trial

  1. D

    NP001 updates?

    Just wondering how others are doing in the study. Hubby just had his 3rd infusion. His energy spiked afterward and lasts most of the month but it hasn't stopped his progression at all. I actually feel like it's sped up a bit since he started the trial.
  2. Kristina1

    Atlis

    I'm doing the amylyx trial and they are going to be using the ATLIS for strength testing of the legs, arms, and ankles at each visit. Today was the first visit so we used it for the first time. I think this seems like a really smart way to do it that will probably be easier to track and...
  3. N

    It's been 13 months...

    Hi Everyone, It's been 13 month's since my husband's diagnosis. It's been a really long time since I've posted on here. I just wanted to update everyone on how everything is going, but first I would like to THANK ALL OF YOU :) You were my support system with your encouraging words of wisdom...
  4. Nikki J

    NEALS webinar on the clinical pipeline

    I have heard Dr Cudkowicz speak on this topic before and found it worthwhile https://www.neals.org/for-people-with-als-caregivers/educational-webinars/als-clinical-trial-pipeline-series-spring-2017
  5. R

    masitinib

    https://endpts.com/regulators-order-ab-science-to-halt-trial-work-on-ph-iii-als-drug-demanding-proof-its-long-running-clinical-problems-have-been-solved/
  6. NothingButLove

    Mildly amusing experience at jury duty

    I'll do anything to get out of the house these days. When my wife got a jury duty notice, I thought, "Hey! That sounds fun!". She wasn't scheduled until June and she was just supposed to call in to see if she had to report. I called the jury office and asked if my wife could report in person...
  7. NothingButLove

    My wife starts NP001 on Monday, 5/1/17

    The clinical research coordinator at UCI MDA-ALS & Neuromuscular Center emailed my wife and said: "I wanted to let you know that all the results are in and you qualify for the NP001 ALS trial! We are very excited to have you participate and sincerely appreciate your effort!! As I mentioned...
  8. Kristina1

    question about how placebo would work for stem cell trial

    The neurologist told me that a trial for BrainStorm/NurOwn stem cell therapy would be starting in my area soon. She mentioned there would be a placebo group though. I don't understand how that would work. If you end up assigned to the placebo group are they seriously going to remove your bone...
  9. W

    Skyrocketing Alt/AST on Riluzole?

    Long story short was screening for a trial. Everything good except for liver function so I'm rejected for a month and taken off riluzole. I rarely have a single drink and eat no processed foods. Only changes in life as far as meds/food are: Started riluzole 2/6/17 went gluten free 2/10/17...
  10. Ed340hp

    Tirasemtiv Update - Final

    I finished the Tirasemtiv Clinical Trial. Two weeks open label, to test reactions. 48 weeks double-blind trial. An extra two weeks due to scheduling. My breathing numbers have not dropped for the past 24 weeks, and my leg and arm strength improved over the past 18 weeks (slightly). My small...
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