MYASTHENIA ALLIANCE AUSTRALIA Update April 2020
THE eNID PROJECT
It is with extreme gratitude that the MAA can announce progression of the eNID Project to the testing phase. This means that the coding work has been undertaken for Version 1 and the key Specialists are exploring and fine-tuning the functionality. There is much hope for an April launch. This would then see the programme available for use by participating Specialists. We are very grateful to MSBase for continuing with this project and for providing the required data technology to make it happen. We are grateful to Dr. Katherine Buzzard, A/Professor Stephen Reddel and Dr. Stefan Blum for their keen interest in initiating and developing this opportunity for people affected by Myasthenia Gravis.
The MAA Board wishes to draw attention to the great contribution the MG Community has made in bringing about this outcome. When the initial call went out to raise $40,000 for this project, supporters across Australia reached into their pockets with very few questions asked and endorsed this project. This money was raised by the end of the 2017 Conference. Encouraging support continued to be received from a handful of very generous donors. When MSBase confirmed that work could continue but with a changed financial proposition the MAA were able to respond very quickly and with a 'No Problem’ response! We did not want this project to stall. With assistance from both the MGAQ and the MGNSW Associations, the requested funding was achieved and the cheques were sent in February 2020. The MG Community of Australia has contributed $105,000 towards this invaluable project.
More updates will be provided as information becomes available. With so little research focused on chronic management of this condition, this database will allow clinicians to look for trends in their use of the available treatments and therefore bring enhanced patient care. We hope all Australian neurologists will be keen to participate.
Regards Susan White
Follow the work of the Alliance by registering at the website: www.myastheniaallianceaustralia.com.au