY) Fundraising provides tools to raise awareness and funds in new and creative ways. From golf outings to dinner parties, bake sales or bowling tournaments, no DIY event is too big or too small. Start your own DIY event today and receive:
A DIY fundraising toolkit n Online fundraising capabilities n Society staff support n Opportunities for marketing assistance
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If you’re interested in starting your own DIY event or would like to support an existing one, visit nationalMSsociety.org/DIY or call 800-344-4867.
Finish MS Finish MS offers runners, cyclists, swimmers and endurance athletes of all types and abilities the chance to change the world for people living with MS while pushing their own personal limits. You pick the challenge: run a marathon, climb a mountain, complete a triathlon. Athletes all over the country are taking on remarkable challenges and using the fundraising tools provided through Finish MS to help build awareness and create a world free of the disease. Visit FinishMS.org to learn more.
Become a Team Ambassador Your story is a powerful tool that can fuel progress to end MS. Let us connect you with a Bike MS team to illuminate the impact of their fundraising efforts. By reaching out to a team through a letter or in person, you can establish a personal connection that creates a more meaningful event experience that motivates them to raise more funds. If you’re interested in learning more about becoming a Team Ambassador, contact volunteer staff at 800-344-4867.
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Volunteer National MS Society volunteers are critical to the mission and are often the face of the organization. There are a number of one-time or ongoing volunteer opportunities throughout the year — spend a morning slicing bananas for cyclists or help with daily administrative support. Whatever your skill set, by volunteering, you help stretch donor dollars and build a stronger organization.
Event support Society fundraising events would not exist if it weren’t for the hundreds, sometimes thousands, of volunteers who help ensure participants have a smooth, fun and meaningful experience. From photographers to truck drivers, to finish line cheerleaders and massage therapists, there are a number of volunteer positions that need to be filled each year.
Administrative and outreach assistance Volunteers who assist in administrative work help with projects related to community outreach and engagement. Projects include phone calls, data entry, mailroom assistance and more.
Community Connections Volunteer Volunteers have a unique understanding of the needs and wants of their community. That’s why volunteers are crucial in coordinating local MS programs. Whether planning a social or educational program for their community, their efforts make a positive difference for those living with MS. To learn more about how you can Give the gift of time and lead your own program, see page 6.
talent. To get involved, visit nationalMSsociety.org/volunteer.
2016 MS Resource Guide The National MS Society knows how important it is to
MS stops people from moving.
receive personalized assistance that comes at the right time. No question is too big or too small.
We exist to make sure it doesn’t.
We’re here to help.
SCOTT, DIAGNOSED IN 2003
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