data

  1. jethro

    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...
    • jethro
    • Thread
    • als als? brain canada clinical data diagnosed diet eye foot heart hours kids love medical mri muscles nurown rilutek symptoms test trial usa wheelchair
    • Replies: 7
    • Forum: General discussion about ALS/MND
  2. KarenNWendyn

    NurOwn stem cell phase 3 study

    I have looked into this study and had a fairly extensive discussion with the study coordinator at the San Francisco site. I am posting information about this study here in case anyone is interested. Enrollment is still open for this phase 3 study. The study is sponsored by Brainstorm Cell...
    • KarenNWendyn
    • Thread
    • age als als symptoms autoimmune bipap cell cure data edaravone feeding feeding tube financial hours information night nurown progression riluzole stem cell stem cells symptoms therapy treatment trial
    • Replies: 133
    • Forum: Research and trials
  3. G

    How important is Lateral Rotation (bed)?

    I have been fighting with my Denver VA for over two years now trying to get a lateral rotation bed. They initially, repeatedly refused the ProBed by Freedom Bed, saying that it is 'dangerous'. This is apparently because there's no clinical tests. So, another Vet got a HillRom Progressa bed...
  4. Nikki J

    Radicava webinar reminder

    This Thursday sign up here. https://www.neals.org/for-people-with-als-caregivers/educational-webinars/radicava-a-review-of-clinical-trial-data-and-drug-considerations You can also view it later as NEALS archives their webinar, usually by the end of the day. Worth a browse through the archives...
  5. J

    MS and ALS connection?

    Hi everyone, I have been diagnosed with multiple sclerosis (MS). However, along with sensory symptoms attributable to my MS, I also experience a lot of muscle twitching. I've read the sticky, am aware that muscle twitching is not diagnostic of ALS, and that I don't seem to have any of the...
    • juliasfo
    • Thread
    • als als? data diagnosed ideas information muscle muscle twitching sensory symptoms symptoms twitching
    • Replies: 5
    • Forum: Could this be ALS?
  6. S

    Lunasin again

    Can anyone point me to a report, formal or informal, on the outcome of Bedlack's Lunasin study? I see nothing new in ALS Untangled or via Google search or search here. I'm using up the supply I have on hand, and while my progression is fairly slow, it is happening and the only benefit I've...
  7. Ed340hp

    Tirasimptev continues VIGOR ALS

    I'll get to the update. The VitalityALS phase three trial ended or all participants and trials in October. All reports and data were due for submission. They now think it will be March before publication. The goal of continued good breathing numbers is holding steady. My FVC and SVC numbers...
    • Ed340hp
    • Thread
    • als arm atrophy balance breathing communication data exercise falling food free friend fvc improvement muscle physical therapy progression running therapy treatment trial update walker wheelchair wrist
    • Replies: 5
    • Forum: Research and trials
  8. Ed340hp

    ALS Therapy Development Institute Particiption

    Is anyone else registered and participating in the ALS Therapy Development Institute Precision Medicine Program? I ask because there are open participant spots (280 filled, 20 open). I don't know if participants will be able to benefit from the neuron cell lines grown from the selected...
    • Ed340hp
    • Thread
    • als bucket challenge cell clinical data ice ice bucket challenge medicine research stem cells therapy treatments update
    • Replies: 4
    • Forum: People with ALS (PALS)
  9. 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...
  10. S

    ALS Forums

    I have to say for such a large ALS support forum.... where are the topics of hope, the success stories, the mentions of what works and what doesn't. This is part of the problem, no centralized location for people to share this data.
Back
Top