Mr Oakley has been perfecting his Lifestyle and Exercise Education Program for the past four years, but the journey to develop a tailored physical and mental assistance initiative started during his Paralympic Games mission in 2012.

Back then Mr Oakley, an equestrian rider, was training for the London Games in 2012 when he sought the assistance of Dr Nick Ball to help him get there.

Dr Ball, an associate professor of sports biomechanics at the University of Canberra, and Mr Oakley have combined to help make every day life easier for people with the degenerative condition.

Asides from individually tailored exercise regimes, the program also provides access to a nutritionist and a psychologist, as well as a much-needed peer support group.

"Many people with neuromuscular conditions have never met someone with similar conditions. There hasn't been any real peer support, which is what makes this program so important," Mr Oakley said.

It is estimated that in the ACT there are 1500 people living with neuromuscular conditions and until now there were no specific ACT health services for people with neuromuscular conditions.

"It is possible to get a neuro-specialist appointment in Canberra, but often you will wait six months to be given an appointment date, and then it could be another 12 months before that date comes," Mr Oakley said.

The program has been boosted by funding from the John James Institute to help pay for the next 12 months of training participants.

This funding covers the cost of using the university health hub rehabilitation gym, specialised equipment and access to expert consultation.

Institute chief executive Joe Roff says the program is the first of its kind in the nation and is a important step in improving support available to those living with neuromuscular conditions.

"It's a world-leading program because you have to have a holistic approach and this program is touching on the impacts of nutrition, anxiety, physical well-being and mental well-being," Mr Roff said.

"This could be the snowball that starts the avalanche in improving support for neuromuscular conditions nationwide."

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For Julian Slater, the program has been much more than simple exercise regime and has provided him and his family with access to a much-needed community of people with similar experiences.

"I found it really beneficial, not just for me physically but also just feeling part of a community. Before I came to the program I didn't know anybody else with muscular dystrophy, so I didn't know what to expect," Mr Slater said.

"Me understanding what I am capable of and what's coming in the progression of my condition allows me to help my wife understand living with this condition."

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