BEGIN:VCALENDAR VERSION:2.0 PRODID:-//Myositis Support and Understanding - ECPv6.15.17//NONSGML v1.0//EN CALSCALE:GREGORIAN METHOD:PUBLISH X-WR-CALNAME:Myositis Support and Understanding X-ORIGINAL-URL:https://understandingmyositis.org X-WR-CALDESC:Events for Myositis Support and Understanding REFRESH-INTERVAL;VALUE=DURATION:PT1H X-Robots-Tag:noindex X-PUBLISHED-TTL:PT1H BEGIN:VTIMEZONE TZID:America/New_York BEGIN:DAYLIGHT TZOFFSETFROM:-0500 TZOFFSETTO:-0400 TZNAME:EDT DTSTART:20250309T070000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0400 TZOFFSETTO:-0500 TZNAME:EST DTSTART:20251102T060000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:-0500 TZOFFSETTO:-0400 TZNAME:EDT DTSTART:20260308T070000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0400 TZOFFSETTO:-0500 TZNAME:EST DTSTART:20261101T060000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:-0500 TZOFFSETTO:-0400 TZNAME:EDT DTSTART:20270314T070000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0400 TZOFFSETTO:-0500 TZNAME:EST DTSTART:20271107T060000 END:STANDARD END:VTIMEZONE BEGIN:VEVENT DTSTART;TZID=America/New_York:20260405T190000 DTEND;TZID=America/New_York:20260405T210000 DTSTAMP:20260404T100822 CREATED:20240103T201449Z LAST-MODIFIED:20250909T193117Z UID:10003185-1775415600-1775422800@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-2/2026-04-05/ 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:20260406T190000 DTEND;TZID=America/New_York:20260406T210000 DTSTAMP:20260404T100822 CREATED:20211219T151428Z LAST-MODIFIED:20260131T221504Z UID:10005796-1775502000-1775509200@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/2026-04-06/ 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:20260406T190000 DTEND;TZID=America/New_York:20260406T210000 DTSTAMP:20260404T100822 CREATED:20250909T192658Z LAST-MODIFIED:20260131T214356Z UID:10005701-1775502000-1775509200@understandingmyositis.org SUMMARY:Women with Myositis Virtual Support Group DESCRIPTION:[vc_row][vc_column][vc_message message_box_style=”outline” message_box_color=”orange” icon_fontello=”” css=””] \nFirst Monday of Every Month\nStarting at 7 PM ET / 6 PM CT / 5 PM MT / 4 PM PT\n[/vc_message] REGISTER TO ATTEND[/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 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. \nSupport sessions are never recorded. These are private\, real-time video support sessions and not the educational sessions we provide. \nThis session is open to all women with any type of Myositis. \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 video support session.\nWhen sharing\, we ask you to be mindful of time so that 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 css=””] \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][vc_column][vc_message icon_fontello=”star” 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/women-with-myositis-virtual-support-group/2026-04-06/ LOCATION:MSU Zoom Video Session\, Video session using Zoom CATEGORIES:Video Support Sessions ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2025/09/Womens-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:20260408T150000 DTEND;TZID=America/New_York:20260408T160000 DTSTAMP:20260404T100822 CREATED:20260201T022629Z LAST-MODIFIED:20260203T224613Z UID:10008782-1775660400-1775664000@understandingmyositis.org SUMMARY:Couch Critics - A Movie Club for the Myositis Community on Clubhouse DESCRIPTION:[vc_row][vc_column][vc_message message_box_style=”outline” message_box_color=”black” icon_fontello=”” css=””] \nThe second and fourth Wednesday of each Month!\nOn Clubhouse\n3 PM ET/2 PM CT/1 PM MT/12 PM PT\n[/vc_message][/vc_column][/vc_row][vc_row][vc_column][vc_column_text css=””] \n“Couch Critics” – A Movie Club for the Myositis Community on Clubhouse\nJoin us for a delightful escape into the world of film\, hosted by MSU Virtual Moderators William Robinson and Mary Oltmans. Whether you’re a patient or a care partner\, this movie club is for you!  “Couch Critics” is the perfect place to connect\, unwind\, and enjoy meaningful discussions with fellow movie enthusiasts. Don’t miss out on the fun – grab your popcorn and let’s experience the magic of movies together! 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. \n[/vc_column_text][/vc_column][/vc_row][vc_row][vc_column][vc_column_text css=””]New 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 Couch Critics\, 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 \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. \n   \n[/vc_column_text][/vc_column][/vc_row][vc_row][vc_column]Join Couch Critics on Clubhouse[/vc_column][/vc_row] URL:https://understandingmyositis.org/event/couch-critics-a-movie-club-for-the-myositis-community-2-2/2026-04-08/ LOCATION:Clubhouse CATEGORIES:Video Support Sessions ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2025/09/Couch-Critics-4th-Wed.png ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20260409T130000 DTEND;TZID=America/New_York:20260409T143000 DTSTAMP:20260404T100822 CREATED:20251227T211935Z LAST-MODIFIED:20251227T212411Z UID:10003238-1775739600-1775745000@understandingmyositis.org SUMMARY:Myositis Support Gets Moving on Clubhouse DESCRIPTION:[vc_row][vc_column] [vc_column_text] \nMyositis Support Gets MOVING!\nOn Clubhouse\n[/vc_column_text][vc_column_text] \nEvery Thursday\n1 PM ET / 12 PM CT / 11 AM MT / 10 AM PT\n[/vc_column_text][vc_empty_space height=”15px”] Join Myositis Support on Clubhouse[vc_empty_space][vc_column_text css=””] \nJoin “Myositis Support Gets Moving” on Clubhouse\nWe 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. \nThis 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. \nThis weekly Clubhouse Room IS: \n\na space for encouragement and support as we get moving together;\na space to talk about and create your own individualized movement and protein intake plan;\na space to talk about your successes\, struggles\, and barriers you experience with your plan;\na space to connect and find a support partner\, or find one outside of the group;\na space where NO ONE FAILS!