Myositis Support and Understanding

Weekly Sunday Clubhouse Support
2025-03-23 19:00 - 21:00 (America/New_York) | Clubhouse
#MyositisLIFE: Myositis Community Support
On Clubhouse

Every Sunday
7 PM ET / 6 PM CT / 5 PM MT / 4 PM PT

Join Myositis Support on Clubhouse
Join us every Sunday on Clubhouse. All Myositis patients and care partners are welcome. This is a members-only room to provide the safest space possible to share. Join us for support, love, and understanding. You can join to listen or to share.
Clubhouse is a free audio-only app. Being audio-only, it’s a little different, but we have many members who have joined and love it! We hope you will give it a try. Some describe it as sitting in a living room chatting with family.
New to Clubhouse?
Here are some quick steps on how to join Clubhouse, a free, audio-only app.
There are several ways you can get on Clubhouse. Below is just one.

Click here to join the Myositis Support club. This will open a window where you can click to get the app.
Or, visit the app store for your device and search for and install “Clubhouse.”
Open the app and create your profile. Photos are encouraged, and having something in your bio is helpful.
Once you join the Myositis Support club, you will receive notifications in the app when our rooms open. And, you can also see our schedule of rooms, be notified of pop-up rooms, and more.
When you join us in a Clubhouse session, you can listen or share. We welcome the entire Myositis Community!

Click to visit the Clubhouse New User Guide
Using Clubhouse on your computer/laptop
There is third-party software, Clubdeck, that you can download and install on your computer to use Clubhouse. Clubdeck is available for Windows and Mac OS. You can only be logged in on one device, however. So if you use Clubdeck, you won’t be able to have Clubhouse on your device running at the same time. Check out Clubdeck here. Join Myositis Support on Clubhouse See All Support Options See Upcoming Events

IBM Patient Virtual Support Group
2025-03-28 17:00 - 19:00 | MSU Zoom Video Session, Video session using Zoom
Starting at 5 PM Eastern time
(4 PM CT, 3 PM MT, 2 PM PT)
IBM Patients, click the button below to register to attend.
REGISTER Register once to attend all IBM virtual support sessions. After registration, you will receive an email with the details to join. Be sure to check your junk or spam email folders.
Register again for an updated email from Zoom that contains the dates for 2025 and provides a link to add them to your calendar.

Session Details

Session Policies

FAQ

Join fellow Inclusion Body Myositis patients for a private, real-time group video support session and share your challenges, hopes, fears, circumstances, ask questions and talk to others going through the same or similar situations, including the emotional aspects of myositis life with a focus on gratitude and living our best lives with IBM.
Support sessions are never recorded. These are private, real-time video support sessions and not the educational sessions we provide.
This session is tailored to those diagnosed with or suspected of having Inclusion Body Myositis (IBM). Patients are welcome to include their spouse or care partner in these sessions.
We host this separate video support session because IBM is very different from the other forms of Myositis. IBM is a slowly progressive and degenerative muscle disease with no available treatment options, outside of an exercise program.
Registration is required. After registration, you will receive an email with details to join. See the link to register at the top of this page.
You do not have to turn your camera on and you will never be required to speak.
Check out all of our video support sessions, and other support options.

Support Session Guidelines
We don’t like to impose rules, however, to keep everyone safe please read over the policies below.
Session Privacy, Trust, and Behavior
To keep everyone feeling safe, here is a list of our general, but important, policies.

Anything shared in the video support group session stays there! Just as in our closed online support groups, we trust that you will follow this strict rule. No sharing of private discussions outside of the support session.
When sharing, we ask you to be mindful of time so everyone has a chance to share.
If you have something to add to the discussion, we ask that you do not interrupt while someone is speaking. The hosts will announce at the start of the session how each session will run.
Anything shared should be audience-appropriate. We will not tolerate hate speech, bullying, inappropriate comments, or the promotion of any outside services, products, websites, or other online links that are not related to our discussions.

We will NOT have or provide:

A debate about science;
A political discussion;
A conversation about conspiracy theories;
Medical advice (beyond what is listed as criteria to call your doctor).

What we hope this video support session will be:

A safe space to voice your experiences and ask questions among similarly situated people who understand;
A place to get ideas for staying sane while practicing social distancing, isolation, or quarantine;
A chance to get ideas for staying safe if you must continue participating in the outside world;
An opportunity to see that you are not alone.

