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DTSTART;TZID=America/New_York:20260527T150000
DTEND;TZID=America/New_York:20260527T160000
DTSTAMP:20260617T184947
CREATED:20260506T174413Z
LAST-MODIFIED:20260506T211021Z
UID:10011109-1779894000-1779897600@understandingmyositis.org
SUMMARY:The Hidden Weight of Care: Survey Insights and Creating Your Personal Care Map
DESCRIPTION:[vc_row][vc_column][vc_column_text css=””] \nWednesday\, May 27\n3 PM ET/ 2 PM CT/1 PM MT/ 12 PM PT  \n  \nCaregiving carries emotional\, mental\, and physical demands—often over a long and unpredictable journey. This session shares insights from the MSU Carers Survey\, highlighting the unique challenges faced by those caring for loved ones with Inclusion Body Myositis (IBM). \nLed by Marlene and Rod Jansen\, this session brings both data and lived experience together. Marlene\, wife and caregiver to Rod\, played a key role in the development and delivery of the survey and will walk through its key findings and what they reveal about the realities of caregiving. \nBuilding on these insights\, Rod will introduce the concept of a “Care Map”—a simple\, visual tool to help you identify the people\, resources\, strengths\, and gaps within your caregiving network. Participants will learn how to create their own Care Map to better understand and support both the caregiver and the person receiving care.[/vc_column_text][/vc_column][/vc_row][vc_row][vc_column]REGISTER HERE[/vc_column][/vc_row][vc_row][vc_column width=”1/2″][vc_single_image image=”43818″ css=””][/vc_column][vc_column width=”1/2″][vc_column_text css=””]A retired telecom professional based in southern Ontario\, Marlene now dedicates her time and energy to caregiving\, advocacy\, and animal welfare. Her special connection to the Understanding Myositis organization comes from her role as care partner for her  husband who lives with inclusion body myositis (IBM)\, and riding the rollercoaster from diagnosis to adaptation. She also cares for her 92-year-old mother. \nHer journey as a caregiver began in 2008 when her  brother suffered a massive stroke. Since then\, she has become deeply familiar with the challenges faced by people with disabilities and their families. This firsthand experience has made her a passionate advocate for accessibility\, inclusion\, and the often-overlooked needs of caregivers. \nAt home\, she shares life with her husband\, daughter\, a devoted dog\, and a spirited cat. As a lifelong animal lover and champion for the underdog—whether two-legged or four—she strives to create compassion and understanding wherever she can.  She adores animals and has worked as a volunteer with various rescue and rehabilitation organizations.  She also provides assistance to the drug addicted and homeless women in her  community.   \nIn her  downtime she loves to crochet and confesses to spending too much time on Facebook.   [/vc_column_text][/vc_column][/vc_row][vc_row][vc_column width=”1/2″][vc_single_image image=”44621″ css=””][/vc_column][vc_column width=”1/2″][vc_column_text css=””] \nRod Jansen is a retired telecommunications professional. He worked in Canada\, USA and the Middle East. An avid tennis player\, he started falling for no reason on the tennis court and then at home. \nIn July 2021\, after several years of falling and experiencing progressive weakness in his legs and arms\, he was diagnosed with Inclusion Body Myositis (IBM). \nRod currently serves as Vice President of Myositis Canada. \n[/vc_column_text][/vc_column][/vc_row]
URL:https://understandingmyositis.org/event/the-hidden-weight-of-care-survey-insights-and-creating-your-personal-care-map/
LOCATION:MSU Zoom Video Session\, Video session using Zoom
CATEGORIES:Video Education Session
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2026/05/Myositis-Awareness-Month-Webinars.png
ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260519T140000
DTEND;TZID=America/New_York:20260519T150000
DTSTAMP:20260617T184947
CREATED:20260506T162520Z
LAST-MODIFIED:20260506T171153Z
UID:10011108-1779199200-1779202800@understandingmyositis.org
SUMMARY:Travel IS Still Possible: Accessible travel isn't a dream - it's a plan and you're ready to start
