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 Assitance Program. We cover certain emergency household expenses, medical bills, and mobility and assistive devices. 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.
Living with myositis is hard enough. We are here to help with our Myositis Patient Financial Assitance Program. We cover certain emergency household expenses, medical bills, and mobility and assistive devices. Program is available to U.S. residents. See full details available in our help guide.
We believe in the patient-centered research approach, working together with pharma, biotech, academia, and other unique research solutions to improve the lives of those living with myositis. Learn more about the research we are doing 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
Seeking ten (10) people living with Dermatomyositis who would be willing to share their personal experience in a market research study. Participants that qualify will be asked to complete an online journal exercise for an hour a day, over 3 days (estimated 3 hours total to be completed on your own time on assigned dates). Those who participate in the online portion may be asked to also participate in a 1-hour phone interview. Compensation is provided.
A heartwarming thanks to all 405 members who participated in our survey. This survey was created to help us get a better understanding of your needs and to find ways we can do better. Included is a summary of the key findings and further steps MSU is taking to address these needs.
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.
Upcoming Myositis Events
AllStripes & MSU: You can accelerate drug development in Dermatomyositis!
December 3 @ 3:00 pm - 4:00 pm ESTCannabis and Autoimmune Conditions
December 4 @ 1:00 pm - 2:00 pm EST#MyositisLIFE: Weekly Sunday Clubhouse Support
December 5 @ 7:30 pm - 9:30 pm EST#MyositisLIFE: Women’s Video Support Group
December 6 @ 7:00 pm - 8:30 pm ESTMyositis Support Gets Moving on Clubhouse
December 9 @ 1:00 pm - 2:30 pm EST#MyositisLIFE: Weekly Sunday Clubhouse Support
December 12 @ 7:30 pm - 9:30 pm EST#MyositisLIFE: Parenting with Myositis
December 14 @ 7:00 pm - 9:00 pm EST
Cannabis and Autoimmune Conditions Webinar
Join MSU in welcoming Nurse and Cannabis Health Coach, Christine Lee, BSN, PHN, RN, who was diagnosed with polymyositis in 2013 and an aggressive cancer in 2018. Christine will share her personal and professional experiences with cannabis, including an overview of the endocannabinoid system, basic information about cannabis as medicine, benefits vs risks and information about the different types of strains and administration methods. And, Christine invites your questions! Submit your questions during the Zoom registration.
AllStripes & MSU: You can accelerate drug development in Dermatomyositis!
Are you interested in advancing research for dermatomyositis?
Join us on Friday, December 3rd at 12pm EST for a webinar with AllStripes as we discuss their new dermatomyositis research program!”
Register to join us so you can learn how you can make an impact in myositis research right from home.
The Grieving Project: Creatively Grieving Our Chronic Illnesses Workshop
MSU is honored to host award-winning artist Lisa Sniderman (Aoede), who has struggled with dermatomyositis for more than 13 years while creating to heal, for a second workshop for MSU, using music from her audiobook, The Grieving Project, and other expressive arts (movement, journaling, drawing, poetry) to help us move through grief. Patients and caregivers are welcome. No prior experience required! All attendees who participate will receive a FREE CD of The Grieving Project after the workshop!
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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