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DTSTART;TZID=America/New_York:20241006T190000
DTEND;TZID=America/New_York:20241006T210000
DTSTAMP:20260416T215527
CREATED:20240103T201449Z
LAST-MODIFIED:20250909T193117Z
UID:10001604-1728241200-1728248400@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-2/2024-10-06/
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:20241003T130000
DTEND;TZID=America/New_York:20241003T143000
DTSTAMP:20260416T215527
CREATED:20240103T201105Z
LAST-MODIFIED:20250909T193238Z
UID:10001457-1727960400-1727965800@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-2-2/2024-10-03/
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:20241002T190000
DTEND;TZID=America/New_York:20241002T210000
DTSTAMP:20260416T215527
CREATED:20240103T200832Z
LAST-MODIFIED:20250910T221541Z
UID:10001731-1727895600-1727902800@understandingmyositis.org
SUMMARY:Wednesday Evening Myositis Support Group
DESCRIPTION:[vc_row el_id=”details” padding_top=”20″ padding_bottom=”20″][vc_column][vc_column_text css=””] \nStarting at 7 PM ET\n(6 PM CT\, 5 PM MT\, 4 PM PT)\nClick the button below to register to attend. \n[/vc_column_text] REGISTER[vc_message style=”square” message_box_color=”warning” icon_type=”fontawesome” icon_fontawesome=”fas fa-star-of-life”]Register once to attend all monthly Wednesday evening myositis support sessions. After registration\, you will receive an email with the details to join. When new sessions are added or changed for some reason\, you will receive an email update.[/vc_message][/vc_column][/vc_row][vc_row][vc_column]\n\n    \n                        \n                    \n                        Session Details                    \n                \n                                \n                    \n                        Session Policies                    \n                \n                                \n                    \n                        FAQ                    \n                \n                    \n    \n        \n\n    [vc_column_text css=””]Join fellow Myositis patients for a private\, real-time group video support session and share your challenges\, hopes\, fears\, circumstances\, ask questions and talk to others going through the same or similar situations\, including the emotional aspects of Myositis life\, with a focus on gratitude and living our best life with Myositis. \nThis session is tailored to anyone living with any of the types of myositis including Polymyositis (PM)\, Dermatomyositis (DM)\, Clinically Amyopathic Dermatomyositis (CADM)\, Antisynthetase Syndrome (ASyS)\, Immune-Mediated Necrotizing Myopathy (IMNM)\, Inclusion Body Myositis (IBM)\, adults with and parents of children with Juvenile Dermatomyositis (JDM)\, Nonspecific Myositis\, and Overlapping Myositis with other conditions such as with Mixed Connective Tissue Disease. \nRegistration is required. After registration\, you will receive an email with details to join. See the link to register at the top of this page. \nJoin with your camera on or off. Join to be a part of the discussion or listen in. \nCheck out all of our video support sessions\, and other support options. [/vc_column_text]\n\n\n    [vc_column_text css=””] \nSupport Session Guidelines\nWe don’t like to impose rules\, however\, to keep everyone safe please read over the policies below. \nSession Privacy\, Trust\, and Behavior\nTo keep everyone feeling safe\, here is a list of our general\, but important\, policies. \n\nAnything shared in the video support group session stays there! Just as in our closed online support groups\, we trust that you will follow this strict rule. No sharing of private discussions outside of the video support session.\nWhen sharing\, we ask you to be mindful of time so everyone has a chance to share.\nIf you have something to add to the discussion\, we ask that you do not interrupt while someone is speaking. The hosts will announce at the start of the session how each session will run.\nAnything shared should be audience-appropriate. We will not tolerate hate speech\, bullying\, inappropriate comments or jokes\, or the promotion of any outside services\, products\, websites\, or other online links that are not related to our discussions.\n\nWe will NOT have or provide: \n\nA debate about science;\nA political discussion;\nA conversation about conspiracy theories;\nMedical advice (beyond what is listed as criteria to call your doctor).\n\nWhat we hope this video support session will be: \n\nA safe space to voice your experiences and ask questions among similarly situated people who understand;\nA place to get ideas for staying sane while practicing social distancing\, isolation\, or quarantine;\nA chance to get ideas for staying safe if you must continue participating in the outside world;\nAn opportunity to see that you are not alone.\n\nThe views and opinions of session Hosts\, Co-hosts\, and Volunteers are not that of Myositis Support and Understanding (MSU). [/vc_column_text]\n\n\n    [vc_column_text] \nHow do I join video support sessions?\nZoom is available for almost all devices including computers\, laptops\, smartphones\, and tablets. \nTo install Zoom on a computer/laptop: Visit the Downloads page on Zoom’s website and download/install the Zoom Client for Meetings. \nTo install Zoom on a device: Visit your App store and search for Zoom and install. \nThen\, visit our Events Calendar and register for the monthly support sessions that interest you. \nIf you need additional help\, we have Zoom help documents with more detail. \nWhy do I have to register?\nBecause of security concerns and to ensure we are able to better provide a safe space and control who joins the sessions we require registration. Register once to attend this monthly session. After registration\, you will receive an email with the details to join on Zoom\, which also includes a link to add it to your calendar.[/vc_column_text]\n\n			\n\n[/vc_column][/vc_row][vc_row padding_top=”0″ padding_bottom=”0″][vc_column][vc_message style=”square” icon_type=”fontawesome” icon_fontawesome=”fas fa-exclamation”]Running late? That’s okay. Join us anyway! Video support sessions vary in length and number of attendees but are generally 90 minutes long\, so join us anytime within the first hour.[/vc_message][/vc_column][/vc_row]
URL:https://understandingmyositis.org/event/myositis-patient-video-support-2/2024-10-02/
LOCATION:MSU Zoom Video Session\, Video session using Zoom
CATEGORIES:Video Support Sessions
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2024/01/MSU-Wednesday-Evening-Support-Event-IG-1200-x-630-px-4.png
ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240930T140000
DTEND;TZID=America/New_York:20240930T150000
DTSTAMP:20260416T215527
CREATED:20240904T200058Z
LAST-MODIFIED:20240905T153827Z
UID:10001870-1727704800-1727708400@understandingmyositis.org
SUMMARY:Realizing the CAR T Potential in Myositis & Beyond
DESCRIPTION:[vc_row][vc_column][vc_column_text css=””]Cabaletta Bio is a clinical-stage biotechnology company focused on developing T cell therapies with potential to provide durable\, perhaps curative\, treatment for patients with autoimmune diseases. CABA-201\, a CD19-CAR T cell therapy\, is being evaluated in the RESET™ Phase 1/2 trials across several autoimmune diseases\, including adult and juvenile myositis. \nTania Gonzalez Rivera\, M.D.\, discusses the application of CAR-T cell therapy in treating myositis and delves into the mechanism of CAR-T therapy\, its successes\, challenges\, and future prospects in revolutionizing autoimmune disease treatment. \nDr. Gonzalez is a renowned physician and executive leader in the biotechnology industry. She currently serves as the Vice President of Medical Affairs at Cabaletta Bio\, a company dedicated to developing novel therapies for autoimmune diseases. Dr. Gonzalez completed her Doctor of Medicine and Residency at the University of Puerto Rico School of Medicine and her Rheumatology Fellowship at the University of Michigan Medical School. \nHer research and clinical expertise include autoimmune diseases\, particularly in the areas of rheumatology and dermatology. She has published numerous papers in peer-reviewed journals on topics such as psoriasis\, and lupus\, and presented research findings at major scientific conferences\, including the American Academy of Dermatology and the American College of Rheumatology.[/vc_column_text][/vc_column][/vc_row][vc_row][vc_column][/vc_column][/vc_row][vc_row][vc_column] REGISTER[/vc_column][/vc_row]
