Just 31. Of course, every individual diagnosis, every family's struggle and every family's loss is equal. But I think we owe a particular debt of gratitude to people like Neale and Jai and their families who turn a private struggle and a private story into a public story, one that lifts awareness of a condition like this and builds support for research, as both of them have been doing.

There are two medicines on the PBS to treat MND, both of which slow the progression of the disease: riluzole and edaravone. But usually that slowing is only measured in months, certainly not years. But on Friday I joined the MND community at their annual conference in Adelaide to announce a step change in treatment. From 1 October, a new drug will be listed on the PBS, known as Qalsody. It's only available for a relatively small cohort of patients that have a particular mutation of the SOD1 protein, but the results are quite extraordinary. I was joined by Luke, who's only 34, and his two beautiful young children, who were running around the media conference. Luke has been on Qalsody on a compassionate access basis for 2½ years. He reported that in that extended period of time, for an MND patient, he has experienced no progression of the disease. Indeed, there are some reports of patients on Qalsody actually experiencing an improvement in function.

This is a highly effective but very expensive treatment. Without listing on the PBS, it would cost patients more than $28,000 for every single script. It will now be available for $25. Unfortunately, it doesn't work for all MND patients. The cohort is relatively small at 70 patients a year. It's still not a cure, but it is a step change in hope that we are actually making progress in the fight against what Neale Daniher very rightly called 'the beast'.