Sweatember 2024: More Than Just A Fitness Challenge Making A Real Difference For Those With Cystic Fibrosis

As we enter Sweatember, a pivotal month for raising awareness and support for those living with cystic fibrosis (CF), it's crucial to recognise the evolving landscape of this lifelong genetic condition. While groundbreaking CFTR modulators have transformed the lives of many, the reality remains that cystic fibrosis is far from cured. The need for continued support, especially through initiatives like Sweatember, has never been more pressing.

Recent data presented at the Australasian CF Conference in August 2024 highlighted a significant shift – real-world data has now surpassed clinical data in shaping our understanding of cystic fibrosis. This shift emphasises the ongoing challenges faced by individuals with CF and the importance of holistic support, particularly through physical exercise.

“While it’s an exciting and promising time in the history of CF, there’s still so much we don’t know about what the next ten years will bring,” says Lisa Burns, CFNZ Chief Executive. “Maintaining our programmes like Breath4CF, which provide practical support, is critical to ensuring people with CF continue to stay active while also receiving the care they need.”

The Breath4CF programme plays a vital role in this context by encouraging individuals with CF to lead more active lives. Whether it’s hitting the gym, setting daily walking goals, or engaging in gentler pursuits like yoga to enhance mindfulness and overall wellbeing, the programme motivates people with CF to stay active and connected to their communities. CF physiotherapists and clinical teams strongly recommend exercise as an integral part of CF care.

“To eliminate financial barriers for individuals with CF and their families, CFNZ provides the Breath4CF grant each year, which supports the integration of exercise and physical activity into their daily lives,” says Lisa. “This programme is available from birth and throughout life, encouraging exercise at all ages.”

Examples of what the Breath4CF fund covers include team or individual sports, equipment, horse riding, lessons, swimming lessons, trampolines, gym memberships, bikes, golf gear, yoga, and pilates classes. Many young people with CF are actively involved in sports, with several excelling in multiple disciplines and receiving recognition through CFNZ’s CF Achievers’ Award Programme.

The Breath4CF programme, which cost $90,000 in the financial year ending June 2024, is a vital resource for the CF community. With 75%¹ of individuals with CF relying on this programme annually, it’s clear that such initiatives are indispensable. These programmes help bridge the gap for those who, despite being eligible for CFTR modulators, cannot access them due to various barriers.

Lincoln, a five year old living with CF, and Leader of Sweatember’s Team Fun says that “having CF means my body works differently from people who don’t have CF. It means I take lots of medication and have to look after my body to keep it healthy.”

Joelle, Lincoln’s mum says “We have a really active wee lad. This year he picked up tap dancing lessons again and had his first season of Ripper Rugby. The Breath4CF grant meant we could say ‘yes’ to both activities and get him tap shoes and rugby boots. Saying ‘yes’ to activities that puts a huge smile on his face and also keeps him fit and healthy is really a powerful tool for us as parents”

As the global CF population changes in unexpected ways, one constant remains – the importance of exercise as a key component of treatment. “People with CF defy the odds every day. Even when they’re exhausted and don’t feel like exercising, they know it’s important for their health,” Lisa adds.

Sweatember is more than just a fitness challenge; it’s about making a tangible difference in the lives of those affected by cystic fibrosis. Participants are encouraged to take on a physical or wellbeing challenge of their choice, whether it’s running, cycling, yoga, or more, all while fundraising to support CFNZ’s vital programmes.

This year, CFNZ is also introducing five unique teams that participants can join:

• Team Jump: Led by Olympic trampolining medalist Dylan Schmidt and Olympian Maddie Davidson, this team is perfect for those who love to bounce and compete.
• Team Wellness: Led by the wise and wonderful Dr Steph Taylor; master of the hand-stand will be exercising as a wellness tool.
• Team Fun: Headed by 5-year-old CF'er Lincoln Dunlop, Team Fun is all about enjoying any activity that makes you break a sweat, whether it's biking, running, or trampolining.
• Team Run: Join marathon runner and CFNZ supporter Barnaby Luff in this team, ideal for those who love to hit the pavement and challenge themselves.
• Team Your Way: Led by CF'er and CFNZ team member Lizzie McKay, this team is for anyone who wants to do things a little differently – whether it’s walking your pet daily or taking on an ocean swim challenge.

Claire Schofield, an adult with CF who is an inspiration to many in the CF community, and someone whose resilience knows no bounds says, "Exercise is a huge part of my life, and what my husband and I call "mountain therapy" is essential for both my physical and mental wellbeing. When I don't get out in the hills, I notice my health starting to suffer. Given that my job is often physically demanding—a job I am deeply passionate about—I need to maintain a certain level of fitness, especially during the summer when fieldwork becomes a major focus. I also love seeing my dog happy, exploring beautiful places, and gaining a fresh perspective from the heights. It's about staying as well as I can for as long as I can, and maybe one day there will be a miracle like Trikafta for me."

Claire has been able to make use of her Breath4CF grant each year. “Last year I got a paddleboard which has been lots of fun over the summer, paddled down a few rivers so far, and it's something I wouldn't have been able to invest in without the grant.”

CFNZ invites Kiwis to fundraise, donate, or start a team to participate in Sweatember. “If people with CF can overcome the unique challenges they live with each day, then we hope they can inspire others to sweat it for CF this September,” Lisa Burns concludes.

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¹CFNZ survey data of the New Zealand CF community, April 2023

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