URL:https://understandingmyositis.org/event/realizing-the-car-t-potential-in-myositis-and-beyond/
LOCATION:ZOOM Webinar\, 9125 N Old State Rd\, Lincoln\, DE\, 19960\, United States
CATEGORIES:Video Session
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2024/09/Cabaletta-Bio.png
ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240929T190000
DTEND;TZID=America/New_York:20240929T210000
DTSTAMP:20260416T215527
CREATED:20240103T201449Z
LAST-MODIFIED:20250909T193117Z
UID:10001603-1727636400-1727643600@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-2/2024-09-29/
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:20240928T190000
DTEND;TZID=America/New_York:20240928T210000
DTSTAMP:20260416T215527
CREATED:20240103T204605Z
LAST-MODIFIED:20250909T182144Z
UID:10001540-1727550000-1727557200@understandingmyositis.org
SUMMARY:Necrotizing Myopathy Patient Video Support
DESCRIPTION:[vc_row el_id=”details” padding_top=”20″ padding_bottom=”20″][vc_column][vc_column_text] \nStarting at 7 PM Eastern time\n(6 PM CT\, 5 PM MT\, 4 PM PT) \nIMNM / NAM Patients\, click the button below to register once to attend this and all future sessions. \n[/vc_column_text] REGISTER[/vc_column][/vc_row][vc_row][vc_column]\n\n    \n                        \n                    \n                        Session Details                    \n                \n                                \n                    \n                        Session Policies                    \n                \n                                \n                    \n                        FAQ                    \n                \n                    \n    \n        \n\n    [vc_column_text css=””]Join fellow Immune-Mediated Necrotizing Myopathy patients for a private\, real-time group video support session and share your challenges\, hopes\, fears\, circumstances\, ask questions and talk to others going through the same or similar situations\, including the emotional aspects of Myositis life with a focus on gratitude and living our best lives. \nThis session is tailored to those diagnosed with Immune-Mediated Necrotizing Myopathy (IMNM)\, sometimes referred to as Necrotizing Autoimmune Myopathy (NAM). \nRegistration is required. After registration\, you will receive an email with details to join. See the link to register at the top of this page. \nYou do not have to turn your camera on and you will never be required to speak. \nCheck out all of our video support sessions\, and other support options. [/vc_column_text][vc_column_text]Monthly Necrotizing Myopathy session is held on the last Saturday of each month starting at:  \n7 PM Eastern Time \n6 PM Central Time \n5 PM Mountain Time \n4 PM Pacific Time[/vc_column_text]\n\n\n    [vc_column_text css=””] \nSupport Session Guidelines\nWe don’t like to impose rules\, however\, to keep everyone safe please read over the policies below. \nSession Privacy\, Trust\, and Behavior\nTo keep everyone feeling safe\, here is a list of our general\, but important\, policies. \n\nAnything shared in the video support group session stays there! Just as in our closed online support groups\, we trust that you will follow this strict rule. No sharing of private discussions outside of the support session.\nWhen sharing\, we ask you to be mindful of time so everyone has a chance to share.\nIf you have something to add to the discussion\, we ask that you do not interrupt while someone is speaking. The hosts will announce at the start of the session how each session will run.\nAnything shared should be audience-appropriate. We will not tolerate hate speech\, bullying\, inappropriate comments\, or the promotion of any outside services\, products\, websites\, or other online links that are not related to our discussions.\n\nWe will NOT have or provide: \n\nA debate about science;\nA political discussion;\nA conversation about conspiracy theories;\nMedical advice (beyond what is listed as criteria to call your doctor).\n\nWhat we hope this video support session will be: \n\nA safe space to voice your experiences and ask questions among similarly situated people who understand;\nA place to get ideas for staying sane while practicing social distancing\, isolation\, or quarantine;\nA chance to get ideas for staying safe if you must continue participating in the outside world;\nAn opportunity to see that you are not alone.\n\nThe views and opinions of session Hosts\, Co-hosts\, and Volunteers are not that of Myositis Support and Understanding (MSU). [/vc_column_text]\n\n\n    [vc_column_text] \nHow do I join video support sessions?\nZoom is available for almost all devices including computers\, laptops\, smartphones\, and tablets. \nTo install Zoom on a computer/laptop: Visit the Downloads page on Zoom’s website and download/install the Zoom Client for Meetings. \nTo install Zoom on a device: Visit your App store and search for Zoom and install. \nThen\, visit our Events Calendar and register for the monthly support sessions that interest you. \nIf you need additional help\, we have Zoom help documents with more detail. \nWhy do I have to register?\nBecause of security concerns and to ensure we are able to better provide a safe space and control who joins the sessions we require registration. Register once to attend this monthly session. After registration\, you will receive an email with the details to join on Zoom\, which also includes a link to add it to your calendar.[/vc_column_text]\n\n			\n\n[/vc_column][/vc_row][vc_row padding_top=”0″ padding_bottom=”0″][vc_column][vc_message style=”square” icon_type=”fontawesome” icon_fontawesome=”fas fa-exclamation” css=””]Running late? That’s okay. Join us anyway! Video support sessions vary in length and number of attendees but are generally 90 minutes long\, so join us anytime.[/vc_message][/vc_column][/vc_row]
URL:https://understandingmyositis.org/event/imnm-video-support-2/2024-09-28/
LOCATION:MSU Zoom Video Session\, Video session using Zoom
CATEGORIES:Video Support Sessions
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2024/01/Necrotizing-Myopathy-Support-Event-Graphic-1200-x-630-px.png
ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240927T170000
DTEND;TZID=America/New_York:20240927T190000
DTSTAMP:20260416T215527
CREATED:20240117T151337Z
LAST-MODIFIED:20250909T181333Z
UID:10001528-1727456400-1727463600@understandingmyositis.org
SUMMARY:IBM Patient Virtual Support Group
