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X-WR-CALNAME:Myositis Support and Understanding
X-ORIGINAL-URL:https://understandingmyositis.org
X-WR-CALDESC:Events for Myositis Support and Understanding
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DTSTART;TZID=America/New_York:20250504T190000
DTEND;TZID=America/New_York:20250504T210000
DTSTAMP:20250909T193117Z
CREATED:20240103T201449Z
LAST-MODIFIED:20250909T193117Z
UID:10001634-1746385200-1746392400@understandingmyositis.org
SUMMARY:Weekly Sunday Clubhouse Support
DESCRIPTION:[vc_row][vc_column] [vc_column_text] \n#MyositisLIFE: Myositis Community Support\nOn Clubhouse\n[/vc_column_text][vc_column_text] \nEvery Sunday\n7 PM ET / 6 PM CT / 5 PM MT / 4 PM PT\n[/vc_column_text][vc_empty_space][vc_column_text css=””] \nJoin Myositis Support on Clubhouse\nJoin 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. \nClubhouse 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.[/vc_column_text][vc_column_text] \nNew to Clubhouse? \nHere are some quick steps on how to join Clubhouse\, a free\, audio-only app. \nThere are several ways you can get on Clubhouse. Below is just one.  \n\nClick here to join the Myositis Support club. This will open a window where you can click to get the app.\nOr\, visit the app store for your device and search for and install “Clubhouse.”\nOpen the app and create your profile. Photos are encouraged\, and having something in your bio is helpful.\nOnce 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.\nWhen you join us in a Clubhouse session\, you can listen or share. We welcome the entire Myositis Community!\n\nClick to visit the Clubhouse New User Guide[/vc_column_text][vc_column_text] \nUsing Clubhouse on your computer/laptop\nThere 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.[/vc_column_text][vc_empty_space] Join Myositis Support on Clubhouse See All Support Options[vc_row_inner][vc_column_inner][/vc_column_inner][/vc_row_inner][/vc_column][/vc_row][vc_row text_align=”center” text_color=”#fcfcfc” type=”color” bg_color=”#032643″ padding_top=”20″ padding_bottom=”20″][vc_column][vc_row_inner][vc_column_inner][vc_custom_heading text=”Upcoming support and education sessions” font_container=”tag:h3|text_align:center” use_theme_fonts=”yes”]See Upcoming Events[/vc_column_inner][/vc_row_inner][/vc_column][/vc_row]
URL:https://understandingmyositis.org/event/myositislife-clubhouse-support-room-2/2025-05-04/
LOCATION:Clubhouse
CATEGORIES:Clubhouse
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2024/01/Instagram-Post-Sunday-Myositis-Community-Support-Group-1200-x-630-px.png
ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250505T190000
DTEND;TZID=America/New_York:20250505T210000
DTSTAMP:20260131T221504Z
CREATED:20211219T151428Z
LAST-MODIFIED:20260131T221504Z
UID:10005785-1746471600-1746478800@understandingmyositis.org
SUMMARY:Men with Myositis Clubhouse Support Room
DESCRIPTION:[vc_row][vc_column] [vc_column_text] \n#MyositisLIFE: Men with Myositis Clubhouse Support Room\nOn Clubhouse\n[/vc_column_text][vc_column_text] \nFirst Monday of the Month\n7 PM ET / 6 PM CT / 5 PM MT / 4 PM PT\n[/vc_column_text][vc_empty_space][vc_column_text] \nMen with Myositis on Clubhouse\nA 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.  \nAll of our Clubhouse support rooms are members only to provide the safest space possible.[/vc_column_text][vc_column_text] \nDownload Clubhouse from your mobile app store\nClubhouse is available for smartphones and some tablets\, including the iPad. \nVisit your app store and search for Clubhouse: \n\n install the app\ncreate your free account with your mobile number\nadd something to your bio (this is how other people can find you)\nJoin the Myositis Support Club\n\nUsing Clubhouse on your computer/laptop\nThere 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.[/vc_column_text][vc_empty_space] Join Myositis Support on Clubhouse See All Support Options[vc_row_inner][vc_column_inner][/vc_column_inner][/vc_row_inner][/vc_column][/vc_row][vc_row text_align=”center” text_color=”#fcfcfc” type=”color” bg_color=”#032643″ padding_top=”20″ padding_bottom=”20″][vc_column][vc_row_inner][vc_column_inner][vc_custom_heading text=”Upcoming support and education sessions” font_container=”tag:h3|text_align:center” use_theme_fonts=”yes”]See Upcoming Events[/vc_column_inner][/vc_row_inner][/vc_column][/vc_row]
