BEGIN:VCALENDAR
VERSION:2.0
PRODID:-//The Myositis Association - ECPv6.18.3//NONSGML v1.0//EN
CALSCALE:GREGORIAN
METHOD:PUBLISH
X-WR-CALNAME:The Myositis Association
X-ORIGINAL-URL:https://www.myositis.org
X-WR-CALDESC:Events for The Myositis Association
REFRESH-INTERVAL;VALUE=DURATION:PT1H
X-Robots-Tag:noindex
X-PUBLISHED-TTL:PT1H
BEGIN:VTIMEZONE
TZID:America/New_York
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20240310T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20241103T060000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20250309T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20251102T060000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20260308T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20261101T060000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20270314T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20271107T060000
END:STANDARD
END:VTIMEZONE
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260517T150000
DTEND;TZID=America/New_York:20260517T200000
DTSTAMP:20260420T165618Z
CREATED:20260420T165618Z
LAST-MODIFIED:20260420T165618Z
UID:10003428-1779030000-1779048000@www.myositis.org
SUMMARY:C. Potter Memorial Classic In-person Event (Alexandria\, VA)
DESCRIPTION:Please join us for the third annual C Potter Classic with kids and adults softball game\, stadium food/pizza\, tailgating\, beers\, and fun. All in honor of our lovely Carolyn. All proceeds to The Myositis Association.
URL:https://www.myositis.org/event/c-potter-memorial-classic-in-person-event-alexandria-va/
LOCATION:McNaughton Fields\, 5300 Pole Rd\, Alexandra\, 22309\, United States
CATEGORIES:Commemorative,TMA Fundraiser
ATTACH;FMTTYPE=image/png:https://www.myositis.org/wp-content/uploads/2026/04/Image-12.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260513T133000
DTEND;TZID=America/New_York:20260513T143000
DTSTAMP:20260505T194825Z
CREATED:20260203T222701Z
LAST-MODIFIED:20260505T194825Z
UID:10003032-1778679000-1778682600@www.myositis.org
SUMMARY:Diagnosis Day: Cafe Chat Dermatomyositis (DM) Edition
DESCRIPTION:In honor of Diagnosis Days during Myositis Awareness Month this May\, join us for a special Café Chat focused on Dermatomyositis (DM). This relaxed\, informal gathering is a space to connect with others who truly understand the DM journey. \nWe’ll be sharing stories of the day we were diagnosed—the moments\, emotions\, and experiences that shaped our paths—and reflecting on how far we’ve come since then. Family members\, friends\, and loved ones are warmly encouraged to attend\, especially those you wish understood your illness a little better. \nGrab a cup of coffee\, settle in\, and join a supportive conversation rooted in connection\, understanding\, and community. You don’t have to explain DM here—we get it. This program will be hosted by TMA volunteer Krystal Harris. A special thank you to our Myositis Awareness Month sponsors argenx and Priovant! \nRegister Here
URL:https://www.myositis.org/event/diagnosis-day-cafe-chat-dermatomyositis-dm-edition/
CATEGORIES:Commemorative,Community Meetups
ATTACH;FMTTYPE=image/png:https://www.myositis.org/wp-content/uploads/2026/02/Cafe-Chat-DM-2.png
ORGANIZER;CN="TMA":MAILTO:TMA@myositis.org
LOCATION:https://us02web.zoom.us/meeting/register/zPb9VnJQSOK4TGRMLakgcQ
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260506T110000
DTEND;TZID=America/New_York:20260506T120000
DTSTAMP:20260504T141427Z
CREATED:20260126T223517Z
LAST-MODIFIED:20260504T141427Z
UID:10003022-1778065200-1778068800@www.myositis.org
SUMMARY:Diagnosis Day: Ask the Expert Immune-Mediated Necrotizing Myopathy (IMNM)
DESCRIPTION:In recognition of Myositis Awareness Month and IMNM Diagnosis Day\, The Myositis Association (TMA) invites you to a special Ask the Expert webinar focused on Immune-Mediated Necrotizing Myopathy (IMNM). This program will feature Dr. Andy Mammen\, Chief of the Muscle Disease Unit at the National Institutes of Health (NIH)\, who will share expert insights on IMNM\, including diagnosis\, current research\, and treatment considerations. \nThe webinar will be hosted by Jim Shea\, a dedicated TMA volunteer living with IMNM\, who will guide the discussion and represent the lived experience of patients navigating this rare disease. Thank you to our Myositis Awareness Month sponsor Argenx. \nRegister Here \nWhy Diagnosis Days Matter\nTMA created Diagnosis Days during Myositis Awareness Month to honor the often long\, complex\, and emotionally challenging journey to a myositis diagnosis. These days recognize both the resilience of patients and care partners and the critical importance of timely\, accurate diagnosis in improving outcomes and quality of life. We encourage TMA members to invite their family\, friends\, and broader networks to attend\, helping raise awareness of myositis within the wider community. \nThis program is designed for patients\, care partners\, healthcare professionals\, and anyone interested in learning more about IMNM and the myositis experience.
