Philanthropic trust, The Mason Foundation, granted a record $1 million to La Trobe University, collaborators in Australia, the UK and North America and Emerge Australia to establish and conduct research using the first Australian Registry and Biobank for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) - a debilitating and little understood condition. The condition affects up to 250,000 people in Australia, 25 per cent of whom are affected so severely that they are housebound or bedbound.
Making use of existing Australian Red Cross Blood Service (Red Cross) resources and infrastructure, the Biobank will provide access to blood samples and DNA for researchers across the globe who are working towards locating causes and potential treatments for the disease.
Head of Microbiology at La Trobe University, Professor Paul Fisher, whose team are investigating an identified defect in the mitochondria of ME/CFS patients, welcomed the funding towards establishing the Biobank and furthering the research his team and others across the world have been conducting.
“Here at La Trobe we have discovered a specific defect in the mitochondria – the ‘powerhouse’- of the cells of ME/CFS patients and are working towards a simple diagnostic blood test,” Professor Fisher said.
“Our research is part of a global research effort to better understand the disease process, to develop diagnostic tools and to discover effective treatments.
“In many studies of ME/CFS, the sample groups are small. But by creating the Biobank and bringing the various research teams together we can share the work – and share the data.
“Eventually we will also discover what we hope will be new ways to address this debilitating condition.”
Dr Heidi Nicholl, CEO of Emerge Australia – the national patient organisation representing people living with ME/CFS – thanked the Mason Foundation for their generous support and said the funding would ultimately help to improve the lives of patients with the condition.
“While there have been some recent advances in the biomedical understanding of ME/CFS, much more research needs to be undertaken to find effective diagnostics and treatments for a condition which is still widely misunderstood by the general community and by clinical professionals,” Dr Nicholl said.
“This much needed funding for the Biobank and further research will help people whose lives are profoundly impacted by the condition.”
Professor Peter Schofield AO, Chair of the Mason Foundation’s National Medical Advisory Panel, explained: “The development of a single, global registry which links together the data from many Biobanks enables all researchers in this area to access a huge sample of data and specimens from people who live with this condition globally, and to run tests and checks against a control data set of people who don’t.
“Very little public funding has gone into this disease over the past decades,” said Jodi Kennedy, General Manager, Charitable Trusts and Philanthropy, Equity Trustees, which manages the Mason Foundation.
“It affects up to 1 per cent of the population, and for many it is debilitating and confusing, with 25 per cent of those affected left housebound. This is the space where philanthropic funding can have a real and sustainable – and potentially life changing – impact on the people affected and the community.”
Chief Investigators on the project are Dr Heidi Nicholl, CEO, Emerge Australia and Professor Paul Fisher, La Trobe University. Coinvestigators are from Bio21/University of Melbourne; BC Women’s Hospital in Canada; London School of Hygiene and Tropical Medicine; Macquarie University; Open Medicine Foundation; ANU; Murdoch Children’s Research Institute and Victorian Paediatric Rehabilitation Service and Solve ME/CFS Initiative.
About The Mason Foundation
The Mason Foundation was established as a result of a generous donation in 2003 from Judith Jane Mason, who was motivated by her own experience with ME/CFS and also to honour “a most intelligent, wonderful and charitable man” - her adored father, Harold. Judith died in 2013 leaving behind the Foundation and its purpose to support research into ME/CFS and Alzheimer’s disease.
Over the past decade, the Foundation has distributed over $10 Million for research grants and fellowships and is the leading funder of ME/CFS research in Australia, distributing around $1 million each year.
Equity Trustees media release here.
About Emerge Australia
Emerge Australia is a not-for-profit which acts as the national voice for all people living with ME/CFS. Their work gives hope and help to more than 250,000 Australians living with ME/CFS.
Emerge Australia provides education, support and community advocacy to meet the specific needs of people living with ME/CFS in Australia.
Watch the award winning documentary Unrest which tells the story of Jennifer Brea - who is about to marry the love of her life when she’s struck down by a fever that leaves her bedridden. When doctors tell her “it’s all in her head,” she turns her camera on herself and her community as she looks for answers and fights for a cure.
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