Claire Sullivan

We speculate that the cause of the disease relates to genomics, so your genetic predisposition, cell biology, so something that's happening at the cellular level, and societal and environmental factors.

About 15% of cases have a link to a genetic mutation.

But if you've got these genes, you don't necessarily get the disease.

There's something else going on.

The fact of the matter is we just burn on up about this disease and we certainly don't know what's in it.

We don't actually know that for certain yet either.

Would you believe in Australia, we don't know exactly how many people had motor neurone disease.

It appears from the disparate data that we have, there's a correlation with agricultural areas, but it's not yet proven.

There's a lot of speculation around the link between pesticides and insecticides, but it's not yet proven.

Even with the case of high-impact sports, there's a speculation around hair trauma and that trauma reducing the ability of the blood-brain barrier to function, but it's still speculation.

Just stop admiring.

It is heartbreaking.

Neil lived with the disease for 13 years.

I hear of people who don't even make it three months from being diagnosed.

We don't know enough about the disease to be able to plot trajectories, to know the different phenotypes or subtypes of the disease and how that influences the viability.

What I do know is one of the big problems we've got in the country is the time to get diagnosed.

It can take up to 12 months.

And that's because there's no diagnostic test.

It's a pathway of exclusions.

But you knock out everything and elect with this horrible diagnosis.