Sofia Levin

You have no idea.

You don't know anything about the disease.

You know, you've heard about it vaguely through the football community and like the ice bucket challenge prior to that.

Yep.

People...

understanding what it is more and more, but mostly it's just something awful that doesn't seem to happen to anyone.

Although now when I speak to people, everyone seems to know someone who knows someone.

But MND Victoria, they hold your hand through the entire process, what to do, what your options are.

They hire out equipment, they have counselling, you have people assigned to you

your family or whatever your core group is to help you through it.

And their tagline is until there's a cure, there's care.

And

you cannot underestimate how much of that you need, particularly because the age group that gets it most is kind of on the fringe of the disability benefits.

So I think if Dad was one year over, it would have chewed up the entirety of the inheritance for the kids that he'd worked so hard his whole life for.

And most people get this disease around...

you know, 64, 65 as well.

Although that said, I've heard some horrendous stories that seem more and more common about, you know, young parents in their 30s who are leaving behind families.

And yeah, it's awful.

So MND Victoria, they don't really get any government support.

It's all fundraising.