BEGIN:VCALENDAR VERSION:2.0 PRODID:-//Myositis Support and Understanding - ECPv6.15.17//NONSGML v1.0//EN CALSCALE:GREGORIAN METHOD:PUBLISH X-ORIGINAL-URL:https://understandingmyositis.org X-WR-CALDESC:Events for Myositis Support and Understanding REFRESH-INTERVAL;VALUE=DURATION:PT1H X-Robots-Tag:noindex X-PUBLISHED-TTL:PT1H BEGIN:VTIMEZONE TZID:America/New_York BEGIN:DAYLIGHT TZOFFSETFROM:-0500 TZOFFSETTO:-0400 TZNAME:EDT DTSTART:20240310T070000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0400 TZOFFSETTO:-0500 TZNAME:EST DTSTART:20241103T060000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:-0500 TZOFFSETTO:-0400 TZNAME:EDT DTSTART:20250309T070000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0400 TZOFFSETTO:-0500 TZNAME:EST DTSTART:20251102T060000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:-0500 TZOFFSETTO:-0400 TZNAME:EDT DTSTART:20260308T070000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0400 TZOFFSETTO:-0500 TZNAME:EST DTSTART:20261101T060000 END:STANDARD END:VTIMEZONE BEGIN:VEVENT DTSTART;TZID=America/New_York:20250811T190000 DTEND;TZID=America/New_York:20250811T200000 DTSTAMP:20260415T053028 CREATED:20250529T180349Z LAST-MODIFIED:20250909T190139Z UID:10002920-1754938800-1754942400@understandingmyositis.org SUMMARY:Young Adults with Myositis - MSU YA Collective Power Hour DESCRIPTION:[vc_row][vc_column]\n\n \n \n2nd Monday of Every Month \n7 PM ET / 6 PM CT / 5 PM MT / 4 PM PT \n [vc_column_text css=””] \nMSU Young Adult Collective Power Hour \nJoin fellow young adults living with Myositis for a private\, real-time group video support session. This is a safe\, supportive space to connect with others who understand what it’s like to navigate young adulthood with a chronic illness. Share your experiences\, challenges\, and thoughts—from managing symptoms and medical appointments to balancing work\, school\, and relationships—with a focus on connection and empowerment.  \nSupport sessions are never recorded. These are private\, real-time video support sessions with others like you.  \nThis session is open to all young adults (ages 18–40) living with any form of Myositis.  \nSessions are held on the 2nd Monday of Each Month\n1-Hour Session Only — designed to respect the busy lives of young adults who are working\, raising families\, studying\, or doing it all.  \nRegistration is required. After registering\, you’ll receive an email with the link and details to join. Please see the registration link below.  \nYou are not required to turn on your camera or speak—participate in the way that feels best to you. [/vc_column_text] To Register[/vc_column][/vc_row] URL:https://understandingmyositis.org/event/young-adults-with-myositis-msu-ya-collective-power-hour/2025-08-11/ LOCATION:MSU Zoom Video Session\, Video session using Zoom CATEGORIES:Video Support Sessions ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2025/05/MSU-YA-Adult-FB-1200-x-630-px.png ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20250813T190000 DTEND;TZID=America/New_York:20250813T200000 DTSTAMP:20260415T053028 CREATED:20250529T164840Z LAST-MODIFIED:20250909T190423Z UID:10002561-1755111600-1755115200@understandingmyositis.org SUMMARY:Couch Critics DESCRIPTION:[vc_row][vc_column]\n\n \n \n2nd & 4th Wednesday of Each Month- Starting June 11th \n7 PM ET / 6 PM CT / 5 PM MT / 4 PM PT \n [vc_column_text css=””] \n“Couch Critics” – A Movie Club for the Myositis Community! \nJoin us for a delightful escape into the world of film\, hosted by MSU Virtual Moderators William Robinson and Mary Oltmans. Whether you’re a patient or a care partner\, this movie club is for you!  \n“Couch Critics” is the perfect place to connect\, unwind\, and enjoy meaningful discussions with fellow movie enthusiasts. Don’t miss out on the fun – grab your popcorn and let’s experience the magic of movies together!  \n#CouchCritics #MovieClub #MyositisCommunity #FilmFun #MSU   \n[/vc_column_text] To Register[/vc_column][/vc_row] URL:https://understandingmyositis.org/event/couch-critics/2025-08-13/ LOCATION:MSU Zoom Video Session\, Video session using Zoom CATEGORIES:Video Support Sessions ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2025/05/MovieClub-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:20250826T150000 DTEND;TZID=America/New_York:20250826T160000 DTSTAMP:20260415T053028 CREATED:20250630T172608Z LAST-MODIFIED:20250909T190734Z UID:10010652-1756220400-1756224000@understandingmyositis.org SUMMARY:Finding Our Balance: Navigating Myositis & Dysautonomia DESCRIPTION:[vc_row][vc_column][vc_column_text css=””]Are you living with Myositis and also dealing with Dysautonomia or suspect you might be? You’re not alone! It’s common for autoimmune conditions like Myositis to co-occur with Dysautonomia. Join our support group\, offering a safe and nurturing space for individuals managing both conditions. This is an opportunity to share experiences\, find comfort in the community\, and exchange tips and resources for managing symptoms effectively.  \nWhat is Dysautonomia?\nDysautonomia refers to conditions affecting the autonomic nervous system\, which controls involuntary functions such as heart rate\, blood pressure\, and digestion. Some common subtypes include:   \n\nPostural Orthostatic Tachycardia Syndrome (POTS) \n\n\nInappropriate Sinus Tachycardia (IST) \n\n\nNeurocardiogenic Syncope (NCS) \n\n\nAutonomic Neuropathy \n\nFor more information\, Dysautonomia International is an excellent resource to explore: Dysautonomia International.  \nJoin us to connect\, learn\, and support one another in managing these challenging conditions. [/vc_column_text] To Register[/vc_column][/vc_row] URL:https://understandingmyositis.org/event/finding-our-balance-navigating-myositis-dysautonomia/2025-08-26/ LOCATION:MSU Zoom Video Session\, Video session using Zoom CATEGORIES:Video Support Sessions ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2025/06/Dysautonomia-Group-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:20250827T150000 DTEND;TZID=America/New_York:20250827T160000 DTSTAMP:20260415T053028 CREATED:20250529T171113Z LAST-MODIFIED:20250916T000435Z UID:10003789-1756306800-1756310400@understandingmyositis.org SUMMARY:Couch Critics DESCRIPTION:[vc_row][vc_column]\n\n \n \n4th Wednesday of Each Month \n3 PM ET / 2 PM CT / 1 PM MT / 12 PM PT \n [vc_column_text css=””] \n“Couch Critics” – A Movie Club for the Myositis Community! \nJoin us for a delightful escape into the world of film\, hosted by MSU Virtual Moderators William Robinson and Mary Oltmans. Whether you’re a patient or a care partner\, this movie club is for you!  \n“Couch Critics” is the perfect place to connect\, unwind\, and enjoy meaningful discussions with fellow movie enthusiasts. Don’t miss out on the fun – grab your popcorn and let’s experience the magic of movies together!  \n#CouchCritics #MovieClub #MyositisCommunity #FilmFun #MSU   \n[/vc_column_text] To Register[/vc_column][/vc_row] URL:https://understandingmyositis.org/event/couch-critics-2/2025-08-27/ LOCATION:MSU Zoom Video Session\, Video session using Zoom CATEGORIES:Video Support Sessions ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2025/05/MovieClub-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:20250830T110000 DTEND;TZID=America/New_York:20250830T181500 DTSTAMP:20260415T053028 CREATED:20250705T230227Z LAST-MODIFIED:20250705T230227Z UID:10003053-1756551600-1756577700@understandingmyositis.org SUMMARY:MYOCONNECT Summit - A Call to Action DESCRIPTION:[vc_row][vc_column]\n\n \n \n \n Summit Details \n \n \n \n Summit Agenda \n \n \n \n FAQ \n \n \n \n \n\n [vc_column_text css=””]We are excited to invite you to register now for the MYOCONNECT Virtual Summit\, hosted by Myositis Support and Understanding (MSU). This landmark event marks the launch of the MYOCONNECT Education and Empowerment Forum\, a new platform dedicated to putting patients’ voices first through trusted\, patient-focused education and powerful resources.  \nSummit Date: August 30th | 11 AM – 6 PM EST  \nThis year’s theme is “A Call to Action” — because after 10 years of supporting the Myositis community\, this community is DONE waiting. It is time to move beyond patience and start creating waves of change together. Whether you are a patient\, caregiver\, medical professional\, or advocate\, this summit will equip you with the knowledge\, tools\, and inspiration to make your voice heard and spark real progress.  \nJoin us for engaging sessions\, inspiring speakers\, and meaningful conversations that empower every member of the Myositis community  \nRegister today to secure your spot:  MYOCONNECT Summit   \nBe part of this historic moment — let us take action\, together! [/vc_column_text]\n\n\n [vc_column_text css=””] \nMYOCONNECT: Education & Empowerment Summit\nTheme: A Call to Action\nDate: Saturday\, August 30\, 2025\nLocation: Virtual via Zoom\nTime: 11:00 AM – 6:10 PM \n\nAgenda\nWelcome Remarks: Putting Patients First in Our DNA \n\nTime: 11:00 – 11:15 AM\nSpeakers: Elisa Glass\, Jerry Williams\nDescription: Kick off the day with a reminder that patients are at the heart of our mission. Commit to a “patient-first” ethos.\n\nThe Voice of the Patient- Research Driven by Patients \n\nTime: 11:20 AM – 12:20 PM\nSpeakers: Manuel Lubinus\, Shirley\, Rod\, Marlene Jansen\nDescription: Discover how patient experiences shape care. Key insights from the Pain and Burden of Care Papers.\n\nHow CAR T‑Cell Therapy is Changing Research and Clinical Trials \n\nTime: 12:25 – 1:25 PM\nSpeaker: Dr. Gandgia\nDescription: Explore how CAR T-cell therapy is revolutionizing rare disease treatment and clinical trials.\n\nMidday Refresh & Recharge \n\nTime: 1:25 – 2:25 PM\n\nIgniting the Fire – A New Age of Advocacy \n\nTime: 2:25 – 3:05 PM\nSpeakers: Kyanna Williams\, Corene Canaan\nDescription: Young adults demand visibility and action. Learn how they are transforming rare disease advocacy.\n\nKourage Health Movement Class \n\nTime: 3:10 – 3:40 PM\nInstructor: Cooper Lee\nDescription: Join us for a dynamic 30-minute exercise session led by Cooper Lee\, an exercise specialist from Kourage Health\, a non-profit organization dedicated to empowering individuals with serious health conditions.\n\nHealth Insurance 101: Denials\, Appeals\, and Self-Advocacy \n\nTime: 3:45 – 4:45 PM\nSpeaker: Michelle Vogel\nDescription: Navigate insurance challenges with expert tips on turning denials into approvals.\n\nLegislative Advocacy: Turning Stories into Policy \n\nTime: 4:50 – 5:20 PM\nSpeakers: Corene Canaan\, Kendall Rump\, Elisa Glass\nDescription: Transform personal stories into legislative change.\n\nFighting Medical Gaslighting: The Power of Being Heard \n\nTime: 5:25 – 6:05 PM\nSpeaker: Mackenzie Abraham\nDescription: Empower yourself to overcome medical dismissal and advocate confidently.\n\nClosing Reflections: We Are the Change \n\nTime: 6:05 – 6:10 PM\nSpeakers: Elisa Glass\, Jerry Williams\nDescription: Reflect on our progress and commit to continued change for the rare disease community.\n\n\nJoin us for a day of learning\, empowerment\, and advocacy![/vc_column_text]\n\n\n [vc_column_text css=””]Who is hosting this event? \nMYOCONNECT Summit is hosted by Myositis Support & Understanding (MSU)\, a patient-centered nonprofit dedicated to education\, support\, and advocacy for all forms of Myositis. \n Is the MYOCONNECT Summit free to attend? \nYes! This is a completely free event hosted by Myositis Support & Understanding (MSU). We believe access to education\, community\, and empowerment should never come with a financial barrier. \nDo I need to attend the entire day? \nNot at all! You’re welcome to join us for the full summit or drop in and out based on your schedule and energy. Each session is designed to stand alone\, so you can participate in the way that works best for you. \nWho should attend? \nThis summit is for anyone impacted by Myositis—patients\, care partners\, family members\, and supporters—as well as health professionals and advocates who want to learn more. \nWhat if I miss a session? \nRegistrants will receive access to the the recordings from the MYOCONNECT Summit after the event\, so you won’t miss out even if you can’t make it live. \n[/vc_column_text]\n\n \n\n To Register[/vc_column][/vc_row] URL:https://understandingmyositis.org/event/myoconnect-summit-a-call-to-action/ LOCATION:MSU Zoom Video Session\, Video session using Zoom CATEGORIES:Video Education Session ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2025/07/Summit-Webpage-2.png ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org END:VEVENT END:VCALENDAR