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X-WR-CALDESC:Events for Myositis Support and Understanding
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DTSTART;TZID=America/New_York:20250510T140000
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DTSTAMP:20250409T175347Z
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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
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DTSTART;TZID=America/New_York:20250519T130000
DTEND;TZID=America/New_York:20250519T143000
DTSTAMP:20250410T222950Z
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
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DTSTART;TZID=America/New_York:20250520T160000
DTEND;TZID=America/New_York:20250520T173000
DTSTAMP:20250510T210050Z
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
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250529T190000
DTEND;TZID=America/New_York:20250529T200000
DTSTAMP:20250424T214356Z
CREATED:20250424T214356Z
LAST-MODIFIED:20250424T214356Z
UID:10002425-1748545200-1748548800@understandingmyositis.org
SUMMARY:Myo Night: Making the Best of My Own Night
DESCRIPTION:[vc_row][vc_column]\n\n	\n \nStarting at 7 PM Eastern time\n(6 PM CT\, 5 PM MT\, 4 PM PT) \nMyositis Patients & Care Partners\, click the button below to register to attend.   [vc_column_text css=””]Join us for Myo Night: Making the Best of My Own Night on May 29th at 7 PM ET\, a special Zoom event to celebrate Myositis Awareness Month and our theme\, “My Myo Story Matters: Be the Hero of Your Own Story.” \nWhat to Expect: \nThis vibrant event invites individuals with Myositis and their loved ones to showcase their passions and talents\, such as poetry\, music\, and arts\, from the comfort of home. \nWhy Participate in Myo Night? \nThis event is all about embracing your power and celebrating the hero within you. It encourages you to make the best of your night\, reinforcing the idea that despite challenges\, you can create meaningful moments. Whether you’re participating solo or inviting friends and family\, it’s an opportunity to share your unique story and celebrate your journey. \nJoin us for a vibrant evening of:\n– Creative showcases\n– Personal storytelling\n– Celebrating resilience and talent \nLet’s close out the month by highlighting the incredible ways you navigate life. Remember\, your story matters\, and we can’t wait to celebrate your journey. Be the hero of your own story and inspire others with your courage and creativity![/vc_column_text] To Register[/vc_column][/vc_row]
URL:https://understandingmyositis.org/event/myo-night-making-the-best-of-my-own-night/
LOCATION:MSU Zoom Video Session\, Video session using Zoom
CATEGORIES:Video Session
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2025/04/MYO-Night-1200-x-630-px.png
ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org
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