DESCRIPTION:[vc_row el_id=”details” padding_top=”20″ padding_bottom=”20″][vc_column][vc_column_text] \nStarting at 5 PM Eastern time\n(4 PM CT\, 3 PM MT\, 2 PM PT) \nIBM Patients\, click the button below to register to attend. \n[/vc_column_text] REGISTER[vc_message style=”square” message_box_color=”warning” icon_type=”fontawesome” icon_fontawesome=”fas fa-star-of-life” css=””]Register once to attend all IBM virtual support sessions. After registration\, you will receive an email with the details to join. Be sure to check your junk or spam email folders. \nRegister again for an updated email from Zoom that contains the dates for 2025 and provides a link to add them to your calendar.[/vc_message][/vc_column][/vc_row][vc_row][vc_column]\n\n    \n                        \n                    \n                        Session Details                    \n                \n                                \n                    \n                        Session Policies                    \n                \n                                \n                    \n                        FAQ                    \n                \n                    \n    \n        \n\n    [vc_column_text css=””]Join fellow Inclusion Body Myositis patients for a private\, real-time group video support session and share your challenges\, hopes\, fears\, circumstances\, ask questions and talk to others going through the same or similar situations\, including the emotional aspects of myositis life with a focus on gratitude and living our best lives with IBM. \nSupport sessions are never recorded. These are private\, real-time video support sessions and not the educational sessions we provide. \nThis session is tailored to those diagnosed with or suspected of having Inclusion Body Myositis (IBM). Patients are welcome to include their spouse or care partner in these sessions. \nWe host this separate video support session because IBM is very different from the other forms of Myositis. IBM is a slowly progressive and degenerative muscle disease with no available treatment options\, outside of an exercise program. \nRegistration is required. After registration\, you will receive an email with details to join. See the link to register at the top of this page. \nYou do not have to turn your camera on and you will never be required to speak. \nCheck out all of our video support sessions\, and other support options. [/vc_column_text]\n\n\n    [vc_column_text css=””] \nSupport Session Guidelines\nWe don’t like to impose rules\, however\, to keep everyone safe please read over the policies below. \nSession Privacy\, Trust\, and Behavior\nTo keep everyone feeling safe\, here is a list of our general\, but important\, policies. \n\nAnything shared in the video support group session stays there! Just as in our closed online support groups\, we trust that you will follow this strict rule. No sharing of private discussions outside of the support session.\nWhen sharing\, we ask you to be mindful of time so everyone has a chance to share.\nIf you have something to add to the discussion\, we ask that you do not interrupt while someone is speaking. The hosts will announce at the start of the session how each session will run.\nAnything shared should be audience-appropriate. We will not tolerate hate speech\, bullying\, inappropriate comments\, or the promotion of any outside services\, products\, websites\, or other online links that are not related to our discussions.\n\nWe will NOT have or provide: \n\nA debate about science;\nA political discussion;\nA conversation about conspiracy theories;\nMedical advice (beyond what is listed as criteria to call your doctor).\n\nWhat we hope this video support session will be: \n\nA safe space to voice your experiences and ask questions among similarly situated people who understand;\nA place to get ideas for staying sane while practicing social distancing\, isolation\, or quarantine;\nA chance to get ideas for staying safe if you must continue participating in the outside world;\nAn opportunity to see that you are not alone.\n\nThe views and opinions of session Hosts\, Co-hosts\, and Volunteers are not that of Myositis Support and Understanding (MSU). [/vc_column_text]\n\n\n    [vc_column_text] \nHow do I join video support sessions?\nZoom is available for almost all devices including computers\, laptops\, smartphones\, and tablets. \nTo install Zoom on a computer/laptop: Visit the Downloads page on Zoom’s website and download/install the Zoom Client for Meetings. \nTo install Zoom on a device: Visit your App store and search for Zoom and install. \nThen\, visit our Events Calendar and register for the monthly support sessions that interest you. \nIf you need additional help\, we have Zoom help documents with more detail. \nWhy do I have to register?\nBecause of security concerns and to ensure we are able to better provide a safe space and control who joins the sessions we require registration. Register once to attend this monthly session. After registration\, you will receive an email with the details to join on Zoom\, which also includes a link to add it to your calendar.[/vc_column_text]\n\n			\n\n[/vc_column][/vc_row][vc_row padding_top=”0″ padding_bottom=”0″][vc_column][vc_message style=”square” icon_type=”fontawesome” icon_fontawesome=”fas fa-exclamation” css=””]Running late? That’s okay. Join us anyway! Video support sessions vary in length and number of attendees but are generally 90 minutes long\, so join us anytime.[/vc_message][/vc_column][/vc_row]
URL:https://understandingmyositis.org/event/ibm-patient-video-support-2/2024-09-27/
LOCATION:MSU Zoom Video Session\, Video session using Zoom
CATEGORIES:Video Support Sessions
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2024/01/Inclusion-Body-Myositis-Event-Graphic-1200-x-630-px-2.png
ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240926T130000
DTEND;TZID=America/New_York:20240926T143000
DTSTAMP:20260416T215527
CREATED:20240103T201105Z
LAST-MODIFIED:20250909T193238Z
UID:10001456-1727355600-1727361000@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-2-2/2024-09-26/
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:20240924T180000
DTEND;TZID=America/New_York:20240924T190000
DTSTAMP:20260416T215527
CREATED:20240904T161008Z
LAST-MODIFIED:20241231T180233Z
UID:10001882-1727200800-1727204400@understandingmyositis.org
SUMMARY:Shifting Your Mindset
DESCRIPTION:[vc_row][vc_column] [vc_column_text css=””] \n4th Tuesday Of The Month\nStarting Tuesday\, September 24 & Ending March 25th\, 2025\n(December will be on the 17th instead of the 24th) \n6 PM ET / 5 PM CT / 4 PM MT / 3 PM PT\n[/vc_column_text][vc_empty_space][vc_column_text css=””] \nLiving Fully with Myositis: MSU’s #MyositisLife Initiative Series Presents: Our New 7-Part Series: Shifting Your Mindset!\nWe are excited to announce our empowering Shifting Your Mindset series\, designed specifically for those living with Myositis. Over the next seven months\, we will embark on a transformative journey together! \n✨ Discover Your Inherent Value: Society often places expectations that can make those with chronic illnesses feel “less than.” This series encourages you to embrace your unique experience with Myositis\, shifting from feelings of inadequacy to owning your worth. \nCultivate Compassion: Learn to build a more compassionate relationship with your illness\, yourself\, and your body. We’ll explore how to listen to what your body needs and nurture yourself through moments of uncertainty. \n️ Gain Practical Tools: Move beyond fear\, despair\, and self-judgment. You’ll leave each session equipped with practices that guide you toward acceptance and presence\, empowering you to embrace how your body shows up each day. \nFormat: The first half of each session will feature a recorded presentation (recorded on speaker view with profile pictures hidden to protect anonymity). The latter half will open up to discussion\, providing a safe space for sharing and connection. \nJoin us on this journey of self-discovery and empowerment from September to March. Together\, we will shift our mindsets and foster a supportive community where we can thrive![/vc_column_text][vc_empty_space] Register to Join on Zoom 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/shifting-your-mindset/2024-09-24/
LOCATION:MSU Zoom Video Session\, Video session using Zoom
CATEGORIES:Video Session
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2024/09/Shifting-Your-Mindset-11.png
ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240922T190000
