Myositis Support and Understanding

#MyositisLIFE: Weekly Sunday Clubhouse Support
2023-07-09 19:00 - 21:00, 2023-07-02 19:00 - 21:00, 2023-06-25 19:00 - 21:00, 2023-06-18 19:00 - 21:00, 2023-06-11 19:00 - 21:00, 2023-06-04 19:00 - 21:00, 2023-05-28 19:00 - 21:00, 2023-05-21 19:00 - 21:00 (America/New_York) | Clubhouse
#MyositisLIFE: Myositis Community Support room
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

Myositis Support Gets Moving on Clubhouse
2023-07-06 13:00 - 14:30, 2023-06-29 13:00 - 14:30, 2023-06-22 13:00 - 14:30, 2023-06-15 13:00 - 14:30, 2023-06-08 13:00 - 14:30, 2023-06-01 13:00 - 14:30, 2023-05-25 13:00 - 14:30 | Clubhouse
Myositis Support Gets MOVING!
On Clubhouse

Every Thursday
1 PM ET / 12 PM CT / 11 AM MT / 10 AM PT
Join Myositis Support on Clubhouse
Join “Myositis Support Gets Moving” on Clubhouse
We welcome ALL impacted by Myositis who are interested and there are NO REQUIREMENTS to participate in this group, other than genuine interest. AND, perhaps most importantly, it is IMPOSSIBLE TO FAIL in this group. We will learn, grow and progress, together. It is not about competition.
This group is truly for all – at all stages of myositis disease progression. And thus, each participant’s plan must be personally crafted and individualized, and in some cases, that may require the input of a physical therapist.
This weekly Clubhouse Room IS:

a space for encouragement and support as we get moving together;
a space to talk about and create your own individualized movement and protein intake plan;
a space to talk about your successes, struggles, and barriers you experience with your plan;
a space to connect and find a support partner, or find one outside of the group;
a space where NO ONE FAILS!

This weekly Clubhouse Room is NOT:

an exercise class;
a set program/plan – you create your own;
medical or mental health advice.

What is Myositis Support Gets Moving?
We know from research that movement with myositis is beneficial. As part of our Get Moving and #MyositisMovement program, in this weekly Clubhouse room, we will have personalized, self-crafted individual movement goals and will encourage the use of support partners. By support partner, we mean someone each of us chooses to partner up with and engage with weekly (or more frequently) about our progress, successes, and barriers in working our individualized plans. Our support partners become our partners in problem-solving, joyful successes, and sticktoitiveness! We may choose our support partners from someone within our group or someone we already know as a friend.
Suggested personalized plans will focus on increased movement for health/muscle preservation, muscle building, and protein intake goals so that we are eating enough protein to assist in muscle preservation, building, and loss prevention.
As just a single example, a Clubhouse group member recently shared that they utilize their assistive device to do “laps” of walking in their home while participating in groups. This could easily be or be part of an individual increased movement plan.
To get an accurate assessment of protein intake needs for YOU, use the protein calculator here.
Additionally helpful, is that after you get your results, you can scroll down and see lists of good sources of protein foods and other pertinent information. We suggest going with the protein ranges shown by The American Dietetic Association or The Center for Disease Control and Prevention, which you will see listed.
Our group is all about growing in the direction of engaging in increased movement, at an individual level, to preserve and strengthen muscle and function, while keeping a mindful eye on adequate protein intake. These behaviors can help us navigate the long-term effects of Myositis and prevent unnecessary frailty.
Note that as always, in ALL of our groups, we will also be there for each other to offer support for stressors of all kinds that participants may be experiencing in their lives.
Disclaimer: Nothing provided in the group is medical or mental health advice. Safety first. Talk to your doctor and physical and/or occupational therapist about movement that you can safely do at home. If you have a prescribed eating plan through a Registered Dietician, you should follow that plan. And if you have kidney disease, you likely have a specialized eating plan with lower protein and absolutely need to continue with that. Your treating physician’s prescribed advice is the guidance you need to follow.
Preventing frailty: What Myositis Patients CAN Do
Mary Lewis shares her key takeaways from Dr. Conrad Weihl’s presentation, “Navigating the Long Term Effects of Myositis,” specifically on movement/exercise and nutrition for building and preserving muscle mass and preventing loss of muscle mass.
Read Preventing frailty: What Myositis Patients CAN Do Protein Calculator
Added Supplement and Nutrition Information
Magnesium:

