Mara’s list of NurOwn responders

Updated 8/10/2020, first version published 8/20/2019

I’ve been making “notes to self” every time I come across someone who describes themselves as a responder to NurOwn. By my count there are at least 24, probably 29. It is criminal that this treatment hasn’t been flowing into my husband since last year. Lots of ball dropping got us to this point.

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.

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!
Thanks go to Mike Henson for several of these.

9 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!)


  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)
    2. Raziel 46 F (Jan 2019)
    3. Mark Bedwell 57 M [Arkansas] ~ Went to FDA meeting in 2019 (April 2018).
    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
    MS – Multiple Sclerosis
    Malia Litman
    Professor Dimitrios Karussis @ Neurology Department Hadassah Medical Center Jerusalem
    Fall 2016, 2017 – 4 treatments


  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.


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

    Link to P3 patients


  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

Leave a reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.