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.
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!
- January 29 @ 5:00 pm - 6:30 pm EST |Recurring Event (See all)
An event every month that begins at 5:00 pm on day Last of the month, repeating until January 28, 2022
One event on December 18, 2020 at 5:00 pm
- January 30 @ 3:00 pm - 4:30 pm EST |Recurring Event (See all)
An event every month that begins at 3:00 pm on day Last of the month, repeating until December 25, 2021
One event on December 26, 2021 at 3:00 pm
- February 3 @ 7:00 pm - 8:30 pm EST |Recurring Event (See all)
An event every month that begins at 7:00 pm on day First of the month, repeating until December 1, 2021
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.
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.
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 email@example.com 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!
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.
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.
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 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!
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.