May is Myositis Awareness Month!
It’s the Year of the Tiger: Hear the Myositis Community Roar
Welcome to MSU! We are an all-volunteer, all-virtual, patient-led nonprofit organization with a focus on helping to make an immediate impact in your life as a patient or care partner. We do this by providing “from the heart” support on various platforms, providing “Simply Put” education people can understand, increasing outreach and community-building, patient-centered research initiatives, partnerships with other organizations, industry, and academia, and our signature program, the Myositis patient financial assistance program. You are not alone in your Myositis journey. See more on our Myositis Awareness page.
Register for your FREE MSU Membership to stay updated, get support reminders, and get involved!
Search our site filled with myositis news and updates, education, events, research, and more.
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
We are excited to announce our first publication, “Pain profile and opioid medication use in patients with idiopathic inflammatory myopathies” in Rheumatology and we are proud to be able to offer the full paper at no cost to you
Watch the recording with Alexion Pharmaceuticals to learn about the Flex Study to evaluate the safety and efficacy of an investigational medication on reducing symptoms of adults with Dermatomyositis.
Myositis patients and caregivers are invited to participate in a survey to help us understand how myositis impacts certain aspects of life. The survey will close on May 20, 2022.
Upcoming Myositis Events
#MyositisLIFE: Weekly Sunday Clubhouse Support
May 22 @ 7:00 pm - 9:30 pm EDTThe Power of Our Voice: FDA Listening Session for Adult Dermatomyositis
May 25 @ 3:00 pm - 4:00 pm EDTMyositis Support Gets Moving on Clubhouse
May 26 @ 1:00 pm - 2:30 pm EDTSimple steps to focus on your emotional wellbeing with Lori Wong
May 26 @ 6:00 pm - 8:00 pm EDT#MyositisLIFE: IBM Patient Video Support
May 27 @ 5:00 pm - 7:00 pm EDT
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.
