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:20220313T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20221106T060000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20230312T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20231105T060000
END:STANDARD
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
END:VTIMEZONE
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240924T180000
DTEND;TZID=America/New_York:20240924T190000
DTSTAMP:20260414T183528
CREATED:20240904T161008Z
LAST-MODIFIED:20241231T180233Z
UID:10001882-1727200800-1727204400@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/2024-09-24/
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:20240918T140000
DTEND;TZID=America/New_York:20240918T150000
DTSTAMP:20260414T183528
CREATED:20240904T192513Z
LAST-MODIFIED:20240905T153729Z
UID:10001868-1726668000-1726671600@understandingmyositis.org
SUMMARY:Innovative Approaches in Biopharmaceutical Research: Ensuring Patient-Centric Healthcare Solutions
DESCRIPTION:[vc_row][vc_column][vc_column_text css=””]In this webinar\, we’ll highlight the impactful collaboration between Galapagos and MSU\, focusing on our shared dedication to patient-centric healthcare. Our partnership has been vital in several initiatives\, including the collection of patient voices for our ongoing Phase 2 clinical trial. At Galapagos\, our research in inflammation and oncology is driven by a commitment to ensure that patient perspectives are central to our initiatives\, shaping solutions that truly meet patient needs and expectations. \nA significant aspect of our approach is the development of patient facing materials including informed consent documents. Zoltan Koleszar\, GLPG Patient Advocacy Leader\, will share his expertise on how patient recommendations are integrated into these critical documents. He will discuss how we ensure that the informed consent process is transparent\, comprehensible\, and respectful of patient needs\, and outline how these documents are approved for use in clinical trials. \nAdditionally\, we will feature a pre-recorded segment by Ann Fieuw\, GLPG Senior Medical Director. Ann will provide valuable insights into recent trends in dermatomyositis and information on our ongoing clinical trial. \nJoin us for this comprehensive session to understand how Galapagos is integrating patient feedback into every stage of research\, ensuring that our healthcare solutions are as effective and relevant as possible.[/vc_column_text][/vc_column][/vc_row][vc_row][vc_column][/vc_column][/vc_row][vc_row][vc_column] REGISTER[/vc_column][/vc_row]
URL:https://understandingmyositis.org/event/innovative-approaches-in-biopharmaceutical-research-ensuring-patient-centric-healthcare-solutions/
LOCATION:ZOOM Webinar\, 9125 N Old State Rd\, Lincoln\, DE\, 19960\, United States
CATEGORIES:Video Session
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2024/09/Galapagos-Webinar-Graphic.png
ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240819T140000
DTEND;TZID=America/New_York:20240819T150000
DTSTAMP:20260414T183528
CREATED:20240808T032033Z
LAST-MODIFIED:20240808T221527Z
UID:10001867-1724076000-1724079600@understandingmyositis.org
SUMMARY:Battling Brain Fog
DESCRIPTION:[vc_row][vc_column][vc_column_text css=””] Living Fully with Myositis: MSU’s #MyositisLife Initiative Series Presents… \nBattling Brain Fog\nThis informative session will focus on effective ways to manage cognitive fatigue and provide you with essential strategies and tools to regain control over daily responsibilities. \nDiscover functional supports that can help enhance your overall quality of life and empower you to navigate challenges with confidence! \nDon’t miss this opportunity to learn and connect with others facing similar struggles. Your journey to clarity and productivity starts here! [/vc_column_text][/vc_column][/vc_row][vc_row][vc_column] To register visit[vc_custom_heading text=”Meaghan Arnold” font_container=”tag:h5|text_align:left” css=””][/vc_column][/vc_row][vc_row][vc_column width=”1/2″][vc_single_image image=”41919″ img_size=”medium” css=””][/vc_column][vc_column width=”1/2″][vc_column_text css=””]-️ Hosted by Speech Swallowing and Neurological Rehabilitation (SSNR)\, a private practice in Tyler\, Texas\, this webinar will be led by Meaghan Arnold\, a dedicated