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X-WR-CALDESC:Events for Myositis Support and Understanding
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DTSTART;TZID=America/Chicago:20250502T100000
DTEND;TZID=America/Chicago:20250502T160000
DTSTAMP:20260415T110756
CREATED:20250318T203953Z
LAST-MODIFIED:20250318T205940Z
UID:10002044-1746180000-1746201600@understandingmyositis.org
SUMMARY:The Patient Voice Workshop
DESCRIPTION:[vc_row][vc_column][vc_column_text css=””] \nJoin Us for The Patient Voice Workshop!\nWe invite you to The Patient Voice Workshop on Friday\, May 2\, 2025\, at the beautiful Huntsville Botanical Gardens in Huntsville\, Alabama from 10 AM to 4 PM. (This is an in person event) \nThis enriching event promises insightful sessions and meaningful connections. \nHighlights Include: \nPanel Discussion: Engage in powerful storytelling focused on quality of care in the myositis community. Hear personal narratives that unveil patient challenges and explore key initiatives like improving community response to those in crisis. Your voice matters—come ready to share and connect! \n#MyositisLife Session: Discover how MSU’s programs\, support groups\, and webinars empower patients and care partners. Learn about the resources tackling challenges like fatigue and dysphagia\, and join the conversation on transforming patient needs into impactful actions. \nCountdown to the Moon Walk: Prepare for an inspiring journey as we kick off the Countdown to the Myositis Moon Walk Lift Off tomorrow\, May 3rd\, starting at 10 AM at the U.S. Space and Rocket Center in Huntsville! Unite with the Myositis community to advocate for awareness and support. \nDon’t miss the chance to be part of something truly special. Let’s make a memorable impact together! \n#PatientVoiceWorkshop #MyositisCommunity #HopeAndProgress #JoinUs \n[/vc_column_text] Register to Attend[vc_single_image image=”42657″ img_size=”large” alignment=”center” css=””][/vc_column][/vc_row]
URL:https://understandingmyositis.org/event/the-patient-voice-workshop/
LOCATION:Other Platform
CATEGORIES:In Person
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2025/03/Blue-and-White-Modern-Business-Conference-Instagram-Post-1200-x-630-px-1.png
ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250503T100000
DTEND;TZID=America/Chicago:20250503T160000
DTSTAMP:20260415T110756
CREATED:20250318T205834Z
LAST-MODIFIED:20250430T154809Z
UID:10002045-1746266400-1746288000@understandingmyositis.org
SUMMARY:2nd Annual Myositis Moon Walk
DESCRIPTION:[vc_row][vc_column][vc_column_text css=””]Join Myositis Support & Understanding for the Myositis Moon Walk\, an extraordinary livestream event that invites participants to embark on a unique journey through the U.S. Space and Rocket Center! Experience the awe of walking alongside iconic rockets and historic space artifacts\, all while raising awareness and support for the Myositis community. \nThe route will provide an inspiring backdrop as we celebrate resilience and unity\, culminating in a memorable finish beneath the majestic Saturn V rocket. This powerful event not only highlights the remarkable innovations in space exploration but also amplifies our commitment to raising awareness for those affected by Myositis. \nDon’t miss this opportunity to be part of a meaningful experience surrounded by history and innovation. Together\, we can shine a light on the Myositis community and its journey. Join us for the Myositis Moon Walk and help make a difference!  \nEvent Highlights: \n\nWalk alongside iconic rockets and space artifacts\nExperience an inspiring backdrop culminating under the Saturn V rocket\nRaise awareness for the Myositis community\n\nTune in to our livestream and be part of this incredible journey! \n#MSUmoonwalk #MoonWalkEvent #MyositisAwareness #myositis #MyositisMoonWalk #MSU #MyositisCommunity #MyositisEvent #MSUfundraising #MyositisAwareness #MyositisSupport #MyositisPatients #MyositisCarePartners[/vc_column_text] Watch The Livestream![vc_single_image image=”42657″ img_size=”large” alignment=”center” css=””][/vc_column][/vc_row]
URL:https://understandingmyositis.org/event/2nd-annual-myositis-moon-walk/
LOCATION:MSU Live YouTube\, MSU YouTube Page
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2025/03/Simple-World-Space-Week-Flyer-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:20250505T190000
DTEND;TZID=America/New_York:20250505T210000
DTSTAMP:20260415T110756
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:20250510T140000
DTEND;TZID=America/New_York:20250510T153000
DTSTAMP:20260415T110756
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:20250513T190000
DTEND;TZID=America/New_York:20250513T210000
DTSTAMP:20260415T110756
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:20250519T130000
DTEND;TZID=America/New_York:20250519T143000
DTSTAMP:20260415T110756
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:20250520T160000
DTEND;TZID=America/New_York:20250520T173000
DTSTAMP:20260415T110756
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:20250529T190000
DTEND;TZID=America/New_York:20250529T200000
DTSTAMP:20260415T110756
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
END:VEVENT
END:VCALENDAR