Celebrate MS Awareness Week!

Transcription

1 Celebrate MS Awareness Week! Thank you for your interest in MS Awareness Week! In this toolkit are ideas and tools that can help with your plans for raising awareness in your community. One of the most important things you can do during MS Awareness Week is simply connect with someone who s interested in learning more about multiple sclerosis or getting involved with the National MS Society. Every connection counts. You have the power to inspire, educate and motivate people to get involved. We re interested in learning what you re up to. Whether you re planning an awareness event or fundraiser, starting an MS awareness discussion with your local MS group or club, hanging posters in your community, sharing your story with a group or posting pictures on Facebook, we want to hear about it! If you have an event or activity planned where you ll need additional display materials, or if you want to share your plans, contact Amanda Shelley at amanda.shelley@nmss.org or (317)

2 Get Involved During MS Awareness Week Wear an orange wristband or a National MS Society shirt, and use it as a conversation starter. Check out the Society online store visit to order swag. Set up an MS awareness hour in your work / school cafeteria, lobby, etc. Hang posters advertising when and where. Provide materials about MS, and offer examples of how they can get involved. Contact your local college or university to set up a display to recruit volunteers and participants for Walk MS or Bike MS events. Grab a friend and ask local businesses, retail stores, schools, hospitals, restaurants, etc., if they d be willing to hang an MS Awareness Week poster or distribute Walk MS or Bike MS information. Acquire an MS Awareness Week proclamation in your city. Share your story with five people, and ask them to join you in the MS movement. Speak to a group of people about MS, and share your story about how and why you re involved. Write a letter to the editor of your local paper. Many volunteers have successfully had their letters printed. Include information about MS Awareness Week in your newsletters at work, school, church or other community organizations. Bring a special orange treat to work or school, and use it as an opportunity to talk about MS Awareness Week. Ask a local bakery to make orange-frosted cupcakes or cookies for MS Awareness Week.

3 Visit MSconnection.org to check out the national awareness campaign and find digital downloads you can use to raise awareness online. Connect with us on Facebook or Twitter and invite your friends to join! Find us at facebook.com/nationalmssocietyindianastatechapter or twitter.com/nmssindiana. Hold a fundraiser in your community. If you haven t already, start a Walk MS or Bike MS team, and start fundraising and recruiting members.

4 How to Talk about MS and the Society MS Awareness Week is March 3-9, This is a time for people affected by MS to connect with others, share knowledge and take action to increase awareness about the disease. MS destroys connections. So it s only fitting that connections would be its greatest enemy. Every connection counts. Visit MSconnection.org to share why you connect. Join us for Walk MS! Visit walkmsindiana.org to find a location near you. The National Multiple Sclerosis Society Indiana State Chapter serves nearly more than 7,500 Hoosiers living with MS, although many more could be living with the disease. About Multiple Sclerosis Multiple sclerosis is an unpredictable, often disabling disease of the central nervous system. MS interrupts the flow of information from the brain to the body and stops people from moving. Symptoms can range from numbness and tingling to paralysis or loss of vision. The symptoms of MS appear because nerves in the brain and spinal cord lose their ability to effectively transmit signals. Myelin, a substance that surrounds and insulates nerve fibers, is essential for nerves to conduct electricity and carry out their function. Myelin is destroyed in MS. MS symptoms are unpredictable and vary from person to person and from time to time within the same person.

5 The progress, severity and specific symptoms of MS in any one person cannot yet be predicted, but advances in research and treatment are moving us closer to a world free of MS. 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. Facts to know about MS MS affects more than two million people worldwide. MS is usually diagnosed between the ages of 20 and 50. MS is not fatal, contagious or directly inherited. MS affects two thirds more women than men. While there are a number of treatments for MS that can reduce relapses and slow progression of the disease in many people with MS, no one knows what causes MS and there is no cure. About the National Multiple Sclerosis Society Multiple sclerosis stops people from moving. The National MS Society exists to make sure it doesn t. The National Multiple Sclerosis Society supports more MS research, offers more services for people with MS, provides more professional education programs and furthers more MS advocacy efforts than any other MS organization in the world. In 2012 alone, through its national office and 50-state network of chapters, the Society devoted $164 million to programs and services that assisted more than one million people. To move us closer to a world free of MS, the Society also invested $43 million to support more than 350 new and ongoing research projects around the world. About the Indiana State Chapter The Indiana State Chapter, founded in 1954, is one part of the 50-state network of Society chapters throughout the country and is located in Indianapolis. The Indiana State Chapter serves more than 7,500 people with MS in 90 counties in Indiana and two counties in northwestern Kentucky.