medical speech-language pathologist and owner of SSNR. With a Bachelor of Science degree from The University of Arizona and a Master of Arts degree from The University of Texas at Austin\, Meaghan brings over eight years of experience in skilled nursing facilities\, home health\, and outpatient settings. \n-‍⚕️ Meaghan specializes in treating voice\, swallowing\, speech\, language\, cognition\, and memory deficits. She’s passionate about person-centered care and community education\, hosting two support groups and speaking at local events to advocate for her patients. Visit SSNR website at https://ssnrtx.com/[/vc_column_text][/vc_column][/vc_row]
URL:https://understandingmyositis.org/event/battling-brain-fog/
LOCATION:MSU Zoom Video Session\, Video session using Zoom
CATEGORIES:Video Session
ATTACH;FMTTYPE=image/jpeg:https://understandingmyositis.org/wp-content/uploads/2024/08/Battling-Brain-Fog-1-1.jpg
ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240805T140000
DTEND;TZID=America/New_York:20240805T153000
DTSTAMP:20260414T183528
CREATED:20240722T122028Z
LAST-MODIFIED:20240723T215604Z
UID:10001343-1722866400-1722871800@understandingmyositis.org
SUMMARY:Fatigue Management Part 2-Practical Ways To Remove Challenges When Managing Fatigue
DESCRIPTION:[vc_row padding_top=”20″ padding_bottom=”30″][vc_column][vc_column_text css=””] \nWebinar: Fatigue Management Part 2-Practical Ways To Remove Challenges When Managing Fatigue\nMonday\, August 5th\, on Zoom at 11 AM PT / 12 PM MT / 1 PM CT / 2 PM ET / 7 PM BST / 8 PM CEST  \nA Living Fully with Myositis: MSU’s #MyositisLife Initiative Series \nJoin us for Part 2 of our Fatigue Management Series! \nDive into practical solutions to tackle fatigue challenges with our expert speaker\, Pamela Rose. Learn effective energy management techniques and discover actionable strategies to conquer fatigue. \nIn this engaging session\, Pamela will cover: \n✨ Navigating tricky conversations \n✨ Responding thoughtfully rather than reacting \n✨ Maintaining a vibrant social life \n✨ Mindset adjustments that help you be resourceful every day \nDon’t miss this chance to master the skills needed to face daily challenges and live a more energized lifestyle. Your journey to optimized energy and balance starts here![/vc_column_text] Click to Register on Zoom[/vc_column][/vc_row][vc_row][vc_column][vc_column_text css=””] \nAbout Pamela Rose\n \n“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.” \nPamela Rose Contact information info@pamelarose.co.uk or visit her website at https://www.pamelarose.co.uk/[/vc_column_text][/vc_column][/vc_row]
URL:https://understandingmyositis.org/event/practical-ways-to-remove-challenges-when-managing-fatigue/
LOCATION:MSU Zoom Video Session\, Video session using Zoom
CATEGORIES:Video Session
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2024/07/Fatigue-Management-Graphic-4.png
ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240722T140000
DTEND;TZID=America/New_York:20240722T150000
DTSTAMP:20260414T183528
CREATED:20240520T171902Z
LAST-MODIFIED:20240716T231358Z
UID:10001721-1721656800-1721660400@understandingmyositis.org
SUMMARY:Fatigue Management - Mastering Fatigue Pacing for a Balanced Life
DESCRIPTION:[vc_row padding_top=”20″ padding_bottom=”20″][vc_column] [vc_column_text css=””] \nLiving Fully with Myositis: MSU’s #MyositisLife Initiative Series Presents – Fatigue Management – Mastering Fatigue Pacing for a Balanced Life\nSee the details below and register to join us on Zoom \n[/vc_column_text][vc_column_text css=””] \nMonday\, July 22nd\n2 PM ET / 1 PM CT / 12 PM MT / 11 AM PT \n7:00 PM BST /8:00 PM CEST \n[/vc_column_text][vc_row_inner][vc_column_inner] Register to attend[vc_empty_space height=”12px”][/vc_column_inner][/vc_row_inner][/vc_column][/vc_row][vc_row equal_height=”yes” el_id=”details”][vc_column][vc_column_text css=””] \n\n\nJoin us for an exclusive session tailored for myositis patients! \nDive into the crucial topic of fatigue management with our expert speaker\, Pamela Rose. Discover the keys to effective energy management and conquer fatigue with practical strategies. \nLearn the art of pacing for a balanced and fulfilling life\, gaining invaluable insights to boost your well-being. Don’t miss this opportunity to master the skills needed to navigate daily challenges and embrace an energized lifestyle. Your journey to optimized energy and balance starts here! \n“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 behaviours 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.” \n\n[/vc_column_text][vc_column_text] \nAbout joining this webinar\nREGISTRATION IS REQUIRED. Click the Register button above to get started. After registration\, you will receive an email containing all information needed to join the webinar at the scheduled time and date. \nBe sure to check your spam and junk folders if you do not see the email.