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DTSTART;TZID=America/Chicago:20260228T100000
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CREATED:20250605T143746Z
LAST-MODIFIED:20250725T234234Z
UID:10001450-1772272800-1772278200@www.myositis.org
SUMMARY:TMA Northeast Texas Myositis Support Group Meeting
DESCRIPTION:Register Here \nAttend TMA Northeast Texas Myositis Support Group: Support for Those Living with Myositis and their Care Partners \nLiving with myositis is easier with friends. TMA’s support and affinity groups offer a community where you can connect with others who truly understand your unique circumstances. Share experiences\, find helpful resources\, and gain insights on managing daily life with myositis while navigating the complexities of independence and self-care. These sessions are never recorded and camera is optional.  \nWhen?Fourth Saturday of each month (no meeting in December) at:10:00 AM – 11:30 AM CT \nJoin us for this monthly meeting to connect\, find strength\, and support each other in our myositis journeys. You are not alone – come share and learn with others like you! \n\nMessage from the Leader | Melissa Rumpf \n\n\n\n\n\n \nHello\, my name is Melissa Rumpf and I was diagnosed with IBM in 2017.  I feel very fortunate to have found TMA early in my diagnosis as they have been instrumental in helping me navigate this disease.   \n\n\n\nI have attended three (3) in-person TMA International Patient Conferences and many zoom conferences and meetings throughout the years (can’t wait for Dallas this year)!  Meeting other myositis patients and being able to share information\, our struggles and our positives with each other has been life changing for me.  I have learned so much from TMA and others weathering the ups and downs of myositis.  \n\n\n\nPrior to medically retiring in 2019\, I was a Communications Supervisor with the Las Vegas Police Department where I spent 28 years helping others.  So being part of TMA and helping others is a strong passion of mine.   \n\n\n\nMy husband is my “Rock” who helps keep me going.  We exercise 3 times weekly to keep my mobility.  My passion is traveling so we take vacations as often as we can – it keeps me going mentally and physically! \n\n\n\n“The question isn’t who is going to let me; it’s who is going to stop me”.  We all must keep up the fight! \n\n\n\nI’m looking forward to meeting you at our TMA Northeast Texas meetings! \n\n\n\nSincerely\, Melissa \nRegister Here \n\n\n\n\n\nConnect with TMA!         \n\n\n\n\n\n 
URL:https://www.myositis.org/event/tma-northeast-texas-myositis-support-group-meeting-4/2026-02-28/
CATEGORIES:Support or Affinity Group Meeting
ATTACH;FMTTYPE=image/jpeg:https://www.myositis.org/wp-content/uploads/2025/06/Northeast-Texas.jpg
ORGANIZER;CN="Melissa Rumpf":MAILTO:Rumpf@myositis.org
LOCATION:https://www.myositis.org/event/tma-northeast-texas-myositis-support-group-meeting-4/2026-02-28/
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:20260226T180000
DTEND;TZID=America/New_York:20260226T190000
DTSTAMP:20251228T194546Z
CREATED:20251228T194546Z
LAST-MODIFIED:20251228T194546Z
UID:10002119-1772128800-1772132400@www.myositis.org
SUMMARY:TMA Virginia\, West Virginia\, Northeast North Carolina Myositis Support Group Meeting
DESCRIPTION:This group meets monthly on the fourth Thursday at 6:00 PM ET. For all myositis diagnoses. \nRegister here \nWhy Attend a TMA Support Group \nTMA support groups are a place to connect\, be understood\, and feel less alone — whether you’re seeking support\, offering encouragement\, or somewhere in between. Research shows that peer support can increase feelings of belonging by up to 70% and improve overall well-being for most participants. Just as powerful\, many people who support others report improvements in their own mental and emotional health. \nEvery voice matters. Sharing experiences\, listening\, and learning from one another strengthens the myositis community and reminds us that none of us has to navigate this journey alone. \nCome for support. Come for connection. Come for community.
URL:https://www.myositis.org/event/tma-virginia-west-virginia-northeast-north-carolina-myositis-support-group-meeting/2026-02-26/
CATEGORIES:Support or Affinity Group Meeting
ORGANIZER;CN="Kaniah Gunter":MAILTO:Gunter@myositis.org
LOCATION:https://us02web.zoom.us/meeting/register/tZMkcu-rrz8tH9ILBN0VXGWdBWpTTWWdgRyF
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260224T190000
DTEND;TZID=America/New_York:20260224T203000
DTSTAMP:20251228T203259Z
CREATED:20251228T203259Z
LAST-MODIFIED:20251228T203259Z
UID:10002179-1771959600-1771965000@www.myositis.org
SUMMARY:TMA Men Managing Myositis Affinity Group Meeting
DESCRIPTION:The TMA Men Managing Myositis Affinity Group is a supportive space for men with any form of myositis to connect\, share experiences\, and find solidarity. Founded in 2022 and led by Eric Rocheleau\, this group offers a unique opportunity to engage in meaningful discussions about the challenges specific to men living with myositis. Each month\, the group meets in breakout rooms tailored to different diagnoses\, allowing for focused conversations and peer support. \nRegister Here
URL:https://www.myositis.org/event/tma-men-managing-myositis-affinity-group-meeting/2026-02-24/
