Huntington's Disease is often referred to as a ticking time bomb, but a new drug could provide some hope for patients suffering from the condition that's confounded doctors for decades.
Melbourne school teacher Sean Egan lives each day in the knowledge that he's "gene positive" to the degenerative Huntingtons disease.
It means that sometime, probably in his 40's or 50's, symptoms will begin to emerge.
'You just can't afford to think I'm going to be OK when you might not be,' Mr Egan tells SBS.
Initially, the onset brings jerky movements and can progress to uncontrolled spasms and depression.
Patients also have problemts with their memory, attentional functions and staying organised.
Recent progress includes positive initial testing of a drug known as PBT2, which is hoped to significantly extend sufferers' life expectancy.