[/vc_column_text][/vc_column][/vc_row][vc_row padding_bottom=”10″][vc_column][vc_custom_heading text=”Event starts in . . .” font_container=”tag:h3|text_align:center” use_theme_fonts=”yes”]2024/05/21 19:00:00[/vc_column][/vc_row][vc_row padding_top=”30″ padding_bottom=”0″][vc_column]\n\n	\nGet Zoom We use Zoom for all webinars and our video support sessions. \nZoom is available for free and you can download and install the software on your computer or laptop\, or use the free app for your smartphone and tablet. \nTo download the app for your smartphone or tablet\, open your app store\, search for Zoom\, and install.   \n\n	\nMSU on YouTube Follow us on YouTube for Live Streaming Events and over 100 videos of past webinars\, and to meet our volunteers.   \n\n	\nMSU Facebook page Be sure to visit and “Like” our public Facebook page for special events\, articles\, videos\, and patient and caregiver opportunities.   [/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/myositis-and-fatigue-management/
LOCATION:ZOOM Webinar\, 9125 N Old State Rd\, Lincoln\, DE\, 19960\, United States
CATEGORIES:Video Session
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2024/05/Fatigue-Management-Graphic-2.png
ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240612T130000
DTEND;TZID=America/New_York:20240612T140000
DTSTAMP:20260414T183528
CREATED:20240311T161008Z
LAST-MODIFIED:20240703T231750Z
UID:10001384-1718197200-1718200800@understandingmyositis.org
SUMMARY:Mindfulness Discussions with MSU
DESCRIPTION:[vc_row][vc_column] [vc_column_text] \n2nd Wednesday of the month\n1 PM ET / 12 PM CT / 11 AM MT / 10 AM PT\n[/vc_column_text][vc_empty_space][vc_column_text] \nJoin us for Mindfulness Discussions with MSU! Now on Zoom!\nAs we all know here at MSU\, living with myositis isn’t easy. We understand\, empathize\, and relate to our journeys together and support each other the best we can. \nAs a part of this supportive community\, we want to introduce the practice of mindfulness. Mindfulness can truly help you find balance and peace\, and strengthen your connection to the self. \nAngelic Ingram\, Holistic Health Practioner and founder of a Mindful Journey to Freedom (expat coach) will lead discussions about mindfulness and related topics and work with the group on activities like meditation\, breathwork\, and others. \nThis session is for myositis patients and care partners. You can join to listen or to share.  \nThis is not a support group. We keep the focus of this room on the topic of mindfulness. \nJoin and learn what mindfulness is and how it might help you through your journey! \nWorking with mindfulness is often a positive experience\, however\, some practices may bring up difficult emotions. As always\, we encourage you to consider working together with a counselor/therapist\, which has many scientifically-backed benefits. [/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/mindfulness-discussions-2/2024-06-12/
LOCATION:MSU Zoom Video Session\, Video session using Zoom
CATEGORIES:Video Session
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2023/05/Mindfulness-Website-Graphic-1200-x-630.png
ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240509T190000
DTEND;TZID=America/New_York:20240509T200000
DTSTAMP:20260414T183528
CREATED:20240507T193836Z
LAST-MODIFIED:20240507T193836Z
UID:10001720-1715281200-1715284800@understandingmyositis.org
SUMMARY:Meet Myositis Authors
