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DTSTART;TZID=America/New_York:20250520T160000
DTEND;TZID=America/New_York:20250520T173000
DTSTAMP:20260415T002253
CREATED:20250510T210050Z
LAST-MODIFIED:20250510T210050Z
UID:10002426-1747756800-1747762200@understandingmyositis.org
SUMMARY:What Brings You Joy?
DESCRIPTION:[vc_row][vc_column]\n\n	\n \nTuesday\, May 20th \n4 PM ET / 3 PM CT / 2 PM MT / 1 PM PT \n   [vc_custom_heading text=”What Brings You Joy?” font_container=”tag:h2|text_align:center|color:%232A416E” css=””][vc_column_text css=””]Join us for a heartfelt support session in celebration of Myositis Awareness Month. Hosted by acclaimed author Lisa Sniderman of The Grieving Project and Jessica Taylor\, Director of Volunteer & Support Operations for MSU\, this event marks the third year of this inspiring support group experience. \nThis year’s theme reminds us that your story matters\, and that you are the hero of your own journey. During this special session\, we’ll explore how joy can illuminate even the toughest moments and empower you to take control of your narrative. Through insightful conversations and interactive activities\, you’ll discover ways to find happiness and hope\, no matter where you are on your path. \nWhether you’re seeking to reignite your sense of purpose\, connect with others\, or simply celebrate the small moments of joy\, this supportive environment is here for you. \n✨ Remember\, your story matters. Be the hero of your own story — and let’s celebrate the joy that fuels your journey! ✨ \n#MyMyoStoryMatters #BeTheHero #JoyInEveryDay #MyositisAwareness #SupportAndHealing #CommunityEvent[/vc_column_text] To Register[/vc_column][/vc_row]
URL:https://understandingmyositis.org/event/what-brings-you-joy-2/
LOCATION:MSU Zoom Video Session\, Video session using Zoom
CATEGORIES:Video Session
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2025/05/What-Brings-You-Joy-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:20250519T130000
DTEND;TZID=America/New_York:20250519T143000
DTSTAMP:20260415T002253
CREATED:20250410T222950Z
LAST-MODIFIED:20250410T222950Z
UID:10002058-1747659600-1747665000@understandingmyositis.org
SUMMARY:Care Partner Burnout: Supporting Your Loved One While Taking Care of Yourself
DESCRIPTION:[vc_row][vc_column][vc_column_text css=””] \nMonday\, May 19th \n10 AM PT / 11 AM MT / 12 PM CT / 1 PM ET \nA fatigue-related health condition doesn’t only impact the life of the person who is ill; it often brings significant changes for their loved ones and caregivers as well. Navigating this adjustment can be challenging\, and it can be difficult to know how to best support your loved one while ensuring you also care for yourself.  \nJoin us for our insightful webinar\, “Care Partner Burnout\,” where we will increase your understanding of what life feels like for your loved one living with fatigue-related challenges. In this session\, you will learn how to effectively support them on their recovery journey while also prioritizing your own well-being.  \nWhat You Will Learn:  \n\nInsight into the experiences and emotions faced by those dealing with fatigue-related health conditions. \n\n\nEffective strategies for supporting your loved one without compromising your mental and physical health. \n\n\nPractical tips for managing caregiver burnout and establishing boundaries. \n\n\nThe importance of self-care and its role in sustaining your ability to support others.\n\nDon’t miss this opportunity to gain valuable insights and tools to support both your loved one and yourself. Register now to secure your spot! [/vc_column_text] Register To Attend[vc_row_inner][vc_column_inner width=”1/2″][vc_single_image image=”41855″ img_size=”large” add_caption=”yes” css=”” title=”Guest Speaker Pamela Rose”][/vc_column_inner][vc_column_inner width=”1/2″][vc_column_text css=””]“Based in the UK\, Pamela Rose is a Fatigue Coach supporting people around the world to better manage their fatigue-related challenges. She provides very real and practical guidance to her clients linked to behaviors’ that will start to make a noticeable difference straightaway.  A key part of Pamela’s approach is ‘pacing’ or ‘energy management’ – helping clients achieve the life they have to live and want to live – whilst managing their health journeys.” [/vc_column_text] Pamela Rose Website[/vc_column_inner][/vc_row_inner][/vc_column][/vc_row]
URL:https://understandingmyositis.org/event/care-partner-burnout-supporting-your-loved-one-while-taking-care-of-yourself/
LOCATION:MSU Zoom Video Session\, Video session using Zoom
CATEGORIES:Video Session
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2025/04/Care-Partner-Burnout-1200-x-630-px-3.png
ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250517T140000
DTEND;TZID=America/New_York:20250517T160000
DTSTAMP:20260415T002253
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:20250513T190000
DTEND;TZID=America/New_York:20250513T210000
DTSTAMP:20260415T002253
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:20250510T140000
DTEND;TZID=America/New_York:20250510T153000
DTSTAMP:20260415T002253
CREATED:20250409T175347Z
LAST-MODIFIED:20250409T175347Z
UID:10002056-1746885600-1746891000@understandingmyositis.org
SUMMARY:The Unseen Grief: Recognizing & Healing from Secondary Loss Workshop
DESCRIPTION:[vc_row][vc_column][vc_column_text css=””] \nSaturday\, May 10th \n11 AM PT / 12 PM MT / 1 PM CT / 2 PM ET \nJoin us for an interactive workshop\, “The Unseen Grief: Recognizing and Healing from Secondary Loss\,” specifically designed for both individuals affected by myositis and their care partners. This collaborative session will delve into the often-overlooked aspects of grief experienced by those living with this condition\, focusing on the loss of identity\, capabilities\, and the life one once knew. \nDr. Romano will facilitate discussions to help participants\, both patients and care partners\, recognize the subtle yet significant losses that accompany myositis. He will provide valuable strategies and tools to navigate the associated emotional challenges\, fostering an environment of open dialogue and group exploration. \nAn engaging writing reflection activity will be included\, encouraging attendees to share their personal experiences and insights. Participants will have the opportunity to explore their feelings\, uncover paths to healing\, and connect with others who share similar journeys in a supportive atmosphere. \nEngage with Dr. Romano in this dynamic workshop as we collectively explore the intricate emotional landscape of secondary loss and discover pathways to healing. This is an invaluable opportunity for self-reflection\, connection\, and growth for both individuals affected by myositis and their care partners. Don’t miss out on this chance to participate![/vc_column_text] Register To Attend[vc_row_inner][vc_column_inner width=”1/2″][vc_single_image image=”42752″ img_size=”large” add_caption=”yes” css=”” title=”Dr. Pablo Romano”][/vc_column_inner][vc_column_inner width=”1/2″][vc_column_text css=””]Pablo is a third-year psychiatry resident at Columbia University and will be chief resident for the 2025-2026 academic year. Prior to attending Columbia\, he received a bachelor’s degree in Cognitive Science from Occidental College\, completed a Fulbright fellowship in Argentina\, and obtained a medical degree from Stanford University’s School of Medicine. As a medical student\, he researched the impact of storytelling interventions on medical student wellness and was co-chair of the Stanford Latino Medical Student Association. As a resident\, Pablo has pursued additional psychotherapy training\, led medical storytelling sessions at CUMC\, co-led a narrative medicine group with a focus on bereavement\, and co-chaired the Wellness Committee. Aside from his clinical work\, Pablo has published a number of creative pieces related to grief\, immigration\, and medicine; his work can be found at the Nocturnists\, the Intima\, and elsewhere. He plans to pursue training in palliative care and clinical ethics.   [/vc_column_text][/vc_column_inner][/vc_row_inner][/vc_column][/vc_row]
URL:https://understandingmyositis.org/event/the-unseen-grief-recognizing-healing-from-secondary-loss-workshop/
LOCATION:MSU Zoom Video Session\, Video session using Zoom
CATEGORIES:Video Session
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2025/04/Grief-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:20250507T190000
DTEND;TZID=America/New_York:20250507T210000
DTSTAMP:20260415T002253
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:20250505T190000
DTEND;TZID=America/New_York:20250505T210000
DTSTAMP:20260415T002253
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:20250428T180000
DTEND;TZID=America/New_York:20250428T190000
DTSTAMP:20260415T002253
CREATED:20250318T185722Z
LAST-MODIFIED:20250331T225539Z
UID:10002043-1745863200-1745866800@understandingmyositis.org
SUMMARY:Webinar: Automotive Mobility Solutions - Features & Benefits
