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Home / Hawkes Bay Today

Cystic fibrosis awareness key to support

Ruby Harfield
By Ruby Harfield
Hawkes Bay Today·
11 Aug, 2017 10:16 PM3 mins to read

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Hawke's Bay Cystic Fibrosis New Zealand secretary, Claire Fisher, with her daughter Amber, 11, who was born with the condition. Photo/Duncan Brown

Hawke's Bay Cystic Fibrosis New Zealand secretary, Claire Fisher, with her daughter Amber, 11, who was born with the condition. Photo/Duncan Brown

Cystic Fibrosis Awareness Week will have special importance for Hawke's Bay's Fisher family.

The annual fundraiser, organised by Cystic Fibrosis New Zealand (CFNZ), will be held next week with events around the country.

Hawke's Bay branch secretary Claire Fisher, whose 11 year-old-daughter Amber has cystic fibrosis, said awareness week was a critical way of getting more support each year.

"I think it's important because as a parent of a child with cystic fibrosis and as secretary of our local branch, awareness is key for us."

People who know more about day-to-day struggles of a person with cystic fibrosis are more likely to donate to the charity, she said.

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CFNZ provides information and support to families as well as research into management of, and possibly a future cure to, the condition.

"For me CFNZ has been awesome for our family's life by supporting us and providing us with not only medical equipment but also networks," she said.

"A big thing for me is research, that's what's going to lengthen my daughter's life."

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People born with the condition have to fight and manage it for the rest of their lives because, at the moment, there is no cure, Mrs Fisher said.

"You can't beat cystic fibrosis, all we can do is work with the medical teams and try to help Amber live the absolute best life she can live."

When Amber was diagnosed it was traumatic and isolating but CFNZ has provided much needed support to the Fishers and other families living with the burden of cystic fibrosis, she said.

In association with awareness week, the local branch will be holding their fourth annual sixties themed casino night fundraiser on September 2 at the Havelock North Function Centre.

"It will be an awesome night, we try to do it as close to awareness week as possible," she said.

CFNZ chief executive Jane Bollard said funds raised from events like this helped social workers support people with cystic fibrosis and their families throughout their lives.

"Children and adults need physiotherapy twice a day, a lot of medication - often using nebulisers which can take 40 minutes a day. This is exhausting for already busy families.

"We'd love to make their lives easier by getting them access to equipment and medication that is routinely available overseas."

The Hawke's Bay branch of CFNZ will have members with collection buckets outside supermarkets in Napier, Taradale and Havelock North throughout the week.

Nationally, Choice Hotels will be donating $2 from every night stayed in participating hotels during awareness week to the charity.

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Cystic fibrosis is the most common, life-threatening genetic disorder in New Zealand and one in 5000 babies in New Zealand is born with the condition.

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