CATEGORIES:Support or Affinity Group Meeting
ORGANIZER;CN="Eric Rocheleau":MAILTO:Rocheleau@myositis.org
LOCATION:https://us02web.zoom.us/meeting/register/tZUrf-6hqDMjEtW5ZdBV4gM4DI7ELYDARp2y
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/Los_Angeles:20260223T183000
DTEND;TZID=America/Los_Angeles:20260223T200000
DTSTAMP:20260217T201418Z
CREATED:20250605T143717Z
LAST-MODIFIED:20260217T201418Z
UID:10001090-1771871400-1771876800@www.myositis.org
SUMMARY:TMA Northern California Autoimmune Myositis Support Group Meeting
DESCRIPTION:Register here \nJoin the TMA Northern California Myositis Support Group: A Community for Those Living with Auto-Immune Myositis \nThe TMA Northern California Myositis Support Group is a vital resource for individuals living with autoimmune types of myositis\, including Antisynthetase Syndrome (ASyS)\, Dermatomyositis (DM)\, Interstitial Lung Disease (ILD)\, Juvenile Myositis (JM\, JDM)\, Melanoma Differentiation-Associated Gene 5 (MDA5)\, Necrotizing Myopathy (NM\, NAM\, IMNM)\, and Polymyositis (PM). This group meets every two months on the first Monday at 6:30 PM PT\, although meeting dates/times may occasionally shift based on leader availability. \nResearch shows that support groups can play a crucial role in managing chronic illnesses by reducing isolation\, providing emotional support\, and sharing important resources. This group offers a safe space to connect with others facing similar challenges\, share experiences\, and gain valuable insights into living with myositis. Whether you’re newly diagnosed or have been living with myositis for years\, you’ll find a compassionate community that understands your unique journey. \nWhen?\nFirst Monday of every other month at:\n6:30 PM PT (meeting times may change depending on leader availability) \nIf you’re living with one of the autoimmune forms of myositis\, this is a great opportunity to learn\, share\, and connect with others in Northern California. Don’t miss out on the power of community and peer support—join us and take the next step in your myositis journey!
URL:https://www.myositis.org/event/tma-northern-california-autoimmune-myositis-support-group-meeting-4/
ORGANIZER;CN="Shawna Nielsen":MAILTO:Nielsen@myositis.org
LOCATION:https://www.myositis.org/event/tma-northern-california-autoimmune-myositis-support-group-meeting-4/
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;TZID=America/New_York:20260222T170000
DTEND;TZID=America/New_York:20260222T183000
DTSTAMP:20260109T001953Z
CREATED:20251228T210016Z
LAST-MODIFIED:20260109T001953Z
UID:10002931-1771779600-1771785000@www.myositis.org
SUMMARY:TMA Rainbow Affinity Group Meeting
DESCRIPTION:TMA is proud to host the Rainbow Affinity Group\, a vital support community designed specifically for LGBTQIA+ individuals living with myositis. Founded in 2022\, this group offers a unique space to connect with others who share both a myositis diagnosis and a commitment to fostering inclusivity and respect within healthcare and beyond. \nRegister Here \nIn each monthly meeting\, you’ll find solidarity\, understanding\, and valuable resources\, all while creating connections within the broader LGBTQIA+ community. Our mission is to ensure that every LGBTQIA+ myositis patient is supported in an environment that is not only affirmative but also empowering. \nWhen?\nFourth Sunday of each month at:\n5pm ET | 4pm CT | 3pm MT | 2pm PT \nWhether you’re looking for guidance on navigating healthcare\, seeking a sense of community\, or simply wanting to connect with others who understand\, TMA’s Rainbow Affinity Group is here for you. Join us and become part of a supportive\, inclusive network where you can truly thrive.
URL:https://www.myositis.org/event/tma-rainbow-affinity-group-meeting/2026-02-22/
CATEGORIES:Support or Affinity Group Meeting
ORGANIZER;CN="Barbara Shaw":MAILTO:Shaw@myositis.org
LOCATION:https://us02web.zoom.us/meeting/register/tZwuc-ugqT0uH9eg4G3WjxGOC2jccy7kV4wj
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:20260221
DTEND;VALUE=DATE:20260222
DTSTAMP:20251228T234741Z
CREATED:20251228T234741Z
LAST-MODIFIED:20251228T234741Z
UID:10002530-1771632000-1771718399@www.myositis.org
SUMMARY:TMA Maryland\, Delaware\, District of Columbia\, Northern Virginia Myositis Support Group Meeting
DESCRIPTION:The TMA MD\, DE\, DC\, and Northern Virginia Myositis Support Group is a welcoming space for individuals living with myositis in the Maryland\, Delaware\, District of Columbia\, and Northern Virginia regions. Meeting every two months on the third Saturday at 1:00 PM ET\, this group provides a supportive environment to connect\, share experiences\, and learn from others facing similar challenges. \nWhether you’re newly diagnosed or have been managing myositis for years\, this group is here to help you navigate your journey. Through open discussions and shared stories\, you can find strength\, access valuable resources\, and reduce the isolation that often accompanies chronic illness. \nWhen?\nThird Saturday of every other month at:\n1:00 PM ET \nRegister here to secure your spot and be part of this empowering community. Join us to connect\, find support\, and take the next step in your myositis journey!
