Cystic Fibrosis Taranaki supports PWCF and their families to improve quality of life and life expectancy for 16 people with cystic fibrosis (PWCF) based in Taranaki.
Possibly, the most important thing our branch has ever been involved in is the Trikafta for Kiwis campaign. Cystic Fibrosis Taranaki has produced a booklet of stories Tales of Trikafta from Taranaki about living with CF and the hope a new life-saving drug, Trikafta, brings. It contains links to Carmen Shank’s petition putting pressure on government to fund this drug. We have distributed nearly 700 copies throughout the community. The petition closing date has been extended to September. Funds for a second print run of these booklets would help maintain the momentum of our campaign.
For 90% of PWCF having access to this drug in New Zealand is the difference between life and death.
PWCF suffer from frequent lung infections and poor digestion requiring multiple hospitalisations and extra calorie intake. Our branch pays for hospital boredom busters, petrol vouchers during hospitalisations, supermarket vouchers, assistance with heating and warm clothing.
Although, PWCF cannot mingle in the same space due to cross infection risks, we try to organise a social dinner for families at least once a year. This gives a reprieve from the daily grind of the disease and helps us identify any needs we might have missed. This is another cost to our branch.
The philosophy of Cystic Fibrosis Taranaki has always been that no family should be financially compromised because of the condition.