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Thread: Lifesaving support from all TZers - please help

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  1. #1
    Master
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    Lifesaving support from all TZers - please help

    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.


    Sent from my iPhone using Tapatalk
    Last edited by Cat7; 10th March 2019 at 16:40. Reason: Corrected the Daily Express link

  2. #2
    Master
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    Done.

  3. #3
    Done.

  4. #4
    Master Mr Curta's Avatar
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    Signed and shared. It's so important that medication should be available to all. Your family are in our thoughts.
    M

  5. #5
    Master
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    Daily bump, please add your signature for support. Thank you.
    And a massive thanks to all those who have signed so far and for all your comments, you don't know what it means to all those who are suffering with CF living on borrowed time and who don't really have a voice. 31 is no age at all, assuming they make it that far, many many don't.

  6. #6
    Master
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    Signed and will share on FB. It’s a cruel disease. Best wishes to you and your daughter.

  7. #7
    Craftsman
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    Signed

  8. #8
    Done


    Sent from my iPad using Tapatalk

  9. #9
    Craftsman
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    Done and also shared on FB. Best wishes to both of you.

  10. #10
    Grand Master Saint-Just's Avatar
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    Don't take my silence for agreement. I've just realised you're too stupid to argue with.

  11. #11
    Petition signed from me. Best wishes to you all.


    Sent from my iPhone using Tapatalk

  12. #12
    Grand Master Griswold's Avatar
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    Signed and posted on another forum I'm a member of.

    My best wishes for your daughter that she receives the treatment she so desperately needs.
    Best Regards - Peter

    I hate being bipolar, its brilliant.

  13. #13
    Master MakeColdplayHistory's Avatar
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    Signed and shared.
    My best mate in primary school had CF at a time when there were no effective treatments. It seems so wrong now that there are treatments but people are denied them.

  14. #14

  15. #15
    Master
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    Done - and very best wishes to Maisie.

  16. #16
    Craftsman
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    Done.

  17. #17
    Grand Master
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    Done. Best wishes to all of you.

  18. #18
    Master
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    Fantastic start thank you all so much, and brilliant idea about putting up on Facebook.
    I'm no social media expert but yes please post it everywhere to be seen.

  19. #19
    I am not allowed to sign (not a UK resident etc). But -from one parent to the other- you have my fullest sympathy!

    Menno

  20. #20
    Journeyman
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    Done.

    Hope it goes somewhere.

  21. #21
    Master DMC102's Avatar
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    Signed, with best wishes.

  22. #22
    Craftsman
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    One more

  23. #23
    Journeyman
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    Signed, and my best wishes

  24. #24
    Master raptor's Avatar
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    Only for uk residents

  25. #25
    Craftsman
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    Done and circulated to my friends and family.

  26. #26
    Master
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    Done and my best wishes to you all.

    I can only sympathise with how frustrating it must be for finances to be the obstacle to access to live saving/improving drugs. Certainly puts watch collecting into perspective.

  27. #27
    Master
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    Signed. My nest wishes to you all.

  28. #28
    Master
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    Done. Hope it goes somewhere and good luck and best wishes to you and all your family.

  29. #29
    Master
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    Done, best wishes to you, your daughter and all who suffer from this awful condition.

  30. #30
    Craftsman
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    Done.
    Best of luck.

    Alex

  31. #31
    Master .olli.'s Avatar
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    Signed, very best wishes to you and Maisie

  32. #32
    Master
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    Done.

    All the best.

  33. #33
    Grand Master Dave E's Avatar
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    Done.
    Dave E

    Skating away on the thin ice of a new day

  34. #34
    Master
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    Thank you so much everyone for your support and kind comments.
    Please keep up the support TZ with more signatures and keep spreading the word.
    I will update the thread after the Vertex meeting today. Have a good sunny Monday everyone.

  35. #35
    Craftsman Robti's Avatar
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    signed and all the best

  36. #36
    Done


    Sent from my iPhone using Tapatalk

  37. #37
    Master
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    Done.

  38. #38
    Craftsman
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    Done, hope it proves successful

  39. #39
    Master Sharky's Avatar
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    Signed

    Mark

  40. #40
    Master
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    Done Paul, you’d never mentioned it in our varied discussions. All the best to you all.

    Matt


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  41. #41
    Grand Master Dave+63's Avatar
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    Done and shared.

    Good luck.

  42. #42
    Master mrwozza70's Avatar
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    Best of luck... I'll share with F&F

  43. #43
    Master Wolfie's Avatar
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    Best of luck…. Signed

  44. #44
    Done
    Best wishes

  45. #45
    Master wileeeeeey's Avatar
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    Signed. Best of luck.

  46. #46
    Grand Master magirus's Avatar
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    Done.

  47. #47
    Master
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    Signed.

  48. #48
    Master
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    Sorted.

  49. #49
    Master
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    Signed here too. Fingers crossed

  50. #50
    Master
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    Thank you all so much for the support and kind comments so far, it means the world.
    It is a terrible disease like they all are. CF sufferers cannot meet up because of the risk of cross infection, they have to stay apart. It has massive psychological effects with the medication issues such as Orkambi as well as the physical breakdown of the lungs and other internal organs. One day Maisie can seem fine and within hours is struck down requiring urgent hospitalisation for a minimum of two weeks, assuming a bed is available.
    She has been a prolific fund raiser for the charity with two skydives, work events and organising funs runs, but the last year has really taken its toll bless her. She is an extremely strong person who likes to be treated as any other young lady her age, so rarely lets on and we respect that, she was working up until last June.
    Thank you all, lets keep it going please feel free to post the petition link wherever it can be signed. And yes sorry I should have said it is a UK only petition, only because Orkambi is not available in the UK, no other reason, so thanks to those outside the UK who have tried to sign.

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