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DTSTART;TZID=America/New_York:20260225T110000
DTEND;TZID=America/New_York:20260225T120000
DTSTAMP:20260501T113256
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:20260224T140000
DTEND;TZID=America/New_York:20260224T150000
DTSTAMP:20260501T113256
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:20260211T100000
DTEND;TZID=America/New_York:20260211T110000
DTSTAMP:20260501T113256
CREATED:20260203T015345Z
LAST-MODIFIED:20260204T123700Z
UID:10006894-1770804000-1770807600@understandingmyositis.org
SUMMARY:Understanding Clinical Trials In Myositis: NK Cell Research in Current Myositis Studies
DESCRIPTION:[vc_row][vc_column][vc_column_text css=””] \nWednesday\, February 11\, 2026 \n10 AM ET/ 9 AM CT/ 8 AM MT/ 7 AM PT \nJoin us for an educational webinar focused on clinical trials and the  potential of NK cell therapy’s role in current myositis research.  Learn more about new emerging cell therapies for dermatomyositis\, polymyositis\, immune-mediated necrotizing myopathy and Antisynthetase Syndrome from one of our community’s most trusted specialists – Dr. Lisa Christopher-Stine\, MD\, MPH\, along with Dr. Shawn Rose\, MD\, PhD\, Chief Medical Officer and Head of Research & Development\, Nkarta Inc.  [/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=”44067″ img_size=”medium” css=””][/vc_column][vc_column width=”1/2″][vc_column_text css=””]Lisa Christopher-Stine\, MD\, MPH\, Professor of Medicine and Neurology; Director of the Johns Hopkins Myositis Center  \nIn the intricate world of autoimmune disease\, Dr. Lisa Christopher-Stine stands as a pillar of innovation\, compassion\, and scientific discovery. As a Professor of Medicine and Neurology at The Johns Hopkins University School of Medicine and the esteemed Director of the Johns Hopkins Myositis Center\, she is a world-renowned leader whose work has fundamentally reshaped the understanding and treatment of inflammatory muscle diseases. \nDr. Christopher-Stine’s journey began with a distinguished academic foundation\, graduating with honors from Franklin & Marshall College with induction into the Phi Beta Kappa Honor Society and earning her medical degree from Hahnemann University\, where she was inducted into the prestigious Alpha Omega Alpha Honor Society. She further fortified her expertise with a Master of Public Health from the Johns Hopkins Bloomberg School of Public Health and a subsequent rheumatology fellowship at Johns Hopkins\, setting the stage for a career defined by excellence. \nA true clinician-scientist\, Dr. Christopher-Stine’s research has been nothing short of transformative. Her most significant contribution was the co-discovery of the anti-HMGCR autoantibody\, which defined a new subtype of statin-associated immune-mediated necrotizing myopathy. This groundbreaking work created a new diagnostic paradigm\, enabling clinicians worldwide to identify and treat patients who were previously misdiagnosed. Her prolific research\, evidenced by an H-index of 61 and over 130 original publications\, is anchored by her role as the principal investigator for the Johns Hopkins Myositis Research Registry—a global cohort of over 3\,000 patients that serves as a vital resource for myositis studies. \nHer leadership and influence are recognized through numerous accolades. She is consistently named one of America’s Top Doctors by Castle Connolly and was honored with The Arthritis Foundation’s Medical Champion Award. Alongside her team\, she received The Myositis Association’s Medical Hero Award\, a testament to their collective impact. Her international standing is further cemented by prestigious invitations such as\, the Canadian Rheumatology Association Dunlop-Dottridge Lectureship\, the Health Manpower Development Plan Visiting Expert from the Singapore Ministry of Health\, and the Bilka Visiting Professorship at the Mayo Clinic. \nBeyond her research\, Dr. Christopher-Stine is a dedicated educator and a passionate advocate for patient-centered care. She co-chairs an international OMERACT initiative to develop patient-reported outcome measures\, ensuring the patient perspective is integral to clinical trials. Patients describe her as a knowledgeable and deeply compassionate physician who\, as one patient stated “cares about the whole me\, not just my myositis.” \nThrough her visionary leadership of the Myositis Center\, her pioneering research\, and her unwavering dedication to her patients\, Dr. Lisa Christopher-Stine is not just treating a disease; she is transforming lives and building a legacy of hope for the entire myositis community. \n [/vc_column_text][/vc_column][/vc_row][vc_row][vc_column width=”1/2″][vc_single_image image=”44070″ img_size=”medium” css=””][/vc_column][vc_column width=”1/2″][vc_column_text css=””]Shawn Rose\, MD\, PhD\, Chief Medical Officer and Head of Research & Development\, Nkarta Inc.  \nShawn Rose\, MD\, PhD\, is Chief Medical Officer (CMO) and Head of Research & Development at Nkarta Inc. During his career\, Dr. Rose has brought forward more than a dozen programs from discovery into clinical development\, and he has developed multiple pioneering approved medicines such as Sotyktu™\, Stelara™ and Tremfya™. \nAs Chief Development Officer\, Immunology at Vividion Therapeutics\, Dr. Rose led the Vividion and Bayer strategy to advance a portfolio of novel immunology assets targeting previously undruggable proteins. As Senior Vice President and Head of the Clinical Development Organization at Magenta Therapeutics\, he developed cell-based therapeutics for patients with cancer\, genetic disorders\, and autoimmune diseases. At Annexon Biosciences\, he led autoimmunity clinical development. \nDr. Rose served as Senior Director of Immunology Translational Science and Medicine (TSM) at Johnson & Johnson (J&J)\, where he headed the clinical team responsible for the design and execution of early clinical studies. At J&J\, he also served as the disease area strategic leader for rheumatology and autoimmunity within TSM\, led a registrational program in systemic lupus erythematosus\, and was Stelara compound development team leader for rheumatologic indications. Prior to joining J&J\, Dr. Rose was at Bristol Myers Squibb (BMS)\, where he led clinical development programs as a director within BMS Immunoscience and co-chaired the Translational Research and Development Committee. \nDr. Rose was an attending physician at the NIH Clinical Center and volunteered at multiple community clinics in the Washington D.C. area. He completed his internal medicine residency and clinical and research fellowship in the Rheumatology Division at Northwestern University. Dr. Rose has been an R&D and corporate advisor to biotech companies and venture capital firms\, helped to launch new biotech companies\, and has served on multiple scientific advisory boards. He enjoys mentoring youth as well as the next generation of physicians\, scientists\, and biotech and pharmaceutical leaders in their career journey.[/vc_column_text][/vc_column][/vc_row]
URL:https://understandingmyositis.org/event/understanding-clinical-trials-in-myositis-nk-cell-research-in-current-myositis-studies/
LOCATION:MSU Zoom Video Session\, Video session using Zoom
CATEGORIES:Video Education Session
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2026/02/2026-Webinar-Templates-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:20260501T113256
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:20250830T110000
DTEND;TZID=America/New_York:20250830T181500
DTSTAMP:20260501T113256
CREATED:20250705T230227Z
LAST-MODIFIED:20250705T230227Z
UID:10003053-1756551600-1756577700@understandingmyositis.org
SUMMARY:MYOCONNECT Summit - A Call to Action
DESCRIPTION:[vc_row][vc_column]\n\n    \n                        \n                    \n                        Summit Details                    \n                \n                                \n                    \n                        Summit Agenda                    \n                \n                                \n                    \n                        FAQ                    \n                \n                    \n    \n        \n\n    [vc_column_text css=””]We are excited to invite you to register now for the MYOCONNECT Virtual Summit\, hosted by Myositis Support and Understanding (MSU). This landmark event marks the launch of the MYOCONNECT Education and Empowerment Forum\, a new platform dedicated to putting patients’ voices first through trusted\, patient-focused education and powerful resources.  \nSummit Date: August 30th | 11 AM – 6 PM EST  \nThis year’s theme is “A Call to Action” — because after 10 years of supporting the Myositis community\, this community is DONE waiting. It is time to move beyond patience and start creating waves of change together. Whether you are a patient\, caregiver\, medical professional\, or advocate\, this summit will equip you with the knowledge\, tools\, and inspiration to make your voice heard and spark real progress.  \nJoin us for engaging sessions\, inspiring speakers\, and meaningful conversations that empower every member of the Myositis community  \nRegister today to secure your spot:  MYOCONNECT Summit   \nBe part of this historic moment — let us take action\, together! [/vc_column_text]\n\n\n    [vc_column_text css=””] \nMYOCONNECT: Education & Empowerment Summit\nTheme: A Call to Action\nDate: Saturday\, August 30\, 2025\nLocation: Virtual via Zoom\nTime: 11:00 AM – 6:10 PM \n\nAgenda\nWelcome Remarks: Putting Patients First in Our DNA \n\nTime: 11:00 – 11:15 AM\nSpeakers: Elisa Glass\, Jerry Williams\nDescription: Kick off the day with a reminder that patients are at the heart of our mission. Commit to a “patient-first” ethos.\n\nThe Voice of the Patient- Research Driven by Patients \n\nTime: 11:20 AM – 12:20 PM\nSpeakers: Manuel Lubinus\, Shirley\, Rod\, Marlene Jansen\nDescription: Discover how patient experiences shape care. Key insights from the Pain and Burden of Care Papers.\n\nHow CAR T‑Cell Therapy is Changing Research and Clinical Trials \n\nTime: 12:25 – 1:25 PM\nSpeaker: Dr. Gandgia\nDescription: Explore how CAR T-cell therapy is revolutionizing rare disease treatment and clinical trials.\n\nMidday Refresh & Recharge \n\nTime: 1:25 – 2:25 PM\n\nIgniting the Fire – A New Age of Advocacy \n\nTime: 2:25 – 3:05 PM\nSpeakers: Kyanna Williams\, Corene Canaan\nDescription: Young adults demand visibility and action. Learn how they are transforming rare disease advocacy.\n\nKourage Health Movement Class \n\nTime: 3:10 – 3:40 PM\nInstructor: Cooper Lee\nDescription: Join us for a dynamic 30-minute exercise session led by Cooper Lee\, an exercise specialist from Kourage Health\, a non-profit organization dedicated to empowering individuals with serious health conditions.\n\nHealth Insurance 101: Denials\, Appeals\, and Self-Advocacy \n\nTime: 3:45 – 4:45 PM\nSpeaker: Michelle Vogel\nDescription: Navigate insurance challenges with expert tips on turning denials into approvals.\n\nLegislative Advocacy: Turning Stories into Policy \n\nTime: 4:50 – 5:20 PM\nSpeakers: Corene Canaan\, Kendall Rump\, Elisa Glass\nDescription: Transform personal stories into legislative change.\n\nFighting Medical Gaslighting: The Power of Being Heard \n\nTime: 5:25 – 6:05 PM\nSpeaker: Mackenzie Abraham\nDescription: Empower yourself to overcome medical dismissal and advocate confidently.\n\nClosing Reflections: We Are the Change \n\nTime: 6:05 – 6:10 PM\nSpeakers: Elisa Glass\, Jerry Williams\nDescription: Reflect on our progress and commit to continued change for the rare disease community.\n\n\nJoin us for a day of learning\, empowerment\, and advocacy![/vc_column_text]\n\n\n    [vc_column_text css=””]Who is hosting this event? \nMYOCONNECT Summit is hosted by Myositis Support & Understanding (MSU)\, a patient-centered nonprofit dedicated to education\, support\, and advocacy for all forms of Myositis. \n Is the MYOCONNECT Summit free to attend? \nYes! This is a completely free event hosted by Myositis Support & Understanding (MSU). We believe access to education\, community\, and empowerment should never come with a financial barrier. \nDo I need to attend the entire day? \nNot at all! You’re welcome to join us for the full summit or drop in and out based on your schedule and energy. Each session is designed to stand alone\, so you can participate in the way that works best for you. \nWho should attend? \nThis summit is for anyone impacted by Myositis—patients\, care partners\, family members\, and supporters—as well as health professionals and advocates who want to learn more. \nWhat if I miss a session? \nRegistrants will receive access to the the recordings from the MYOCONNECT Summit after the event\, so you won’t miss out even if you can’t make it live. \n[/vc_column_text]\n\n			\n\n To Register[/vc_column][/vc_row]
URL:https://understandingmyositis.org/event/myoconnect-summit-a-call-to-action/
LOCATION:MSU Zoom Video Session\, Video session using Zoom
CATEGORIES:Video Education Session
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2025/07/Summit-Webpage-2.png
ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org
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