An extraordinary $5.37 million donation has been made to Lung Foundation Australia’s Hope Research Fund providing a much-needed boost for pulmonary fibrosis research.
The generous gift from an Australian family who would like to remain anonymous coincides with Rare Diseases Day, Tuesday 28 February, which is an opportunity to draw attention to pulmonary fibrosis, a group of rare, incurable lung diseases.
The average survival of people with the most prevalent and devastating form of pulmonary fibrosis is just two to five years from diagnosis, a prognosis as poor as some of the most devastating cancers.
Lung Foundation Australia’s Hope Research Fund will provide the nation’s single-biggest philanthropic investment in dedicated pulmonary fibrosis research to the Centre for Research Excellence in Pulmonary Fibrosis (CRE-PF).
The CRE-PF which is also funded by the National Health and Medical Research Council (NHMRC) conducts a nationally coordinated, clinically focused research program to address the urgent need for more effective, personalised approaches to identify and better manage pulmonary fibrosis.
Lung Foundation Australia CEO, Mark Brooke said the donation, the largest in Lung Foundation Australia’s history, is transformative and will support ground-breaking and world-leading discoveries tackling the debilitating disease that impacts thousands of Australians each year.
“Lung disease is the second highest health burden in Australia and has a major impact on both the healthcare system and quality of life for patients and carers. Despite this, it’s well underfunded with significant gaps in treatment and care. Our partnership with the CRE is the largest lung health research project ever undertaken by Lung Foundation in Australia” Mr Brooke explained.
“Thanks to the support of a generous donor family who lost their father to the crippling disease, we have an opportunity to work with CRE-PF to attract and support world renowned researchers and make significant inroads that will change lives and give hope to Australian families,” he said.
CRE-PF Chief Investigator from the University of Sydney and leading respiratory physician at Royal Prince Alfred Hospital, Professor Tamera Corte said their national team is working together to transform and extend the lives of people with pulmonary fibrosis.
“This funding allows us to undertake a comprehensive and cutting-edge research, education and capacity-building program that directly addresses patient-identified priorities and delivers best practice care to people with pulmonary fibrosis across Australia.
“This is a really exciting time for pulmonary fibrosis research. In the five years the CRE has been operating, we’ve made notable inroads through our research. Just a few years ago, we had no treatment at all for pulmonary fibrosis, and now we are seeing so many changes as we move towards a completely new treatment paradigm,” Prof. Corte explained.
“With the support of generous donors like this, and the support of the community, we’re able to continue this research that will ultimately change and save lives,” she added.
Minister for Health and Aged Care, Mark Butler said philanthropy played a valuable part in pushing forward our understanding and treatment of many rare diseases.
“This family’s generosity will be a lasting legacy, as the leading minds at the Centre for Research Excellence in Pulmonary Fibrosis continue to make inroads into the prevention, diagnosis and treatment of a devastating disease.
“Rare Diseases Day is an opportunity to raise awareness of rare diseases and recognise the ongoing health and psychosocial challenges that thousands of Australians with rare conditions face,” The Hon. Mark Butler MP added.
On the receiving end of research developments is Trevor who has idiopathic pulmonary fibrosis (IPF).
Trevor was diagnosed in 2013, when “my prospects were bleak. I was told it was chronic, progressive and there was no approved treatment available. This disease would kill me…” Trevor said.
However, in 2014, Trevor started a new drug which showed promising results in slowing the progress of the disease. “I am alive today, and I’ve had years of a good quality life with my family and crossed quite a few items off my bucket list because some other people participated in clinical trials conducted by dedicated researchers. I literally owe those people my life. I have been part of a couple of trials, and I am a member of the CRE-PF’s Consumer Advisory Group, where we get to see and contribute to the evaluation of new research and clinical trials.
“It has been very exciting and encouraging to see the incredible range of research being conducted in Australia and the hope is to find better treatments and ultimately a cure for these devastating illnesses… hopefully one day soon, we will hear of breakthroughs that allow people with lung disease to live longer and better lives,” he added.
Marcia who has pulmonary fibrosis has also been involved in clinical trials for medications aimed at slowing the progress of the disease. She said the ongoing support and tracking of her condition through the trials have helped her with both knowledge of the disease and “coming to terms with how it has impacted my health.
“Days like Rare Diseases Day will help to make more people aware of pulmonary fibrosis. Such a remarkable amount directed towards pulmonary fibrosis will have a lasting impact on the commitment to, and success of research into it.
“Without this ongoing commitment to improving the quality of life and outcomes for pulmonary fibrosis sufferers, we would be left to quietly lose our battle against a disease that is both insidious and relentless,” Marcia said.
The Hon. Mark Butler MP said to date, the Commonwealth has invested more than $450 million into rare disease research through the Medical Research Future Fund and the National Health and Medical Research Council.
“The Albanese Government is committed to health and medical research and its translation into practice to improve the lives of Australians.”
To find out more about Pulmonary Fibrosis, please visit https://lungfoundation.com.au/research/our-research/idiopathic-pulmonary-fibrosis-ipf/
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