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  • BobFOwen
    replied
    ALS News Today is a US web-based publication.

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  • BobFOwen
    replied
    I've emailed my MP; topic,"AMX0035 SP-TUDCA application to MHRA." Please email your MP.'

    "Dear MP
    The US FDA has agreed to review AMX0035. Canada’s equivalent is reviewing in parallel. Please contact MHRA and request that it follow suit.
    This is important to those suffering from Motor Neurone Decease.
    The attached document is a short article from the ALS News Today.
    Kind regards"

    ALS News Today is a US publication.



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  • Deb
    replied
    This is a really interesting read. Thanks for posting Shaun x

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  • Shaun
    replied
    Just like to remind everyone COVID and MND are to totally different types of illness, you cannot compare the 2

    COVID is a virus, caused from the SARS virus, which has been around since early 2000’s, so there has been years of research and development of vaccines, it hasn’t happened overnight. Yes they got it to market quicker, but they knew what they were fighting and effectively tweaked existing vaccines.

    Whereas, MND the route cause is still not known, (I acknowledge there is a genetic link in some) because of way we progress it’s difficult to evaluate.
    Take Riluzole as an example it’s still being evaluated and latest reports suggest it extends our lives by 6-19 months.

    AMX phase 3 trials will take about 2 years then it has to be evaluated, so that’s going to be another year.
    Please remember phase2 of the trial only looked at 137 participants, (25% also dropped out)although results showed positives. 48 were placebo, so are you really willing to take a dug which has only be trialled on less 89 patients.
    Although statistics showed a declined in progression, from such a small number of participants how much of that is down to our natural progression rates.
    large scale trials are needed to see if it actually works

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  • matthew55
    replied
    I've said this so many times but false hope is no hope. I've accepted my fate.

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  • Johnny5
    replied
    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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  • Johnny5
    replied
    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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  • Ellie
    replied
    Just to add for readers in Ireland, Dublin will also be a trial centre for AMX0035. xx

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  • matthew55
    replied
    I keep hoping to get Covoid and they keep vaccinating me. I can't win! 😉😁😀😍xx

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  • Graham
    replied
    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.

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  • matthew55
    replied
    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! 😉😁🤗😍xx

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  • aussiegirl
    replied
    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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  • matthew55
    replied
    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.

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  • John D
    replied
    During my scheduled Zoom appointment with my neuro consultant at King’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 £1K 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 King’s. As everyone may know, one is already underway in St George’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.

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  • Simonchip
    replied
    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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