\n\nThis weekly Clubhouse Room is NOT: \n\nan exercise class;\na set program/plan – you create your own;\nmedical or mental health advice.\n\nWhat is Myositis Support Gets Moving?\nWe 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. \nSuggested 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. \nAs 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. \nTo get an accurate assessment of protein intake needs for YOU\, use the protein calculator here. \nAdditionally 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. \nOur 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. \nNote 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. \nDisclaimer: 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.[/vc_column_text][vc_empty_space][vc_column_text] \nPreventing frailty: What Myositis Patients CAN Do\nMary 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. \n[/vc_column_text] Read Preventing frailty: What Myositis Patients CAN Do Protein Calculator[vc_empty_space height=”25px”][vc_column_text] \nAdded Supplement and Nutrition Information\nMagnesium: \n\n10 Evidence-Based Health Benefits of Magnesium\nWhat Does Magnesium Do for Your Body?\n\n[/vc_column_text][vc_empty_space][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 \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/myositis-support-gets-moving-on-clubhouse-2-2-2/2026-04-09/ LOCATION:Clubhouse CATEGORIES:Clubhouse ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2024/01/MYOSITIS-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:20260412T190000 DTEND;TZID=America/New_York:20260412T210000 DTSTAMP:20260404T100822 CREATED:20240103T201449Z LAST-MODIFIED:20250909T193117Z UID:10003186-1776020400-1776027600@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-2/2026-04-12/ 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:20260413T190000 DTEND;TZID=America/New_York:20260413T200000 DTSTAMP:20260404T100822 CREATED:20250909T224353Z LAST-MODIFIED:20260131T030755Z UID:10003377-1776106800-1776110400@understandingmyositis.org SUMMARY:Young Adults with Myositis - MSU YA Collective Power Hour DESCRIPTION:[vc_row][vc_column][vc_message message_box_style=”outline” message_box_color=”orange” icon_fontello=”” css=””] \nThe Second Tuesday of Every Month\n7 PM ET / 6 PM CT / 5 PM MT / 4 PM PT\n[/vc_message] REGISTER TO ATTEND[/vc_column][/vc_row][vc_row][vc_column]\n\n \n \n \n Support Group Details \n \n \n \n Virtual Support Group Policies \n \n \n \n FAQ \n \n \n \n \n\n [vc_column_text css=””] \nMSU Young Adult Collective Power Hour \nJoin fellow young adults living with Myositis for a private\, real-time group video support session. This is a safe\, supportive space to connect with others who understand what it’s like to navigate young adulthood with a chronic illness. Share your experiences\, challenges\, and thoughts—from managing symptoms and medical appointments to balancing work\, school\, and relationships—with a focus on connection and empowerment.  \nSupport sessions are never recorded. These are private\, real-time video support sessions with others like you.  \nThis session is open to all young adults (ages 18–40) living with any form of Myositis.  \nSessions are held on the 2nd Monday of Each Month\n1-Hour Session Only — designed to respect the busy lives of young adults who are working\, raising families\, studying\, or doing it all.  \nRegistration is required. After registering\, you’ll receive an email with the link and details to join. Please see the registration link below.  \nYou are not required to turn on your camera or speak—participate in the way that feels best to you. [/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 css=””] \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][vc_column][vc_message style=”square” icon_fontello=”” 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 within the first hour.[/vc_message][/vc_column][/vc_row] URL:https://understandingmyositis.org/event/young-adults-with-myositis-msu-ya-collective-power-hour-2/2026-04-13/ LOCATION:MSU Zoom Video Session\, Video session using Zoom CATEGORIES:Video Support Sessions ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2025/09/MSU-YA-Adult-FB-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:20260414T190000 DTEND;TZID=America/New_York:20260414T210000 DTSTAMP:20260404T100822 CREATED:20260131T032418Z LAST-MODIFIED:20260201T015047Z UID:10006671-1776193200-1776200400@understandingmyositis.org SUMMARY:Breathe Easy: Myositis Lung Support Monthly Virtual Support Group DESCRIPTION:[vc_row][vc_column][vc_message message_box_color=”orange” icon_fontello=”” css=””] \nSecond Tuesday of the Month\n7 PM ET / 6 PM CT / 5 PM MT / 4 PM PT\n[/vc_message] REGISTER TO ATTEND[/vc_column][/vc_row][vc_row][vc_column]\n\n \n \n \n Group Details \n \n \n \n Virtual Support Group Policy \n \n \n \n FAQ \n \n \n \n \n\n [vc_column_text css=””] \nBreathe Easy: Myositis Lung Support (Monthly Virtual Support Group)\n“Breathe Easy\,” our ongoing support group dedicated to individuals with Myositis experiencing lung issues. Join us every month for a virtual gathering providing connection and support. \nMeeting Details: \n\nWhen:  Second Tuesday of the Month\, 7 PM ET\nWhere: Zoom (register above)\n\nWhat You’ll Experience: This group offers a compassionate space to connect with others who understand the unique challenges of Myositis and lung complications. Share experiences\, gain insights\, and find strategies to manage your lung health while fostering a community of support and understanding. \nDiscussion Topics Include: \n\nLung health\nCoping strategies\nEmotional support\n\nWhether you’re facing daily challenges or seeking guidance\, you’re not alone. Everyone with Myositis and lung issues is encouraged to join. Your voice matters\, and together\, we can support one another in this safe and nurturing environment. \nJoin us to breathe easier and foster a sense of belonging—one meeting at a time.