DESCRIPTION:[vc_row][vc_column][vc_column_text css=””] \nTuesday\, May 19\n2 PM ET/ 1 PM CT/ 12 PM MT/11 AM PT\nLet’s talk accessible travel with Lesli Wang and MSU!  We all know Lesli as the inventor and manufacturer of the Free2Go Rollator\, an award-winning toilet safety and mobility aid.  This device has helped shape the future of accessible and stress free\, safer  travel for myositis patients. Fueled by her passion for travel and dedication to accessibility\, Free2Go Travel\, was a natural extension  of her business. \nCome join us and share your insights with accessible travel.[/vc_column_text][/vc_column][/vc_row][vc_row][vc_column]Register Here[/vc_column][/vc_row][vc_row][vc_column width=”1/2″][vc_single_image image=”44609″ css=””][/vc_column][vc_column width=”1/2″][vc_column_text css=””]Lesli Wang is the President & CEO of Free2Go Mobility Products and Founder ofFree2Go Travel. Her journey began as a daughter and caregiver\, supporting hermother who lived with Inclusion Body Myositis. \nAs she witnessed her mom’s gradual loss of strength and independence—and thelack of safe\, dignified solutions—Lesli was driven to create something better. Shewent on to invent the patented Free2Go Rollator\, a 3-in-1 mobility solutiondesigned to provide safe toileting and restore confidence both at home and on the go. \nToday\, Lesli’s mission extends beyond innovation. Through Free2Go Travel\, she helps individuals living with mobility challenges\, including myositis\, continue to experience life fully—with greater independence\, dignity\, and the freedom to travel.[/vc_column_text][/vc_column][/vc_row][vc_row][vc_column][vc_column_text css=””]Download Free2Go Travel Brochure here: https://understandingmyositis.org/wp-content/uploads/2017/01/F2G-Travel-Brochure-Print-V6-03.04.26.pdf[/vc_column_text][/vc_column][/vc_row]
URL:https://understandingmyositis.org/event/travel-is-still-possible-accessible-travel-isnt-a-dream-its-a-plan-and-youre-ready-to-start/
LOCATION:MSU Zoom Video Session\, Video session using Zoom
CATEGORIES:Video Education Session
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2026/05/Travel-With-Lesli-Wang-1.png
ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260513T190000
DTEND;TZID=America/New_York:20260513T200000
DTSTAMP:20260617T184947
CREATED:20260506T033234Z
LAST-MODIFIED:20260506T154311Z
UID:10011107-1778698800-1778702400@understandingmyositis.org
SUMMARY:Dermatomyositis: Research\, Real Life & the Lived Experience of Patients of Color
DESCRIPTION:[vc_row][vc_column][vc_column_text css=””] \nWednesday\, May 13\n7 PM ET/ 6 PM CT/ 5 PM MT/ 4 PM PT \n  \nJoin us for a casual\, interactive fireside chat exploring new research from UAB and MSU highlighting the diagnostic and psychosocial experiences of people living with dermatomyositis\, including important disparities reported by patients of color.  This session will highlight key findings from a recent survey-based study\, with discussion led by medical students involved in the research alongside a physician providing clinical insight – Dr. Lauren Graham\, Dr. Mallory Von Lotten\, and Kyanna Williams.[/vc_column_text][/vc_column][/vc_row][vc_row][vc_column]Register Here[/vc_column][/vc_row][vc_row][vc_column width=”1/2″][vc_single_image image=”44580″ img_size=”large” css=””][/vc_column][vc_column width=”1/2″][vc_column_text css=””]Dr. Lauren Graham received her MD and PhD at University of Alabama at Birmingham (UAB). She completed her dermatology training at Northwestern University in Chicago.  She now serves as Vice-Chair for Clinical Affairs in Dermatology at UAB where she also directs the Skin Autoimmune Blistering Disease Clinic and Co-Directs the Rheumatology-Dermatology Combined Clinic.  Her clinical interests are in autoimmune skin disease.