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Als tdi webinar 14 may 2019

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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 Spinal (hand) Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.


    #2
    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 Spinal (hand) Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

    Comment


      #3
      Thanks Ellie

      Hope to join in.

      Doug x

      Comment


        #4
        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. One sided 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"

        Comment


          #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

          Comment


            #6
            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 Spinal (hand) Onset.
            Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

            Comment

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