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Equity Trustees today announced a record $1 million grant from the philanthropic trust, The Mason Foundation, which will go towards project funding for a landmark five-year project which aims to help medical researchers find solutions to Chronic Fatigue Syndrome (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome or ME/CFS), a debilitating and little understood condition.

The innovative project funding brings together researchers from La Trobe University, Emerge Australia and Australian Red Cross Blood Service (Red Cross) and many other institutions to establish the first Australian Registry and Biobank for ME/CFS, and link research teams from several national institutions as well as consortia based in Europe, the United Kingdom and North America – all working towards identifying causes and potential treatments for the disease. The Biobank will provide access to blood samples and DNA for researchers.

Professor Peter Schofield AO, Chair of the Mason Foundation’s National Medical Advisory Panel, explained: “The development of a new Australian collaborative resource to better tackle ME/CFS has been a priority for the Mason Foundation. The Panel selected this team from a strong pool of applicants based on their plans to establish this national registry and biobank to undertake and facilitate a range of new research projects. The registry and biobank will contribute new insights into the causes and potential treatments of ME/CFS which will help people who live with this condition globally.”

“As we are still in the process of trying to work out the markers for diagnosis, as well as potential causes and ultimately treatments, the scale of work needed is enormous. In each of our countries the sample groups are small. But together we can share the work – and share the data. Eventually we will also share what we hope will be ways forward to address this condition,” Head of Microbiology at La Trobe University and project leader, Professor Fisher said.

 “Very little public funding has gone into this disease over the past decades,” said Jodi Kennedy, General Manager, Charitable Trusts and Philanthropy, Equity Trustees. “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.”

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.

More about this project and its aims can be found here.

Equity Trustees manages more than 600 charitable trusts and foundations which distributed more than $80 million in FY18. 36% of this funding went to the medical research and health sector. More about Equity Trustees and impact philanthropy can be found here:

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Alicia Kokocinski

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Equity Trustees was established in 1888 for the purpose of providing independent and impartial Trustee and Executor services to help families throughout Australia protect their wealth. As Australia’s leading specialist trustee company, we offer a diverse range of services to individuals, families and corporate clients including asset management, estate planning, philanthropic services and Responsible Entity (RE) services for external Fund Managers. Philanthropy services are provided by Equity Trustees Limited (ABN 46 004 031 298, AFSL 240975) and Equity Trustee Wealth Services Limited (ABN 33 006 132 332, AFSL 234528), both companies are part of EQT Holdings Limited (ABN 22 607 797 615), a public company listed on the Australian Securities Exchange (ASX: EQT)