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    #1

    NurOwn

    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 - https://alsnewstoday.com/nurown/ - 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)
    Warmly


    Andy

    ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 90% left arm and 90% right arm, plus other bits including both shoulders and also some breathing issues – Campaign contact Winchester and Southampton branch, and trustee of the Association

    "Things turn out the best for people who make the best of the way things turn out"
    Tags: None
    #2
    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 Spinal (hand) Onset.
    Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user    .
    ​

    Comment

      #3
      Latest news from brainstorm.

      http://ir.brainstorm-cell.com/node/9666/pdf


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

      Comment

        #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.

        Lee
        Last edited by Onein300; 11 October 2019, 10:18.

        Comment

          #5
          Petition: Explore options for making NurOwn available to treat Motor Neurone Disease (MND)
          https://petition.parliament.uk/petitions/301033
          No effective treatment exists for 5,000 sufferers of MND in the UK. NurOwn is in the final months of Phase 3 of a US FDA regulated clinical trial. Phase 2 data indicated NurOwn was safe and demonstrated signs of efficacy at low doses.

          Comment

            #6
            Hi, Just thought I’d ask if anyone else on the Forum is on the Mirocals trial which I am and have been for a year now with 6 months left before it finishes, I know theres about 200 people in the UK and France on the trial which is in stage two. From what I understand it's a slow down treatment boosting to the T cells and immune system, apparently during research prior to the trial on people who had died of MND they found there was a real shortage of T cells. I must admit although you are either on the real drug or a placebo without knowing I’m absolutely sure I’m on the real drug due to the flu like symptoms I get every month during the 5 day cycle once a month. I feel as if I might not have progressed as quickly as predicted or I could just be lucky and am progressing slowly.

            Regards

            David

            Comment

              #7
              Hi David

              I'm not on the trial but I am playing around with some things that allegedly might slow my progression.

              However of course I'm in class of one as everybody's MND is their own so I have no idea whether I would be living longer or decaying faster if I wasn't doing what I was doing since I can't very well go back and undo what I've done until somebody designs a time machine and I can clone myself.

              At least you may have the comfort when the trial is finished that you will have some understanding of how the whole cohort has "behaved" and you will know whether you are in a position to get information whether you were on the placebo or the good stuff at that point?

              I understand generally those running such tests will not tell participants which group they are in because there does seem to be some partly well-documented information that telling people they getting some sort of drug whereas in fact giving them sugar water or whatever actually makes them get better despite them not having taken any efficacious compound
              Warmly


              Andy

              ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 90% left arm and 90% right arm, plus other bits including both shoulders and also some breathing issues – Campaign contact Winchester and Southampton branch, and trustee of the Association

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

              Comment

                #8
                I've been doing some research like everyone else and there's a petition going around to sign to encourage NurOwn exploration in the UK for those with MND. Many patients who were on the trial in the U.S saw amazing affects and so may be worthwhile to push here in the UK. I was shocked myself to find only 36,000 have signed this... has anyone else shared this. Deadline for this petition is September 2020 (deary me that'll creep round the corner in no time)

                Petition: Explore options for making NurOwn available to treat Motor Neurone Disease (MND)
                https://petition.parliament.uk/petitions/301033?fbclid=IwAR0G9u7E5zdfAdgoBwO7izzekipRfnYe3GNv6UmJvEppWD8B7vT01z_oWHA
                No effective treatment exists for 5,000 sufferers of MND in the UK. NurOwn is in the final months of Phase 3 of a US FDA regulated clinical trial. Phase 2 data indicated NurOwn was safe and demonstrated signs of efficacy at low doses.

                Comment

                  #9
                  More news from Brianstorm.

                  http://ir.brainstorm-cell.com/node/10121/pdf


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

                  Comment

                    #10
                    Thanks for posting Barry. I'll have a read.

                    Tess x

                    Comment

                      #11
                      It was patented in Europe last January

                      Comment

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