[/vc_column_text]\n\n\n [vc_column_text css=””] \nVirtual Support 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 css=””] \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] URL:https://understandingmyositis.org/event/breathe-easy-myositis-lung-support-monthly-virtual-support-group-2/2026-04-14/ LOCATION:MSU Zoom Video Session\, Video session using Zoom CATEGORIES:Video Support Sessions ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2026/01/Breathe-Easy.png ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20260415T190000 DTEND;TZID=America/New_York:20260415T200000 DTSTAMP:20260404T100822 CREATED:20260302T125055Z LAST-MODIFIED:20260302T125247Z UID:10010427-1776279600-1776283200@understandingmyositis.org SUMMARY:Weight Management Support for Myositis Patients DESCRIPTION:[vc_row][vc_column][vc_message message_box_style=”outline” message_box_color=”black” icon_fontello=”” css=””] \n3rd Wednesday of the Month\n7 PM/ET/ 6 PM CT/5 PM MT/4 PM PT\n[/vc_message][/vc_column][/vc_row][vc_row][vc_column][vc_column_text css=””]Weight loss and weight gain are critical to our physical and emotional wellbeing on our myositis journey and  there is power in sharing our stories in a safe\, no judgement support group.  Our hope is to  cover an array of topics\, so come and join in the conversation and help us shape future sessions. \n  \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 \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. \n[/vc_column_text][/vc_column][/vc_row] URL:https://understandingmyositis.org/event/weight-management-support-for-myositis-patients-4/ LOCATION:Clubhouse CATEGORIES:Clubhouse ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2026/02/Weight-Management.png ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20260416T130000 DTEND;TZID=America/New_York:20260416T143000 DTSTAMP:20260404T100822 CREATED:20251227T211935Z LAST-MODIFIED:20251227T212411Z UID:10003239-1776344400-1776349800@understandingmyositis.org SUMMARY:Myositis Support Gets Moving on Clubhouse DESCRIPTION:[vc_row][vc_column] [vc_column_text] \nMyositis Support Gets MOVING!\nOn Clubhouse\n[/vc_column_text][vc_column_text] \nEvery Thursday\n1 PM ET / 12 PM CT / 11 AM MT / 10 AM PT\n[/vc_column_text][vc_empty_space height=”15px”] Join Myositis Support on Clubhouse[vc_empty_space][vc_column_text css=””] \nJoin “Myositis Support Gets Moving” on Clubhouse\nWe 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. \nThis 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. \nThis weekly Clubhouse Room IS: \n\na space for encouragement and support as we get moving together;\na space to talk about and create your own individualized movement and protein intake plan;\na space to talk about your successes\, struggles\, and barriers you experience with your plan;\na space to connect and find a support partner\, or find one outside of the group;\na space where NO ONE FAILS!\n\nThis weekly Clubhouse Room is NOT: \n\nan exercise class;\na set program/plan – you create your own;\nmedical or mental health advice.\n\nWhat is Myositis Support Gets Moving?\nWe 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. \nSuggested 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. \nAs 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. \nTo get an accurate assessment of protein intake needs for YOU\, use the protein calculator here. \nAdditionally 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. \nOur 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. \nNote 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. \nDisclaimer: 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.[/vc_column_text][vc_empty_space][vc_column_text] \nPreventing frailty: What Myositis Patients CAN Do\nMary 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. \n[/vc_column_text] Read Preventing frailty: What Myositis Patients CAN Do Protein Calculator[vc_empty_space height=”25px”][vc_column_text] \nAdded Supplement and Nutrition Information\nMagnesium: \n\n10 Evidence-Based Health Benefits of Magnesium\nWhat Does Magnesium Do for Your Body?\n\n[/vc_column_text][vc_empty_space][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 \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/myositis-support-gets-moving-on-clubhouse-2-2-2/2026-04-16/ LOCATION:Clubhouse CATEGORIES:Clubhouse ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2024/01/MYOSITIS-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:20260418T140000 DTEND;TZID=America/New_York:20260418T160000 DTSTAMP:20260404T100822 CREATED:20260131T170927Z LAST-MODIFIED:20260131T170928Z UID:10003565-1776520800-1776528000@understandingmyositis.org SUMMARY:International Myositis Support DESCRIPTION:[vc_row][vc_column][vc_message message_box_style=”outline” message_box_color=”orange” icon_fontello=”” css=””] \nStarting at 2 PM Eastern time\n(1 PM CT\, 12 PM MT\, 11 AM PT)\nMyositis Patients\, click the button below to register to attend.