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How Cystic Fibrosis Western Australia experienced growth through artistry

Nigel Barker,CEO of Cystic Fibrosis Western Australia, talks about how a simple act of creativity led to increased awareness, funding and growth for his organization.

Looking back, it’s easy to see that life is punctuated by special moments; some happy, some sad.

And there are moments that have profound on-going effects that far outweigh the moment itself, like the butterfly effect.

Several years ago, Cystic Fibrosis Western Australia was selected winner of a CTK Foundation poetry competition and artist Bionik used our poem as inspiration to write a song that was the catalyst for our “butterfly effect”.

We set Bionik’s wonderful, heartfelt song to a video and used it to grow our presence, raise awareness and set us on a new trajectory, one filled with hope and enthusiasm for children and young adults living with cystic fibrosis (CF).

A poem for Joel

Our poem was based on a young boy called Joel who lived with CF. He came into my office just before Christmas one year and I asked him “what would you like from Santa?”

He smiled and said simply “a day off please!”

I remembered Joel’s wish as we sat down to write our poem and I recalled longing to be able to give him his day off from the grueling treatment that he had endured every day of his short life.

Our poem is called ‘One Day’ and it’s the best Christmas present that Joel and many young people living with CF could ever have.

One Day

Pounding purging, coughing, splurging
Rubbing, hitting, gasping, spitting,
Breathless breathing
Constant yearning.
One day off is all I need,
One day’s living free of care,
One day as a normal child
A chance to steal some cool, clear air.

Our ‘butterfly’ forged a stronger team here in Western Australia. It brought us together in ways we could not have imagined. It raised awareness, brought in funds and gave us the confidence and a belief in ourselves to raise millions of dollars for cystic fibrosis research. I recommend you give it a go.

Even if you don’t win, the experience of working together may very well turn out to be your very own Butterfly! If you do, hold on tight for the storm that follows!

—Nigel Barker

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Cystic Fibrosis Western Australia