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X-WR-CALNAME:The Myositis Association
X-ORIGINAL-URL:https://www.myositis.org
X-WR-CALDESC:Events for The Myositis Association
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DTSTART;TZID=America/New_York:20260826T160000
DTEND;TZID=America/New_York:20260826T170000
DTSTAMP:20260810T212516Z
CREATED:20260810T212150Z
LAST-MODIFIED:20260810T212516Z
UID:10003569-1787760000-1787763600@www.myositis.org
SUMMARY:Understanding Veteran Directed Care: What Veterans Need to Know
DESCRIPTION:For many veterans living with myositis\, staying independent at home while managing a complex health condition can be a challenge — especially when daily tasks like bathing\, dressing\, meal preparation\, or mobility become harder to manage alone. Veteran Directed Care (VDC) is a VA program designed to help eligible veterans remain safely in their own homes by giving them a flexible budget to hire and direct their own caregivers\, including\, in many cases\, family members or friends. \nJoin us for this informative Ask the Expert webinar as Amanda Icenhower\, LCSW\, Coordinator of the Veteran Directed Care Program at the Southern Oregon Rehabilitation Center and Clinics\, walks us through how the VDC program works\, who qualifies\, and how veterans and their families can access these services. This session is especially relevant for veterans living with myositis who need support with activities of daily living but want to maintain choice and control over their care. \nAmanda will cover: \n\nWhat Veteran Directed Care is and how it differs from other VA home care programs\nEligibility requirements and how to apply\nHow the flexible spending budget works and what it can be used for\nHow veterans can hire family members or trusted individuals as caregivers\nWhere to go for more information and how to get started\n\nWhether you’re a veteran\, a care partner\, or a family member helping navigate care options\, this webinar will provide practical\, actionable information to help you understand this valuable — and often underutilized — VA benefit. \nREGISTER HERE \nSpeaker: Amanda Icenhower\, LCSW\, is the Coordinator of the Veteran Directed Care Program at the Southern Oregon Rehabilitation Center and Clinics (SORCC) in White City\, Oregon\, where she helps veterans access person-centered\, self-directed home care services.
URL:https://www.myositis.org/event/understanding-veteran-directed-care-what-veterans-need-to-know/
CATEGORIES:Webinar
ATTACH;FMTTYPE=image/jpeg:https://www.myositis.org/wp-content/uploads/2026/08/VDC-Aug-2026.jpg
ORGANIZER;CN="TMA":MAILTO:TMA@myositis.org
LOCATION:https://us02web.zoom.us/webinar/register/WN_zTttSSv4TpaYvxhVI3GX5w
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260707T120000
DTEND;TZID=America/New_York:20260707T130000
DTSTAMP:20260707T145934Z
CREATED:20260609T204440Z
LAST-MODIFIED:20260707T145934Z
UID:10003535-1783425600-1783429200@www.myositis.org
SUMMARY:Diet and Nutrition Challenges in Myositis: Entry Points to the FAST for DM Trial
DESCRIPTION:This webinar will review different nutrients and diets and what is known about their effects on autoimmune diseases. Speakers Kirstin Zambell\, PhD\, RD\, Clinical Research Dietitian at National Institutes of Health (NIH) and Lisa Rider\, MD\, Pediatric Rheumatologist and Head of the Environmental Autoimmunity Group at National Institute of Environmental Health Sciences\, National Institutes of Health (NIH NIEHS) will also introduce a new clinical trial at the NIH\, FAST for DM. This is a study focused on examining the effects of dietary interventions on dermatomyositis\, including omega-3 fatty acids and a general healthy eating pattern diet. \nRegister Here
URL:https://www.myositis.org/event/diet-and-nutrition-challenges-in-myositis-entry-points-to-the-fast-for-dm-trial/
CATEGORIES:Webinar
ATTACH;FMTTYPE=image/png:https://www.myositis.org/wp-content/uploads/2026/06/NIH-Nutrition-Webinar-2.png
LOCATION:https://us02web.zoom.us/webinar/register/WN_736wLZkQRDmySU1YynIYgA
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260528T120000
DTEND;TZID=America/New_York:20260528T130000
DTSTAMP:20260527T004316Z
CREATED:20260227T011101Z
LAST-MODIFIED:20260527T004316Z
UID:10003183-1779969600-1779973200@www.myositis.org
SUMMARY:Enriching your Life with Assistive Technology
