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.
From Emily Filmore, a founding director of MSU and Board Member Emeritus: “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.”
That’s a Wrap on the 2026 Myositis Moon Walk!
A big thanks to the Three Myositis Musketeers and their volunteer team – the 2026 Moon Walk was a great success. Over $7000 was raised by scooter races alone!
A big thanks to everyone who participated – your energy and commitment to raising awareness for the myositis community has been nothing short of inspiring.
We are grateful for the support of our partners – Argenx, Abcuro, IV Solutions RX, Priovant, Dermatomyositis.com, and Novartis. Thank you for standing with us and for your dedication to the patients we serve.
Don’t go anywhere just yet! Over the next few weeks, we’ll be sharing highlight reels, photo galleries, and stories of impact from the weekend.
Here is a short reel from our wonderful videographer, Wayne Brandenburg….
https://youtu.be/YVM_3XehDrg?si=3oSqqdOKQod4UtxI
Details Coming Soon
PLACING THE PATIENT AT THE HEART OF RESEARCH
Research Directory – Curated by the MSU Right Now Research Team, find the latest information on myositis research and clinical trials, including patient-led research studies worldwide.
‘Right Now’ Research – The home for the patient-led research arm of Myositis Support and Understanding. Learn more about the ‘Right Now’ Research Ecosystem where MSU is transforming patient insights into actionable research and clinical impact.
Myositis Patient Connect powered by Polygon Health – A next-generation platform designed to bring the myositis community together. It empowers patients to share their experiences, connect with others who understand their journey, and access reliable information in one place.
http://myositispatientresearch.org
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.
MSU ‘Right Now’ Research has moved to the Myositis Patient Led Research Hub. Check out how our innovative model is transforming patient insight into actionable research and clinical impact!
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
Men with Myositis Clubhouse Support Room
June 1 @ 7:00 pm - 9:00 pm ESTWomen with Myositis Virtual Support Group
June 1 @ 7:00 pm - 9:00 pm ESTWednesday Evening Myositis Support Group
June 3 @ 7:00 pm - 9:00 pm ESTMyositis Support Gets Moving on Clubhouse
June 4 @ 1:00 pm - 2:30 pm ESTWeekly Sunday Clubhouse Support
June 7 @ 7:00 pm - 9:00 pm ESTYoung Adults with Myositis – MSU YA Collective Power Hour
June 8 @ 7:00 pm - 8:00 pm ESTBreathe Easy: Myositis Lung Support Monthly Virtual Support Group
June 9 @ 7:00 pm - 9:00 pm ESTCouch Critics – A Movie Club for the Myositis Community on Clubhouse
June 10 @ 3:00 pm - 4:00 pm ESTMyositis Support Gets Moving on Clubhouse
June 11 @ 1:00 pm - 2:30 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
