BEGIN:VCALENDAR VERSION:2.0 PRODID:-//Myositis Support and Understanding - ECPv6.17.5.1//NONSGML v1.0//EN CALSCALE:GREGORIAN METHOD:PUBLISH X-WR-CALNAME:Myositis Support and Understanding X-ORIGINAL-URL:https://understandingmyositis.org X-WR-CALDESC:Events for Myositis Support and Understanding REFRESH-INTERVAL;VALUE=DURATION:PT1H X-Robots-Tag:noindex X-PUBLISHED-TTL:PT1H BEGIN:VTIMEZONE TZID:America/New_York BEGIN:DAYLIGHT TZOFFSETFROM:-0500 TZOFFSETTO:-0400 TZNAME:EDT DTSTART:20240310T070000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0400 TZOFFSETTO:-0500 TZNAME:EST DTSTART:20241103T060000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:-0500 TZOFFSETTO:-0400 TZNAME:EDT DTSTART:20250309T070000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0400 TZOFFSETTO:-0500 TZNAME:EST DTSTART:20251102T060000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:-0500 TZOFFSETTO:-0400 TZNAME:EDT DTSTART:20260308T070000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0400 TZOFFSETTO:-0500 TZNAME:EST DTSTART:20261101T060000 END:STANDARD END:VTIMEZONE BEGIN:VEVENT DTSTART;TZID=America/New_York:20250505T190000 DTEND;TZID=America/New_York:20250505T210000 DTSTAMP:20250409T173800Z CREATED:20250409T173800Z LAST-MODIFIED:20250409T173800Z UID:10002055-1746471600-1746478800@understandingmyositis.org SUMMARY:Sexual Intimacy with Myositis\, "Exclusive for Women with Myositis Group" DESCRIPTION:[vc_row][vc_column][vc_column_text css=””] \nMonday\, May 5th on Zoom \n4 PM PT / 5 PM MT / 6 PM CT / 7 PM ET \nJoin us for an insightful webinar tailored specifically for the Women with Myositis group. Led by Noelle Benach\, a licensed psychotherapist and certified sex therapist\, this session will address the unique challenges and strategies for maintaining intimacy while living with myositis. \nDuring the webinar\, Noelle will explore how myositis impacts sexual health\, delving into both physical and emotional challenges such as fatigue\, pain\, and changes in libido. Participants will learn practical tips for adapting intimacy practices\, including effective communication with partners and strategies for energy management. Additionally\, the session will highlight the importance of self-care and mental health in fostering intimate relationships. \nThis interactive webinar will also feature a Q&A segment where attendees are encouraged to submit questions in advance. Noelle will provide thoughtful responses\, creating a supportive environment for sharing and learning. \nDon’t miss this incredible opportunity to learn and connect—register now! \n#SexualIntimacy #Myositis #Webinar #MentalHealth #WomenWithMyositis \n[/vc_column_text] Register To Attend[/vc_column][/vc_row][vc_row][vc_column width=”1/2″][vc_single_image image=”42738″ img_size=”large” add_caption=”yes” css=”” title=”Noelle Benach\, LCPC\, CST”][/vc_column][vc_column width=”1/2″][vc_column_text css=””]Noelle Benach\, LCPC\, CST (She/Her) is a Baltimore based Psychotherapist and AASECT Certified Sex Therapist. Noelle works with adult individuals\, couples and those in non-monogamous relationships to address concerns such as sexuality and desire\, body liberation\, LGBTQIA+ issues\, chronic illness concerns\, neurodivergence\, anxiety\, fertility issues\, and parenting stress.  \nNoelle is currently working towards her PhD in Clinical Sexology and is currently writing a book about how sexuality and pleasure can be a means of liberation for fat bodies.   \nWhen she isn’t working or studying\, you can find Noelle spending time with her spouse and pets\, baking up a fresh loaf of sourdough\, or planning her next DIY project. Noelle identifies herself as queer\, fat\, neurodivergent\, and chronically ill and believes those intersections of her identity positively influences her work with clients who have similar lived experiences. [/vc_column_text][/vc_column][/vc_row] URL:https://understandingmyositis.org/event/sexual-intimacy-with-myositis-exclusive-for-women-with-myositis-group/ LOCATION:MSU Zoom Video Session\, Video session using Zoom CATEGORIES:Video Support Sessions ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2025/04/Womens-group-for-myo-may-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:20250507T190000 DTEND;TZID=America/New_York:20250507T210000 DTSTAMP:20250910T221541Z CREATED:20240103T200832Z