6 The Indiana State Chapter provides a number of programs and services, including: o Information and referral program, which provides access to the most comprehensive, non-biased and up-to-date information about MS at the touch of a button (by calling FIGHT-MS); o Lending Library, from which individuals can check out various materials about MS; o Financial assistance for home and vehicle modifications, rent assistance, respite care or in-home services and more; o Education programs including a monthly teleconference series that covers a wide variety of MS-related topics, especially research and symptom management; o More than 30 peer-led Self-Help Groups or MS Clubs throughout the state. o Professional education programs that work to teach physicians, nurses, physical therapists and other professionals how to better serve individuals living with MS; and o A number of events throughout the year that allow members of the MS community to rally together to socialize and celebrate their successes.

7 How to Successfully Submit a Letter to the Editor Write your letter Use the Letter to the Editor template from the National MS Society (see below). To [insert editor s name or address it To the editor ]: I live in [insert the town / community you live in], and I m one of millions of people who connected to end multiple sclerosis. I m writing to ask for your help in changing the lives of people living with MS in this community and across the country by publishing the following letter. Multiple sclerosis is a chronic disease of the central nervous system, for which there is no cure. MS interrupts the flow of information within the brain and between the brain and the rest of the body. Thanks to growing collaboration around the world; however, there are improved treatments leading to enhanced quality of life for people living with MS. MS divides minds from bodies, pulls people from their lives and away from one another. MS is a destroyer of connection. But it s possible to build connections that MS cannot destroy. Our connections raise questions, find answers, bring knowledge and provide hope. Every connection we make is a small victory and, together, our small victories create larger ones that will help end MS forever. Every connection counts. I know the effects of MS. [Insert your connection to MS here (i.e. I have MS, my wife has MS, or I volunteer with the local chapter of the National MS Society)]. Beginning with MS Awareness Week March 3-9, I encourage people to connect in a way that s most meaningful to them, as there s no more powerful way to end MS. It s easy to get involved; visit MSconnection.org. It only takes a few minutes to make a difference in the lives of the millions of people worldwide who live with this disease. [Insert a brief statement about the difference that being involved with the National MS Society makes in your life personally or in your community.] Signed, [Insert your name and town / community you live in]

8 Insert your personal story and connection to MS. Provide a brief example of what MS is and how it affects people. Include your name and the name of the city in which you live. Identify where you want to send your letter Look in your local newspaper or on your newspaper s website to identify where to send your letter and in what format. In most cases it will be an address or an online submission form. Send your letter If possible, send your letter at least a week in advance. Each newspaper is different and will need different lead time. Don t worry if your letter isn t published until after MS Awareness Week. It s important that we are raising awareness year round! Follow up Keep an eye on the newspaper or the online version to see if your letter is published. If the newspaper contacts you to let you know they are printing your letter, let us know! We d love to hear your great news and see a copy of your letter. Suggestions from volunteers who have had success: I wrote a letter to the editor of the newspapers in the communities I have lived in over my life. I included just a bit of my history with MS, my connection to that community and the fact that it is MS Awareness Week. I pretty much followed the template but tweaked it to personalize it a bit. Jon Englund, volunteer I wrote my letter the week before MS Awareness Week and it was published the week after MS Awareness Week. The editor will usually need advance notice to put something in the paper. I encourage you to send it as soon as you can. Tammy Lauer, volunteer

