We look forward to a more robust celebration of awareness activities in September 2020 including our annual T-shirt campaign, Day of Remembrance in memory video event, fundraising, and additional educational webinars.

May is Myositis Awareness Month &
MSU's 5-year anniversary as the heart of the myositis community

High Fives from the Heart: #MyositisLIFE in a Pandemic World

Myositis Support and Understanding (MSU), an all-volunteer, patient-focused 501(c)(3) nonprofit organization, serves as the heart of the myositis community. During May, MSU celebrates Myositis Awareness Month and our 5th anniversary. To honor MSU’s 5th Anniversary we will use Myositis Awareness Month, and all of 2020, to highlight our five main patient-centered programs that are a part of our mission to improve the lives of and empower those fighting myositis.

The world turned upside down with the appearance and rapid worldwide spread of COVID-19 and MSU quickly shifted focus to how to best support the myositis community during the pandemic while still promoting awareness of our rare autoimmune diseases, the idiopathic inflammatory myopathies, collectively called myositis. We look forward to a more robust celebration of awareness activities in September 2020.

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High Fives from the Heart: MyositisLIFE in a Pandemic World, May is Myositis Awareness Month

High Fives for Sharing

Create your MSU Myositis Mask Meme and share the story of your #MyositisLIFE in a Pandemic World

On our #MyositisLIFE website, upload a picture of you wearing a mask and use creative language to make an interesting meme. Write a short note or story for the description field of your meme post promoting awareness of what it is like to live with myositis during the COVID-19 pandemic.

See Jerry Williams’ Myositis Mask Meme as an example.

If you don’t already have a mask, here are some sew and no-sew mask instructions to make one!

Myositis Mask Meme

Help us understand how patients with myositis feel about COVID-19/the novel coronavirus

We invite you to participate in a survey over time to help researchers and clinicians better understand how patients with myositis and related autoimmune conditions feel about COVID-19/the novel coronavirus.

Myositis Support and Understanding (MSU) is excited to partner on The Arthritis & Rheumatic Disease COVID-19 Project and we invite you to participate in a survey over time to help researchers and clinicians better understand how patients with myositis and other autoimmune conditions feel about COVID-19/the novel coronavirus.

This survey is the first one in a series of follow-up surveys that we will send to you every two weeks for the next 2 months and then again at the 6-month and 12-month mark. We hope you will be able to fill out the repeat surveys so we can continue to track respiratory illnesses across the United States and Canada and keep everyone up to date as things change. Each survey should take you no more than about 10 minutes to complete.

Third Annual Day of Remembrance

Share with us the name of a loved one, family member, or friend who lost their life to myositis so we can honor and remember them during our annual “Day of Remembrance” video event that will take place on Sunday, September 20, 2020.

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.

This event is held in participation with several caring sponsors who are committed to working on behalf of the myositis community through research and by providing patients with needed medications and services.

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 virtual workplace gathering

    In just 30 minutes, you can start off your colleagues’ day by organizing a simple breakfast of bagels/muffins and juice, have a brown bag luncheon, or another creative virtual idea.

    Set up a video conference and enjoy a lunch and learn where 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 will make a donation to help empower the myositis community.

  • Virtual House Party

    A virtual house party is an online event using video conferencing. Invite people you know and organize a featured event during this time, like watching movies, playing games, holding contests, or other creative ideas. During this, talk to your participants about myositis and how it affects your life, and share information about MSU and ways they can support the work we are doing.

  • 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.

  • Share MSU Brochures, Information Cards, and other materials

    Order MSU brochures and information 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 MSU with a donation, 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 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 MSU's Online Shop Shop MSU on Cafepress

Login or Register for your free MSU membership

Register for your free MSU membership and receive email newsletters and updates, and you will have your very own MSU Myositis Network account and profile with the ability to connect with other members. We do not share any personal information with third parties, nor do we spam.

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

Create your Fundraiser

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 Fundraising campaign. Then, click the white “I want to fundraise for this campaign” button! Posting frequent updates with photos for better success!

Join the MSU 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 2020 Myositis Awareness Toolkit!

Download 2020 Toolkit

MSU Myositis Awareness Month

Sponsored by

© 2020 Myositis Support and Understanding Association (MSU). All rights reserved. | View our Privacy Policy, Terms, and Non-Discrimination policy. MSU is a charitable organization with 501(c)(3) tax-exempt status. Federal ID #47-4570748.

The best way to prevent catching or spreading coronavirus is thorough hand washing, social distancing, and social isolation. Should you begin experiencing symptoms of coronavirus, which include fever, cough, and shortness of breath, please contact your doctor immediately. View COVID-19 resources and updates, and stay tuned to your state, local, and federal health agencies, along with the CDC.

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