LAST-MODIFIED:20250910T221541Z UID:10001913-1746644400-1746651600@understandingmyositis.org SUMMARY:Wednesday Evening Myositis Support Group DESCRIPTION:[vc_row el_id=”details” padding_top=”20″ padding_bottom=”20″][vc_column][vc_column_text css=””] \nStarting at 7 PM ET\n(6 PM CT\, 5 PM MT\, 4 PM PT)\nClick the button below to register to attend. \n[/vc_column_text] REGISTER[vc_message style=”square” message_box_color=”warning” icon_type=”fontawesome” icon_fontawesome=”fas fa-star-of-life”]Register once to attend all monthly Wednesday evening myositis support sessions. After registration\, you will receive an email with the details to join. When new sessions are added or changed for some reason\, you will receive an email update.[/vc_message][/vc_column][/vc_row][vc_row][vc_column]\n\n \n \n \n Session Details \n \n \n \n Session Policies \n \n \n \n FAQ \n \n \n \n \n\n [vc_column_text css=””]Join fellow Myositis patients for a private\, real-time group video support session and share your challenges\, hopes\, fears\, circumstances\, ask questions and talk to others going through the same or similar situations\, including the emotional aspects of Myositis life\, with a focus on gratitude and living our best life with Myositis. \nThis session is tailored to anyone living with any of the types of myositis including Polymyositis (PM)\, Dermatomyositis (DM)\, Clinically Amyopathic Dermatomyositis (CADM)\, Antisynthetase Syndrome (ASyS)\, Immune-Mediated Necrotizing Myopathy (IMNM)\, Inclusion Body Myositis (IBM)\, adults with and parents of children with Juvenile Dermatomyositis (JDM)\, Nonspecific Myositis\, and Overlapping Myositis with other conditions such as with Mixed Connective Tissue Disease. \nRegistration is required. After registration\, you will receive an email with details to join. See the link to register at the top of this page. \nJoin with your camera on or off. Join to be a part of the discussion or listen in. \nCheck out all of our video support sessions\, and other support options. [/vc_column_text]\n\n\n [vc_column_text css=””] \nSupport Session Guidelines\nWe don’t like to impose rules\, however\, to keep everyone safe please read over the policies below. \nSession Privacy\, Trust\, and Behavior\nTo keep everyone feeling safe\, here is a list of our general\, but important\, policies. \n\nAnything shared in the video support group session stays there! Just as in our closed online support groups\, we trust that you will follow this strict rule. No sharing of private discussions outside of the video support session.\nWhen sharing\, we ask you to be mindful of time so everyone has a chance to share.\nIf you have something to add to the discussion\, we ask that you do not interrupt while someone is speaking. The hosts will announce at the start of the session how each session will run.\nAnything shared should be audience-appropriate. We will not tolerate hate speech\, bullying\, inappropriate comments or jokes\, or the promotion of any outside services\, products\, websites\, or other online links that are not related to our discussions.\n\nWe will NOT have or provide: \n\nA debate about science;\nA political discussion;\nA conversation about conspiracy theories;\nMedical advice (beyond what is listed as criteria to call your doctor).\n\nWhat we hope this video support session will be: \n\nA safe space to voice your experiences and ask questions among similarly situated people who understand;\nA place to get ideas for staying sane while practicing social distancing\, isolation\, or quarantine;\nA chance to get ideas for staying safe if you must continue participating in the outside world;\nAn opportunity to see that you are not alone.\n\nThe views and opinions of session Hosts\, Co-hosts\, and Volunteers are not that of Myositis Support and Understanding (MSU). [/vc_column_text]\n\n\n [vc_column_text] \nHow do I join video support sessions?\nZoom is available for almost all devices including computers\, laptops\, smartphones\, and tablets. \nTo install Zoom on a computer/laptop: Visit the Downloads page on Zoom’s website and download/install the Zoom Client for Meetings. \nTo install Zoom on a device: Visit your App store and search for Zoom and install. \nThen\, visit our Events Calendar and register for the monthly support sessions that interest you. \nIf you need additional help\, we have Zoom help documents with more detail. \nWhy do I have to register?