SA Meetings
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SA Meetings

Wednesday July 20, 2022 at 1.30 – 3.30pm Wednesday September 21, 2022 at 1.30 – 3.30pm Wednesday November 16, 2022 at 1.30 – 3.30pm Hawthorn Community Centre (Hall A) 5 Frimley Grove, Hawthorn Contact: mail@myositis.org.au with any questions.

WA Meetings
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WA Meetings

PERTH September 7, 2022 at 11.15am. The WA group have quarterly informal social gatherings over lunch 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 parking. Contact mail@myositis.org.au with any questions.

QLD Meetings
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QLD Meetings

BRISBANE 18 August, 2022 at 10am-12pm Chermside Library, Meeting Room 3, Cnr Kittyhawke Dve & Hamilton Rd, Chermside HERVEY BAY 29 July, 2022 at 11am Hervey Bay Golf Club Contact: mail@myositis.org.au with any questions.

Vic Meetings
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Vic Meetings

A Victoria wide lunch meeting has been booked for 18 October 2022 at noon to coincide with National Carers Week at the Mulgrave Country Club in the large Mulgrave Room. More details will follow after the winter Covid/Flu period settles. Small localised gatherings will occur where possible. Details will be added once organised. Contact: mail@myositis.org.au with…

A movie called Father Stu
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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…

Tracy’s Journey – IBM

Tracy’s Journey – IBM

Sporadic Inclusion Body Myositis At the end of 2016, I was changing insurance companies and the new company sent me for blood tests. When the results came back, they immediately said: “we are not going to cover you, your CK levels are too high”. What the heck are CK levels, I wondered? I went off…

Gadgets, Aids and Tips to Simplify Our Lives [Updated Dec 2021]

Gadgets, Aids and Tips to Simplify Our Lives [Updated Dec 2021]

Mobility & Transport STEERING SPINNER KNOB (also called suicide knob)Easy to attach and makes turning and parking effortless.Can buy online from $20 Walkers & Scooters COMPACT WALKER The Empower Rollator is higher than most walkers which makes sitting and standing easier especially for those who are taller. The padded backrest flips forward and backward enabling…

NSW Meetings 
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NSW Meetings 

SYDNEY Tuesday 18th October, 2022 at 12 Noon Castle Hill RSL Club, 77 Castle St, Castle Hill, NSW in recognition of Carers Week Up to date vaccination status required. Contact: mail@myositis.org.au with any queries CENTRAL COAST GROUP 2nd Wednesday of the month at 10am for coffee/tea Lee Rowens Garden World, Gardenia Cafe, 72 Pacific Hwy, Ourimbah…

MAY IS MYOSITIS AWARENESS MONTH
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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…

Stephen’s Journey – Statin Induced Immune Mediated Necrotizing Myositis

Stephen’s Journey – Statin Induced Immune Mediated Necrotizing Myositis

In 2020 at the beginning of the Covid pandemic, I was in lockdown and doing lots of walking to maintain some fitness. I was also taking statins for high cholesterol.  My muscles and tendons started to hurt. I lost all strength in my legs, hips and eventually my arms and upper torso. When I stopped…

Ron’s Journey – IBM

Ron’s Journey – IBM

I used to play football and was known for my running speed but, at 43 years old I discovered I couldn’t run. That was in the mid 1990s.  Progressively over a few years I realised that I was losing strength. In 1998, I bought a pushbike to try to improve my quads. I would ride…