Myasthenia Gravis Association of Queensland Incorporated.
MG Survey Approved
Freecall 1800 802 568
News and Events
Collecting data on sufferers of myasthenia gravis
Fabulous news! Dr Stefan Blum is to be the guest speaker at the MGAQ June meeting. With plenty of time available for his talk, he will be able to share many more details about the potential for forthcoming work resulting from the data collection. As an amazing 200 surveys have now been entered, even more information from the data base will be available for him to share when members attend the meeting. Hopefully we can find some very challenging questions to ask regarding his research results.
Immunosuppression
“Survey Snippet"
Immune therapies have been used for myasthenia since the 1960s, when Prednisone was first described. A range of other therapies have been introduced since.
'Exercise Effect in MG' Pilot Study
The results of the Study are in the process of being fully documented and written-up formally and will then be available for the world to see.
We will advise when the MGAQ receives its copy and make it available to read to all interested financial members.
Mid-Year Function
| WHEN: | Sunday 16 June 2013 commencing at 10:00am for 10:30am |
| WHERE: |
Notice of Cairns Meeting
A meeting is arranged for existing members and newly diagnosed patients of Myasthenia Gravis in an informal atmosphere at the Cairns RSL Club Boardroom followed by lunch for those who wish to stay on after the meeting. Lunch will be at own expense and we would like an indication of your intention to stay for lunch so that an appropriate reservation can be made. We look forward to seeing existing members and meeting new members and their carers.
Urgent Notice
Valeant Pharmaceuticals, the Australian supplier of Mestinon© has advised of a severe shortage of Mestinon© 60mg tablets In fact, they are out of stock. It is suggested that members who are prescribed 60mg Mestinon contact their chemist to check on their stock situation. Supplies are not expected to return to normal until mid-March. Supplies of 10 mg and 180mg TimeSpan Mestinon© are not affected.
‘Exercise Effect in MG’ Pilot Study
Exercises at Home
The results of the Study are in the process of being fully documented and written-up formally and will then be available for the world to see.
We will advise when the MGAQ receives its copy and make it available to read to all interested members.
Doctor Jennifer Nitz, who conducted the Study at the University of Queensland’s Neurological, Ageing and Balance Clinic, has kindly provided the Association with a booklet entitled ‘Preventative Health – Exercise for your Bones, Strength and Balance.’
Picnic in the Park
| WHEN: | Sunday 10 March 2013 |
| TIME: | 10:30am onwards |
| WHERE: | North Pine Dam – Harrisons Pocket Picnic Grounds UBD Map 87 Ref L19 |
| WHAT DO I NEED TO BRING? | Yourself and whomever else you wish to bring along, and whatever you wish to eat and drink. (and a good mood, of course) The picnic grounds have BBQ’s and hot water is available. We suggest you bring portable seating. |
| HOW DO I GET THERE? | From the roundabout at the intersection of Gympie Rd, Anzac Avenue and Dayboro (UBD Map 98 Ref L3) Turn onto Dayboro Rd/ State Route 58. Travel along Dayboro Rd for approx. 4 km, (going through 1 roundabout) and swing left into Vores Rd. Picnic grounds are on your left after approx. 1.5km |
| RSVP: | Ring our FREECALL 1800 802 568 and tell Shirley if you are coming, but please let her know by Wednesday March 6 2013. |
Collecting data on sufferers of myasthenia gravis
As highlighted in the last Project Update, the response to our survey has been overwhelming and the Medical Fraternity are keen to explore some of the statistics further so to assist we say again that we want more sufferers (especially younger ones) to complete the questionnaires. If you can spread the word please do.
‘Exercise Effect in MG’ Pilot Study
Exercises at Home
Doctor Jennifer Nitz, who conducted the ‘Exercise Effect in Myasthenia Gravis’ Pilot Study at the University of Queensland’s Neurological, Ageing and Balance Clinic, has kindly provided the Association with a booklet entitled ‘Preventative Health – Exercise for your Bones, Strength and Balance.’
The booklet details exercises which closely match those which were undertaken by participants in the abovementioned Study and are such that they can be undertaken by people in the comfort of their own home.
