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 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…
MAA Rare Voices Ambassador Lachy Beckett and MAA Secretary Anita Chalmers are interviewed by WIN TV.
Globally this month is dedicated to raising awareness of this progressive, currently incurable debilitating condition. Nationwide, Myositis patients and their families are recognising May as International Myositis Awareness Month. 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…
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…
21 September Representatives of various international myositis groups and – organizations from, Australia, Canada, Czech Republic, Germany, Sweden, The Netherlands, United Kingdom and the United States of America have jointly decided to establish the World Myositis Day. This special day will be celebrated every year on September 21 from now on. On the WMD, special…
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 special lunch to celebrate MAA’s 20th Anniversary and Myositis Awareness Month Wednesday May 10, 2023 at 12.30 – 2.30pm at The Goody, 75 Goodwood Rd, Goodwood SA A private room has been reserved. Buy your own lunch and MAA will provide a birthday cake to share with coffee. Numbers are required in advance so…
PERTH See the note below about a special Family & Friends gathering on Sunday 7 May 2023. The WA group typically have quarterly informal social gatherings over lunch from noon on the first Wednesday of March, June, September and December at The Herdy, 33 Herdsman Parade, Wembly, The venue is accessible and has plenty of…
BRISBANE 25 May 2023 at 10am-12pm – Celebrating MAA’s 20th Anniversary and Myositis Awareness Month with cake at morning tea. Chermside Library, Meeting Room 3, Cnr Kittyhawke Dve & Hamilton Rd, Chermside HERVEY BAY A special fundraising event in celebration of MAA’s 20th Anniversary and Myositis Awareness Month in May. 26 May, 2023 at 9.30am…
Melbourne – East (Mulgrave) Celebrate the 20th Anniversary of MAA and Myositis Awareness Month 2 May, 2023 for lunch at 12 midday. Mulgrave Country Club Cnr of Wellington Rd and Jells Rd, MULGRAVE Contact: with any questions. Melbourne – West (Ascot Vale) 15 May 2023 for lunch at 12 midday Venue to be confirmed….
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…
SYDNEY MAA’s 20th Anniversary and Myositis Awareness Month May 2023 lunch. Wednesday 24 May 2023 at 12 noon. Social Kitchen Restaurant Ryde Eastwood Leagues Club117 Rydale RdWest Ryde NSW 2114 Contact: with any queries CENTRAL COAST GROUP We meet on the 2nd Wednesday of the month at 10am for coffee/tea Lee Rowens Garden World, Gardenia…
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…
SUMMARY ADELAIDE MAY 6-8, 2019 The Association’s 3rd National Conference was well attended by 112 Myositis patientsand carers. A very full and intensive program was enthusiastically received.The speakers were outstanding and our Association is so grateful for their expertise,passion for Myositis, commitment to patient support, and willingness to travel longdistances. The topics provided a strong…
10 Year Anniversary CONFERENCE REPORT – ADELAIDE 19 – 22 August, 2013 Monday Having met informally at registration and over drinks, our President, Trevor Neumann officially welcomed around 105 attendees, to the conference over dinner at the Arkaba Hotel. Special guests, A/Prof Alan Sturgess, Patron (Rheumatologist St George Hospital Sydney), Bob Goldberg (TMA – Washington), Prof…
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 –…
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.
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…
