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  1. H

    Feeling quite Confused

    I’ll be honest… I’m writing this post to reach out for clarity and hope. Having now bee on this journey for @ 4 years I’m at the stage where I’m beginning to wonder about the research process for ALS. The more I learn about the disease and the more I understand the trial protocols, the more I...
  2. H

    Expanded Access programs

    Hi All… Was wondering if anyone here has had any success with expanded access programs. I’m currently looking at one which would be a significant commitment but at least would allow me to feel as if I am still fighting the good fight. Any thoughts?
  3. H

    Cytokinetics closing down Courage Trial

    Reaching out to see if anyone here has been on the Cytokinetics Courage trial. I’ve been on it for @ 20 weeks (out of the planned 48 weeks) and have been pleased with the result, but am now hearing they are shutting it down. 2 questions… first has anyone been on this trial and if, what’s been...
  4. H

    Trial protocol

    Question …. Is anyone else concerned about the timeline protocol that exists with most trials? While I am one year into a diagnosis, I am now hitting the 3 year mark in regards to when I perceived my initial symptoms started. This means that I essentially will no longer qualify for any trials...
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