News

THE eNID PROJECT

Because of the social distancing restrictions, the June MGAQ Members' Meeting will still go ahead using technology instead of face-to-face.

We have organised a Guest Speaker, Dr Angelo Contarino, Clinical Psychologist. His talk is “My Metropolis Journey with MG”. He will present via zoom webinar and there will be the facility for participants to ask questions of the presenter. 

The MAA continue to pursue the opportunity for more equitable access by the Myasthenia community to the treatment option, Rituximab/MabThera.

This month the story is ALL about the exciting opportunity to represent the Myasthenia Gravis Community in Canberra, celebrating Rare Diseases Day along with the Rare Voices Australia team. Witnessing the launch, from Health Minister Greg Hunt, of the National Strategic Action Plan for Rare Disease was a privilege. Strong bi-partisan support and commitment to this Action Plan was made evident in the speeches from Shadow Minister Chris Bowen,

Administered by the Myasthenia Gravis Association of Queensland Inc.

The Myasthenia Gravis Australia Parents & Grandparents Facebook page has been established for Parents and Grandparents of children (under 25 years old) diagnosed with Myasthenia Gravis.

In our February Newsletter, we talked about a new Podcast service for 2020 targeted to further improve members knowledge and understanding of matters related to their Myasthenia Gravis (MG). One of the podcast series is entitled ‘Ask the Expert’.

This Series allows members to ask general questions about MG, its impact and how to better cope, the various types of treatment options, etc. These questions will be incorporated into a recorded discussion with a relevant expert and from the recording, a podcast will be produced for distribution to members.

As people with a chronic illness, particularly inclusive of those who are immune suppressed, the Myasthenia Gravis community should be very familiar with the precautions needed to stay safe from infections. With the COVID-19 virus spreading it is important for patients and their families to be extra vigilant. This includes:

The booklet “MG Xplained” is a wonderful resource that has been uploaded to the MGAQ website.  This resource was not produced by the MGAQ, but we were very lucky that CSL Behring sponsored the production of this very user-friendly, easily understood explanation of Myasthenia Gravis.  We wish to thank CSL for this wonderful support of such a worthwhile project.  The association also acknowledges the work of Dr Stefan Blum, who advised throughout the writing and production to ensure that all the information contained within was accurate and relevant.

Rare Disease Day takes place on the last day of February each year, this year being 29 February, with the main objective to raise awareness among the general public and decision-makers about rare diseases and their impact on people’s lives. Organised by Rare Voices Australia.

The Drugs to be Used With Caution information has been formatted into a wallet card containing members personal details as requested. This item will replace the previous Medi-Alert Card.

The online application can be found at: https://mgaq.org.au/request-for-medi-alert-card

An application form will be included with this newsletter or can be downloaded at anytime from the website: