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    #61
    May I remind you of the question you originally asked Simonchip

    Originally posted by Simonchip View Post
    does that mean in time to come if agreed by the fda we will be entitled too receive it in the UK?
    To which I replied, No.

    You asked if AMX0035 were approved by the FDA, the licensening authority in the US, would people in the UK be "entitled too [sic] receive it". The answer to your question is still No: just because a drug is approved for use in another country, be that the USA or Madagascar, does not mean it can bypass the MHRA.



    โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

    โ€‹

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      #62
      We're doooooomed then ๐Ÿ˜ช๐Ÿ˜ช

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        #63
        Thank you MNDA Admin. Much appreciated.

        Hopefully a hospital close to you will be able to give it you Simonchip.
        Copyright Graham

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          #64
          Absolutely no chance I have no ยฃยฃยฃยฃยฃ it's all about the wonga ๐Ÿ˜‰

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            #65
            I'm still hoping our MNDA can deliver but like you, I have my doubts.
            Copyright Graham

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              #66
              I'm living with this disease not dying with it but I have too be realistic I personally think its decades away

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                #67
                During my scheduled Zoom appointment with my neuro consultant at Kingโ€™s London yesterday we discussed AMX0035. Until a Phase 3 trial is set up in the UK the cost of obtaining the drug would be over ยฃ1K per month. 1 of the 2 ingredients is widely available in the UK without prescription but the other would require a private prescription if a doctor could be found to prescribe it.

                An MNDSMART trial is being set up in Kingโ€™s. As everyone may know, one is already underway in St Georgeโ€™s in London. He made the point that in all these trials if the drug is shown to be effective, patients on the placebo are immediately switched to it. An obvious point perhaps but a point worth remembering.
                Diagnosed June 2019. Bulbar palsy. Lost voice. Using PEG fitted April 2021 alongside eating normally albeit slowly and messily at times.

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                  #68
                  I understand clinging to hope but anything found today can only help people who get MND/ASL tomorrow. Something that is dead cannot be made to live again.
                  Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

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                    #69
                    Originally posted by matthew55 View Post
                    I understand clinging to hope but anything found today can only help people who get MND/ASL tomorrow. Something that is dead cannot be made to live again.
                    Don't you think that is good, though? I'd love to see people benefit in the future from any drug that can knock this disease on the head!

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                      #70
                      Er yes I was just trying to point out that I am mute because my voice box is dead tissue. If in the future they can cancel this dread affliction I will be cheering from hell! ๐Ÿ˜‰๐Ÿ˜๐Ÿค—๐Ÿ˜xx
                      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

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                        #71
                        Although I notice the hypocrisy and double standards with regard to Covid-19. While we are expected to show 'A stiff upper lip' and suffer tremendously, we now know what is possible when people who are in the firing line put their minds to it.
                        Copyright Graham

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                          #72
                          I keep hoping to get Covoid and they keep vaccinating me. I can't win! ๐Ÿ˜‰๐Ÿ˜๐Ÿ˜€๐Ÿ˜xx
                          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

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                            #73
                            Just to add for readers in Ireland, Dublin will also be a trial centre for AMX0035. xx
                            โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                            โ€‹

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                              #74
                              Nurown and AMX0035 should be immediately approved by the FDA for use. The same goes in the UK. If they can approve COVID treatment with over 3500 dead and hundreds of thousands of injuries from the Jab...they should figure that both Nurown and AMX0035 are safe. Nobody died from either, so they are safer than the COVID jab.

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                                #75
                                FYI Matthew,

                                The best they can do is to halt progression. Restoration of the nerves that have died is possible, but the nerves only grow about 1 mm per day. 3 cm per month is slow. Maybe by stimulating nerve growth, they can double that to 6 cm per month, which is still slow. Meanwhile, the neuromuscular junction is hanging out, and the muscles are atrophying. If the nerve died in the lumbar region, by the time the nerve could grow to reconnect with the muscle, the neuromuscular junction might have died off. The neuromuscular junction can recover for around 12 months after the loss of the nerve connection (that's why you want to do therapy and keep the muscle active even if you cannot move). So the end run, if they diagnose MND in time, is that the best they can do is reconnect some of the lost nerves if there are no other issues and if they manage to halt the progression of MND.

                                A lot of if'ing going on in my theory. Understand that it is only in the realm of possibilities. MND affects LMN, and that could be anywhere in the spine, including the cervical region. If the damage is high up, the loss of lower extremities would be permanent. The most significant and most optimistic case for some of us is that it halts the progression, and we live the rest of our natural lives the way Stephen Hawkin did (wheelchair, eye gaze, etc.). But hey...look how many books he wrote! Where there is a will, there is a way.

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