This year’s top 10 stories included a peek into AustralianSuper’s international equities build out in London, AMP’s move to slash employee benefits, and plenty of hard-hitting analysis of the issues that matter in institutional investment. But the real story is how readers helped shape all of that coverage.
If 2024 showed us anything, it’s that super funds have to become more than accumulation machines if they want to maintain their status as the trusted guarantors of most Australians’ financial future.
‘Nothing will stop me’: Stuart Place rides 15,451 km for son’s rare disease
Stuart Place has been cycling about 300 kilometres a day for the last 18 days. He has another 32 days to go. He intends to ride the distance from Melbourne to the Moon and Back – Moon, Oklahoma, and Back, Texas – which works out to 15,451 kilometres, about seven to nine hours a day on the bike, and saddle sores.
“Once you start getting them you can’t get rid of them unless you rest for a couple of weeks,” Place tells ISN. “It’s all about management of that now, and it’s only going to get worse.”
Place is putting himself through that for his youngest son, Will, who was born with a neurogenetic condition so rare that its only name is its genetic location: SLC-6A1. It occurs in approximately one in 35,000 births. At the age of 14 months, Will was having up to 150 seizures a day – falling to the ground every 10 minutes. He’s autistic and non-verbal, has behavioural, sleep and movement disorders, and is intellectually disabled. It’s a “monster of a disease” with no treatment. Place is hoping to raise $768,000 to develop one.
“We’ve set up a couple of genetic-based programs here in Australia. One is at the Florey Institute, here in Melbourne. The other one is at the Children’s Medical Research Institute in Sydney. The event is trying to fund for the Florey Institute because they’re more progressed in their development, and we think we’ve got a better shot at getting something faster to Will and other kids.”
That treatment won’t cure Will, but it might help him to talk, or even one day live independently. Right now, He’s currently in a kindergarten school with a full-time aid. Being non-verbal, his style of communication is “very different” – more than anything he loves music, Place says. His favourites are Taylor Swift, Ed Sheeran and Katy Perry.
“Music speaks to him, that’s how he communicates. He’s on a sensory seeking mission all the time; he’s trying to find stimulation, whether it’s sound, movement, vibration. But his future is not looking bright unless we do something for him.”
Place has trained for two years for the challenge. He’s on his bike at home at 4:30AM for the first 100 kilometres of the day. At lunchtime he heads to a specially-built studio in Melbourne’s CBD where people can watch him ride between 12 and 2. He’s back home at 6:30 to spend time with his family and then on the bike from 8-10:30PM. The weekends are a little easier, even though he rides further – he doesn’t have to balance his job as an institutional client manager at Orbis with his cycling. The investment industry has rallied behind him, with support from IFM Investors, Paradice, Allan Gray and Orbis, and the Association of Superannuation Funds of Australia.
“The industry’s really coming together. Everyone is really pulling for us, so when I’m sitting there riding my bike I’m thinking ‘what is happening?’ – the magnitude of what’s happening. I’m in disbelief that what we’ve planned has actually happened. Even if it finished today we’ve got $180,000. I always said I wanted to do this so I would know that as a parent I’m doing all that I can.”
In the studio, complete strangers come to watch, make donations and pass on messages of support.
“I had an eight year old boy give me a card and $120 of his savings. I didn’t want to take it, but his grandmother insisted because he wanted to contribute to the cause and the ride. That nearly broke me. Strangers come through and donate a thousand dollars… Today somebody came through as I was setting up – a young fella with ulcers on his brain who knows he’s going to pass away. He came in and gave me a hug and said ‘mate, what you’re doing is amazing’. My wife was there and we couldn’t believe what we were hearing and seeing.”
With weeks still to go, there’s days when Place is crying or laughing. He’s exhausted, and is only going to get more so. But when he hits that last kilometre he knows he’ll feel “pure elation”.
“I’m pretty confident I’ll get there. I’m doing this for my son, and there’s nothing that will stop me. Any parent, or anybody with a loved one, would go to the moon and back for them. I’ve got the ultimate motivation.”
You can donate to Stuart here.
