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Thread: NurOwn

  1. #1
    Forum Member nunhead_man's Avatar
    Join Date
    Jul 2017


    Good morning,

    I was nagged from Patients Like Me to post an update so I went back for an infrequent visit and saw this....

    "NurOwn uses MSCs harvested from the patient. MSCs are precursor cells that have the ability to differentiate into various cell types. NurOwn’s technology encourages MSCs to develop into cells that secrete neurotrophic factors (NTFs) that promote the growth of nervous tissue. NTFs can also help nerve cells survive through their own neuroprotective function"

    Having done a search on this forum I see Ellie commenting that this was in third stage trial and there seems to be some new law in the USA, which allows particular patients to use drugs that are in testing or something?

    Has anybody here gone down the NurOwn route?

    I see from here - - that the 3rd stage trial is still ongoing.

    Presumably, this is something more than just randomly injecting stem cells into somebody's spinal fluid?

    Warmly (vote for me as an MND trustee)


    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

    "Things turn out the best for people who make the best of the way things turn out"

  2. #2
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    There is a Right-To-Try law in the U.S. Andy which allows for people with a terminal illness to try non-FDA approved drugs, once they've undergone Phase 1 Clinical Testing.

    AFAIK, Brainstorm, who make NurOwn, have not participated in this scheme - pharmas are not obligated to make their drugs available under the Right-to-try law - but have given the drug treatment, free of charge, to one person with ALS in the US, who was a driving force behind the law.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  3. #3
    Forum Member Barry52's Avatar
    Join Date
    Mar 2012
    Newark on Trent
    Latest news from brainstorm.

    I’m going to do this even if it kills me!

  4. #4
    A very quick summary.

    Nurown is in a phase 3 in the USA. It will not end until mid to late next year.

    No access is available outside of trial.

    Right to try was responded to by Brainstorm by granting 1 person access to a limited treatment (similar to phase 3 trial dosage).

    We have to wait until trial completion. That will show whether it has an effect or not. Only the trial will provide the compelling evidence either way.

    Brainstorm could simply not afford to offer the drug to everyone via right to try.

    Even with vast financial injections the infrastructure and resources could never be mustered for an unproven drug. Who would bear the risk of the tumbling house of cards if not proven? Hard fact/reality regarding right to try and other early access methods.

    We look forward to the results next year.

    Last edited by Onein300; 11th October 2019 at 10:18.

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