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.”
Mission Completed!
That’s a Wrap on the 2026 Myositis Moon Walk! 🌕🚶♂️
What an incredible journey it has been. We are officially at the finish line, and we couldn’t be more thrilled to announce that this year’s event was a huge success!
To our dedicated walkers, virtual participants, and advocates: your energy and commitment to raising awareness for the myositis community have been nothing short of inspiring. Together, we’re moving closer to a world with better treatments and, ultimately, a cure.
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.
👏 This event simply wouldn’t be possible without the unwavering support of our partners. A special thank you to Argenx, Abcurro, IV Solutions RX, Priovant, Dermatomyositis.com, and Novartis. Thank you for standing with us and for your dedication to the patients we serve.
You can still donate to the Mission:
🌕 Jessica’s Lunar Legion – Lighting up the dark!
Link to Donate: https://secure.givelively.org/teams/myositis/myositis-moon-walk-2026/jessica-s-lunar-legion-illuminating-hope
🚀 Benita Rocket City Allstars – Bringing the hometown heat!
Link to Donate: https://secure.givelively.org/teams/myositis/myositis-moon-walk-2026/benita-s-rocket-city-all-stars-lighting-the-way-for-myositis-awareness
🛰️ Jason Orbital Ops – Precision and passion for the cause!
Link to Donate: https://secure.givelively.org/teams/myositis/myositis-moon-walk-2026/jason-s-orbital-ops-making-impact-at-warp-speed
📹 Stay tuned for more updates! In the meantime, here’s a nice overview from our friends at Fox 54 in Huntsville. https://youtu.be/UtHOYBG1SsU?si=h8z4ZxBx_9cP4eF4
May Webinars: Check out Events Calendar
Pain Webinar This Thursday, May 7
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
Wednesday Evening Myositis Support Group
May 6 @ 7:00 pm - 9:00 pm ESTMyositis Support Gets Moving on Clubhouse
May 7 @ 1:00 pm - 2:30 pm ESTPain as an under recognized symptom of Myositis
May 7 @ 4:00 pm - 5:00 pm EDTWeekly Sunday Clubhouse Support
May 10 @ 7:00 pm - 9:00 pm ESTYoung Adults with Myositis – MSU YA Collective Power Hour
May 11 @ 7:00 pm - 8:00 pm ESTBreathe Easy: Myositis Lung Support Monthly Virtual Support Group
May 12 @ 7:00 pm - 9:00 pm ESTCouch Critics – A Movie Club for the Myositis Community on Clubhouse
May 13 @ 3:00 pm - 4:00 pm ESTDermatomyositis: Research, Real Life & the Lived Experience of Patients of Color
May 13 @ 7:00 pm - 8:00 pm EDTMyositis Support Gets Moving on Clubhouse
May 14 @ 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