9 How to Write a Letter to Your Legislator Sharing your story is a great way to energize our grassroots movement and build important relationships with elected officials. Your story is compelling and persuasive because it is authentic; it is your own experience. However, to be sure your story is heard and understood, it is important that you communicate in a clear and organized fashion. First things first Use the proper salutation at the beginning of your story. *If you re writing your state legislator use, Dear Senator, or Dear Representative *If you re writing to your U.S. Senator or Congressperson use, Dear Senator, or Dear Congresswoman/Congressman Identify yourself as a constituent. Thank your legislator for their past support. Letting them know that you appreciate their efforts, even if you disagree with their position. Doing this will make them more likely to listen. Legislators often receive more complaints than compliments, so it is beneficial if you position yourself as someone who recognizes they are working hard to represent you and your community. Getting to know you Use this first part of your story to introduce yourself. Try to keep the following questions in mind when you write your introduction: What is your connection to MS? What specific bill or issue concerns you? To ensure your elected official understands how the issue specifically affects you, please refer to only one issue. If there are additional issues that affect you, feel free to write more than one letter. In your own words Use the second part of your letter to describe your personal experience. Give your elected official a detailed picture of the affect MS has on your daily life. Keep in mind these questions when you write the body of your story:

10 Specifically, what challenge in your life motivated you to write your story? How can your elected official help with this issue? Remember, your voice and your words are persuasive because they are genuine! Just to recap Use the last part of your story to remind your elected official why you wrote to them and what action you would like them to take. Keep in mind the following questions as you write the conclusion of your story: Why did you write your elected official and what would you like them to do? How will their action positively impact your situation? Please remember to thank your elected official at the end of your story for their time and consideration!

11 How to Host a Fundraising Event with a Restaurant Written by Society volunteer and top fundraiser Rox Watercott Pick a restaurant close to where you work or live Be sure to know a little about the restaurant. o Are they open for lunch and dinner? o What are the hours of the restaurant? Make sure the food prices are not too high, or you won t get people to attend. Look at the restaurant's website to see if they say anything about fundraising events. This will give you additional information before calling or talking to the restaurant. Visit or call the restaurant Ask for the manager on duty. Be sure to get the manager s name. Ask if they do any fundraising meal events. o If yes, ask what they do. o If no, ask if they d be willing to. Start planning event Pick a date for your event. o Some restaurants will not do Fridays or Saturdays. o Be sure to pick a date a couple weeks out so you have time to promote. o Ask the restaurant if they will hold the event all day. Be sure to know the hours of your event: lunch and dinner/open to close, so you know how to advertise it. Will the restaurant cover bar drinks in your fundraiser? Ask the restaurant how much they are will to donate most restaurants will do 20 percent or 25 percent of the total bill. Ask the restaurant how they will track bill totals. o Some restaurants require the person dining to bring in a flier to give to the server. o Some restaurants want you to mention the fundraiser to your server. o Some restaurants will put notices on each table or the front desk talking about the fundraiser. See how your restaurant will handle it.

12 o Be sure the restaurant has all your contact information so they can get in touch with you if something comes up. Advertise event Send s to all your friends letting them know about the event. Post on your Facebook page. If you can, post at your place of employment. Ask friends to notify friends and post it. Two days before event Call the restaurant to be sure they remember your event and that they are all set on their side. Send reminder s to advertise with people you know. Repost on Facebook and your place of employment. Day of the event When you arrive at the restaurant, be sure to ask for the manager and let them know you re the fundraiser coordinator, and if they have any questions to let you know. The restaurant manager may need some information from you if they didn t get it beforehand, such as how to send the check to the National MS Society, Upper Midwest Chapter. Day after the event Follow up with the restaurant to see if they have any questions. o If you know the manager you worked with works during the evening, call then or call when you know she or he is working. o Ask to be sure the manager has all the information needed. o Ask if the manager knows what the total of the check will be. o Ask when she or he will be mailing the check. Send a thank-you letter to the restaurant. o If you have the manager s name, address it to her or him, otherwise send it directly to the restaurant and thank them for hosting the event. Additional notes If you find you didn t make that much money, try a different restaurant next year. If you had a great event, take your business back to the same restaurant. It s good business for them. Make some notes on how you can improve things for your next restaurant event.

