MND NSW welcomes the NSW Government’s announcement that motor neurone disease (MND) will become a notifiable condition, marking a significant milestone in the fight against this devastating disease.
Requiring clinicians, hospitals and laboratories to formally report all diagnoses will provide more comprehensive and reliable data, strengthening understanding of MND and supporting research into its causes, patterns and progression.
MND NSW has consistently supported measures to improve data collection and research capability, recognising that better evidence is critical to accelerating progress toward more effective treatments and ultimately a cure.
MND NSW Chief Executive Officer, Liam O’Meara, said the reform represents an important step forward for the community.
“This is a critical step forward for people living with MND and those who care for them. Access to better, more complete data will strengthen research efforts, improve our understanding of the disease, and support the development of more effective treatments over time,” Mr O’Meara said.
“MND NSW has strongly supported this reform, and we are pleased to see it come to fruition. It puts NSW in a stronger position to contribute meaningfully to national and global research efforts.”
MND NSW also acknowledged the leadership and advocacy that helped deliver this outcome, including clinicians, researchers, policymakers and members of the MND community whose voices and lived experience continue to drive change. In particular –
- Pr Dominic Rowe, for his clinical leadership and commitment to advancing neurological care
- Helen Dalton MP, whose advocacy has been unwavering and instrumental in bringing this issue to the forefront
- Annie Hobdon, a valued Board Member of MND NSW, and Ron Hobdon - whose lived experience reminds us why this work matters every day
- The Hon. Ryan Park MP, NSW Minister for Health, for listening to the community and driving this important reform forward
Mr O’Meara said while the reform is not a solution on its own, it is a critical enabler.
“This is not the finish line, but it is a meaningful and necessary step. It demonstrates what can be achieved when government, clinicians, researchers and the community work together toward a common goal.”
MND NSW remains committed to supporting people living with MND and their families, while continuing to advocate for progress in research, care and awareness.
