WELCOME TO THE MSU FAMILY!
MSU is a patient-centered, volunteer nonprofit organization that leads with love, compassion and a unique understanding of the burdens Myositis brings to patients, care partners and families. In this website you will find all the resources you need to help you navigate the burden this disease places on you and your loved ones:
SUPPORT
because healing isn’t just physical, it’s emotional. It’s finding people who understand and can say, “Me too. You’re not alone.”
EDUCATION
because you deserve to understand your disease as well as your doctors do.
FINANCIAL ASSISTANCE
because MSU wants to help restore what myositis tries to take from you – security, dignity, and hope.
ADVOCACY
because you are not your disease and your voice matters
‘RIGHT NOW’ RESEARCH
because who knows what you need to improve your life better than you?
In 2026 we honor The Power of Community and the impact MSU volunteers, advocates and patient researchers are having on the lives of those affected by myositis. Come join us! Become a part of our family and volunteer here. Consider donating here.
The MSU logo-inspired image was created by Emily Filmore, a founding director of MSUand Board Member Emeritus. Per Emily: “MSU Has my permission to use the image of my MSU logo-inspired painting with credit to me, without restraint. This includes but is not limited to website, promotional items, and sales”
JANUARY EDUCATIONAL WEBINARS
Join us for an informative webinar on the results of the VALOR study, which tested an investigational, once-daily oral medication for adults with dermatomyositis (DM) in the largest DM clinical trial ever conducted. In this 30-minute session, rheumatologist Dr. Iazsmin Ventura (University of Chicago) will review the study findings and what they could mean for patients.
MSU is thrilled to host this education session on Tendon Transfer Surgery for IBM patients – an option that may help improve hand function and independence. Whether you’re a patient, caregiver, or advocate, you will want to hear more from Mass General Brigham hand surgeon, Dr. Abhiram Bhashyam, MD, PhD and learn more about MSU Financial Assistance options to help defray travel expenses.
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!
MSU's Pain Paper
The MSU pain article: “Pain profile and opioid medication use in patients with idiopathic inflammatory myopathies” has been published in the prestigious journal, Rheumatology and MSU is proud to make the paper available to everyone at no cost. Share with your doctors. Myositis Pain is Real!
Myositis News and Updates
Upcoming Myositis Support & Events
Myositis Reads – A Book Club for Those with Myositis
January 19 @ 3:00 pm - 4:30 pm ESTA Potential New Therapy for Dermatomyositis: Learn About the VALOR Study Results from a Leading Physician
January 20 @ 12:00 pm - 1:00 pm ESTMyositis Cancer Support Group
January 21 @ 7:00 pm - 8:30 pm ESTMyositis Support Gets Moving on Clubhouse
January 22 @ 1:00 pm - 2:30 pm ESTTendon Transfer for Inclusion Body Myositis (IBM)
January 23 @ 2:00 pm - 3:00 pm ESTWeekly Sunday Clubhouse Support
January 25 @ 7:00 pm - 9:00 pm ESTCouch Critics – A Movie Club for the Myositis Community
January 28 @ 3:00 pm - 4:00 pm ESTMyositis Support Gets Moving on Clubhouse
January 29 @ 1:00 pm - 2:30 pm ESTInclusion Body Myositis Support Group
January 30 @ 5:00 pm - 7:00 pm EST
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!
Volunteer at MSU
Tell your story – get involved in StateRare Disease Advocacy
Join support groups
Support MSU events
Donate blood and plasma for medical research
Donate to MSU
