News

After months of planning the 2019 MAA Myasthenia Gravis Conference was huge success! Such a lot of energy and conversation went into reaching out across Australia with New Zealand captured as well. The result was 147 registrations, reaching full capacity for our volunteer team.

The room looked great, the energy reverberated, and the presentations came quickly. It was a very special day for people with a rare disease to come together and realise that they were not alone.

Feedback from the day reflected the warmth and generosity offered by an amazing group of Specialists who shared their knowledge and compassion. Conversation from these Doctors included helping us to understand how Rituximab works, why there is a tightening guideline to IVIg prescriptions and why patients should not be fearful, what is Therapeutic Plasma Exchange, and can it be a possible option for some patients.

Myasthenia Gravis Friends Western Australia

Coffee & Chat 

Sunday, 11 August at 2 pm - Pinnacles Restaurant

(upstairs in Myers) 200 Murray Street, Perth

We are seeking people with myasthenia gravis (MG) to help us better understand the impact of MG on levels of physical activity and sitting time.

Participation involves completing an online survey and wearing two small, lightweight activity monitors for seven consecutive days as you go about your normal day to day life, and then answering some questions about your activity levels.

For more information and to access the survey:

The Myasthenia Gravis Association of Queensland Inc.

Annual General Meeting

WHEN: Sunday, 8 September - 10.00am for 10.15am sharp

WHERE: Aspley Hornets Football Club, 50 Graham Road, Carseldine

Lunch is available at the venue with a varied and reasonably priced menu. Tea and coffee will be available prior to the meeting.

Welcome - Mrs Susan White MAA President, Mrs Carol Buchanan Conference MC

Dr Stefan Blum - “Overview of Myasthenia Gravis and its Therapies”

Dr James Morton - “Plasma Exchange and Other Advanced Therapies for Myasthenia Gravis”

Dr David McEniery - “Update on Myasthenia Gravis Survey”

Prof. Pam McCombe - “IVIg for Myasthenia - New IVIg Guidelines”

Dr Fiona Chan - “Rituximab as Treatment of Myasthenia Gravis”

Tahlia Alsop - UQ Physiotherapist and Researcher - Keeping Active is Important to your Mind and Body.

Assoc. Prof. Stephen Reddel - Research Discussion

Dr Stefan Blum - Sero-Negative: How does this Make Things More Difficult?

Prof. Pamela McCombe - Blood Bank and IVIg Your questions answered. 

Nicole Millis - How the ‘Rare Voices Australia’ organisation can help people with Myasthenia Gravis

You only have until Friday, 12 July to register for this unique chance to hear from 12 speakers on 22 topics talk about the different Myasthenias and aspects of living with/caring for MG sufferers, the latest treatment options and areas of research into MG.

For more information about the conference or your interest to register,
Freecall: 1800 802 568 or Email: info@mgaq.org.au. 

The MAA website has been upgraded and it is fantastic.

Do check it out by visiting www.myastheniaallianceaustralia.com.au

This wonderful work has been gifted to the Alliance by Anna Wilen Clarke. A graphic designer by trade and a generous supporter of the Alliance she saw the great need and responded to the challenge. Work progressed quickly and the new site is full of great features. Our most sincere appreciation is extended to Anna. Her skill and generosity is very much appreciated. Her practical offer of support for others is keenly felt.

To celebrate Awareness Month the Committee again hosted a function on Sunday, 9 June allowing people with Myasthenia to gather together and to share. Well attended by regulars and by first timers, we gave hugs, wore teal ribbons, won lucky door prizes, shared a meal and conversation and came away much better informed.