Weekly Sunday Clubhouse Support
2024-12-29 19:00 - 21:00, 2025-01-05 19:00 - 21:00, 2025-01-12 19:00 - 21:00, 2025-01-19 19:00 - 21:00, 2025-01-26 19:00 - 21:00, 2025-02-02 19:00 - 21:00, 2025-02-09 19:00 - 21:00, 2025-02-16 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

Wednesday Evening Myositis Support Group
2025-01-01 19:00 - 21:00, 2025-02-05 19:00 - 21:00 | MSU Zoom Video Session, Video session using Zoom
Starting at 7 PM ET
(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 (ASyS), Immune-Mediated Necrotizing Myopathy (IMNM), Inclusion Body Myositis (IBM), 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.
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.

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.

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.

Myositis Support Gets Moving on Clubhouse
2025-01-02 13:00 - 14:30, 2025-01-09 13:00 - 14:30, 2025-01-16 13:00 - 14:30, 2025-01-23 13:00 - 14:30, 2025-01-30 13:00 - 14:30, 2025-02-06 13:00 - 14:30, 2025-02-13 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

Men with Myositis Clubhouse Support Room
2025-01-06 08:00 - 17:00, 2025-02-03 08:00 - 17:00 | 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

Women with Myositis Zoom Support
2025-01-06 19:00 - 21:00, 2025-02-03 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.

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.

Myositis Cancer Support
2025-01-15 19:00 - 20:30 | MSU Zoom Video Session, Video session using Zoom
Starting at 7 PM Eastern time
(6 PM CT, 5 PM MT, 4 PM PT)
Myositis Patients, click the button below to register to attend.
REGISTER Register once to attend the Myositis Cancer Support 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

We are excited to announce a special support group dedicated to Myositis patients who are currently battling cancer or are survivors. This new initiative aims to create a safe and nurturing space where individuals can share their experiences, find comfort in community, and share resources that empower their journey.
This support group will not only focus on the challenges faced by those navigating life with both Myositis and cancer, but also foster connections that uplift and inspire.
Your journey matters, and we believe that together we can cultivate resilience, strength, and hope. Whether you’re seeking advice, encouragement, or simply a listening ear, this group is here for you.
Please mark your calendars and join us in building a supportive community where every voice is valued.
Together, we can embrace the path ahead with courage and compassion.

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 within the first hour.

International Myositis Virtual Support Group
2025-01-18 14:00 - 16:00, 2025-02-15 14:00 - 16:00 | MSU Zoom Video Session, Video session using Zoom
Starting at 2 PM Eastern time
(1 PM CT, 12 PM MT, 11 AM PT)
Myositis Patients, click the button below to register to attend.
REGISTER TO ATTEND Register once to attend the International Saturday Patient Support 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

International Myositis Virtual Support Group for all Myositis patients and their care partners, held on Zoom. This is a fantastic opportunity to connect with others from around the world, share experiences, and offer mutual support in a safe and welcoming environment.
When: Every third Saturday of the month
Time: 2:00 PM ET (Eastern Time, USA) 1:00 PM CT (Central Time, USA) 12:00 PM MT (Mountain Time, USA) 11:00 AM PT (Pacific Time, USA) 7:00 PM BST (British Summer Time, UK) 8:00 PM CEST (Central European Summer Time)
Whether you are newly diagnosed or have been managing Myositis for years, this group is here to provide community, resources, and understanding. We look forward to seeing you there!
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 (ASyS), Immune-Mediated Necrotizing Myopathy (IMNM), Inclusion Body Myositis (IBM), 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.
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.

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.

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.

