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  1. 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...
  2. 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...
  3. 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...
  4. 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...
  5. 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...
  6. 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...
  7. 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...
  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. 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.
  10. G

    Edavarone users - alsuntangled requesting data

    ALSUntangled is looking for PALS who purchased and tried any forms of Edaravone. Email bedla001 (at) mc.duke.edu if you are willing to share your experience for our upcoming review.
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