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
