Ice Bucket Challenge Pours Over $1.1 Million Into Motor Neurone Disease Research
Spring 2015
The collective goodwill of the people of Australia who doused themselves with icy water in August and September last year has provided the funds for the largest grant ever awarded by the Motor Neurone Disease Research Institute of Australia (MNDRIA). ND researchers from the M Queensland Brain Institute brave the icy water during the Ice Bucket Challenge 2014
According to Professor Wray the biology of MND is complex and poorly understood, but there have been important advances in MND research in recent years. “These advances have been driven, almost entirely, by gene discoveries from the small number of families with more than one affected individual,” she said. However, for the vast majority (90% of all cases) of those with MND the diagnosis is sporadic, meaning they are an isolated case with no family history of the disease. Recent developments in technology have revealed that people with sporadic MND may have genetic changes that could be risk factors for MND.
The search for new risk genes and therapies to treat motor neurone disease (MND) is set to accelerate with the award of the $1.05 million MND Australia Ice Bucket Challenge Grant that will bring together clinicians and researchers from Australia’s leading MND centres to form the Sporadic ALS Australian Systems Genomics Consortium (SALSA-SGC). This is the largest collaborative MND project to be undertaken in Australia. It will be led by Professor Naomi Wray of the University of Queensland’s Queensland Brain Institute (QBI) and Associate Professor Ian Blair of Macquarie University’s MND Research Centre. The consortium comprises sixteen researchers from nine MND centres across Australia as well as international collaborators.
“The initial aims of SALSA-SGC are to ensure all the major MND clinics in Australia are collecting DNA and clinical data from all patients in a consistent way, both at their first visit and longitudinally over time,” said Professor Wray. “This means that those affected by MND today will provide a long-term gift to research as the biobanked samples can be used for both current and future genetic studies.” Once DNA and clinical data is collected, SALSA-SGC aims to collectively identify new risk genes through whole genome analysis. The researchers will also contribute to the largest international collaborative genetic study of sporadic MND ever conducted, called Project MinE. Project MinE aims to understand the genetic basis of MND by analysing the DNA profiles from at least 15,000 people living with MND and 7,500 control subjects across the world. An additional $100,000 of Ice Bucket Challenge donations was
last year awarded to Associate Professor Ian Blair as start-up funding for Australia’s participation in Project MinE. “The technology for undertaking genetic studies has been a limiting factor which is why sporadic MND has been little studied, but now continuing advances in technology means that the availability of biobanked samples linked to detailed clinical records is a limiting factor. The Ice Bucket Challenge Grant has provided an opportunity to generate a research resource to fill this gap and benefit MND research for many years,” said Professor Wray. MNDRIA aims to improve the future of people with MND by promoting and funding research to understand the causes, find effective treatments and discover cures for MND. MNDRIA is the research arm of MND Australia and a major driving force behind MND research in Australia: www.mndresearch.asn.au
“Every August Until A Cure”: 2015 ALS / MND Ice Bucket Challenge The Ice Bucket Challenge was initiated by two people living with ALS/MND in the US, Pete Frates and Pat Quinn. When receiving an award recently Pat Quinn announced in his five-word limit acceptance speech “Every August Until A Cure”. Pat and Pete will recreate the start of the Ice Bucket Challenge on 31 July 2015 and will be highlighting the need to continue the flow of funds for care and research until we have a cure. Get your buckets ready!
Research Australia grassROOTS SPRING 2015
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