10 Evidence-Based Health Benefits of Magnesium
What Does Magnesium Do for Your Body?

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

#MyositisLIFE: Wednesday Evening Myositis Patient Video Support
2023-07-05 19:00 - 21:00, 2023-06-07 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)
Click the button below to register to attend.
REGISTER Register once to attend all monthly Wednesday evening myositis support sessions. After registration, you will receive an email with the details to join. When new sessions are added or changed for some reason, you will receive an email update.

Session Details

Session Policies

FAQ

Join fellow 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 life with myositis.
This session is tailored to anyone living with any of the types of myositis including polymyositis (PM), dermatomyositis (DM), clinically amyopathic dermatomyositis (CADM), antisynthetase syndrome (AS), immune-mediated necrotizing myopathy (IMNM), sporadic inclusion body myositis (sIBM), adults with and parents of children with juvenile dermatomyositis (JDM), nonspecific myositis, and overlapping myositis with other conditions such as with mixed connective tissue disease.
Inclusion body myositis patients are welcome to join this session but please keep in mind that when discussing medications this will not apply to you.
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.
Join with your camera on or off. Join to be a part of the discussion or listen in.
Check out all of our video support sessions, and other support options. Monthly Wednesday session is held on the 1st Wednesday 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 video 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 jokes, or the promotion of any outside services, products, websites, or other online links that are not related to our discussions.

When discussing COVID-19 . . .
When discussing COVID-19, to keep all of our members safe and comfortable, and to protect the integrity of the conversation, we will continue to enforce the rules we put in place below. We will have a no-tolerance policy for these rules and thankfully have not had to use them. We will give one warning and then will ask you to leave the session if you will not comply. We are not equipped to answer the questions about science or conspiracies, and therefore we must ask that they are left at the door.
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 within the first hour.

Women with Myositis Zoom Support
2023-07-03 19:00 - 21:00, 2023-06-05 19:00 - 21:00 | MSU Zoom Video Session, Video session using Zoom
Women’s Group
Starting at 7 PM ET / 6 PM CT / 5 PM MT / 4 PM PT
REGISTER for Future Zoom Sessions
Starting at 7 PM ET / 6 PM CT / 5 PM MT / 4 PM PT
REGISTER TO ATTEND

Session Details

Session Policies

FAQ

Join fellow women with myositis for a private, real-time group video support session and share your challenges, hopes, fears, circumstances, and talk to others going through the same or similar situations, including the emotional aspects of myositis life with a focus on gratitude.
Support sessions are never recorded. These are private, real-time video support sessions and not the educational sessions we provide.
This session is open to all women with any type of myositis.
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 Women with Myositis session is held on the 1st Monday 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 video support session.
When sharing, we ask you to be mindful of time so that 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 jokes, or the promotion of any outside services, products, websites, or other online links that are not related to our discussions.

When discussing COVID-19 . . .
When discussing COVID-19, to keep all of our members safe and comfortable, and to protect the integrity of the conversation, we will continue to enforce the rules we put in place below. We will have a no-tolerance policy for these rules and thankfully have not had to use them. We will give one warning and then will ask you to leave the session if you will not comply. We are not equipped to answer the questions about science or conspiracies, and therefore we must ask that they are left at the door.
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 within the first hour.

Men with Myositis Clubhouse Support Room
2023-07-03 19:00 - 21:00, 2023-06-05 19:00 - 21:00 | Clubhouse
#MyositisLIFE: Men with Myositis Clubhouse Support Room
On Clubhouse

First Monday of the Month
7 PM ET / 6 PM CT / 5 PM MT / 4 PM PT

Men with Myositis on Clubhouse
A safe space for men living with myositis to discuss physical and mental health, barriers, pitfalls, and struggles, and to make meaningful connections. No matter which type of myositis, join us for real-time discussions. You can join and listen, or join and share.
All of our Clubhouse support rooms are members only to provide the safest space possible.
Download Clubhouse from your mobile app store
Clubhouse is available for smartphones and some tablets, including the iPad.
Visit your app store and search for Clubhouse:

install the app
create your free account with your mobile number
add something to your bio (this is how other people can find you)
Join the Myositis Support Club