\nBecause of security concerns and to ensure we are able to better provide a safe space and control who joins the sessions we require registration. Register once to attend this monthly session. After registration\, you will receive an email with the details to join on Zoom\, which also includes a link to add it to your calendar.[/vc_column_text]\n\n \n\n[/vc_column][/vc_row][vc_row padding_top=”0″ padding_bottom=”0″][vc_column][vc_message style=”square” icon_type=”fontawesome” icon_fontawesome=”fas fa-exclamation”]Running late? That’s okay. Join us anyway! Video support sessions vary in length and number of attendees but are generally 90 minutes long\, so join us anytime within the first hour.[/vc_message][/vc_column][/vc_row] URL:https://understandingmyositis.org/event/myositis-patient-video-support-2/2025-05-07/ LOCATION:MSU Zoom Video Session\, Video session using Zoom CATEGORIES:Video Support Sessions ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2024/01/MSU-Wednesday-Evening-Support-Event-IG-1200-x-630-px-4.png ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20250513T190000 DTEND;TZID=America/New_York:20250513T210000 DTSTAMP:20250909T190253Z CREATED:20250424T202510Z LAST-MODIFIED:20250909T190253Z UID:10002071-1747162800-1747170000@understandingmyositis.org SUMMARY:Bi-Monthly Virtual Support Group: Breathe Easy: Myositis Lung Support DESCRIPTION:[vc_row][vc_column]\n\n \n \nStarting at 7 PM Eastern time\n(6 PM CT\, 5 PM MT\, 4 PM PT) \n \n\n \n \n \n Virtual Support Details \n \n \n \n Virtual Support Group Policy \n \n \n \n FAQ \n \n \n \n \n\n [vc_column_text css=””] \nBi-Monthly Virtual Support Group: Breathe Easy: Myositis Lung Support\nWe’re thrilled to introduce “Breathe Easy\,” our ongoing support group dedicated to individuals with Myositis experiencing lung issues. Join us every other month for a virtual gathering providing connection and support. \nMeeting Details: \n\nWhen: Bi-monthly on second Tuesday of the Month\, 7 PM ET\nWhere: Zoom (register below)\n\nWhat You’ll Experience: This group offers a compassionate space to connect with others who understand the unique challenges of Myositis and lung complications. Share experiences\, gain insights\, and find strategies to manage your lung health while fostering a community of support and understanding. \nDiscussion Topics Include: \n\nLung health\nCoping strategies\nEmotional support\n\nWhether you’re facing daily challenges or seeking guidance\, you’re not alone. Everyone with Myositis and lung issues is encouraged to join. Your voice matters\, and together\, we can support one another in this safe and nurturing environment. \nJoin us to breathe easier and foster a sense of belonging—one meeting at a time.[/vc_column_text]\n\n\n [vc_column_text css=””] \nVirtual Support Session Guidelines\nWe don’t like to impose rules\, however\, to keep everyone safe please read over the policies below. \nSession Privacy\, Trust\, and Behavior\nTo keep everyone feeling safe\, here is a list of our general\, but important\, policies. \n\nAnything shared in the video support group session stays there! Just as in our closed online support groups\, we trust that you will follow this strict rule. No sharing of private discussions outside of the support session.\nWhen sharing\, we ask you to be mindful of time so everyone has a chance to share.\nIf you have something to add to the discussion\, we ask that you do not interrupt while someone is speaking. The hosts will announce at the start of the session how each session will run.\nAnything shared should be audience-appropriate. We will not tolerate hate speech\, bullying\, inappropriate comments\, or the promotion of any outside services\, products\, websites\, or other online links that are not related to our discussions.\n\nWe will NOT have or provide: \n\nA debate about science;\nA political discussion;\nA conversation about conspiracy theories;\nMedical advice (beyond what is listed as criteria to call your doctor).\n\nWhat we hope this video support session will be: \n\nA safe space to voice your experiences and ask questions among similarly situated people who understand;\nA place to get ideas for staying sane while practicing social distancing\, isolation\, or quarantine;\nA chance to get ideas for staying safe if you must continue participating in the outside world;\nAn opportunity to see that you are not alone.