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  • Kayleigh
    replied
    Good point Jaxx. For many of us, our lives are slipping through our fingers like sand.
    Last edited by Kayleigh; 17 January 2019, 21:27.

    Leave a comment:


  • Jaxx
    replied
    What have sufferers got to lose ?

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  • Admin_MND
    replied
    Good afternoon all,

    Thank you to Ellie for sharing the research teams recent blog regarding CuATSM.. We also wanted to give a brief overview to all users of the forum.

    Recent press coverage of results of the Phase 1 trial of Copper ATSM (CuATSM) have reported that the compound produced a 70% reduction in rate of progression and an improvement patients who took the drug at 72mg/day.

    As an Association we recognise this trial as an important first step in the drug development process. However, we must remain realistic when interpreting and reporting data from this small, Phase 1 study. Phase 1 studies are designed to determine what dose of a new drug is safe for people to take. It is too early to confidently report on the effectiveness of the drug although passing this safety milestone is an important development.

    CuATSM is not yet at a stage where a clinician can prescribe it as a treatment. Drug development is a long journey, where any drug has to pass important rigorous checks before approval as a medicine. Historically, many promising drugs have failed at this first (Phase 1) stage.
    We are hopeful that CuATSM will prove to be an effective therapy in the future. The next and important stage – Phase 2 - is to perform a robust trial on a larger number of people to really see if it can alter the disease progression. This randomised, blinded, placebo-controlled trial, is planned for later this year in Australia. We will keep the MND community updated on any news from this study.

    It is positive to see such a clear example of how the money raised by charity supporters can effectively drive research to the point of a 1 clinical Phase trial. All involved should be congratulated on this achievement.

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  • Fru
    replied
    Hi Ellie,
    I too am so glad you posted that.
    Love Fru

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  • Jer788
    replied
    Thanks Ellie for getting the nuts and bolts of this treatment. These trials are very frustrating really a case of “ while Nero fiddled Rome burned “. I hope we’re all still about to get this or alternative treatment.
    Jerry x

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  • Ellie
    replied
    MND Research Blog on CuATSM:

    https://mndresearch.blog/2019/01/15/...y-with-cuatsm/

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  • Doug Carpenter
    replied
    CuATSM abstract jpeg.jpg

    Not sure if this will work.

    I tried to upload and attach the abstract as a .pdf but was told that is an invalid file. So I'm trying it as a .jpeg

    Leave a comment:


  • Doug Carpenter
    replied
    Thanks Dis for the links.

    Yes, very interesting results. I visited one of the research groups in Sydney last July and it was clear that many bright people were doing amazing things.

    There’s a brief summary of the trial here:
    https://alsnewstoday.com/2019/01/10/...phase-1-trial/

    And more technical details, including selection criteria, here:
    https://clinicaltrials.gov/ct2/show/NCT02870634

    There are interviews with Prof Dominic Rowe and Prof Peter Crouch on an Australian radio station here:
    https://www.2gb.com/hope-for-those-l...w-progression/

    Apparently, CuATSM was originally used to deliver copper to hypoxic cells for imaging studies of cancer tissue. It’s taken around fifteen years to get this far, i.e. the first stages of human trials.

    I’m going to attempt to attach a pdf of the Glasgow conference abstract to this post. But this may exceed my Forum technical skills!

    Doug

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  • Jer788
    replied
    Hi folks, I’ve read a few articles regarding this drug and it appears they are looking for trial it’s at any stage of the disease. Apparently you need a referral from an Aussie practitioner/neurologist to be considered. Are MNDA involved ? Can they assist ? Please post if anyone hears anything positive from the UK authorities as I’ve yet to get any positive feedback from them.
    Best Jerry x

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  • Kayleigh
    replied
    Many thanks for sharing that very interesting information with us Douglas.

    I agree with Montana Tony, it does sound very promising.

    Hopefully, there is hope for all of us with this drug, in the very near future. It's about time we had a viable alternative to Riluzole on the NHS! - and maybe this drug will be the one?

    Best wishes,
    Kayleigh x

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  • Montana Tony
    replied
    Sounds Promising

    Sounds promising but it’s early days ,but “ pick me” email on the way to Melbourne just in case

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  • Dis1960
    started a topic CuATSM ?

    CuATSM ?

    First the tabloid take

    https://www.3aw.com.au/melbourne-med...ession-of-mnd/

    https://www.dailymail.co.uk/news/art...e-70-cent.html

    This link suggests CuATSM was discussed at the Glasgow symposium:

    https://www.scimex.org/newsfeed/moto...inical-results
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