“The Australia and New Zealand MND Research symposium gave me hope” 

In August, Dr Natalie Gauld, MND NZ’s Research Advisor travelled to Melbourne to attend the Australia and New Zealand MND Research Symposium.  

Here, she shares her insights and highlights from the conference.  

The Australia and New Zealand MND Research Symposium was a two-day jam-packed series of presentations by clever people working hard to find the pieces of the puzzle that is MND and keen to share their ideas and learn from each other.  

This symposium had international thought leaders in MND from the UK, US, Canada, Malaysia and Australia.

These included Professor Kevin Talbot, Professor of Motor Neuron Biology, Oxford, UK, Dame Pamela Shaw, Director of Sheffield Institute for Translational Neuroscience, UK, Professor Ammar Al-Chalabi, Professor of Neurology and Complex Disease Genetics and Director of King’s Motor Neuron Disease Care and Research Centre, King’s College, London, Professor Jeffrey Rothstein, Professor of Neurology and Neuroscience; Director, Brain Science Institute, John Hopkins School of Medicine, Baltimore, USA, Professor Matthew Kiernan, Bushell Chair of Neurology at Royal Prince Alfred Hospital and the University of Sydney and Chief Executive Officer and Institute Director for Neuroscience Research Australia, and Dr Angela Genge, Director Montreal Neurological Institute, Canada. The number of experts was unprecedented as they were in Melbourne for a global roundtable on MND to follow the symposium.    

Over 50 presentations showed a huge range of work being done trying to solve the challenges of this disease, focusing particularly on understanding the disease and possible treatments.

Much of the work was pre-clinical – science before trials in humans. However, this symposium also brought in MND experts from around the world who spoke about causes, current treatments and likely areas for treatments ahead, including targeting genes. Presentation of the genetics study results from New Zealand by Dr Emma Scotter showed the considerable complexity of the genetic space and the advances being made.  

The most sobering part of the conference for me was the panel discussion which included a question about when we might see a cure. While a cure is expected to be decades away, more effective treatments feel a lot closer. Tofersen for SOD-1 gene mutation is a big step forward. There is an expectation that there could be a cocktail of treatments working on different pathways. One study in motor neurone cells derived from people with ALS showed three different compounds (including riluzole) having some benefit. Excitingly, when two of these three compounds were used together, the benefit was greater. When all three were used together the benefit was greater still.

Such pre-clinical work will lead to clinical trials in humans, and we hope to see more of these show advances.  

I was also excited to see a presentation on exercise research – currently, there is no specific exercise guidelines for MND in Australia, and little research on exercise in MND. This study showed benefit of exercises in people with MND at a range of different progression points. 

This symposium also provided a very useful opportunity to connect with people about getting more patient studies to New Zealand. This was positive and we continue to work in this space to bring more trials to New Zealand, following the successful recruitment into Lighthouse II trial which MND NZ helped fund here.   

MND is a complex disease with genetic complexities, many unknowns about environmental factors and multiple pathways that need to be tackled to treat it. And while the cure is decades aways, the symposium gave me hope.  

Watch the webinar

If you couldn’t make it to the MND Research Symposium, MND Australia is hosting ‘Insights from our MND Research Symposium” where attendees share their insights, learnings and highlights from the conference.

When: Tuesday 15 October @ 9pm (New Zealand time)

Where: Register for Zoom: https://bit.ly/4gNUyfe or watch the live stream on the MND Australia Facebook page.