Mara’s list of NurOwn responders

Updated 5/1/2021, first version published 8/20/2019

I’ve found 30 responders to NurOwn (below). Mike Henson, who tracks cases closely, cites 40. On Feb. 22, 2021, the FDA denied NurOwn, even though NurOwn showed statistical significance in 35% of trial participants and worked in many of the other participants (ie, NurOwn works). The FDA’s denial is absurd, even ignoring the brutality of ALS. Same story with AMX00035 and Alzheimer’s aducanumab. FDA has approved less effective drugs with harsher side effects, which is why we need a congressional hearing ASAP. Join the red tape movement if you haven’t already.

A close friend helped me gain access to the trial [at Mass Gen], which was a first of its kind. My stem cells were harvested and sent to the City of Hope, Calif., where they were grown and then injected back into my spinal cord. This trial involved 14 trips to Boston over a 12-month period — I was the first person in the U.S. to complete the trial. Throughout, we felt that the stem cells were slowing the progression of the disease, and that I was one of the lucky ones receiving my own stem cells as opposed to the placebo. Unfortunately, after the completion of the year-long study, my stem cells were no longer available to me.

  • Person 25: Gayle Boone—Galye was in Phase 3 and says it works, says, “My decline stopped while receiving treatments.”  She says it should be rolled out now. https://twitter.com/GayleBoone12/status/1265091114589212675
  • Person 26: Ryoichi Hosoya—Saw improvements in function while on trial. Saw reversal and slowing of progression while in trial. https://www.squamishchief.com/community/hope-for-an-als-cure-for-squamish-ski-instructor-and-others-like-him-1.24146741. https://twitter.com/hosoyawinnie?lang=en
  • Probable 27-30 (5 more responders) from Mike’s list. But he gives only initials to protect privacy:  NL, GP, JM, SC. I can’t independently confirm but I trust Mike.
  • Possible persons 31 and 32—Two ladies who do not wish to go public, cited in a meeting of an organization I belong to. Might be separate but I suspect this is referring to Cathy Martin.
  • Possible person 33—I saw another person NurOwn has worked on who attended the No More Excuses protest June 12. I’ll try to track down their name. Might be a duplicate of one of the above.
  • Possible person 34—Dawn mentions another Phase 3 participant she talked with during the trial who went from not being able to walk at for 15 months to walking again. Might be a duplicate.

The above are just those I stumbled upon. There are probably several more. Only about 160 have received the treatment over the 10 years it’s been in trial!

Upon release of the Phase 2 results in Jan. 2016, when my beloved was early stage, ALS orgs should’ve been doing everything possible to get NurOwn to patients immediately. Yet when I asked them, all I could get was excuses.

Thanks go to Mike Henson of No More Excuses for most of these and to Dr. Shah Mino for several of them.

11 thoughts on “Mara’s list of NurOwn responders

    • So sorry for the very long lag time in approving your comment. Not sure how I missed the notification! Thank you for your comment. I did just add the rabbi this a.m. (then I saw this post, quite a coincidence!)

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      • My husband began on ALS Formula treatment from Tree of Life Health clinic. It has made a tremendous difference for me (Visit www .treeoflifeherbalclinic. com )  

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      • Hello Amelia, thank you for your comment. In the past year, several pALS have come out and given the exact protocols they’ve used to gain function back. Healing ALS has a wonderful series on them where they do Q and A with these folks. Nearly in each case they did it by removing processed foods, a TON of supplements, and positive thinking/meditation.

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  1. BCLI NurOwn trial recipients:
    Healey Center ALS Mass General [Boston MA]
    1. David Neufeglise 41 M Mechanical Engineer & Dr Mallika Marshall, Dr Merit Ester Cudkowicz (April 2018) https://m.youtube.com/watch?v=hFFSNZGq_CI
    2. Raziel 46 F (Jan 2019)
    3. Mark Bedwell 57 M [Arkansas] ~ Went to FDA meeting in 2019 (April 2018). https://m.youtube.com/watch?v=4uOJo7zXhOQ
    Passed:
    1. Mark Harrison [Clover]UCI May 2018, Passed Aug 2018

    2. Rabbi Rafael Shmulevitz & Professor Dimitrios Karussis @ Neurology Department Hadassah Medical Center Jerusalem [Mayo Clinic Minnesota] July 2012; Passed Jan 2016

    —————————
    UCI – University California Irvine Research [Neuromuscular Disorders: The BrainStorm StemCell Trial to Treat ALS Speakers: Tahseen Mozaffar MD & Namita Goyal MD

    Annie ALS
    Thurman Maynard
    Matt Bellina
    Craig Reagan

    https://uniqueaccess.com/
    —————————————————
    MS – Multiple Sclerosis
    Malia Litman
    Professor Dimitrios Karussis @ Neurology Department Hadassah Medical Center Jerusalem
    Fall 2016, 2017 – 4 treatments
    http://hadassahinternational.org/malias-18-year-odyssey-ms-back-life-knew/

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  2. Great thanks,
    You would now have to add the 15 patients in P3 with positive outcome that would include Thurman, Mark Bedwell, Roberto Muggli and David Neufeglise but I think all the others are incremental.
    We will have to try tracing the data of the additional 10 or 11 pts.

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  3. $BCLI money pouring in… it is about time dirt cheap P3 ALS treatment with major advocate backup

    Link to P3 patients

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  4. Sorry here is the text on Twitter user @als_now
    Our work has now identified 15 people with ALS in Phase 3 who are responding. Some are well known, most are new. NO MORE EXCUSES on Facebook.

    Liked by 1 person

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