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DTSTART;TZID=America/New_York:20250830T110000
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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
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