Helping vulnerable infants thrive

An enduring legacy

MCRI is built on a foundation of philanthropy. It was the generosity of donors, many personal friends of our Founders Dame Elisabeth Murdoch and Professor David Danks, that helped establish what was then called the Murdoch Institute for Research in Birth Defects.

Since its inception the Institute has grown from a handful of researchers to become Australia’s most influential and highest rated child health research institute and one of the top three worldwide. The success of MCRI and the impact it has had on the lives of children would not have been possible without the generosity of visionary philanthropists including Sir Jack Brockhoff, the Scobie and Clare Mackinnon Trust and the Miller family. Through the leadership of our Global Ambassadors, Sarah Murdoch and Suzi Carp AO, the commitment of our Global Advisory Board, the Development Board led by Miffany Blythe and the Council of Ambassadors, the spirit of generosity continues to power the growth of MCRI. We are grateful for the passionate commitment of our donors to invest in our brilliant researchers, cutting-edge projects and strategic initiatives which will continue to transform child health for generations. Together, they have driven and accelerated the medical breakthroughs that have and will continue to give children the opportunity to live healthy and fulfilled lives. As we look ahead to the next 35 years, we continue to draw inspiration from Dame Elisabeth’s hands-on approach to philanthropy, as we welcome a new wave of modern philanthropists inspired to make transformational social change through innovative funding approaches focused on delivering impact on a global scale. With children at the heart of everything we do, there is no greater privilege than to work alongside our donors and witness the lasting impact of their support. With sincere appreciation, Matthew Hannan, Head of Philanthropy

The late Dame Elisabeth Murdoch on her 99th birthday, at Cruden Farm.

35 years of philanthropy

Foundation’s tireless efforts shine a light on NF

Established in 2018, the Flicker of Hope Foundation aims to raise awareness of neurofibromatosis (NF). This little-known genetic disorder affects about one in 2,500 people worldwide, with about 10,000 Australians currently living with the condition. Neurofibromatosis type 1 (NF1) is a genetic condition characterised by tumours in parts of the nervous system, such as the brain, spinal cord or nerves that send signals throughout the body. It is caused by a mutation in the NF1 gene, which reduces the neurofibromin protein, a tumour-suppressor. With less tumour-suppressor, certain types of tumours can form, such as in the optic nerves or peripheral nerves, which cause pain, disfigurement and disability. Tumours growing near or around important neural structures like the spinal cord can be difficult to remove safely. As well as tumours, 80 per cent of children with NF1 will have moderate to severe cognitive difficulties. About 40 per cent of affected kids have ADHD, one quarter have autism spectrum disorder and up to half have learning difficulties such as dyslexia. Sadly, there is no cure, and treatment includes surgical tumour removal or chemotherapy. Moreover, treatments for the underlying cognitive problems are limited. Wanting to help shine a light on NF1 sufferers, Zoe Petropoulos and her mother Anne established Flicker of Hope. Zoe, now 21, was diagnosed with NF1 at the age of four months. She has multiple tumours, including in her brain and spine. Zoe also has dyslexia and co-ordination problems, but considers herself lucky as many others with NF struggle with far more severe health conditions and complications. Through their determination, commitment and fundraising events such as Kicking Butt for NF Research, the foundation has raised and donated more than $1.3 million to support research on neurofibromatosis. Thanks to Flicker of Hope’s generosity, two research projects are currently underway here at MCRI. One is looking into trametinib, an anti-cancer drug that has shown promising early results in treating some NF1 tumours and a second research project that aims to understand how NF1 affects brain development and function in relation to autism which occurs in 25-30 per cent of children with NF1. State-of-the-art stem cell modelling methods and high throughput drug screening facilities at MCRI are being used to support this project.

A powerful legacy for children

Joe Axiak will forever be remembered as a hard-working cattle farmer from Dunedoo, NSW, and for making an enormous difference to children’s lives across the country. After a lifetime on the land, when Joe died at the age of 78, he left his entire estate to help sick children. His significant gift is now helping our researchers find new preventions, treatments and cures for many childhood conditions. Joe and his brother Andy spent their lives working on the family property and were well known throughout the district for their farming expertise. They kept to themselves and led a frugal life, only needing each other, trusted friends, and their beloved animals. After Andy died suddenly in 2017, life was never the same for Joe. His health began to deteriorate, and it was during this time he decided to write his Will and include a bequest for MCRI. While Joe did not have a family of his own, he always had empathy for children and wanted to give them the opportunity of a better, healthier and happier life. Joe will never be forgotten at MCRI. His story will continue through our lifechanging research projects and the children who have their whole lives ahead of them thanks to his kindness. We receive all types of bequests from generous, everyday Australians and are grateful for every single one. Please visit mcri.edu.au/bequest to find out how to leave your legacy for the benefit of children. Images from left: Anne (left) and Zoe Petropoulos. Joe Axiak (left) as a young boy; Joe (centre) with his family.

The Danielle Besen Scholar in Mental Health Leadership

As a result of the ongoing pandemic and the related public health measures through 2021, children experienced significant impacts on their mental health, which will continue to be felt over many years to come. By establishing the Danielle Besen Scholar in Mental Health Leadership within the Centre for Community Child Health (CCCH), the Institute is empowered to take action and make a difference. The Scholar position was generously established by Danielle Besen, a mother of three who has been involved in youth philanthropy for more than 23 years. Danielle believes this role will enable the Institute to have a voice in how governments engage school systems and the medical community to improve youth mental health, as well as remove the stigma of mental health in our society. Rachel Whiffen, the inaugural Danielle Besen Scholar in Mental Health Leadership – Mental Health Advocacy Lead, is excited about the opportunity to contribute. “I feel it has never been more important to ensure that all children have a strong foundation for lifelong wellbeing,” she said. “The opportunity to be able to work extensively with leaders in child mental health and development is incredible.” According to Professor Sharon Goldfeld, the pandemic has exacerbated the pressures on young people’s mental wellbeing, with children facing “generation-defining disruption”. “Danielle’s vision and generosity ensures that Rachel and the CCCH will deliver an advocacy agenda focused on equity, prevention and early intervention. We will have the power to inform the changes needed to redress adversity,” she said.

Eden O’Meara almost her leg to Strep A infection. Read about her story on page 16 and our efforts to develop a vaccine against this insidious infection.