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…
Globally this month is dedicated to raising awareness of this progressive, currently incurable and poorly treated group of rare conditions. This is a time to come together for patients and carers battling this disease, as well as an opportunity to educate the public on this group of extremely rare conditions. Nationwide, Myositis patients, their families…
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…
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…
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At 48, I had it all. My career was at an all-time high, travelling nationally andinternationally, I was meeting all my life goals. A mother, a grandmother, a wife, amanager, President of a volunteer organisation, Board member and Director for variousorganisations and a co-owner of a small business with my Husband. Life was perfect, Iwas…
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Our President Christine Lowe has passed on the Workshop Outputs from the recent Rare Voices Australia Summit. Our Association was represented by Christine and our RVA ambassadors Lachy Beckett and Katie Alexander.
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…
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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. In discussions arranged with the Federal…
Ilana Strous discusses the role of a Speech Pathologist and the supports available to Myositis members experiencing difficulty with Speech and/or Swallowing.
Robyn & Gordon discuss with the people from the Drive-able Podcast, their journey with obtaining a Wheelchair Modified Vehicle. Drive-able Podcast has a number of interesting videos here
Ian Cooper, Physiotherapist in the Myositis Discovery Programme (MDP) shares his thoughts and experiences from attending Global Conference on Myositis held in Pittsburgh, USA.
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…
Mental Health resources for those living with Myositis.
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….
