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X-WR-CALDESC:Events for Myositis Support and Understanding
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DTSTART;TZID=America/New_York:20260222T190000
DTEND;TZID=America/New_York:20260222T210000
DTSTAMP:20260417T070134
CREATED:20260216T184417Z
LAST-MODIFIED:20260216T185103Z
UID:10009996-1771786800-1771794000@understandingmyositis.org
SUMMARY:February 22 Sunday Clubhouse Support
DESCRIPTION:[vc_row][vc_column][vc_column_text css=””] \n#MyositisLIFE: Myositis Community Support\nOn Clubhouse\n\n[/vc_column_text][/vc_column][/vc_row][vc_row][vc_column][vc_column_text css=””] \nThis Sunday\, Feb. 22\, 2026\n7 PM ET/ 6 PM CT/5 PM MT/4 PM PT\n[/vc_column_text][/vc_column][/vc_row][vc_row][vc_column][vc_column_text css=””]Join 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. \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_column][/vc_row][vc_row][vc_column]Join Myositis Support on Clubhouse[/vc_column][/vc_row]
URL:https://understandingmyositis.org/event/february-22-sunday-clubhouse-support/
LOCATION:Clubhouse
CATEGORIES:Clubhouse
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2017/01/MSU-Sunday-Community-Support-Event-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:20260224T140000
DTEND;TZID=America/New_York:20260224T150000
DTSTAMP:20260417T070134
CREATED:20260205T102144Z
LAST-MODIFIED:20260205T105719Z
UID:10009297-1771941600-1771945200@understandingmyositis.org
SUMMARY:CAR T In Myositis : An Update on the RESET-Myositis Clinical Trial
DESCRIPTION:[vc_row][vc_column][vc_column_text]Please join MSU and Jake Chung\, PharmD and a Senior Director on the Medical Affairs team at Cabaletta Bio. During this session\, Jake  will provide a brief overview of the clinical trial process\, review key components of the immune system\, and describe how CAR T cell therapy works. He will also review the study design and recent phase 1/2 results of the RESET-Myositis clinical trial\, which is evaluating the safety and efficacy of rese-cel (CABA-201) in the treatment of myositis.[/vc_column_text][/vc_column][/vc_row][vc_row][vc_column]REGISTER TO ATTEND[/vc_column][/vc_row][vc_row][vc_column width=”1/2″][vc_single_image image=”44153″ img_size=”medium” css=””][/vc_column][vc_column width=”1/2″][vc_column_text]Jake Chung is a Senior Director on the Medical Affairs team at Cabaletta Bio\, which is the company conducting the RESET-Myositis clinical trial. In his role\, Jake works with Patient Advocacy Groups to provide education about Cabaletta Bio’s pipeline treatments and to bring patient insights to the Company. He also leads scientific communication activities for Healthcare Providers and works with Professional Societies across the autoimmune field. Jake is a pharmacist by training. He has spent the past 10 years working in the biotech and pharmaceutical industries focusing on rheumatology and neurology disease areas.[/vc_column_text][/vc_column][/vc_row][vc_row][vc_column width=”1/2″][vc_column_text css=””] \nMSU ‘Right Now Research’ and the Myositis Clinical Trials Consortium (MCTC) have developed a clear\, patient-friendly FAQ brochure on CAR T cell therapy for myositis:What CAR T cell therapy is and how it worksHow T cells are collected\, modified and infusedThe typical timeline (apheresis\, cell manufacturing\, chemotherapy pre-conditioning\, infusion and monitoring)Potential complications (CRS\, ICANS\, LICATS) and how they are managedPractical aspects of clinical trials: travel\, lodging\, caregiver role and financial supportTips directly from patients who have gone through CAR T \nDownload and share with your family. \n[/vc_column_text][/vc_column][vc_column width=”1/2″]Click to Download CAR T FAQ [/vc_column][/vc_row]
URL:https://understandingmyositis.org/event/car-t-in-myositis-an-update-on-the-reset-myositis-clinical-trial/
LOCATION:MSU Zoom Video Session\, Video session using Zoom
CATEGORIES:Video Education Session
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2026/02/Cabaletta-Webinar-.png
ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260225T110000
DTEND;TZID=America/New_York:20260225T120000
DTSTAMP:20260417T070134
CREATED:20260206T001004Z
LAST-MODIFIED:20260303T180225Z
UID:10009298-1772017200-1772020800@understandingmyositis.org
SUMMARY:Mitochondria First in Inclusion Body Myositis: A Chicken or Egg dilemma - The interplay between mitochondrial dysfunction and inflammation in IBM
DESCRIPTION:[vc_row][vc_column][vc_column_text css=””] \nWednesday\, February 25\, 2026\n11:00 AM ET (4 PM GMT)\n10 AM CT/ 9 AM MT/ 8 AM PT \nThis webinar brings recent scientific discoveries directly to the IBM community. Dr.  Rita Horvath and Dr Felix Kleefeld  will explain how mitochondrial dysfunction may initiate the disease process in IBM\, how the immune system becomes involved\, and why these findings are important for patients today. \n  \n  \n\n[/vc_column_text]REGISTER TO ATTEND[/vc_column][/vc_row][vc_row][vc_column width=”1/2″][vc_single_image image=”44161″ img_size=”large” css=””][/vc_column][vc_column width=”1/2″][vc_column_text css=””]Prof. Rita Horvath is a Professor of Neurogenetics and Honorary Consultant in Neurology at Cambridge University. She trained as a neurologist in Budapest\, Hungary and completed her PhD on mitochondrial disease.[/vc_column_text][/vc_column][/vc_row][vc_row][vc_column width=”1/2″][vc_single_image image=”44162″ img_size=”large” css=””][/vc_column][vc_column width=”1/2″][vc_column_text css=””]Dr. Felix Kleefeld MD is a board-certified neurologist specialized in neuromuscular disorders\, with a broad interest in the molecular mechanisms linking mitochondrial dysfunction\, inflammation\, and muscle degeneration[/vc_column_text][/vc_column][/vc_row][vc_row][vc_column width=”1/2″][vc_column_text css=””]Research Reference to Brain paper (paywall)  here: https://academic.oup.com/brain/article-abstract/148/9/3199/8107791#no-access-message[/vc_column_text][/vc_column][vc_column width=”1/2″][vc_column_text css=””]Patient Reference on mitochondria & IBM https://www.ibmmyositis.com/mito.htm[/vc_column_text][/vc_column][/vc_row]
