1.  MYOSITIS IN MAY  – AWARENESS MONTH

  • On average it takes more than 3 years and 5 doctors visits to obtain a diagnosis
  • A great deal of damage to muscles can be done during this wait
  • Raising awareness for the symptoms of Myositis will reduce this wait
  • Symptoms can be as simple as difficulty rising from a seated position or raising your arms over your head
  • Starting a treatment plan early gives the best chance of maintaining a quality of life

Myositis QuickFacts Symptoms

 

2. CONFERENCE: SAVE THE DATE

Planning is well underway for the 3rd National Conference of the Association to be held in Adelaide on 6th – 8th May, 2019 at Rydges Hotel, South Terrace.

Call the hotel directly on 08 82160300 to book rooms. Cost presently $129.

 

 

A program of great speakers is being organised including:

Dr. Merilee Needham (WA neurologist);

Prof Sturgess (NSW and patron of Association, rheumatologist);

Dr. Christina Liang (NSW neurologist);

Dr Vidya Limaye (SA rheumatologist);

Dr. Katrina Reardon (Vic neurologist);

Dr. Helene Alexanderson (Karolinska Institute, Sweden – physiotherapist and researcher into exercise and myositis);

Dr. Lisa Christopher-Stine (Director of the Johns Hopkins Myositis centre in USA, rheumatologist who, with other colleagues, made the discovery of the link between statins and myositis).

 

The proposed cost of the conference is $225 for early birds and $285 for late comers. The cost will include the daily program, lunches, morning and afternoon teas and Welcome dinner. The optional Farewell dinner will cost an extra $55. Final costs will be settled once the results of grant applications is known.

 

More news to follow.

 

3. RARE DISEASES DAY  – 28 February every year 

4. CLINICAL TRIAL RECRUITING
Patients with Polymyositis, Dermatomyositis, Autoimmune Necrotising Myositis, Overlap Myositis and Juvenile Myositis over the age of 18 are being recruited for a Phase 3 clinical trial by Bristol Myers Sqibb being conducted in NSW, QLD and WA.
The title for the trial is “Trial to Evaluate the Efficacy and Safety of Abatacept subcutaneous in Combination with Standard Therapy Compared to Standard Therapy alone in Improving Disease activity in the adults with active Idiopathic Inflammatory Myopathy”.
The contact Hospital is Fiona Stanley Hospital in Perth. The code for the trial is NCT02971683.
5. 2ND NATIONAL CONFERENCE  – OCT 2016, WOLLONGONG The speakers all presented excellent papers. A summary of the presentations is available under Resources on this site.  4 x two hour DVD’s covering all sessions of the Conference have been prepared and are available for sale at $10 for the set or $15 for non-Conference attendees – contact Dan Joyce for more information – 02 49733616 or danterry1946@tpg.com.auSPONSORS: We were very grateful for financial support from the following organisations:
Novartis Pharmaceuticals Australia – www.novartis.com
CSL Behring – www.cslbehring.com.au
Veolia Mulwaree Trust – www.mulwareetrust.org.au
Bendigo Bank – Nowra Community Bank – www.bendigoadelaide.com.au
6. DIFFICULTIES WITH SWALLOWING? – listen to Dr. Julia Maclean
At the March 2015 meeting of the Association, Dr. Julia Maclean gave a presentation focussed on the difficulties which some myositis patients experience with swallowing. Her excellent presentation was well received and was recorded on video. The video can be viewed on the website under the Resources section.
7. UNITED STATES ANNUAL CONFERENCE September 2018 – See www.myositis.org for more information.
8. IBM SURVEY – 85 Australians completed the international survey of IBM patients about their experiences of living with IBM by the deadline of 22 Dec 2014.. This represented 16.25 percent of the 523 respondents. The researchers are very excited by the response rate and thank all of our members who contributed. Special thanks to Treasurer Richard Gysi for coordinating the Australian involvement.
9. NEW MOBILITY AID  – a personal emergency alarm with a wider coverage than a cordless phone. The product has been developed in WA and uses the same cell network as mobile phones. The cost is $249 but for holders of Seniors cards the cost is reduced to $200.  See: www.mobile-alert.com.au
10. TV INTERVIEW – Our Committee Members Anita Chalmers (Sec) and Lachy Beckett (Young Adults/JDM) appeared on WINTV (18 Dec 2014)  in Wollongong raising awareness for Myositis. The rate of occurrence of this rare disease in the Shoalhaven area was one of the topics discussed.
11. WELCOME  to the website of The Myositis Association-Australia Incorporated. We are a non-profit organisation run entirely by volunteers. Membership is open to anyone with an interest in Myositis and costs only $10 per year. If you have any queries or information you would like to share with us, please contact our Secretary Anita Chalmers – mail@myositis.org.au or call 0421 314 138.