Ilana Strous discusses what a Speech Pathologist can offer those with Myositis
Ilana Strous discusses the role of a Speech Pathologist and the supports available to Myositis members experiencing difficulty with Speech and/or Swallowing.
Robyn and Gordon Burnett discuss obtaining their Wheelchair Modified Vehicle
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
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. /www.facebook.com/watch/?v=464773856006052
May is Myositis Awareness Month
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…
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…
AMAZING NEWS! The World Myositis Day – WMD – was founded!
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
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…
SA Meetings
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…
WA Meetings
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…
QLD Meetings
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…
Vic Meetings
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: mail@myositis.org.au with any questions. Melbourne – West (Ascot Vale) 15 May 2023 for lunch at 12 midday Venue to be confirmed….
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…
NSW Meetings
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: mail@myositis.org.au 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 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…