DTEND;TZID=America/New_York:20240922T210000
DTSTAMP:20260416T215527
CREATED:20240103T201449Z
LAST-MODIFIED:20250909T193117Z
UID:10001602-1727031600-1727038800@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-2/2024-09-22/
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:20240921T140000
DTEND;TZID=America/New_York:20240921T160000
DTSTAMP:20260416T215527
CREATED:20240718T000208Z
LAST-MODIFIED:20250910T182106Z
UID:10001807-1726927200-1726934400@understandingmyositis.org
SUMMARY:International Myositis Virtual Support Group
DESCRIPTION:[vc_row el_id=”details” padding_top=”20″ padding_bottom=”20″][vc_column][vc_column_text css=””] \nStarting at 2 PM Eastern time\n(1 PM CT\, 12 PM MT\, 11 AM PT) \nMyositis Patients\, click the button below to register to attend. \n[/vc_column_text] REGISTER TO ATTEND[vc_message style=”square” message_box_color=”warning” icon_type=”fontawesome” icon_fontawesome=”fas fa-star-of-life” css=””]Register once to attend the International Saturday Patient Support After you register\, you will receive an email with the details to join. \nRegister again for an updated email from Zoom with the new sessions added and an option to add them to your calendar.[/vc_message][/vc_column][/vc_row][vc_row][vc_column]\n\n    \n                        \n                    \n                        Session Details                    \n                \n                                \n                    \n                        Session Policies                    \n                \n                                \n                    \n                        FAQ                    \n                \n                    \n    \n        \n\n    [vc_column_text css=””]International Myositis Virtual Support Group for all Myositis patients and their care partners\, held on Zoom. This is a fantastic opportunity to connect with others from around the world\, share experiences\, and offer mutual support in a safe and welcoming environment. \nWhen: Every third Saturday of the month \nTime: 2:00 PM ET (Eastern Time\, USA) 1:00 PM CT (Central Time\, USA) 12:00 PM MT (Mountain Time\, USA) 11:00 AM PT (Pacific Time\, USA) 7:00 PM BST (British Summer Time\, UK) 8:00 PM CEST (Central European Summer Time) \nWhether you are newly diagnosed or have been managing Myositis for years\, this group is here to provide community\, resources\, and understanding. We look forward to seeing you there! \nThis session is tailored to anyone living with any of the types of Myositis including Polymyositis (PM)\, Dermatomyositis (DM)\, Clinically Amyopathic Dermatomyositis (CADM)\, Antisynthetase Syndrome (ASyS)\, Immune-Mediated Necrotizing Myopathy (IMNM)\, Inclusion Body Myositis (IBM)\, adults with and parents of children with Juvenile Dermatomyositis (JDM)\, Nonspecific Myositis\, and Overlapping Myositis with other conditions such as with Mixed Connective Tissue Disease. \nRegistration is required. After registration\, you will receive an email with details to join. See the link to register at the top of this page. \nJoin with your camera on or off. Join to be a part of the discussion or listen in. \nCheck out all of our video support sessions\, and other support options. [/vc_column_text]\n\n\n    [vc_column_text css=””] \nSupport Session Guidelines\nWe don’t like to impose rules\, however\, to keep everyone safe please read over the policies below. \nSession Privacy\, Trust\, and Behavior\nTo keep everyone feeling safe\, here is a list of our general\, but important\, policies. \n\nAnything shared in the video support group session stays there! Just as in our closed online support groups\, we trust that you will follow this strict rule. No sharing of private discussions outside of the video support session.\nWhen sharing\, we ask you to be mindful of time so everyone has a chance to share.\nIf you have something to add to the discussion\, we ask that you do not interrupt while someone is speaking. The hosts will announce at the start of the session how each session will run.\nAnything shared should be audience-appropriate. We will not tolerate hate speech\, bullying\, inappropriate comments or jokes\, or the promotion of any outside services\, products\, websites\, or other online links that are not related to our discussions.\n\nWe will NOT have or provide: \n\nA debate about science;\nA political discussion;\nA conversation about conspiracy theories;\nMedical advice (beyond what is listed as criteria to call your doctor).\n\nWhat we hope this video support session will be: \n\nA safe space to voice your experiences and ask questions among similarly situated people who understand;\nA place to get ideas for staying sane while practicing social distancing\, isolation\, or quarantine;\nA chance to get ideas for staying safe if you must continue participating in the outside world;\nAn opportunity to see that you are not alone.\n\nThe views and opinions of session Hosts\, Co-hosts\, and Volunteers are not that of Myositis Support and Understanding (MSU). [/vc_column_text]\n\n\n    [vc_column_text] \nHow do I join video support sessions?\nZoom is available for almost all devices including computers\, laptops\, smartphones\, and tablets. \nTo install Zoom on a computer/laptop: Visit the Downloads page on Zoom’s website and download/install the Zoom Client for Meetings. \nTo install Zoom on a device: Visit your App store and search for Zoom and install. \nThen\, visit our Events Calendar and register for the monthly support sessions that interest you. \nIf you need additional help\, we have Zoom help documents with more detail. \nWhy do I have to register?\nBecause of security concerns and to ensure we are able to better provide a safe space and control who joins the sessions we require registration. Register once to attend this monthly session. After registration\, you will receive an email with the details to join on Zoom\, which also includes a link to add it to your calendar.[/vc_column_text]\n\n			\n\n[/vc_column][/vc_row][vc_row padding_top=”0″ padding_bottom=”0″][vc_column][vc_message style=”square” icon_type=”fontawesome” icon_fontawesome=”fas fa-exclamation” css=””]Running late? That’s okay. Join us anyway! Video support sessions vary in length and number of attendees but are generally 90 minutes long\, so join us anytime.[/vc_message][/vc_column][/vc_row]
URL:https://understandingmyositis.org/event/international-myositis-video-support/2024-09-21/
LOCATION:MSU Zoom Video Session\, Video session using Zoom
CATEGORIES:Video Support Sessions
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2024/07/International-Myositis-Support-Group-Graphic-3.png
ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240919T130000
DTEND;TZID=America/New_York:20240919T143000
DTSTAMP:20260416T215527
CREATED:20240103T201105Z
LAST-MODIFIED:20250909T193238Z
UID:10001455-1726750800-1726756200@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-2-2/2024-09-19/
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:20240918T140000
DTEND;TZID=America/New_York:20240918T150000
DTSTAMP:20260416T215527
CREATED:20240904T192513Z
LAST-MODIFIED:20240905T153729Z
UID:10001868-1726668000-1726671600@understandingmyositis.org
SUMMARY:Innovative Approaches in Biopharmaceutical Research: Ensuring Patient-Centric Healthcare Solutions