URL:https://understandingmyositis.org/event/mitochondria-first-in-inclusion-body-myositis-a-chicken-or-egg-dilemma-the-interplay-between-mitochondrial-dysfunction-and-inflammation-in-ibm/
LOCATION:MSU Zoom Video Session\, Video session using Zoom
CATEGORIES:Video Education Session
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2026/02/Mitochondria_IBM.png
ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260225T150000
DTEND;TZID=America/New_York:20260225T160000
DTSTAMP:20260417T070134
CREATED:20260204T203809Z
LAST-MODIFIED:20260205T012051Z
UID:10008894-1772031600-1772035200@understandingmyositis.org
SUMMARY:Couch Critics on Clubhouse -  4th Wednesday of the Month
DESCRIPTION:[vc_row][vc_column][vc_column_text css=””] \nThe second and fourth Wednesday of each Month!\nOn Clubhouse\n3 PM ET / 2 PM CT / 1 PM MT / 12 PM PT\n[/vc_column_text][/vc_column][/vc_row][vc_row][vc_column][/vc_column][/vc_row][vc_row][vc_column][vc_column_text css=””]“Couch Critics”  on Clubhouse \nJoin us for a delightful escape into the world of film\, hosted by MSU Virtual Moderators William Robinson and Mary Oltmans. Whether you’re a patient or a care partner\, this movie club is for you!  “Couch Critics” is the perfect place to connect\, unwind\, and enjoy meaningful discussions with fellow movie enthusiasts. Don’t miss out on the fun – grab your popcorn and let’s experience the magic of movies together! Clubhouse 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][/vc_row][vc_row][vc_column][vc_column_text css=””]New 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 Couch Critics 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][/vc_row][vc_row][vc_column]Join Couch Critics on Clubhouse[/vc_column][/vc_row]
URL:https://understandingmyositis.org/event/couch-critics-on-clubhouse-4th-wednesday-of-the-month/
LOCATION:Clubhouse
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2025/09/Couch-Critics-4th-Wed.png
ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260226T130000
DTEND;TZID=America/New_York:20260226T143000
DTSTAMP:20260417T070134
CREATED:20251227T211935Z
LAST-MODIFIED:20251227T212411Z
UID:10003232-1772110800-1772116200@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-2-2-2/2026-02-26/
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:20260228T190000
DTEND;TZID=America/New_York:20260228T210000
DTSTAMP:20260417T070134
CREATED:20250910T185520Z
LAST-MODIFIED:20260131T021845Z
UID:10003730-1772305200-1772312400@understandingmyositis.org
SUMMARY:Immune-Mediated Necrotizing Myopathy Support Group
DESCRIPTION:[vc_row][vc_column][vc_message message_box_style=”outline” message_box_color=”orange” icon_fontello=”” css=””] \nStarting at 7 PM Eastern time\n(6 PM CT\, 5 PM MT\, 4 PM PT)\nIMNM / NAM Patients\, click the button below to register once to attend this and all future sessions.\n[/vc_message] REGISTER TO ATTEND[/vc_column][/vc_row][vc_row][vc_column]\n\n    \n                        \n                    \n                        Virtual Support Group Details                    \n                \n                                \n                    \n                        Virtual Support Group Policies                    \n                \n                                \n                    \n                        FAQ                    \n                \n                    \n    \n        \n\n    [vc_column_text css=””]Join fellow Immune-Mediated Necrotizing Myopathy patients for a private\, real-time group video support session and share your challenges\, hopes\, fears\, circumstances\, ask questions and talk to others going through the same or similar situations\, including the emotional aspects of Myositis life with a focus on gratitude and living our best lives. \nThis session is tailored to those diagnosed with Immune-Mediated Necrotizing Myopathy (IMNM)\, sometimes referred to as Necrotizing Autoimmune Myopathy (NAM). \nRegistration is required. After registration\, you will receive an email with details to join. See the link to register at the top of this page. \nYou do not have to turn your camera on and you will never be required to speak. \nCheck out all of our video support sessions\, and other support options. [/vc_column_text]\n\n\n    [vc_column_text css=””] \nSupport 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]\n\n			\n\n[/vc_column][/vc_row][vc_row][vc_column][vc_message style=”square” icon_fontello=”attention-alt” css=””]Running late? That’s okay. Join us anyway! Video support sessions vary in length and number of attendees but are generally 90 minutes long\, so join us anytime.[/vc_message][/vc_column][/vc_row]
URL:https://understandingmyositis.org/event/immune-mediated-necrotizing-myopathy-support-group/2026-02-28/
LOCATION:MSU Zoom Video Session\, Video session using Zoom
CATEGORIES:Video Support Sessions
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2025/09/Necrotizing-Myopathy-Support-Event-Graphic-1200-x-630-px-1.png
ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org
END:VEVENT
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