DESCRIPTION:[vc_row][vc_column][vc_column_text css=””] \nMonday\, April 28th on Zoom\n3 PM PT / 4 PM MT / 5 PM CT / 6 PM ET\nJoin us for an insightful webinar focused on exploring the diverse world of automotive mobility solutions. This session aims to educate attendees about the various types of mobility aids available\, including driving aids\, hand controls\, scooter lifts\, assist seating\, and wheelchair-accessible vehicles. \nWhat You Will Learn: \nComprehensive Overview: Understand the range of automotive mobility solutions available to enhance independence and ease of transportation. \nNeeds Analysis: Learn about our robust needs analysis process\, designed to help individuals determine the most suitable solutions for their unique mobility requirements. \nFinancing Options: Explore the financing options available to make these mobility solutions accessible to a broader audience. \nSpeaker: Monique McGivney Monique McGivney\, a seasoned expert in the mobility industry\, has over 20 years of experience and a deep passion for assisting the mobility community. Based in Arizona\, Monique dedicates her time to working closely with customers\, helping them find optimal mobility solutions suited to their needs and budgets. She is also committed to educating both customers and allied health professionals about the wide array of mobility options available. Her extensive knowledge and dedication make her a valuable resource for anyone interested in learning more about automotive mobility solutions. \nWhether you’re a potential user\, caregiver\, or health professional\, this webinar offers valuable insights to enhance your understanding of mobility solutions and their benefits. \nDon’t miss this opportunity to expand your knowledge and make informed decisions about automotive mobility solutions. Register now to secure your spot and join us for this enlightening session![/vc_column_text] Register[/vc_column][/vc_row]
URL:https://understandingmyositis.org/event/webinar-automotive-mobility-solutions-features-benefits/
LOCATION:MSU Zoom Video Session\, Video session using Zoom
CATEGORIES:Video Session
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2025/03/Webinar-1.png
ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250426T190000
DTEND;TZID=America/New_York:20250426T210000
DTSTAMP:20260415T002253
CREATED:20240103T204605Z
LAST-MODIFIED:20250909T182144Z
UID:10001988-1745694000-1745701200@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-2/2025-04-26/
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:20250425T170000
DTEND;TZID=America/New_York:20250425T190000
DTSTAMP:20260415T002253
CREATED:20240117T151337Z
LAST-MODIFIED:20250909T181333Z
UID:10001976-1745600400-1745607600@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-2/2025-04-25/
LOCATION:MSU Zoom Video Session\, Video session using Zoom
CATEGORIES:Video Support Sessions
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/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:20250419T140000
DTEND;TZID=America/New_York:20250419T160000
DTSTAMP:20260415T002253
CREATED:20240718T000208Z
LAST-MODIFIED:20250910T182106Z
UID:10001814-1745071200-1745078400@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/2025-04-19/
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:20250416T190000
DTEND;TZID=America/New_York:20250416T203000
DTSTAMP:20260415T002253
CREATED:20240904T204041Z
LAST-MODIFIED:20250909T190925Z
UID:10002050-1744830000-1744835400@understandingmyositis.org
SUMMARY:Myositis Cancer Support
DESCRIPTION:[vc_row][vc_column][vc_column_text css=””] \nStarting at 7 PM Eastern time\n(6 PM CT\, 5 PM MT\, 4 PM PT) \nMyositis 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-asterisk” css=””]Register once to attend the Myositis Cancer 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]\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=””]We are excited to announce a special support group dedicated to Myositis patients who are currently battling cancer or are survivors. This new initiative aims to create a safe and nurturing space where individuals can share their experiences\, find comfort in community\, and share resources that empower their journey. \nThis support group will not only focus on the challenges faced by those navigating life with both Myositis and cancer\, but also foster connections that uplift and inspire. \nYour journey matters\, and we believe that together we can cultivate resilience\, strength\, and hope. Whether you’re seeking advice\, encouragement\, or simply a listening ear\, this group is here for you. \nPlease mark your calendars and join us in building a supportive community where every voice is valued. \nTogether\, we can embrace the path ahead with courage and compassion.[/vc_column_text]\n\n\n    [vc_column_text css=””] \nSupport Session Guidelines\nWe don’t like to impose rules\, however\, to keep everyone safe please read over the policies below. \nSession Privacy\, Trust\, and Behavior\nTo keep everyone feeling safe\, here is a list of our general\, but important\, policies. \n\nAnything shared in the video support group session stays there! Just as in our closed online support groups\, we trust that you will follow this strict rule. No sharing of private discussions outside of the support session.