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. Check out Clubdeck here. Join Myositis Support on Clubhouse See All Support Options See Upcoming Events

#MyositisLIFE: IBM Patient Video Support
2023-06-30 17:00 - 19:00, 2023-05-26 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 2021 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 sporadic inclusion body myositis (sIBM), sometimes referred to as inclusion body myositis (IBM). sIBM patients are welcome to include their spouse or care partner in these sessions.
We host this separate video support session because sIBM is very different from the other forms of myositis. sIBM 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. Monthly Inclusion body myositis session is held on the last Friday of each month starting at:
5 PM Eastern Time
4 PM Central Time
3 PM Mountain Time
2 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.

When discussing COVID-19 . . .
When discussing COVID-19, to keep all of our members safe and comfortable, and to protect the integrity of the conversation, we will continue to enforce the rules we put in place below. We will have a no-tolerance policy for these rules and thankfully have not had to use them. We will give one warning and then will ask you to leave the session if you will not comply. We are not equipped to answer the questions about science or conspiracies, and therefore we must ask that they are left at the door.
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 within the first hour.

#MyositisLIFE: Necrotizing Myopathy Patient Video Support
2023-06-24 19:00 - 21:00, 2023-05-27 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.

When discussing COVID-19 . . .
When discussing COVID-19, to keep all of our members safe and comfortable, and to protect the integrity of the conversation, we will continue to enforce the rules we put in place below. We will have a no-tolerance policy for these rules and thankfully have not had to use them. We will give one warning and then will ask you to leave the session if you will not comply. We are not equipped to answer the questions about science or conspiracies, and therefore we must ask that they are left at the door.
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 within the first hour.

#MyositisLIFE: DM, PM and ASyS Patient Video Support
2023-06-21 19:00 - 21:00 | MSU Zoom Video Session, Video session using Zoom
Third (3rd) Wednesday of the month, starting at 7 PM Eastern time
(6 PM CT, 5 PM MT, 4 PM PT)
Patients, click the button below to register to attend.
REGISTER Register once to attend all monthly DM, PM, and Antisynthetase Syndrome support sessions. After registration, you will receive an email with the details to join. When new sessions are added or changed for some reason, you will receive an email update.

Session Details

Session Policies

FAQ

About this session
Join fellow polymyositis (PM), dermatomyositis (DM), and antisynthetase syndrome (ASyS) patients for private, real-time group video support and share your challenges, hopes, fears, circumstances, and 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 living with polymyositis (PM), dermatomyositis (DM), clinically amyopathic dermatomyositis (CADM), and antisynthetase syndrome (ASyS).
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 have your camera on or speak. Whatever is comfortable for you.
Check out ALL of our video support sessions, and other support options. Monthly DM, PM, ASyS session is held on the 3rd Wednesday 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.

When discussing COVID-19 . . .
When discussing COVID-19, to keep all of our members safe and comfortable, and to protect the integrity of the conversation, we will continue to enforce the rules we put in place below. We will have a no-tolerance policy for these rules and thankfully have not had to use them. We will give one warning and then will ask you to leave the session if you will not comply. We are not equipped to answer the questions about science or conspiracies, and therefore we must ask that they are left at the door.
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 within the first hour.
Did you miss the session with Dr. Graham?
Dr. Lauren Graham joined us for our Myositis Awareness Month session to talk to us about Myositis and the Skin and Dermatomyositis Sun Protection. Click the links to see the videos.

Myositis Reads - A book club for those with myositis
2023-06-19 15:00 - 16:30 | Clubhouse
Myositis Reads with MSU
A bookclub for those living with Myositis on Clubhouse
Care Partners are also welcome.

