Local muscular dystrophy charity finds winning fundraising formula in boxing and samurai swords

Canberra’s best boxers going head to head, a samurai sword show and a sporting memorabilia auction … all to raise funds for a local muscular dystrophy charity.

It may sound like a chaotic and unseemly blend of activities but it’s supported Capital Region Muscular Dystrophy’s programs and services for the best part of a decade.

The Muscle Up Charity Fight Night returns in its eighth iteration this Saturday 26 August, headlined by two rematches between boxers Bailey Litster and Ikenna Enyi, as well as Monique Suraci and Alexus Taylor-Davis.

When you begin to learn more about one of Capital Region Muscular Dystrophy’s founding members, Rob Oakley, everything begins to make a confounding amount of sense.

Rob remembers first experiencing the symptoms of muscular dystrophy, typically increasing weakness and loss of muscle mass, as a teenager at 15 or 16 years old.

Soon after, he was diagnosed with the facioscapulohumeral variation of the genetic disorder, which most seriously affects the muscles of the face, shoulder blades and upper arms.

“It’s slowly but surely been having an impact ever since,” Rob says. “I’m 61 now and still getting about, but over time you just become progressively less mobile.”

More aggressive variations of the disorder, such as Duchennes, can limit people’s lives to early adulthood and put them in a wheelchair by their teenage years.

But rather than holding Rob back, he says there is an inextricable link between the successes he’s enjoyed in the last 40 years and the degenerative disorder.

“I often say, ‘If I didn’t have muscular dystrophy, I’d probably be a fat, old, ex-rugby union prop leaning on a bar telling someone how good I used to be,'” he jokes.

Rob went on to have an almost two decade-long career in the equestrian sport of dressage and a further decade in water skiing – representing Australia in both sports.

This goes some way to explaining why there’s a sports memorabilia auction. But what of the samurai sword show and professional boxing match?

“When I was competitively waterskiing and skiing for Australia, because I wasn’t part of the Australian Institute of Sport or anything, I had to do my own training,” Rob explains.

“One of the gyms I was at was a boxing gym and they had a white collar boxing tournament coming up. They were looking for a charity to be involved with and well, there I was.

“Two or three of the pretty prominent figures in the Canberra boxing community came to us that night and said, ‘Look, we could really make something out of this.'”

One of the more colourful boxing identities – an importer of Japanese antiquities including samurai swords – also suggested a sword demonstration.

Just like that, Capital Region Muscular Dystrophy’s major fundraiser, which raises a large part of the $30,000 to $50,000 needed to run the non-profit annually, was born.

For more than a decade, the charity has provided everything from ad hoc support through to funding the Canberra United Power Soccer team and specialised support programs.

These include in-school sports programs and the Lifestyle and Exercise Program (LEEP), based on training originally developed for Rob when he was a Paralympian.

“All the things that as a top-level athlete I had access to and took for granted back in the day are the sorts of things we’re trying to provide for people now,” Rob says.

But the charity’s first aim when it formed was to convince the ACT Government that more needed to be done to support people with the condition.

“Right from an early age, when I started to investigate what was happening to me … it was evident there was actually nothing in Canberra to help [me],” Rob says.

“Back in the 80s, you had to go to Sydney or Melbourne to get a diagnosis and you needed a referral and it might take six or eight months to get an appointment.

“Parents with kids with Duchennes are still in that boat to this day, because there are little to no government-provided services at all for muscular dystrophy.”

However, Rob says the tide is finally starting to turn. “It’s taken some 20-odd years, but we’re at a point now where the government is actually listening,” he says.

“We’re very hopeful we’ll have a multidisciplinary clinic to help treat people with neuromuscular conditions up and running in Canberra in the very near future.”

The Muscle Up Charity Fight Night 8 is at the Hellenic Club, Woden, on Saturday, 26 August 2023 from 6:30 pm. Tickets are available here.