\nWhen sharing\, we ask you to be mindful of time so everyone has a chance to share.\nIf you have something to add to the discussion\, we ask that you do not interrupt while someone is speaking. The hosts will announce at the start of the session how each session will run.\nAnything shared should be audience-appropriate. We will not tolerate hate speech\, bullying\, inappropriate comments\, or the promotion of any outside services\, products\, websites\, or other online links that are not related to our discussions.\n\nWe will NOT have or provide:\n\nA debate about science;\nA political discussion;\nA conversation about conspiracy theories;\nMedical advice (beyond what is listed as criteria to call your doctor).\n\nWhat we hope this video support session will be: \n\nA safe space to voice your experiences and ask questions among similarly situated people who understand;\nA place to get ideas for staying sane while practicing social distancing\, isolation\, or quarantine;\nA chance to get ideas for staying safe if you must continue participating in the outside world;\nAn opportunity to see that you are not alone.\n\nThe views and opinions of session Hosts\, Co-hosts\, and Volunteers are not that of Myositis Support and Understanding (MSU). [/vc_column_text]\n\n\n    [vc_column_text css=””] \nHow do I join video support sessions?\nZoom is available for almost all devices including computers\, laptops\, smartphones\, and tablets. \nTo install Zoom on a computer/laptop: Visit the Downloads page on Zoom’s website and download/install the Zoom Client for Meetings. \nTo install Zoom on a device: Visit your App store and search for Zoom and install. \nThen\, visit our Events Calendar and register for the monthly support sessions that interest you. \nIf you need additional help\, we have Zoom help documents with more detail. \nWhy do I have to register?\nBecause of security concerns and to ensure we are able to better provide a safe space and control who joins the sessions we require registration. Register once to attend this monthly session. After registration\, you will receive an email with the details to join on Zoom\, which also includes a link to add it to your calendar.[/vc_column_text]\n\n			\n\n[vc_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 within the first hour.[/vc_message][/vc_column][/vc_row]
URL:https://understandingmyositis.org/event/myositis-cancer-support/2025-04-16/
LOCATION:MSU Zoom Video Session\, Video session using Zoom
CATEGORIES:Video Support Sessions
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2024/09/Myositis-Cancer-Support-Group-Graphic-9.png
ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250415T190000
DTEND;TZID=America/New_York:20250415T203000
DTSTAMP:20260415T002253
CREATED:20250327T214912Z
LAST-MODIFIED:20250415T185452Z
UID:10002054-1744743600-1744749000@understandingmyositis.org
SUMMARY:Standards of Care for Home Infusion
DESCRIPTION:[vc_row][vc_column][vc_column_text css=””]Date: April 15th\nTime: 7 PM ET / 6 PM CT / 5 PM MT / 4 PM PT\nPlatform: Zoom\nHosted by: IV Solutions Rx \nJoin us for an informative webinar on Standards of Care for Home Infusion\, designed to equip patients and caregivers with vital knowledge about home infusion therapy. This session will cover a comprehensive range of topics\, including: \n\nHow to Select a Pharmacy: Learn the factors to consider when choosing a pharmacy for home infusion.\nExpectations from Home Infusion Companies and Nurses: Understand what to anticipate from your infusion providers and nursing staff.\nInfusion Suite vs. Home: Explore the differences between receiving treatment in an infusion suite versus at home.\nProduct Selection and Copay Cards: Gain insights on how to navigate product options and potential financial assistance.\nInsurance Formularies: Learn about how insurance plans affect access to medications and treatments.\nAccreditations & Professional Certifications: Understand the importance of choosing accredited providers for your home infusion needs.\nSupplies: Discover what supplies you’ll need for effective home infusion care.\nWhat to Expect During Your Infusion and Outcomes: Get familiar with the infusion process and the expected results.\nBeing an Informed Consumer: Empower yourself with knowledge to advocate for the best care.\n\n[/vc_column_text][vc_row_inner][vc_column_inner] Register To Attend[/vc_column_inner][vc_column_inner][/vc_column_inner][vc_column_inner][vc_custom_heading text=”Guest Speakers” font_container=”tag:h2|text_align:center” css=””][/vc_column_inner][vc_column_inner width=”1/2″][vc_single_image image=”42690″ img_size=”medium” css=””][/vc_column_inner][vc_column_inner width=”1/2″][vc_column_text css=””] \nVicky Starr\, RN\, IgCN\n\nDirector of Clinical Services & COO\n\n\nVicky has been a nurse for over 35 years with a focus in chronic disease states requiring infusion for the last 20 years.  