URL:https://understandingmyositis.org/event/ch-mens-group/2025-05-05/
LOCATION:Clubhouse
CATEGORIES:Clubhouse
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2021/12/Mens-Group-1200-x-630-px.png
ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250507T190000
DTEND;TZID=America/New_York:20250507T210000
DTSTAMP:20250910T221541Z
CREATED:20240103T200832Z
LAST-MODIFIED:20250910T221541Z
UID:10001913-1746644400-1746651600@understandingmyositis.org
SUMMARY:Wednesday Evening Myositis Support Group
DESCRIPTION:[vc_row el_id=”details” padding_top=”20″ padding_bottom=”20″][vc_column][vc_column_text css=””] \nStarting at 7 PM ET\n(6 PM CT\, 5 PM MT\, 4 PM PT)\nClick the button below to register to attend. \n[/vc_column_text] REGISTER[vc_message style=”square” message_box_color=”warning” icon_type=”fontawesome” icon_fontawesome=”fas fa-star-of-life”]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.[/vc_message][/vc_column][/vc_row][vc_row][vc_column]\n\n    \n                        \n                    \n                        Session Details                    \n                \n                                \n                    \n                        Session Policies                    \n                \n                                \n                    \n                        FAQ                    \n                \n                    \n    \n        \n\n    [vc_column_text css=””]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. \nThis 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. \nRegistration is required. After registration\, you will receive an email with details to join. See the link to register at the top of this page. \nJoin with your camera on or off. Join to be a part of the discussion or listen in. \nCheck out all of our video support sessions\, and other support options. [/vc_column_text]\n\n\n    [vc_column_text css=””] \nSupport Session Guidelines\nWe don’t like to impose rules\, however\, to keep everyone safe please read over the policies below. \nSession Privacy\, Trust\, and Behavior\nTo keep everyone feeling safe\, here is a list of our general\, but important\, policies. \n\nAnything 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.\nWhen sharing\, we ask you to be mindful of time so everyone has a chance to share.\nIf 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.\nAnything 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.\n\nWe will NOT have or provide: \n\nA debate about science;\nA political discussion;\nA conversation about conspiracy theories;\nMedical advice (beyond what is listed as criteria to call your doctor).\n\nWhat we hope this video support session will be: \n\nA safe space to voice your experiences and ask questions among similarly situated people who understand;\nA place to get ideas for staying sane while practicing social distancing\, isolation\, or quarantine;\nA chance to get ideas for staying safe if you must continue participating in the outside world;\nAn opportunity to see that you are not alone.\n\nThe views and opinions of session Hosts\, Co-hosts\, and Volunteers are not that of Myositis Support and Understanding (MSU). [/vc_column_text]\n\n\n    [vc_column_text] \nHow do I join video support sessions?\nZoom is available for almost all devices including computers\, laptops\, smartphones\, and tablets. \nTo install Zoom on a computer/laptop: Visit the Downloads page on Zoom’s website and download/install the Zoom Client for Meetings. \nTo install Zoom on a device: Visit your App store and search for Zoom and install. \nThen\, visit our Events Calendar and register for the monthly support sessions that interest you. \nIf you need additional help\, we have Zoom help documents with more detail. \nWhy do I have to register?\nBecause 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.[/vc_column_text]\n\n			\n\n[/vc_column][/vc_row][vc_row padding_top=”0″ padding_bottom=”0″][vc_column][vc_message style=”square” icon_type=”fontawesome” icon_fontawesome=”fas fa-exclamation”]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.[/vc_message][/vc_column][/vc_row]