URL:https://www.myositis.org/event/diagnosis-day-ask-the-expert-immune-mediated-necrotizing-myopathy-imnm/
CATEGORIES:Commemorative,Webinar
ATTACH;FMTTYPE=image/png:https://www.myositis.org/wp-content/uploads/2026/01/Ask-the-Expert-IMNM.png
ORGANIZER;CN="TMA":MAILTO:TMA@myositis.org
LOCATION:https://us02web.zoom.us/webinar/register/WN_wuzeL_SxT8ikcGJeWIgUow
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;VALUE=DATE:20260501
DTEND;VALUE=DATE:20260601
DTSTAMP:20260508T005750Z
CREATED:20260420T171242Z
LAST-MODIFIED:20260508T005750Z
UID:10003429-1777593600-1780271999@www.myositis.org
SUMMARY:CartoonGems Myositis Awareness Month Fundraiser
DESCRIPTION:Honey Dee – May is “Myositis Awareness” Month and I am here to help get the word out for all of those affected by this rare disease.\n\n\nWatch for merchandise available in the CartoonGems online store to show your support for those affected. During the month of May ALL proceeds from “Myositis Awareness” merchandise will be split between The Myositis Association and Myositis Support and Understanding.\n\n\n\n\n\n\n#cartoongems #HoneyDee #myositis #myositisawareness #raredisease #merchandise #themyositisassociation
URL:https://www.myositis.org/event/cartoongems-myositis-fundraiser/
CATEGORIES:Commemorative,TMA Fundraiser
ATTACH;FMTTYPE=image/jpeg:https://www.myositis.org/wp-content/uploads/2026/04/Rumpf-Fundraising-image.jpg
LOCATION:https://cartoongems-shop.fourthwall.com/
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20260501
DTEND;VALUE=DATE:20260601
DTSTAMP:20260222T162237Z
CREATED:20260219T182521Z
LAST-MODIFIED:20260222T162237Z
UID:10003166-1777593600-1780271999@www.myositis.org
SUMMARY:Myositis Awareness Month 2026
DESCRIPTION:May is Myositis Awareness Month! It’s a time for the myositis community to raise our collective voices and let the world know what this rare disease is all about. It’s TMA’s mission to support those who live with myositis and their care partners by bringing awareness\, sharing resources and education\, sharing strategies for advocacy\, and building a stronger and more connected myositis community. \nTMA’s special programming is centered on Diagnosis Days for learning and connecting by sub-type of myositis\, plus incredible community-wide events. Plus! Powerful resources to help you tell your story\, support each other\, and expand the public’s understanding of myositis. In doing so\, you can shorten the wait between symptoms and diagnosis. Ultimately\, your efforts will speed up the search for better treatments and a cure. \nWith your help\, we can educate your community…and the world! \nLearn more and donate here.
