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Thread: Als tdi webinar 14 may 2019

  1. #1
    Forum Member Ellie's Avatar
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    Als tdi webinar 14 may 2019

    This ALS Unfiltered 2019 webinar will be of interest to some Forum members.

    Register on https://www.als.net/als-webinars/register/05142019/


    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  2. #2
    Forum Member Ellie's Avatar
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    In case there is any confusion, the stated start time of 11.00am EST/US time zone for the webinar, is 4pm (16.00hrs) our time on Tuesday 14th May.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  3. #3
    Thanks Ellie

    Hope to join in.

    Doug x

  4. #4
    Forum Member nunhead_man's Avatar
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    Hi Ellie

    Confusion here certainly in that I knew that the USA is behind us (in more ways than one!)

    But I was not quite sure how much until I looked and then realised I probably could not take part in all of it, given it is 16 hours BST (British summertime)

    Warmly

    Andy
    Warmly


    Andy

    ​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

  5. #5
    Interesting webinar. Available for a month apparently.

    A good summary of current drug trials - and a realistic comment on Endaravone. I am more and more convinced that a treatment for some forms of familial MND will be found sooner rather than later and well ahead of treatment for sporadic MND.

    It highlighted the complexity and duration of the drug development process, which is not helped in the screening of patients by the huge spread of symptoms and variable rates of progression we know only too well.

    I found their precision medicine program fascinating, including the use of accelerometer data and enlisting the help of Google in analysing 83,000 voice recordings as predictors of progression.

    Doug

  6. #6
    Forum Member Ellie's Avatar
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    Hi Lynne / any interested parties,

    The webinar video is now available to view - registration required.

    https://www.als.net/als-webinars/

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

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