Supporting Cystic Fibrosis
Cystic fibrosis is a genetic disorder that affects most critically the lungs, and also the pancreas, liver, and intestine. It is a disease that has affected me greatly with several of my close friends having CF, which has a huge impact on their lives.
That is why when I was asked to help raise funds to support CF I couldn’t say yes any quicker.
There is no cure for Cystic Fibrosis, most with the disease won’t make it past the age of 40 and it is only with lung transplants that others are given hope – but for some with the disease, there is a new hope; the drug Kalydeco.
Kalydeco (Ivacaftor) is the first drug that treats the underlying cause of Cystic Fibrosis – rather than the symptoms of the disease.
Kalydeco isn’t the saviour for every patient with Cystic Fibrosis, but for 5-10% of the people with the disease – it is.
Though this drug will save and extend lives, that comes at a cost; $300,000 Per Year of taking the drug. Considering most patients who need Kalydeco will require it for the rest of their lives, that cost is out of the reach of almost all.
That is where we come in, we can all help.
My good friend Amanda has Cystic Fibrosis, she has had a double lung transplant and by her own admission doesn’t think her body could take another. She doesn’t want this same situation for others, so she is raising funds, promoting the need for Kalydeco as a financially viable option and saving lives.
Part of this mission will take place at the Kokoda Trail, where Amanda and a small group of supporters will trek over 8 days through harsh forest, mountains and difficult climate all in the hope of raising awareness for Kalydeco, and Cystic Fibrosis sufferers.
I will be joining Amanda in this journey, and with an aim of $300,000 in donations over the next 12 months, you can too.
More information will come in the following months with how you can help, and I look forward to this incredible journey with an amazing and inspirational friend.