URL:https://www.myositis.org/event/myositis-awareness-month-2026/2026-05-01/
CATEGORIES:Commemorative,TMA Fundraiser
ATTACH;FMTTYPE=image/png:https://www.myositis.org/wp-content/uploads/2026/02/Screenshot-2026-02-19-132352.png
ORGANIZER;CN="TMA":MAILTO:TMA@myositis.org
LOCATION:https://www.myositis.org/about-myositis/myositis-awareness-month/
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20260422
DTEND;VALUE=DATE:20260509
DTSTAMP:20260421T204240Z
CREATED:20260421T204240Z
LAST-MODIFIED:20260421T204240Z
UID:10003432-1776816000-1778284799@www.myositis.org
SUMMARY:Myositis Awareness Month 2026 Merch - Raise Awareness Year-round!
DESCRIPTION:Take the myositis awareness message year-round with new TMA merchandise for you and your furry friends! \nOrder deadline is May 8\, 2026. Eight designs are available with multiple styles\, colors\, and sizes. Your order will ship directly to you at the end of May from Custom Ink. \nWe’d love to be tagged on social media in photos of you\, your friends\, your family\, and your pets rocking TMA apparel. \nSupport TMA Here \n 
URL:https://www.myositis.org/event/myositis-awareness-month-2026-merch-raise-awareness-year-round/
CATEGORIES:Commemorative,TMA Fundraiser
ATTACH;FMTTYPE=image/png:https://www.myositis.org/wp-content/uploads/2026/04/2026-Merch.png
ORGANIZER;CN="TMA":MAILTO:TMA@myositis.org
LOCATION:https://www.customink.com/fundraising/MAM2026
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:20260227T090000
DTEND;TZID=America/New_York:20260227T170000
DTSTAMP:20260217T160602Z
CREATED:20260217T155956Z
LAST-MODIFIED:20260217T160602Z
UID:10003160-1772182800-1772211600@www.myositis.org
SUMMARY:Rare ase Day at NIH
DESCRIPTION:On Friday\, February 27\, 2026\, from 9 AM to 5 PM ET\, the NIH will host Rare Disease Day 2026\, both in-person at the NIH main campus (Natcher Conference Center) and virtually via NIH VideoCast. Be sure to stop by and say hello to the TMA team at our myositis exhibit table at the NIH.  \nFor more information and to register: Rare Disease Day at NIH | National Center for Advancing Translational Sciences. \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/rare-ase-day-at-nih/
CATEGORIES:Commemorative
ATTACH;FMTTYPE=image/png:https://www.myositis.org/wp-content/uploads/2026/02/Screenshot-2026-02-17-105918.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260224T080000
DTEND;TZID=America/New_York:20260226T170000
DTSTAMP:20260217T160708Z
CREATED:20260217T154746Z
LAST-MODIFIED:20260217T160708Z
UID:10003158-1771920000-1772125200@www.myositis.org
SUMMARY:Rare Disease Week at Capitol Hill
DESCRIPTION:This free multi-day event\, hosted by the Rare Disease Legislative Advocates\, a program of the EveryLife Foundation for Rare Diseases\, brings together rare disease advocates from across the country to make their voices heard with their Members of Congress. Participants are educated on policy proposals impacting the rare disease community and provided opportunities to advocate directly for policy change with their Members of Congress. \nLearn More \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/rare-disease-week-at-capitol-hill/
CATEGORIES:Commemorative
ATTACH;FMTTYPE=image/png:https://www.myositis.org/wp-content/uploads/2026/02/Screenshot-2026-02-17-104538.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260223T090000
DTEND;TZID=America/New_York:20260223T160000
DTSTAMP:20260217T205642Z
CREATED:20260217T160500Z
LAST-MODIFIED:20260217T205642Z
UID:10003161-1771837200-1771862400@www.myositis.org
SUMMARY:Moving Forward. Looking Ahead. An Event for Patients hosted by FDA
DESCRIPTION:The FDA will host “Moving Forward. Looking Ahead. An Event for Patients” for Rare Disease Day. Join this virtual public meeting on Monday\, February 23\, 2026\, in global observance of Rare Disease Week. Learn More. \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/moving-forward-looking-ahead-an-event-for-patients-hosted-by-fda/
CATEGORIES:Commemorative
ATTACH;FMTTYPE=image/png:https://www.myositis.org/wp-content/uploads/2026/02/Screenshot-2026-02-17-110213.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20260221
DTEND;VALUE=DATE:20260301
DTSTAMP:20260219T173456Z
CREATED:20260217T161945Z
LAST-MODIFIED:20260219T173456Z
UID:10003163-1771632000-1772323199@www.myositis.org
SUMMARY:Rare Disease Week MyoCon 2026 Scholarship Fundraiser
DESCRIPTION:Help Us Raise $5\,000 for TMA’s Patient Conference Scholarship Fund \nAttending MyoCon: TMA’s Global Myositis Patient Conference is a life-changing experience for those living with myositis and their families\, providing education\, support\, and a sense of community. This year\, for Rare Disease Week\, February 23-27\, 2026\, our goal is to bring together 50 donors and raise $5\,000 to provide conference scholarships. Your donation\, no matter the size\, helps bring hope and connection to patients who need it most. Give today and help us reach our goal.
