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.
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!
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.
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.