Motor Neurone Disease Australia is proud to announce the launch of a prestigious grant to support an outstanding leader in MND-specific research. 

The MND Australia Leadership Grant will provide $150,000 per year over four years, commencing in January 2013. It will enable a leading researcher to build a team that will seek to understand the causes, provide better care, control the symptoms or find a cure for MND.

It is not such a long time since few people knew about MND but, as awareness has grown, so too has the quality and scope of research, which is the only way to change the future of this devastating disease. 

How will the MND Australia Leadership Grant work?

Three leading MND researchers will be nominated by the national MND Research Committee members and invited to apply for the MND Australia Leadership Grant. Applications will be reviewed by independent overseas experts and the final decision will be made by the MND Research Committee at the grants allocation meeting in November 2012. 

Where will the funds come from?

Sponsorship to support the MND Australia Leadership Grant will be sought from corporations and foundations. The grant will expand and enhance MND Australia’s existing research grants program, with grant funds to be over and above those received from general donations and MND Associations.  

MND research in Australia

The Motor Neurone Disease Research Institute of Australia(MNDRIA), the research arm of MND Australia, allocates funds for MND research inAustralia. All funds available for distribution come from donations and bequests to the Institute and to MND Associations. The national MND Research Committee reviews all proposals and recommends the grant awards. MNDRIA currently provides:

• PhD Scholarships to encourage young scientists and clinicians to start their career in MND research 
• Post doctoral fellowships to early career researchers, enabling them to become established in MND research 
• Grants-in-aid for small projects that pave the way for scientists to approach government      sources for larger project funding using data gathered from start-up projects

Supporting today’s leaders

The MND Australia Leadership Grant will be awarded to an outstanding researcher who has demonstrated his or her passion and tenacity for MND research. The grant provides a unique opportunity for MND Australia to support long term projects that are specifically focused on MND, to retain our brightest researchers and ultimately, to drive MND research into the future.

Catherine says: "I have enjoyed reading Dr Justin Yerbury’s updates over the last few years and reflecting upon this, with his ability to succinctly break down scientific jargon into something that everyone can understand, I realise I have rather large shoes to fill!

So who am I? I am one of the 2011 Bill Gole Postdoctoral Research Fellows supported by MNDRIA, based at the Menzies Research Institute of Tasmania. Their support has enabled me to investigate why neurones stop functioning in MND, and the role over excitation of neurones plays in neuronal dysfunction. Research into MND is constantly evolving and investigators are steadily working towards uncovering aspects of the disease that may be therapeutically targeted to reduce the devastating consequences. Through the MND Australia Research Updates I will endeavour to keep you up to date with newly emerging studies in this complex field of research".

This edition focuses on mitochondria - read more

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Fifteen projects across the country have been awarded grants to commence in 2012.  They span areas such as genetics, mouse models, protein aggregation, monitoring disease progression and cognition and behaviour. All the research funds come from donations to MND associations.

A further $2,665,500 has been provided by NHMRC to new MND projects commencing in 2012, which, with the $1.357 million provided by MND Australia, makes a grand total of $4,022,500 for all new grants for MND projects commencing inAustraliain 2012.

About the MND Australia research grants: MND Australia research grants are allocated in a hotly contested national competition each year at the MND Research Institute's Committee Grants Allocation Meeting.  This year 15 applicants from NSW,Victoria,Queensland andSouth Australia were successful.  

The recipients of the 2012 MND Australia research grants are:

One three-year Postdoctoral Fellowship for 2012 to 2104 awarded to:

Twelve grants in aid awarded to:

One three-year MNDRIA/NHMRC PhD scholarship for 2012 to 2104 awarded to:

A three-year PhD Top-up grant for 2012-2014 will be announced soon.

