Myositis Patient and Care Partner Support
Join the Myositis Support Community
Free, anonymous, 24/7 support, just for the Myositis Community
Myositis patients and care partners can connect with others who understand what they are going through by joining our support community via the Inspire iOS app or by visiting the Myositis Support Community via your browser.
Ready to Join?
- Start by clicking one of the buttons below to access the Myositis Support Community on Inspire.
- When you get to Inspire, click on the button “Join This Community”
- Follow the instructions and register yourself using email or social networking.
- Once completed, you will receive a confirmation email.
That’s it! Now you are ready to start SHARING and CONNECTING!
Learn about our 'from the Heart' support sessions, on Zoom and Clubhouse
Everything at MSU begins with love and understanding. We started our Zoom support groups in 2016 and since we have expanded and adapted our groups to your needs. As patients and care partners ourselves, we know how valuable support is for all who are impacted by myositis. See the current support and activity sessions we provide, and be sure to register as a member and join an online support group to be notified when we host pop-up sessions.
Myositis Support Clubhouse sessions
Join our Clubhouse Club, Myositis Support, for weekly support rooms, and for pop-up discussions, as well as for our newest program, Myositis Support Gets Moving!
Clubhouse is a free audio-only social media app. Our Club, Myositis Support, is members-only, myositis patients and care partners, to ensure we provide the safest space for you to share and connect. Join the Club and be notified of upcoming rooms.
Myositis Support Gets Moving
Weekly – Every Thursday at 1 PM ET / 12 PM CT /11 AM MT / 10 AM PT
If you are living with myositis, or you are a caregiver or care partner, join our new Club, Myositis Support for this and all rooms.
Research shows that movement/exercise is beneficial for those living with myositis, no matter which type. And, we need proper protein intake to help build/maintain muscle. In this group, which is NOT an exercise group, we create our own individual movement and protein intake plans, utilize support partners and join together every Thursday on Clubhouse to discuss successes, struggles, and barriers. Open to ALL who are living with Myositis, no matter where you are in your progression. Let’s Get Moving any way we can, together.
Learn more about Gets Moving and how the group came to be by reading Preventing frailty: What Myositis Patients CAN Do by Mary Lewis.
Weekly Sunday Myositis Community Support Clubhouse Room
Every Sunday at 7 PM ET / 6 CT / 5 MT / 4 PT
If you are living with myositis, or you are a caregiver or care partner, join our Club, Myositis Support. to be a part of our Sunday evening support groups. We share about our lives with myositis, the challenges and struggles, and the wins and triumphs. You are never required to speak or share. You can join and listen if that is what’s most comfortable for you. This is an intimate room just for people impacted by myositis, and we invite you to join us.
Mindfulness Discussions with MSU, every other Wednesday, on Clubhouse
1 PM ET / 12 CT / 11 AM MT / 10 PT
As we all know here at MSU, living with myositis isn’t easy. We understand, empathize, and relate to our journeys together and support each other the best we can.
As a part of this supportive community, we want to introduce the practice of mindfulness. Mindfulness can truly help you find balance and peace, and strengthen your connection to the self.
We hope that you can join us for the upcoming clubhouse events around mindfulness where Angelic Ingram will hold discussions on the various practices within mindfulness including short meditations and breathwork exercises. Learn what mindfulness is and how it can help you through your journey!
Monthly Men with Myositis Clubhouse Support Room
First Monday of the month at 7 PM ET / 6 CT / 5 MT / 4 PT
Men with Myositis is a monthly group on Clubhouse. It’s a safe space for men to discuss their lives with myositis, and to discuss more private topics they may not feel comfortable sharing in our mixed-gender groups.
This is held at the same time as the Women with Myositis Zoom support group.
Monthly LGBTQIA+ Myositis Support on Clubhouse
Third Tuesday of the month at 7 PM ET / 6 CT / 5 MT / 4 PT
This is a safe space on Clubhouse for people who identify as LGBTQIA, and allies. Join for support, love, and understanding. You can join to listen or to be a part of the discussion.
Myositis Reads, a book club on Clubhouse
Third Mondays at 3 PM ET / 2 CT / 1 MT / 12 PT
Join us on Clubhouse for Myositis Reads, a book club for those living with myositis, and care partners, hosted by Mary Oltmans and Kambiz (Kam) Roghanchi.
We will vote as a group on books to consider. Your ideas are encouraged. Kam and Mary will lead the first book discussion. Each month we will encourage two more readers to join us in leading the group.
TIPS: Call your local library to see if they have the book, used book websites have great prices, and we will talk about reading buddies If that’s something needed!
MSU Zoom Support and Activity Sessions
Our Zoom support sessions are private and never recorded. For security purposes, registration is required once for each of the sessions. See individual event dates on the events calendar page. Event times are shown in Eastern Time. Convert to your timezone at https://www.thetimezoneconverter.com.
You do not have to turn your camera on, and you are never required to speak. Just sh0wing up and listening and being there to support yourself and others is so helpful. And, a great way to get comfortable and realize we provide a safe environment to discuss your experiences, hopes, challenges, successes, emotional ups and downs, and how you adapt to life with this group of rare diseases, myositis.
For ALL patients, living with any form of myositis
1st Wednesday Evening Monthly Zoom support session
1st Wednesday of each month, 7 PM ET / 6 CT / 5 MT / 4 PT
Join us for our Wednesday Evening session for all who are living with myositis, no matter which type.
3rd Saturday Afternoon Monthly Zoom support session
3rd Saturday of each month, 3 PM ET / 2 CT / 1 MT / 12 PT
Join us for our Saturday Afternoon session for all who are living with myositis, no matter which type.
#MyositisLIFE Zoom Groups
Click the title of the session to register. You will receive an email with the details to join. You only need to register once per session to join monthly.
1st Monday of each month, 7 PM ET / 6 CT / 5 MT / 4 PT
This is a session for ALL women living with myositis of any type.
Last Tuesday of each month, 7 PM ET / 6 CT / 5 MT / 4 PT
A session for Young Adults between ages 18 and 40. For liability, you must be at least 18 years old. This group is for young adults with any form of Myositis.
3rd Wednesday of each month, 7 PM ET / 6 CT / 5 MT / 4 PT
This session is for those living with dermatomyositis (DM), clinically amyopathic dermatomyositis (CADM), polymyositis, and antisynthetase syndrome (ASyS) and is held on the 3rd Wednesday of the month.
Last Friday of each month, 5 PM ET / 4 CT / 3 MT / 2 PT
This session is for those living with inclusion body myositis and is held on the last Friday of the month. Caregivers are also welcome when invited by the person living with inclusion body myositis.
Last Saturday of each month, 7 PM ET / 6 CT / 5 MT / 4 PT
This session is for those living with necrotizing myopathy and is held on the last Saturday of the month.
Disclaimer: Myositis Support and Understanding Association (MSU) is a 501(c)(3) nonprofit organization. MSU does not provide medical and mental health advice or treatment. Information provided by Myositis Support and Understanding is not intended as medical advice and is not a replacement for care from a doctor, therapist, or other healthcare provider. If you have a medical or mental health emergency, call your country’s emergency number immediately; 9-1-1 in the United States.
Facebook Support Groups
We host five closed (private) Facebook groups for myositis; Myositis Support (for everyone, no matter the type of Myositis), Myositis Caregivers, Family Members and Friends, Inclusion Body Myositis Support and Understanding, Necrotizing Autoimmune Myopathy Support and Understanding, and Anti-MDA5 Dermatomyositis Support and Understanding. Learn more about our Facebook groups, where MSU started, and request to join the groups appropriate for you.