The MND Australia Research Meeting 2015 was held at the University of Sydney on the 22 - 23 November.
Over 150 people from the wider MND community attended the meeting, which included 21 platform presenters and 44 poster presenters. Click here
or the button below to see the full program from the research meeting:
MNDRIA announced a record $3.32 million of funding for MND research next year, with an addition $1.75 million being generously contributed by the Cure For MND Foundation, bringing the total to $5.07 million dollars.
See below for a full review
of the research meeting by Dr Bradley Turner, read Dr Paul Brock's address to attending researchers
, or more information on the Betty Laidlaw MND Research Grant
Review of MND Australia Research Meeting 2015
Dr Bradley Turner, Florey Institute of Neuroscience & Mental Health
A record number of researchers gathered at the University of Sydney on the 22nd-23rd November to showcase, absorb and debate the latest findings from MNDRIA-funded projects in 2015. Given the ever expanding program and researchers attracted to this field, this year's meeting spanned two-daysof intense poster and oral presentations for the first time. Riding on the success of the Ice Bucket Challenge last year and Big Freeze at the G earlier this year, there was much enthusiasm and a collaborative spirit in the delegates as we march on to a cure for MND. A highlight of the scientific program is provided below.
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Prof Bruce Robinson (University of Sydney) opened the meeting, highlighting the sobering realities of medical research in a climate of diminishing federal government dollar investment and plummeting grant funding rates. Unfortunately, this means very worthy MND research projects whilst competitive against other national health areas, are not funded due to limited government budgets. David Ali, President of MND Australia, followed with welcoming news.
A record $5.07M in research grants had been awarded by MNDRIA to the keenest and brilliant MND research teams across the nation. This resulted from the combined efforts of MNDRIA and the Cure for MND Foundation. This was much needed encouraging news and helped set an exciting tone for the rest of the meeting.
Prof Naomi Wray (University of Queensland) who is spearheading the Sporadic ALS Australian Systems Genomics Consortium launched the science with a vision for the Ice Bucket Challenge Grant awarded to her team earlier this year. This will directly contribute to Project MINE, a worldwide initiative to crack the genetics of sporadic MND, and the establishment of an Australian biobank for MND samples. A/Prof Ian Blair and Dr Kelly Williams (Macquarie University) continued the genetics theme, outlining results from next-generation approaches to solve heritable and non- heritable changes in genes that could contribute to MND.
In true Apple fashion, Prof Lars Ittner (NeuroResearch Australia) introduced his new MND mouse called iTDP-43 in which the defective gene could be "turned off", leading to a striking reversal of symptoms and brain pathology. This suggests that eliminating TDP-43 protein, even in advanced MND patients, could provide long-term benefits and halt progression.
Dr Brad Turner (Florey Institute) presented new evidence implicating a role of androgen (testosterone) receptor malfunction in MND which could explain the male bias occurring in MND. Dr Justin Yerbury (University of Wollongong) outlined his ongoing quest to develop an imaging tool to track MND pathology in the brain based on ubiquitin chains. This approach has been successfully used by other researchers in Alzheimer's disease and holds great promise for MND. A/Prof Peter Noakes (University of Queensland) and Dr Jacqueline Leung (Wicking Centre) provided new insights into the role of muscle and support cells, called oligodendrocytes which insulate motor neurons, respectively, in MND, suggesting that multi-targeting these cells may be key to effective treatment of MND.
In a special announcement, Australian philanthropist John Laidlaw announced a $1M donation to MNDRIA to support research. John delivered a heartfelt tribute to his wife Betty Laidlaw who is battling MND and pledged another donation of $1M next year. Everyone was touched by John's bravery and generosity and we welcome his support in the fight against MND.
Dr Rachel Tan (Neuroscience Research Australia) presented fascinating findings that the so-called toxic protein products of C9ORF72 - the most common genetic cause of MND - may actually associate with survival of neurons, rather than death. This suggests we may need to re-evaluate the role, if any, of C9ORF72 protein products in MND. Dr Parvathi Menon (Westmead Hospital) provided an update on anatomical spread of MND in patients, favouring a "dying-forward" model of spread from the brain to the spinal cord based on electrodiagnostic evidence. This was supported by A/Prof Tracey Dickson (Menzies Institute) who showed defects in small nerve cells called "interneurons" in the brain which control electrical stimulation of motor neurons. Collectively, these results pinpoint abnormalities in electrical activity of motor neurons in the brain in the origins of ALS, suggesting a re-targeting of potential therapies. Dr Catherine Blizzard (Menzies Institute) presented her meticulous studies showing striking images of spine regression (tiny structures protruding from motor neurons that connect to other nerve cells) in MND mice long before symptoms start, suggesting spines are early targets for both disease and potential treatment in MND.
In a session dedicated to potential treatment approaches, A/ Prof Trent Woodruff (University of Queensland) showed evidence that blocking the "inflammasome" and complement systems, both activated by the immune system, can benefit MND mice. Excitingly, novel orally active versions of these drugs are available and could be adapted to clinical trials. In a double act, Prof Steve Vucic and Dr Fiona McKay (Millennium Institute) presented results from an ongoing clinical trial using narrow band UVB phototherapy to stimulate the immune system in MND, specifically Treg cells which protect motor neurons. This trial is safe and straightforward to implement, and positive outcomes are highly anticipated. Lastly, Dr Shuyan Ngo (University of Queensland) provided an update on metabolism in MND, showing a preference for fat metabolism over glucose in brain and muscle which could contribute to a vicious cycle of damage to motor neurons. Interestingly, switching fat to glucose metabolism using a drug in MND mice improved outcome, suggesting that altering metabolism using dietary interventions could be a useful and simple strategy in MND.
