Carol Brown (Tasmania, Australian Labor Party) Share this | Link to this | Hansard source

This week advocates, families and people living with motor neurone disease gathered in Parliament House for the launch of the Parliamentary Friends of Motor Neurone Disease for 2026. While I was unable to attend on the evening, as I was required in the Senate chamber, I am proud to be co-chair of the parliamentary friends group, alongside Alex Hawke. The group brings together members and senators from across the parliament with shared purpose to raise awareness of motor neurone disease and support better outcomes for Australians living with MND.

As everyone in this place knows, parliamentary friendship groups play an important role. They create space for collaboration, and they ensure voices from the community are heard. That is particularly important when it comes to a disease like MND. MND is one of the most devastating diagnoses a family can receive. It's progressive, it is life limiting, and at present there is no cure. Around 2,700 Australians are living with MND today. The average life expectancy following diagnosis is just two to three years. But statistics alone cannot capture the full reality of this disease. Statistics alone cannot capture the full understanding of what people go through. They represent real lives, real families and communities facing extraordinary challenges. Motor neurone disease affects families, partners, children and entire communities. It changes daily lives in ways that are hard to imagine until you see it up close.

At the launch earlier this week, those attending heard from researchers and advocates about the progress being made in clinical trials and treatment access. One of the most moving moments of the evening came when a fellow Tasmanian, Helen O'Neill, addressed the room and spoke about losing her husband, Phil, to MND. Phil was diagnosed on 4 October 2024. From the beginning the progression of the disease was rapid. Within two months of the first symptoms appearing, Phil required round-the-clock care. Helen had spent over 50 years working as a nurse. She understood illness and care better than most, but, as she explained, nothing prepares a family for watching someone you love gradually lose their independence. Phil wanted to remain on their hobby farm for as long as possible. The community rallied around them. Family and friends helped build ramps and modify the bathroom so Phil could continue living at home. Helen spoke honestly about how difficult it was for Phil to accept needing so much help. He hated that his wife and daughter had to do so much for him. Phil passed away on 11 July 2025, around 280 days after his diagnosis, just a month before what would have been his 73rd birthday.

Helen shared her story to remind us that the decisions made in this place have a real impact on people living with MND and their families. Her story is a reminder of why this work matters. Investment in research is about improving quality of life, it is about giving families more time together, and, ultimately, it is about extending people's lives. The Parliamentary Friends of Motor Neurone Disease provides a forum for that work. It brings together parliamentarians, researchers, clinicians, industry partners and families to ensure that progress continues. But, as Helen's story reminds us, there is still more work to be done. We must continue to support research. We must continue to strengthen clinical infrastructure. And we must continue to stand alongside Australians living with MND and their families.

I also want to thank MND Australia for their leadership and advocacy and to acknowledge the clinicians and researchers working tirelessly to find new treatments. In this parliament, we have a responsibility to act with purpose for the 2,700 Australians living with motor neurone disease today and for the families across the country hoping that tomorrow will look different.