\n\nThe views and opinions of session Hosts\, Co-hosts\, and Volunteers are not that of Myositis Support and Understanding (MSU). [/vc_column_text]\n\n\n [vc_column_text css=””] \nHow do I join video support sessions?\nZoom is available for almost all devices including computers\, laptops\, smartphones\, and tablets. \nTo install Zoom on a computer/laptop: Visit the Downloads page on Zoom’s website and download/install the Zoom Client for Meetings. \nTo install Zoom on a device: Visit your App store and search for Zoom and install. \nThen\, visit our Events Calendar and register for the monthly support sessions that interest you. \nIf you need additional help\, we have Zoom help documents with more detail. \nWhy do I have to register?\nBecause of security concerns and to ensure we are able to better provide a safe space and control who joins the sessions we require registration. Register once to attend this monthly session. After registration\, you will receive an email with the details to join on Zoom\, which also includes a link to add it to your calendar.[/vc_column_text] To Register\n\n \n\n To Register[vc_message style=”square” message_box_color=”warning” icon_type=”fontawesome” icon_fontawesome=”fas fa-asterisk” css=””]Register once to attend all Breathe Easy 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] URL:https://understandingmyositis.org/event/bi-monthly-virtual-support-group-breathe-easy-myositis-lung-support/2025-05-13/ LOCATION:MSU Zoom Video Session\, Video session using Zoom CATEGORIES:Video Support Sessions ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2025/04/Breathe-1200-x-630-px-7.png ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20250517T140000 DTEND;TZID=America/New_York:20250517T160000 DTSTAMP:20250424T211042Z CREATED:20250424T210923Z LAST-MODIFIED:20250424T211042Z UID:10001815-1747490400-1747497600@understandingmyositis.org SUMMARY:International Myositis Patient Support DESCRIPTION:[vc_row][vc_column]\n\n \n \nStarting at 2 PM Eastern time\n(1 PM CT\, 12 PM MT\, 11 AM PT) \nMyositis Patients & Care Partners\, click the button below to register to attend. \n \n\n \n \n \n Session Details \n \n \n \n Session Policies \n \n \n \n FAQ \n \n \n \n \n\n [vc_column_text css=””] \nSpecial International Support Session: Home & Life Adaptations with Myositis\nWe are excited to invite our community to a unique and interactive session titled “Home & Life Adaptations with Myositis” on Saturday\, May 17th. This special support group aims to bring together individuals living with Myositis to share insights\, strategies\, and practical solutions for navigating daily life. \nWhat to Expect: \nThis session will be a collaborative space where participants can discuss the adaptations they’ve implemented in their homes and lives to make day-to-day activities easier and more manageable. We encourage everyone to share their personal tips and tricks\, whether it’s innovative gadgets they’ve discovered\, ergonomic designs that have transformed their spaces\, or effective methods for managing emotions and maintaining mental well-being. \nDiscussion Topics Will Include: \n\nErgonomic Home Design: What changes have you made to your living space?\nManaging Emotions: How do you cope with the emotional aspects of living with Myositis?\nSupport Networks: Share how building connections has impacted your journey.\nMobility Solutions: What tools or techniques do you use to navigate your home?\nHelpful Gadgets: Are there any devices or accessories that have simplified your daily tasks?\nHousehold Adjustments: What clever modifications have you made to enhance your comfort?\n\nThis is an invaluable opportunity to learn from one another\, discover new ways to enhance your quality of life\, and foster a deeper sense of community. \nDon’t miss out on this chance to share your experiences and gather new ideas that could make a significant difference in your daily life. Together\, we can empower one another and develop creative solutions that work for everyone! \nJoin us and be a part of the dialogue! \nCheck out all of our video support sessions\, and other support options. [/vc_column_text]\n\n\n Empty section. Edit page to add content here.