A huge $1.2 million investment kicks off FightMND’s inaugural ‘Care Research Grants’

In another innovative move to ‘beat the Beast’, FightMND will invest $1.2 million into five Motor Neurone Disease (MND) research projects focused on determining and improving best-practice care for people living with MND. 

It’s the next step in the fight for the organisation, and the Care Research Grants initiative will help inform guidelines around providing the most suitable care for people living with MND, as well as MND Care innovations aiming to improve quality of life and extend survival. 

Co-founded by AFL legend Neale Daniher AO in 2014, FightMND is now one of the world’s largest independent funders of MND research.

FightMND’s vision is a world without MND, but the road to a cure also requires a continued effort to improve MND Care in Australia and addressing key challenges faced by people living with MND, and their loved ones, during and after a diagnosis. 

FightMND Director of Research and Programs, Dr Bec Sheean says this commitment to pioneering investment in MND Care research will build the capacity and capability of the Australian Care research sector and serve as a beacon of hope for Australians living with MND. 

Everyone’s journey with MND is different and we want to ensure that every Australian living with MND gets the best support available when they need it most,” says Dr Sheean. 

With this investment, we’re matching our long-term commitment to finding a cure with a targeted focus on improving care through our support of these new projects from incredible teams of researchers. 

“We know that research is the best way to defeat the Beast, but it can also help to tame it. Improving the standards of care will mean that everyone who is diagnosed with MND now, and into the future, can experience the best possible quality of life while fighting this insidious disease,” says Dr Sheean.

The investment from this initiative brings FightMND’s total investment in MND Care to over $11.6 million since 2017.

The Care Research Grants initiative was open to researchers nationwide, with five projects identified as the top-ranked projects for support: 

  • Professor Samar Aoun: Perron Institute Research Chair in Palliative Care, University of Western Australia, WA  
  • Professor David Berlowitz: Clinician Researcher, Department of Physiotherapy at The University of Melbourne and Respiratory Physiotherapist, the Victorian Respiratory Support Service at Austin Health, VIC 
  • Dr Marnie Graco: Implementation Scientist, the Institute for Breathing and Sleep at Austin Health, VIC 
  • Dr Anne Hogden: Senior Lecturer, School of Population Health at UNSW, NSW 
  • Dr Nicole Sheers: Clinician Researcher, the Department of Physiotherapy at The University of Melbourne, and the Institute for Breathing and Sleep at Austin Health, VIC 

Professor Samar Aoun, who was awarded the 2023 WA Australian of the Year for her work in palliative care, aims to improve the quality of palliative and end-of-life care service delivery to MND patients by understanding and addressing gaps in current practice across various settings. 

“This national collaborative approach will bring together for the first time peak MND and palliative care organisations to work together… It will establish a collective of stakeholders that includes people living with MND and their families, and has the capacity to sustain and nurture future research, workforce education, training for informal carers and service development,” says Prof. Aoun. 

Professor David Berlowitz’s project aims to develop and apply artificial intelligence (AI) to the setup and optimisation of Non-Invasive Ventilation (NIV), a mechanical breathing support used by people living with MND, as people’s needs change. 

“We believe that this AI development work is unique internationally. We currently do not have NIV devices that can really keep up with the changing respiratory needs of people living with MND. This FightMND grant can help us change that. Good respiratory support does not make MND go away, but when done well, it absolutely helps people, and the families live better with MND,” says Prof. Berlowitz. 

For the last two years, Dr Marnie Graco has been leading crucial research on how to improve the uptake of Non-Invasive Ventilation (NIV) to improve quality of life and survival for people living with MND.

“My research has shown that access to NIV is inequitable across Australia, and I have identified many problems that could be addressed to improve NIV access. This new project, funded by FightMND, will allow us to work with the MND community to develop novel, targeted solutions to these problems,” says Dr Graco.  

Dr Anne Hogden’s project will co-design up-to-date, high quality Decision Support Tools (DSTs) to empower people living with MND to be able to make informed decisions for their care and quality of life. 

“The DSTs were developed with members of the MND community, and we will now improve the range to meet the current needs of people living with MND…Rather than just reading fact sheets, the DSTs assist people to work through the options at their own pace, weigh up the pros and cons, and arrive at a decision,” says Dr Hogden. 

Dr Nicole Sheers’ research looks at whether specially developed exercises can help people living with MND maintain their breathing muscle strength to breathe deeper and cough better. 

“Breathing muscle weakness, cough and swallow problems have a devastating impact on people affected by MND… This pilot study will tell us whether people living with MND can manage this novel, proactive exercise program, as well as provide some information about the benefits on breathing, cough and swallow function,” says Dr Sheers.