'Over the last three years I have had the pleasure of writing this report with the aim of creating a report that could translate the most recent MND research filled with scientific jargon into something that we can all understand. It has been a very exciting three years and we have covered some great leaps in scientific progress in the understanding of MND. When I first started writing this report it was common to see the phrase “we do not know what causes most familial cases of MND”. Since then mutations in the genes TDP-43, ELP3, FUS/TLS, ANG, OPTN, ATXN-2, VCP and UBQLN-2 have all been found to cause MND. Most recently two groups of scientists have reported that a new gene, C9ORF72, causes many cases of MND and FTD. This new gene has become the most common known cause of MND. We have also seen progress in understanding the biology of MND with uncovering of pathways in inflammatory processes, stress pathways, protein disposal and much more. In this, my last report before passing on the job, we will focus on this new genetic mutation and what this means for understanding MND, and as always we will look at some of the other MND research going on all around the world.'

Full report available here

MND Australia thanks Justin for his time and commitment in preparing the quarterly newsletter for people living with MND over the last three years. We also thank MND Victoria for their financial contribution to this vital national information resource.

Analysis of the data commenced in the second half of 2011 with the intention of creating a publication looking at factors that positively improve survival, clinical phenotypes and health service requirements. Funding has also been obtained for a formal audit of the AMNDR data which will be conducted in 2011. The collection of data relies heavily on the goodwill of a number of clinical research nurses and their consultant neurologists. This information will be a valuable resource for researchers into the future.

In 2011 two new research collaborations using the AMNDR data have been initiated, one is looking at clinical phenotypes and cerebrospinal fluid, whilst the other is looking at the effect of non-invasive ventilation in MND.

The AMNDR Steering committee has been able to secure funding to run the database for at least another 5 years. It remains one of only a few active MND registries world-wide and this is a testament to people with MND and their carers, along with the dedicated staff aroundAustraliathat keep the registry running.

More information on AMNDR - click here

A total of $673.3 Million was awarded - theBiggest Ever Investment in Health and Medical Research

Two independent studies, both funded by The ALS Association, have found a genetic abnormality that, according to researchers, is the most common cause of Amyotrophic lateral sclerosis (ALS) and frontotemporal dementia (FTD)....

See report from ALS Association http://www.alsa.org/news/archive/9p21-abnormality.html

Chromosome 9 finally reveals its secrets

September 21, 2011 — Kate Arkell

It’s taken a huge international collaboration, including 3 MND Association-funded scientists, to discover a genetic mistake that appears to cause almost 40% of cases of familial (inherited) MND – that’s nearly twice as many as are caused by mutations in the SOD1 gene and more than three times as many as are caused by TDP-43 and FUS combined. Yet despite the fact that it’s relatively common, the rogue gene proved especially difficult to find....

 See full report from MND Association http://mndresearch.wordpress.com/2011/09/21/c9orf72/

MND was first described over 140 years ago. Science and technology have come a long way since then. At that time not everyone accepted the idea that bacteria could cause disease, and since scientists had only just discovered MND they were a long way from finding clues as to what caused it. Sadly, at first glance it seems that even with today’s technology we are not much closer than we were 140 years ago to effectively treating patients with MND. In truth it took around 120 years to find the first known cause of MND (mutations in the SOD1 gene). However, as technology continues to develop, so too does the speed at which research such as gene sequencing (reading the DNA code for each gene) can be conducted. Now we know of more than a dozen genes that, if mutated, can cause MND, and no doubt more will be discovered in the coming years or even months. What this means is that we can start putting together what we know about the functions of the MND genes and start building a picture of what truly causes MND. Imagine being given one jigsaw puzzle piece and being asked to identify the picture – the picture could be of many things. However, as we are given more pieces we are more likely to see what the bigger picture is. In this report we will look at some newly discovered MND genes and what this means for understanding MND, and as always we will look at some of the other MND research going on all around the world. Read more ....

Led by eminent researcher Prof Teepu Siddique this research group describes unique mistakes in a gene called UBQLN2, which codes for a protein called ubiquilin 2, in five families with the inherited form of ALS. This research group also found that this protein is found in both the inherited and sporadic form of MND, which suggest that this finding could be key to finding a new treatment for the disease. Their findings were published in the prestigious Journal Nature.

An overview of the research from the UK MND Research blog available here 

The abstract of the paper published in Nature click here

Response to press releases and overview from ALS Canada available here

Chicago Tribune Story

Check out the video on Fox Chicago News