Get the Support you deserve
NEW: Myositis Support Gets Moving on Clubhouse every Thursday!
Welcome to MSU! We are an all-volunteer, all-virtual nonprofit organization working to improve the lives of and empower ALL who are impacted by myositis. We do this by providing “from the heart” support on multiple platforms, providing education people can understand, increasing outreach and community-building, patient-centered research, patient financial assistance program, and more.
Register for your FREE MSU Membership to stay updated, and get involved!
Living with myositis is hard enough. We are here to help with our Myositis Patient Financial Assistance Program. We cover certain emergency household expenses, medical bills, and mobility and assistive devices. The program is available to U.S. residents. See full details available in our help guide.
At MSU, we are patients and caregivers, too. We started with support, and with our support programs, you will find a family. Join us for myositis patient and caregiver groups, Zoom support, and rooms on Clubhouse. You are NOT alone in this journey.
We believe in the patient-centered research approach – putting the patient at the center of any collaboration with industry, academia, and government agencies to improve the quality of life of ALL affected by myositis. Learn more about the research we are involved in, the impact it can have, and how you can get involved.
Watch recordings of our expert-led myositis educational videos to learn more about the various types of myositis and other myositis-related topics and patient opportunities. New videos just added!
We have put together a list of trusted resources for COVID-19. Be sure to stay tuned to your local and state public health office for details in your area.
IndeeLift Delivers!
Steve Powell, founder/CEO of IndeeLift was contacted by patients with inclusion body myositis to adapt the residential machine to their needs. After trialing with several patients, IndeeLift is now delivering. The machine now lifts to 30″, to a standing position. And IndeeLift is offering the HFL-400-FTS exclusively to members of MSU at a discount with each purchase generating funds for myositis research! Special thanks to Jerry King for the video. Follow IB Myositis on YouTube!
Myositis News and Updates
MSU is hosting the first FDA Listening Session on Adult Dermatomyositis on April 26, 2022. We hope the FDA will come away with an appreciation that clinical trial development for DM is not a “one size fits all” approach and better understand the diversity and unique lived experience of DM patients.
Plasma Services Group (PSG) provides an update on what your samples are being used for and how important it is for myositis patients to consider giving blood or plasma for myositis research, and being compensated.
AllStripes was honored to host this webinar with the Myositis Support and Understanding Association to discuss our current and future Dermatomyositis (DM) and Inclusion Body Myositis (IBM) research! Watch to learn more about how you can be a part of the research, from home.
Upcoming Myositis Events
Myositis Support Gets Moving on Clubhouse
January 27 @ 1:00 pm - 2:30 pm EST#MyositisLIFE: IBM Patient Video Support
January 28 @ 5:00 pm - 7:00 pm EST#MyositisLIFE: Necrotizing Myopathy Patient Video Support
January 29 @ 7:00 pm - 9:00 pm EST#MyositisLIFE: Weekly Sunday Clubhouse Support
January 30 @ 7:00 pm - 9:30 pm EST#MyositisLIFE: Wednesday Evening Myositis Patient Video Support
February 2 @ 7:00 pm - 9:00 pm EST
Myositis Support & Understanding and AllStripes are partnering to create a database that will enable new Dermatomyositis research projects!
We’re looking for patients/families willing to contribute their de-identified medical records to make this effort as strong as possible. See more details and enroll if you are interested in being a part of this medical research, from home.
Are you living with myositis?
There are many empowering opportunities for myositis patients. Get involved, advocate and educate, and be a part of traditional and unique patient-focused medical research, and more!
Myositis patients, here are some opportunities:
Like and Follow Myositis Support and Understanding (MSU)
on our social networks to engage with the myositis community.
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