The MAA continue to pursue the opportunity for more equitable access by the Myasthenia community to the treatment option, Rituximab/MabThera.
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.
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:
Susan White, MAA President, is delighted to be attending the Parliamentary Event to be held in Canberra, on Wednesday, February 26th in celebration of Rare Diseases Day. Dr Mike Freelander MP, Mr Trent Zimmerman MP and Rare Voices Australia will host the day. Health Minister, Greg Hunt, is to launch the National Strategic Action Plan for Rare Diseases. It will be a significant day.
THE WINNER OF THE KITCHEN BUNDLE OF ENJO PRODUCTS IS... JODY
Please make a donation so that we can continue to provide support for Myasthenia Gravis in Queensland.Make a Donation
Like Us on Facebook and spread the word to raise awareness of MG.
Join our MG discussion forum on Facebook.
Join our MG Carer's discussion forum on Facebook.
Visit the LAMBERT EATON (LEMonS) group on Facebook
Join our Parents/Grandparents group on Facebook.
Closed slack community open to MG sufferers aged 18-35 only