URL:https://www.myositis.org/event/tma-maryland-delaware-district-of-columbia-northern-virginia-myositis-support-group-meeting/2026-02-21/
CATEGORIES:Support or Affinity Group Meeting
ORGANIZER;CN="Angela Hopp":MAILTO:Hopp@myositis.org
LOCATION:https://us02web.zoom.us/meeting/register/tZYqdeiqqTIsGdz4dsX2WHPMKJ3-dNr-G4BA
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Los_Angeles:20260220T170000
DTEND;TZID=America/Los_Angeles:20260220T183000
DTSTAMP:20250731T182943Z
CREATED:20250605T143747Z
LAST-MODIFIED:20250731T182943Z
UID:10001570-1771606800-1771612200@www.myositis.org
SUMMARY:TMA Northern California\, Oregon & Washington IBM Support Group Meeting
DESCRIPTION:Register here! \n\n \nJoin the TMA Northern California\, Oregon & Washington IBM Support Group: Connect\, Learn\, and Find Support\n\nThis group is a welcoming community for individuals living with Inclusion Body Myositis (IBM) in Northern California\, Oregon & Washington\, although all are welcome. Meeting every month on the third Friday at 5:00 PM PT\, this group offers a supportive space to connect with others who understand the unique challenges of living with IBM. \nWhether you’re newly diagnosed or have been living with IBM for some time\, this group is here to help reduce feelings of isolation\, provide valuable resources\, and foster a sense of belonging. Join us to share experiences\, learn about available support services\, and build connections with others in your community who are navigating the same journey. \nWhen?Third Friday of every month at:5:00 PM PT \nAll are welcome to attend—no matter where you are on your myositis journey. This group is a chance to decrease loneliness\, access important resources\, and find strength in the support of others who truly understand what you’re going through. \n\n \n\n 
URL:https://www.myositis.org/event/tma-northern-california-ibm-support-group-meeting-31/2026-02-20/
CATEGORIES:Support or Affinity Group Meeting
ATTACH;FMTTYPE=image/jpeg:https://www.myositis.org/wp-content/uploads/2025/06/Northeast-Texas-1.jpg
ORGANIZER;CN="Malati Shinazy":MAILTO:Shinazy@myositis.org
LOCATION:https://www.myositis.org/event/tma-northern-california-ibm-support-group-meeting-31/2026-02-20/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260219T190000
DTEND;TZID=America/New_York:20260219T203000
DTSTAMP:20260213T144653Z
CREATED:20250605T143754Z
LAST-MODIFIED:20260213T144653Z
UID:10003035-1771527600-1771533000@www.myositis.org
SUMMARY:TMA Upstate New York Myositis Support Group Meeting
DESCRIPTION:All are welcome. Register today! \nIt’s not unusual to feel isolated and alone with a disease that no one has ever heard of and doesn’t understand. Being part of a myositis support group is an important way to share these feelings with people who know exactly what you’re going through. Research shows that this sort of social connection can also improve both physical and mental well-being. Even if you are currently in a good place managing your myositis\, consider joining. You can be an inspiration and source of strength for others! \n\n\n\n\n\n\n  \n\n\n\n\n\n 
URL:https://www.myositis.org/event/tma-upstate-new-york-myositis-support-group-meeting-3/2026-02-19/
CATEGORIES:Support or Affinity Group Meeting
ATTACH;FMTTYPE=image/png:https://www.myositis.org/wp-content/uploads/2025/04/TMA-Upstate-New-York.png
ORGANIZER;CN="Peter Winkelstein":MAILTO:Winkelstein@myositis.org
LOCATION:https://www.myositis.org/event/tma-upstate-new-york-myositis-support-group-meeting-3/2026-02-19/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20260219T183000
DTEND;TZID=America/Chicago:20260219T200000
DTSTAMP:20251229T003130Z
CREATED:20251229T003130Z
LAST-MODIFIED:20251229T003130Z
UID:10002655-1771525800-1771531200@www.myositis.org
SUMMARY:TMA Missouri and Illinois Myositis Support Group Meeting
DESCRIPTION:The TMA Missouri & Illinois Myositis Support Group is a welcoming space for individuals living with myositis. Meeting every month on the third Thursday at 6:30 PM CT\, this group provides a supportive environment to connect\, share experiences\, and learn from others facing similar challenges. \nRegister Here \nWhether you’re newly diagnosed or have been managing myositis for years\, this group is here to help you navigate your journey. Through open discussions and shared stories\, you can find strength\, access valuable resources\, and reduce the isolation that often accompanies chronic illness. \nSecure your spot and be part of this empowering community. Join us to connect\, find support\, and take the next step in your myositis journey!
URL:https://www.myositis.org/event/tma-missouri-and-illinois-myositis-support-group-meeting/2026-02-19/
CATEGORIES:Support or Affinity Group Meeting
ORGANIZER;CN="David Volk":MAILTO:Volk@myositis.org
LOCATION:https://us02web.zoom.us/meeting/register/tZYqdu6prjMvG9bNPn3hYm193xtHoyRYT2nI
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260219T170000
DTEND;TZID=America/New_York:20260219T183000
DTSTAMP:20260213T171056Z
CREATED:20260213T171056Z
LAST-MODIFIED:20260213T171056Z
UID:10001273-1771520400-1771525800@www.myositis.org
SUMMARY:TMA Adelante! Un grupo de apoyo sobre miositis para hispanohablantes
DESCRIPTION:Registrese\n\n \n\nÚnete a TMA Adelante! – Una Comunidad de Habla Hispana Avanzando Juntos \n¡Adelante! es el primer grupo de afinidad de TMA diseñado para personas de habla hispana que viven con miositis y sus cuidadores. Fundado bajo la creencia de que\, a pesar de los desafíos de la enfermedad crónica\, todos podemos seguir avanzando\, este grupo ofrece un espacio de apoyo para hispanohablantes de todo el mundo para conectarse\, compartir experiencias y encontrar fortaleza en la comunidad. \nYa sea que busques orientación\, apoyo o simplemente un lugar para conectarte con otros que entienden tu camino\, TMA Adelante! está aquí para ayudarte. Las reuniones se realizan cada dos meses\, brindando una oportunidad constante para interactuar con otros que comparten el mismo idioma y experiencia. \n¿Cuándo?El tercer jueves de cada dos meses a las:5:00 PM ET | 4:00 PM CT | 3:00 PM MT | 2:00 PM PT \nÚnete a nosotros y sé parte de esta red dinámica y solidaria mientras avanzamos juntos. Esperamos darte la bienvenida a TMA Adelante! Grupo de Afinidad. \n\n \n 