\n[/vc_message] REGISTER TO ATTEND[/vc_column][/vc_row][vc_row][vc_column]\n\n \n \n \n Support Group Details \n \n \n \n Virtual Support Group Policies \n \n \n \n FAQ \n \n \n \n \n\n [vc_column_text css=””]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. \nWhen: Every third Saturday of the month \nTime: 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) \nWhether 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! \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 css=””] \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][vc_column][vc_message style=”square” icon_fontello=”attention-alt” 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-support-2/2026-04-18/ LOCATION:MSU Zoom Video Session\, Video session using Zoom CATEGORIES:Video Support Sessions ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2025/09/International-Myositis-Support-Group-Graphic-7.png ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20260419T190000 DTEND;TZID=America/New_York:20260419T210000 DTSTAMP:20260404T100823 CREATED:20240103T201449Z LAST-MODIFIED:20250909T193117Z UID:10003187-1776625200-1776632400@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-2/2026-04-19/ 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:20260420T150000 DTEND;TZID=America/New_York:20260420T163000 DTSTAMP:20260404T100823 CREATED:20240117T151829Z LAST-MODIFIED:20250909T193352Z UID:10003280-1776697200-1776702600@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-2-2-2/2026-04-20/ 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:20260423T130000 DTEND;TZID=America/New_York:20260423T143000 DTSTAMP:20260404T100823 CREATED:20251227T211935Z LAST-MODIFIED:20251227T212411Z UID:10003240-1776949200-1776954600@understandingmyositis.org SUMMARY:Myositis Support Gets Moving on Clubhouse DESCRIPTION:[vc_row][vc_column] [vc_column_text] \nMyositis Support Gets MOVING!\nOn Clubhouse\n[/vc_column_text][vc_column_text] \nEvery Thursday\n1 PM ET / 12 PM CT / 11 AM MT / 10 AM PT\n[/vc_column_text][vc_empty_space height=”15px”] Join Myositis Support on Clubhouse[vc_empty_space][vc_column_text css=””] \nJoin “Myositis Support Gets Moving” on Clubhouse\nWe 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. \nThis 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. \nThis weekly Clubhouse Room IS: \n\na space for encouragement and support as we get moving together;\na space to talk about and create your own individualized movement and protein intake plan;\na space to talk about your successes\, struggles\, and barriers you experience with your plan;\na space to connect and find a support partner\, or find one outside of the group;\na space where NO ONE FAILS!\n\nThis weekly Clubhouse Room is NOT: \n\nan exercise class;\na set program/plan – you create your own;\nmedical or mental health advice.\n\nWhat is Myositis Support Gets Moving?\nWe 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. \nSuggested 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. \nAs 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. \nTo get an accurate assessment of protein intake needs for YOU\, use the protein calculator here. \nAdditionally 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. \nOur 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. \nNote 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. \nDisclaimer: 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.[/vc_column_text][vc_empty_space][vc_column_text] \nPreventing frailty: What Myositis Patients CAN Do\nMary 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. \n[/vc_column_text] Read Preventing frailty: What Myositis Patients CAN Do Protein Calculator[vc_empty_space height=”25px”][vc_column_text] \nAdded Supplement and Nutrition Information\nMagnesium: \n\n10 Evidence-Based Health Benefits of Magnesium\nWhat Does Magnesium Do for Your Body?\n\n[/vc_column_text][vc_empty_space][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 \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/myositis-support-gets-moving-on-clubhouse-2-2-2/2026-04-23/ LOCATION:Clubhouse CATEGORIES:Clubhouse ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2024/01/MYOSITIS-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:20260424T170000 DTEND;TZID=America/New_York:20260424T190000 DTSTAMP:20260404T100823 CREATED:20260308T131539Z LAST-MODIFIED:20260308T133119Z UID:10010790-1777050000-1777057200@understandingmyositis.org SUMMARY:Inclusion Body Myositis (IBM) Support Group DESCRIPTION:[vc_row][vc_column][vc_column_text css=””] \nLast Friday of the Month on Zoom\n5 PM ET/4 PM CT/3 PM MT/2 PM PT\n[/vc_column_text][vc_column_text css=””]Come join our IBM support group that meets the last Friday of each month.  IBM is a slowly progressive and degenerative muscle disease with no available treatment options.  Hosted by patients with IBM\, this is a safe place to talk about how we can live our best lives and support each other.  You are not alone. \nRunning late?  That’s okay.  Join us anyway. Care partners welcome!  Sessions usually run 90 minutes.