2019 Theme: #MyositisLIFE
Myositis Awareness Month, May 2019, will focus on living with and caring for those with Myositis, what we call #MyositisLIFE.
Myositis, in our case refers to the Idiopathic Inflammatory Myopathies, is a term meaning inflammation of the muscles. There are several types of this rare, systemic autoimmune disease including dermatomyositis, polymyositis, inclusion body myositis, and necrotizing autoimmune myopathy.
MSU’s educational theme will be two-fold. MSU recognizes that myositis patients often lean on each other in the support groups, and their “IRL” family and friends to stay positive and have a wonderful life despite being ill, and on the other hand they draw on the chronic illness notion of being a Warrior for strength as they face adversity. MSU’s 2019 Awareness theme is Living your best #MyositisLIFE as a #MyositisWarrior! Some of the more difficult parts of having Myositis are discussed in short social media posts throughout the month such as: the mental fatigue that come with Myositis, what it’s like to have Myositis and go to the ER, how the pain medicine debate has harmed Myositis patients, the insurance issues with prednisone being the only FDA-approved drugs for Myositis, and others pertaining to the relative invisibility of Myositis and various ways that impact members (including disability). Each topic will then refer readers to MSU’s newly launched #MyositisLIFE website which will be a collection of stories by MSU members telling their own stories about real life, good, bad, ugly…RAW MyositisLIFE! MSU hopes these efforts will assist patients in advocating for themselves and spreading awareness in May and beyond.
Upcoming Myositis Events
Part of our commitment to myositis patients, myositis caregivers, and the public is to provide education about topics surrounding the various forms of myositis.
We also host monthly online video support sessions. See a listing of upcoming education sessions below. All events are free. Some require registration.
Register to attend these sessions
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 26, 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.