Overall, this was a meeting that exceeded expectations on all levels: record attendance, record research grant funding, world class research findings and a surprise donation to further accelerate the quest to cure MND.
Dr Paul Brock AM address to researchers
In the three minutes allotted to me by my dear friend Janet Nash, I wish to undertake the near-impossible task of reflecting over the development in MND research during the nearly 20 years of my having lived with this rotten disease.
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After being diagnosed with MND in 1996, I sought to find out about NSW researchers in the MND field. To my delight, two of those I look upon as ‘godfathers’ of MND research – Emeritus Professor Garth Nicholson and Associate Professor Roger Pamphlett – are with us here today. I also heard about Professor Perry Bartlett – who soon afterwards left Victoria for the maroon pastures of QBI. I soon became aware of the not-yet-then-Professor Matthew Kiernan – through his gently worded, kindly ‘bedside manner’ of ‘torturer’, as he was the person who administered the very painful, invasive electrically-shocked insertion of needles to assess my nerve / muscle responses. Now, my fear of pain has been transformed into the warmth of friendship. I was delighted when Matthew told me today that a three-year Fellowship he had been awarded about five years ago had led to great success in his invention of a significantly improved diagnostic tool. The other not-yet-then-Professor, Dominic Rowe AM, was to become my neurologist, the manager of my clinical treatment, and my great friend.
Having been asked by Janet to stand for a position on the MND NSW Board – and having duly agreed-– I was quite shocked to find that within the three stated goals of our Association, the word “research” did not appear. So I set about writing another goal: to support research to seek the cause(s) of, ways of ameliorating and slowing, and eventually finding a cure for, MND – and to weave this goal into appropriate parts of the MND NSW Constitution. My Board colleagues enthusiastically agreed.
Over the years there has been, at first a steady, then an accelerated, and now a truly dramatic increase in the funds available and distributed for MND research by MNDRIA. Our congratulations and gratitude must go to Dominic Rowe for his chairing of the MNDRIA grants awards for the first decade, and Matthew Kiernan for the most recent two years. And heartiest thanks and congratulations to Janet and Carol Birks, in our MND Australia National Office, for all of the expertise and effort they have put into our research and other achievements at the national level. Nationally we have benefited from the remarkable success of the MND Ice Bucket Challenge. Then today we have had the fabulous $1million announcement by John Laidlaw – and his promise of a further $1million next October.
Many wonderful people contribute to the increasing funds available for research but I make special mention of the Bill Gole Post-Doctoral Fellowships (I believe there are nine such Fellows with us today)sponsored by the ongoing tremendous donation by an anonymous donor.
Over the nearly 20 years I have attended MND research conferences at State, National and International levels. On every occasion I have come away disappointed. However, I will leave today very happy. So thanks – not only to all the presenters – but to Janet and Matthew who, I understand, put it all together.
In conclusion, I wish to say two things. First of all, to all of you young researchers ‘up the back’, thank you so much for becoming involved in MND research. I know how very difficult it has become to get a fulltime job in science – you can’t live on post-doctoral positions forever. We are all aware of a developing brain drain to countries where suitable scientific employment is welcomed. Good luck for an enriching career in science – hopefully, in the MND and / or associated field(s).
Second, could I urge all of you – especially, but not only, the more experienced of you – to resist any pressures to return to the separated ‘silos’ model of researchers (looking ‘down’ upon clinicians) and clinicians (looking to researchers as dwelling in ‘ivory towers’). All of you must remember, that although getting published in distinguished journals like Neurology or even less-distinguished, but still refereed, journals – and climbing up the ladder of progression / promotion whether it be in either silo – the fundamental final goal for each one of you must be within the therapeutic field along the lines (at least as far as MND is concerned) I outlined in my additional goal for MND NSW.
There has to be a symbiotic / interrelated / interdependent set of relationships between research and clinical practice. I am reminded of what the late, great, Christopher Reeve told me he used to say loudly to researchers, politicians, philanthropists and others with the power to effect cures for still-incurable conditions and diseases: “Our houses are already on fire, and we need you to put them out NOW”.
BetTy Laidlaw mnd research grant
The MND Australia Research Meeting 2015 was full of surprises, including the announcement that John and Betty Laidlaw have donated an incredible $1 million to MNDRIA. This generous donation will be used to fund a three-year project, allowing researchers to make inroads into understanding MND and move towards finding an effective treatment. This was followed by a second announcement of another $1million dollars next year. Thank you John and Betty!
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John Laidlaw’s father David starting making workwear in the garage of his parents’ home in Melbourne in 1922. By the 1930s Hard Yakka had been established—an iconic name synonymous with workwear in Australia. John eventually took over the business from his father and expanded and consolidated the company which he sold in 2007.
John and his wife Betty have a long history of philanthropy, supporting many projects for homeless and disadvantaged people. This tradition is being continued by their family.
Betty has been living with primary lateral sclerosis, a slowly progressive form of motor neurone disease, for over 30 years. Betty can no longer walk, use her arms or speak and sometimes she doesn’t recognise her husband. John is devoted to her and Betty lives at home with 24/7 care. While John has been giving what he refers to as small contributions to MND Victoria over this period, it was not until this year and the MND diagnosis of former AFL player Neale Daniher with associated media attention, that John realised he too could make a significant difference for MND research.
Betty and John’s gift of $1 million to MNDRIA will fund a special grant to be awarded before June 2016. John requested that the MNDRIA Research Committee should determine the best use of this magnificent gift.
The Betty Laidlaw MND Research Grant will fund a 3-year project grant with researchers from multiple institutions working collaboratively towards finding an effective treatment for MND. This provides real hope for a better future for MND.