URL:https://understandingmyositis.org/event/myositis-patient-video-support-2/2025-05-07/
LOCATION:MSU Zoom Video Session\, Video session using Zoom
CATEGORIES:Video Support Sessions
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2024/01/MSU-Wednesday-Evening-Support-Event-IG-1200-x-630-px-4.png
ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250511T190000
DTEND;TZID=America/New_York:20250511T210000
DTSTAMP:20250909T193117Z
CREATED:20240103T201449Z
LAST-MODIFIED:20250909T193117Z
UID:10001635-1746990000-1746997200@understandingmyositis.org
SUMMARY:Weekly Sunday Clubhouse Support
DESCRIPTION:[vc_row][vc_column] [vc_column_text] \n#MyositisLIFE: Myositis Community Support\nOn Clubhouse\n[/vc_column_text][vc_column_text] \nEvery Sunday\n7 PM ET / 6 PM CT / 5 PM MT / 4 PM PT\n[/vc_column_text][vc_empty_space][vc_column_text css=””] \nJoin Myositis Support on Clubhouse\nJoin 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. \nClubhouse 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.[/vc_column_text][vc_column_text] \nNew to Clubhouse? \nHere are some quick steps on how to join Clubhouse\, a free\, audio-only app. \nThere are several ways you can get on Clubhouse. Below is just one.  \n\nClick here to join the Myositis Support club. This will open a window where you can click to get the app.\nOr\, visit the app store for your device and search for and install “Clubhouse.”\nOpen the app and create your profile. Photos are encouraged\, and having something in your bio is helpful.\nOnce 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.\nWhen you join us in a Clubhouse session\, you can listen or share. We welcome the entire Myositis Community!\n\nClick to visit the Clubhouse New User Guide[/vc_column_text][vc_column_text] \nUsing Clubhouse on your computer/laptop\nThere 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.[/vc_column_text][vc_empty_space] Join Myositis Support on Clubhouse See All Support Options[vc_row_inner][vc_column_inner][/vc_column_inner][/vc_row_inner][/vc_column][/vc_row][vc_row text_align=”center” text_color=”#fcfcfc” type=”color” bg_color=”#032643″ padding_top=”20″ padding_bottom=”20″][vc_column][vc_row_inner][vc_column_inner][vc_custom_heading text=”Upcoming support and education sessions” font_container=”tag:h3|text_align:center” use_theme_fonts=”yes”]See Upcoming Events[/vc_column_inner][/vc_row_inner][/vc_column][/vc_row]
URL:https://understandingmyositis.org/event/myositislife-clubhouse-support-room-2/2025-05-11/
LOCATION:Clubhouse
CATEGORIES:Clubhouse
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2024/01/Instagram-Post-Sunday-Myositis-Community-Support-Group-1200-x-630-px.png
ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250517T140000
DTEND;TZID=America/New_York:20250517T160000
DTSTAMP:20250424T211042Z
CREATED:20250424T210923Z
LAST-MODIFIED:20250424T211042Z
UID:10001815-1747490400-1747497600@understandingmyositis.org
SUMMARY:International Myositis Patient Support
DESCRIPTION:[vc_row][vc_column]\n\n	\n \nStarting at 2 PM Eastern time\n(1 PM CT\, 12 PM MT\, 11 AM PT) \nMyositis Patients & Care Partners\, click the button below to register to attend. \n   \n\n    \n                        \n                    \n                        Session Details                    \n                \n                                \n                    \n                        Session Policies                    \n                \n                                \n                    \n                        FAQ                    \n                \n                    \n    \n        \n\n    [vc_column_text css=””] \nSpecial International Support Session: Home & Life Adaptations with Myositis\nWe are excited to invite our community to a unique and interactive session titled “Home & Life Adaptations with Myositis” on Saturday\, May 17th. This special support group aims to bring together individuals living with Myositis to share insights\, strategies\, and practical solutions for navigating daily life. \nWhat to Expect: \nThis session will be a collaborative space where participants can discuss the adaptations they’ve implemented in their homes and lives to make day-to-day activities easier and more manageable. We encourage everyone to share their personal tips and tricks\, whether it’s innovative gadgets they’ve discovered\, ergonomic designs that have transformed their spaces\, or effective methods for managing emotions and maintaining mental well-being. \nDiscussion Topics Will Include: \n\nErgonomic Home Design: What changes have you made to your living space?