[/vc_column_text]Register Here[/vc_column][/vc_row] URL:https://understandingmyositis.org/event/inclusion-body-myositis-ibm-support-group/2026-04-24/ LOCATION:MSU Zoom Video Session\, Video session using Zoom CATEGORIES:Video Support Sessions ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2025/09/Inclusion-Body-Myositis-Event-Graphic-1200-x-630-px-3.png ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20260425T190000 DTEND;TZID=America/New_York:20260425T210000 DTSTAMP:20260404T100823 CREATED:20250910T185520Z LAST-MODIFIED:20260131T021845Z UID:10003732-1777143600-1777150800@understandingmyositis.org SUMMARY:Immune-Mediated Necrotizing Myopathy Support Group DESCRIPTION:[vc_row][vc_column][vc_message message_box_style=”outline” message_box_color=”orange” icon_fontello=”” css=””] \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_message] REGISTER TO ATTEND[/vc_column][/vc_row][vc_row][vc_column]\n\n \n \n \n Virtual Support Group Details \n \n \n \n Virtual Support Group 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]\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 css=””] \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][vc_column][vc_message style=”square” icon_fontello=”attention-alt” 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/immune-mediated-necrotizing-myopathy-support-group/2026-04-25/ LOCATION:MSU Zoom Video Session\, Video session using Zoom CATEGORIES:Video Support Sessions ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2025/09/Necrotizing-Myopathy-Support-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:20260426T190000 DTEND;TZID=America/New_York:20260426T210000 DTSTAMP:20260404T100823 CREATED:20240103T201449Z LAST-MODIFIED:20250909T193117Z UID:10003188-1777230000-1777237200@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-2/2026-04-26/ 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:20260428T150000 DTEND;TZID=America/New_York:20260428T160000 DTSTAMP:20260404T100823 CREATED:20260307T230631Z LAST-MODIFIED:20260307T231604Z UID:10010878-1777388400-1777392000@understandingmyositis.org SUMMARY:Finding Our Balance: Navigating Myositis and Dysautonomia DESCRIPTION:[vc_row][vc_column][vc_column_text css=””] \nBi-Monthly on the last Saturday of the Month\n12 PM PST/11 PM MST/2 PM CST/3 PM EST/9 PM CET\n[/vc_column_text][vc_column_text css=””]Are you living with Myositis and also dealing with Dysautonomia or suspect you might be? You’re not alone! It’s common for autoimmune conditions like Myositis to co-occur with Dysautonomia. Join our support group\, offering a safe and nurturing space for individuals managing both conditions. This is an opportunity to share experiences\, find comfort in the community\, and exchange tips and resources for managing symptoms effectively.  \nWhat is Dysautonomia?  \nDysautonomia refers to conditions affecting the autonomic nervous system\, which controls involuntary functions such as heart rate\, blood pressure\, and digestion. Some common subtypes include:   \nPostural Orthostatic Tachycardia Syndrome (POTS)  \nInappropriate Sinus Tachycardia (IST)  \nNeurocardiogenic Syncope (NCS)  \nAutonomic Neuropathy  \nFor more information\, Dysautonomia International is an excellent resource to explore: Dysautonomia International.  \nJoin us to connect\, learn\, and support one another in managing these challenging conditions. [/vc_column_text][/vc_column][/vc_row][vc_row][vc_column]Register Here [/vc_column][/vc_row] URL:https://understandingmyositis.org/event/finding-our-balance-navigating-myositis-and-dysautonomia/2026-04-28/ LOCATION:MSU Zoom Video Session\, Video session using Zoom CATEGORIES:Video Support Sessions ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2025/09/Dysautonomia-Group-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:20260430T130000 DTEND;TZID=America/New_York:20260430T143000 DTSTAMP:20260404T100823 CREATED:20251227T211935Z LAST-MODIFIED:20251227T212411Z UID:10003241-1777554000-1777559400@understandingmyositis.org SUMMARY:Myositis Support Gets Moving on Clubhouse DESCRIPTION:[vc_row][vc_column] [vc_column_text] \nMyositis Support Gets MOVING!\nOn Clubhouse\n[/vc_column_text][vc_column_text] \nEvery Thursday\n1 PM ET / 12 PM CT / 11 AM MT / 10 AM PT\n[/vc_column_text][vc_empty_space height=”15px”] Join Myositis Support on Clubhouse[vc_empty_space][vc_column_text css=””] \nJoin “Myositis Support Gets Moving” on Clubhouse\nWe 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. \nThis 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. \nThis weekly Clubhouse Room IS: \n\na space for encouragement and support as we get moving together;\na space to talk about and create your own individualized movement and protein intake plan;\na space to talk about your successes\, struggles\, and barriers you experience with your plan;\na space to connect and find a support partner\, or find one outside of the group;\na space where NO ONE FAILS!\n\nThis weekly Clubhouse Room is NOT: \n\nan exercise class;\na set program/plan – you create your own;\nmedical or mental health advice.\n\nWhat is Myositis Support Gets Moving?\nWe 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. \nSuggested 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. \nAs 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. \nTo get an accurate assessment of protein intake needs for YOU\, use the protein calculator here. \nAdditionally 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. \nOur 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. \nNote 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. \nDisclaimer: 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.[/vc_column_text][vc_empty_space][vc_column_text] \nPreventing frailty: What Myositis Patients CAN Do\nMary 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. \n[/vc_column_text] Read Preventing frailty: What Myositis Patients CAN Do Protein Calculator[vc_empty_space height=”25px”][vc_column_text] \nAdded Supplement and Nutrition Information\nMagnesium: \n\n10 Evidence-Based Health Benefits of Magnesium\nWhat Does Magnesium Do for Your Body?