Carol Brown (Tasmania, Australian Labor Party, Assistant Minister for Infrastructure and Transport) Share this | Link to this | Hansard source

I've just come from a wonderful event hosted by the Parliamentary Friends of MND Group, of which I am a proud co-chair, along with Mr Alex Hawke MP from the other place. During the event, parliamentarians had the opportunity to hear directly from people living with MND. I'd like to thank those parliamentarians who attended the event and I extend that thank you to the MND president, Samar Aoun, and the CEO, David Ali. I would also like to sincerely thank Phil, Janet and Melanie for so eloquently expressing the impact that MND has on their and their families' lives and the issues faced in getting support for a range of services.

Currently in Australia there are 22,100 people living with MND. Today we had the privilege of launching the MiNDAUS patient registry, which will work to tell the stories of Australians living with MND. Even in its infancy, the registry is already an important collaboration between MND researchers, clinicians and organisations that will help governments across the country. It is truly a step in the right direction towards true collaboration and decision-making which is influenced by the lived experiences and care currently received by individuals with MND. The registry is bringing great hope to individuals and families living with the repercussions of an MND diagnosis.

The Parliamentary Friends of MND group was created to provide a non-partisan place for members and senators to support the work of MND Australia. Today's event was a demonstration of just that. We'll continue to work closely with MND Australia to deliver informative events right here in support of people with MND.