URL:https://www.myositis.org/event/rare-disease-week-myocon-2026-scholarship-fundraiser/
CATEGORIES:Commemorative,TMA Fundraiser
ATTACH;FMTTYPE=image/png:https://www.myositis.org/wp-content/uploads/2026/02/Screenshot-2026-02-17-111652.png
ORGANIZER;CN="TMA":MAILTO:TMA@myositis.org
LOCATION:https://www.myositis.org/scholarships/
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:20250921T200000
DTEND;TZID=America/New_York:20250922T080000
DTSTAMP:20250807T180155Z
CREATED:20250807T174003Z
LAST-MODIFIED:20250807T180155Z
UID:10001877-1758484800-1758528000@www.myositis.org
SUMMARY:World Myositis Day: Illuminations
DESCRIPTION:In recognition of World Myositis Day on September 21\, Myositis Canada has arranged to have Niagara Falls (American and Canadian sides) illuminated in the 4 primary colors of the WMD logo (red\, blue\, yellow\, green). You can view the showing on the falls webcam from 10:00-10:15pm ET: https://www.earthcam.com/canada/niagarafalls/?cam=niagarafalls_str \n\n\n\nThe CN Tower in Toronto will also be illuminated that night. You can view the showing on the CN Tower webcam from sunset to sunrise: https://www.cntower.ca/live-views
URL:https://www.myositis.org/event/world-myositis-day-illuminations/
CATEGORIES:Commemorative
ATTACH;FMTTYPE=image/png:https://www.myositis.org/wp-content/uploads/2024/04/World-Myositis-Day.png
ORGANIZER;CN="Myositis Canada":MAILTO:president@myositis.ca
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250910
DTEND;VALUE=DATE:20250911
DTSTAMP:20250807T180338Z
CREATED:20250605T143729Z
LAST-MODIFIED:20250807T180338Z
UID:10001146-1757462400-1757548799@www.myositis.org
SUMMARY:Interstitial Lung Disease (ILD Day)
DESCRIPTION:TMA Supports ILD Day: Raise Awareness and Learn More About Interstitial Lung Disease \nMark your calendars for ILD Day on Wednesday\, September 10! Hosted annually during Pulmonary Fibrosis Awareness Month in September\, ILD Day is a crucial opportunity to raise awareness about Interstitial Lung Disease (ILD)\, a condition that significantly impacts many within the myositis community. \nILD is a condition where inflammation and scarring damage the tiny air sacs in the lungs\, making it increasingly difficult to breathe and get enough oxygen into the bloodstream. Common symptoms include shortness of breath\, persistent dry cough\, fatigue\, weakness\, chest discomfort\, “clubbing” of the fingertips\, loss of appetite\, and unexplained weight loss. \nBy participating in ILD Day\, you can help bring attention to this devastating condition and support efforts to improve diagnosis\, treatment\, and overall awareness of ILD in the myositis community. \nFor more information and resources\, visit ILD Day. \nTMA proudly supports ILD Day and stands with those affected by Interstitial Lung Disease. Let’s raise awareness together! \n  \n  \n  \n  \n 
URL:https://www.myositis.org/event/interstitial-lung-disease-ild-day-2/
CATEGORIES:Commemorative
END:VEVENT
END:VCALENDAR