Myositis Support and Understanding

Fatigue Management Part 2-Practical Ways To Remove Challenges When Managing Fatigue
2024-08-05 14:00 - 15:30 (America/New_York) | MSU Zoom Video Session, Video session using Zoom
Webinar: Fatigue Management Part 2-Practical Ways To Remove Challenges When Managing Fatigue
Monday, August 5th, on Zoom at 11 AM PT / 12 PM MT / 1 PM CT / 2 PM ET / 7 PM BST / 8 PM CEST
A Living Fully with Myositis: MSU’s #MyositisLife Initiative Series
Join us for Part 2 of our Fatigue Management Series!
Dive into practical solutions to tackle fatigue challenges with our expert speaker, Pamela Rose. Learn effective energy management techniques and discover actionable strategies to conquer fatigue.
In this engaging session, Pamela will cover:
✨ Navigating tricky conversations
✨ Responding thoughtfully rather than reacting
✨ Maintaining a vibrant social life
✨ Mindset adjustments that help you be resourceful every day
Don’t miss this chance to master the skills needed to face daily challenges and live a more energized lifestyle. Your journey to optimized energy and balance starts here! Click to Register on Zoom
About Pamela Rose

“Based in the UK, Pamela Rose is a Fatigue Coach supporting people around the world to better manage their fatigue-related challenges. She provides very real and practical guidance to her clients linked to behaviors that will start to make a noticeable difference straightaway. A key part of Pamela’s approach is ‘pacing’ or ‘energy management’ – helping clients achieve the life they have to live and want to live – whilst managing their health journeys.”
Pamela Rose Contact information info@pamelarose.co.uk or visit her website at https://www.pamelarose.co.uk/

Men with Myositis Clubhouse Support Room
2024-08-05 08:00 - 17:00, 2024-07-01 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

Weekly Sunday Clubhouse Support
2024-08-04 19:00 - 21:00, 2024-07-28 19:00 - 21:00, 2024-07-21 19:00 - 21:00, 2024-07-14 19:00 - 21:00, 2024-07-07 19:00 - 21:00, 2024-06-30 19:00 - 21:00, 2024-06-23 19:00 - 21:00, 2024-06-16 19:00 - 21:00 | 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

Myositis Support Gets Moving on Clubhouse
2024-08-01 13:00 - 14:30, 2024-07-25 13:00 - 14:30, 2024-07-18 13:00 - 14:30, 2024-07-11 13:00 - 14:30, 2024-07-04 13:00 - 14:30, 2024-06-27 13:00 - 14:30, 2024-06-20 13:00 - 14:30, 2024-06-13 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

Necrotizing Myopathy Patient Video Support
2024-07-27 19:00 - 21:00, 2024-06-29 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.

IBM Patient Virtual Support Group
2024-07-26 17:00 - 19:00, 2024-06-28 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.

Fatigue Management - Mastering Fatigue Pacing for a Balanced Life
2024-07-22 14:00 - 15:00 | ZOOM Webinar, 9125 N Old State Rd, Lincoln, DE, 19960, United States
Living Fully with Myositis: MSU’s #MyositisLife Initiative Series Presents – Fatigue Management – Mastering Fatigue Pacing for a Balanced Life
See the details below and register to join us on Zoom

Monday, July 22nd
2 PM ET / 1 PM CT / 12 PM MT / 11 AM PT
7:00 PM BST /8:00 PM CEST
Register to attend

Join us for an exclusive session tailored for myositis patients!
Dive into the crucial topic of fatigue management with our expert speaker, Pamela Rose. Discover the keys to effective energy management and conquer fatigue with practical strategies.
Learn the art of pacing for a balanced and fulfilling life, gaining invaluable insights to boost your well-being. Don’t miss this opportunity to master the skills needed to navigate daily challenges and embrace an energized lifestyle. Your journey to optimized energy and balance starts here!
“Based in the UK, Pamela Rose is a Fatigue Coach supporting people around the world to better manage their fatigue-related challenges. She provides very real and practical guidance to her clients linked to behaviours that will start to make a noticeable difference straightaway. A key part of Pamela’s approach is ‘pacing’ or ‘energy management’ – helping clients achieve the life they have to live and want to live – whilst managing their health journeys.”

About joining this webinar
REGISTRATION IS REQUIRED. Click the Register button above to get started. After registration, you will receive an email containing all information needed to join the webinar at the scheduled time and date.
Be sure to check your spam and junk folders if you do not see the email. 2024/05/21 19:00:00

Get Zoom We use Zoom for all webinars and our video support sessions.
Zoom is available for free and you can download and install the software on your computer or laptop, or use the free app for your smartphone and tablet.
To download the app for your smartphone or tablet, open your app store, search for Zoom, and install.

MSU on YouTube Follow us on YouTube for Live Streaming Events and over 100 videos of past webinars, and to meet our volunteers.

MSU Facebook page Be sure to visit and “Like” our public Facebook page for special events, articles, videos, and patient and caregiver opportunities. See Upcoming Events

International Myositis Virtual Support Group
2024-07-20 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
2024-07-15 15:00 - 16:30, 2024-06-17 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

Wednesday Evening Myositis Support Group
2024-07-03 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.

Women with Myositis Zoom Support
2024-07-01 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.

Saturday Afternoon Myositis Patient Support
2024-06-15 11:00 - 13:00 | MSU Zoom Video Session, Video session using Zoom
Starting at NEW TIME of 2 PM Eastern time
(1 PM CT, 12 PM MT, 11 AM PT)
Myositis Patients, click the button below to register to attend.
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

We are excited to launch a new 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 (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.

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.
