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‘Nothing will stop me’: Stuart Place rides 15,451 km for son’s rare disease

Orbis’ Stuart Place is riding from Melbourne to the Moon and Back to fund a treatment for the “monster of a disease” that his youngest son was born with. The investment industry is rallying behind him.
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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 genetic-based therapeutic program at the Florey Institute here in Melbourne. Every dollar raised from this mission to the Moon and Back will go to The Florey Institute, who have scientists waking up every day working on a precision medicine for Will and this debilitating disease.”

    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.

    Lachlan Maddock

    Lachlan is editor of Investor Strategy News and has extensive experience covering institutional investment.




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