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  • Kara
    replied
    Riluzole taken in conjunction with Ebselen (used to treat Covid-19) or Edvaron (Radicat/Radicava etc) in trials confirmed by FDA were found to be more effective in ALS than by itself- unfortunately not available in UK?

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  • Graham
    replied
    I haven't been cawled 'Sillious Soddus' yet, and you've only just left the Forum's naughty step Denise...

    Yes, it is absolutely brilliant Gary and the power of comedy cannot be underestimated.

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  • GaryM
    replied
    Brilliant sketch that, Graham . One of my favourite films The Life of Brian. I might even watch it, I need a good laugh.

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  • denise
    replied
    What about sillious soddus?

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  • Graham
    replied
    I also go by the name 'Biggus' not Bernie, Jeanette.

    https://www.youtube.com/watch?v=kx_G2a2hL6U
    Last edited by Graham; 27 October 2020, 04:53.

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  • Graham
    replied
    Yes it was relatively recently that I did it. Generally when you are diagnosed it is the end of story as far as the hospital is concerned. MND treatment is to as yet none existent but pretty soon I hope, gene therapies will be offered. Early stage trials are ongoing around the world. You have to know what gene is faulty in order to fix it. Of course it is playing with the stuff of life and it is fraught with complexity but trials are ongoing. Hugs Graham xx

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  • denise
    replied
    Graham
    what made you do the genome trail? Did you already have a diagnosis?
    Denise xx

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  • Jeanette Pearce
    replied
    Bernie - I can relate to the the Monty Python sketch you mentioned... it makes me giggle when I have difficulty moving

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  • GJ22
    replied
    Originally posted by Ellie View Post
    Welcome to the Forum, GJ.

    Click on this photo to enlarge it.

    ALS Genes List (2).jpg
    thank you

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  • Graham
    replied
    Hi All,

    Precision medicine is really exciting and I believe our only hope.

    I participated in the 100,000 Genomes Trail two years ago and I found that I have a spelling mistake in my DCTN1 gene. But much more than that, the researchers were able to model how the gene works and predict that I would suffer as a consequence. Straight after that I was advised that it was only a possibility and not to get my hopes up.

    There is no MND in my family until me, however there is neuropathy on my father's side including PSP, that is similar to MND. A pathway.

    I am hoping that in the too not distant future, even including my lifetime, the NHS will be able to model a cure and be able to offer a treatment.

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  • Doug Carpenter
    replied
    Bless you Ellie!

    Doug x

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  • Ellie
    replied
    Welcome to the Forum, GJ.

    Click on this photo to enlarge it.

    ALS Genes List (2).jpg

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  • GJ22
    replied
    would anybody know where I can get a list of the 30 genes referred to in this thread please?

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  • Doug Carpenter
    replied
    Yes, fantastic news!

    Doug

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  • denise
    replied
    Nobel prize awarded to 2 women with regard to gene editing.

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