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X-WR-CALNAME:Myositis Support and Understanding
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X-WR-CALDESC:Events for Myositis Support and Understanding
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DTSTART;TZID=America/New_York:20260519T140000
DTEND;TZID=America/New_York:20260519T150000
DTSTAMP:20260506T171153Z
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: http://gvv.e55.mytemp.website/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:20260506T211021Z
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:20260625T120000
DTEND;TZID=America/New_York:20260625T123000
DTSTAMP:20260624T152510Z
CREATED:20260623T172959Z
LAST-MODIFIED:20260624T152510Z
UID:10011118-1782388800-1782390600@understandingmyositis.org
SUMMARY:Your Diagnosis is Our Focus!
DESCRIPTION:[vc_row][vc_column][vc_column_text css=””] \nThursday\, June 25th\n12 PM ET/11 AM CT/10 AM MT/9 AM PT\n  \nJoin our friends at Plasma Services Group to discuss a new study to improve disease detection\, diagnostics\, and patient care for those with Polymyositis. \nLearn more about how you can participate in an at-home blood donation from Mike Delahanty\, Olivia Albertson and Susan Czekay (PSG) and get compensated![/vc_column_text]Register Here[/vc_column][/vc_row][vc_row][vc_column width=”1/2″][vc_single_image image=”44778″ img_size=”medium” css=””][/vc_column][vc_column width=”1/2″][vc_column_text css=””]Mike Delahanty is the Director of Donor Recruitment at Plasma Services Group (PSG)\, where he’s led strategic patient and donor engagement initiatives supporting diagnostic development and biomedical research for almost 10 years. With extensive experience in rare disease\, autoimmune\, neurology\, and infectious disease recruitment\, Mike specializes in connecting qualified participants with research programs that advance scientific discovery.  He is passionate about patient advocacy\, innovative recruitment strategies\, and building partnerships that accelerate the development of new diagnostic tools.[/vc_column_text][/vc_column][/vc_row][vc_row][vc_column width=”1/2″][vc_single_image image=”44779″ img_size=”medium” css=””][/vc_column][vc_column width=”1/2″][vc_column_text css=””]Olivia Albertson graduated from Fairfield University in May 2025 with a B.S. in Public Health. In July\, she began working at PSG as the new Donor Liaison under our Director of Donor Recruitment\, Mike Delahanty. Her favorite part of the job is being able to connect with donors nationwide and coordinate activities and projects that mean so much to them. She’s looking forward to marking one year with this amazing PSG team![/vc_column_text][/vc_column][/vc_row][vc_row][vc_column width=”1/2″][vc_single_image image=”44780″ img_size=”medium” css=””][/vc_column][vc_column width=”1/2″][vc_column_text css=””]Susan Czekay graduated from Rutgers University in May 2020 with a B.A. in Biology and a minor in Sociology. She began working at Plasma Services Group in November of 2021 as a Laboratory Technician and recently stepped into a new role as PSG’s Project Manager in May. In her new position\, she works closely with Sales\, Operations\, Lab\, Shipping\, and Donor Recruitment to coordinate projects across PSG departments. Her favorite part of her job is getting to work with all departments at PSG to help execute projects that help us understand more about various diseases and drive forward progress with developing new diagnostic tools.[/vc_column_text][/vc_column][/vc_row]
URL:https://understandingmyositis.org/event/your-diagnosis-is-our-focus/
LOCATION:MSU Zoom Video Session\, Video session using Zoom
CATEGORIES:Video Education Session
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2026/06/httpsus02web.zoom_.uswebinarregisterWN__Foj2MMyQkeQkizYeTdtsA.png
ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260814T130000
DTEND;TZID=America/New_York:20260814T140000
DTSTAMP:20260803T112057Z
CREATED:20260803T103944Z
LAST-MODIFIED:20260803T112057Z
UID:10011124-1786712400-1786716000@understandingmyositis.org
SUMMARY:Palliative Care in Inclusion Body Myositis
DESCRIPTION:[vc_row][vc_column][vc_column_text] \nAugust 14\, 2026\n1 PM ET/12:00 PM CT/ 11 AM MT/10 AM PT\n  \nJoin Dr. Myma Albayda\, Associate Professor of Medicine in the Division of Rheumatology at Johns Hopkins\,  and Marlene Jansen\, caregiver to her husband Rod\, a patient with IBM as they discuss how palliative care can provide support and coping mechanisms for patients and their families. \n[/vc_column_text]Register Here[/vc_column][/vc_row][vc_row][vc_column width=”1/2″][vc_single_image image=”44893″ img_size=”full”][/vc_column][vc_column width=”1/2″][vc_column_text]Dr. Myma Albayda is an Associate Professor of Medicine in the Division of Rheumatology. She is the Director of the Rheumatology Fellowship Program\, as well as Director of the Musculoskeletal Ultrasound and Injection Clinic. [/vc_column_text][/vc_column][/vc_row]
URL:https://understandingmyositis.org/event/palliative-care-in-inclusion-body-myositis/
LOCATION:MSU Zoom Video Session\, Video session using Zoom
CATEGORIES:Video Education Session
ATTACH;FMTTYPE=image/png:https://understandingmyositis.org/wp-content/uploads/2026/07/Palliative-Care.png
ORGANIZER;CN="Myositis Support and Understanding (MSU)":MAILTO:info@UnderstandingMyositis.org
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