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Thread: Gene Testing

  1. #11
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    Finally got my gene test results fòr c9orf72. As expected it was negative.

    I will now enquire for my next gene test. Why I must persistently ask for specific gene tests is frustrating.

    I now know one gene therapy is inappropriate for me, leaving the path open for others to enter phase 1 trials for gene therapy.

  2. #12
    Forum Member john's Avatar
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    Graham,

    Have you got SOD 1 test results if there is such a thing because although it occurs with familial ALS it also occurs in others with mnd and is a likely candidate for therapy very soon.(by research standards very soon is not quite our everyday definition)

    John

  3. #13
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    Hi John,

    Yes, I will ask for SOD1 gene test next. I'm pretty sure I have a gene thing going on, but not classical MND genes. My uncle who looks very much like me is suffering Primary Supránuclear Palsy. A devastating neurodegenerative disease similar to MND.

  4. #14
    Forum Member john's Avatar
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    Someone posted on alstdi the results of an in depth analysis of the genes of mnd patients and they say that from their work they have arrived at 20% of mnd has common genetic traits! a lot more than the 5 to 10 % reported.
    I think that as genome testing becomes more refined they will find a lot more reasons why some are likely to develop mnd. I must admit I have never heard of your uncles condition.

    John
    Last edited by john; 23rd July 2014 at 23:55.

  5. #15
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    Hi John,

    Yes, I would suggest that genetic factors will end up being the major factor, inherently defective or susceptible to disease.

    Since the announcement of the whole genome project, I have decided to participate in it, and request my neuros be given the results.

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