DESCRIPTION:[vc_row padding_top=”20″ padding_bottom=”20″][vc_column] [vc_column_text css=””] \nMeet Myositis Authors\nSee the details below and register to join us on Zoom \n[/vc_column_text][vc_column_text css=””] \nThursday\, May 9th\n7 PM ET / 6 CT / 5 MT / 4 PT \n[/vc_column_text][vc_row_inner][vc_column_inner] Register to attend[vc_empty_space height=”12px”][/vc_column_inner][/vc_row_inner][/vc_column][/vc_row][vc_row equal_height=”yes” el_id=”details”][vc_column][vc_column_text css=””] \n\nMSU is proud to present Myositis Author’s Night. This is a series of webinars where MSU will highlight different myositis authors who are writing about their myositis journey. \nPlease join us on May 9th for our first session featuring the following authors. \nEmily Filmore Being Sick Sucks: The Autoimmune Abyss (2023) and The Marvelous Transformation: Living Well with Autoimmune Disease (Central Recovery Press\, 2015) as well as four parenting-related books. \nHolly Jones co-author of ‘Awaken Your Inner Warrior” Holly also serves on the Board of Directors for The Myositis Association and is the leader of the Myositis Women of Color Affinity Group (TMA) as well as founding and running the non-profit organization HERstory In Color. \nWilliam Tillier author of “Inclusion Body Myositis; A Guide for Patients” In his book Bill combines the medical and practical aspects of living with IBM in an accessible way. It is a helpful guide for patients\, their families\, doctors\, and caregivers. \n\n\nThere will be a Q&A at the end of the author’s presentation. You may submit questions upon registration or during the webinar. We look forward to seeing you there! \n\n[/vc_column_text][vc_column_text] \nAbout joining this webinar\nREGISTRATION IS REQUIRED. Click the Register button above to get started. After registration\, you will receive an email containing all information needed to join the webinar at the scheduled time and date. \nBe sure to check your spam and junk folders if you do not see the email.[/vc_column_text][/vc_column][/vc_row][vc_row padding_bottom=”10″][vc_column][vc_custom_heading text=”Event starts in . . .” font_container=”tag:h3|text_align:center” use_theme_fonts=”yes”]2024/05/09 19:00:00[/vc_column][/vc_row][vc_row padding_top=”30″ padding_bottom=”0″][vc_column]\n\n	\nGet Zoom We use Zoom for all webinars and our video support sessions. \nZoom is available for free and you can download and install the software on your computer or laptop\, or use the free app for your smartphone and tablet. \nTo download the app for your smartphone or tablet\, open your app store\, search for Zoom\, and install.   \n\n	\nMSU on YouTube Follow us on YouTube for Live Streaming Events and over 100 videos of past webinars\, and to meet our volunteers.   \n\n	\nMSU Facebook page Be sure to visit and “Like” our public Facebook page for special events\, articles\, videos\, and patient and caregiver opportunities.   [/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/meet-myositis-authors/
LOCATION:MSU Zoom Video Session\, Video session using Zoom
CATEGORIES:Video Session
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2024/05/authors-night.png
ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240508T130000
DTEND;TZID=America/New_York:20240508T140000
DTSTAMP:20260414T183528
CREATED:20240311T161008Z
LAST-MODIFIED:20240703T231750Z
UID:10001383-1715173200-1715176800@understandingmyositis.org
SUMMARY:Mindfulness Discussions with MSU
DESCRIPTION:[vc_row][vc_column] [vc_column_text] \n2nd Wednesday of the month\n1 PM ET / 12 PM CT / 11 AM MT / 10 AM PT\n[/vc_column_text][vc_empty_space][vc_column_text] \nJoin us for Mindfulness Discussions with MSU! Now on Zoom!\nAs we all know here at MSU\, living with myositis isn’t easy. We understand\, empathize\, and relate to our journeys together and support each other the best we can. \nAs a part of this supportive community\, we want to introduce the practice of mindfulness. Mindfulness can truly help you find balance and peace\, and strengthen your connection to the self. \nAngelic Ingram\, Holistic Health Practioner and founder of a Mindful Journey to Freedom (expat coach) will lead discussions about mindfulness and related topics and work with the group on activities like meditation\, breathwork\, and others. \nThis session is for myositis patients and care partners. You can join to listen or to share.  \nThis is not a support group. We keep the focus of this room on the topic of mindfulness. \nJoin and learn what mindfulness is and how it might help you through your journey! \nWorking with mindfulness is often a positive experience\, however\, some practices may bring up difficult emotions. As always\, we encourage you to consider working together with a counselor/therapist\, which has many scientifically-backed benefits. [/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/mindfulness-discussions-2/2024-05-08/