\n\n[/vc_column_text][vc_empty_space][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 \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/myositis-support-gets-moving-on-clubhouse-2-2-2/2026-04-30/ LOCATION:Clubhouse CATEGORIES:Clubhouse ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2024/01/MYOSITIS-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:20260503T190000 DTEND;TZID=America/New_York:20260503T210000 DTSTAMP:20260404T100823 CREATED:20240103T201449Z LAST-MODIFIED:20250909T193117Z UID:10003189-1777834800-1777842000@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-2/2026-05-03/ 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:20260504T190000 DTEND;TZID=America/New_York:20260504T210000 DTSTAMP:20260404T100823 CREATED:20211219T151428Z LAST-MODIFIED:20260131T221504Z UID:10005797-1777921200-1777928400@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/2026-05-04/ 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:20260504T190000 DTEND;TZID=America/New_York:20260504T210000 DTSTAMP:20260404T100823 CREATED:20250909T192658Z LAST-MODIFIED:20260131T214356Z UID:10005702-1777921200-1777928400@understandingmyositis.org SUMMARY:Women with Myositis Virtual Support Group DESCRIPTION:[vc_row][vc_column][vc_message message_box_style=”outline” message_box_color=”orange” icon_fontello=”” css=””] \nFirst Monday of Every Month\nStarting at 7 PM ET / 6 PM CT / 5 PM MT / 4 PM PT\n[/vc_message] REGISTER TO ATTEND[/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 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. \nSupport sessions are never recorded. These are private\, real-time video support sessions and not the educational sessions we provide. \nThis session is open to all women with any type of Myositis. \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 video support session.\nWhen sharing\, we ask you to be mindful of time so that 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 css=””] \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][vc_column][vc_message icon_fontello=”star” 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/women-with-myositis-virtual-support-group/2026-05-04/ LOCATION:MSU Zoom Video Session\, Video session using Zoom CATEGORIES:Video Support Sessions ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2025/09/Womens-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:20260506T190000 DTEND;TZID=America/New_York:20260506T210000 DTSTAMP:20260404T100823 CREATED:20250909T202720Z LAST-MODIFIED:20260131T031424Z UID:10003321-1778094000-1778101200@understandingmyositis.org SUMMARY:Wednesday Evening Myositis Support Group DESCRIPTION:[vc_row][vc_column][vc_message message_box_style=”outline” message_box_color=”orange” icon_fontello=”” css=””] \n1st Wednesday of Each Month\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_message] REGISTER TO ATTEND[/vc_column][/vc_row][vc_row][vc_column]\n\n \n \n \n Support Group Details \n \n \n \n Virtual Support Group 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 css=””] \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][vc_column][vc_message icon_fontello=”attention-alt” 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 within the first hour.[/vc_message][/vc_column][/vc_row] URL:https://understandingmyositis.org/event/wednesday-evening-myositis-support-group/2026-05-06/ LOCATION:MSU Zoom Video Session\, Video session using Zoom CATEGORIES:Video Support Sessions ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2025/09/MSU-Wednesday-Evening-Support-Event-IG-1200-x-630-px-6.png ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20260507T130000 DTEND;TZID=America/New_York:20260507T143000 DTSTAMP:20260404T100823 CREATED:20251227T211935Z LAST-MODIFIED:20251227T212411Z UID:10003242-1778158800-1778164200@understandingmyositis.org SUMMARY:Myositis Support Gets Moving on Clubhouse DESCRIPTION:[vc_row][vc_column] [vc_column_text] \nMyositis Support Gets MOVING!\nOn Clubhouse\n[/vc_column_text][vc_column_text] \nEvery Thursday\n1 PM ET / 12 PM CT / 11 AM MT / 10 AM PT\n[/vc_column_text][vc_empty_space height=”15px”] Join Myositis Support on Clubhouse[vc_empty_space][vc_column_text css=””] \nJoin “Myositis Support Gets Moving” on Clubhouse\nWe 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. \nThis 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. \nThis weekly Clubhouse Room IS: \n\na space for encouragement and support as we get moving together;\na space to talk about and create your own individualized movement and protein intake plan;\na space to talk about your successes\, struggles\, and barriers you experience with your plan;\na space to connect and find a support partner\, or find one outside of the group;\na space where NO ONE FAILS!\n\nThis weekly Clubhouse Room is NOT: \n\nan exercise class;\na set program/plan – you create your own;\nmedical or mental health advice.\n\nWhat is Myositis Support Gets Moving?\nWe 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. \nSuggested 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. \nAs 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. \nTo get an accurate assessment of protein intake needs for YOU\, use the protein calculator here. \nAdditionally 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. \nOur 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. \nNote 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. \nDisclaimer: 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.[/vc_column_text][vc_empty_space][vc_column_text] \nPreventing frailty: What Myositis Patients CAN Do\nMary 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. \n[/vc_column_text] Read Preventing frailty: What Myositis Patients CAN Do Protein Calculator[vc_empty_space height=”25px”][vc_column_text] \nAdded Supplement and Nutrition Information\nMagnesium: \n\n10 Evidence-Based Health Benefits of Magnesium\nWhat Does Magnesium Do for Your Body?