STATEMENTS BY MEMBERS

Ms STEGGALL (Warringah) (13:35): I want to talk about Warringah constituent Ron Hobden, also known as 'Hobbo', who sadly passed away a few weeks ago from motor neurone disease. Ron was a husband to Annie, a father to Lizzie and Henry, and a passionate rugby player. Diagnosed in 2023 while he was training for a marathon, his children were only one and three at the time.

MND took away his ability to walk and hold his children, but Ron said to us, 'Research means hope. It's the only thing standing between despair and a better future.' It was such a privilege to meet with him and his family, and incredibly sad to attend his funeral a few weeks ago. Every day in Australia, two people are diagnosed with MND and two people die from MND.

We know there are diagnostic clusters—young men, people who play contact sports and those that live in regional areas. But the data is sporadic and anecdotal. Developments have been made to collect proper data.

New South Wales now has made data collection mandatory, but that needs to be a national approach. We also need increased funding for research and clinical trials, and better support and respite for carers. Let's honour all those impacted by MND with action from this government.

We need to increase investment in the research, the data collection and the care. This is such a tragic disease. I give my absolute condolences to Annie, Lizzie and Henry, and pledge that we will continue fighting this horrendous disease.