Every 3rd Monday
3 PM ET / 2 PM CT / 1 PM MT / 12 PM PT

Upcoming Reads
June – Celeste Ng, Our Missing Hearts
July – Fredrick Backman, Anxious People
Aug. – Bonnie Garmus, Lessons in Chemistry
Sept. – Richard Osman, The Man Who Died Twice
Oct. – Tommy Orange, There There
Nov. – Nikki Erlock, The Measure
Dec. – Abraham Verghese, The Covenant of Water

Join us for Myositis Reads!
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. Each month we will read a different book. We will ask for ideas for future reads and have a group vote with those who participate. This is an opportunity to get together with others impacted by myositis to have a little fun and great discussions not centered on our disease.
TIPS to find the book: 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!
How do I join?
To join this and all of our members-only Clubhouse rooms, you must first create your free Clubhouse profile using your mobile/tablet device. See the steps below to download the Clubhouse app and join our Club, Myositis Support.
Once you are a member of our Clubhouse Club you will receive popup notifications from Clubhouse when rooms start, and you can view and join all sessions we have scheduled.
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 Support Options See Upcoming Events

#MyositisLIFE: Saturday Afternoon Myositis Patient Video Support
2023-06-17 15:00 - 17:00 | MSU Zoom Video Session, Video session using Zoom
Starting at 3 PM Eastern time
(2 PM CT, 1 PM MT, 12 PM PT)
Myositis Patients, click the button below to register to attend.
May 2023 session will be held one week early on May 13th!
REGISTER Register once to attend all Monthly Saturday Afternoon sessions. After you register, you will receive an email with the details to join.
Register again for an updated email from Zoom with the new sessions added and an option to add them to your calendar.

Session Details

Session Policies

FAQ

Join fellow 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 life with myositis.
This session is tailored to anyone living with any of the types of myositis including polymyositis (PM), dermatomyositis (DM), clinically amyopathic dermatomyositis (CADM), antisynthetase syndrome (AS), immune-mediated necrotizing myopathy (IMNM), sporadic inclusion body myositis (sIBM), adults with and parents of children with juvenile dermatomyositis (JDM), nonspecific myositis, and overlapping myositis with other conditions such as with mixed connective tissue disease.
Inclusion body myositis patients are welcome to join this session but please keep in mind that when discussing medications this will not apply to you.
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.
Join with your camera on or off. Join to be a part of the discussion or listen in.
Check out all of our video support sessions, and other support options. Monthly Saturday session is held on the 3rd Saturday of each month starting at:
3 PM Eastern Time
2 PM Central Time
1 PM Mountain Time
12 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.

When discussing COVID-19 . . .
When discussing COVID-19, to keep all of our members safe and comfortable, and to protect the integrity of the conversation, we will continue to enforce the rules we put in place below. We will have a no-tolerance policy for these rules and thankfully have not had to use them. We will give one warning and then will ask you to leave the session if you will not comply. We are not equipped to answer the questions about science or conspiracies, and therefore we must ask that they are left at the door.
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 within the first hour.

Mindfulness Discussions with MSU
2023-05-31 13:00 - 14:00 | MSU Zoom Video Session, Video session using Zoom
May 31st on Zoom
1 PM ET / 12 PM CT / 11 AM MT / 10 AM PT
Create Vision Boards

Join us for Mindfulness Discussions with MSU this time on Zoom!
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. In this special session, we will talk about and create vision boards.
Angelic Ingram, Holistic Health Practioner and founder of a Mindful Journey to Freedom (expat coach) will lead discussions about mindfulness and related topics and work with the group on activities like meditation, breathwork, and others.
This session is for myositis patients and care partners. You can join to listen or to share.
This is not a support group. We keep the focus of this room on the topic of mindfulness.
Join and learn what mindfulness is and how it might help you through your journey!
Working with mindfulness is often a positive experience, however, some practices may bring up difficult emotions. As always, we encourage you to consider working together with a counselor/therapist, which has many scientifically-backed benefits. Register on Zoom See Upcoming Events

The Disability Room
2023-05-23 19:00 - 20:30 | MSU Zoom Video Session, Video session using Zoom
The Disability Room

Join us on Zoom!

Join us at Myositis Support and Understanding (MSU) as we explore the life-changing question, “Am I disabled?”
There can be many mixed emotions and thoughts around our disability status. Let’s take a moment to have a conversation as we share and learn together.
We will also discuss the history of the ADA (American Disability Act) in the U.S. and share our thoughts and ideas of what this means to our personal myositis journey.

How to join
Use the button below to register to join this session.
Click to Register on Zoom See Upcoming Events
