About 25 local runners are taking part in the month long "Sweatember" to raise funds for Cystic Fibrosis NZ.
Cystic fibrosis (CF) is a serious genetic disease that affects the lungs, gut and other organs. It causes thick, sticky mucus to build up, leading to severe breathing problems, infections and poor nutrient absorption.
No cure exists, but early diagnosis, ongoing treatment and access to specialised drugs can greatly improve quality and lifespan.
The team was inspired to take part because they are friends of Maddie and Mackenzie Palmer, whose 1-year-old daughter, Maya, was diagnosed with cystic fibrosis before birth.
Mrs Palmer said Maya had an ileostomy at birth, which creates a stoma in the abdomen.
"She is in the 10% of people with CF that have bowel issues as well."
The stoma was reversed once the bowel had time to heal, but Maya continued to need twice-daily physiotherapy and multiple medications, which means she cannot attend daycare and must isolate carefully at home.
While there is no cure, a drug called Trikafta could add benefits equivalent to up to 27 more years of more healthy life.
"It is not a cure, there is no cure to cystic fibrosis, but it is also the quality of life."
In 2023 the drug was approved by Pharmac to be funded in New Zealand for children aged 6 and over.
Without funding, the drug can cost more than $300,000 a year.
Pharmac is assessing whether to fund Trikafta for younger children, but in the meantime the family plans to move to Australia next year because it is funded there from age 2.
Despite the challenges at such a young age, Maya has a positive personality and is a "little princess" who loves attention, Mrs Palmer said.
"She is a wee wild child, she is sassy, she demands a room.
"She is very captivating, people just love her."
The fundraiser was not just about Maya.
"It is just about getting out there and sweating as much as you can and while you are sweating sharing information about cystic fibrosis, sharing the Givealittle page raising money for the charity and just building awareness,” Mrs Palmer said.
Wilson Driver is Maya’s godfather and has been leading by example ahead of "Sweatember".
He decided to begin training early before September.
"I ran the first three days of August and then I'm like, actually, I'm gonna run every day in August."
He racked up 300km during August and shared his progress on social media while pointing people to a fundraising page that has already raised $3000.
Many in the 25-strong team plan to take part in the Emerson’s Dunedin Marathon to raise awareness and funds for Cystic Fibrosis NZ.
"It is a good lead-up to training for the marathon," he said.
—Visit givealittle.co.nz and search for Sweat for CF to give.