URL:https://www.myositis.org/event/tma-adelante-un-grupo-de-apoyo-sobre-miositis-para-hispanohablantes-20-2/2026-02-19/
CATEGORIES:Support or Affinity Group Meeting
ORGANIZER;CN="Veronica Fatura":MAILTO:Fatura@myositis.org
LOCATION:https://www.myositis.org/event/tma-adelante-un-grupo-de-apoyo-sobre-miositis-para-hispanohablantes-20-2/2026-02-19/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260217T180000
DTEND;TZID=America/New_York:20260217T190000
DTSTAMP:20260203T013023Z
CREATED:20260126T222210Z
LAST-MODIFIED:20260203T013023Z
UID:10003021-1771351200-1771354800@www.myositis.org
SUMMARY:Ask the Expert featuring Dr. Suur Biliciler
DESCRIPTION:Join us for an informative and supportive Ask the Expert webinar featuring Dr. Suur Biliciler\, a specialist in neuromuscular disorders and myositis care. This session will explore key aspects of diagnosis\, treatment options\, and symptom management for individuals affected by myositis. \nDr. Biliciler will share her clinical insights and answer audience questions in real time making this an excellent opportunity to learn from an expert and engage directly on topics that matter most to you. Registration is free and open to patients\, caregivers\, and clinicians. Register now to reserve your spot! \nRegister Here \nTMA’s Ask the Expert series is our most popular webinar series. It provides an opportunity for our community to get answers to their burning questions from an expert who likely has more knowledge than their local doctor. This is also a chance for the community to meet a member of TMA’s expert Medical Advisory Board or another distinguished member of the myositis medical community. Submit your question when you register!
URL:https://www.myositis.org/event/ask-the-expert-featuring-dr-suur-biliciler-2/
CATEGORIES:Webinar
ATTACH;FMTTYPE=image/png:https://www.myositis.org/wp-content/uploads/2026/01/ATE-Suur-February-2026.png
LOCATION:https://us02web.zoom.us/webinar/register/WN_WYozSik6QSKcWaPv5XHSvA
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260217T120000
DTEND;TZID=America/New_York:20260217T133000
DTSTAMP:20260224T012751Z
CREATED:20260217T155245Z
LAST-MODIFIED:20260224T012751Z
UID:10001630-1771329600-1771335000@www.myositis.org
SUMMARY:Rare Disease Day 2026: What’s Happening Now and How to Help Organized by TMA WomenWithIBM Affinity Group
DESCRIPTION:Created in 2020\, the mission of TMA WomenwithIBM Affinity Group is to improve the lives of women with inclusion body myositis through virtual connections and support that transcends geography. Meets on the third Tuesday of most months at 12 PM ET | 11 AM CT | 10 AM MT | 9 AM PT. \nFebruary’s meeting will include conversation with Carolyn Sheridan\, MPH\, and Jake Saltonstall\, MPA\, from the National Organization of Rare Diseases (NORD) on state policy and the role of state governments in policy making\, as well as advocacy and community engagement opportunities and Rare Disease Day. \n\nRegister here.
URL:https://www.myositis.org/event/tma-womenwithibm-affinity-group-meeting-3/
CATEGORIES:Support or Affinity Group Meeting
ATTACH;FMTTYPE=image/png:https://www.myositis.org/wp-content/uploads/2025/07/Women-with-IBM-General-Flyer-2023.png
ORGANIZER;CN="Nancy Marx Erickson":MAILTO:WomenwithIBM@myositis.org
LOCATION:https://us02web.zoom.us/meeting/register/tZwuduyvqz4pEtIqImIBaRa8ourzIqJaF0A2
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Denver:20260214T120000
DTEND;TZID=America/Denver:20260214T170000
DTSTAMP:20260401T203833Z
CREATED:20251228T233428Z
LAST-MODIFIED:20260401T203833Z
UID:10002471-1771070400-1771088400@www.myositis.org
SUMMARY:TMA Colorado Myositis Support Group Meeting
DESCRIPTION:This group for all myositis diagnoses meets monthly on the second Saturday. TMA support groups are a place to connect\, be understood\, and feel less alone — whether you’re seeking support\, offering encouragement\, or somewhere in between. Research shows that peer support can increase feelings of belonging by up to 70% and improve overall well-being for most participants. Just as powerful\, many people who support others report improvements in their own mental and emotional health. \nEvery voice matters. Sharing experiences\, listening\, and learning from one another strengthens the myositis community and reminds us that none of us has to navigate this journey alone. \nCome for support. Come for connection. Come for community. \nRegister Here \nAbout the Leader \n \nMeet Jim Milani\, a TMA member who was moved by the efforts of the late Marianne Moyer and the TMA Southwest Florida’s success in organizing a Myositis Symposium for Physical and Occupational Therapists for  Myositis Awareness Month. He called Rachel Bromley\, TMA’s Senior Manager of Patient Education\, Support and Advocacy to offer to organize one in his home state of Colorado. Rachel was ecstatic\, as Marianne’s vision had always been for this event to branch out to other TMA groups! One catch though – TMA Colorado had been dormant for quite some time. So she swung for the fences and said “How about reactivating the Colorado group at the same time? You can connect more PTs and OTs that way\, find a few volunteers to possibly help your efforts\, and provide and receive support for myositis along the way!” \nJim replied with one word “SURE!” And so this journey began. \nFor the past 20 years\, Jim has been a Physical Therapist and is Board Certified as a Geriatric Specialist. After several years of misdiagnoses\, he was correctly diagnosed with IBM in late 2023. Despite this\, Jim continues to pursue his love for activity and sports. He is passionate about sharing his personal and professional “fitness forward” philosophy\, helping people understand how to modify and adapt exercises to their functional level. Jim resides in Colorado with his wife\, Laura. He is a proud father of six adult children and has two grandchildren. Jim says his family and faith help him get through each day. While there is much about IBM that he cannot control\, he focuses on what he can: his attitude and effort. #justkeepswimming
