data

  1. M

    Twitching for about two weeks - concerned

    Hi all -- Sorry to add another "twitching" thread to a forum full of them, but I suppose everyone's experiences are different and hopefully everyone deserves a chance to be heard. Here's mine: For about two weeks, I've had a twitch in one spot in the middle of my forehead. Same exact spot...
  2. Doglady

    Microsoft supported Research - Answer ALS

    Thought this was an interesting article about a research project called "Answer ALS" where PALS can help to collect clinical, genetic, behavioral, molecular and biochemical data on people living with ALS. Using artificial intelligence and machine learning, researchers plan to analyze the data to...
  3. lgelb

    Biogen picks up Ionis SOD1 treatment option

    This is important not just for advancing SOD1 tx, but establishing another case where a smaller firm (where a lot of ALS work is being done) has successfully handed off a therapy to a larger firm. This helps incentivize ALS research. ---- [Adapted from Seeking Alpha] Having seen positive...
  4. M

    Restless at Night

    My PALS was diagnosed in May 2017. He has ALS/FTD, feeding tube placed in May with continuous feed, Bipap starting in May at night, is all upper body and can still walk but will assistance. When he received the bipap he immediately adapted to it and slept twelve hours the first night. In fact...
  5. lgelb

    Public data on RCH4/NDX peptides

    Posting this public data separately from the current RCH4 thread as it may explain why controlled trials are doubtful as per today's posts, and provide some history. I'm not going to make this an open thread as there is enough rancor in the other RCH4 thread. For more links or clarification --...
  6. J

    Info about EH301

    i tried to contact elysium directly, by now no answer... does anybody have info what is going on with it? copied: The Orphan Drug Designation submission included data from a 2017 double-blind placebo-controlled European pilot study in humans. To expand on the results of the pilot study...
  7. T

    Muscle Fatigue before failure?

    Hello, Age: 33 Male I found this forum as many others have, researching symptoms that lead to possibility of ALS. I appreciate all help with my concerns, my anxiety has been through the roof for the past week. A place I've never been. My concerns: In Feb/March 2018 I started noticing two...
  8. R

    NP001 Neuraltus

    https://journals.lww.com/neurotodayonline/blog/NeurologyTodayConferenceReportersAANAnnualMeeting/Pages/post.aspx?PostID=65 LOS ANGELES–An experimental drug that regulates inflammation and showed a strong signal in a pilot study in patients with amyotrophic lateral sclerosis (ALS) failed to...
  9. J

    Feasibility study for new drug

    let's say there are 5 [email protected] statistic data say less ([email protected]), but there are many poor, old, sick from other diseases etc. it means that there are on earth max 500000 pals (according to official data 100-200000). 90% cannot afford themselves drug which is permanent and cost (lets...
  10. J

    Now, after all, can I bring my cause of ALS?

    hi, since i am diagnosed, i sit at home, go to gym/spa, like i used to do in past 20 years learning about als, read pubmed, alsuntangled... i am not eligible for nurown trial. i am not usa/canada resident, im 50 y old, 210 pounds weight for last 10 years (i felt and i had left elbow luxation...
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