Cystic Fibrosis Is Cruel

May is CF Awareness Month, and the start of a new campaign from Cystic Fibrosis NZ inspired by three, simple and powerful words: CRUEL NEEDS KIND.

Louise Bentley, Director from Energi Advertising says “From the briefing, we knew we needed a non-sugar-coated revealing and truthful approach to get to and cut to the core of how unfair CF is as a condition, and why we need to raise funds. It is a condition from birth for whole of life. Whole of life, for most is under 40.”

“Simultaneously, Cystic Fibrosis NZ is dealing with the unfair systemic problem of obtaining an effective treatment available in most countries around the world that improves the daily lives of those with CF, just not available in New Zealand” says Louise.

The unfairness from both the genetic nature of CF, and no treatment being available, led to the CruelNeedsKind campaign created as a colab by Energi X Andy Lish (Lishy) for Cystic Fibrosis NZ.

“Continuing the theme, we also sought deliberate acts of kindness from our industry partners, and “wow” did they ever deliver: Simon Mark-Brown of Republic Films, NZME & Mediaworks, Lumo Billboards and TVNZ to help bring the CF plight to life” says Louise.

Lishy is now father to FRED Bear, the new CF proxy for kindness. “What a thrilling ride this project has been. I have had a long and sometimes successful, often chequered career. I can say, in all truth that this has probably been THE MOST REWARDING campaign I ever wrote and worked upon as part of a fine team. I nearly didn’t, but I would not have missed it for the world. It is a masterclass of integrated marketing by Energi, with a tad of help from me” says Lishy.

The story captured the attention of a young singer songwriter whose star is ascending. Based in the UK Chloe Lorentzen felt compelled to create a song to encompass the cruelty at an intimacy level of parent and child. Age 17, Chloe created BREATHE, an anthem that will endure fad and fashion, it is a love song. Written in her bedroom, then produced at the Abbey Rd studios in London within five days. Chloe has gifted the global broadcast rights to CFNZ in perpetuity. Her deliberate act of kindness with BREATHE is available for all to download from Spotify or cruelneedskind.org.nz.

Lisa Burns, Chief Executive from Cystic Fibrosis NZ says, “Hands have stretched across the world with these incredible and selfless Deliberate Acts of Kindness, inspired by the cruel realities of cystic fibrosis and the courage of our CF community.”

It’s a cruel twist of fate that brings CF to newborn life. Two loving parents, who by ill luck carry the same CF gene. In New Zealand one person in 25 carries the cystic fibrosis gene, usually without knowing it.

When two people who carry the CF gene have a child together, there is a 25 percent chance that the baby will be born with cystic fibrosis. Of the more than 50,000 babies born in Aotearoa each year, all will undergo the heel prick test to determine if a CF gene is detected. Up to 10 of these new babies will be diagnosed with cystic fibrosis.

Families living with cystic fibrosis face an immense emotional, physical, and financial toll every single day. Kareena and Josh Sneddon parents of a two-year-old with cystic fibrosis say "CF is always first. It rules every decision, it affects everyone, siblings and even the wider family. It's constant mental strain; calculating and administering medication, appointments, ordering supplies and communicating with medical professionals. It's like a heightened sense of fight or flight, but it's always fight as you strive to keep her healthy. Birthdays are tainted with the grief that this progressive condition will only get worse, take more of a hold. You don't want them to grow up.”

For those with CF, their parents, carers, and families, managing CF means lung clearance, medication, nutrition, exercise, x-rays, tests, IV lines and protecting from infections is part of a lifelong journey. They must live every day with the expectation that they will face declining health, increasing complications, major medical interventions, and premature death.

Cystic Fibrosis NZ receives less than 4 percent government funding and relies on the generosity of New Zealanders to meet the ongoing needs of the CF community. They provide practical, emotional, and financial support that means families all over New Zealand can access vouchers and allowances for coffee or a meal during a hospital admission, a parking voucher to attend clinic, physical activity grants to support lung health, welfare assistance during hardship, medical equipment, assistance towards lung transplant costs, and when necessary, end of life support.

Cystic fibrosis is CRUEL, and it can be hard to hold on to hope and find the joy during difficult and often life-threatening times. KINDNESS can work wonders. During CF Awareness Month, Cystic Fibrosis NZ is seeking Deliberate Acts of Kindness to help bring fairness for CF families.

“May is an important month for all families living with cystic fibrosis. As the Government budget is announced and the applications for Trikafta are reviewed again, we need an ultimate Deliberate Act of Kindness from those who can change the lives of people living with cystic fibrosis in New Zealand”, says Lisa.

CF is a cruel condition. There is no cure. The wonder drug isn’t funded here in NZ. Until then an injection of kindness helps.

Deliberate Acts of Kindness Day is Friday the 27th of May 2022.

Visit cruelneedskind.org.nz

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