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
2. The 2nd National Conference of the Association was held at the Novotel Hotel in Wollongong Northbeach between Oct 10 -12, 2016 with approximately 90 patients and family attending.
A program of speakers including Dr. Merilee Needham (WA), Prof Sturgess (Sydney and patron of Association), Dr. Aschermann (United States TMA Medical panel), Julia McLean (Sydney speech pathologist/swallowologist), Cathy Brand (Sydney physiotherapist) and Dr. Davenport (rehab specialist) was organised. A written summary of the conference will be linked to the website in the near future.
The speakers all presented excellent papers and videos will be placed on the website in due course. 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 email@example.com
SPONSORS: 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
3. RARE DISEASES DAY – 28 February 2017 – the theme is RESEARCH!
4. VICTORIAN IBM PATIENTS – EXPRESSIONS OF INTEREST INVITED
Liam Johnson, Exercise Scientist has been granted ethics approval to conduct research into the effects of exercise on IBM. The research is subject to sufficient patient participation. If you have a clear diagnosis of sporadic IBM and are interested in learning more about the research contact Liam on firstname.lastname@example.org
or 9919 4267 or 9035 7390. The research will be conducted only in Melbourne.
5. 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.
6. UNITED STATES ANNUAL CONFERENCE 2017 – San Diego. See www.myositis.org for more information.
7. 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.
8. 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
9. 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.
10. 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 – email@example.com
or call 0421 314 138.