The challenge 

Motor Neuron Disease (MND) and Spinal Muscular Atrophy (SMA) are progressive neurodegenerative conditions. Adults living with these conditions often experience increasing muscle weakness, loss of independence and a significant decline in quality of life. MND affects about 2,800 Australians, with a median survival of 2–4 years from symptom onset. SMA affects 1 in 10,000 live births, and although more people are now living into adulthood, the economic and social costs are in the hundreds of millions annually in Australia.

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Despite significant treatment advances, more reliable clinical, electrophysiological and biological markers are needed to better understand disease progression and support more informed treatment decisions. Dr Aicee Calma's research is focused on developing these tools to improve diagnosis, disease monitoring and personalised care for adults living with SMA and MND.

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“This research brings together neurophysiological markers, blood biomarkers, and clinical assessments into a toolkit with the aim of helping clinicians better diagnose and manage adults with motor neuron diseases.”  

Dr Aicee Calma

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The role of philanthropy

Hearts & Minds funding, as nominated by Magellan Investment Partners, supported Muscular Dystrophy NSW to award a partial scholarship to Dr Aicee Calma, allowing her to dedicate time to advancing research into MND and SMA. Through this research, Dr Calma and her collaborators are gathering valuable data from a large group of patients while building partnerships that will strengthen future research and accelerate progress in the field.

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Early findings are helping researchers identify more objective ways to measure disease progression and its impact on patients’ daily lives. By combining information from clinical assessments, specialised tests and blood samples, the team is building a more comprehensive picture of disease progression that could improve diagnosis, monitoring and treatment decisions.

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What this could unlock

As researchers gain a better understanding of disease progression, this work could provide clinicians with more reliable tools to support treatment decisions and personalise care. It could also help establish validated biomarkers for multi-site Australian clinical trials and accelerate the development of new therapies for people living with MND and SMA.

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This project is supported by Hearts and Minds Investments, as nominated by Core Fund Manager,  Magellan Investment Partners. For further information and updates, visit Muscular Dystrophy NSW.