\n\n\n [vc_column_text] \nHow do I join video support sessions?\nZoom is available for almost all devices including computers\, laptops\, smartphones\, and tablets. \nTo install Zoom on a computer/laptop: Visit the Downloads page on Zoom’s website and download/install the Zoom Client for Meetings. \nTo install Zoom on a device: Visit your App store and search for Zoom and install. \nThen\, visit our Events Calendar and register for the monthly support sessions that interest you. \nIf you need additional help\, we have Zoom help documents with more detail. \nWhy do I have to register?\nBecause of security concerns and to ensure we are able to better provide a safe space and control who joins the sessions we require registration. Register once to attend this monthly session. After registration\, you will receive an email with the details to join on Zoom\, which also includes a link to add it to your calendar.[/vc_column_text]\n\n \n\n To Register[vc_message style=”square” message_box_color=”warning” icon_type=”fontawesome” icon_fontawesome=”fas fa-asterisk” css=””]Register once to attend the International Saturday Patient Support After you register\, you will receive an email with the details to join. \nRegister again for an updated email from Zoom with the new sessions added and an option to add them to your calendar.[/vc_message][/vc_column][/vc_row][vc_row padding_top=”0″ padding_bottom=”0″][vc_column][vc_message style=”square” icon_type=”fontawesome” icon_fontawesome=”fas fa-exclamation” css=””]Running late? That’s okay. Join us anyway! Video support sessions vary in length and number of attendees but are generally 90 minutes long\, so join us anytime.[/vc_message][/vc_column][/vc_row] URL:https://understandingmyositis.org/event/international-myositis-video-support-2/ LOCATION:MSU Zoom Video Session\, Video session using Zoom CATEGORIES:Video Support Sessions ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2024/07/HomeLife-1200-x-630-px-2.png ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20250530T170000 DTEND;TZID=America/New_York:20250530T190000 DTSTAMP:20250909T181333Z CREATED:20240117T151337Z LAST-MODIFIED:20250909T181333Z UID:10001977-1748624400-1748631600@understandingmyositis.org SUMMARY:IBM Patient Virtual Support Group DESCRIPTION:[vc_row el_id=”details” padding_top=”20″ padding_bottom=”20″][vc_column][vc_column_text] \nStarting at 5 PM Eastern time\n(4 PM CT\, 3 PM MT\, 2 PM PT) \nIBM Patients\, click the button below to register to attend. \n[/vc_column_text] REGISTER[vc_message style=”square” message_box_color=”warning” icon_type=”fontawesome” icon_fontawesome=”fas fa-star-of-life” css=””]Register once to attend all IBM virtual support sessions. After registration\, you will receive an email with the details to join. Be sure to check your junk or spam email folders. \nRegister again for an updated email from Zoom that contains the dates for 2025 and provides a link to add them to your calendar.[/vc_message][/vc_column][/vc_row][vc_row][vc_column]\n\n \n \n \n Session Details \n \n \n \n Session Policies \n \n \n \n FAQ \n \n \n \n \n\n [vc_column_text css=””]Join fellow Inclusion Body Myositis patients for a private\, real-time group video support session and share your challenges\, hopes\, fears\, circumstances\, ask questions and talk to others going through the same or similar situations\, including the emotional aspects of myositis life with a focus on gratitude and living our best lives with IBM. \nSupport sessions are never recorded. These are private\, real-time video support sessions and not the educational sessions we provide. \nThis session is tailored to those diagnosed with or suspected of having Inclusion Body Myositis (IBM). Patients are welcome to include their spouse or care partner in these sessions. \nWe host this separate video support session because IBM is very different from the other forms of Myositis. IBM is a slowly progressive and degenerative muscle disease with no available treatment options\, outside of an exercise program. \nRegistration is required. After registration\, you will receive an email with details to join. See the link to register at the top of this page. \nYou do not have to turn your camera on and you will never be required to speak. \nCheck out all of our video support sessions\, and other support options. [/vc_column_text]\n\n\n [vc_column_text css=””] \nSupport Session Guidelines\nWe don’t like to impose rules\, however\, to keep everyone safe please read over the policies below. \nSession Privacy\, Trust\, and Behavior\nTo keep everyone feeling safe\, here is a list of our general\, but important\, policies. \n\nAnything shared in the video support group session stays there! Just as in our closed online support groups\, we trust that you will follow this strict rule. No sharing of private discussions outside of the support session.