2019 Theme: #MyositisLIFE

2019 #MyositisLIFE Shirt

#MyositisLIFE

Myositis Awareness Month, May 2019, will focus on living with and caring for those with Myositis, what we call #MyositisLIFE.

Myositis, in our case refers to the Idiopathic Inflammatory Myopathies, is a term meaning inflammation of the muscles. There are several types of this rare, systemic autoimmune disease including dermatomyositis, polymyositis, inclusion body myositis, and necrotizing autoimmune myopathy.

MSU’s educational theme will be two-fold. MSU recognizes that myositis patients often lean on each other in the support groups, and their “IRL” family and friends to stay positive and have a wonderful life despite being ill, and on the other hand they draw on the chronic illness notion of being a Warrior for strength as they face adversity. MSU’s 2019 Awareness theme is Living your best #MyositisLIFE as a #MyositisWarrior! Some of the more difficult parts of having Myositis are discussed in short social media posts throughout the month such as: the mental fatigue that come with Myositis, what it’s like to have Myositis and go to the ER, how the pain medicine debate has harmed Myositis patients, the insurance issues with prednisone being the only FDA-approved drugs for Myositis, and others pertaining to the relative invisibility of Myositis and various ways that impact members (including disability). Each topic will then refer readers to MSU’s newly launched #MyositisLIFE website which will be a collection of stories by MSU members telling their own stories about real life, good, bad, ugly…RAW MyositisLIFE! MSU hopes these efforts will assist patients in advocating for themselves and spreading awareness in May and beyond.

Upcoming Myositis Events

Part of our commitment to myositis patients, myositis caregivers, and the public is to provide education about topics surrounding the various forms of myositis.

We also host monthly online video support sessions. See a listing of upcoming education sessions below. All events are free. Some require registration.

Register to attend these sessions

There are no upcoming events at this time.

Day of Remembrance

Share with us the name of a loved one, family member, or friend who lost their life fighting Myositis so they can be featured on the live YouTube streaming video event that will take place during Myositis Awareness Month, May 26, 2019.

In previous years, MSU has asked the community to observe a moment of silence; this year in addition to a private moment of silence, we are doing more to ensure we never forget those who fought so hard, in participation with several caring sponsors committed to the myositis community and research.

While honoring their memory and expressing the sadness of these losses–losses that mean a great deal to our community–we can help others realize the urgent need for continued education at all levels, new and effective therapies, rare disease patients to get involved in clinical trials, and better understanding and increased awareness, all keys in helping to fund nonprofit work and myositis research.

Myositis Warrior 2019 Facebook Frames

Use the MSU Facebook Frames

We have created several frames you can use on your Facebook profile photo. To apply the MSU awareness Facebook profile photo frames, click on your profile photo, choose Frame, and search “myositis.” Apply the frame.

How do I find a frame?

Go to your profile on the Facebook app and tap “Edit” on your profile picture. Then tap “Add Frame”. Search using Myositis Warrior or Myositis Awareness. 

Facebook cover images

To download, simply click on the image, then right-click and choose “save as” or “save image as.” Each browser will word it differently. Then, visit your Facebook profile and add it as your cover image.

Twitter cover images

To download, simply click on the image, then right-click and choose “save as” or “save image as.” Each browser will word it differently. Then, visit your Twitter profile and add it as your cover image.

Ways to promote Myositis Awareness

Promoting Awareness of Myositis can be as simple as talking to your family members and friends about your experiences, ways they can help support patient-centered myositis nonprofits like MSU, and ways they can learn more and get involved.

There are other ways you can help make an even larger impact. Utilizing some of the ideas below can help spread the word to a larger audience. We are happy to help you in any way we can.  Contact us and let us know what you need to make your awareness promotion and fundraising event a success.

  • Contact the health or community reporter your local TV station

    Contact your local TV station or community reporter to go on a local TV show and tell your myositis story. Make it personal to your experiences with myositis and include a very brief explanation about myositis, the importance of awareness, and a little about MSU. We are happy to help you with wording. Just contact us!

  • Contact your local newspaper to run an awareness article

    Contact a local reporter and request they write an article about Myositis Awareness Month that includes your personal experience with myositis and a little about MSU and how we help Empower the Myositis Community. Contact us for help with wording.

  • Send a letter to the editor of print and online newspaper

    Write and share your myositis story and include some information about MSU, which can be found in the Awareness Toolkit, or contact us for help with wording.

    Submit to several local print and online publications. Be sure to check their guidelines prior to submission.