DESCRIPTION:[vc_row][vc_column][vc_column_text css=””]In this webinar\, we’ll highlight the impactful collaboration between Galapagos and MSU\, focusing on our shared dedication to patient-centric healthcare. Our partnership has been vital in several initiatives\, including the collection of patient voices for our ongoing Phase 2 clinical trial. At Galapagos\, our research in inflammation and oncology is driven by a commitment to ensure that patient perspectives are central to our initiatives\, shaping solutions that truly meet patient needs and expectations. \nA significant aspect of our approach is the development of patient facing materials including informed consent documents. Zoltan Koleszar\, GLPG Patient Advocacy Leader\, will share his expertise on how patient recommendations are integrated into these critical documents. He will discuss how we ensure that the informed consent process is transparent\, comprehensible\, and respectful of patient needs\, and outline how these documents are approved for use in clinical trials. \nAdditionally\, we will feature a pre-recorded segment by Ann Fieuw\, GLPG Senior Medical Director. Ann will provide valuable insights into recent trends in dermatomyositis and information on our ongoing clinical trial. \nJoin us for this comprehensive session to understand how Galapagos is integrating patient feedback into every stage of research\, ensuring that our healthcare solutions are as effective and relevant as possible.[/vc_column_text][/vc_column][/vc_row][vc_row][vc_column][/vc_column][/vc_row][vc_row][vc_column] REGISTER[/vc_column][/vc_row]
URL:https://understandingmyositis.org/event/innovative-approaches-in-biopharmaceutical-research-ensuring-patient-centric-healthcare-solutions/
LOCATION:ZOOM Webinar\, 9125 N Old State Rd\, Lincoln\, DE\, 19960\, United States
CATEGORIES:Video Session
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2024/09/Galapagos-Webinar-Graphic.png
ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240916T150000
DTEND;TZID=America/New_York:20240916T163000
DTSTAMP:20260416T215527
CREATED:20240117T151829Z
LAST-MODIFIED:20250909T193352Z
UID:10001203-1726498800-1726504200@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-2-2-2/2024-09-16/
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:20240915T190000
DTEND;TZID=America/New_York:20240915T210000
DTSTAMP:20260416T215527
CREATED:20240103T201449Z
LAST-MODIFIED:20250909T193117Z
UID:10001601-1726426800-1726434000@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-2/2024-09-15/
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:20240912T130000
DTEND;TZID=America/New_York:20240912T143000
DTSTAMP:20260416T215527
CREATED:20240103T201105Z
LAST-MODIFIED:20250909T193238Z
UID:10001454-1726146000-1726151400@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-2-2/2024-09-12/
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:20240908T190000
DTEND;TZID=America/New_York:20240908T210000
DTSTAMP:20260416T215527
CREATED:20240103T201449Z
LAST-MODIFIED:20250909T193117Z
UID:10001600-1725822000-1725829200@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-2/2024-09-08/
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:20240905T130000
DTEND;TZID=America/New_York:20240905T143000
DTSTAMP:20260416T215527
CREATED:20240103T201105Z
LAST-MODIFIED:20250909T193238Z
UID:10001453-1725541200-1725546600@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-2-2/2024-09-05/
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:20240904T190000
DTEND;TZID=America/New_York:20240904T210000
DTSTAMP:20260416T215527
CREATED:20240103T200832Z
LAST-MODIFIED:20250910T221541Z
UID:10001730-1725476400-1725483600@understandingmyositis.org
SUMMARY:Wednesday Evening Myositis Support Group
DESCRIPTION:[vc_row el_id=”details” padding_top=”20″ padding_bottom=”20″][vc_column][vc_column_text css=””] \nStarting at 7 PM ET\n(6 PM CT\, 5 PM MT\, 4 PM PT)\nClick the button below to register to attend. \n[/vc_column_text] REGISTER[vc_message style=”square” message_box_color=”warning” icon_type=”fontawesome” icon_fontawesome=”fas fa-star-of-life”]Register once to attend all monthly Wednesday evening myositis support sessions. After registration\, you will receive an email with the details to join. When new sessions are added or changed for some reason\, you will receive an email update.[/vc_message][/vc_column][/vc_row][vc_row][vc_column]\n\n    \n                        \n                    \n                        Session Details                    \n                \n                                \n                    \n                        Session Policies                    \n                \n                                \n                    \n                        FAQ                    \n                \n                    \n    \n        \n\n    [vc_column_text css=””]Join fellow Myositis patients for a private\, real-time group video support session and share your challenges\, hopes\, fears\, circumstances\, ask questions and talk to others going through the same or similar situations\, including the emotional aspects of Myositis life\, with a focus on gratitude and living our best life with Myositis. \nThis session is tailored to anyone living with any of the types of myositis including Polymyositis (PM)\, Dermatomyositis (DM)\, Clinically Amyopathic Dermatomyositis (CADM)\, Antisynthetase Syndrome (ASyS)\, Immune-Mediated Necrotizing Myopathy (IMNM)\, Inclusion Body Myositis (IBM)\, adults with and parents of children with Juvenile Dermatomyositis (JDM)\, Nonspecific Myositis\, and Overlapping Myositis with other conditions such as with Mixed Connective Tissue Disease. \nRegistration is required. After registration\, you will receive an email with details to join. See the link to register at the top of this page. \nJoin with your camera on or off. Join to be a part of the discussion or listen in. \nCheck out all of our video support sessions\, and other support options. [/vc_column_text]\n\n\n    [vc_column_text css=””] \nSupport Session Guidelines\nWe don’t like to impose rules\, however\, to keep everyone safe please read over the policies below. \nSession Privacy\, Trust\, and Behavior\nTo keep everyone feeling safe\, here is a list of our general\, but important\, policies. \n\nAnything shared in the video support group session stays there! Just as in our closed online support groups\, we trust that you will follow this strict rule. No sharing of private discussions outside of the video support session.\nWhen sharing\, we ask you to be mindful of time so everyone has a chance to share.\nIf you have something to add to the discussion\, we ask that you do not interrupt while someone is speaking. The hosts will announce at the start of the session how each session will run.\nAnything shared should be audience-appropriate. We will not tolerate hate speech\, bullying\, inappropriate comments or jokes\, or the promotion of any outside services\, products\, websites\, or other online links that are not related to our discussions.\n\nWe will NOT have or provide: \n\nA debate about science;\nA political discussion;\nA conversation about conspiracy theories;\nMedical advice (beyond what is listed as criteria to call your doctor).\n\nWhat we hope this video support session will be: \n\nA safe space to voice your experiences and ask questions among similarly situated people who understand;\nA place to get ideas for staying sane while practicing social distancing\, isolation\, or quarantine;\nA chance to get ideas for staying safe if you must continue participating in the outside world;\nAn opportunity to see that you are not alone.\n\nThe views and opinions of session Hosts\, Co-hosts\, and Volunteers are not that of Myositis Support and Understanding (MSU). [/vc_column_text]\n\n\n    [vc_column_text] \nHow do I join video support sessions?\nZoom is available for almost all devices including computers\, laptops\, smartphones\, and tablets. \nTo install Zoom on a computer/laptop: Visit the Downloads page on Zoom’s website and download/install the Zoom Client for Meetings. \nTo install Zoom on a device: Visit your App store and search for Zoom and install. \nThen\, visit our Events Calendar and register for the monthly support sessions that interest you. \nIf you need additional help\, we have Zoom help documents with more detail. \nWhy do I have to register?\nBecause of security concerns and to ensure we are able to better provide a safe space and control who joins the sessions we require registration. Register once to attend this monthly session. After registration\, you will receive an email with the details to join on Zoom\, which also includes a link to add it to your calendar.[/vc_column_text]\n\n			\n\n[/vc_column][/vc_row][vc_row padding_top=”0″ padding_bottom=”0″][vc_column][vc_message style=”square” icon_type=”fontawesome” icon_fontawesome=”fas fa-exclamation”]Running late? That’s okay. Join us anyway! Video support sessions vary in length and number of attendees but are generally 90 minutes long\, so join us anytime within the first hour.[/vc_message][/vc_column][/vc_row]