\n\n[/vc_column_text][vc_empty_space][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 \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/myositis-support-gets-moving-on-clubhouse-2-2-2/2026-05-07/ LOCATION:Clubhouse CATEGORIES:Clubhouse ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2024/01/MYOSITIS-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:20260510T190000 DTEND;TZID=America/New_York:20260510T210000 DTSTAMP:20260404T100823 CREATED:20240103T201449Z LAST-MODIFIED:20250909T193117Z UID:10003190-1778439600-1778446800@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-2/2026-05-10/ 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:20260511T190000 DTEND;TZID=America/New_York:20260511T200000 DTSTAMP:20260404T100823 CREATED:20250909T224353Z LAST-MODIFIED:20260131T030755Z UID:10003378-1778526000-1778529600@understandingmyositis.org SUMMARY:Young Adults with Myositis - MSU YA Collective Power Hour DESCRIPTION:[vc_row][vc_column][vc_message message_box_style=”outline” message_box_color=”orange” icon_fontello=”” css=””] \nThe Second Tuesday of Every Month\n7 PM ET / 6 PM CT / 5 PM MT / 4 PM PT\n[/vc_message] REGISTER TO ATTEND[/vc_column][/vc_row][vc_row][vc_column]\n\n \n \n \n Support Group Details \n \n \n \n Virtual Support Group Policies \n \n \n \n FAQ \n \n \n \n \n\n [vc_column_text css=””] \nMSU Young Adult Collective Power Hour \nJoin fellow young adults living with Myositis for a private\, real-time group video support session. This is a safe\, supportive space to connect with others who understand what it’s like to navigate young adulthood with a chronic illness. Share your experiences\, challenges\, and thoughts—from managing symptoms and medical appointments to balancing work\, school\, and relationships—with a focus on connection and empowerment.  \nSupport sessions are never recorded. These are private\, real-time video support sessions with others like you.  \nThis session is open to all young adults (ages 18–40) living with any form of Myositis.  \nSessions are held on the 2nd Monday of Each Month\n1-Hour Session Only — designed to respect the busy lives of young adults who are working\, raising families\, studying\, or doing it all.  \nRegistration is required. After registering\, you’ll receive an email with the link and details to join. Please see the registration link below.  \nYou are not required to turn on your camera or speak—participate in the way that feels best to you. [/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 css=””] \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][vc_column][vc_message style=”square” icon_fontello=”” 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 within the first hour.[/vc_message][/vc_column][/vc_row] URL:https://understandingmyositis.org/event/young-adults-with-myositis-msu-ya-collective-power-hour-2/2026-05-11/ LOCATION:MSU Zoom Video Session\, Video session using Zoom CATEGORIES:Video Support Sessions ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2025/09/MSU-YA-Adult-FB-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:20260512T190000 DTEND;TZID=America/New_York:20260512T210000 DTSTAMP:20260404T100823 CREATED:20260131T032418Z LAST-MODIFIED:20260201T015047Z UID:10006672-1778612400-1778619600@understandingmyositis.org SUMMARY:Breathe Easy: Myositis Lung Support Monthly Virtual Support Group DESCRIPTION:[vc_row][vc_column][vc_message message_box_color=”orange” icon_fontello=”” css=””] \nSecond Tuesday of the Month\n7 PM ET / 6 PM CT / 5 PM MT / 4 PM PT\n[/vc_message] REGISTER TO ATTEND[/vc_column][/vc_row][vc_row][vc_column]\n\n \n \n \n Group Details \n \n \n \n Virtual Support Group Policy \n \n \n \n FAQ \n \n \n \n \n\n [vc_column_text css=””] \nBreathe Easy: Myositis Lung Support (Monthly Virtual Support Group)\n“Breathe Easy\,” our ongoing support group dedicated to individuals with Myositis experiencing lung issues. Join us every month for a virtual gathering providing connection and support. \nMeeting Details: \n\nWhen:  Second Tuesday of the Month\, 7 PM ET\nWhere: Zoom (register above)\n\nWhat You’ll Experience: This group offers a compassionate space to connect with others who understand the unique challenges of Myositis and lung complications. Share experiences\, gain insights\, and find strategies to manage your lung health while fostering a community of support and understanding. \nDiscussion Topics Include: \n\nLung health\nCoping strategies\nEmotional support\n\nWhether you’re facing daily challenges or seeking guidance\, you’re not alone. Everyone with Myositis and lung issues is encouraged to join. Your voice matters\, and together\, we can support one another in this safe and nurturing environment. \nJoin us to breathe easier and foster a sense of belonging—one meeting at a time.[/vc_column_text]\n\n\n [vc_column_text css=””] \nVirtual Support 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 css=””] \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] URL:https://understandingmyositis.org/event/breathe-easy-myositis-lung-support-monthly-virtual-support-group-2/2026-05-12/ LOCATION:MSU Zoom Video Session\, Video session using Zoom CATEGORIES:Video Support Sessions ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2026/01/Breathe-Easy.png ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20260513T150000 DTEND;TZID=America/New_York:20260513T160000 DTSTAMP:20260404T100823 CREATED:20260201T022629Z LAST-MODIFIED:20260203T224613Z UID:10008783-1778684400-1778688000@understandingmyositis.org SUMMARY:Couch Critics - A Movie Club for the Myositis Community on Clubhouse DESCRIPTION:[vc_row][vc_column][vc_message message_box_style=”outline” message_box_color=”black” icon_fontello=”” css=””] \nThe second and fourth Wednesday of each Month!