\nManaging Emotions: How do you cope with the emotional aspects of living with Myositis?\nSupport Networks: Share how building connections has impacted your journey.\nMobility Solutions: What tools or techniques do you use to navigate your home?\nHelpful Gadgets: Are there any devices or accessories that have simplified your daily tasks?\nHousehold Adjustments: What clever modifications have you made to enhance your comfort?\n\nThis is an invaluable opportunity to learn from one another\, discover new ways to enhance your quality of life\, and foster a deeper sense of community. \nDon’t miss out on this chance to share your experiences and gather new ideas that could make a significant difference in your daily life. Together\, we can empower one another and develop creative solutions that work for everyone! \nJoin us and be a part of the dialogue! \nCheck out all of our video support sessions\, and other support options. [/vc_column_text]\n\n\n    Empty section. Edit page to add content here.\n\n\n    [vc_column_text] \nHow do I join video support sessions?\nZoom is available for almost all devices including computers\, laptops\, smartphones\, and tablets. \nTo install Zoom on a computer/laptop: Visit the Downloads page on Zoom’s website and download/install the Zoom Client for Meetings. \nTo install Zoom on a device: Visit your App store and search for Zoom and install. \nThen\, visit our Events Calendar and register for the monthly support sessions that interest you. \nIf you need additional help\, we have Zoom help documents with more detail. \nWhy do I have to register?\nBecause 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.[/vc_column_text]\n\n			\n\n To Register[vc_message style=”square” message_box_color=”warning” icon_type=”fontawesome” icon_fontawesome=”fas fa-asterisk” css=””]Register once to attend the International Saturday Patient Support After you register\, you will receive an email with the details to join. \nRegister again for an updated email from Zoom with the new sessions added and an option to add them to your calendar.[/vc_message][/vc_column][/vc_row][vc_row padding_top=”0″ padding_bottom=”0″][vc_column][vc_message style=”square” icon_type=”fontawesome” icon_fontawesome=”fas fa-exclamation” css=””]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.[/vc_message][/vc_column][/vc_row]
URL:https://understandingmyositis.org/event/international-myositis-video-support-2/
LOCATION:MSU Zoom Video Session\, Video session using Zoom
CATEGORIES:Video Support Sessions
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2024/07/HomeLife-1200-x-630-px-2.png
ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250518T190000
DTEND;TZID=America/New_York:20250518T210000
DTSTAMP:20250909T193117Z
CREATED:20240103T201449Z
LAST-MODIFIED:20250909T193117Z
UID:10001636-1747594800-1747602000@understandingmyositis.org
SUMMARY:Weekly Sunday Clubhouse Support
DESCRIPTION:[vc_row][vc_column] [vc_column_text] \n#MyositisLIFE: Myositis Community Support\nOn Clubhouse\n[/vc_column_text][vc_column_text] \nEvery Sunday\n7 PM ET / 6 PM CT / 5 PM MT / 4 PM PT\n[/vc_column_text][vc_empty_space][vc_column_text css=””] \nJoin Myositis Support on Clubhouse\nJoin 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. \nClubhouse 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.[/vc_column_text][vc_column_text] \nNew to Clubhouse? \nHere are some quick steps on how to join Clubhouse\, a free\, audio-only app. \nThere are several ways you can get on Clubhouse. Below is just one.  \n\nClick here to join the Myositis Support club. This will open a window where you can click to get the app.