URL:https://www.myositis.org/event/tma-colorado-myositis-support-group-meeting/2026-02-14/
CATEGORIES:Support or Affinity Group Meeting
ORGANIZER;CN="Jim Milani":MAILTO:Milani@myositis.org
LOCATION:https://us02web.zoom.us/meeting/register/tZMpde2pqjsrGNfydYipCNiyzhwXceHDv1jH
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260214T120000
DTEND;TZID=America/New_York:20260214T133000
DTSTAMP:20251228T205017Z
CREATED:20251228T205017Z
LAST-MODIFIED:20251228T205017Z
UID:10002239-1771070400-1771075800@www.myositis.org
SUMMARY:TMA Military Veterans with Myositis Affinity Group Meeting
DESCRIPTION:Founded in 2022\, the TMA Military Veterans with Myositis Affinity Group is a dedicated space for veterans living with myositis to find support\, share experiences\, and engage in advocacy efforts. This group is particularly focused on working towards making Inclusion Body Myositis (IBM) a presumptive condition within the VA\, and provides invaluable resources for navigating disability claims and appeals. \nEvery month\, veterans from all branches of service come together to discuss the unique challenges of living with myositis and to support each other in their journeys. Care partners are also warmly welcomed to participate. Whether you’re seeking help with your claim\, want to get involved in advocacy\, or simply need a place to connect with others who truly understand\, this group is here to support you. For all myositis diagnoses. \nRegister Here \nFor more information on IBM and VA disability\, click here.
URL:https://www.myositis.org/event/tma-military-veterans-with-myositis-affinity-group-meeting/2026-02-14/
CATEGORIES:Support or Affinity Group Meeting
LOCATION:https://us02web.zoom.us/meeting/register/tZItceiurjkuHtKWAxCsms6EtTZ65P-m4NiZ
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;TZID=Africa/Lagos:20260210T190000
DTEND;TZID=Africa/Lagos:20260210T203000
DTSTAMP:20251228T230743Z
CREATED:20251228T230743Z
LAST-MODIFIED:20251228T230743Z
UID:10002409-1770750000-1770755400@www.myositis.org
SUMMARY:TMA Africa Myositis Support Group Meeting
DESCRIPTION:This group meets monthly on the second Tuesday and is a virtual support network dedicated to individuals living with myositis in Africa and beyond. Founded in 2024 with the help of the TMA Women of Color Affinity Group\, this monthly meeting is designed to provide support\, share resources\, and create meaningful connections among English-speaking members worldwide. \nRegister Here \nWhether you’re newly diagnosed or managing myositis\, the TMA Africa Myositis Support Group offers a safe space to connect with others who truly understand the challenges of living with this rare condition. By sharing experiences and learning from each other\, we can work together to raise awareness\, provide encouragement\, and empower individuals across the continent and around the world.
URL:https://www.myositis.org/event/tma-africa-myositis-support-group-meeting/2026-02-10/
CATEGORIES:Support or Affinity Group Meeting
ORGANIZER;CN="Cynthia Ikediashi":MAILTO:Ikediashi@myositis.org
LOCATION:https://us02web.zoom.us/meeting/register/tZAvd-Chrj0oG9Fs7P7ZNXjq80N1mvnPiA_E
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20260210T180000
DTEND;TZID=America/Chicago:20260210T200000
DTSTAMP:20260120T210902Z
CREATED:20260120T210902Z
LAST-MODIFIED:20260120T210902Z
UID:10001969-1770746400-1770753600@www.myositis.org
SUMMARY:TMA Minnesota & Wisconsin Myositis Support Group Meeting
DESCRIPTION:Register Here \nJoin the TMA Minnesota & Wisconsin Myositis Support Group: Connect\, Share\, and Find Support \nThe TMA Minnesota & Wisconsin Myositis Support Group offers a welcoming space for individuals living with myositis to connect\, share experiences\, and support one another. Meeting every two months on the first Tuesday at 6:00 PM CT\, this group provides a valuable opportunity to engage with others who truly understand the challenges of living with myositis. \nWhether you’re newly diagnosed or have been managing myositis for years\, this group is here to help reduce isolation\, offer resources\, and build a sense of community. By sharing stories and learning from each other\, you’ll gain valuable insights and feel empowered to navigate your myositis journey with support from others who understand. \nWhen?\nFirst Tuesday of every two months from:\n6:00 – 8:00 PM CT \nJoin us to decrease loneliness\, access helpful resources\, and find strength in the power of community. We look forward to connecting with you! \nAbout the Leaders \n \nLindsay Guentzel is an award-winning journalist\, writer\, producer\, and podcast host whose work has been featured in The New York Times\, CBS Radio\, NPR\, ESPN\, and more. After being diagnosed with ADHD in 2021—an experience she calls the best thing to ever happen to her—she spent two years learning how to navigate life with a neurodivergent brain. Then\, in 2023\, her world shifted again with a diagnosis of Dermatomyositis associated with Anti-Synthetase Syndrome\, a collection of rare\, incurable diseases that drastically changed her daily life. \nJim “Sudz” Szudzik \n \nJames “Sudz” Szudzik  served in the U.S. Army as a Chaplain’s Assistant during the Vietnam conflict. Following his service\, Sudz earned a Bachelor of Arts in Communications from Michigan State University. Over the course of his career\, he held roles with Lansing Probate Court\, Service Beer & Wine\, Miller Brewing Company\, Philip Morris U.S.A.\, Bonanza Beverage\, New Mexico Beverage\, and the Madrigano family. He married Nancy Ann Wygert in August 1985. \nSudz was diagnosed with Inclusion Body Myositis in 2004 and has since dedicated himself to advocating for veterans with IBM and educating others about myositis. His daily life centers on faith\, family\, and friends\, embracing life’s challenges with gratitude and resilience. He also enjoys movies\, reading\, televised sports\, and collecting baseball cards. He lives in Menomonee Falls\, Wisconsin with Nancy and their dog Bodie.
