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X-WR-CALDESC:Events for Myositis Support and Understanding
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DTSTART;TZID=America/New_York:20260118T190000
DTEND;TZID=America/New_York:20260118T210000
DTSTAMP:20250909T193117Z
CREATED:20240103T201449Z
LAST-MODIFIED:20250909T193117Z
UID:10003174-1768762800-1768770000@understandingmyositis.org
SUMMARY:Weekly Sunday Clubhouse Support
DESCRIPTION:[vc_row][vc_column] [vc_column_text] \n#MyositisLIFE: Myositis Community Support\nOn Clubhouse\n[/vc_column_text][vc_column_text] \nEvery Sunday\n7 PM ET / 6 PM CT / 5 PM MT / 4 PM PT\n[/vc_column_text][vc_empty_space][vc_column_text css=””] \nJoin Myositis Support on Clubhouse\nJoin us every Sunday on Clubhouse. All Myositis patients and care partners are welcome. This is a members-only room to provide the safest space possible to share. Join us for support\, love\, and understanding. You can join to listen or to share. \nClubhouse is a free audio-only app. Being audio-only\, it’s a little different\, but we have many members who have joined and love it! We hope you will give it a try. Some describe it as sitting in a living room chatting with family.[/vc_column_text][vc_column_text] \nNew to Clubhouse? \nHere are some quick steps on how to join Clubhouse\, a free\, audio-only app. \nThere are several ways you can get on Clubhouse. Below is just one.  \n\nClick here to join the Myositis Support club. This will open a window where you can click to get the app.\nOr\, visit the app store for your device and search for and install “Clubhouse.”\nOpen the app and create your profile. Photos are encouraged\, and having something in your bio is helpful.\nOnce you join the Myositis Support club\, you will receive notifications in the app when our rooms open. And\, you can also see our schedule of rooms\, be notified of pop-up rooms\, and more.\nWhen you join us in a Clubhouse session\, you can listen or share. We welcome the entire Myositis Community!\n\nClick to visit the Clubhouse New User Guide[/vc_column_text][vc_column_text] \nUsing Clubhouse on your computer/laptop\nThere is third-party software\, Clubdeck\, that you can download and install on your computer to use Clubhouse. Clubdeck is available for Windows and Mac OS. You can only be logged in on one device\, however. So if you use Clubdeck\, you won’t be able to have Clubhouse on your device running at the same time.  Check out Clubdeck here.[/vc_column_text][vc_empty_space] Join Myositis Support on Clubhouse See All 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/myositislife-clubhouse-support-room-2/2026-01-18/
LOCATION:Clubhouse
CATEGORIES:Clubhouse
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2024/01/Instagram-Post-Sunday-Myositis-Community-Support-Group-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:20260119T150000
DTEND;TZID=America/New_York:20260119T163000
DTSTAMP:20250909T193352Z
CREATED:20240117T151829Z
LAST-MODIFIED:20250909T193352Z
UID:10003277-1768834800-1768840200@understandingmyositis.org
SUMMARY:Myositis Reads - A Book Club for Those with Myositis
DESCRIPTION:[vc_row][vc_column] [vc_column_text] \nMyositis Reads with MSU\nA bookclub for those living with Myositis on Clubhouse\nCare Partners are also welcome.\n[/vc_column_text][vc_column_text] \nEvery 3rd Monday\n3 PM ET / 2 PM CT / 1 PM MT / 12 PM PT\n[/vc_column_text][vc_empty_space][vc_column_text] \nJoin us for Myositis Reads!\nJoin us on Clubhouse for Myositis Reads\, a book club for those living with myositis\, and care partners\, hosted by Mary Oltmans and Kambiz (Kam) Roghanchi. Each month we will read a different book. We will ask for ideas for future reads and have a group vote with those who participate. This is an opportunity to get together with others impacted by myositis to have a little fun and great discussions not centered on our disease. \nTIPS to find the book: Call your local library to see if they have the book\, used book websites have great prices\, and we will talk about reading buddies if that’s something needed![/vc_column_text][vc_column_text] \nHow do I join?\nTo join this and all of our members-only Clubhouse rooms\, you must first create your free Clubhouse profile using your mobile/tablet device. See the steps below to download the Clubhouse app and join our Club\, Myositis Support. \nOnce you are a member of our Clubhouse Club you will receive popup notifications from Clubhouse when rooms start\, and you can view and join all sessions we have scheduled.[/vc_column_text][vc_column_text] \nNew to Clubhouse? \nHere are some quick steps on how to join Clubhouse\, a free\, audio-only app. \nThere are several ways you can get on Clubhouse. Below is just one.  \n\nClick here to join the Myositis Support club. This will open a window where you can click to get the app.\nOr\, visit the app store for your device and search for and install “Clubhouse.”\nOpen the app and create your profile. Photos are encouraged\, and having something in your bio is helpful.\nOnce you join the Myositis Support club\, you will receive notifications in the app when our rooms open. And\, you can also see our schedule of rooms\, be notified of pop-up rooms\, and more.\nWhen you join us in a Clubhouse session\, you can listen or share. We welcome the entire Myositis Community!\n\nClick to visit the Clubhouse New User Guide[/vc_column_text][vc_column_text] \nUsing Clubhouse on your computer/laptop\nThere is third-party software\, Clubdeck\, that you can download and install on your computer to use Clubhouse. Clubdeck is available for Windows and Mac OS. You can only be logged in on one device\, however. So if you use Clubdeck\, you won’t be able to have Clubhouse on your device running at the same time.  Check out Clubdeck here.[/vc_column_text][vc_empty_space] Join Myositis Support on Clubhouse 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/myositis-reads-2-2-2/2026-01-19/
LOCATION:Clubhouse
CATEGORIES:Clubhouse
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2024/01/Myositis-Reads-Event-Graphic-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:20260120T120000
DTEND;TZID=America/New_York:20260120T130000
DTSTAMP:20260115T155135Z
CREATED:20260101T131237Z
LAST-MODIFIED:20260115T155135Z
UID:10003852-1768910400-1768914000@understandingmyositis.org
SUMMARY:A Potential New Therapy for Dermatomyositis: Learn About the VALOR Study Results from a Leading Physician
DESCRIPTION:[vc_row][vc_column][vc_column_text css=””] \nTuesday\, January 20\n12 PM ET/11 AM CT/10 AM MT/9 AM PT\nJoin us for an informative webinar on the results of the VALOR study\, which tested an investigational\, once-daily oral medication for adults with dermatomyositis (DM) in the largest DM clinical trial ever conducted. In this 30-minute session\, rheumatologist Dr. Iazsmin Ventura (University of Chicago) will review the study findings and what they could mean for patients. Participants are welcome to submit questions in advance. \n  \n[/vc_column_text][/vc_column][/vc_row][vc_row][vc_column]REGISTER TO ATTEND[/vc_column][/vc_row]
URL:https://understandingmyositis.org/event/a-potential-new-therapy-for-dermatomyositis-learn-about-the-valor-study-results-from-a-leading-physician/
LOCATION:MSU Zoom Video Session\, Video session using Zoom
CATEGORIES:Video Education Session
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2026/01/2026-Webinar-Templates.png
ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260122T130000
DTEND;TZID=America/New_York:20260122T143000
DTSTAMP:20251227T212411Z
CREATED:20251227T211935Z
LAST-MODIFIED:20251227T212411Z
UID:10003227-1769086800-1769092200@understandingmyositis.org
SUMMARY:Myositis Support Gets Moving on Clubhouse
DESCRIPTION:[vc_row][vc_column] [vc_column_text] \nMyositis Support Gets MOVING!\nOn Clubhouse\n[/vc_column_text][vc_column_text] \nEvery Thursday\n1 PM ET / 12 PM CT / 11 AM MT / 10 AM PT\n[/vc_column_text][vc_empty_space height=”15px”] Join Myositis Support on Clubhouse[vc_empty_space][vc_column_text css=””] \nJoin “Myositis Support Gets Moving” on Clubhouse\nWe welcome ALL impacted by Myositis who are interested and there are NO REQUIREMENTS to participate in this group\, other than genuine interest. AND\, perhaps most importantly\, it is IMPOSSIBLE TO FAIL in this group. We will learn\, grow and progress\, together. It is not about competition. \nThis group is truly for all – at all stages of Myositis disease progression. And thus\, each participant’s plan must be personally crafted and individualized\, and in some cases\, that may require the input of a physical therapist. \nThis weekly Clubhouse Room IS: \n\na space for encouragement and support as we get moving together;\na space to talk about and create your own individualized movement and protein intake plan;\na space to talk about your successes\, struggles\, and barriers you experience with your plan;\na space to connect and find a support partner\, or find one outside of the group;\na space where NO ONE FAILS!\n\nThis weekly Clubhouse Room is NOT: \n\nan exercise class;\na set program/plan – you create your own;\nmedical or mental health advice.\n\nWhat is Myositis Support Gets Moving?