\nWhen sharing\, we ask you to be mindful of time so everyone has a chance to share.\nIf you have something to add to the discussion\, we ask that you do not interrupt while someone is speaking. The hosts will announce at the start of the session how each session will run.\nAnything shared should be audience-appropriate. We will not tolerate hate speech\, bullying\, inappropriate comments\, or the promotion of any outside services\, products\, websites\, or other online links that are not related to our discussions.\n\nWe will NOT have or provide: \n\nA debate about science;\nA political discussion;\nA conversation about conspiracy theories;\nMedical advice (beyond what is listed as criteria to call your doctor).\n\nWhat we hope this video support session will be: \n\nA safe space to voice your experiences and ask questions among similarly situated people who understand;\nA place to get ideas for staying sane while practicing social distancing\, isolation\, or quarantine;\nA chance to get ideas for staying safe if you must continue participating in the outside world;\nAn opportunity to see that you are not alone.\n\nThe views and opinions of session Hosts\, Co-hosts\, and Volunteers are not that of Myositis Support and Understanding (MSU). [/vc_column_text]\n\n\n [vc_column_text] \nHow do I join video support sessions?\nZoom is available for almost all devices including computers\, laptops\, smartphones\, and tablets. \nTo install Zoom on a computer/laptop: Visit the Downloads page on Zoom’s website and download/install the Zoom Client for Meetings. \nTo install Zoom on a device: Visit your App store and search for Zoom and install. \nThen\, visit our Events Calendar and register for the monthly support sessions that interest you. \nIf you need additional help\, we have Zoom help documents with more detail. \nWhy do I have to register?\nBecause of security concerns and to ensure we are able to better provide a safe space and control who joins the sessions we require registration. Register once to attend this monthly session. After registration\, you will receive an email with the details to join on Zoom\, which also includes a link to add it to your calendar.[/vc_column_text]\n\n \n\n[/vc_column][/vc_row][vc_row padding_top=”0″ padding_bottom=”0″][vc_column][vc_message style=”square” icon_type=”fontawesome” icon_fontawesome=”fas fa-exclamation” css=””]Running late? That’s okay. Join us anyway! Video support sessions vary in length and number of attendees but are generally 90 minutes long\, so join us anytime.[/vc_message][/vc_column][/vc_row] URL:https://understandingmyositis.org/event/ibm-patient-video-support-2/2025-05-30/ LOCATION:MSU Zoom Video Session\, Video session using Zoom CATEGORIES:Video Support Sessions ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2024/01/Inclusion-Body-Myositis-Event-Graphic-1200-x-630-px-2.png ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20250531T190000 DTEND;TZID=America/New_York:20250531T210000 DTSTAMP:20250909T182144Z CREATED:20240103T204605Z LAST-MODIFIED:20250909T182144Z UID:10001989-1748718000-1748725200@understandingmyositis.org SUMMARY:Necrotizing Myopathy Patient Video Support DESCRIPTION:[vc_row el_id=”details” padding_top=”20″ padding_bottom=”20″][vc_column][vc_column_text] \nStarting at 7 PM Eastern time\n(6 PM CT\, 5 PM MT\, 4 PM PT) \nIMNM / NAM Patients\, click the button below to register once to attend this and all future sessions. \n[/vc_column_text] REGISTER[/vc_column][/vc_row][vc_row][vc_column]\n\n \n \n \n Session Details \n \n \n \n Session Policies \n \n \n \n FAQ \n \n \n \n \n\n [vc_column_text css=””]Join fellow Immune-Mediated Necrotizing Myopathy patients for a private\, real-time group video support session and share your challenges\, hopes\, fears\, circumstances\, ask