URL:https://understandingmyositis.org/event/myositis-patient-video-support-2/2024-09-04/
LOCATION:MSU Zoom Video Session\, Video session using Zoom
CATEGORIES:Video Support Sessions
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2024/01/MSU-Wednesday-Evening-Support-Event-IG-1200-x-630-px-4.png
ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240902T190000
DTEND;TZID=America/New_York:20240902T210000
DTSTAMP:20260416T215527
CREATED:20240103T203043Z
LAST-MODIFIED:20240103T203935Z
UID:10001480-1725303600-1725310800@understandingmyositis.org
SUMMARY:Women with Myositis Zoom Support
DESCRIPTION:[vc_row el_id=”details” disable_element=”yes” padding_top=”20″ padding_bottom=”20″][vc_column][vc_message message_box_style=”outline” message_box_color=”orange” icon_fontello=””] \nWomen’s Group\nStarting at 7 PM ET / 6 PM CT / 5 PM MT / 4 PM PT \n[/vc_message] REGISTER for Future Zoom Sessions[/vc_column][/vc_row][vc_row el_id=”details” padding_top=”20″ padding_bottom=”20″][vc_column][vc_message message_box_style=”outline” message_box_color=”orange” icon_fontello=””] \nStarting at 7 PM ET / 6 PM CT / 5 PM MT / 4 PM PT\n[/vc_message] REGISTER TO ATTEND[/vc_column][/vc_row][vc_row][vc_column]\n\n    \n                        \n                    \n                        Session Details                    \n                \n                                \n                    \n                        Session Policies                    \n                \n                                \n                    \n                        FAQ                    \n                \n                    \n    \n        \n\n    [vc_column_text]Join fellow women with myositis for a private\, real-time group video support session and share your challenges\, hopes\, fears\, circumstances\, and talk to others going through the same or similar situations\, including the emotional aspects of myositis life with a focus on gratitude. \nSupport sessions are never recorded. These are private\, real-time video support sessions and not the educational sessions we provide. \nThis session is open to all women with any type of myositis. \nRegistration is required. After registration\, you will receive an email with details to join. See the link to register at the top of this page. \nYou do not have to turn your camera on and you will never be required to speak. \nCheck out all of our video support sessions\, and other support options. [/vc_column_text][vc_column_text]Monthly Women with Myositis session is held on the 1st Monday of each month starting at:  \n7 PM Eastern Time \n6 PM Central Time \n5 PM Mountain Time \n4 PM Pacific Time[/vc_column_text]\n\n\n    [vc_column_text] \nSupport Session Guidelines\nWe don’t like to impose rules\, however\, to keep everyone safe please read over the policies below. \nSession Privacy\, Trust\, and Behavior\nTo keep everyone feeling safe\, here is a list of our general\, but important\, policies. \n\nAnything shared in the video support group session stays there! Just as in our closed online support groups\, we trust that you will follow this strict rule. No sharing of private discussions outside of the video support session.\nWhen sharing\, we ask you to be mindful of time so that everyone has a chance to share.\nIf you have something to add to the discussion\, we ask that you do not interrupt while someone is speaking. The hosts will announce at the start of the session how each session will run.\nAnything shared should be audience-appropriate. We will not tolerate hate speech\, bullying\, inappropriate comments or jokes\, or the promotion of any outside services\, products\, websites\, or other online links that are not related to our discussions.\n\nWhen discussing COVID-19 . . .\nWhen discussing COVID-19\, to keep all of our members safe and comfortable\, and to protect the integrity of the conversation\, we will continue to enforce the rules we put in place below. We will have a no-tolerance policy for these rules and thankfully have not had to use them. We will give one warning and then will ask you to leave the session if you will not comply. We are not equipped to answer the questions about science or conspiracies\, and therefore we must ask that they are left at the door. \nWe will NOT have or provide: \n\nA debate about science;\nA political discussion;\nA conversation about conspiracy theories;\nMedical advice (beyond what is listed as criteria to call your doctor).\n\nWhat we hope this video support session will be: \n\nA safe space to voice your experiences and ask questions among similarly situated people who understand;\nA place to get ideas for staying sane while practicing social distancing\, isolation\, or quarantine;\nA chance to get ideas for staying safe if you must continue participating in the outside world;\nAn opportunity to see that you are not alone.\n\nThe views and opinions of session Hosts\, Co-hosts\, and Volunteers are not that of Myositis Support and Understanding (MSU). [/vc_column_text]\n\n\n    [vc_column_text] \nHow do I join video support sessions?\nZoom is available for almost all devices including computers\, laptops\, smartphones\, and tablets. \nTo install Zoom on a computer/laptop: Visit the Downloads page on Zoom’s website and download/install the Zoom Client for Meetings. \nTo install Zoom on a device: Visit your App store and search for Zoom and install. \nThen\, visit our Events Calendar and register for the monthly support sessions that interest you. \nIf you need additional help\, we have Zoom help documents with more detail. \nWhy do I have to register?\nBecause of security concerns and to ensure we are able to better provide a safe space and control who joins the sessions we require registration. Register once to attend this monthly session. After registration\, you will receive an email with the details to join on Zoom\, which also includes a link to add it to your calendar.[/vc_column_text]\n\n			\n\n[/vc_column][/vc_row][vc_row padding_top=”0″ padding_bottom=”0″][vc_column][vc_message style=”square” icon_type=”fontawesome” icon_fontawesome=”fas fa-exclamation”]Running late? That’s okay. Join us anyway! Video support sessions vary in length and number of attendees but are generally 90 minutes long\, so join us anytime within the first hour.[/vc_message][/vc_column][/vc_row]
URL:https://understandingmyositis.org/event/myositislife-womens-support-group-2-2/2024-09-02/
LOCATION:MSU Zoom Video Session\, Video session using Zoom
CATEGORIES:Video Support Sessions
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2017/01/MSU-Women-Event-FB-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:20240902T190000
DTEND;TZID=America/New_York:20240902T210000
DTSTAMP:20260416T215527
CREATED:20211219T151428Z
LAST-MODIFIED:20260131T221504Z
UID:10005777-1725303600-1725310800@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/2024-09-02/
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:20240901T190000
DTEND;TZID=America/New_York:20240901T210000
DTSTAMP:20260416T215527
CREATED:20240103T201449Z
LAST-MODIFIED:20250909T193117Z