She is a certified IG nurse and is Director of Clinical Services and the COO of IV Solutions Rx. \n\n[/vc_column_text][/vc_column_inner][/vc_row_inner][vc_row_inner][vc_column_inner width=”1/2″][vc_single_image image=”42687″ img_size=”medium” css=””][/vc_column_inner][vc_column_inner width=”1/2″][vc_column_text css=””] \nMichelle Vogel\, MPA\nVice President of Patient Advocacy\nIn 2022\, Michelle joined IV Solutions RX as Vice President of Patient Advocacy to continue her outreach with patients ensuring that no patient goes without their lifesaving therapy in an affordable site of care. \nMichelle has years of experience testifying before Congress\, federal agencies\, and state legislatures. She is also a prominent speaker on topics such as Medicare reimbursement\, patient copay assistance programs\, the economics of the plasma industry\, health insurance reform\, navigating health insurance\, and patient advocacy. Michelle’s hobby is assisting patients to successfully navigate their health insurance policies to ensure that they get covered for their prescribed medications and other services.[/vc_column_text][/vc_column_inner][/vc_row_inner][/vc_column][/vc_row]
URL:https://understandingmyositis.org/event/standards-of-care-for-home-infusion/
LOCATION:MSU Zoom Video Session\, Video session using Zoom
CATEGORIES:Video Session
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2025/03/Heading-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:20250407T190000
DTEND;TZID=America/New_York:20250407T210000
DTSTAMP:20260415T002253
CREATED:20240925T184341Z
LAST-MODIFIED:20250910T222248Z
UID:10001672-1744052400-1744059600@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 css=””]Join fellow women with Myositis for a private\, real-time group video support session and share your challenges\, hopes\, fears\, circumstances\, and talk to others going through the same or similar situations\, including the emotional aspects of myositis life with a focus on gratitude. \nSupport sessions are never recorded. These are private\, real-time video support sessions and not the educational sessions we provide. \nThis session is open to all women with any type of Myositis. \nRegistration is required. After registration\, you will receive an email with details to join. See the link to register at the top of this page. \nYou do not have to turn your camera on and you will never be required to speak. \nCheck out all of our video support sessions\, and other support options. [/vc_column_text][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 css=””] \nSupport Session Guidelines\nWe don’t like to impose rules\, however\, to keep everyone safe please read over the policies below. \nSession Privacy\, Trust\, and Behavior\nTo keep everyone feeling safe\, here is a list of our general\, but important\, policies. \n\nAnything shared in the video support group session stays there! Just as in our closed online support groups\, we trust that you will follow this strict rule. No sharing of private discussions outside of the video support session.\nWhen sharing\, we ask you to be mindful of time so that everyone has a chance to share.\nIf you have something to add to the discussion\, we ask that you do not interrupt while someone is speaking. The hosts will announce at the start of the session how each session will run.\nAnything shared should be audience-appropriate. We will not tolerate hate speech\, bullying\, inappropriate comments or jokes\, or the promotion of any outside services\, products\, websites\, or other online links that are not related to our discussions.\n\nWe will NOT have or provide: \n\nA debate about science;\nA political discussion;\nA conversation about conspiracy theories;\nMedical advice (beyond what is listed as criteria to call your doctor).\n\nWhat we hope this video support session will be: \n\nA safe space to voice your experiences and ask questions among similarly situated people who understand;\nA place to get ideas for staying sane while practicing social distancing\, isolation\, or quarantine;\nA chance to get ideas for staying safe if you must continue participating in the outside world;\nAn opportunity to see that you are not alone.\n\nThe views and opinions of session Hosts\, Co-hosts\, and Volunteers are not that of Myositis Support and Understanding (MSU). [/vc_column_text]\n\n\n    [vc_column_text] \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/myositislife-womens-support-group-2-2-2/2025-04-07/
