I will be joining the protest in London (read more
here) to campaign for the rightful access to the life changing drug Orkambi for the 40% of CF sufferers that this drug will be suitable for; the first that any of them will have taken that treats the underlying cause of cystic fibrosis rather than just the symptoms. This drug, a so called precision drug,
can have a huge impact on quality of life by reducing the amount of time spent in hospital and slowing the decline in lung function experienced by people with CF.
Sadly this is not a drug which will benefit Isaac (due to his class of mutation, which you can read more about here) but this fight is no less personal to me.
CF friends, as it stands, I am going alone to Whitehall, so if anyone is in the same boat and wants to meet up, please PM me through FB. I'd love some company!
Have a great day all. You can read more about Orkambi
here x