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X-WR-CALNAME:Myositis Support and Understanding
X-ORIGINAL-URL:https://understandingmyositis.org
X-WR-CALDESC:Events for Myositis Support and Understanding
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DTSTART;TZID=America/New_York:20250518T190000
DTEND;TZID=America/New_York:20250518T210000
DTSTAMP:20250909T193117Z
CREATED:20240103T201449Z
LAST-MODIFIED:20250909T193117Z
UID:10001636-1747594800-1747602000@understandingmyositis.org
SUMMARY:Weekly Sunday Clubhouse Support
DESCRIPTION:[vc_row][vc_column] [vc_column_text] \n#MyositisLIFE: Myositis Community Support\nOn Clubhouse\n[/vc_column_text][vc_column_text] \nEvery Sunday\n7 PM ET / 6 PM CT / 5 PM MT / 4 PM PT\n[/vc_column_text][vc_empty_space][vc_column_text css=””] \nJoin Myositis Support on Clubhouse\nJoin us every Sunday on Clubhouse. All Myositis patients and care partners are welcome. This is a members-only room to provide the safest space possible to share. Join us for support\, love\, and understanding. You can join to listen or to share. \nClubhouse is a free audio-only app. Being audio-only\, it’s a little different\, but we have many members who have joined and love it! We hope you will give it a try. Some describe it as sitting in a living room chatting with family.[/vc_column_text][vc_column_text] \nNew to Clubhouse? \nHere are some quick steps on how to join Clubhouse\, a free\, audio-only app. \nThere are several ways you can get on Clubhouse. Below is just one.  \n\nClick here to join the Myositis Support club. This will open a window where you can click to get the app.\nOr\, visit the app store for your device and search for and install “Clubhouse.”\nOpen the app and create your profile. Photos are encouraged\, and having something in your bio is helpful.\nOnce you join the Myositis Support club\, you will receive notifications in the app when our rooms open. And\, you can also see our schedule of rooms\, be notified of pop-up rooms\, and more.\nWhen you join us in a Clubhouse session\, you can listen or share. We welcome the entire Myositis Community!\n\nClick to visit the Clubhouse New User Guide[/vc_column_text][vc_column_text] \nUsing Clubhouse on your computer/laptop\nThere is third-party software\, Clubdeck\, that you can download and install on your computer to use Clubhouse. Clubdeck is available for Windows and Mac OS. You can only be logged in on one device\, however. So if you use Clubdeck\, you won’t be able to have Clubhouse on your device running at the same time.  Check out Clubdeck here.[/vc_column_text][vc_empty_space] Join Myositis Support on Clubhouse See All Support Options[vc_row_inner][vc_column_inner][/vc_column_inner][/vc_row_inner][/vc_column][/vc_row][vc_row text_align=”center” text_color=”#fcfcfc” type=”color” bg_color=”#032643″ padding_top=”20″ padding_bottom=”20″][vc_column][vc_row_inner][vc_column_inner][vc_custom_heading text=”Upcoming support and education sessions” font_container=”tag:h3|text_align:center” use_theme_fonts=”yes”]See Upcoming Events[/vc_column_inner][/vc_row_inner][/vc_column][/vc_row]
URL:https://understandingmyositis.org/event/myositislife-clubhouse-support-room-2/2025-05-18/
LOCATION:Clubhouse
CATEGORIES:Clubhouse
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2024/01/Instagram-Post-Sunday-Myositis-Community-Support-Group-1200-x-630-px.png
ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250519T130000
DTEND;TZID=America/New_York:20250519T143000
DTSTAMP:20250410T222950Z
CREATED:20250410T222950Z
LAST-MODIFIED:20250410T222950Z
UID:10002058-1747659600-1747665000@understandingmyositis.org
SUMMARY:Care Partner Burnout: Supporting Your Loved One While Taking Care of Yourself
DESCRIPTION:[vc_row][vc_column][vc_column_text css=””] \nMonday\, May 19th \n10 AM PT / 11 AM MT / 12 PM CT / 1 PM ET \nA fatigue-related health condition doesn’t only impact the life of the person who is ill; it often brings significant changes for their loved ones and caregivers as well. Navigating this adjustment can be challenging\, and it can be difficult to know how to best support your loved one while ensuring you also care for yourself.  \nJoin us for our insightful webinar\, “Care Partner Burnout\,” where we will increase your understanding of what life feels like for your loved one living with fatigue-related challenges. In this session\, you will learn how to effectively support them on their recovery journey while also prioritizing your own well-being.  \nWhat You Will Learn:  \n\nInsight into the experiences and emotions faced by those dealing with fatigue-related health conditions. \n\n\nEffective strategies for supporting your loved one without compromising your mental and physical health. \n\n\nPractical tips for managing caregiver burnout and establishing boundaries. \n\n\nThe importance of self-care and its role in sustaining your ability to support others.\n\nDon’t miss this opportunity to gain valuable insights and tools to support both your loved one and yourself. Register now to secure your spot! [/vc_column_text] Register To Attend[vc_row_inner][vc_column_inner width=”1/2″][vc_single_image image=”41855″ img_size=”large” add_caption=”yes” css=”” title=”Guest Speaker Pamela Rose”][/vc_column_inner][vc_column_inner width=”1/2″][vc_column_text css=””]“Based in the UK\, Pamela Rose is a Fatigue Coach supporting people around the world to better manage their fatigue-related challenges. She provides very real and practical guidance to her clients linked to behaviors’ that will start to make a noticeable difference straightaway.  A key part of Pamela’s approach is ‘pacing’ or ‘energy management’ – helping clients achieve the life they have to live and want to live – whilst managing their health journeys.” [/vc_column_text] Pamela Rose Website[/vc_column_inner][/vc_row_inner][/vc_column][/vc_row]
URL:https://understandingmyositis.org/event/care-partner-burnout-supporting-your-loved-one-while-taking-care-of-yourself/
LOCATION:MSU Zoom Video Session\, Video session using Zoom
CATEGORIES:Video Session
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2025/04/Care-Partner-Burnout-1200-x-630-px-3.png
ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org
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DTSTART;TZID=America/New_York:20250522T130000
DTEND;TZID=America/New_York:20250522T143000
DTSTAMP:20250909T193238Z
CREATED:20240103T201105Z
LAST-MODIFIED:20250909T193238Z
UID:10001941-1747918800-1747924200@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-2-2/2025-05-22/
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
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