DESCRIPTION:As we close out Myositis Awareness Month\, join us for a special webinar focused on empowering individuals living with myositis to explore the world of assistive technology — and how it can help you live more independently\, comfortably\, and fully. \nWe are thrilled to welcome Monique Chabot\, PhD\, OTD\, OTR/L\, FAOTA\, SCEM\, CLIPP\, CAPS\, Associate Director of Assistive Technology at the Institute on Disabilities at Temple University\, as our featured speaker. Monique is a licensed Occupational Therapist and design researcher with deep expertise in assistive technology\, aging in place\, smart home technology\, and inclusive design. She earned a PhD in Architecture and Design Research at Thomas Jefferson University\, where her work focuses on integrating smart technology to support independent living. An accomplished clinician and researcher\, Monique was recently honored with induction into the AOTA Roster of Fellows in recognition of her outstanding contributions to the field of occupational therapy. \nMonique represents TechOWL (Technology for Our Whole Lives)\, Pennsylvania’s designated Assistive Technology Act Program\, housed within the Institute on Disabilities at Temple University’s College of Education and Human Development. As one of 56 AT Act programs across the United States\, TechOWL connects people of all ages and abilities across Pennsylvania with the tools and technology they need to live\, work\, learn\, and communicate more independently — at no cost. \nDuring this webinar\, we’ll explore how assistive technology can address the unique challenges faced by those living with myositis\, including tools that support mobility\, communication\, daily living\, and more. We’ll also take a closer look at TechOWL’s Assistive Technology Lending Library — a free resource of assistive devices to borrow and trial before making any purchasing decisions. Whether you’re newly diagnosed or have been navigating myositis for years\, this is a valuable opportunity to discover resources that could make a meaningful difference in your everyday life. \nThis webinar will be hosted by Immediate Past Board Chair Laurie Boyer. \nDon’t miss this inspiring conversation to close out Myositis Awareness Month! \nRegister Here
URL:https://www.myositis.org/event/enriching-your-life-with-assistive-technology/
CATEGORIES:Webinar
ATTACH;FMTTYPE=image/png:https://www.myositis.org/wp-content/uploads/2026/02/2-Assistive-Technology-1.png
ORGANIZER;CN="TMA":MAILTO:TMA@myositis.org
LOCATION:https://us02web.zoom.us/webinar/register/WN_UTVhbKV5Q6GgjKp5whFp_A
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260501T080000
DTEND;TZID=America/New_York:20260501T150000
DTSTAMP:20260421T193948Z
CREATED:20251021T194332Z
LAST-MODIFIED:20260421T193948Z
UID:10001899-1777622400-1777647600@www.myositis.org
SUMMARY:TMA Open - Tee it up during Myositis Awareness Month\, supporting myositis research and patient well-being!
DESCRIPTION:Chip in for a great cause during Myositis Awareness Month at our TMA Open!\nRegister Now! \nSupport myositis research and patient well-being on Friday\, May 1 at 9:00 AM (check-in 8:00 AM) at Blue Ridge Shadows Golf Course in Front Royal\, VA. \n\nFormat: Captain’s Choice\nPrice: Teams $500 | Individual $150 | Virtual golfers welcome!\nAwards: 1st\, 2nd\, and 3rd Place Teams; Longest Drive; Closest to the Pin\nAll golfers eligible to win high-value prizes: Golf prizes include brand-new Titleist Vokey wedge with 60-degree loft\, Callaway Micro Pro laser rangefinder\, and Shadows Club membership! Additional prizes include a special Avon gift basket\, plus ticket packages from the Washington Wizards (NBA)\, Washington Nationals (MLB)\, DC United (MLS)\, and more.\nSponsorships: Hole Sponsorship with tee box signage for $500 or Tournament Sponsorship including foursome with premium tee box signage\, club house signage\, and digital ad for $1\,500\nRegistrations due: By 4/25/2026 and payments due: By 4/30/2026\nRemit: Register and donate securely online with credit card or PayPal payment\, or via Venmo: @themyositisassociation.\n\nIncludes golf\, cart\, range balls\, lunch plus team and individual prizes. On course games\, 50/50\, and mulligans for sale! \nJoin Us! \n \n \nThank you to our sponsor\, Peake Technologies. Questions? Contact Ike Eichenbrenner: eichenbren@gmail.com | 703-599-4345 \n“Golfweek Magazine” ranked #3 Best Public Course in Virginia!