LOCATION:MSU Zoom Video Session\, Video session using Zoom
CATEGORIES:Video Support Sessions
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2024/09/MSU-Women-Event-FB-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:20250402T190000
DTEND;TZID=America/New_York:20250402T210000
DTSTAMP:20260415T002253
CREATED:20240103T200832Z
LAST-MODIFIED:20250910T221541Z
UID:10001912-1743620400-1743627600@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-2/2025-04-02/
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:20250329T190000
DTEND;TZID=America/New_York:20250329T210000
DTSTAMP:20260415T002253
CREATED:20240103T204605Z
LAST-MODIFIED:20250909T182144Z
UID:10001987-1743274800-1743282000@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-2/2025-03-29/
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:20250328T170000
DTEND;TZID=America/New_York:20250328T190000
DTSTAMP:20260415T002253
CREATED:20240117T151337Z
LAST-MODIFIED:20250909T181333Z
UID:10001975-1743181200-1743188400@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-2/2025-03-28/
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/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:20250325T180000
DTEND;TZID=America/New_York:20250325T193000
DTSTAMP:20260415T002253
CREATED:20250225T235644Z
LAST-MODIFIED:20250226T000041Z
UID:10002042-1742925600-1742931000@understandingmyositis.org
SUMMARY:Shifting Your Mindset
DESCRIPTION:[vc_row][vc_column][vc_cta h2=”Shifting Your Mindset March 25th\, 2025″ txt_align=”center” add_button=”bottom” add_icon=”top” i_icon_fontawesome=”far fa-calendar-alt” css=””] \n\n6 PM ET / 5 PM CT / 4 PM MT / 3 PM PT\n[/vc_cta][vc_column_text css=””] \nLiving Fully with Myositis: MSU’s #MyositisLife Initiative Series Presents: Our New 7-Part Series: Shifting Your Mindset!\nThis empowering Shifting Your Mindset series\, designed specifically for those living with Myositis. Over the last seven months\, we have embarked 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_row_inner][vc_column_inner width=”1/2″] Register to Join on Zoom[/vc_column_inner][vc_column_inner width=”1/2″] Watch Past Episodes[/vc_column_inner][/vc_row_inner][/vc_column][/vc_row]
URL:https://understandingmyositis.org/event/shifting-your-mindset-2/
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:20250315T140000
DTEND;TZID=America/New_York:20250315T160000
DTSTAMP:20260415T002253
CREATED:20240718T000208Z
LAST-MODIFIED:20250910T182106Z
UID:10001813-1742047200-1742054400@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/2025-03-15/
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:20250305T190000
DTEND;TZID=America/New_York:20250305T210000
DTSTAMP:20260415T002253
CREATED:20240103T200832Z
LAST-MODIFIED:20250910T221541Z
UID:10001911-1741201200-1741208400@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-2/2025-03-05/
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:20250303T190000
DTEND;TZID=America/New_York:20250303T210000
DTSTAMP:20260415T002253
CREATED:20240925T184341Z
LAST-MODIFIED:20250910T222248Z
UID:10001671-1741028400-1741035600@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 css=””]Join fellow women with Myositis for a private\, real-time group video support session and share your challenges\, hopes\, fears\, circumstances\, and talk to others going through the same or similar situations\, including the emotional aspects of myositis life with a focus on gratitude. \nSupport sessions are never recorded. These are private\, real-time video support sessions and not the educational sessions we provide. \nThis session is open to all women with any type of Myositis. \nRegistration is required. After registration\, you will receive an email with details to join. See the link to register at the top of this page. \nYou do not have to turn your camera on and you will never be required to speak. \nCheck out all of our video support sessions\, and other support options. [/vc_column_text][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 css=””] \nSupport Session Guidelines\nWe don’t like to impose rules\, however\, to keep everyone safe please read over the policies below. \nSession Privacy\, Trust\, and Behavior\nTo keep everyone feeling safe\, here is a list of our general\, but important\, policies. \n\nAnything shared in the video support group session stays there! Just as in our closed online support groups\, we trust that you will follow this strict rule. No sharing of private discussions outside of the video support session.\nWhen sharing\, we ask you to be mindful of time so that everyone has a chance to share.\nIf you have something to add to the discussion\, we ask that you do not interrupt while someone is speaking. The hosts will announce at the start of the session how each session will run.