Nelson Bay's Chappell family - parents Simon and Verity with children Milly, Tylah and Summah - were joined by extended family and friends for the ultra-marathon walk which raises awareness and funds for cystic fibrosis.

"The reason we do this walk each year is our daughter, Tylah, was born with cystic fibrosis and it is our small way of helping to raise as much money and awareness as possible," Verity said.

"This year we had 18 family and friends walk with Team Tylah, including our three daughters. Simon and I completed the full 65kms along with long-time family friend David Matalone, the other team members completed various distances throughout the day."

Verity said that Tylah had registered for 21kms, however, she had managed to complete 35kms, a huge effort for someone with a life threatening lung condition.

"Not only is walking 65km physically exhausting, it is also mentally and emotionally exhausting, but one day of pain and discomfort is nothing compared to what cystic fibrosis sufferers endure on a daily basis," Verity said.

"So far the walk itself has raised over $400,000 and Team Tylah raised over $6,500 with two weeks left to donate."

Simon Chappell is regarded as a rugby league guru, having played for both Nelson Bay and the Fingal Bomboras over a career spanning decades. 

He remains in the game with the Stroud club, where he is also involved as coach with the Stroud Raiders ladies tag team, which includes Verity and the girls.

The team was supported by LJ Hooker Nelson Bay, who have sponsored the event for the past five years.

The “65 Roses Challenge” is held annually to raise the funds needed to continue vital research into cystic fibrosis, a life-shortening inherited disease that attacks the digestive system and slowly shuts down the lungs.

The campaign encourages community groups and individuals across the state to host challenges themed around the number 65; all with the main aim of supporting the thousands of people living with the disease.

The treatment for cystic fibrosis is lifelong, ongoing and relentless.

The 65 roses theme dates back to 1965 when a four-year-old boy overheard his parents and health care professionals discussing his condition. Not fully being able to get his tongue around the words cystic fibrosis, he pronounced the disease “65 roses”. The nickname stuck, and cystic fibrosis organisations around the world soon adopted the rose as a symbol of support and understanding for sufferers of the disease.

People can still donate to the cause by contacting the Chappells at chappo37714@hotmail.com.