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Today marks not only the welcome end of an INCREDIBLY warm week, it’s also the fourth annual CF Trust Wear Yellow Day which is your chance to get involved and support a great cause by posting your ‘yelfie’. Wear something yellow, share a selfie using #cfyelfie on Twitter, Facebook or Instagram and then challenge your friends and family to do the same.
If you are able to make a donation then please text Yellow to 70500 to donate £5 or visit the website for other amounts / other ways to help. I’ll be sharing my #cfyelfie on my social media channels and making a donation this afternoon, and I’d love it if you could too.
This year, Wear Yellow Day is part of a wider CF Awareness Week which will culminate in nationwide protest action calling for access to the frankly life changing drug Orkambi for Cystic Fibrosis patients in the UK.
Whilst it is licensed for use here, it has been rejected by NICE for use by the NHS due to ‘cost effectiveness’. This is despite the committee recognising that the drug not only improves quality of life, but also significantly reduces reliance on NHS resources by lowering instances of the ‘acute worsening of symptoms’ that need hospitalisation by 69%, and those needing IV antibiotics by 56%. You can read more here about the individual impact of Orkambi from someone who has actually taken the drug.
People with CF are not actually able to attend the protests, due to the risk of cross infection, so they are entirely reliant on friends, partners, family and allies to show up and advocate for them in person. Whilst the CF Trust is arranging a day of online action to run alongside the protests for people with CF to make their voices heard using the hashtag #OrkambiNow, those who can be there at Stormont, Holyrood, Downing Street and the Welsh Assembely are so needed.
Somehow, KNOWING that there is medication out there that will both improve and prolong my partner’s life is almost worse than there not being one all – and there isn’t much I wouldn’t do in order to make sure he gets it.
I did write a little bit about what Cystic Fibrosis is and why it matters to me last year for Wear Yellow Day 2016, but perhaps due to the nature of CF and the fact that people living with the condition cannot be in the same room together, there is already too much centering of people who do not have CF within the community and I’m hyper aware that I do not want to add to that any more than I already have. Instead, here’s a short video explaining what exactly the condition is:
I’m really proud to be able to get involved with Wear Yellow Day, CF Awareness Week and the coming #OrkambiNow protest action. I will happily donate my £5 and post my yelfie! The CF Trust is ultimately trying to raise funds for research into finding a cure for CF, and it feels like one is ever closer, as they put it:
“We believe that the day when people with CF can live a life unlimited by their condition is within our reach.”
So, having said all that, I’d love it if you could join in and post your #cfyelfie to your social media channels this year, then donate £5 (or whatever you can afford) and challenge your friends and family to do the same!
How to donate: Text Yellow to 70500 to donate £5 to the CF Trust, to help find a cure and to give people with Cystic Fibrosis a fighting chance.