questions and talk to others going through the same or similar situations\, including the emotional aspects of Myositis life with a focus on gratitude and living our best lives. \nThis session is tailored to those diagnosed with Immune-Mediated Necrotizing Myopathy (IMNM)\, sometimes referred to as Necrotizing Autoimmune Myopathy (NAM). \nRegistration is required. After registration\, you will receive an email with details to join. See the link to register at the top of this page. \nYou do not have to turn your camera on and you will never be required to speak. \nCheck out all of our video support sessions\, and other support options. [/vc_column_text][vc_column_text]Monthly Necrotizing Myopathy session is held on the last Saturday of each month starting at:  \n7 PM Eastern Time \n6 PM Central Time \n5 PM Mountain Time \n4 PM Pacific Time[/vc_column_text]\n\n\n [vc_column_text css=””] \nSupport Session Guidelines\nWe don’t like to impose rules\, however\, to keep everyone safe please read over the policies below. \nSession Privacy\, Trust\, and Behavior\nTo keep everyone feeling safe\, here is a list of our general\, but important\, policies. \n\nAnything shared in the video support group session stays there! Just as in our closed online support groups\, we trust that you will follow this strict rule. No sharing of private discussions outside of the support session.\nWhen sharing\, we ask you to be mindful of time so everyone has a chance to share.\nIf you have something to add to the discussion\, we ask that you do not interrupt while someone is speaking. The hosts will announce at the start of the session how each session will run.\nAnything shared should be audience-appropriate. We will not tolerate hate speech\, bullying\, inappropriate comments\, or the promotion of any outside services\, products\, websites\, or other online links that are not related to our discussions.\n\nWe will NOT have or provide: \n\nA debate about science;\nA political discussion;\nA conversation about conspiracy theories;\nMedical advice (beyond what is listed as criteria to call your doctor).\n\nWhat we hope this video support session will be: \n\nA safe space to voice your experiences and ask questions among similarly situated people who understand;\nA place to get ideas for staying sane while practicing social distancing\, isolation\, or quarantine;\nA chance to get ideas for staying safe if you must continue participating in the outside world;\nAn opportunity to see that you are not alone.\n\nThe views and opinions of session Hosts\, Co-hosts\, and Volunteers are not that of Myositis Support and Understanding (MSU). [/vc_column_text]\n\n\n [vc_column_text] \nHow do I join video support sessions?\nZoom is available for almost all devices including computers\, laptops\, smartphones\, and tablets. \nTo install Zoom on a computer/laptop: Visit the Downloads page on Zoom’s website and download/install the Zoom Client for Meetings. \nTo install Zoom on a device: Visit your App store and search for Zoom and install. \nThen\, visit our Events Calendar and register for the monthly support sessions that interest you. \nIf you need additional help\, we have Zoom help documents with more detail. \nWhy do I have to register?\nBecause of security concerns and to ensure we are able to better provide a safe space and control who joins the sessions we require registration. Register once to attend this monthly session. After registration\, you will receive an email with the details to join on Zoom\, which also includes a link to add it to your calendar.[/vc_column_text]\n\n \n\n[/vc_column][/vc_row][vc_row padding_top=”0″ padding_bottom=”0″][vc_column][vc_message style=”square” icon_type=”fontawesome” icon_fontawesome=”fas fa-exclamation” css=””]Running late? That’s okay. Join us anyway! Video support sessions vary in length and number of attendees but are generally 90 minutes long\, so join us anytime.[/vc_message][/vc_column][/vc_row] URL:https://understandingmyositis.org/event/imnm-video-support-2/2025-05-31/ LOCATION:MSU Zoom Video Session\, Video session using Zoom CATEGORIES:Video Support Sessions ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2024/01/Necrotizing-Myopathy-Support-Event-Graphic-1200-x-630-px.png ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org END:VEVENT END:VCALENDAR