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Viewing 15 posts - 1 through 15 (of 35 total)
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  • February 2, 2015 at 1:00 pm in reply to: My story #524
    SKH
    Participant

    Dear Renu
    I am really sorry to hear this news. I would like to echo Pan’s comments and say that we are here for you.
    My very best wishes for you and your daughters.
    SKH

    January 27, 2015 at 11:34 am in reply to: Wishing Everyone A Happy New Year #521
    SKH
    Participant

    Good to hear of progress Pan. Keep up the good work.

    January 26, 2015 at 2:13 am in reply to: Wishing Everyone A Happy New Year #519
    SKH
    Participant

    Is there any new news about Pan? It would be good if there was any research news around for example?
    Thanks

    November 28, 2014 at 1:10 pm in reply to: Hi #512
    SKH
    Participant

    Hi Hannah
    Sorry to hear about this. It may not be as straightforward as you think in Devon – they are blocking us getting tested at the moment – they see it as opening a can of worms – and that’s just at the adult level. I’ve been trying to resolve this for two years. I hope you have more success but you will need to push them hard.

    November 7, 2014 at 12:42 pm in reply to: New Book – For The Love of George #505
    SKH
    Participant

    Well done for getting this out Pan.

    November 7, 2014 at 12:41 pm in reply to: New LFS leaflet #504
    SKH
    Participant

    That’s great – well done for putting that together Pan. Although I would say that the testing is not quite as simple as this – 2 years since I first saw a gp about the potential and still we are only marginally further forward. They still have not carried out the test as the geneticist is reluctant- says it can open a can of worms for all the extended family. It goes on.
    SKH

    November 7, 2014 at 12:34 pm in reply to: My story #503
    SKH
    Participant

    I will keep looking out for your posts Surinder and thinking of you. I share your feelings about future generations. SKH

    September 25, 2014 at 12:29 pm in reply to: My story #495
    SKH
    Participant

    Crossing fingers the anti biotics kick in and knock the pneumonia on the head Surinder.
    SKH

    September 23, 2014 at 5:58 pm in reply to: My story #493
    SKH
    Participant

    Hi Surinder
    I just wanted to say I am thinking of you. I read all your posts but I can’t add anything that would be helpful. So, just to say we are here.
    SKH

    September 23, 2014 at 5:56 pm in reply to: Just Diagnosed! #492
    SKH
    Participant

    Hi Patti and welcome! I know it’s a scary time but it sounds like your doctor will help you with your next steps.
    SKH

    June 3, 2014 at 12:28 pm in reply to: Hello world #465
    SKH
    Participant

    Hi there and welcome!

    May 28, 2014 at 12:52 am in reply to: We’re now a registered charity #464
    SKH
    Participant

    Well done Pan!
    That’s a great first step

    May 17, 2014 at 9:10 pm in reply to: Li Fraumeni research charities or foundations? #461
    SKH
    Participant

    I’ve tried but the forum doesn’t put your posts up for months which is hopeless. However I wonder if they would support your endeavours in the uk
    SKH

    May 16, 2014 at 9:40 pm in reply to: Li Fraumeni research charities or foundations? #459
    SKH
    Participant

    Pan have you talked to the LFS.org about your ideas?
    SKH

    May 5, 2014 at 8:23 pm in reply to: Li Fraumeni research charities or foundations? #452
    SKH
    Participant

    I would have thought the lfsassociation.org would be the best bet?

    SKH

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