$80K Boost From NZCT Helps Cystic Fibrosis Community Breathe Easier
New Zealand Community Trust (NZCT) has awarded Cystic Fibrosis NZ (CFNZ) an $80,000 grant towards the Breath 4 CF programme — a vital physical activity initiative that helps people with cystic fibrosis stay active and live well.
CFNZ Chief Executive Lisa Burns says, 'Thanks to this generous funding from NZCT, we'll be able to continue delivering high-quality support that makes physical activity possible for hundreds of people with CF, right from birth.'
Breath 4 CF removes financial barriers for individuals and whānau by covering costs for personalised activities that keep lungs strong and minds healthy — from surf lessons and gym memberships to dancing, drumming, or trampolining. For those with CF, exercise isn't optional — it's essential for managing symptoms, reducing infections, and improving long-term outcomes.
The CF community highly values the programme. Nearly 400 applications were approved last year alone, with over $88,000 distributed to help people stay active in ways that suit their interests and needs.
Ben Prince-Saxon, a 24-year-old adult living with cystic fibrosis is on a mission named '12 in 12' which will see him run twelve marathons over the course of a year to raise awareness and funds for kiwis living with CF. Ben says, ' The Breath 4 CF grant has been used every year to pay for football fees, new boots, and now running shoes to keep me injury-free'.
Charley Cameron, a 14-year-old student, hip hop dancer, and member of world champion crew NOVA adds 'Living with CF has presented a lot of challenges, but it has never stopped me from pursuing my passions. Dancing has been a source of strength and resilience throughout my journey with CF and keeps me fit.'
Joelle Dunlop, mother of 6-year-old Lincoln with CF says 'The Breath 4 CF grant gives Lincoln the opportunity to participate in hip hop classes (he's a brilliant dancer) and plays rugby. He can't wait to get on the field on Saturdays! The grant will not only help cover the costs of raising a medically high needs child but also encourage and empower us as parents to emphasise the importance of the most accessible form of lung function treatment - exercise.'
NZCT's GM of Grants, Marketing and Communications, Ben Hodges says, 'We're delighted to be able to help CFNZ ensure people living with CF don't face any financial barriers to participation in the holistic benefits of sport and active recreation. Having supported the programme with $80k last year as well, the stories coming out of Breath 4 CF are really inspiring. Our support wouldn't be possible without the responsible gaming fundraising partnerships we share with our local venues nationwide.'
Notes:
Cystic Fibrosis NZ (CFNZ) was founded in 1968 to deliver a range of vital services in order to extend and improve the lives of those living with CF. They support many of the more than six hundred people and their families affected by cystic fibrosis in New Zealand, working with people from diagnosis to change the trajectory of their lives.
New Zealand Community Trust (NZCT) is one of the largest gaming societies in New Zealand. In 23/24, NZCT awarded over $40 million in grants for a wide range of community services, including sports, rescue services, youth development, the Arts, and cultural activities.
More on NZCT's grants programme, harm prevention approach, and partnership with hospitality venues throughout New Zealand: https://www.nzct.org.nz/about-us/
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6 days ago
- Scoop
$80K Boost From NZCT Helps Cystic Fibrosis Community Breathe Easier
Press Release – NZ Community Trust Breath 4 CF removes financial barriers for individuals and whnau by covering costs for personalised activities that keep lungs strong and minds healthy from surf lessons and gym memberships to dancing, drumming, or trampolining. New Zealand Community Trust (NZCT) has awarded Cystic Fibrosis NZ (CFNZ) an $80,000 grant towards the Breath 4 CF programme — a vital physical activity initiative that helps people with cystic fibrosis stay active and live well. CFNZ Chief Executive Lisa Burns says, 'Thanks to this generous funding from NZCT, we'll be able to continue delivering high-quality support that makes physical activity possible for hundreds of people with CF, right from birth.' Breath 4 CF removes financial barriers for individuals and whānau by covering costs for personalised activities that keep lungs strong and minds healthy — from surf lessons and gym memberships to dancing, drumming, or trampolining. For those with CF, exercise isn't optional — it's essential for managing symptoms, reducing infections, and improving long-term outcomes. The CF community highly values the programme. Nearly 400 applications were approved last year alone, with over $88,000 distributed to help people stay active in ways that suit their interests and needs. Ben Prince-Saxon, a 24-year-old adult living with cystic fibrosis is on a mission named '12 in 