Later this month, the final Santa Speedo Shuffle will be held, a celebration tinged with sadness as it honours the event's founder, Andrew Prowse, who last October died from cystic fibrosis, aged 34.

The 10th and final Santa Speedo Shuffle for cystic fibrosis will be held on Sunday, July 31 and Andrew's wife Heidi, also the event's co-founder, hopes it will be a big last hurrah, with a goal of raising $200,000 for Cystic Fibrosis ACT.

"I think there's every type of emotion with this event," Heidi said.

"Because it feels like he is finally getting the send-off that he deserved. And, hopefully, we can raise that target and have that acknowledgement to him and the community.

"But it's also painful because it was the event we did together. I had to pack Santa hats the other day. Made one of my besties come over and help me because Andrew also did that, that was his job. So, I feel all of the emotions.

"But I also feel the love of the community once again getting behind it."

Cystic fibrosis is a genetic, life-threatening disease that damages the lungs and digestive system and, for which, there was no cure.

Andrew, a policy analyst at the Department of Social Services, worked hard to further the cause of families coping with the disease and was a mentor to many, including 18-year-old Hamish Hughes, from Googong, who also has cystic fibrosis.

"He was able to help me things like everything from managing physio to getting the most out of your day. So it was a big thing when he died," Hamish said.

The last Santa Speedo Shuffle was held in 2019. It's hoped as many people as possible will register for the final one. Hamish will be there.

So, too, will Bruce teenager Kate Daly, who also has cystic fibrosis. A law and political science student at the Australian National University she, like others with the disease, has to take large amounts of medication and undergo daily physiotherapy and exercise to keep her lungs working.

Her life has also changed since the drug Trikafta was this year made available on the Pharmaceutical Benefits Scheme for the first time for Australians with cystic fibrosis aged 12 and above.

Kate has been on the drug for two months. Her lung function, which had fallen to below 60 per cent, is now at 100 per cent.

"It's really saving lives," she said.

"It's been around for years but before it was put on the PBS it cost about $250,000 a year, which was just not feasible for any normal family. So putting it on the PBS, it now costs $40 a script."

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Kate has been in almost every Santa Speedo Shuffle.

"It's going to be great and we're going to go hard because it's the last one," she said.

Also taking part in the shuffle will be Taylor mum Sally-Anne Clarke and her daughter Millie, 8, who has cystic fibrosis.

"This is our sixth shuffle as Team Millie but this is her first shuffle and she's so excited," Mrs Clarke said.

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