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X-WR-CALNAME:Myositis Support and Understanding
X-ORIGINAL-URL:https://understandingmyositis.org
X-WR-CALDESC:Events for Myositis Support and Understanding
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DTSTART;TZID=America/New_York:20260507T160000
DTEND;TZID=America/New_York:20260507T170000
DTSTAMP:20260617T201326
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:20260513T190000
DTEND;TZID=America/New_York:20260513T200000
DTSTAMP:20260617T201326
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
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260519T140000
DTEND;TZID=America/New_York:20260519T150000
DTSTAMP:20260617T201326
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:20260527T150000
DTEND;TZID=America/New_York:20260527T160000
DTSTAMP:20260617T201326
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
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