13 Spread the Word by Hanging Posters Written by Society volunteer Colleen Sazama Make a plan and prepare Make a list of the businesses you d like to visit or contact. Optional: Consider contacting the local paper, and do an interview. o Let the paper know it s MS Awareness Week, and there are exciting ways the community can get involved to create a world free of multiple sclerosis. o We like the article to come out on Wednesday during the week, and then we plan our visits for Thursday or Friday morning. That way, we hear lots of: I saw you in the paper! Dress in National MS Society shirts, scarves and other orange items to stand out in the crowd. Have plenty of the following items. o MS FAQ fliers o Information about Walk MS and Bike MS o Specific information about local MS clubs and groups Hit the streets Visit one of the businesses on your list, introduce yourself and ask if manager or owner is available, or if there is someone else to speak to about MS Awareness Week. Introduce yourself as a community member and share information about MS and your connection. o Example: Hi, my name is Colleen Sazama. It s MS Awareness Week, and we re getting the word out about multiple sclerosis and ways to get involved in our area. Are you familiar with MS? o You ll learn how much the business owner knows about MS at that point. Use it as an opportunity to share your connection to MS and about how the community can get involved with MS. Hand out MS Awareness Week posters and other information. o Ask if it would be ok to hang a poster or leave some information. o If your community has a Walk MS event nearby, ask if it would be okay to display posters, trading cards or other information about Walk MS.

14 o Consider letting the business choose where and how to display, or you could offer to choose for them. Some businesses also place in the employee break area. Words of advice No two people with MS are alike and no two businesses are either. Your approach will likely be different for each business. Being prepared is the most important part. Practice your pitch, and make sure you have plenty of materials on hand. Have fun! This is a great opportunity to connect with people in your community.

15 An online group for young people with MS helps a young man in New York find other people in his community. His neurologist starts recommending online support as a resource for her MS patients. Every Connection Counts at MSconnection.org

16 A woman tells her support group in California about sharing her MS-related fears with her daughter for the first time. A group member blogs about it, inspiring a woman in Dallas to reconnect with her own family. Every Connection Counts at MSconnection.org

17 A father in Minnesota shares how he s feeling. It stops a woman in Oregon, who s lost her job and her boyfriend, from wanting to give up. Every Connection Counts at MSconnection.org

18 A woman in Georgia posts an article on how personal appearance affects mood. A woman in New York decides to start a program that gives makeovers to people with MS. Every Connection Counts at MSconnection.org

19 A man in Arizona clicks share on an article about how to keep health insurance coverage. It stops a woman in New Hampshire from losing her health insurance, which means she can afford her daily medication. Every Connection Counts at MSconnection.org

20 Understanding and ending MS can t come fast enough - it will take all of us working Finding solutions for people with MS is our highest priority Research is essential to finding solutions that change lives together. We will fuel research through increased investments a record-breaking $50 million in 2014 Our goal: STOPPING THE DISEASE RESTORING WHAT S BEEN LOST ENDING MS FOREVER Our approach is comprehensive and focused, and we collaborate worldwide We pursue all promising paths to uncover solutions for EVERYONE with MS, while focusing on three priority areas: Progressive MS Nervous System Repair, including Myelin Repair Wellness and Lifestyle And while we drive our priority areas, we remain nimble to seize promising new opportunities

21 The Society is the best investment in driving solutions and changing the world for people with MS. A few examples include: Recruited more than 800 new MS researchers to the field Provided early career support and funding to nearly every thought leader in MS research Set standards in diagnosis, symptom management, pediatric MS, complementary and alternative medicine, rehabilitation research, clinical trial strategies and stem cell research Established the MS field of nerve and myelin repair which resulted in trials for treatment Drove research uncovering genes contributing to MS susceptibility and new treatment avenues Paved the way for all existing therapies none of which existed 20 years ago Give now. NOW and No Opportunity Wasted utilized with permission from NOW, Inc., and in partnership with Phil Keoghan, tireless advocate and Champion for MS Research.