\nOr\, visit the app store for your device and search for and install “Clubhouse.”\nOpen the app and create your profile. Photos are encouraged\, and having something in your bio is helpful.\nOnce 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.\nWhen you join us in a Clubhouse session\, you can listen or share. We welcome the entire Myositis Community!\n\nClick to visit the Clubhouse New User Guide[/vc_column_text][vc_column_text] \nUsing Clubhouse on your computer/laptop\nThere 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.[/vc_column_text][vc_empty_space] Join Myositis Support on Clubhouse See All Support Options[vc_row_inner][vc_column_inner][/vc_column_inner][/vc_row_inner][/vc_column][/vc_row][vc_row text_align=”center” text_color=”#fcfcfc” type=”color” bg_color=”#032643″ padding_top=”20″ padding_bottom=”20″][vc_column][vc_row_inner][vc_column_inner][vc_custom_heading text=”Upcoming support and education sessions” font_container=”tag:h3|text_align:center” use_theme_fonts=”yes”]See Upcoming Events[/vc_column_inner][/vc_row_inner][/vc_column][/vc_row]
URL:https://understandingmyositis.org/event/myositislife-clubhouse-support-room-2/2025-05-18/
LOCATION:Clubhouse
CATEGORIES:Clubhouse
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2024/01/Instagram-Post-Sunday-Myositis-Community-Support-Group-1200-x-630-px.png
ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250519T150000
DTEND;TZID=America/New_York:20250519T163000
DTSTAMP:20250909T193352Z
CREATED:20240117T151829Z
LAST-MODIFIED:20250909T193352Z
UID:10001901-1747666800-1747672200@understandingmyositis.org
SUMMARY:Myositis Reads - A Book Club for Those with Myositis
DESCRIPTION:[vc_row][vc_column] [vc_column_text] \nMyositis Reads with MSU\nA bookclub for those living with Myositis on Clubhouse\nCare Partners are also welcome.\n[/vc_column_text][vc_column_text] \nEvery 3rd Monday\n3 PM ET / 2 PM CT / 1 PM MT / 12 PM PT\n[/vc_column_text][vc_empty_space][vc_column_text] \nJoin us for Myositis Reads!\nJoin 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. \nTIPS 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![/vc_column_text][vc_column_text] \nHow do I join?\nTo 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. \nOnce 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.[/vc_column_text][vc_column_text] \nNew to Clubhouse? \nHere are some quick steps on how to join Clubhouse\, a free\, audio-only app. \nThere are several ways you can get on Clubhouse. Below is just one.  \n\nClick here to join the Myositis Support club. This will open a window where you can click to get the app.\nOr\, visit the app store for your device and search for and install “Clubhouse.”\nOpen the app and create your profile. Photos are encouraged\, and having something in your bio is helpful.\nOnce 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.\nWhen you join us in a Clubhouse session\, you can listen or share. We welcome the entire Myositis Community!\n\nClick to visit the Clubhouse New User Guide[/vc_column_text][vc_column_text] \nUsing Clubhouse on your computer/laptop\nThere 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.[/vc_column_text][vc_empty_space] Join Myositis Support on Clubhouse See Support Options[vc_row_inner][vc_column_inner][/vc_column_inner][/vc_row_inner][/vc_column][/vc_row][vc_row text_align=”center” text_color=”#fcfcfc” type=”color” bg_color=”#032643″ padding_top=”20″ padding_bottom=”20″][vc_column][vc_row_inner][vc_column_inner][vc_custom_heading text=”Upcoming support and education sessions” font_container=”tag:h3|text_align:center” use_theme_fonts=”yes”]See Upcoming Events[/vc_column_inner][/vc_row_inner][/vc_column][/vc_row]
URL:https://understandingmyositis.org/event/myositis-reads-2-2-2/2025-05-19/
LOCATION:Clubhouse
CATEGORIES:Clubhouse
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2024/01/Myositis-Reads-Event-Graphic-1200-x-630-px-1.png
ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250520T160000
DTEND;TZID=America/New_York:20250520T173000
DTSTAMP:20250510T210050Z
CREATED:20250510T210050Z
LAST-MODIFIED:20250510T210050Z
UID:10002426-1747756800-1747762200@understandingmyositis.org
SUMMARY:What Brings You Joy?