The views and opinions of session Hosts, Co-hosts, and Volunteers are not that of Myositis Support and Understanding (MSU).

How do I join video support sessions?
Zoom is available for almost all devices including computers, laptops, smartphones, and tablets.
To install Zoom on a computer/laptop: Visit the Downloads page on Zoom’s website and download/install the Zoom Client for Meetings.
To install Zoom on a device: Visit your App store and search for Zoom and install.
Then, visit our Events Calendar and register for the monthly support sessions that interest you.
If you need additional help, we have Zoom help documents with more detail.
Why do I have to register?
Because of security concerns and to ensure we are able to better provide a safe space and control who joins the sessions we require registration. Register once to attend this monthly session. After registration, you will receive an email with the details to join on Zoom, which also includes a link to add it to your calendar.

Running late? That’s okay. Join us anyway! Video support sessions vary in length and number of attendees but are generally 90 minutes long, so join us anytime.

Necrotizing Myopathy Patient Video Support
2025-03-29 19:00 - 21:00 | MSU Zoom Video Session, Video session using Zoom
Starting at 7 PM Eastern time
(6 PM CT, 5 PM MT, 4 PM PT)
IMNM / NAM Patients, click the button below to register once to attend this and all future sessions.
REGISTER

Session Details

Session Policies

FAQ

Join fellow Immune-Mediated Necrotizing Myopathy patients for a private, real-time group video support session and share your challenges, hopes, fears, circumstances, ask questions and talk to others going through the same or similar situations, including the emotional aspects of Myositis life with a focus on gratitude and living our best lives.
This session is tailored to those diagnosed with Immune-Mediated Necrotizing Myopathy (IMNM), sometimes referred to as Necrotizing Autoimmune Myopathy (NAM).
Registration is required. After registration, you will receive an email with details to join. See the link to register at the top of this page.
You do not have to turn your camera on and you will never be required to speak.
Check out all of our video support sessions, and other support options. Monthly Necrotizing Myopathy session is held on the last Saturday of each month starting at:
7 PM Eastern Time
6 PM Central Time
5 PM Mountain Time
4 PM Pacific Time

Support Session Guidelines
We don’t like to impose rules, however, to keep everyone safe please read over the policies below.
Session Privacy, Trust, and Behavior
To keep everyone feeling safe, here is a list of our general, but important, policies.

Anything shared in the video support group session stays there! Just as in our closed online support groups, we trust that you will follow this strict rule. No sharing of private discussions outside of the support session.
When sharing, we ask you to be mindful of time so everyone has a chance to share.
If you have something to add to the discussion, we ask that you do not interrupt while someone is speaking. The hosts will announce at the start of the session how each session will run.
Anything shared should be audience-appropriate. We will not tolerate hate speech, bullying, inappropriate comments, or the promotion of any outside services, products, websites, or other online links that are not related to our discussions.

We will NOT have or provide:

A debate about science;
A political discussion;
A conversation about conspiracy theories;
Medical advice (beyond what is listed as criteria to call your doctor).

What we hope this video support session will be:

A safe space to voice your experiences and ask questions among similarly situated people who understand;
A place to get ideas for staying sane while practicing social distancing, isolation, or quarantine;
A chance to get ideas for staying safe if you must continue participating in the outside world;
An opportunity to see that you are not alone.

The views and opinions of session Hosts, Co-hosts, and Volunteers are not that of Myositis Support and Understanding (MSU).

How do I join video support sessions?
Zoom is available for almost all devices including computers, laptops, smartphones, and tablets.
To install Zoom on a computer/laptop: Visit the Downloads page on Zoom’s website and download/install the Zoom Client for Meetings.
To install Zoom on a device: Visit your App store and search for Zoom and install.
Then, visit our Events Calendar and register for the monthly support sessions that interest you.
If you need additional help, we have Zoom help documents with more detail.
Why do I have to register?
Because of security concerns and to ensure we are able to better provide a safe space and control who joins the sessions we require registration. Register once to attend this monthly session. After registration, you will receive an email with the details to join on Zoom, which also includes a link to add it to your calendar.

Running late? That’s okay. Join us anyway! Video support sessions vary in length and number of attendees but are generally 90 minutes long, so join us anytime.