LOCATION:MSU Zoom Video Session\, Video session using Zoom
CATEGORIES:Video Session
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2023/05/Mindfulness-Website-Graphic-1200-x-630.png
ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240417T160000
DTEND;TZID=America/New_York:20240417T170000
DTSTAMP:20260414T183528
CREATED:20240412T164245Z
LAST-MODIFIED:20240412T170117Z
UID:10001719-1713369600-1713373200@understandingmyositis.org
SUMMARY:Community Orientation Webinar
DESCRIPTION:[vc_row padding_top=”20″ padding_bottom=”20″][vc_column] [vc_column_text] \nMyositis Community Orientation Webinar\nJoin us for a Community Orientation Webinar to learn how you can participate virtually in the first-ever Adult Dermatomyositis Patient-Focused Drug Development (EL-PFDD) meeting with the FDA. \nSee the full agenda below\, including how you can get involved in this important endeavor. \n[/vc_column_text][vc_column_text] \nWednesday\, April 17\, 2024\n4 PM ET / 3 CT / 2 MT / 1 PT \n[/vc_column_text][vc_row_inner][vc_column_inner] Register to attend[vc_empty_space height=”12px”][/vc_column_inner][/vc_row_inner][/vc_column][/vc_row][vc_row equal_height=”yes” el_id=”details”][vc_column width=”1/2″][vc_column_text] \nThe agenda for this webinar:\n\nWhat is patient-focused drug development?\nWhat is the purpose of the Adult DM EL-PFDD?\nWhat does it mean to the community?\nHow can you get involved?\n\nSurvey\nWritten testimonials\nVideo testimonials\n\n\n\n[/vc_column_text][vc_empty_space height=”12px”][/vc_column][vc_column width=”1/2″][vc_column_text] \nAbout joining this webinar\nREGISTRATION IS REQUIRED. Click the Register button above to get started. After registration\, you will receive an email containing all information needed to join the webinar at the scheduled time and date. \nBe sure to check your spam and junk folders if you do not see the email.[/vc_column_text][/vc_column][/vc_row][vc_row padding_bottom=”10″][vc_column][vc_custom_heading text=”Event starts in . . .” font_container=”tag:h3|text_align:center” use_theme_fonts=”yes”]2024/04/17 16:00:00[/vc_column][/vc_row][vc_row padding_top=”30″ padding_bottom=”0″][vc_column]\n\n	\nGet Zoom We use Zoom for all webinars and our video support sessions. \nZoom is available for free and you can download and install the software on your computer or laptop\, or use the free app for your smartphone and tablet. \nTo download the app for your smartphone or tablet\, open your app store\, search for Zoom\, and install.   \n\n	\nMSU on YouTube Follow us on YouTube for Live Streaming Events and over 100 videos of past webinars\, and to meet our volunteers.   \n\n	\nMSU Facebook page Be sure to visit and “Like” our public Facebook page for special events\, articles\, videos\, and patient and caregiver opportunities.   [/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/community-orientation-webinar/
LOCATION:MSU Zoom Video Session\, Video session using Zoom
CATEGORIES:Video Session
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2024/04/Adult-Dermatomyositis-Externally-Led-Patient-Focused-Drug-Development-Meeting-EL-PFDD-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:20240410T130000
DTEND;TZID=America/New_York:20240410T140000
DTSTAMP:20260414T183529
CREATED:20240311T161008Z
LAST-MODIFIED:20240703T231750Z
UID:10001382-1712754000-1712757600@understandingmyositis.org
SUMMARY:Mindfulness Discussions with MSU
DESCRIPTION:[vc_row][vc_column] [vc_column_text] \n2nd Wednesday of the month\n1 PM ET / 12 PM CT / 11 AM MT / 10 AM PT\n[/vc_column_text][vc_empty_space][vc_column_text] \nJoin us for Mindfulness Discussions with MSU! Now on Zoom!\nAs we all know here at MSU\, living with myositis isn’t easy. We understand\, empathize\, and relate to our journeys together and support each other the best we can. \nAs a part of this supportive community\, we want to introduce the practice of mindfulness. Mindfulness can truly help you find balance and peace\, and strengthen your connection to the self. \nAngelic Ingram\, Holistic Health Practioner and founder of a Mindful Journey to Freedom (expat coach) will lead discussions about mindfulness and related topics and work with the group on activities like meditation\, breathwork\, and others. \nThis session is for myositis patients and care partners. You can join to listen or to share.  \nThis is not a support group. We keep the focus of this room on the topic of mindfulness. \nJoin and learn what mindfulness is and how it might help you through your journey! \nWorking with mindfulness is often a positive experience\, however\, some practices may bring up difficult emotions. As always\, we encourage you to consider working together with a counselor/therapist\, which has many scientifically-backed benefits. [/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/mindfulness-discussions-2/2024-04-10/
LOCATION:MSU Zoom Video Session\, Video session using Zoom
CATEGORIES:Video Session
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2023/05/Mindfulness-Website-Graphic-1200-x-630.png
ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240313T130000
DTEND;TZID=America/New_York:20240313T140000
DTSTAMP:20260414T183529
CREATED:20240311T161008Z
LAST-MODIFIED:20240703T231750Z
UID:10001381-1710334800-1710338400@understandingmyositis.org
SUMMARY:Mindfulness Discussions with MSU
DESCRIPTION:[vc_row][vc_column] [vc_column_text] \n2nd Wednesday of the month\n1 PM ET / 12 PM CT / 11 AM MT / 10 AM PT\n[/vc_column_text][vc_empty_space][vc_column_text] \nJoin us for Mindfulness Discussions with MSU! Now on Zoom!\nAs we all know here at MSU\, living with myositis isn’t easy. We understand\, empathize\, and relate to our journeys together and support each other the best we can. \nAs a part of this supportive community\, we want to introduce the practice of mindfulness. Mindfulness can truly help you find balance and peace\, and strengthen your connection to the self. \nAngelic Ingram\, Holistic Health Practioner and founder of a Mindful Journey to Freedom (expat coach) will lead discussions about mindfulness and related topics and work with the group on activities like meditation\, breathwork\, and others. \nThis session is for myositis patients and care partners. You can join to listen or to share.  \nThis is not a support group. We keep the focus of this room on the topic of mindfulness. \nJoin and learn what mindfulness is and how it might help you through your journey! \nWorking with mindfulness is often a positive experience\, however\, some practices may bring up difficult emotions. As always\, we encourage you to consider working together with a counselor/therapist\, which has many scientifically-backed benefits. [/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/mindfulness-discussions-2/2024-03-13/
LOCATION:MSU Zoom Video Session\, Video session using Zoom
CATEGORIES:Video Session
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2023/05/Mindfulness-Website-Graphic-1200-x-630.png
ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20231018T190000
DTEND;TZID=America/New_York:20231018T200000
DTSTAMP:20260414T183529
CREATED:20231010T171113Z
LAST-MODIFIED:20231010T171113Z
UID:10001564-1697655600-1697659200@understandingmyositis.org
SUMMARY:5 Top Tips for Open Enrollment
DESCRIPTION:[vc_row padding_top=”25″ padding_bottom=”20″][vc_column] [vc_column_text] \nRegister to join MSU with Michelle Vogel on Zoom\n5 Top Tips for Open Enrollment\n[/vc_column_text][vc_column_text] \nWednesday\, October 18\, 2023\, at 7 PM Eastern Time\n(7 PM ET / 6 CT / 5 MT / 4 PT) \n[/vc_column_text][vc_row_inner][vc_column_inner] Register for free[vc_empty_space height=”12px”][/vc_column_inner][/vc_row_inner][/vc_column][/vc_row][vc_row el_id=”details” padding_bottom=”20″][vc_column]Webinar Details[vc_column_text] \nAre you ready for the upcoming health insurance open enrollment season?