Cystic Fibrosis Awareness Week
For immediate release – Tuesday 14 August
Cystic Fibrosis Awareness Week – can you help New Zealanders living with Cystic Fibrosis increase their life expectancy?
This week is Cystic Fibrosis Awareness Week (13 – 19 August) and Cystic Fibrosis New Zealand is asking the public to support the 500 Kiwis living with New Zealand’s most common life-threatening genetic disorder.
Cystic fibrosis (CF) limits breathing, digestion energy levels and life expectancy. There is currently no cure.
For babies diagnosed with CF, it’s a race against time. In 1968, the outlook for children with CF was bleak – the majority would die before the age of 5. By 1988, many lived into teenage and early adulthood. By 2018, with increased treatment options, it has risen to 37. We’re almost halfway to the average Kiwi life expectancy, but we’re still far behind other countries where life expectancy has reached 40+.
Kiwis with CF do not have access to the same world-class medicines as those living in countries such as Australia, the UK and America. For those that would benefit from these medicines, this is a heart-breaking situation.
11 year old Tayler (attached) and his family are helping to raise awareness by sharing their story,
“When Tayler was diagnosed we were told that he was lucky to be born in this generation because of the new medicines being developed overseas. Sadly, New Zealand is denied access to them due to the cost. 11 years later and we are still waiting”, said mum Stephanie.
CFNZ Chief Executive Jane Bollard is thankful for any assistance Cystic Fibrosis NZ receives from the public that help provide the ongoing support and advocacy for the CF community.
“Funds raised help us to continue our services, such as contributing to research, providing education, information, advocacy, and medical equipment that are not always funded by the government. Our social workers support people with CF and their families throughout their lives – right from when a new baby is diagnosed,” Jane says.
“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 families and impacts on quality of life” she says. “We’d love to make their lives easier by getting them access to treatment and medication that is routinely available overseas.”
During Cystic Fibrosis Awareness Week the main street collection will be on Friday 17 and Saturday 18 August. You can also donate $3 to help children and adults living with CF in their race for life by texting ‘HELP’ to 4462, or find out more on www.cfnz.org.nz.