\nAnything shared should be audience-appropriate. We will not tolerate hate speech\, bullying\, inappropriate comments or jokes\, or the promotion of any outside services\, products\, websites\, or other online links that are not related to our discussions.\n\nWe will NOT have or provide: \n\nA debate about science;\nA political discussion;\nA conversation about conspiracy theories;\nMedical advice (beyond what is listed as criteria to call your doctor).\n\nWhat we hope this video support session will be: \n\nA safe space to voice your experiences and ask questions among similarly situated people who understand;\nA place to get ideas for staying sane while practicing social distancing\, isolation\, or quarantine;\nA chance to get ideas for staying safe if you must continue participating in the outside world;\nAn opportunity to see that you are not alone.\n\nThe views and opinions of session Hosts\, Co-hosts\, and Volunteers are not that of Myositis Support and Understanding (MSU). [/vc_column_text]\n\n\n    [vc_column_text] \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/myositislife-womens-support-group-2-2-2/2025-03-03/
LOCATION:MSU Zoom Video Session\, Video session using Zoom
CATEGORIES:Video Support Sessions
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2024/09/MSU-Women-Event-FB-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:20250228T170000
DTEND;TZID=America/New_York:20250228T190000
DTSTAMP:20260415T002253
CREATED:20240117T151337Z
LAST-MODIFIED:20250909T181333Z
UID:10001974-1740762000-1740769200@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-2/2025-02-28/
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/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:20250225T180000
DTEND;TZID=America/New_York:20250225T190000
DTSTAMP:20260415T002253
CREATED:20240904T161008Z
LAST-MODIFIED:20241231T180233Z
UID:10001887-1740506400-1740510000@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/2025-02-25/
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:20250224T140000
DTEND;TZID=America/New_York:20250224T150000
DTSTAMP:20260415T002253
CREATED:20250208T010452Z
LAST-MODIFIED:20250208T010452Z
UID:10002035-1740405600-1740409200@understandingmyositis.org
SUMMARY:Managing Your Expectations with Exercise and Movement by Kourage Health
DESCRIPTION:[vc_row][vc_column][vc_column_text css=””]Join Kourage Health and MSU for an enlightening webinar on Monday\, February 24th: “Managing Expectations with Movement & Exercise.” \nDiscover how to approach exercise with the right mindset. We’ll emphasize that progress isn’t an overnight fix but a journey requiring consistency and repetition. \nLearn the importance of maintenance and setting realistic expectations\, whether you’re a beginner\, intermediate\, or advanced in your exercise routine. Don’t miss this opportunity to gain valuable insights and enhance your fitness journey. \nDate: February 24th\, on Zoom \nTime: 11 AM PT / 12 PM MT / 1 PM CT / 2 PM ET \nMark your calendar and join us\, by registering below\, for an inspiring session that will get you moving! See you there![/vc_column_text] Register To Attend[/vc_column][/vc_row]
URL:https://understandingmyositis.org/event/managing-your-expectations-with-exercise-and-movement/
LOCATION:MSU Zoom Video Session\, Video session using Zoom
CATEGORIES:Video Session
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2025/02/Kourage-webinar-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:20250222T190000
DTEND;TZID=America/New_York:20250222T210000
DTSTAMP:20260415T002253
CREATED:20240103T204605Z
LAST-MODIFIED:20250909T182144Z
UID:10001986-1740250800-1740258000@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-2/2025-02-22/
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:20250217T140000
DTEND;TZID=America/New_York:20250217T150000
DTSTAMP:20260415T002253
CREATED:20250208T004535Z
LAST-MODIFIED:20250208T004535Z
UID:10002034-1739800800-1739804400@understandingmyositis.org
SUMMARY:Meet MSU's New Executive Director - Elisa Glass
DESCRIPTION:[vc_row][vc_column][vc_column_text css=””]Join us on February 17th for a special introduction to our first-ever Executive Director\, Elisa Glass! \nGet to know Elisa and hear about her vision for the future of Myositis Support and Understanding (MSU). This is a fantastic opportunity for our community to connect and share ideas. \nDate: February 17\, 2025 \nTime: 11 AM PT / 12 PM MT / 1 PM CT/ 2 PM ET \nDon’t miss this chance to welcome Elisa into our MSU family and engage in meaningful discussions about advancing our mission. Whether you’re local or joining us from across the globe\, your presence and voice matter! \nMark your calendar and join us\, by registering below\, for an inspiring session! Let’s make this a memorable event together. \n#MeetElisa #MSU #MyositisCommunity #MyositisSupport #WelcomeElisa[/vc_column_text] Register To Attend[/vc_column][/vc_row]