URL:https://www.myositis.org/event/tma-minnesota-wisconsin-myositis-support-group-6-2/2026-02-10/
CATEGORIES:Support or Affinity Group Meeting
ATTACH;FMTTYPE=image/jpeg:https://www.myositis.org/wp-content/uploads/2025/06/Minnesota-Wisconsin.jpg
ORGANIZER;CN="Lindsay Guentzel":MAILTO:Guentzel@myositis.org
LOCATION:https://www.myositis.org/event/tma-minnesota-wisconsin-myositis-support-group-6-2/2026-02-10/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260210T160000
DTEND;TZID=America/New_York:20260210T180000
DTSTAMP:20260203T010733Z
CREATED:20260203T010733Z
LAST-MODIFIED:20260203T010733Z
UID:10001912-1770739200-1770746400@www.myositis.org
SUMMARY:Physical Therapy for Myositis hosted by Hospital of Special Surgery (HSS) New York City Myositis Support Group
DESCRIPTION:The HSS Myositis Support Group is open to people living with myositis\, their families\, and friends. \nIf this is your first time attending the HSS group meeting\, please be sure to contact the group coordinator before the meeting date in order to receive the join link. \nPLEASE RSVP TO SUZAN BEFORE THE MEETING DATE: \nSuzan Fischbein\, LCSW \nSr. Social Work Coordinator II \nemail: fischbeins@hss.edu \nSPONSORED BY \nDepartment of Social Work Programs and The Division of Rheumatology at Hospital for Special Surgery | 535 East 70th Street New York\, NY 10021
URL:https://www.myositis.org/event/hospital-of-special-surgery-hss-new-york-city-myositis-support-group-4/
CATEGORIES:Support or Affinity Group Meeting
ATTACH;FMTTYPE=image/png:https://www.myositis.org/wp-content/uploads/2025/11/Screenshot-2026-02-02-200325.png
ORGANIZER;CN="Suzan Fischbein":MAILTO:FischbeinS@HSS.edu
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260210T120000
DTEND;TZID=America/New_York:20260210T130000
DTSTAMP:20260119T103631Z
CREATED:20251209T220521Z
LAST-MODIFIED:20260119T103631Z
UID:10002113-1770724800-1770728400@www.myositis.org
SUMMARY:Partnering for Success: Understanding the Role of Your Clinical Trial Representative
DESCRIPTION:Register Here \nWhen you join a clinical trial\, you’re paired with a clinical trial representative who becomes your primary guide throughout the study. But what exactly does this role include—and how can you build a strong\, effective partnership? \nIn this webinar\, Mercedes Herrera\, an experienced Clinical Research Coordinator with the UCI Center for Clinical Research\, will walk participants through the key responsibilities of a clinical trial representative\, what communication and support you can expect\, and how to work together to ensure a smooth and informed trial experience. \nAttendees will learn practical tips for navigating questions\, reporting symptoms or concerns\, and fostering open communication that helps both you and the research team succeed. This session is designed for anyone currently participating in a clinical trial or preparing to begin one who wants to feel more confident and supported throughout the process. \nMercedes Herrera joined the University of California\, Irvine’s Neuromuscular Research Division over three years ago to contribute to the advancements of research. Her devotion for therapeutic advancements for myositis patients was strongly developed through her role as a Clinical Trial Representative\, where she worked directly with patients that have Idiopathic Inflammatory Myopathies. Her role is to assist patients in identifying the most suitable clinical trial and provide ongoing support throughout the entire duration of the study. Her passion for patient advocacy and education inspired her to volunteer for The Myositis Association\, where she can share her clinical trial experience to inform and empower patients. \nAngel Gomez started working at Azusa Unified School District in 2000 until he became very ill\, losing strength and mobility in December 2012. After being in the hospital for this condition\, which led him in a wheelchair for the rest of the year\, he was diagnosed with Dermatomyositis. Although he spent a lot of time in physical therapy learning to walk again\, after nearly a year of sun exposure and developing new rashes\, him and his dermatologist decided it was best for his health to retire again. Angel has experience being a clinical trial patient in multiple different investigational trials and can provide great insight from the patient’s perspective. In his free time\, he likes to volunteer at the local little league coaching baseball\, spending quality time with his family\, and traveling whenever he can. He is married with three children; two are in college\, and his youngest is in high school. \n 
URL:https://www.myositis.org/event/partnering-for-success-understanding-the-role-of-your-clinical-trial-representative/
CATEGORIES:Webinar
ATTACH;FMTTYPE=image/jpeg:https://www.myositis.org/wp-content/uploads/2025/12/Partnering-Feb-2026-3.jpg
LOCATION:https://events.zoom.us/ev/AnNL0Gq-mwLsZdeGRrqzXtkVZeNwZ67tad7a0PyMpxb-1Spa5akU~Av2m_NmOPPmtBan6sqj-soyfiPfYRK1ztV0lMa6bMQEWHdXMPtxsq4pKrg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20260208T150000
DTEND;TZID=America/Chicago:20260208T160000
DTSTAMP:20260107T035004Z
CREATED:20260107T035004Z
LAST-MODIFIED:20260107T035004Z
UID:10002765-1770562800-1770566400@www.myositis.org
SUMMARY:TMA Tennessee Myositis Support Group Meeting
DESCRIPTION:TMA Tennessee meets on the second Sunday of each month at 3:00 PM CT | 4:00 PM ET. Email leader Sharon Hinton at Hinton@myositis.org. Register here.
