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NEU $1.30

Other Applications of Trofinetide?

  1. perthpest

    504 Posts.

    Hi All,

    Do you know if Larry or Richard reply to emails? I did send one around 14 days ago with out a response to my question.

    Maybe some of the more insightful people about this drug would have the answer of the
    possibilities to my question... it is slightly personal so I will change some names and items.. thanks all.. PS since this letter we are back in hospital because of seizures
    My question relates to the trauma caused to the brain by radiation to the whole of the brain ( which is so common when treating tumors in the brain )

    (Edited)
    Dear Larry and Richard,

    I have been an investor in Neuren both personally and within my SMSF since July 2009, and currently hold a small investment of close to 1,000,000 shares

    Today I write to you on a more personal nature.

    My lovely partner Caroline has been in the hospital in since Christmas Eve, I have only just managed to get her home.
     
    I have being caring for Caroline now, day and night for the past year since her breast cancer returned in late 2013, it has now spread to both lungs, liver and all her bones, about 7 weeks ago this terrible thing had been found to have spread to the brain also, so that apart from the chemo, radiation was needed to the whole of the brain which has now caused damage where Caroline is totally immobile
     
    With close to 40 days now hospital and with the total despair that both me and Caroline have experienced on a daily basis I am left somewhat numb about the world and the treatments available

    The treatment to the whole of the brain has caused damage where Caroline cannot walk, because the communication from the brain is struggling to send the message to the legs (although movement is there but not when Caroline needs it) , the same has happened with her speech and other bodily functions, she is also wringing her hands continually.

    Having read over so many year the benefits of NNZ-2566 I never once thought that some of the terrible aliments and symptoms experienced by the suffers of Retts would somehow touch my life

    Sorry for dribbling on, I suppose my question is this, is there an application in anyway that NNZ-2566 could ever assist with the damage caused by radiotherapy to the whole of the brain, as the interruption to the communication pathways sound similar to those of Retts and TBI.
     
    I don’t know how much time Caroline has left, so your answer may be of no immediate help, but if NNZ-2566 could help with this type of damage to the brain perhaps someone else with such an advance stage of cancer could benefit if you ever trailed it?… at the moment we have nothing to lose and although we are hoping chemo might kick in and help stop the disease if only for a short time.. knowing she is still all there mentally but struggling to communicate or even walk or just roll in bed is so devastating to watch along with knowing what the inevitable might be.

    So many people have this type of damage after radiotherapy to the whole of the brain, I just find it difficult that it is just accepted as something that it is normal by the Drs, and that it may not ever improve

    Thank you for taking the time to read this and perhaps respond​

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