1. M

    Healey Platform Trial Regimen F

    Does anyone have more information on the F Regimen of the Healey Platform trial? My husband talked to the recruiter today and she told him they’ll start recruiting in March for that regimen. He can do a 3 hour long appointment to see if he’s eligible but I was also curious if there’s any...
  2. Kristina1

    mexiletine side effects please advise

    Hi I was hoping others who are on or have tried mexiletine could chime in with their experience. Apologies in advance for the length of this post. Background: I'm in the AMX0035 (amylyx) clinical trial in the open label phase meaning we know for sure I am receiving the real drug. I was told...
  3. F

    st pat's day

    Reilly went to trial for armed robbery. The jury foreman came out and announced, "Not guilty." "Oh my!" shouted Reilly. "Does that mean I get to keep the money?"
  4. Kristina1

    AMX0035 (Centaur's amylyx) extension extended again

    I'm in the 12 month open label phase of AMX0035. Open label phase is where everyone gets the real drug, regardless of what you were on during the double blind placebo controlled part of the study. My 12 months open label ends in a April, but earlier this month they let us know they are...
  5. T

    Ques. on Brainstorm (NurOwn Trial)

    Hello: I am a cALS for my husband. I have questions about the Brainstorm Cell Therapeutics (Trial of NurOwn for ALS): 1) What are the pros and cons of this trial? 2) It seems to have promising anecdotal info. -- why aren't more people doing it? 3) When will results be published? 4) When could...
  6. J

    Brainstorm Nurown 'Right to Try' participant shares progress

    As some of you may know, Brainstorm granted one PALS free access to NurOwn as a 'thank you' for the work he did on Right to Try. He is not in a trial but is being given the course separately. His update is on Facebook -- matt.bellinski.7 Mod note -- not linking directly due to fundraising...
  7. S

    Edaravone feedback on its effectiveness

    Hi first time on this forum. Seamus from Ireland diagnosed1year but symptoms about 4 years, 49 married 4 kids. What I would like to ask people is about Edaravone. It has been in use in the US since 2017. It is not available in Europe yet but there is a large clinical trial this year on the oral...
  8. E

    On a PLS rating-scale and clinical trials

    Here is an interesting video:
  9. KimT

    Is anyone in or following the CuATSM Study? I have a hard time reconciling this with the fact that my free copper was high at diagnosis and I got it down to normal levels. My serum copper level was always...
  10. Clearwater AL

    One at the bar...

    Fifty years ago today I landed in Viet Nam, assigned to 1st Field Forces headed to the Tri Border of Viet Nam, Laos and Cambodia. Just a few miles from the Ho Chi Minh Trial. Known as the Central Highlands. Fourteen months later I returned to the States. In Viet Nam we referred to the States...