URL:https://www.myositis.org/event/tma-open-2026/
LOCATION:Blue Ridge Shadows Golf Club\, 456 Shadows Drive\, Front Royal\, VA\, 22630\, United States
CATEGORIES:Commemorative,Community Meetups,TMA Fundraiser
ATTACH;FMTTYPE=image/png:https://www.myositis.org/wp-content/uploads/2025/10/Tee-off-for-TMA-2026-220-x-220-px.png
ORGANIZER;CN="Ike Eichenbrenner":MAILTO:eichenbren@gmail.com
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260331T120000
DTEND;TZID=America/New_York:20260331T130000
DTSTAMP:20260323T143109Z
CREATED:20260203T144135Z
LAST-MODIFIED:20260323T143109Z
UID:10003025-1774958400-1774962000@www.myositis.org
SUMMARY:Living with Myositis: Real Talk about Steroids\, Side Effects\, and Support
DESCRIPTION:TMA and Sam are joining forces for Autoimmune Awareness Month — and we’re closing it out with a conversation you won’t want to miss! Together\, we’re bringing the myositis and autoimmune communities into an open\, honest dialogue about one of the most common — and complex — parts of living with myositis: long-term steroid use. \nThis dynamic webinar featuring Matt Wilkinson\, PhD\, MBA\, on behalf of Sam\, will focus on the physical\, emotional\, and practical realities of steroid therapy and the support Sam provides for people living with myositis who rely on long-term treatment. From managing side effects to learning how to advocate for your needs within the healthcare system\, this conversation is designed to reflect the real experiences of the steroid-treated community. Whether you’re newly diagnosed or years into your journey\, you’ll leave feeling informed\, supported\, and better equipped to take an active role in your care. \nDon’t miss this powerful close to Autoimmune Awareness Month — because navigating myositis is better when we do it together. \nRegister Here
URL:https://www.myositis.org/event/living-with-myositis-real-talk-about-steroids-side-effects-and-support/
CATEGORIES:Webinar
ATTACH;FMTTYPE=image/jpeg:https://www.myositis.org/wp-content/uploads/2026/02/AD-HOC-Webinar-2.jpg
LOCATION:https://us02web.zoom.us/webinar/register/WN_T56cbdh3SnyC55pMKmQ7rg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260326T180000
DTEND;TZID=America/New_York:20260326T190000
DTSTAMP:20260325T203435Z
CREATED:20260316T185618Z
LAST-MODIFIED:20260325T203435Z
UID:10003293-1774548000-1774551600@www.myositis.org
SUMMARY:Proclamation50 Office Hours
DESCRIPTION:Learn more about TMA’s Proclamation50 Initiative\, our aspiration to spur proclamations in all 50 states in the US for Myositis Awareness Month in May! A proclamation is an official declaration by a government recognizing the importance of understanding\, diagnosing\, and supporting those affected by these rare diseases.  \nOn March 26 at 6 pm ET\, Jamie Batiste\, our Proclamation50 director\, will be hosting Proclamation 50 Office Hours where you can learn more about this initiative and ask any questions. \nRegister Here \nJamie can also be reached at proclamations@myositis.org.
URL:https://www.myositis.org/event/proclamation50-office-hours-2/
CATEGORIES:Community Meetups
ATTACH;FMTTYPE=image/png:https://www.myositis.org/wp-content/uploads/2026/02/Screenshot-2026-02-06-161539.png
ORGANIZER;CN="Jamie Batiste":MAILTO:Proclamations@myositis.org
LOCATION:https://us02web.zoom.us/j/89300037319
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20260228
DTEND;VALUE=DATE:20260301
DTSTAMP:20260225T161450Z
CREATED:20260217T161053Z
LAST-MODIFIED:20260225T161450Z
UID:10003162-1772236800-1772323199@www.myositis.org
SUMMARY:Share Your Rare in Honor of Rare Disease Day 2026
DESCRIPTION:Rare Disease Journeys Community Survey  \nFor Rare Disease Day on February 28th\, 2026\, TMA wants to hear from you! Share your tips for navigating a rare medical journey in myositis and what you and your family do to overcome isolation\, connect with others\, and make your rare experience easier. \nShare your story here. \nAre you participating in a Rare Disease Day event? Please email tma@myositis.org to let us know where you are participating. \nVisit TMA’s website for more events honoring rare disease awareness!