DESCRIPTION:[vc_row][vc_column]\n\n	\n \nTuesday\, May 20th \n4 PM ET / 3 PM CT / 2 PM MT / 1 PM PT \n   [vc_custom_heading text=”What Brings You Joy?” font_container=”tag:h2|text_align:center|color:%232A416E” css=””][vc_column_text css=””]Join us for a heartfelt support session in celebration of Myositis Awareness Month. Hosted by acclaimed author Lisa Sniderman of The Grieving Project and Jessica Taylor\, Director of Volunteer & Support Operations for MSU\, this event marks the third year of this inspiring support group experience. \nThis year’s theme reminds us that your story matters\, and that you are the hero of your own journey. During this special session\, we’ll explore how joy can illuminate even the toughest moments and empower you to take control of your narrative. Through insightful conversations and interactive activities\, you’ll discover ways to find happiness and hope\, no matter where you are on your path. \nWhether you’re seeking to reignite your sense of purpose\, connect with others\, or simply celebrate the small moments of joy\, this supportive environment is here for you. \n✨ Remember\, your story matters. Be the hero of your own story — and let’s celebrate the joy that fuels your journey! ✨ \n#MyMyoStoryMatters #BeTheHero #JoyInEveryDay #MyositisAwareness #SupportAndHealing #CommunityEvent[/vc_column_text] To Register[/vc_column][/vc_row]
URL:https://understandingmyositis.org/event/what-brings-you-joy-2/
LOCATION:MSU Zoom Video Session\, Video session using Zoom
CATEGORIES:Video Session
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2025/05/What-Brings-You-Joy-1200-x-630-px-1.png
ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250525T190000
DTEND;TZID=America/New_York:20250525T210000
DTSTAMP:20250909T193117Z
CREATED:20240103T201449Z
LAST-MODIFIED:20250909T193117Z
UID:10001637-1748199600-1748206800@understandingmyositis.org
SUMMARY:Weekly Sunday Clubhouse Support
DESCRIPTION:[vc_row][vc_column] [vc_column_text] \n#MyositisLIFE: Myositis Community Support\nOn Clubhouse\n[/vc_column_text][vc_column_text] \nEvery Sunday\n7 PM ET / 6 PM CT / 5 PM MT / 4 PM PT\n[/vc_column_text][vc_empty_space][vc_column_text css=””] \nJoin Myositis Support on Clubhouse\nJoin 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. \nClubhouse 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.[/vc_column_text][vc_column_text] \nNew to Clubhouse? \nHere are some quick steps on how to join Clubhouse\, a free\, audio-only app. \nThere are several ways you can get on Clubhouse. Below is just one.  \n\nClick here to join the Myositis Support club. This will open a window where you can click to get the app.\nOr\, visit the app store for your device and search for and install “Clubhouse.”\nOpen the app and create your profile. Photos are encouraged\, and having something in your bio is helpful.\nOnce 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.\nWhen you join us in a Clubhouse session\, you can listen or share. We welcome the entire Myositis Community!\n\nClick to visit the Clubhouse New User Guide[/vc_column_text][vc_column_text] \nUsing Clubhouse on your computer/laptop\nThere 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.[/vc_column_text][vc_empty_space] Join Myositis Support on Clubhouse See All Support Options[vc_row_inner][vc_column_inner][/vc_column_inner][/vc_row_inner][/vc_column][/vc_row][vc_row text_align=”center” text_color=”#fcfcfc” type=”color” bg_color=”#032643″ padding_top=”20″ padding_bottom=”20″][vc_column][vc_row_inner][vc_column_inner][vc_custom_heading text=”Upcoming support and education sessions” font_container=”tag:h3|text_align:center” use_theme_fonts=”yes”]See Upcoming Events[/vc_column_inner][/vc_row_inner][/vc_column][/vc_row]
URL:https://understandingmyositis.org/event/myositislife-clubhouse-support-room-2/2025-05-25/
LOCATION:Clubhouse
CATEGORIES:Clubhouse
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2024/01/Instagram-Post-Sunday-Myositis-Community-Support-Group-1200-x-630-px.png
ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250529T190000
DTEND;TZID=America/New_York:20250529T200000
DTSTAMP:20250424T214356Z
CREATED:20250424T214356Z
LAST-MODIFIED:20250424T214356Z
UID:10002425-1748545200-1748548800@understandingmyositis.org
SUMMARY:Myo Night: Making the Best of My Own Night
