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“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.

September 2020 Myositis Awareness and Action

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

Join us for webinars, video discussions, Take Action, The Myositis Empower Walk, updates about MSU, and much more.

The world turned upside down with the appearance and rapid worldwide spread of COVID-19. MSU quickly shifted focus and resources to how to best support the myositis community during the pandemic while ensuring we continue promoting awareness of the idiopathic inflammatory myopathies, the group of rare systemic autoimmune diseases, collectively called myositis. We hosted a scaled-down awareness month in May, but because The Time For Waiting Is Over, we are making use of September, in which the 21st is Myositis Awareness Day, to begin a new TAKE ACTION campaign for those living with myositis. We will also host various educational, informational, and interactive webinars, the 2nd Annual Myositis Empower Walk, the 3rd Annual Day of Remembrance, and much more. And let’s not forget the vital fundraising we must do to move the myositis community forward.

We at MSU, an all-volunteer, patient-let, patient-centered 501(c)(3) nonprofit organization, proudly serve as the heart of the myositis community, and in May, we celebrated our 5th anniversary. To continue celebrating our 5th year and honoring September 21st, National Myositis Awareness Day, we urge you to get involved and take action now.  Join with us for opportunities from our partners and sponsors, and for education and support. And, create a fundraiser for MSU, advocate with us on an issue, make a donation to help us continue providing the Myositis Patient Financial Assistance Program and supporting patient-centered research. You see, there are many opportunities to act on, some that take very little of your time but make a big difference for our community.

High Fives from the Heart: MyositisLIFE in a Pandemic World, September Myositis Awareness Month
Myositis Empower Walk, The Landman Family

Myositis Empower Walk

The 2nd Annual Myositis Empower Walk was a huge success, raising over $17,000! It was held Saturday, September 19, 2020, in-person at Discovery Park in Henderson, NV, and virtually, LIVE on Facebook! If you missed it, no worries, you can watch the recording.

The Landman Family created the Myositis Empower Walk in loving memory of Robert “Bob” Landman. This year, the Empower Walk introduced the virtual experience, with live participation. We went LIVE on Facebook to Discovery Park with the Landman’s and Shelby, who enthusiastically hosted the LIVE video.

We look forward to the Third Annual Myositis Empower Walk in 2021. The date will be announced as soon as possible to allow you to plan!

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! 

3rd Annual A Day of Remembrance

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, and 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.

Myositis Mask Meme

High Fives for Sharing

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

On our #MyositisLIFE website, upload a picture of you wearing a mask and use your experiences to make an interesting meme. Write a short note or story for the description field of your meme promoting awareness of what it is like to live with myositis during the COVID-19 pandemic. You can also email the description and photo to info@understandingmyositis.org if you have difficulty with web technology.

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

Share your Myositis Mask Meme or your Story

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

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.

  • 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

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!

MSU Fundraising

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

Sponsored by

Corbus Pharma, a 2020 sponsor of MSU and Myositis LIFE

© 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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