UPDATES for May 2021, Myositis Awareness Month are coming soon!  If you are not a registered member you will not receive the email updates. Register for your free membership to stay updated, and to be a part of what we are doing together with the community. 

Coming soon: Unique educational and informational webinars, giveaways, game night, and so much more!

May is Myositis Awareness Month!

MSU is a Forest.

Join us for educational webinars, video discussions, video support, Take Action opportunities, and so much more.

MSU helps myositis patients see the forest as well as the trees.  

As you may know by the common idiom you can’t see the forest for the trees,” it is often easy to lose your perspective when you are so focused on the trees or the details of a situation. Being diagnosed with myositis can be overwhelming. There is so much information that we tend to lose sight of the most important part – the forest,” or in this casethe help and support MSU extends. MSU can help you see the forest as well as the trees.  

Like a forest is made up of many trees, MSU is made up of many resources and guidancecreating the strong community it is. 

Continuing from last year’s Take Action campaign, we will be providing empowering opportunities for patients and caregivers so we can Take Action together! Our plans are evolving and we will be updating this page more, very soon.

Here are some things you can do right now though:

  • Start building your May MSU Myositis fundraiser, and create a team to make it even more fun! Visit  https://secure.givelively.org/donate/myositis/myositis-awareness-month-may-2021 to get started.
  • Commit to donating to help us continue providing the Myositis Patient Financial Assistance Program and supporting patient-centered research.
  • Stay Tuned for upcoming announcements, empowering patient opportunities, and share them with your friends and family.
Myositis Awareness Month apparel campaigns

Myositis Apparel Campaigns! 

May is Myositis Awareness Month and as we always do, we have launched the official MSU apparel campaigns that reflect the heart of MSU with messages of hope, love, and unity.

Our official theme, “MSU is a Forest” is based on the saying you have probably heard, “You can’t see the forest for the trees.” The diagnosis and information that Myositis patients receive can be so overwhelming that we tend to lose sight of the “forest” or the help and support available to us. MSU helps myositis patients see the forest as well as the trees. Like a forest that is made of many trees, MSU is made up of many resources, programs, members, and support opportunities. The team has created several apparel items to help you spread this awareness message about Myositis and the mission of MSU.

The #MYORainbow shirt represents the theme “Wear your colors in unity with MSU!” The #MYORainbow Campaign, which we intend to run again later as well, celebrates our differences through the expression of love and the embrace of unity! The rainbow has several meanings. To some, the rainbow symbolizes hope after a storm. To the LGBTQIA+ community, the rainbow symbolizes pride. To others, the rainbow symbolizes the breathtaking beauty of nature.

To MSU, the rainbow symbolizes all of this and the power of unity.

The #MYOHeartsandMinds shirt represents the message, “Muscle disease reveals one’s inner strength!” This design symbolizes the internal warrior strength that myositis brings out in all of us. Strength comes in many forms. It can be physical, mental, or emotional. We can even find collective strength in our community support for one another! MSU is proud of the strength our members show each and every day, even when our bodies don’t do what we want!

The #MYOForest shirt represents the message, “You are never alone. MSU is a forest of support for the MSU community.” MSU helps people with myositis see the forest. MSU is an all-volunteer team that knows the myositis experience and understands how important it is that people living with myositis never feel alone. We are proud to be a leader in community-based advocacy, and even more so in our conscious inclusion of people from all backgrounds.

Each of these designs reflects the heart, mind, and mission of MSU, the heart of the myositis community.

To purchase your Myositis Awareness apparel, you can start with the three (3) campaigns below:

#MYORainbow Link: https://www.customink.com/fundraising/myorainbow

#MYOHeartsandMinds Link: https://www.customink.com/fundraising/myoheartsandminds

#MYOForest Link: https://www.customink.com/fundraising/myoforest

In the coming days there will be additional purchase opportunities for some accessories! By purchasing MSU Myositis Apparel, you not only help spread awareness, but you join the collective effort in supporting MSU, its patient-centered programs, and its naturally diverse members.

Due to COVID production and supply issues at the close of the campaign Custom Ink may contact you if a size/color combination is temporarily unavailable to do a substitution of a similar color. This is completely out of our control and MSU has worked with Custom Ink to try to pick styles that will be the least likely to have this occur. If that happens, please keep the spirit of our campaigns in mind and consider being flexible, as we know our members always are!! Let’s make this a great campaign!

“The Grieving Project” by award-winning artist, Lisa Sniderman, Aoede, is a new inventive, unique spoken word audiobook intended to speak to and empower those of us with chronic illness, loved ones and caretakers to grieve our losses from illness, and inspire us to thrive. Lisa, who is living with dermatomyositis, is donating 50% of the sales of this album to MSU. Learn more about the project. It is available now on Audible.

Upcoming Webinars & Events

Providing free easy-to-access and understand education about the idiopathic inflammatory myopathies (myositis) and related topics, and now, COVID-19 is crucial. Register to join our free webinars. We have put a lot of heart into planning these timely and unique sessions. Additional events are being planned! 

4th Annual A Day of Remembrance

The Fourth Annual “A Day of Remembrance” will be held in September. The final date to be announced soon. If you have lost someone special with myositis, you can share their information and some photos we can include to publicly remember them during this video event.

The Third Annual “A Day of Remembrance” video event premiered Sunday, September 27, 2020. Each year we honor and remember those we have lost with myositis. And, this year, an urgent call to action to get involved.

Myositis Patients, Take Action!

The time for waiting is over.

NOW is the time to get involved and to take action.

Now is the time for you, as someone living with myositis, to raise your voice, to be heard, and to take action. Whether you participate in a survey, join a registry, enroll in a clinical trial, donate plasma, educate others, or take part in any number of other things, you can take charge today and contribute to accelerating myositis research and expanding outreach and advocacy.

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.

Facebook cover images

UPDATES FOR 2021 COMING SOON. 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

UPDATES FOR 2021 COMING SOON. 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.

  • 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 Some Myositis Money

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

Have fun and educate your family members and friends by creating a Team Fundraiser!

To get started, click the button below. Choose from the options and get creative with your campaign. We are here if you have any questions. Email info@understandingmyositis.org Have fun with the fundraiser, but remember to share, share, share!

Create a Fundraiser, and Team

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


Check out the 2020 Myositis Awareness Toolkit!

Download 2020 Toolkit

MSU Myositis Awareness

Sponsored by

Kezar Life Sciences, a 2020 sponsor of MSU and Myositis LIFE

© 2021 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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