2019 Theme: #MyositisLIFE
Updates to this page coming soon!
This year we are promoting a longterm investment in awareness and education through our new interactive, patient- and caregiver-centered #MyositisLIFE website. Get ready to share your experiences living with and caring for those with myositis. We are looking for those who enjoy writing about their experiences, including those who wish to join us as an ongoing author. You do not have to have writing experience. We will help you!
Our stories as patients and care partners have the ability to help family and friends better understand what myositis is and how it affects our lives. Our experiences also help others living with myositis to learn they are not alone and can help supporters, industry, and the research community gain interest in these rare systemic muscle diseases.
Some of the various ways you can share your #MyositisLIFE include topic-based writing. sharing through images and with video.
Want to get started now? Simply email us with your information and idea for a topic(s) you want to write about and we will advise you on getting started.
Day of Remembrance
Share with us the name of a loved one, family member, or friend who lost their life fighting Myositis so they can be featured on the live YouTube streaming video event that will take place during Myositis Awareness Month, May 2019.
In previous years, MSU has asked the community to observe a moment of silence; this year in addition to a private moment of silence, we are doing more to ensure we never forget those who fought so hard, in participation with several caring sponsors committed to the myositis community and research.
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.
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.
Register now for your Free MSU Membership
Join us as a member and you will receive email updates when new awareness materials are available and you will have your very own MSU Myositis Network account and profile, and much more. We are working to improve our onsite community, along with many other tech updates and offerings.
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.
Fundraising with Crowdrise
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 Crowdrise campaign. Then, click the orange “Join the Team” 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.
Myositis Awareness Toolkit
Utilize the resources provided in the 2018 Myositis Awareness Toolkit to make a larger impact!
Toolkit updated May 2, 2018, at 11 pm EDT.