[/vc_column_text][/vc_column][/vc_row][vc_row][vc_column width=”1/2″][vc_single_image image=”44582″ img_size=”medium” css=””][/vc_column][vc_column width=”1/2″][vc_column_text css=””]Mallory Von Lotten is a fourth-year medical student at the University of Alabama at Birmingham (UAB) Heersink School of Medicine\, where she also earned her Master of Science in Biomedical and Health Sciences. She will begin her preliminary internal medicine year at Baptist Health Birmingham\, with plans to pursue a career in dermatology. Mallory is deeply committed to advancing health equity\, with a particular focus on skin of color and improving representation in dermatologic education and clinical research. Her work spans multiple peer-reviewed publications and national presentations\, including projects on acne treatment disparities\, clinical trial participation\, and dermatologic conditions in underrepresented populations. She is passionate about community engagement and has led initiatives aimed at increasing awareness and trust in clinical research among minority communities.[/vc_column_text][/vc_column][/vc_row][vc_row][vc_column width=”1/2″][vc_single_image image=”44581″ img_size=”medium” css=””][/vc_column][vc_column width=”1/2″][vc_column_text css=””]Kyanna W. Johnson\, MPH\, is a medical student with a background in public health and a passion for health equity. Her work focuses on improving care for underserved populations through research\, education\, and advocacy. As someone living with myositis\, Kyanna brings a unique perspective that bridges clinical knowledge and lived experience\, helping to highlight the challenges patients face and the importance of patient-centered\, inclusive care.[/vc_column_text][/vc_column][/vc_row][vc_row][vc_column][vc_column_text][/vc_column_text][/vc_column][/vc_row]
URL:https://understandingmyositis.org/event/dermatomyositis-research-real-life-the-lived-experience-of-patients-of-color/
LOCATION:MSU Zoom Video Session\, Video session using Zoom
CATEGORIES:Video Education Session
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2026/05/Skin-of-Color-.png
ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260507T160000
DTEND;TZID=America/New_York:20260507T170000
DTSTAMP:20260617T184947
CREATED:20260501T005833Z
LAST-MODIFIED:20260504T021152Z
UID:10011105-1778169600-1778173200@understandingmyositis.org
SUMMARY:Pain as an under recognized symptom of Myositis
DESCRIPTION:[vc_row][vc_column][vc_column_text css=””] \nThursday\, May 7\n4 PM ET/ 3 PM CT/ 2 PM MT/ 1 PM PT\n  \nPain is a critical but often overlooked symptom in myositis. This webinar will empower patients\, caregivers\, and healthcare professionals with the knowledge to recognize\, assess\, and address pain in IIM\, fostering better patient-centered care. Don’t miss this opportunity to engage with Dr. Saygin and advance your understanding of pain in myositis! \n[/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=”43852″ img_size=”large” css=””][/vc_column][vc_column width=”1/2″][vc_column_text css=””]Dr. Didem Saygin is a clinician researcher and rheumatologist with a focus on inflammatory muscle diseases and autoimmune interstitial lung diseases. She is the director of the Rush Myositis Program at the Division of Rheumatology at Rush University Medical Center and co-director of the Rush Autoimmune Lung Diseases Clinic. Dr. Saygin’s research focuses on outcome measures and pain in myositis and is currently supported by the Rheumatology Research Foundation and other organizations. She also serves as the Vice Chair of the International Myositis Society.[/vc_column_text][/vc_column][/vc_row][vc_row][vc_column][vc_column_text]Myositis Support and Understanding Groundbreaking paper on Pain in Myositis:\nhttps://academic.oup.com/rheumatology/article/62/1/264/6586791?login=false&guestAccessKey= \n[/vc_column_text][/vc_column][/vc_row]
URL:https://understandingmyositis.org/event/pain-as-an-under-recognized-symptom-of-myositis/
LOCATION:MSU Zoom Video Session\, Video session using Zoom
CATEGORIES:Video Education Session
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2026/04/Pain-with-Didem-Saygin-1.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:20260617T184947
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:20260617T184947
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:20260617T184947
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:20260617T184947
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:20260617T184947
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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