URL:https://www.myositis.org/event/tma-tennessee-myositis-support-group-meeting/2026-02-08/
CATEGORIES:Support or Affinity Group Meeting
ORGANIZER;CN="Sharon Hinton":MAILTO:Hinton@myositis.org
LOCATION:https://us02web.zoom.us/meeting/register/hf7d579LRD2BQRXNhVrVDA
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Phoenix:20260207T130000
DTEND;TZID=America/Phoenix:20260207T150000
DTSTAMP:20250805T195330Z
CREATED:20250805T194445Z
LAST-MODIFIED:20250805T195330Z
UID:10001857-1770469200-1770476400@www.myositis.org
SUMMARY:TMA Arizona & Nevada Myositis Support Group Meeting
DESCRIPTION:Register here. \nJoin us for connection\, support\, and shared experiences with others living with myositis in Arizona and Nevada. This welcoming group meets quarterly—on the first Saturday of February\, May\, August\, and November—via Zoom. Whether you’re newly diagnosed or have been living with myositis for years\, you’re invited to be part of a caring community that understands.
URL:https://www.myositis.org/event/tma-arizona-nevada-myositis-support-group-meeting/2026-02-07/
CATEGORIES:Support or Affinity Group Meeting
ATTACH;FMTTYPE=image/jpeg:https://www.myositis.org/wp-content/uploads/2025/08/Nebraska-1.jpg
ORGANIZER;CN="Linda Thomas":MAILTO:Thomas@myositis.org
LOCATION:https://us02web.zoom.us/meeting/register/tZEvce2rqjsjGtWAVyB3D7S3ph9M8SsEzma4
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260207T130000
DTEND;TZID=America/New_York:20260207T143000
DTSTAMP:20260413T162341Z
CREATED:20250801T201217Z
LAST-MODIFIED:20260413T162341Z
UID:10001693-1770469200-1770474600@www.myositis.org
SUMMARY:TMA Worldwide Myositis Support by Diagnosis
DESCRIPTION:TMA’s Worldwide Myositis Support by Diagnosis Group is open to all\, especially those without an active support group in their local area. Formally known as Nationwide\, this group has hosted international members since its inception in 2022. The meeting divides into breakout rooms by diagnosis\, and the TMA Care Partner Affinity Group meets in its own room. TMA Worldwide meets on the first Saturday of each month from 1:00 pm – 2:30 pm ET | 12:00 PM – 1:30 PM CT | 11:00 AM – 12:30 PM MT | 10 AM – 11:30 AM PT.  \nRegister here
URL:https://www.myositis.org/event/tma-worldwide-myositis-support-by-diagnosis/2026-02-07/
CATEGORIES:Support or Affinity Group Meeting
ATTACH;FMTTYPE=image/png:https://www.myositis.org/wp-content/uploads/2025/08/New-Worldwide-2.png
ORGANIZER;CN="Dave Volk":MAILTO:Volk@myositis.org
LOCATION:https://us02web.zoom.us/meeting/register/tZMuc-mtqTktHNH_sskpoHflne4zPRAkfS9y
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260207T130000
DTEND;TZID=America/New_York:20260207T143000
DTSTAMP:20250801T204659Z
CREATED:20250605T143744Z
LAST-MODIFIED:20250801T204659Z
UID:10001753-1770469200-1770474600@www.myositis.org
SUMMARY:TMA Care Partner Affinity Group Meeting
DESCRIPTION:Please note there will be no July meeting to allow our volunteers to celebrate the holiday with their families.\nJoin the TMA Care Partner Affinity Group: A Space Just for You \nBeing a care partner to someone with myositis can be emotionally and physically challenging. Whether it’s dealing with stress\, anxiety\, or the weight of daily caregiving tasks\, it’s easy to feel overwhelmed and burnt out. That’s why the TMA Care Partner Affinity Group\, founded in 2022\, provides a supportive environment specifically for those who care for someone living with myositis. \nThis group meets in its own dedicated breakout room within TMA’s Worldwide Support Group Meeting on the first Saturday of each month. It’s a safe space where you\, the care partner\, are the focus—not the patient. Here\, you can connect with others who understand your unique challenges\, share coping strategies\, and discuss how to navigate the complex healthcare system. Whether it’s accessing resources like home health aides\, meal delivery\, or transportation assistance—or finding the right words to communicate with your loved one or healthcare team—this group is here to help you through it all. \nTo learn more about accessing breakout rooms\, see ACCESSING ZOOM BREAKOUT ROOMS \nWhen?\nFirst Saturday of every month at:\n1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT \nThe emotional demands of caregiving are real\, and sometimes\, you just need a place to express frustrations\, share victories\, and lean on others who truly understand. The TMA Care Partner Affinity Group is here to provide the support\, resources\, and community you need to continue on your journey. Join us and find the strength to take care of yourself\, too. \nRegister Here \n 
URL:https://www.myositis.org/event/tma-care-partner-affinity-group-meeting-13/2026-02-07/
CATEGORIES:Support or Affinity Group Meeting
ATTACH;FMTTYPE=image/webp:https://www.myositis.org/wp-content/uploads/2025/06/Care-Partner.webp
ORGANIZER;CN="Rachel Bromley":MAILTO:Rachel@myositis.org
LOCATION:https://www.myositis.org/event/tma-care-partner-affinity-group-meeting-13/2026-02-07/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260207T110000
DTEND;TZID=America/New_York:20260207T153000
DTSTAMP:20251229T011527Z
CREATED:20251229T011527Z
LAST-MODIFIED:20251229T011527Z
UID:10002737-1770462000-1770478200@www.myositis.org
SUMMARY:TMA Southwest Florida Myositis Meeting (HYBRID)
DESCRIPTION:This group welcomes all Florida residents (and snowbirds) with myositis and their care partners to attend. This group meets four times a year in hybrid format (in-person and on zoom) every three months on the first Saturday from 11 AM-3 PM ET. \nRegister Here \nTMA support groups are a place to connect\, be understood\, and feel less alone — whether you’re seeking support\, offering encouragement\, or somewhere in between. Research shows that peer support can increase feelings of belonging by up to 70% and improve overall well-being for most participants. Just as powerful\, many people who support others report improvements in their own mental and emotional health. \nEvery voice matters. Sharing experiences\, listening\, and learning from one another strengthens the myositis community and reminds us that none of us has to navigate this journey alone. \nCome for support. Come for connection. Come for community.
