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X-WR-CALDESC:Events for Myositis Support and Understanding
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DTSTART;TZID=America/New_York:20240114T190000
DTEND;TZID=America/New_York:20240114T210000
DTSTAMP:20250909T193117Z
CREATED:20240103T201449Z
LAST-MODIFIED:20250909T193117Z
UID:10001566-1705258800-1705266000@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-2/2024-01-14/
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:20240115T150000
DTEND;TZID=America/New_York:20240115T163000
DTSTAMP:20240103T201948Z
CREATED:20240103T201947Z
LAST-MODIFIED:20240103T201948Z
UID:10001195-1705330800-1705336200@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_column_text] \nUpcoming Reads\nTo be Announced Soon! See our 2023 reads below.\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/
LOCATION:Clubhouse
CATEGORIES:Clubhouse
ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240118T130000
DTEND;TZID=America/New_York:20240118T143000
DTSTAMP:20250909T193238Z
CREATED:20240103T201105Z
LAST-MODIFIED:20250909T193238Z
UID:10001420-1705582800-1705588200@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-2-2/2024-01-18/
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:20240121T190000
DTEND;TZID=America/New_York:20240121T210000
DTSTAMP:20250909T193117Z
CREATED:20240103T201449Z
LAST-MODIFIED:20250909T193117Z
UID:10001567-1705863600-1705870800@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-2/2024-01-21/
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:20240125T130000
DTEND;TZID=America/New_York:20240125T143000
DTSTAMP:20250909T193238Z
CREATED:20240103T201105Z
LAST-MODIFIED:20250909T193238Z
UID:10001421-1706187600-1706193000@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-2-2/2024-01-25/
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:20240128T190000
DTEND;TZID=America/New_York:20240128T210000
DTSTAMP:20250909T193117Z
CREATED:20240103T201449Z
LAST-MODIFIED:20250909T193117Z
UID:10001568-1706468400-1706475600@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-2/2024-01-28/
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:20240201T130000
DTEND;TZID=America/New_York:20240201T143000
DTSTAMP:20250909T193238Z
CREATED:20240103T201105Z
LAST-MODIFIED:20250909T193238Z
UID:10001422-1706792400-1706797800@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-2-2/2024-02-01/
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:20240204T190000
DTEND;TZID=America/New_York:20240204T210000
DTSTAMP:20250909T193117Z
CREATED:20240103T201449Z
LAST-MODIFIED:20250909T193117Z
UID:10001569-1707073200-1707080400@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-2/2024-02-04/
LOCATION:Clubhouse
CATEGORIES:Clubhouse
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2024/01/Instagram-Post-Sunday-Myositis-Community-Support-Group-1200-x-630-px.png
ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240205T190000
DTEND;TZID=America/New_York:20240205T210000
DTSTAMP:20260131T221504Z
CREATED:20211219T151428Z
LAST-MODIFIED:20260131T221504Z
UID:10005770-1707159600-1707166800@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/2024-02-05/
LOCATION:Clubhouse
CATEGORIES:Clubhouse
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2021/12/Mens-Group-1200-x-630-px.png
ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240208T130000
DTEND;TZID=America/New_York:20240208T143000
DTSTAMP:20250909T193238Z
CREATED:20240103T201105Z
LAST-MODIFIED:20250909T193238Z
UID:10001423-1707397200-1707402600@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-2-2/2024-02-08/
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:20240211T190000
DTEND;TZID=America/New_York:20240211T210000
DTSTAMP:20250909T193117Z
CREATED:20240103T201449Z
LAST-MODIFIED:20250909T193117Z
UID:10001570-1707678000-1707685200@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-2/2024-02-11/
LOCATION:Clubhouse
CATEGORIES:Clubhouse
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2024/01/Instagram-Post-Sunday-Myositis-Community-Support-Group-1200-x-630-px.png
ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240214T130000
DTEND;TZID=America/New_York:20240214T140000
DTSTAMP:20231215T174928Z
CREATED:20230507T112659Z
LAST-MODIFIED:20231215T174928Z
UID:10001380-1707915600-1707919200@understandingmyositis.org
SUMMARY:Mindfulness Discussions with MSU
DESCRIPTION:[vc_row][vc_column] [vc_column_text] \n2nd Wednesday of the month\n1 PM ET / 12 PM CT / 11 AM MT / 10 AM PT\n[/vc_column_text][vc_empty_space][vc_column_text] \nJoin us for Mindfulness Discussions with MSU!\nAs we all know here at MSU\, living with myositis isn’t easy. We understand\, empathize\, and relate to our journeys together and support each other the best we can. \nAs a part of this supportive community\, we want to introduce the practice of mindfulness. Mindfulness can truly help you find balance and peace\, and strengthen your connection to the self. \nAngelic Ingram\, Holistic Health Practioner and founder of a Mindful Journey to Freedom (expat coach) will lead discussions about mindfulness and related topics and work with the group on activities like meditation\, breathwork\, and others. \nThis session is for myositis patients and care partners. You can join to listen or to share.  \nThis is not a support group. We keep the focus of this room on the topic of mindfulness. \nJoin and learn what mindfulness is and how it might help you through your journey! \nWorking with mindfulness is often a positive experience\, however\, some practices may bring up difficult emotions. As always\, we encourage you to consider working together with a counselor/therapist\, which has many scientifically-backed benefits. [/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/mindfulness-discussions/2024-02-14/
LOCATION:Clubhouse
CATEGORIES:Clubhouse
ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240215T130000