\nMSU is excited to announce our upcoming webinar that aims to demystify the world of health insurance and help you make informed decisions about your coverage. With open enrollment just around the corner\, it’s the perfect time to get all your questions answered and ensure you can choose the right plan for your needs. \nIn this informative webinar\, Michelle Vogel of IV Solutions will guide you through the ins and outs of health insurance open enrollment. We’ll discuss key topics such as plan options\, coverage changes\, and important deadlines. Whether you’re new to the world of health insurance or a seasoned pro\, this webinar will provide valuable insights to help you navigate the process with confidence. \nDon’t miss out on this opportunity to gain clarity on your health insurance options and secure the coverage that suits you best. Join us on October 18th for a webinar that can significantly impact your healthcare decisions. \n[/vc_column_text][vc_column_text] \nAbout joining this webinar\nREGISTRATION IS REQUIRED for this free webinar. Click the Register button above to get started. After registration\, you will receive an email containing all of the information you need to join the webinar on the scheduled time and date. Be sure to check your spam and junk folders if you do not see the email.[/vc_column_text][/vc_column][/vc_row][vc_row padding_top=”30″ padding_bottom=”0″][vc_column]\n\n	\nGet help using Zoom We use Zoom for all webinars and video support\, activity\, and education sessions. \nZoom is available for free and you can download and install the software on your computer or laptop\, or visit your app store to get the app for your smartphone and tablet.See Zoom Help »   [/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=”Check out other 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][vc_row padding_bottom=”10″][vc_column][vc_custom_heading text=”Event starts in . . .” font_container=”tag:h3|text_align:center” use_theme_fonts=”yes”]2023/10/18 19:00:00[/vc_column][/vc_row]
URL:https://understandingmyositis.org/event/5-top-tips-for-open-enrollment/
LOCATION:ZOOM Webinar\, 9125 N Old State Rd\, Lincoln\, DE\, 19960\, United States
CATEGORIES:Video Session
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2023/09/Open-Enrollment-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:20230718T190000
DTEND;TZID=America/New_York:20230718T200000
DTSTAMP:20260414T183529
CREATED:20230710T143934Z
LAST-MODIFIED:20230710T143934Z
UID:10001398-1689706800-1689710400@understandingmyositis.org
SUMMARY:The MINT Clinical Trial for Myositis Patients with Interstitial Lung Disease
DESCRIPTION:[vc_row padding_top=”20″ padding_bottom=”30″][vc_column][vc_column_text] \nJoin Dr. Rohit Aggarwal and MSU for a webinar about The MINT Clinical Trial for Myositis Patients with Interstitial Lung Disease!\nTuesday\, July 18th at 7 PM ET / 6 PM CT / 5 PM MT / 4 PM PT \nIf you have been diagnosed with pulmonary fibrosis\, also known as Interstitial Lung Disease (ILD)\, and you also have myositis (such as polymyositis\, dermatomyositis\, or anti-synthetase syndrome) or positive myositis autoantibodies\, you may be eligible to take part in a research study called MINT. \nThe goal of this study is to gain a better understanding of how anti-fibrotic drugs can help treat myositis associated with ILD. The study will focus on the drug Nintedanib (brand name Ofev®)\, an oral anti-fibrotic medication approved by the Food and Drug Administration (FDA) for the treatment of various types of ILD. \nThe exciting part is that this clinical trial is unique because you won’t need to visit a study center. You can participate in the study from the comfort of your own home. No need to worry about traveling long distances or spending time away from your surroundings. \nIs this study right for you? Join the webinar to find out and have all of your questions answered.[/vc_column_text] Click to Register on Zoom[/vc_column][/vc_row]
URL:https://understandingmyositis.org/event/mint-clinical-trial-myositis-interstitial-lung-disease/
LOCATION:MSU Zoom Video Session\, Video session using Zoom
CATEGORIES:Video Session
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2023/07/MINT-Webinar-5.png
ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230531T130000
DTEND;TZID=America/New_York:20230531T140000
DTSTAMP:20260414T183529
CREATED:20230517T121103Z
LAST-MODIFIED:20230517T121853Z
UID:10001344-1685538000-1685541600@understandingmyositis.org
SUMMARY:Mindfulness Discussions with MSU