URL:https://understandingmyositis.org/event/meet-msus-new-executive-director/
LOCATION:MSU Zoom Video Session\, Video session using Zoom
CATEGORIES:Video Session
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2025/02/Meet-our-new-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:20250215T140000
DTEND;TZID=America/New_York:20250215T160000
DTSTAMP:20260415T002253
CREATED:20240718T000208Z
LAST-MODIFIED:20250910T182106Z
UID:10001812-1739628000-1739635200@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/2025-02-15/
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:20250205T190000
DTEND;TZID=America/New_York:20250205T210000
DTSTAMP:20260415T002253
CREATED:20240103T200832Z
LAST-MODIFIED:20250910T221541Z
UID:10001910-1738782000-1738789200@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-2/2025-02-05/
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:20250203T190000
DTEND;TZID=America/New_York:20250203T210000
DTSTAMP:20260415T002253
CREATED:20240925T184341Z
LAST-MODIFIED:20250910T222248Z
UID:10001670-1738609200-1738616400@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 css=””]Join fellow women with Myositis for a private\, real-time group video support session and share your challenges\, hopes\, fears\, circumstances\, and talk to others going through the same or similar situations\, including the emotional aspects of myositis life with a focus on gratitude. \nSupport sessions are never recorded. These are private\, real-time video support sessions and not the educational sessions we provide. \nThis session is open to all women with any type of Myositis. \nRegistration is required. After registration\, you will receive an email with details to join. See the link to register at the top of this page. \nYou do not have to turn your camera on and you will never be required to speak. \nCheck out all of our video support sessions\, and other support options. [/vc_column_text][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 css=””] \nSupport Session Guidelines\nWe don’t like to impose rules\, however\, to keep everyone safe please read over the policies below. \nSession Privacy\, Trust\, and Behavior\nTo keep everyone feeling safe\, here is a list of our general\, but important\, policies. \n\nAnything shared in the video support group session stays there! Just as in our closed online support groups\, we trust that you will follow this strict rule. No sharing of private discussions outside of the video support session.\nWhen sharing\, we ask you to be mindful of time so that everyone has a chance to share.\nIf you have something to add to the discussion\, we ask that you do not interrupt while someone is speaking. The hosts will announce at the start of the session how each session will run.\nAnything shared should be audience-appropriate. We will not tolerate hate speech\, bullying\, inappropriate comments or jokes\, or the promotion of any outside services\, products\, websites\, or other online links that are not related to our discussions.\n\nWe will NOT have or provide: \n\nA debate about science;\nA political discussion;\nA conversation about conspiracy theories;\nMedical advice (beyond what is listed as criteria to call your doctor).\n\nWhat we hope this video support session will be: \n\nA safe space to voice your experiences and ask questions among similarly situated people who understand;\nA place to get ideas for staying sane while practicing social distancing\, isolation\, or quarantine;\nA chance to get ideas for staying safe if you must continue participating in the outside world;\nAn opportunity to see that you are not alone.\n\nThe views and opinions of session Hosts\, Co-hosts\, and Volunteers are not that of Myositis Support and Understanding (MSU). [/vc_column_text]\n\n\n    [vc_column_text] \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/myositislife-womens-support-group-2-2-2/2025-02-03/
LOCATION:MSU Zoom Video Session\, Video session using Zoom
CATEGORIES:Video Support Sessions
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2024/09/MSU-Women-Event-FB-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:20250131T170000
DTEND;TZID=America/New_York:20250131T190000
DTSTAMP:20260415T002253
CREATED:20240117T151337Z
LAST-MODIFIED:20250909T181333Z
UID:10001973-1738342800-1738350000@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-2/2025-01-31/
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/Inclusion-Body-Myositis-Event-Graphic-1200-x-630-px-2.png
ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org
END:VEVENT
END:VCALENDAR