DTEND;TZID=America/New_York:20240215T143000
DTSTAMP:20250909T193238Z
CREATED:20240103T201105Z
LAST-MODIFIED:20250909T193238Z
UID:10001424-1708002000-1708007400@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-2-2/2024-02-15/
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:20240218T190000
DTEND;TZID=America/New_York:20240218T210000
DTSTAMP:20250909T193117Z
CREATED:20240103T201449Z
LAST-MODIFIED:20250909T193117Z
UID:10001571-1708282800-1708290000@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-2/2024-02-18/
LOCATION:Clubhouse
CATEGORIES:Clubhouse
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2024/01/Instagram-Post-Sunday-Myositis-Community-Support-Group-1200-x-630-px.png
ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240219T150000
DTEND;TZID=America/New_York:20240219T163000
DTSTAMP:20250909T193352Z
CREATED:20240117T151829Z
LAST-MODIFIED:20250909T193352Z
UID:10001196-1708354800-1708360200@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-2-2-2/2024-02-19/
LOCATION:Clubhouse
CATEGORIES:Clubhouse
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2024/01/Myositis-Reads-Event-Graphic-1200-x-630-px-1.png
ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240222T130000
DTEND;TZID=America/New_York:20240222T143000
DTSTAMP:20250909T193238Z
CREATED:20240103T201105Z
LAST-MODIFIED:20250909T193238Z
UID:10001425-1708606800-1708612200@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-2-2/2024-02-22/
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:20240225T190000
DTEND;TZID=America/New_York:20240225T210000
DTSTAMP:20250909T193117Z
CREATED:20240103T201449Z
LAST-MODIFIED:20250909T193117Z
UID:10001572-1708887600-1708894800@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-2/2024-02-25/
LOCATION:Clubhouse
CATEGORIES:Clubhouse
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2024/01/Instagram-Post-Sunday-Myositis-Community-Support-Group-1200-x-630-px.png
ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240229T130000
DTEND;TZID=America/New_York:20240229T143000
DTSTAMP:20250909T193238Z
CREATED:20240103T201105Z
LAST-MODIFIED:20250909T193238Z
UID:10001426-1709211600-1709217000@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-2-2/2024-02-29/
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:20240303T190000
DTEND;TZID=America/New_York:20240303T210000
DTSTAMP:20250909T193117Z
CREATED:20240103T201449Z
LAST-MODIFIED:20250909T193117Z
UID:10001573-1709492400-1709499600@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-2/2024-03-03/
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:20240304T190000
DTEND;TZID=America/New_York:20240304T210000
DTSTAMP:20260131T221504Z
CREATED:20211219T151428Z
LAST-MODIFIED:20260131T221504Z
UID:10005771-1709578800-1709586000@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/2024-03-04/
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:20240307T130000
DTEND;TZID=America/New_York:20240307T143000
DTSTAMP:20250909T193238Z
CREATED:20240103T201105Z
LAST-MODIFIED:20250909T193238Z
UID:10001427-1709816400-1709821800@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-2-2/2024-03-07/
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:20240310T190000
DTEND;TZID=America/New_York:20240310T210000
DTSTAMP:20250909T193117Z
CREATED:20240103T201449Z
LAST-MODIFIED:20250909T193117Z
UID:10001574-1710097200-1710104400@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-2/2024-03-10/
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:20240314T130000
DTEND;TZID=America/New_York:20240314T143000
DTSTAMP:20250909T193238Z
CREATED:20240103T201105Z
LAST-MODIFIED:20250909T193238Z
UID:10001428-1710421200-1710426600@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-2-2/2024-03-14/
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:20240317T190000
DTEND;TZID=America/New_York:20240317T210000
DTSTAMP:20250909T193117Z
CREATED:20240103T201449Z
LAST-MODIFIED:20250909T193117Z
UID:10001575-1710702000-1710709200@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-2/2024-03-17/
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:20240318T150000
DTEND;TZID=America/New_York:20240318T163000
DTSTAMP:20250909T193352Z
CREATED:20240117T151829Z
LAST-MODIFIED:20250909T193352Z
UID:10001197-1710774000-1710779400@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-2-2-2/2024-03-18/
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:20240321T130000
DTEND;TZID=America/New_York:20240321T143000
DTSTAMP:20250909T193238Z
CREATED:20240103T201105Z
LAST-MODIFIED:20250909T193238Z
UID:10001429-1711026000-1711031400@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-2-2/2024-03-21/
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:20240324T190000
DTEND;TZID=America/New_York:20240324T210000
DTSTAMP:20250909T193117Z
CREATED:20240103T201449Z
LAST-MODIFIED:20250909T193117Z
UID:10001576-1711306800-1711314000@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-2/2024-03-24/
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:20240328T130000
DTEND;TZID=America/New_York:20240328T143000
DTSTAMP:20250909T193238Z
CREATED:20240103T201105Z
LAST-MODIFIED:20250909T193238Z
UID:10001430-1711630800-1711636200@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-2-2/2024-03-28/
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:20240331T190000
DTEND;TZID=America/New_York:20240331T210000
DTSTAMP:20250909T193117Z
CREATED:20240103T201449Z
LAST-MODIFIED:20250909T193117Z
UID:10001577-1711911600-1711918800@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-2/2024-03-31/
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:20240401T190000
DTEND;TZID=America/New_York:20240401T210000
DTSTAMP:20260131T221504Z
CREATED:20211219T151428Z
LAST-MODIFIED:20260131T221504Z
UID:10005772-1711998000-1712005200@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/2024-04-01/
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
END:VCALENDAR