DESCRIPTION:[vc_row][vc_column]\n\n	\n \nStarting at 7 PM Eastern time\n(6 PM CT\, 5 PM MT\, 4 PM PT) \nMyositis Patients & Care Partners\, click the button below to register to attend.   [vc_column_text css=””]Join us for Myo Night: Making the Best of My Own Night on May 29th at 7 PM ET\, a special Zoom event to celebrate Myositis Awareness Month and our theme\, “My Myo Story Matters: Be the Hero of Your Own Story.” \nWhat to Expect: \nThis vibrant event invites individuals with Myositis and their loved ones to showcase their passions and talents\, such as poetry\, music\, and arts\, from the comfort of home. \nWhy Participate in Myo Night? \nThis event is all about embracing your power and celebrating the hero within you. It encourages you to make the best of your night\, reinforcing the idea that despite challenges\, you can create meaningful moments. Whether you’re participating solo or inviting friends and family\, it’s an opportunity to share your unique story and celebrate your journey. \nJoin us for a vibrant evening of:\n– Creative showcases\n– Personal storytelling\n– Celebrating resilience and talent \nLet’s close out the month by highlighting the incredible ways you navigate life. Remember\, your story matters\, and we can’t wait to celebrate your journey. Be the hero of your own story and inspire others with your courage and creativity![/vc_column_text] To Register[/vc_column][/vc_row]
URL:https://understandingmyositis.org/event/myo-night-making-the-best-of-my-own-night/
LOCATION:MSU Zoom Video Session\, Video session using Zoom
CATEGORIES:Video Session
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2025/04/MYO-Night-1200-x-630-px.png
ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250530T170000
DTEND;TZID=America/New_York:20250530T190000
DTSTAMP:20250909T181333Z
CREATED:20240117T151337Z
LAST-MODIFIED:20250909T181333Z
UID:10001977-1748624400-1748631600@understandingmyositis.org
SUMMARY:IBM Patient Virtual Support Group
DESCRIPTION:[vc_row el_id=”details” padding_top=”20″ padding_bottom=”20″][vc_column][vc_column_text] \nStarting at 5 PM Eastern time\n(4 PM CT\, 3 PM MT\, 2 PM PT) \nIBM Patients\, click the button below to register to attend. \n[/vc_column_text] REGISTER[vc_message style=”square” message_box_color=”warning” icon_type=”fontawesome” icon_fontawesome=”fas fa-star-of-life” css=””]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. \nRegister again for an updated email from Zoom that contains the dates for 2025 and provides a link to add them to your calendar.[/vc_message][/vc_column][/vc_row][vc_row][vc_column]\n\n    \n                        \n                    \n                        Session Details                    \n                \n                                \n                    \n                        Session Policies                    \n                \n                                \n                    \n                        FAQ                    \n                \n                    \n    \n        \n\n    [vc_column_text css=””]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. \nSupport sessions are never recorded. These are private\, real-time video support sessions and not the educational sessions we provide. \nThis 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. \nWe 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. \nRegistration is required. After registration\, you will receive an email with details to join. See the link to register at the top of this page. \nYou do not have to turn your camera on and you will never be required to speak. \nCheck out all of our video support sessions\, and other support options. [/vc_column_text]\n\n\n    [vc_column_text css=””] \nSupport Session Guidelines\nWe don’t like to impose rules\, however\, to keep everyone safe please read over the policies below. \nSession Privacy\, Trust\, and Behavior\nTo keep everyone feeling safe\, here is a list of our general\, but important\, policies. \n\nAnything 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.\nWhen sharing\, we ask you to be mindful of time so everyone has a chance to share.\nIf 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.\nAnything 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.\n\nWe will NOT have or provide: \n\nA debate about science;\nA political discussion;\nA conversation about conspiracy theories;\nMedical advice (beyond what is listed as criteria to call your doctor).\n\nWhat we hope this video support session will be: \n\nA safe space to voice your experiences and ask questions among similarly situated people who understand;\nA place to get ideas for staying sane while practicing social distancing\, isolation\, or quarantine;\nA chance to get ideas for staying safe if you must continue participating in the outside world;\nAn opportunity to see that you are not alone.\n\nThe views and opinions of session Hosts\, Co-hosts\, and Volunteers are not that of Myositis Support and Understanding (MSU). [/vc_column_text]\n\n\n    [vc_column_text] \nHow do I join video support sessions?\nZoom is available for almost all devices including computers\, laptops\, smartphones\, and tablets. \nTo install Zoom on a computer/laptop: Visit the Downloads page on Zoom’s website and download/install the Zoom Client for Meetings. \nTo install Zoom on a device: Visit your App store and search for Zoom and install. \nThen\, visit our Events Calendar and register for the monthly support sessions that interest you. \nIf you need additional help\, we have Zoom help documents with more detail. \nWhy do I have to register?\nBecause 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.[/vc_column_text]\n\n			\n\n[/vc_column][/vc_row][vc_row padding_top=”0″ padding_bottom=”0″][vc_column][vc_message style=”square” icon_type=”fontawesome” icon_fontawesome=”fas fa-exclamation” css=””]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.[/vc_message][/vc_column][/vc_row]
