Cystic Fibrosis New Zealand Reception
Rau rangatira mā, e kui mā, e koro mā, e huihui nei,
tēnei aku mihi māhana ki a koutou.
Nau mai, haere mai ra ki Te Whare Kawana o Tamaki Makaurau.
Distinguished guests, ladies and gentlemen, warm greetings to you all, and welcome to Government House Auckland.
David and I are very pleased to host Cystic Fibrosis New Zealand tonight and celebrate 50 years of valued support and advocacy for people living with cystic fibrosis.
In 1968 the outlook for children in New Zealand with this incurable disease was bleak, and there was little support for them or their families .
A volunteer support group was formed for parents with a newly diagnosed child, and it became a registered charity in December 1968.
Fifty years later, CFNZ remains dedicated to its original mission – to support and improve the quality of life for all people with cystic fibrosis and their families in New Zealand. It remains the only charity dedicated to this aim.
Receiving an initial diagnosis must be a bewildering experience for children and their families. I imagine that CFNZ’s support must be a lifeline at such times – and in the years that follow.
Families are no doubt deeply grateful for visits from fieldworkers and for the information CFNZ provides – not to mention its assistance with the cost of essential medical equipment, and support during organ transplants.
Given that there is still no cure for cystic fibrosis, the research undertaken in collaboration with Cure Kids is of vital interest to the 516 children and adults currently living with the condition in New Zealand, along with their families and whanau.
Looking ahead, CFNZ is working to secure easier access to the best medicines and treatment, and to identify day-to-day management of CF that is less demanding, less expensive and less time consuming.
I understand CFNZ is also lobbying for access to high-quality treatment that targets the cause, rather than the symptoms of the disease.
It’s all work that reflects the spirit of the whakatauki:
Hapaitia te ara tika pumau, ai te rangatiratanga mo nga uri whakatipu
Foster the pathway of knowledge - to strength, independence and growth for future generations.
And it’s work made possible through the generous support of CFNZ’s donors, corporate sponsors, charitable trusts and foundations.
Tonight we acknowledge the tireless efforts and commitment of everyone who has worked hard to improve the quality of life, and life expectancy, for people with CF over the last 50 years:
family, whanau, and friends;
clinicians; CFNZ members, volunteers, board and staff;
CF researchers, funders and supporters.
We thank you for your invaluable support. You have made a significant difference to the lives of our cystic fibrosis sufferers and their families.
I wish you all the very best for the future and Merry Christmas.
Kia ora huihui tātou katoa.