URL:https://www.myositis.org/event/share-your-rare-in-honor-of-rare-disease-day-2026/
CATEGORIES:Commemorative
ATTACH;FMTTYPE=image/png:https://www.myositis.org/wp-content/uploads/2026/02/Screenshot-2026-02-17-110743.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260211T180000
DTEND;TZID=America/New_York:20260211T200000
DTSTAMP:20260206T211813Z
CREATED:20260206T211813Z
LAST-MODIFIED:20260206T211813Z
UID:10003034-1770832800-1770840000@www.myositis.org
SUMMARY:Proclamation50 Office Hours
DESCRIPTION:Learn more about TMA’s Proclamation50 Initiative\, our aspiration to spur proclamations in all 50 states in the US for Myositis Awareness Month in May! A proclamation is an official declaration by a government recognizing the importance of understanding\, diagnosing\, and supporting those affected by these rare diseases.  \nOn February 11th at 6 pm ET\, Jamie Batiste\, our Proclamation50 director\, will be hosting Proclamation 50 Office Hours where you can learn more about this initiative and ask any questions. \nRegister Here \nJamie can also be reached at proclamations@myositis.org.
URL:https://www.myositis.org/event/proclamation50-office-hours/
CATEGORIES:Community Meetups
ATTACH;FMTTYPE=image/png:https://www.myositis.org/wp-content/uploads/2026/02/Screenshot-2026-02-06-161539.png
LOCATION:https://us02web.zoom.us/meeting/register/iwbt_gGIStqwzMm2GQXngQ
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20260201
DTEND;VALUE=DATE:20260301
DTSTAMP:20260217T162312Z
CREATED:20260217T162312Z
LAST-MODIFIED:20260217T162312Z
UID:10003164-1769904000-1772323199@www.myositis.org
SUMMARY:Rare Disease Awareness Events for February
DESCRIPTION:Celebrate Rare Disease Day all month with rare disease events from TMA\, FDA\, and NIH! Rare Disease Day is a global initiative to raise awareness and generate support for everyone who is on a rare medical journey. To see the list of events\, visit our Rare Disease Awareness page:  Rare Disease Awareness – The Myositis Association \n\nRare Medical Journeys in Myositis Survey (closes 2/28)\nMyoCon Scholarship Fundraiser\n2/17: State Policy and Advocacy for RDD Webinar hosted by TMA’s WomenWithIBM Affinity Group\n2/23: FDA Rare Disease Day 2026 Public Meeting\n2/24-2/27: EveryLife Foundation for Rare Diseases Rare Disease Week\n2/27: NIH Rare Disease Day 2026
URL:https://www.myositis.org/event/rare-disease-awareness-events-for-february/
CATEGORIES:Commemorative
ATTACH;FMTTYPE=image/png:https://www.myositis.org/wp-content/uploads/2026/02/Screenshot-2026-02-17-105453.png
ORGANIZER;CN="TMA":MAILTO:TMA@myositis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260116T120000
DTEND;TZID=America/New_York:20260116T130000
DTSTAMP:20251229T002240Z
CREATED:20250605T143735Z
LAST-MODIFIED:20251229T002240Z
UID:10002018-1768564800-1768568400@www.myositis.org
SUMMARY:TMA New Member Orientation
DESCRIPTION:Open to all regardless how long ago you joined TMA! Living with myositis can be challenging\, but you are not alone. Please join us virtually to learn more about education and resources to help you on your myositis journey and make new friends who know\, understand\, and share your new normal. Connect with people like you\, connect with resources you need\, connect with global myositis experts – connect with TMA!\nRegister Here
URL:https://www.myositis.org/event/new-member-orientation-8/
CATEGORIES:Community Meetups
ATTACH;FMTTYPE=image/png:https://www.myositis.org/wp-content/uploads/2025/06/Generic-NMO-.png
LOCATION:https://www.myositis.org/event/new-member-orientation-8/
END:VEVENT
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