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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. /www.facebook.com/watch/?v=464773856006052
Meet Val Dempsey, Dame of Grace in The Most Venerable Order of the Hospital of St John of Jerusalem
On 22nd of April at Government House, the Governor General, His Excellency General the Honourable David John Hurley AC DSC (Retd) bestowed the order of Dame of Grace in The Most Venerable Order of the Hospital of St John of Jerusalem to Val. Val’s family were in attendance to see her receive, the award was…
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 –…
Raising awareness for Myositis amongst GPs and Allied Health works.
Nov 2020 A video to raise awareness for Myositis amongst GPs and Allied Health workers, has been produced by Griffith Film School and stars Myositis patients and Dr Robert Henderson Neurologist, Brisbane.
Congratulations Anita Chalmers OAM
Our founding member of the Myositis Association Australia, Anita Chalmers, was recognised as part of the 2018 Australia Day honours with an OAM for her volunteer work for Myositis. Once diagnosed with Polymyositis in 1999, her volunteer activities in the Myositis Association began and soon extended across Australia and internationally. She forged strong ties with the US Myositis Association. leading to access to US…