URL:https://understandingmyositis.org/event/ibm-patient-video-support-2/2025-05-30/
LOCATION:MSU Zoom Video Session\, Video session using Zoom
CATEGORIES:Video Support Sessions
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2024/01/Inclusion-Body-Myositis-Event-Graphic-1200-x-630-px-2.png
ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250531T190000
DTEND;TZID=America/New_York:20250531T210000
DTSTAMP:20250909T182144Z
CREATED:20240103T204605Z
LAST-MODIFIED:20250909T182144Z
UID:10001989-1748718000-1748725200@understandingmyositis.org
SUMMARY:Necrotizing Myopathy Patient Video Support
DESCRIPTION:[vc_row el_id=”details” padding_top=”20″ padding_bottom=”20″][vc_column][vc_column_text] \nStarting at 7 PM Eastern time\n(6 PM CT\, 5 PM MT\, 4 PM PT) \nIMNM / NAM Patients\, click the button below to register once to attend this and all future sessions. \n[/vc_column_text] REGISTER[/vc_column][/vc_row][vc_row][vc_column]\n\n    \n                        \n                    \n                        Session Details                    \n                \n                                \n                    \n                        Session Policies                    \n                \n                                \n                    \n                        FAQ                    \n                \n                    \n    \n        \n\n    [vc_column_text css=””]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. \nThis session is tailored to those diagnosed with Immune-Mediated Necrotizing Myopathy (IMNM)\, sometimes referred to as Necrotizing Autoimmune Myopathy (NAM). \nRegistration is required. After registration\, you will receive an email with details to join. See the link to register at the top of this page. \nYou do not have to turn your camera on and you will never be required to speak. \nCheck out all of our video support sessions\, and other support options. [/vc_column_text][vc_column_text]Monthly Necrotizing Myopathy session is held on the last Saturday of each month starting at:  \n7 PM Eastern Time \n6 PM Central Time \n5 PM Mountain Time \n4 PM Pacific Time[/vc_column_text]\n\n\n    [vc_column_text css=””] \nSupport Session Guidelines\nWe don’t like to impose rules\, however\, to keep everyone safe please read over the policies below. \nSession Privacy\, Trust\, and Behavior\nTo keep everyone feeling safe\, here is a list of our general\, but important\, policies. \n\nAnything 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.\nWhen sharing\, we ask you to be mindful of time so everyone has a chance to share.\nIf 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.\nAnything 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.\n\nWe will NOT have or provide: \n\nA debate about science;\nA political discussion;\nA conversation about conspiracy theories;\nMedical advice (beyond what is listed as criteria to call your doctor).\n\nWhat we hope this video support session will be: \n\nA safe space to voice your experiences and ask questions among similarly situated people who understand;\nA place to get ideas for staying sane while practicing social distancing\, isolation\, or quarantine;\nA chance to get ideas for staying safe if you must continue participating in the outside world;\nAn opportunity to see that you are not alone.\n\nThe views and opinions of session Hosts\, Co-hosts\, and Volunteers are not that of Myositis Support and Understanding (MSU). [/vc_column_text]\n\n\n    [vc_column_text] \nHow do I join video support sessions?\nZoom is available for almost all devices including computers\, laptops\, smartphones\, and tablets. \nTo install Zoom on a computer/laptop: Visit the Downloads page on Zoom’s website and download/install the Zoom Client for Meetings. \nTo install Zoom on a device: Visit your App store and search for Zoom and install. \nThen\, visit our Events Calendar and register for the monthly support sessions that interest you. \nIf you need additional help\, we have Zoom help documents with more detail. \nWhy do I have to register?\nBecause 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.[/vc_column_text]\n\n			\n\n[/vc_column][/vc_row][vc_row padding_top=”0″ padding_bottom=”0″][vc_column][vc_message style=”square” icon_type=”fontawesome” icon_fontawesome=”fas fa-exclamation” css=””]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.[/vc_message][/vc_column][/vc_row]
URL:https://understandingmyositis.org/event/imnm-video-support-2/2025-05-31/
LOCATION:MSU Zoom Video Session\, Video session using Zoom
CATEGORIES:Video Support Sessions
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2024/01/Necrotizing-Myopathy-Support-Event-Graphic-1200-x-630-px.png
ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org
END:VEVENT
END:VCALENDAR