Myositis Reads - A Book Club for Those with Myositis
2025-01-20 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

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

Your Health, Your Voice: Building a Lifesaving Medical Binder
2025-01-22 14:00 - 15:30 | MSU Zoom Video Session, Video session using Zoom
Join Us for an Empowering Webinar: “Your Health, Your Voice: Building a Lifesaving Medical Binder” with the Three Myositis Musketeers!
We are excited to invite you to an essential webinar hosted by Myositis Support and Understanding (MSU). Meet the team: Jessica Taylor, Director of Operations and a dedicated myositis patient; Benita Moyer, Vice President, committed advocate, and myositis patient; and Jason Hopauf, Community Support Coordinator and fellow myositis patient. This dynamic team, fondly known as the “Three Myositis Musketeers,” will guide you through the vital process of preparing for medical appointments and emergencies.
Date: Wednesday, January 22nd
Time: 2 PM ET / 1 PM CT / 12 PM MT / 11 AM PT
During this session, we’ll introduce you to MSU’s innovative downloadable PDF medical binder. This customizable binder is designed to empower myositis patients to take charge of their health information. By filling out and printing this binder, patients can ensure that they, and their advocates, have immediate access to critical medical details when they are most needed.
Key Takeaways:

Learn how to prepare effectively for medical appointments and emergencies.
Discover the benefits of having a comprehensive medical binder.
Understand how to use the MSU’s downloadable PDF to create a personalized and portable health resource.
Gain tips on how to communicate effectively with your medical team and advocate.

Don’t miss this opportunity to enhance your medical preparedness and advocacy skills. Together, let’s make sure your health is always in good hands.
To register for the webinar, please click the link below
We look forward to seeing you there!

To Register

Necrotizing Myopathy Patient Video Support
2025-01-25 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.

Shifting Your Mindset
2025-01-28 18:00 - 19:00 | MSU Zoom Video Session, Video session using Zoom
4th Tuesday Of The Month
Starting Tuesday, September 24 & Ending March 25th, 2025
(December will be on the 17th instead of the 24th)
6 PM ET / 5 PM CT / 4 PM MT / 3 PM PT

Living Fully with Myositis: MSU’s #MyositisLife Initiative Series Presents: Our New 7-Part Series: Shifting Your Mindset!
We are excited to announce our empowering Shifting Your Mindset series, designed specifically for those living with Myositis. Over the next seven months, we will embark on a transformative journey together!
✨ Discover Your Inherent Value: Society often places expectations that can make those with chronic illnesses feel “less than.” This series encourages you to embrace your unique experience with Myositis, shifting from feelings of inadequacy to owning your worth.
Cultivate Compassion: Learn to build a more compassionate relationship with your illness, yourself, and your body. We’ll explore how to listen to what your body needs and nurture yourself through moments of uncertainty.
️ Gain Practical Tools: Move beyond fear, despair, and self-judgment. You’ll leave each session equipped with practices that guide you toward acceptance and presence, empowering you to embrace how your body shows up each day.
Format: The first half of each session will feature a recorded presentation (recorded on speaker view with profile pictures hidden to protect anonymity). The latter half will open up to discussion, providing a safe space for sharing and connection.
Join us on this journey of self-discovery and empowerment from September to March. Together, we will shift our mindsets and foster a supportive community where we can thrive! Register to Join on Zoom See Support Options See Upcoming Events

IBM Patient Virtual Support Group
2025-01-31 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.

Meet MSU's New Executive Director - Elisa Glass
2025-02-17 14:00 - 15:00 | MSU Zoom Video Session, Video session using Zoom
Join us on February 17th for a special introduction to our first-ever Executive Director, Elisa Glass!
Get to know Elisa and hear about her vision for the future of Myositis Support and Understanding (MSU). This is a fantastic opportunity for our community to connect and share ideas.
Date: February 17, 2025
Time: 11 AM PT / 12 PM MT / 1 PM CT/ 2 PM ET
Don’t miss this chance to welcome Elisa into our MSU family and engage in meaningful discussions about advancing our mission. Whether you’re local or joining us from across the globe, your presence and voice matter!
Mark your calendar and join us, by registering below, for an inspiring session! Let’s make this a memorable event together.
#MeetElisa #MSU #MyositisCommunity #MyositisSupport #WelcomeElisa Register To Attend
