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Thread: MND Register

  1. #11
    Forum Member nunhead_man's Avatar
    Join Date
    Jul 2017
    I have signed up too - but I am with you Ellie - I would have thought that the MND centres ought to be asked who the people are

    After all, they were paid for in some part or other by the ice bucket challenge and I am sure they would know most of the folk with MND based on my experience of that is where I ended up once the various medical professionals I had contact with had some idea what I had.

    I guess there will be some sort of data protection issue about lifting the names wholesale, but the centres could at least ask people for permission to forward their details?'


    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

    "Things turn out the best for people who make the best of the way things turn out"

  2. #12
    Forum Member
    Join Date
    Oct 2018
    Trafford, Gtr Manchester
    Just a reminder - Please register if you can

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