Upper Midwest Chapter ANNUAL programs and resources guide
MS Resource Guide MS stops people from moving. We exist to make sure it doesn’t.
Whatever your connection to MS may be, use this guide to get the information and support you need.
We’re here for you
A message from the president
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.
Whether you were recently diagnosed or have been living with multiple sclerosis for many years, it’s never too early or late to set goals and take action to achieve them. Living your best life with MS means learning how to overcome the challenges a chronic disease can present, and sometimes it means asking for help. When you have questions or need assistance, the National MS Society is the best place to start. It’s a place where people understand, and it’s a community where people move forward, together.
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.
I encourage you to look through this entire guide — you’ll quickly learn about all the ways the National MS Society educates and empowers people affected by MS. We offer more programs and services and fund more MS research than any other MS organization in the world. Plus, we create opportunities for people with MS to make valuable connections within their own communities and even across the world. When you’re done reading, hold onto this guide and refer back to it as needed. If you don’t see a topic covered, contact us about it. There is no question too big or too small. We want to help everyone affected by this disease to live richer, healthier, more independent lives. Get started by getting connected today.
Holly Anderson Chapter President
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 800-582-5296 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.
Whether you’re living with MS, or are a care provider, family or friend of someone with the disease, connect with the Upper Midwest Chapter by calling 800-582-5296 or visiting MSsociety.org.
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
JOIN THE MOVEMENT®
Services and support Getting 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 NavigatorŽ. 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 n Professional counselors and support groups for people with MS, family members and care partners n Employment specialists to address workplace challenges n Financial specialists n MS-trained fitness and exercise specialists n In-home services and respite support n And many more n
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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 n Treatment options and symptom management strategies n Access to optimal health care n Understanding benefits such as health insurance n Handling financial challenges and planning for the future n Managing life changes n
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. The National MS Society 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 n Mental health counseling n Equipment and adaptive tools n Critical short-terms needs like rent or utility shut-offs n Transportation to and from medical appointments n Respite care services (a break for unpaid caregivers) n Lawn mowing, snow removal and housekeeping n
We’re here to help you keep moving. Call 800-582-5296 or visit MSsociety.org.
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.
Volunteer Initiated Programs Did you know that many local MS programs are coordinated by volunteers? Volunteers are the backbone of our organization. They help build connections in every corner of our 350,000-square-mile chapter area, 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. Volunteer Initiated Programs (VIPs) 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 all 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 800-582-5296. At least one MS club or group meets in the following cities:
Iowa Carroll Cedar Rapids Clinton Davenport
Des Moines Dubuque Fort Dodge Iowa City
Knoxville Mason City Oskaloosa North Central Area
Sioux City/ Dakota Dunes Waterloo/ Cedar Falls
South Dakota Aberdeen Brookings Huron
Mitchell Rapid City Redfield
Sioux Falls Spearfish Watertown
Minnesota and Wisconsin Albert Lea Alexandria Barret Belview Brainerd Buffalo/Maple Lake Canby Chaska Cloquet
Duluth Faribault Fergus Falls Forest Lake Grand Rapids Hibbing Hutchinson Little Falls/Pierz Luverne
Mankato Monticello New Ulm Perham Princeton Rochester Sauk Centre St. Cloud Staples
Stillwater Superior, WI Twin Cities metro (40+ groups) Waseca Willmar
North Dakota Bismarck-Mandan Bottineau
Dickinson Fargo
Grand Forks/ Red River Valley
Jamestown Minot
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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 for people 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 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. Start your ongoing peer connection at nationalMSsociety.org/peersupport.
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.
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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.
Teleconference Series The National MS Society telelearning program for people with multiple sclerosis and their families aims to provide information and guidance on current matters essential to living one’s best life with MS. Each free telelearning 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. Learn more and reserve your spot at nationalMSsociety.org/telelearning 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 n Knowledge is Power n MS Next Step® n You CAN! n Everyday Matters n MS educational videos n
Health and wellness Wellness is a dynamic state of physical, emotional, spiritual and social well-being that can be achieved even in the presence of chronic disease or disability. The National MS Society can keep you moving forward by helping you stay physically and mentally healthy.
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 water exercise, yoga, Tai Chi and land-based strengthening classes for people with MS. Plus, we can 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 goods to help people with MS live their best lives. There is a constantly changing inventory of 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 holistic approach when it comes to research — a comprehensive strategy that can propel knowledge, better treatments, health care policies and new disease management therapies forward, faster. 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. As part of the Society’s research fundraising initiative — NOW: An MS Research Revolution — we’ve committed to raise $250 million by 2016 for research aimed at stopping MS, restoring lost function and ending the disease forever.
Become an MS Research Champion Become an MS Research Champion and proudly let others know you’re helping to lead the MS research revolution. 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.
Raise awareness, advocate for change Awareness — every connection counts 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 and support. Every hand we shake, every letter we write to an elected official, every person in our Facebook network, every poster we put up, every dollar we raise, every video we share — each connection has the opportunity to change the world for people affected by MS. 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 2–8, 2015 n World MS Day, May 15, 2015 n
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 change. Visit MSsociety.org/takeaction 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 across the chapter territory that help keep people with MS moving forward. Walk MS connects people living with MS and those who care about them. Nearly 30 Walk MS events are held in the Upper Midwest Chapter area. Be inspired. Get connected. Walk MS. Bike MS is for cyclists seeking a personal challenge and a world free of MS. Six unique rides in the upper Midwest provide people who love to bike a meaningful way to support people with MS. Challenge Walk MS is more than just a walk. It’s a two-day, 50k challenge that unites people who are especially passionate about advancing research and support for people with MS. MuckFest™ MS is a 5k course of pure athletic hilarity, featuring mud and 20+ outrageous obstacles that will spin, swing and fling you up, down and sideways. Wine tastings, luncheons and auctions provide a unique opportunity for people who are passionate about the MS movement to network while enjoying delicious food, inspiring speakers and more.
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 800-582-5296.
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 create a personal connection that motivates them to raise more funds. If you’re interested in learning more about becoming a Team Ambassador, contact volunteer staff at 800-582-5296.
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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 volunteer 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 volunteer Volunteers who assist in administrative work help with projects related to community outreach and engagement. Projects include phone calls, data entry, donation solicitation and more.
Volunteer Initiated Programs 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, volunteers’ efforts provide a meaningful impact. To learn more about how you can lead your own program, see page 6.
Give the gift of time and talent. To get involved, visit nationalMSsociety.org/volunteer.
MS stops people from moving. The National MS Society knows how
We exist to make sure it doesn’t.
important it is to receive personalized assistance that comes at the right time. No question is too big or too small.
We’re here to help. 800-582-5296 | MSsociety.org
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