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Thread: London based research opportunity

  1. #21
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Yes, we do get to 'meet' each other, which is nice- there were only 6 of us. I'll brush my unruly primate hair for you
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  2. #22
    Forum Administrator hayley J's Avatar
    Join Date
    Aug 2017
    Hi all,

    The research team have heard back from Amber at UCL regarding the problems with the link being sent out:

    "We were keen to try a new method to engage with plwMND without the need for travelling. As with all new technology, unfortunately there were a number of technical issues that we hadn’t anticipated! We have learnt from these and hopefully, it will be smoother next time. We are really encouraged by the interest in this method and are looking at ways to develop it further.

    We want to apologise to those people who wanted to take part but who were unable to this time. We have gotten lots of great feedback on the panel and the research developments so far. We are looking forward to future panels! "

    We will let you know if any the panels are planned in the future, hopefully with more notice than a week before the event


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