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    #61
    Good morning all

    Originally posted by Graham View Post
    With Brainstorm failing last week
    Mike Henson in the US disagrees with you – the USA folk have picked up the improvements in the trial created in the later stages of MND as something that should be promoted to help people with MND survive longer even if it is not creating a complete reversal and are trying to get the FDA to approve it as a treatment.

    I could post some of the 1 hour videos that Mike produces to get his group to badger USA legislators to get this stuff done if anybody wants to see them.

    Warmly


    Andy

    ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 50% left arm and 90% right arm, plus other bits including left shoulder– Campaign contact Winchester and Southampton branch, and trustee of the Association

    "Things turn out the best for people who make the best of the way things turn out"

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      #62
      Its a bit deflating when there is a flurry of excitement on the research etc coming out of Edinburgh. if you go back on early posts in this forum , you will see the same excitement but as usual nothing sees the light of day. again still only Riluzol out there, and an ever greater demand for grants . or as I say , career furthering grants and for back slapping events. Last 40 yrs Millions of pounds donated and still not as much as an aspirin. Do you get the impression there must be another road. ie getting into bed with big Pharma. I await the replies from the usual bunch , we must keep trying this trusted road zzzzz

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        #63
        Hi Guys,

        I badly wanted Brainstorm to succeed despite my reservations about their approach. The main point was that the markets thought that they had failed and Brainstorm lost over $100M of equity. Had they had a successful trial, Brainstorm would be worth well over $1Bn.

        What I find baffling and telling is that the NHS still have difficulty in telling us what sort of MND we have. From a cancer analogy, do you have lung cancer or brain cancer??

        There are many ways that our neurones fail and the b'stards are molecular sized and deep down in us.
        Copyright Graham

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          #64
          I wonder, do people have to get gene tested to benefit from cancer treatments? I'm not party to the inner workings of what research is going on, and why only into some forms of mnd. If this is the hereditary form, then that won't be most of us. Everything about the research, how it will translate into actual treatments/therapies and techniques, and that it should be prescribed to pretty much everyone with any mnd, as soon as it is approved, regardless of whether they do or don't submit genetic info, should be a given, open and transparent! There are thousands of other serious illnesses we treat daily without making sufferers feel they are asking for some sort of special dispensation to be informed and treated.

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            #65
            While cancer is very obvious in many cases, the better and modern way to treat cancer is to understand how the cancer forms using genetics, rather than poisoning the entire body and hoping that the cancer dies first.

            The 100,000 genome project that I was allowed to join was primarily about studying the genetics of cancer. However, it also was able to identify a gene in me that probably caused my MND.
            Copyright Graham

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