  • Reach out to local and state government officials

    An important way to help promote awareness and understanding is to ensure those who make policies affecting our care are well-educated about myositis and how it impacts our lives.

    Contact your local, state, and federal officials to schedule a meeting. Share your personal myositis story along with how they can contact MSU for more information.

    Order information cards and brochures to provide them with during your meeting.

    Find your elected officials
  • Organize a workplace gathering

    In just 2 hours, you can start off your colleagues’ day by providing a simple breakfast of bagels/muffins and juice, have a brown bag luncheon where you provide dessert, or step out for a lunchtime walk with your colleagues.

    These are times when you can educate your co-workers about myositis and how it affects you personally, and tell them about why you support MSU and ask if they would make a donation to help empower the myositis community.

    You can order brochures and information cards to hand out as well in our <a href=”https://understandingmyositis.org/shop”>Shop</a>.

  • Plan a House Party or Lunch

    A house party is an event, held in your home, in which you invite people you know, and set up to have a featured event during this time like movies, games, contests, or other creative ideas.

    Offer light refreshments, lunch, and/or drinks and during this event, provide your guests with <a href=”https://understandingmyositis.org/shop”>MSU materials</a> and have a fundraising contest. Be creative!

  • Share your content with hashtags, #MyositisLIFE

    When posting to social networking sites, utilize the some of the below hashtags to build upon community-wide myositis awareness content. Learn more about using hashtags in social content.

    #MyositisAwareness, #MyositisWarrior, #TheStruggleIsReal, #MyositisLIFE.

  • Distribute MSU Brochures, Information Cards, and other materials

    Order <a href=”https://understandingmyositis.org/shop”>MSU brochures and information</a> cards through our Shop and hand out to family members and friends, local businesses, physicians, and other healthcare facilities you visit.

    This is a perfect time to ask if they would support you and MSU with a donation of any amount, either online, via check payable to MSU, or through your own MSU fundraiser.

  • Request Myositis Awareness Month Proclamations

    Request a proclamation from your Governor and/or Mayor of your City.

    Below you will find a download for the proclamation guide and a list of web links for each State, making the request process easier this year.

    The proclamation sample wording and list of State contacts are also available in the Awareness Toolkit.

    Download Proclamation Guide Download State Web Resources
  • Purchase and Gift Awareness Gear

    Purchase “Myositis In Focus” Awareness themed gear in our Cafepress Shop for yourself and as gifts for your family members, friends, coworkers, and others.

    Offering awareness themed golf balls, apparel, maternity apparel, dog shirts, drinkware, lunch bags, totes, and much more.

    Get myositis wristbands, information cards, brochures, pens, and bundles in our onsite shop.

    Visit the MSU Online Shop
    Shop MSU on Cafepress

Register now for your Free MSU Membership

Join us as a member and you will receive email updates when new awareness materials are available and you will have your very own MSU Myositis Network account and profile, and much more. We are working to improve our onsite community, along with many other tech updates and offerings.

Raise Money for Myositis

Create your own fundraiser

Facebook Fundraiser

Creating your own MSU Myositis Fundraiser on Facebook is so easy! Visit the MSU public Facebook page fundraiser section, and under the header graphic/video, click the blue “Raise Money” button to get started.

Then, customize the image and wording to make it personal to you. Once ready, complete and start sharing. Share your fundraiser, with updates. often.

Create a Facebook Fundraiser

Fundraising with Crowdrise

Crowdfunding campaigns can be a ton of fun! Ask your family members and friends to join the team and then start sharing the campaign.

To get started, click the button below to visit the MSU Crowdrise campaign. Then, click the orange “Join the Team” button!

Posting frequent updates with photos for better success!

Join our Crowdrise Campaign

Make an online donation

As a nonprofit, we rely on donations for the work we do.

We hope you will make a contribution. We appreciate your support!

Donate Today! See Giving Options

Donate by check

If you would like to make your donation by mailing a check, please make your check payable to MSU and mail to:

9125 N. Old State Road,
Lincoln, DE 19960

If you would like to make the donation in honor of or in memory of your loved one, please include a note with the information.

Myositis Awareness Toolkit

Get the 2019 Myositis Awareness Toolkit!
Toolkit posted April 30, 2019

Download the 2019 Awareness Toolkit

© 2019 Myositis Support and Understanding Association (MSU). All rights reserved. | View our Privacy Policy and Terms.

MSU is a charitable organization with 501(c)(3) tax-exempt status. Federal ID #47-4570748.

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