Stop the Clock

Stop the Clock imageIn June the CF Trust held a day of protests as part of its ongoing ‘Stop the Clock’ campaign, to ensure those with CF get access to life changing treatments on the NHS.

Around 40% of those with CF could be helped if a new precision medicine called Orkambi were made available to suffers on the NHS. Unfortunately its makers, the NHS and the Government can’t agree an affordable price. The medicine is a breakthrough for many with Cystic Fibrosis because it tackles the underlying cause (genetic defect), rather than just the symptoms. The deadlock continues..

 

Good Tech is Good News

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The advertising industry’s annual conference in London heard all about CF and how technology can be used for good. Microsoft’s Innovation Director, Haiyan Zhang, (the inventor of the Big Life Fix game for the Coxhead family from Cornwall) has been further developing the technology.

The project can now be scaled up and has potential to transform physio and change how kids are cared for by the NHS.

Haiyan fronted the presentation to ad execs at London’s Lyric theatre, inviting mum Vicky Coxhead to join her on stage and share her experiences.

You can watch the presentation on listen again here

A Song for tomorrow

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If you find yourself with some spare time ‘a song for tomorrow’ is Alice Peterson’s new book inspired by the late Alice Martineau. A talented singer/songwriter Martineau, who suffered from CF, was signed to the Sony Music label where she recorded her debut album before her death in 2003. Described as bitter sweet, the book has launched to some rave reviews as a result of its powerful yet poignant storytelling.

The book is available via this link