How You Can Help Support FightMND

An image of Tilly Simpson, Jack Simpson and his young son all wearing blue FightMND Big Freeze beanies

Two siblings share their family’s struggle with motor neurone disease to raise awareness and help find a cure.

There are around 2700 Australians currently fighting degenerative neurological condition, motor neurone disease (MND). After losing their father, Steve Simpson, siblings Tilly and Jack hope to raise awareness for the disease through charity FightMND.

When fitter and turner Steve began showing signs of motor neurone disease, his family was devastated but not surprised. Familial MND – a genetic strain of the neurological disease – runs in the Simpson family.

For Jack and Tilly, remembering their late father and sharing how MND impacts their family is important, which is why they support FightMND, a charity founded in 2014 with the purpose of finding effective treatments and a cure.

Bunnings partners with FightMND

Bunnings is a major partner of FightMND and, as in previous years, we will continue support by selling Big Freeze beanies and buckets nationally, as well as holding a nationwide fundraising BBQ on May 17 – adding to more than $4.9 million already raised.

An image of MND suffer Steve Simpson wearing a blue beanie

Jack and Tilly’s motor neurone disease story

Jack and Tilly share memories of their dad here, in hope of raising awareness and funds for FightMND.

Q: Tell us about your dad. What’s one of your favourite memories of him?

Tilly: He loved building and fixing things. When we were kids, he used to construct all kinds of fun things – he built Jack this amazing cubby house in a tree that was probably five or six metres high.

Q: When did you notice something was wrong?

Tilly: He first started showing signs of MND in 2015. That’s when he got the genetic test done and found out he carried the gene. His progression was slow to begin with – the form of MND in our family comes with concurrent frontotemporal dementia. At first he struggled with short-term memory loss; when he was building things, he’d forget where he put his tools. Then there were the social aspects where he’d say things that were a bit out of place.

Jack: He was first told, ‘You have six good months’ and obviously that put a downer on his outlook, but he did a lot to fight it, like keeping busy and exercising.

Q: What was the progression of the disease?

Tilly: We ended up losing him to pneumonia in 2023, which was a blessing and a curse. He never had to go through that really slow, painful, drawn-out passing. But it was sad because it hadn’t progressed and he still had potentially a lot of life left. I’m so grateful we got almost 10 years of squeezing every little bit out of every minute that we had with him.

Q: Familial MND means a 50 per cent chance of you having the gene. Have you been checked?

Jack: No, we haven’t. I don’t think life would be as fulfilling if I knew that there was that end to it. If we do have the gene, there’s a 98 per cent chance we will get motor neurone disease. It’s almost a certainty.

Q: Jack, you and your wife, Caitlin, had a baby using IVF. Was that a hard decision?

Jack: It was a hard decision. The idea of doing it was to reduce the risk for my son, while not finding out my chances of having the gene.

Tilly: By going through that process of IVF [and genetic testing], you reduce the chances of MND in your child from 25 per cent to one per cent, or less, which is about what it is in the general population.

Q: What do you wish people knew about MND?

Tilly: I wish people knew – particularly with familial motor neurone disease – just how devastating it is on the whole family. We’ve lost our grandfather to this. We’ve lost both our aunties and our dad, and we will lose 50 per cent of our cousins as well. Your family gets destroyed. It’s an inescapable thing we live with.

Q: How important is FightMND?

Tilly: It’s good to know we’re not fighting this alone. Everyone is really pushing to find a cure and to give us hope that if our time comes we might have options for treating or at least managing the condition.

An image of MND sufferer Steve Simpson with a saw horse in a field

MND Fact File

MND is a condition affecting the nerves known as motor neurons, causing weakness in the muscles and leading to paralysis.
50 per cent of people living with MND are diagnosed when they are under the age of 60.
Up to 15 per cent of MND cases are familial (which means there is more than one occurrence in a family).
Around 2700 Australians are living with MND at any one time.
Multidisciplinary coordinated care enhances the quality of life for those living with MND and may help them live longer.
While some people can live a long life with MND, the average life expectancy is 27 months from diagnosis.