DESCRIPTION:[vc_row][vc_column] [vc_column_text] \nMay 31st on Zoom\n1 PM ET / 12 PM CT / 11 AM MT / 10 AM PT\nCreate Vision Boards\n[/vc_column_text][vc_empty_space][vc_column_text] \nJoin us for Mindfulness Discussions with MSU this time on Zoom!\nAs we all know here at MSU\, living with myositis isn’t easy. We understand\, empathize\, and relate to our journeys together and support each other the best we can. In this special session\, we will talk about and create vision boards. \nAngelic Ingram\, Holistic Health Practioner and founder of a Mindful Journey to Freedom (expat coach) will lead discussions about mindfulness and related topics and work with the group on activities like meditation\, breathwork\, and others. \nThis session is for myositis patients and care partners. You can join to listen or to share.  \nThis is not a support group. We keep the focus of this room on the topic of mindfulness. \nJoin and learn what mindfulness is and how it might help you through your journey! \nWorking with mindfulness is often a positive experience\, however\, some practices may bring up difficult emotions. As always\, we encourage you to consider working together with a counselor/therapist\, which has many scientifically-backed benefits. [/vc_column_text][vc_empty_space] Register on Zoom[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/mindfulness-tuesdays-vision-board/
LOCATION:MSU Zoom Video Session\, Video session using Zoom
CATEGORIES:Video Session
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2023/02/mindfulness.png
ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230523T190000
DTEND;TZID=America/New_York:20230523T203000
DTSTAMP:20260414T183529
CREATED:20230430T164727Z
LAST-MODIFIED:20230517T114028Z
UID:10001346-1684868400-1684873800@understandingmyositis.org
SUMMARY:The Disability Room
DESCRIPTION:[vc_row][vc_column] [vc_column_text] \nThe Disability Room\n[/vc_column_text][vc_empty_space][vc_column_text] \nJoin us on Zoom!\n\nJoin us at Myositis Support and Understanding (MSU) as we explore the life-changing question\, “Am I disabled?” \nThere can be many mixed emotions and thoughts around our disability status. Let’s take a moment to have a conversation as we share and learn together. \nWe will also discuss the history of the ADA (American Disability Act) in the U.S. and share our thoughts and ideas of what this means to our personal myositis journey. \n\n[/vc_column_text][vc_empty_space][vc_column_text] \nHow to join\nUse the button below to register to join this session.\n[/vc_column_text][vc_empty_space height=”15px”] Click to Register on Zoom[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/the-disability-room/
LOCATION:MSU Zoom Video Session\, Video session using Zoom
CATEGORIES:Video Session
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2023/04/disability-2.png
ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230509T190000
DTEND;TZID=America/New_York:20230509T203000
DTSTAMP:20260414T183529
CREATED:20230430T163824Z
LAST-MODIFIED:20230503T121810Z
UID:10001345-1683658800-1683664200@understandingmyositis.org
SUMMARY:What Brings You Joy?
DESCRIPTION:[vc_row][vc_column] [vc_column_text] \nWhat Brings You Joy?\nwith Lisa Sniderman the author of “The Grieving Project” and Jessica Taylor\, Director of Operations for MSU \n[/vc_column_text][vc_empty_space][vc_column_text] \nJoin us on Zoom!\nJoin us as we embark on an exploration of what joy means to you. As we navigate through our myositis journeys\, it can be easy to get stuck in a mindset that can hold us back from experiencing joy in our lives. We want to open a safe space to encourage a discussion of what lights YOU up! It’s time to connect\, or re-connect\, with what brings you joy.\n \nNurturing our mental wellness is crucial to our healing process and we hope that you join us to share\, learn and laugh together as we build heartfelt connections and open our hearts to more joy. \n \nWe look forward to seeing you there!\n[/vc_column_text][vc_empty_space][vc_column_text] \nHow to join\nUse the button below to attend. Registration is not required; simply click the button below to join\, or add this link to your calendar to join: https://us02web.zoom.us/j/87256075938\n[/vc_column_text][vc_empty_space height=”15px”] Click to join us on Zoom[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/what-brings-joy/
LOCATION:ZOOM Webinar\, 9125 N Old State Rd\, Lincoln\, DE\, 19960\, United States
CATEGORIES:Video Session
ATTACH;FMTTYPE=image/jpeg:https://understandingmyositis.org/wp-content/uploads/2023/04/joy-2.jpg
ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org
END:VEVENT
END:VCALENDAR