\nOn Clubhouse\n3 PM ET/2 PM CT/1 PM MT/12 PM PT\n[/vc_message][/vc_column][/vc_row][vc_row][vc_column][vc_column_text css=””] \n“Couch Critics” – A Movie Club for the Myositis Community on Clubhouse\nJoin us for a delightful escape into the world of film\, hosted by MSU Virtual Moderators William Robinson and Mary Oltmans. Whether you’re a patient or a care partner\, this movie club is for you!  “Couch Critics” is the perfect place to connect\, unwind\, and enjoy meaningful discussions with fellow movie enthusiasts. Don’t miss out on the fun – grab your popcorn and let’s experience the magic of movies together! 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. \n[/vc_column_text][/vc_column][/vc_row][vc_row][vc_column][vc_column_text css=””]New 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 Couch Critics\, 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 \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. \n   \n[/vc_column_text][/vc_column][/vc_row][vc_row][vc_column]Join Couch Critics on Clubhouse[/vc_column][/vc_row] URL:https://understandingmyositis.org/event/couch-critics-a-movie-club-for-the-myositis-community-2-2/2026-05-13/ LOCATION:Clubhouse CATEGORIES:Video Support Sessions ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2025/09/Couch-Critics-4th-Wed.png ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20260514T130000 DTEND;TZID=America/New_York:20260514T143000 DTSTAMP:20260404T100823 CREATED:20251227T211935Z LAST-MODIFIED:20251227T212411Z UID:10003243-1778763600-1778769000@understandingmyositis.org SUMMARY:Myositis Support Gets Moving on Clubhouse DESCRIPTION:[vc_row][vc_column] [vc_column_text] \nMyositis Support Gets MOVING!\nOn Clubhouse\n[/vc_column_text][vc_column_text] \nEvery Thursday\n1 PM ET / 12 PM CT / 11 AM MT / 10 AM PT\n[/vc_column_text][vc_empty_space height=”15px”] Join Myositis Support on Clubhouse[vc_empty_space][vc_column_text css=””] \nJoin “Myositis Support Gets Moving” on Clubhouse\nWe 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. \nThis 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. \nThis weekly Clubhouse Room IS: \n\na space for encouragement and support as we get moving together;\na space to talk about and create your own individualized movement and protein intake plan;\na space to talk about your successes\, struggles\, and barriers you experience with your plan;\na space to connect and find a support partner\, or find one outside of the group;\na space where NO ONE FAILS!\n\nThis weekly Clubhouse Room is NOT: \n\nan exercise class;\na set program/plan – you create your own;\nmedical or mental health advice.\n\nWhat is Myositis Support Gets Moving?\nWe 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. \nSuggested 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. \nAs 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. \nTo get an accurate assessment of protein intake needs for YOU\, use the protein calculator here. \nAdditionally 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. \nOur 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. \nNote 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. \nDisclaimer: 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.[/vc_column_text][vc_empty_space][vc_column_text] \nPreventing frailty: What Myositis Patients CAN Do\nMary 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. \n[/vc_column_text] Read Preventing frailty: What Myositis Patients CAN Do Protein Calculator[vc_empty_space height=”25px”][vc_column_text] \nAdded Supplement and Nutrition Information\nMagnesium: \n\n10 Evidence-Based Health Benefits of Magnesium\nWhat Does Magnesium Do for Your Body?\n\n[/vc_column_text][vc_empty_space][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 \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/myositis-support-gets-moving-on-clubhouse-2-2-2/2026-05-14/ LOCATION:Clubhouse CATEGORIES:Clubhouse ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2024/01/MYOSITIS-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:20260516T140000 DTEND;TZID=America/New_York:20260516T160000 DTSTAMP:20260404T100823 CREATED:20260131T170927Z LAST-MODIFIED:20260131T170928Z UID:10003566-1778940000-1778947200@understandingmyositis.org SUMMARY:International Myositis Support DESCRIPTION:[vc_row][vc_column][vc_message message_box_style=”outline” message_box_color=”orange” icon_fontello=”” css=””] \nStarting at 2 PM Eastern time\n(1 PM CT\, 12 PM MT\, 11 AM PT)\nMyositis Patients\, click the button below to register to attend.\n[/vc_message] REGISTER TO ATTEND[/vc_column][/vc_row][vc_row][vc_column]\n\n \n \n \n Support Group Details \n \n \n \n Virtual Support Group Policies \n \n \n \n FAQ \n \n \n \n \n\n [vc_column_text css=””]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. \nWhen: Every third Saturday of the month \nTime: 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) \nWhether 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! \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 css=””] \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][vc_column][vc_message style=”square” icon_fontello=”attention-alt” 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-support-2/2026-05-16/ LOCATION:MSU Zoom Video Session\, Video session using Zoom CATEGORIES:Video Support Sessions ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2025/09/International-Myositis-Support-Group-Graphic-7.png ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org END:VEVENT END:VCALENDAR