WHEN Bill Moss found out he had a rare muscle-wasting disease, he didn’t react the way most people would.
The 28-year-old Sydney University economics graduate was informed that his incurable condition would soon enough leave him unable to walk, and then to even hold a coffee cup.
He was advised to “enjoy his life” before facioscapulohumeral dystrophy, or FSHD, left him in a wheelchair.
But instead of ditching the nine-to-five for the stress-free lifestyle he was recommended, Bill set himself a series of challenges.
“People take it in different ways,” the 62-year-old told news.com.au. “My view was, I need to save to buy a house, have money for kids and I want to find a cure for the disease.
“I had to have a normal 40-year career in business in 10 years. By 35, I had to be in a position most people would be in at 50.”
Starting out as a trainee at ANZ, Bill worked his way up to head of property and banking at Macquarie Bank’s “Millionaires’ Factory” and retiring with a staggering payout of $40 million.
He had two children, Natalie and Stephen, with his first wife Denise. He was working 16-hour days, seven days a week, despite his growing struggles with movement thanks to a degenerative disease he’d unknowingly lived with since childhood.
“Suddenly, a lot of things were explained,” he said. “I had a lot of muscle problems as a kid but never knew why. By the age of 12, I couldn’t hit a ball or kick a goal, and my running slowed.”
He admits the pressure of his fast-paced job took a severe toll on his body.
“I had 1200 staff, I was always on a plane, I wanted to achieve something.
“One day, you go to the carousel and you can’t pick your luggage up. You work around that, then the next time you can’t get out of your seat to go to a meeting.
“I used to fall over all the time. One day you fall over and you can’t get up.”
Bill was surprised by the lack of interest in Australia. If he fell in Sydney’s Martin Place, 20 people would walk past, but if he fell in an Asian country, 20 people would stop to help him up.
After quitting his job in banking at 52, he set up a global research foundation for FSHD in 2007, and quickly discovered the challenges of getting people to give to a charity rather than a business — especially for such a rare condition.
“That was a big project,” he said. “There was no database, people didn’t know what it was. There was a lot of misdiagnosis. It’s been a really interesting journey.”
The foundation has raised more than $4.5 million for research and made world-first breakthroughs in treating FSHD and expanding knowledge about muscle use, bone density and other age-related issues.
He created an app that allows donors to see how the foundation spends its money, which it is now sharing with other non-profits.
Bill’s daughter Natalie manages the organisation. She ran a successful events and PR agency for six years after university, but it was only when she tested negative for the genetic condition that she realised she wanted to follow in her father’s footsteps.
“That moment changed my whole future,” she told news.com.au. “Instead of getting excited, I burst into tears.
“Part of me wanted to give dad a hug and say, ‘I’ve got it, we’re in it together.’
“I realised that was the most stupid thing to think. I’m healthy.
“I thought, I’ve got to do something now.”
The 28-year-old says her father’s dedication is an inspiration. “I’m kind of here for more people than just him now.
“He can’t pick up a cup any more, he needs a piccolo espresso. He is very, very fragile, he has the muscle mass of a 100-year-old. I see him deteriorating. It’s what motivates me.”
Her involvement hasn’t persuaded her father to take a step back or relax his determined approach to life, however.
“Today I work as many hours as when I retired, just on different things,” he said. “The foundation has been very successful. We’ve created a model that works internationally. We’re the epicentre of this.
“Curing this disease is not possible, it’s probable.”
Find out more about FSHD here or take part in fundraiser The Sydney Chocolate Ball this Saturday May 28
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