MS Resource Guide, 2014
Whatever your connection to MS may be, use this guide to get the information and support you need.
Upper Midwest Chapter ANNUAL programs and resources guide s e c s r n u o o i t s c e r onne c wer t n o e p m e v m o e m Whatever your connection to MS may be, use this guide to get the information and support you need. MS Resource Guide making connections that empower a movement 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 MS. 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. A message from the president 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. I encourage you to look through this entire guide — you’ll quickly learn about all the ways the Upper Midwest Chapter educates and empowers people affected by MS. We offer helpful programs and services to meet the critical needs. We host exciting fundraising events to give supporters a meaningful role in the MS movement. We fund the most innovative and cutting-edge MS research. When you’re done reading, store this guide for safekeeping, and refer back to it throughout the year. 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 MS Resource Guide | 3 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. Living your best life with MS means you’ll need to spend more time identifying your immediate and long-term needs, researching the best options and making informed decisions. 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. Table of contents Find resources and support 4-5 Connecting with others 6-7 Education programs 8 Health and wellness 9 Research and clinical trials 10 Get involved 11 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. JOIN THE MOVEMENT® 4 | MS Resource Guide Find resources 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 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 their loved ones as well. Whatever your connection to MS may be, the National MS Society is your partner 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 n MS, family members and care partners 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 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 800-582-5296 MSsociety.org | 5 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 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: Don’t let MS stand in the way of your education 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 first-time college 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 MSsociety.org. 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 Get started here to with help an ® MS Navigator you keep moving. . Call 800-582-5296 or visit Call 800-582-5296 or visit MSsociety.org. MSsociety.org. 6 | MS Resource Guide Stay connected Programs uniquely designed for people with MS, and youth, families, care partners and young adults in their 20s and 30s affected by MS occur throughout the year. Details are listed in the quarterlyÂ MS Connection newsletter and at MSsociety.org. Want the information to come right to you? Sign up to receive program announcements via mail and email for upcoming activities in your community. Connecting with people makes all the difference. 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 that are just as unique and varied as each personâ€™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. At least one MS club or group meets in the following cities: Iowa Burlington Carroll Cedar Rapids Clinton Davenport Des Moines Dubuque Fort Dodge Iowa City Knoxville Mason City Oskaloosa North Central Sioux City/ Dakota Dunes Waterloo/Cedar Falls South Dakota Aberdeen Brookings Huron Mitchell Rapid City Redfield Sioux Falls Spearfish Watertown 800-582-5296 MSsociety.org | 7 Minnesota and Wisconsin Albert Lea Alexandria Belview Brainerd Buffalo/Maple Lake Cambridge 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 Windom/ Cottonwood County North Dakota Bismarck-Mandan Bottineau Dickinson Fargo Grand Forks/ Red River Valley Jamestown Minot MSConnection.org MSconnection.org provides easy access to the best content and resources the MS community can bring you. Learn about topics that are most important to you, connect with people who you want to connect with and have expert information right at your fingertips. Peer One-to-One Connections Through Peer One-to-One Connections, you can search for and connect with a peer-support volunteer who has â€œbeen thereâ€? and can provide you with helpful tips, suggestions and emotional support for the challenges that MS throws at you. Start your ongoing peer connection at MSconnection.org. MSFriends MSFriends is a helpline that connects you with a volunteer who is living with MS or shares your same connection to MS. Call 866-MSFriends to start the conversation. 8 | MS Resource Guide Stay informed Education programs Teleconference Series Each month, an MS specialist provides up-to-date information on a specific topic in a one-hour teleconference format. Empower yourself with education from the comfort of your own home for free. Access programs anytime, anywhere Life gets busy, but understanding MS and how to live your best life with the disease should remain a priority. The National MS Society has designed a number of 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 MSsociety.org and learn more about: MS Learn Online n My Life, My MS, My Decisions n Knowledge is Power n MS Next Step® n You CAN! n Volunteer initiated programs You can help build a strong, informed community moving us all closer to a world free of MS. Volunteer Initiated Programs (VIPs) are planned and executed by dedicated volunteers who create opportunities to educate and connect in ways that are meaningful to other people living with the disease. Volunteers who would like to host their own program receive training, guidance and basic marketing support to measure success. Every person’s MS behaves differently. Having the right information at your fingertips will help you feel better prepared for whatever comes along. 800-582-5296 MSsociety.org | 9 Stay independent, live healthy Take control of your independence and learn how to make healthy decisions. 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. The Upper Midwest Chapter partners with health and wellness facilities throughout the chapter territory to offer water exercise, yoga, Tai Chi and land-based strengthening classes for people with MS. Plus, we can help with cost of exercise programs. Equipment assistance MSClassifieds.org is a virtual marketplace to buy, sell, donate and find goods to help people with MS move their lives forward. 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 designed for people living 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. Visit MSsociety.org and search “Live Fully, Live Well” to learn more. 10 | MS Resource Guide 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 new 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 MSsociety.org and search “Clinical Trials.” 800-582-5296 MSsociety.org | 11 Get involved Many people say one of the best ways to take control of 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! Participate in a fundraising event or host your own 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 support the work that keeps people with MS moving forward. You also can take advantage of online fundraising tools to execute your own unique event. DIY (Do It Yourself) events range from golf tournaments to bake sales, from sailing competitions to neighborhood potlucks. Create your own movement. We’ll give you the tools. Become an MS activist 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 accessibility, affordable health care coverage, employment, transportation and more. Activism can be as easy as sharing your story. Visit MSsociety.org/takeaction to learn more. Sign up to volunteer We’re here to help you keep moving. Call 800-582-5296 or visit MSsociety.org. 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 office work. Whatever your skill set, by volunteering, you help stretch donor dollars and build a stronger organization. Join the Movement® 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. making connections that empower a movement We’re here to help 800-582-5296 | MSsociety.org facebook.com/UpperMidwestMS twitter.com/UpperMidwestMS tinyurl.com/UpperMidwestVideos @UpperMidwestMS 2014 MS Resource Guide