Rare disease inspires group to run from Canberra to Warrnambool

It will be no mean feat for the 11 runners, says Matty Stewart.

But for him, Dan Tehan and James Kenna, it's nothing compared to what their loved ones went through when battling a rare disease.

The three have joined together to raise funds and awareness about Creutzfeldt-Jakob disease (CJD).

It's a cause close to their hearts.

Mr Stewart's dad Bobby, Mr Tehan's mother Marie and Mr Kenna's father Jimmy all died after being diagnosed with the disease.

All had rapid deterioration in their health, succumbing to the disease within two months after experiencing major symptoms.

Mr Stewart said it was hard to witness the rapid decline of his father, who died six weeks after he was diagnosed.

His father was a keen runner, which is one of the reasons the trio decided to take part in the charity run.

"We want to raise funds and awareness," Mr Stewart said.

"It's a rare disease that a lot of people don't know a lot about."

Mr Stewart said the three had been running each day to prepare for the run.

He said he knew it would be challenging, but the last months of their parent's lives was also a huge challenge.

"We know the last weeks of their lives were pretty tough," Mr Stewart said.

He said the group would ensure they had a spare pair of shoes to get through the seven-day run.

Along the way, they will talk to people about the disease and host a sportsman's night.

"It's as much about a bit of male camaraderie and friendship as it is raising awareness," Mr Stewart said.

He said he hoped research would reveal more about the disease and how it can best be treated.

Mr Stewart confessed he hadn't always loved running, but he was happy pulling on his sneakers to honour his late father.

"I wouldn't say I love running but I'm probably enjoying running more in later life," he said.

The 11 runners will cover 950 kilometres over seven days.

They will start the journey at Mr Tehan's parliamentary office in Canberra on Saturday, October 7 and plan to run into Warrnambool on Saturday, October 14.

Mr Stewart said the group of runners was blown away by the support they had received.

"The buy-in has been enormous so far," he said.

"We've had about $35,000 in pledges so far. It's incredible."

CJD is an extremely rare and fatal neurological disease that has no effective treatment.

It causes the brain to degenerate and become spongy, leading to dementia and death.

You can show your support by donating here.

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