URL:https://www.myositis.org/event/tma-southwest-florida-myositis-meeting-hybrid/2026-02-07/
LOCATION:HealthFit\, 5880 Rand Blvd\, Sarasota\, FL\, 34238\, United States
CATEGORIES:Support or Affinity Group Meeting
ORGANIZER;CN="Donna DeFant":MAILTO:DeFant@myositis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260205T183000
DTEND;TZID=America/New_York:20260205T203000
DTSTAMP:20260105T181121Z
CREATED:20251228T235730Z
LAST-MODIFIED:20260105T181121Z
UID:10001508-1770316200-1770323400@www.myositis.org
SUMMARY:TMA Women Of Color Affinity Group Meeting
DESCRIPTION:Register Here \nJoin TMA’s Women of Color Affinity Group: Empowerment Through Support & Advocacy \nFounded in 2019 by Holly Jones and Kaniah Gunter\, TMA’s Women of Color (WOC) Affinity Group is a vibrant support and advocacy community dedicated to uplifting women of color living with myositis. Through the powerful 3E’s—Encouragement\, Education\, and Empowerment—our mission is to unite and empower women of color affected by myositis and to advocate for their health and well-being. By providing education\, support\, resources\, and the backing of TMA’s expertise\, we are determined to reduce the disparity gap in myositis outcomes for people of color. As we foster a community of strength\, resiliency\, and inspiration; together\, we will break barriers\, challenge inequalities\, and create a future where every woman\, caregiver\, and loved one affected by myositis\, regardless of their race\, can thrive. \nEach month\, WOC come together for impactful workshops and support meetings\, empowering participants to take what they’ve learned and share awareness about myositis within their communities. Whether you’re looking for guidance\, solidarity\, or the opportunity to advocate for others\, this group offers a space for connection\, education\, and positive change. \nWhen?\nFirst Thursday of each month at:\n6:30pm ET | 5:30pm CT | 4:30pm MT | 3:30pm PT \nJoin us and become part of a movement to raise awareness\, educate others\, and empower women of color to take charge of their myositis journey. Visit our group page for more information. \nRegister Here \n\n       \nAbout the Leaders | Holly Jones & Kaniah Gunter \nIn 2003\, at the age of 19 years old Holly Jones was diagnosed with Polymyositis with Interstitial Lung Disease at a CPK level over 20\,000. In 2014\, her lung disease progressed causing her to develop Pulmonary Hypertension that required her to be on oxygen daily. After six years of being in clinical remission\, the Pulmonary Hypertension progressed into Congestive Heart Failure in October 2020. Living with diseases that attack her muscles\, lungs\, and heart; it has not stopped Holly from accomplishing her life goals. A social media entrepreneur\, Holly also serves on TMA’s Board of Directors\, as well as co-leader for TMA’s Women of Color Affinity Group\, and Support Group Leader for the Houston\, Tx regional support group.  Holly lives in Porter\, TX with her husband and children. \nKaniah Gunter\, a Nutrition Health Coach owner of Unique Guidance Nutritional Health Coaching\, LLC\, was diagnosed with dermatomyositis with NXP-2 positive (anti-MJ) and scleroderma in 2007. Kaniah graduated from The Institute for Integrative Nutrition\, one of the largest nutrition schools in the world. \nRecently she completed her certification as a Community Health Worker. She is a strong advocate for the myositis community. At TMA\, she is a regional support group leader for TMA Virginia\, West Virginia and Northwest Carolina as well as co-leader for TMA’s Women of Color affinity group. She has shared her story in many healthcare publications and social media. She serves as an inspiration for others as she demonstrates healing begins within mind\, body and spirit. Kaniah and her two beautiful children live in Norfolk\, Virginia.
URL:https://www.myositis.org/event/tma-women-of-color-affinity-group-meeting-17-2/2026-02-05/
CATEGORIES:Support or Affinity Group Meeting
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LOCATION:https://www.myositis.org/event/tma-women-of-color-affinity-group-meeting-17-2/2026-02-05/
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