MND Connect brought together the community, researchers and clinicians in an interactive forum to discuss MND research. The presentations can be viewed by following the link below. The 4th annual MND Connect meeting was held in Melbourne on 10 November and showcased the remarkable MND research currently being undertaken in Australia. People living with MND were invited to attend, along with friends, family, researchers and health professionals from the broader MND community. Ron Grima, who is living with MND, attended the conference with his wife, Debbie. Ron provided MND Australia with the following report.
"Having only recently been diagnosed with Motor Neurone Disease, I didn’t know what to expect from the 4th MND Connect conference. From the opening address by David Ali, MND Australia President, to the closing panel discussion, I found the conference interesting, informative and enlightening.
“MND: one disease, many faces” was a theme of the conference, and Maria Nanfra highlighted this when she shared with us her amazing story from ‘a carer’s perspective’. Maria encouraged all carers to ‘take time out for yourself’; a very important message for all devoted carers.
One of the presentations I found interesting was “Breathing Life into MND”, by Professor David Berlowitz. Professor Berlowitz showed evidence of a 20-year research program tracking the effect of non-invasive ventilation (NIV) on survival. The research indicated that NIV improves overall survival by a median of 13 months.
The value of the MND Connect conference was highlighted by the diversity in the research presentations, including:Cognition and behaviour and MNDThe role of stem cells in screening drugs as potential therapiesGenes and the environment: The different causes of MNDClinical trials update.
It was clear that those involved with MND research are all inspired to achieve one goal: to live in a world without MND. A huge thank you to MND Australia and everyone involved in putting this important conference together. A special mention to all the volunteers from MND Victoria; the Florey Institute; MND Australia CEO, Carol Birks; and Shyuan Ngo and Derik Styne from the University of Queensland.
MND Connect provides a unique opportunity for those affected by MND to learn more about MND research and care strategies. If you would like to watch the powerpoint and video presentations from MND Connect 2018, these are available below."
Dr Susan Mathers - Opening Address - MND, One disease with many faces
Maria Nanfra - A Carer's Perspective
Dr Thanuja Dharmadasa - The MND jigsaw: patterns within the puzzle
Associate Professor Gail Robinson - Cognition and behaviour and MND
Roxanne Maule - Managing Bulbar Symptoms and advances in communication technology
Professor David Berlowitz - Breathing life into MND
Associate Professor Ken Rodgers - Genes and the environment: The Different Causes of MND