Hello all TZers.
Can I please ask for a few minutes of your time. No parent should ever have to consider the strong possibility of outliving one of their children but I know like me, some others on TZ have to. So I am calling out to the many many decent folk here for support please.
Eddie has very kindly agreed for me post this up.
My eldest daughter Maisie has Cystic Fibrosis, predominantly an awful degenerative lung disease and has had the worst 12 months spending 4 months in Hospital including Christmas and New Year for intensive CF treatment. She is currently very poorly again.
Along with 10,400 other CF sufferers in the UK we really need your support please to sign a petition calling for life saving drugs to be made available for our Cystic Fibrosis sufferers who currently have an average life expectancy of just 31 years if they are fortunate.
This is the link to the online petition
https://petition.parliament.uk/petitions/231602
There is absolutely no further commitment required, literally just your signature to support the online petition calling for these life saving drugs to be made available but if you could share the petition with some of your friends and family for more signatures that would be fantastic.
We need to get the petition to over 100,000 in order for the Government to allow MPs to raise this scandal in Parliament. It's currently sat at just over 74,000.
Please help support my daughter and the other 10,400 CF sufferers in the UK, they so need this opportunity for a lifeline. Thank you very much for your time and hopefully your support. In the three years that Orkambi has been available 231 CF sufferers in U.K. have died when this treatment should have been available, please help to put an end to this.
As a supporter of the Cystic Fibrosis Trust I attended a friendly demonstration in Parliament Square last Thursday to lobby for a deal to be done between Government, NHS / NICE and an American pharmaceutical company called Vertex who have developed 3 "super drugs" for the effective treatment of CF, the most significant one being Orkambi. This is the biggest CF medical breakthrough for years and the only light that many sufferers including my daughter have. Please please sign the petition in the link above to support making Orkambi available to all sufferers in the UK in line with many other countries.
For further info this Daily Express article in the link below covers the demo that I attended under the statue of Churchill. The Express in particular has been instrumental in spearheading the Orkambi campaign.
There is a crucial meeting with Health Secretary Matt Hancock and Dr Jeffrey Leiden of Vertex tomorrow.
https://www.google.co.uk/amp/s/www.e...ock-vertex/amp
Thank you if you have read this far, now please sign the petition.
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