The author is A/Prof Stephen Reddel (Neurologist NSW). He is a member of the MAA Medical Advisory Board and we sincerely thank him for his guidance at this time.
Over the past couple of months we have discussed five series of new services, podcasts and vodcasts, to be delivered to members. For two of those series, namely ‘My Journey with Myasthenia’ and ‘Ask the Expert’ podcasts, we need help from each and every member.
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.
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.
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