\nWe know from research that movement with myositis is beneficial. As part of our Get Moving and #MyositisMovement program\, in this weekly Clubhouse room\, we will have personalized\, self-crafted individual movement goals and will encourage the use of support partners. By support partner\, we mean someone each of us chooses to partner up with and engage with weekly (or more frequently) about our progress\, successes\, and barriers in working our individualized plans. Our support partners become our partners in problem-solving\, joyful successes\, and sticktoitiveness! We may choose our support partners from someone within our group or someone we already know as a friend. \nSuggested personalized plans will focus on increased movement for health/muscle preservation\, muscle building\, and protein intake goals so that we are eating enough protein to assist in muscle preservation\, building\, and loss prevention. \nAs just a single example\, a Clubhouse group member recently shared that they utilize their assistive device to do “laps” of walking in their home while participating in groups. This could easily be or be part of an individual increased movement plan. \nTo get an accurate assessment of protein intake needs for YOU\, use the protein calculator here. \nAdditionally helpful\, is that after you get your results\, you can scroll down and see lists of good sources of protein foods and other pertinent information. We suggest going with the protein ranges shown by The American Dietetic Association or The Center for Disease Control and Prevention\, which you will see listed. \nOur group is all about growing in the direction of engaging in increased movement\, at an individual level\, to preserve and strengthen muscle and function\, while keeping a mindful eye on adequate protein intake. These behaviors can help us navigate the long-term effects of Myositis and prevent unnecessary frailty. \nNote that as always\, in ALL of our groups\, we will also be there for each other to offer support for stressors of all kinds that participants may be experiencing in their lives. \nDisclaimer: Nothing provided in the group is medical or mental health advice. Safety first. Talk to your doctor and physical and/or occupational therapist about movement that you can safely do at home. If you have a prescribed eating plan through a Registered Dietician\, you should follow that plan. And if you have kidney disease\, you likely have a specialized eating plan with lower protein and absolutely need to continue with that. Your treating physician’s prescribed advice is the guidance you need to follow.[/vc_column_text][vc_empty_space][vc_column_text] \nPreventing frailty: What Myositis Patients CAN Do\nMary Lewis shares her key takeaways from Dr. Conrad Weihl’s presentation\, “Navigating the Long Term Effects of Myositis\,” specifically on movement/exercise and nutrition for building and preserving muscle mass and preventing loss of muscle mass. \n[/vc_column_text] Read Preventing frailty: What Myositis Patients CAN Do Protein Calculator[vc_empty_space height=”25px”][vc_column_text] \nAdded Supplement and Nutrition Information\nMagnesium: \n\n10 Evidence-Based Health Benefits of Magnesium\nWhat Does Magnesium Do for Your Body?\n\n[/vc_column_text][vc_empty_space][vc_column_text] \nNew to Clubhouse? \nHere are some quick steps on how to join Clubhouse\, a free\, audio-only app. \nThere are several ways you can get on Clubhouse. Below is just one.  \n\nClick here to join the Myositis Support club. This will open a window where you can click to get the app.\nOr\, visit the app store for your device and search for and install “Clubhouse.”\nOpen the app and create your profile. Photos are encouraged\, and having something in your bio is helpful.\nOnce you join the Myositis Support club\, you will receive notifications in the app when our rooms open. And\, you can also see our schedule of rooms\, be notified of pop-up rooms\, and more.\nWhen you join us in a Clubhouse session\, you can listen or share. We welcome the entire Myositis Community!\n\nClick to visit the Clubhouse New User Guide \nUsing Clubhouse on your computer/laptop\nThere is third-party software\, Clubdeck\, that you can download and install on your computer to use Clubhouse. Clubdeck is available for Windows and Mac OS. You can only be logged in on one device\, however. So if you use Clubdeck\, you won’t be able to have Clubhouse on your device running at the same time.  Check out Clubdeck here.[/vc_column_text][vc_empty_space] Join Myositis Support on Clubhouse See All 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/myositis-support-gets-moving-on-clubhouse-2-2-2/2026-01-22/
LOCATION:Clubhouse
CATEGORIES:Clubhouse
