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Michael L.

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@michaelp-londrigan

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    • December 24, 2020 at 2:26 pm #17259
      Michael L.
      Participant

      My wife and I are getting it as soon as it is offered!

    • November 17, 2020 at 1:16 pm #16824
      Michael L.
      Participant

      Hi Chuck,

      Have you looked into the Healy Platform out of Boston.  I am in a group and one of the participants was recently accepted into a trial with barely meeting 50% lung capacity.  They are calling it the Healy Platform and are trialing multiple treatments at the same time.

      I have participated in a trial with Hospital for Special Surgery it was an 18 month trial and I have completed that and went into the open label.  The drug is called Arimoclomal and the company sponsor is Orphazyme.  I have been on the open label since September.  No changes from the trial so I am assuming I was getting the drug all along and not the placebo but will find out in the spring when they publish their findings.

      Cheers Michael

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