Myositis Empower Walk
The Myositis Empower Walk and Myositis EmpoweRun 5K were created in loving memory of Robert “Bob” Landman by his family to help Myositis Support and Understanding continue with its important patient-centered work. The first Myositis Empower Walk hosted by the Landman family was held on May 19, 2019, in Henderson, Nevada, just outside of Las Vegas.
What is Myositis?
Myositis, referring to the idiopathic inflammatory myopathies (IIM), is a group of rare autoimmune muscle, skin, and often multi-organ diseases, which includes adult and juvenile polymyositis and dermatomyositis, sporadic inclusion body myositis, immune-mediated necrotizing myopathy, and antisynthetase syndrome.
Who is MSU?
We are Myositis Support and Understanding Association (MSU), a patient-centered, all-volunteer 501(c)(3) nonprofit organization founded by myositis patients, and we are empowering the myositis community through education, support, advocacy, clinical trial matching, access to research, and financial assistance.
I need support
Myositis patients and caregivers, join us for free, anonymous, 24/7 global support in the Myositis Support Community in partnership with Inspire. Myositis affects every aspect of our lives. Ask questions, make friends, and connect with those who truly understand #MyositisLife. Also, be sure to check out our monthly live video support sessions.
"My Life as a Vampire"
by Emily A. Filmore
“I am not a vampire. However, at the direction of my dermatologist, I am living a “full vampiric life.”
Emily, who has been living with dermatomyositis for close to 24 years, shares her story of vampire life.
Read and share your own myositis patient and caregiver stories, short videos, photos, and memes at MyositisLIFE.org.
We love and appreciate our myositis caregivers and care partners.
We have put together tips and resources we believe will help you as a member of your loved one’s healthcare team.
Mark your calendar to join for the following sessions. Registration is not available for video support sessions. Join on the date and time listed. View the events for full details.
- July 20 @ 2:00 pm - 3:30 pm EDT
- July 26 @ 4:00 pm - 6:00 pm EDT
- August 6 @ 7:00 pm - 8:30 pm EDT
- August 17 @ 2:00 pm - 3:30 pm EDT
- August 30 @ 4:00 pm - 5:30 pm EDT
Experience of pain and fatigue in adult IIM
Register to attend
This session will describe the experience of pain and fatigue in adult polymyositis and dermatomyositis based on results from qualitative studies. The talk will also touch on how to adapt physical activity and exercise in relation to pain and fatigue. There will also be time for Q&A at the end.
- August 15 @ 2:00 pm - 3:00 pm EDT
We have partnered with Antidote Technologies to make clinical trial matching faster, more refined through the search tool, and by providing you will all of the information you need to make a decision to participate in a clinical trial. And, the trial information is easy to read, adding a huge benefit.
Browse Myositis Videos
Check out our expanding myositis video library, which includes expert- and patient-led sessions about the various types (and subtypes) of myositis, autoantibodies, clinical trials, exercise, pain, overlap syndrome, and other related topics and discussions.
Myositis and Pain
Myositis pain is poorly understood. Some doctors tell patients pain is not a part of their disease. With the misapplied CDC Opioid Guidelines, forced pain medication tapers are causing patients to suffer. We are working to further research in this area.
Giving to MSU
MSU is a 501(c)(3) nonprofit organization and we rely on the generous support of our community members and corporate sponsors for funding. We are an all volunteer-managed organization, so your donation goes further in supporting our mission.