UID:10001599-1725217200-1725224400@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-2/2024-09-01/
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:20240831T190000
DTEND;TZID=America/New_York:20240831T210000
DTSTAMP:20260416T215528
CREATED:20240103T204605Z
LAST-MODIFIED:20250909T182144Z
UID:10001539-1725130800-1725138000@understandingmyositis.org
SUMMARY:Necrotizing Myopathy Patient Video Support
DESCRIPTION:[vc_row el_id=”details” padding_top=”20″ padding_bottom=”20″][vc_column][vc_column_text] \nStarting at 7 PM Eastern time\n(6 PM CT\, 5 PM MT\, 4 PM PT) \nIMNM / NAM Patients\, click the button below to register once to attend this and all future sessions. \n[/vc_column_text] REGISTER[/vc_column][/vc_row][vc_row][vc_column]\n\n    \n                        \n                    \n                        Session Details                    \n                \n                                \n                    \n                        Session Policies                    \n                \n                                \n                    \n                        FAQ                    \n                \n                    \n    \n        \n\n    [vc_column_text css=””]Join fellow Immune-Mediated Necrotizing Myopathy patients for a private\, real-time group video support session and share your challenges\, hopes\, fears\, circumstances\, ask questions and talk to others going through the same or similar situations\, including the emotional aspects of Myositis life with a focus on gratitude and living our best lives. \nThis session is tailored to those diagnosed with Immune-Mediated Necrotizing Myopathy (IMNM)\, sometimes referred to as Necrotizing Autoimmune Myopathy (NAM). \nRegistration is required. After registration\, you will receive an email with details to join. See the link to register at the top of this page. \nYou do not have to turn your camera on and you will never be required to speak. \nCheck out all of our video support sessions\, and other support options. [/vc_column_text][vc_column_text]Monthly Necrotizing Myopathy session is held on the last Saturday of each month starting at:  \n7 PM Eastern Time \n6 PM Central Time \n5 PM Mountain Time \n4 PM Pacific Time[/vc_column_text]\n\n\n    [vc_column_text css=””] \nSupport Session Guidelines\nWe don’t like to impose rules\, however\, to keep everyone safe please read over the policies below. \nSession Privacy\, Trust\, and Behavior\nTo keep everyone feeling safe\, here is a list of our general\, but important\, policies. \n\nAnything shared in the video support group session stays there! Just as in our closed online support groups\, we trust that you will follow this strict rule. No sharing of private discussions outside of the support session.\nWhen sharing\, we ask you to be mindful of time so everyone has a chance to share.\nIf you have something to add to the discussion\, we ask that you do not interrupt while someone is speaking. The hosts will announce at the start of the session how each session will run.\nAnything shared should be audience-appropriate. We will not tolerate hate speech\, bullying\, inappropriate comments\, or the promotion of any outside services\, products\, websites\, or other online links that are not related to our discussions.\n\nWe will NOT have or provide: \n\nA debate about science;\nA political discussion;\nA conversation about conspiracy theories;\nMedical advice (beyond what is listed as criteria to call your doctor).\n\nWhat we hope this video support session will be: \n\nA safe space to voice your experiences and ask questions among similarly situated people who understand;\nA place to get ideas for staying sane while practicing social distancing\, isolation\, or quarantine;\nA chance to get ideas for staying safe if you must continue participating in the outside world;\nAn opportunity to see that you are not alone.\n\nThe views and opinions of session Hosts\, Co-hosts\, and Volunteers are not that of Myositis Support and Understanding (MSU). [/vc_column_text]\n\n\n    [vc_column_text] \nHow do I join video support sessions?\nZoom is available for almost all devices including computers\, laptops\, smartphones\, and tablets. \nTo install Zoom on a computer/laptop: Visit the Downloads page on Zoom’s website and download/install the Zoom Client for Meetings. \nTo install Zoom on a device: Visit your App store and search for Zoom and install. \nThen\, visit our Events Calendar and register for the monthly support sessions that interest you. \nIf you need additional help\, we have Zoom help documents with more detail. \nWhy do I have to register?\nBecause of security concerns and to ensure we are able to better provide a safe space and control who joins the sessions we require registration. Register once to attend this monthly session. After registration\, you will receive an email with the details to join on Zoom\, which also includes a link to add it to your calendar.[/vc_column_text]\n\n			\n\n[/vc_column][/vc_row][vc_row padding_top=”0″ padding_bottom=”0″][vc_column][vc_message style=”square” icon_type=”fontawesome” icon_fontawesome=”fas fa-exclamation” css=””]Running late? That’s okay. Join us anyway! Video support sessions vary in length and number of attendees but are generally 90 minutes long\, so join us anytime.[/vc_message][/vc_column][/vc_row]
URL:https://understandingmyositis.org/event/imnm-video-support-2/2024-08-31/
LOCATION:MSU Zoom Video Session\, Video session using Zoom
CATEGORIES:Video Support Sessions
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2024/01/Necrotizing-Myopathy-Support-Event-Graphic-1200-x-630-px.png
ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240830T170000
DTEND;TZID=America/New_York:20240830T190000
DTSTAMP:20260416T215528
CREATED:20240117T151337Z
LAST-MODIFIED:20250909T181333Z
UID:10001527-1725037200-1725044400@understandingmyositis.org
SUMMARY:IBM Patient Virtual Support Group
DESCRIPTION:[vc_row el_id=”details” padding_top=”20″ padding_bottom=”20″][vc_column][vc_column_text] \nStarting at 5 PM Eastern time\n(4 PM CT\, 3 PM MT\, 2 PM PT) \nIBM Patients\, click the button below to register to attend. \n[/vc_column_text] REGISTER[vc_message style=”square” message_box_color=”warning” icon_type=”fontawesome” icon_fontawesome=”fas fa-star-of-life” css=””]Register once to attend all IBM virtual support sessions. After registration\, you will receive an email with the details to join. Be sure to check your junk or spam email folders. \nRegister again for an updated email from Zoom that contains the dates for 2025 and provides a link to add them to your calendar.[/vc_message][/vc_column][/vc_row][vc_row][vc_column]\n\n    \n                        \n                    \n                        Session Details                    \n                \n                                \n                    \n                        Session Policies                    \n                \n                                \n                    \n                        FAQ                    \n                \n                    \n    \n        \n\n    [vc_column_text css=””]Join fellow Inclusion Body Myositis patients for a private\, real-time group video support session and share your challenges\, hopes\, fears\, circumstances\, ask questions and talk to others going through the same or similar situations\, including the emotional aspects of myositis life with a focus on gratitude and living our best lives with IBM. \nSupport sessions are never recorded. These are private\, real-time video support sessions and not the educational sessions we provide. \nThis session is tailored to those diagnosed with or suspected of having Inclusion Body Myositis (IBM). Patients are welcome to include their spouse or care partner in these sessions. \nWe host this separate video support session because IBM is very different from the other forms of Myositis. IBM is a slowly progressive and degenerative muscle disease with no available treatment options\, outside of an exercise program. \nRegistration is required. After registration\, you will receive an email with details to join. See the link to register at the top of this page. \nYou do not have to turn your camera on and you will never be required to speak. \nCheck out all of our video support sessions\, and other support options. [/vc_column_text]\n\n\n    [vc_column_text css=””] \nSupport Session Guidelines\nWe don’t like to impose rules\, however\, to keep everyone safe please read over the policies below. \nSession Privacy\, Trust\, and Behavior\nTo keep everyone feeling safe\, here is a list of our general\, but important\, policies. \n\nAnything shared in the video support group session stays there! Just as in our closed online support groups\, we trust that you will follow this strict rule. No sharing of private discussions outside of the support session.