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2024/01/MYOSITIS-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:20260123T140000
DTEND;TZID=America/New_York:20260123T150000
DTSTAMP:20260106T195329Z
CREATED:20260106T195329Z
LAST-MODIFIED:20260106T195329Z
UID:10003857-1769176800-1769180400@understandingmyositis.org
SUMMARY:Tendon Transfer for Inclusion Body Myositis (IBM)
DESCRIPTION:[vc_row][vc_column][vc_column_text css=””]Date: January 23 \nTime: 2 PM ET/1 PM ET/12 PM ET/11 AM PT \nMSU is thrilled to host an upcoming education session on Tendon Transfer Surgery for IBM patients – an option that may help improve hand function and independence. \nWhether you’re a patient\, caregiver\, or advocate\, join MSU hosts Manuel Lubinus\, CSO and Lynn Wilson\, President\, to learn more from Mass General Brigham hand surgeon\, Dr. Abhiram Bhashyam\, MD\, PhD.    There will plenty of time to ask questions of Dr. Bhashyam. \nAlso\, learn more about MSU Financial Assistance options to help defray travel expenses. \n[/vc_column_text][/vc_column][/vc_row][vc_row][vc_column]Register to Attend[/vc_column][/vc_row][vc_row][vc_column][/vc_column][/vc_row][vc_row][vc_column width=”1/2″][vc_single_image image=”43830″ img_size=”medium” css=””][/vc_column][vc_column width=”1/2″][vc_column_text css=””] \n\n\nAbhiram Bhashyam\, MD\, Ph.D.\, Research Partner\nAbhiram Bhashyam\, MD\, Ph.D.\, Hand and Upper Extremity Surgeon\, Massachusetts General Hospital\, Harvard Medical School  \nDr. Abhiram R. Bhashyam is a fellowship-trained hand and upper extremity surgeon who brings expertise in performing a wide range of simple to complex surgeries to help patients regain meaningful function of their hands and arms. He understands the deep impact hand and upper extremity problems can have on patients’ lives—treatment begins with partnering with patients to provide individualized care to achieve the best possible outcomes\, whether surgery is needed or not. \nDr. Bhashyam received his B.S. in Biomedical Engineering and Applied Math & Statistics at The Johns Hopkins University\, where he graduated with the highest honors. He received his MD from Harvard Medical School and completed his residency at the Harvard Combined Orthopedic Residency Program where he served as a chief resident. He then completed a Hand and Microvascular Surgery Fellowship at the University of Washington\, Harborview Medical Center\, and Seattle Children’s Hospital. Dr. Bhashyam also earned an MPP from Harvard Kennedy School of Government and a PhD at Utrecht University in the Netherlands. \nGuided by his drive to improve clinical outcomes\, Dr. Bhashyam has won several prestigious research awards at national and international meetings and is widely published in peer reviewed academic journals. He is passionate about ensuring optimal patient outcomes while training the next generation of residents and medical students. In recognition of his clinical care\, research and teaching\, Dr. Bhashyam received the James H. Herndon Award for resident teaching and mentoring and Best Clinical Thesis award upon graduation from residency. He is a member of the American Orthopaedic Association’s Emerging Leaders Program\, American Society for Surgery of the Hand (ASSH) and American Academic of Orthopaedic Surgeons (AAOS). \nDr. Bhashyam’s goal is to help patients get back to what they enjoy most\, often using a multidisciplinary approach. His clinical interests include hand/wrist/elbow fractures\, complex traumatic and post-traumatic reconstruction of the upper extremity\, nerve injuries and reconstruction (including brachial plexus injuries)\, treatment of stiff or unstable elbows\, wrist and elbow arthroscopy\, joint replacement or reconstruction for hand/wrist/elbow arthritis and pediatric hand surgery. Many of his patients also see him for old injuries that never properly healed\, debilitating pain or nagging injuries that impair quality of life. \n“You have to listen first and only by listening can you learn how to help your patient.” \nRead full Bio and watch the video at:  https://www.massgeneral.org/orthopaedics/doctors/22431/Abhiram-Bhashyam \nMassachusetts General Research Approach: https://www.massgeneral.org/research/about/overview-of-the-research-institute \n\n\n[/vc_column_text][/vc_column][/vc_row]
URL:https://understandingmyositis.org/event/tendon-transfer-for-inclusion-body-myositis-ibm/
LOCATION:MSU Zoom Video Session\, Video session using Zoom
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2026/01/2026-Webinar-Templates-1.png
ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org
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