12' which will see him run twelve marathons over the course of a year to raise awareness and funds for kiwis living with CF. Ben says, ' The Breath 4 CF grant has been used every year to pay for football fees, new boots, and now running shoes to keep me injury-free'. Charley Cameron, a 14-year-old student, hip hop dancer, and member of world champion crew NOVA adds 'Living with CF has presented a lot of challenges, but it has never stopped me from pursuing my passions. Dancing has been a source of strength and resilience throughout my journey with CF and keeps me fit.' Joelle Dunlop, mother of 6-year-old Lincoln with CF says 'The Breath 4 CF grant gives Lincoln the opportunity to participate in hip hop classes (he's a brilliant dancer) and plays rugby. He can't wait to get on the field on Saturdays! The grant will not only help cover the costs of raising a medically high needs child but also encourage and empower us as parents to emphasise the importance of the most accessible form of lung function treatment – exercise.' NZCT's GM of Grants, Marketing and Communications, Ben Hodges says, 'We're delighted to be able to help CFNZ ensure people living with CF don't face any financial barriers to participation in the holistic benefits of sport and active recreation. Having supported the programme with $80k last year as well, the stories coming out of Breath 4 CF are really inspiring. Our support wouldn't be possible without the responsible gaming fundraising partnerships we share with our local venues nationwide.' Notes: Cystic Fibrosis NZ (CFNZ) was founded in 1968 to deliver a range of vital services in order to extend and improve the lives of those living with CF. They support many of the more than six hundred people and their families affected by cystic fibrosis in New Zealand, working with people from diagnosis to change the trajectory of their lives. New Zealand Community Trust (NZCT) is one of the largest gaming societies in New Zealand. In 23/24, NZCT awarded over $40 million in grants for a wide range of community services, including sports, rescue services, youth development, the Arts, and cultural activities.
Scoop
6 days ago
- Scoop
$80K Boost From NZCT Helps Cystic Fibrosis Community Breathe Easier
New Zealand Community Trust (NZCT) has awarded Cystic Fibrosis NZ (CFNZ) an $80,000 grant towards the Breath 4 CF programme — a vital physical activity initiative that helps people with cystic fibrosis stay active and live well. CFNZ Chief Executive Lisa Burns says, 'Thanks to this generous funding from NZCT, we'll be able to continue delivering high-quality support that makes physical activity possible for hundreds of people with CF, right from birth.' Breath 4 CF removes financial barriers for individuals and whānau by covering costs for personalised activities that keep lungs strong and minds healthy — from surf lessons and gym memberships to dancing, drumming, or trampolining. For those with CF, exercise isn't optional — it's essential for managing symptoms, reducing infections, and improving long-term outcomes. The CF community highly values the programme. Nearly 400 applications were approved last year alone, with over $88,000 distributed to help people stay active in ways that suit their interests and needs. Ben Prince-Saxon, a 24-year-old adult living with cystic fibrosis is on a mission named '12 in 12' which will see him run twelve marathons over the course of a year to raise awareness and funds for kiwis living with CF. Ben says, ' The Breath 4 CF grant has been used every year to pay for football fees, new boots, and now running shoes to keep me injury-free'. Charley Cameron, a 14-year-old student, hip hop dancer, and member of world champion crew NOVA adds 'Living with CF has presented a lot of challenges, but it has never stopped me from pursuing my passions. Dancing has been a source of strength and resilience throughout my journey with CF and keeps me fit.' Joelle Dunlop, mother of 6-year-old Lincoln with CF says 'The Breath 4 CF grant gives Lincoln the opportunity to participate in hip hop classes (he's a brilliant dancer) and plays rugby. He can't wait to get on the field on Saturdays! The grant will not only help cover the costs of raising a medically high needs child but also encourage and empower us as parents to emphasise the importance of the most accessible form of lung function treatment - exercise.' NZCT's GM of Grants, Marketing and Communications, Ben Hodges says, 'We're delighted to be able to help CFNZ ensure people living with CF don't face any financial barriers to participation in the holistic benefits of sport and active recreation. Having supported the programme with $80k last year as well, the stories coming out of Breath 4 CF are really inspiring. Our support wouldn't be possible without the responsible gaming fundraising partnerships we share with our local venues nationwide.' Notes: Cystic Fibrosis NZ (CFNZ) was founded in 1968 to deliver a range of vital services in order to extend and improve the lives of those living with CF. They support many of the more than six hundred people and their families affected by cystic fibrosis in New Zealand, working with people from diagnosis to change the trajectory of their lives. New Zealand Community Trust (NZCT) is one of the largest gaming societies in New Zealand. In 23/24, NZCT awarded over $40 million in grants for a wide range of community services, including sports, rescue services, youth development, the Arts, and cultural activities. More on NZCT's grants programme, harm prevention approach, and partnership with hospitality venues throughout New Zealand:
NZ Herald
02-05-2025
- NZ Herald
On The Up: 24-year-old Aucklander with cystic fibrosis running 12 marathons in 12 months to raise $25k
'In the later teen years is when I felt it the most, just basic day-to-day life, things getting a bit tricky,' Prince-Saxon explains. 'Less energy, no longer keeping up with my mates on the football pitch and just a lot of coughing.' Those symptoms led him to experience 'a lot of social anxiety' as well, he says. 'I [didn't have] a lot of confidence meeting new people.' Two years ago, Prince-Saxon started taking Trikafta, which was first funded for cystic fibrosis patients in New Zealand in April 2023. 'It changed everything,' he says. 'I started it on a Friday and then over the weekend, it was just my body clearing out all the mucus that was built up in my lungs that wasn't able to be cleared. 'Since then, it's been easier to gain weight, I'm coughing a lot less – before Trikafta, I would have been coughing maybe like every five to six words in a sentence, but now I'm barely coughing at all.' While his lung function hasn't improved to the level he would like, he can now breathe properly through his nose, unlike before. 'I just have a lot more energy to run, to do everything in life that a 'normal person' would be able to do,' he says. It hasn't just given him relief from his symptoms, but a future to look forward to. 'Pre-Trikafta, my life expectancy was about mid-thirties, more or less,' he says. 'Trikafta is estimated to give people with CF an extra 27-plus years of life on top of their mid-30s, which is incredible. 'My outlook on life has definitely changed a lot, just kind of knowing that there's roughly double the amount of time I thought I was going to be here for.' Prince-Saxon started running in January 2023 before starting the drug, in the hope it would help his body to benefit from the treatment. In the years since then, running has come to mean a lot more to the 24-year-old. Advertise with NZME. 'It's one thing I've just really wanted to push myself into, not having been able to run like I can now before Trikafta, and just wanting to push the limits of the new life that I've been given.' Now, he's using it as a way to give back. Last year, he ran three half-marathons and three full marathons, and as he approached his final run in October, he decided to take on a new challenge in 2025 to fundraise for Cystic Fibrosis New Zealand. 'Somehow, 12 marathons in 12 months clicked, and then that's the idea I ran with straight away.' He's since completed four marathons and raised $5,300 through a Givealittle page. 'So far, so good,' he says. 'The reception from all my friends and family was pretty cool and fundraising took off pretty well. In the past two months, it's slowed down a little bit ... [that's] the tricky part in trying to learn what to do differently.' Four marathons into his challenge, he says he's physically coping so far. 'I did the fourth one at the beginning of this month [April] and that was tough. That was definitely the toughest marathon yet, because I ended up doing about three in six weeks from February to April.' Asked how it feels to see how many people have donated to his Givealittle page so far, Prince-Saxon says: 'It means just about the world.' 'Cystic Fibrosis New Zealand [CFNZ] is a charity that gives back to the CF community, so my 'why' for choosing them is they have helped me since I was diagnosed, and my family, with positive things like sports gear and whatnot. 'All the money fundraised goes to CFNZ and then essentially goes back to the community and events to help generate further awareness for CF and help other kids and families and adults with CF throughout New Zealand.' What is cystic fibrosis? Cystic fibrosis is a life-threatening genetic condition that causes the lungs and digestive system to be blocked with thick mucus, which can cause chronic coughing, infections or weight problems. The severity will vary from person to person; some will have fewer symptoms than others. In New Zealand, most people are screened for CF as babies. There is no cure, though there are treatments available. The average life expectancy for people with CF is believed by specialists to be in the mid to late 30s, according to Cystic Fibrosis New Zealand. The drug Trikafta, which has been hailed as life-changing, was funded by Pharmac in 2023 for Kiwis with CF aged 6 and over who meet certain criteria.