\nWhen sharing\, we ask you to be mindful of time so everyone has a chance to share.\nIf you have something to add to the discussion\, we ask that you do not interrupt while someone is speaking. The hosts will announce at the start of the session how each session will run.\nAnything shared should be audience-appropriate. We will not tolerate hate speech\, bullying\, inappropriate comments\, or the promotion of any outside services\, products\, websites\, or other online links that are not related to our discussions.\n\nWe will NOT have or provide: \n\nA debate about science;\nA political discussion;\nA conversation about conspiracy theories;\nMedical advice (beyond what is listed as criteria to call your doctor).\n\nWhat we hope this video support session will be: \n\nA safe space to voice your experiences and ask questions among similarly situated people who understand;\nA place to get ideas for staying sane while practicing social distancing\, isolation\, or quarantine;\nA chance to get ideas for staying safe if you must continue participating in the outside world;\nAn opportunity to see that you are not alone.\n\nThe views and opinions of session Hosts\, Co-hosts\, and Volunteers are not that of Myositis Support and Understanding (MSU). [/vc_column_text]\n\n\n    [vc_column_text] \nHow do I join video support sessions?\nZoom is available for almost all devices including computers\, laptops\, smartphones\, and tablets. \nTo install Zoom on a computer/laptop: Visit the Downloads page on Zoom’s website and download/install the Zoom Client for Meetings. \nTo install Zoom on a device: Visit your App store and search for Zoom and install. \nThen\, visit our Events Calendar and register for the monthly support sessions that interest you. \nIf you need additional help\, we have Zoom help documents with more detail. \nWhy do I have to register?\nBecause of security concerns and to ensure we are able to better provide a safe space and control who joins the sessions we require registration. Register once to attend this monthly session. After registration\, you will receive an email with the details to join on Zoom\, which also includes a link to add it to your calendar.[/vc_column_text]\n\n			\n\n[/vc_column][/vc_row][vc_row padding_top=”0″ padding_bottom=”0″][vc_column][vc_message style=”square” icon_type=”fontawesome” icon_fontawesome=”fas fa-exclamation” css=””]Running late? That’s okay. Join us anyway! Video support sessions vary in length and number of attendees but are generally 90 minutes long\, so join us anytime.[/vc_message][/vc_column][/vc_row]
URL:https://understandingmyositis.org/event/ibm-patient-video-support-2/2024-08-30/
LOCATION:MSU Zoom Video Session\, Video session using Zoom
CATEGORIES:Video Support Sessions
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2024/01/Inclusion-Body-Myositis-Event-Graphic-1200-x-630-px-2.png
ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240829T130000
DTEND;TZID=America/New_York:20240829T143000
DTSTAMP:20260416T215528
CREATED:20240103T201105Z
LAST-MODIFIED:20250909T193238Z
UID:10001452-1724936400-1724941800@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-2-2/2024-08-29/
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:20240825T190000
DTEND;TZID=America/New_York:20240825T210000
DTSTAMP:20260416T215528
CREATED:20240103T201449Z
LAST-MODIFIED:20250909T193117Z
UID:10001598-1724612400-1724619600@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-2/2024-08-25/
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:20240822T130000
DTEND;TZID=America/New_York:20240822T143000
DTSTAMP:20260416T215528
CREATED:20240103T201105Z
LAST-MODIFIED:20250909T193238Z
UID:10001451-1724331600-1724337000@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-2-2/2024-08-22/
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:20240819T150000
DTEND;TZID=America/New_York:20240819T163000
DTSTAMP:20260416T215528
CREATED:20240117T151829Z
LAST-MODIFIED:20250909T193352Z
UID:10001202-1724079600-1724085000@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-2-2-2/2024-08-19/
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:20240819T140000
DTEND;TZID=America/New_York:20240819T150000
DTSTAMP:20260416T215528
CREATED:20240808T032033Z
LAST-MODIFIED:20240808T221527Z
UID:10001867-1724076000-1724079600@understandingmyositis.org
SUMMARY:Battling Brain Fog
DESCRIPTION:[vc_row][vc_column][vc_column_text css=””] Living Fully with Myositis: MSU’s #MyositisLife Initiative Series Presents… \nBattling Brain Fog\nThis informative session will focus on effective ways to manage cognitive fatigue and provide you with essential strategies and tools to regain control over daily responsibilities. \nDiscover functional supports that can help enhance your overall quality of life and empower you to navigate challenges with confidence! \nDon’t miss this opportunity to learn and connect with others facing similar struggles. Your journey to clarity and productivity starts here! [/vc_column_text][/vc_column][/vc_row][vc_row][vc_column] To register visit[vc_custom_heading text=”Meaghan Arnold” font_container=”tag:h5|text_align:left” css=””][/vc_column][/vc_row][vc_row][vc_column width=”1/2″][vc_single_image image=”41919″ img_size=”medium” css=””][/vc_column][vc_column width=”1/2″][vc_column_text css=””]-️ Hosted by Speech Swallowing and Neurological Rehabilitation (SSNR)\, a private practice in Tyler\, Texas\, this webinar will be led by Meaghan Arnold\, a dedicated medical speech-language pathologist and owner of SSNR. With a Bachelor of Science degree from The University of Arizona and a Master of Arts degree from The University of Texas at Austin\, Meaghan brings over eight years of experience in skilled nursing facilities\, home health\, and outpatient settings. \n-‍⚕️ Meaghan specializes in treating voice\, swallowing\, speech\, language\, cognition\, and memory deficits. She’s passionate about person-centered care and community education\, hosting two support groups and speaking at local events to advocate for her patients. Visit SSNR website at https://ssnrtx.com/[/vc_column_text][/vc_column][/vc_row]
URL:https://understandingmyositis.org/event/battling-brain-fog/
LOCATION:MSU Zoom Video Session\, Video session using Zoom
CATEGORIES:Video Session
ATTACH;FMTTYPE=image/jpeg:https://understandingmyositis.org/wp-content/uploads/2024/08/Battling-Brain-Fog-1-1.jpg
ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240818T190000
DTEND;TZID=America/New_York:20240818T210000
DTSTAMP:20260416T215528
CREATED:20240103T201449Z
LAST-MODIFIED:20250909T193117Z
UID:10001597-1724007600-1724014800@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-2/2024-08-18/
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
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