Keeping in Touch Newsletters
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World Myositis Day Resources
World Myositis Day had its foundations in the USA some years ago. Over the last few years, there’s been a collaborative effort by groups around the world: from USA, UK, Netherlands, Germany, Sweden, Norway, Czech Republic, France, Poland, India and Australia to recognise World Myositis Day on 21st September. World Myositis Day 2025, observed on…
Your patient has Myositis
Most Myositis patients are at risk of falling. They cannot get up from the floor, may have trouble getting out of any chair; have difficulty with even a few steps; have very weak shoulders and grip; have swallowing or serious lung issues, and will not tolerate normal repetitive exercise. Be patient and proceed slowly. Take…
Myositis month presented an opportunity to reflect
LAST month was dedicated to raising awareness of a progressive, currently incurable and poorly treated group of rare conditions commonly known as Myositis. Myositis is the term used to describe inflammation of the muscles, and has a number of different forms. The majority suffer from Inclusion Body Myositis (IBM) for which there is no cure…
Living the Research: Exploring What Truly matters to Myositis Patients
This is a three-part series of articles from Dr. Kevin Austin, Adjunct Professor in the Health Futures Institute’s Personalized Medicine Centre in Murdoch University, Australia. Kevin lives with IBM and conducted this patient-led research study to understand the priorities of those living with myositis and their care partners. This research and survey were partly funded…
- News | News & Events | Videos
Discussion of Changes to the NDIS
Stephen Toole, a Local Area Coordinator from the Brotherhood of St Laurence, a community partner to NDIS, answers a range of member questions relating to recent changes to the NDIS. This video was recorded on 4th April 2025. The slides Stephen refers to in his presentation are available here This video is not to be…
NDIS Changes Q & A – Slides
Following discussions at a number of Keeping In Touch meetings, members were asked to submit questions related to the recent changes to the NDIS. Stephen Toole, a Local Area Coordinator with the Brotherhood of St Laurence, who is a community partner with NDIS, joined us in a ZOOM meeting on 4th April 2025. A video…
Determining patient and carer priorities in Inclusion Body Myositis a patient-led research study
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Trish Brown, ‘How to Build Our Resilience so that when Life gets Tough, we have reserves to draw on’
Trish has a counselling background having worked as a social worker in hospitals and community health for 40 years. Her work included counselling for anxiety, depression, trauma and loss and grief both with individuals and with families. Trish is also our NSW Coordinator. Much of her experience in hospital settings was with people who had…
Current State of Myositis Understanding. Ian Cooper from the Myositis Discovery Programme
Ian Cooper, Physiotherapist in the Myositis Discovery Programme (MDP) shares his thoughts and experiences from attending Global Conference on Myositis held in Pittsburgh, USA.
Support group offers hope for those living with myositis
Published in Shepparton News June 14, 2024 With incurable diseases such as myositis, taking care of one’s mind is most important. Having a solid support system of people who have been through something similar, who understand and can help you prepare, is a massive part of that. Myositis is a rare disease where the body’s…
‘Dame’ Val takes the challenge of myositis head on
Val Dempsey… “Somebody will walk over to you and say: ‘How are you today, Val?’ And likely if you tell them, they don’t ask again.” Photo: Katarina Lloyd Jones. Myositis refers to a group of rare, incurable and progressive conditions that sees the body’s immune system turn against itself, destroying healthy muscle in the process….
Ann’s Story
Ann Reynolds has a remarkably practical and positive approach to her recent diagnosis of myositis and is now doing all she can to learn about it and share her story. “It’s what I’ve been dealt with, I can’t I do anything about it, but knowing there is support helps;’ she said. Ann had been having…
- Myo Journeys | News | Videos
Myositis is gaining awareness this May, with people advocating for better support.
MAA Rare Voices Ambassador Lachy Beckett and MAA Secretary Anita Chalmers are interviewed by WIN TV.
Congratulations and thanks to Val Dempsey
Congratulations and thanks to Val Dempsey, the current Senior Australian of the Year. Great to see you recognised for your tireless volunteer work for over 40 years with St. Johns Ambulance. Val is also our past President and lives with Polymyositis and Interstitial Lung Disease. She works hard to raise awareness for Myositis and even…
A movie called Father Stu
A movie called Father Stu was released in Australia on 12 May 2022. Check out this link: The movie stars Mark Wahlberg, Mel Gibson and Jacki Weaver and is directed by Mel Gibson‘s partner Rosalind Ross. The film follows the true life of Father Stuart Long, a boxer turned Catholic priest suffering from IBM. Please spread the word…
MAY IS MYOSITIS AWARENESS MONTH
May 2022 was a very busy month of gatherings, Online educational sessions, Media releases and Myositis advocacy work. Check out our roundup in the May/June Keeping In Touch Newsletter on our Resources page. National Meetings for Members on Zoom May 2022 – date in first week to be confirmed. Our patron Prof Allan Sturgess, Rheumatologist will focus…
Where are the treatments for the two million Australians with a rare disease?
Sunday Extra with Julian Morrow It took Christine six years and many doctors visits before being diagnosed with Myositis – a rare muscle disease. Is genetic testing helping in the diagnosis of rare diseases? And what more can be done to develop therapies when the economic incentive for pharmaceutical companies is low? Christine Lowe –…
