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    #16
    I suspect early than 2024, probably 2022 or earlier. Yes only a part of our community, but we have to stop trying to cure all. All the trials that include all and sundry are nearly pointless unless you have a miracle drug or much more precise disease measures. Some interesting work going on there. We are really at the cusp and just going over perhaps of a revolution.

    But once one group is treatable, the walls will tumble.

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      #17
      Hi onein300 I admire your hope. But I seemed to have heard that one before. And I suppose most of the old school on here too. Something has to change . Because you will be saying the same thing year after year.

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        #18
        billy106 Good job we're not all as pessimistic as you then.
        โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

        โ€‹

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          #19
          My glass remains half full.
          Iโ€™m going to do this even if it kills me!

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            #20
            Originally posted by Barry52 View Post
            My glass remains half full.

            To the optimist, the glass is half-full. To the pessimist, the glass is half-empty. To the engineer, the glass is twice as big as it needs to be. - Anon


            Each day is made easier with a bit of humour.

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              #21
              Originally posted by billy106 View Post
              Hi onein300 I admire your hope. But I seemed to have heard that one before. And I suppose most of the old school on here too. Something has to change . Because you will be saying the same thing year after year.
              Sorry I totally disagree.

              If you had asked me 6 years ago the same question it would have been 10 years at least. Even worse if you had asked any neuro 25 years ago they would have said never!!

              We had no mechanisms/techniques back then to target the disease. We do now. Itโ€™s now a matter of drug selection/new techniques.

              Now in 2020 it is the rising consensus that we WILL see approved therapies for some forms of our disease in a very short time frame. This is for very good reason.

              Once industry see a small, but significant, part of our community treated, research funding will explode!

              Progress is being made.

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                #22
                Hope for the best but prepare for the worst, it's always worked for me. ๐Ÿ˜„
                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

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                  #23
                  Should never stop hoping.
                  when i can think of something profound i will update this.

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                  • Hi 1in300,

                    I, like you, want to be optimistic but we have to face down the obstacles in our way. There is a great deal of apathy within our very own MNDA. When I asked this question at last month's AGM, 'should the NHS be gene testing every one of us?', as a prelude to precision medicine, our Dr Brian Dickie said for us not to get our hopes up, companies are playing us.

                    Either we have poor advocacy or it will be a couple of years more.

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                      #25
                      The thing is gene testing is a great idea if it leads to positive things but others worry about results causing problems with insurance, mortgages and employment. Others might not want to know what is heading their way. I'm not saying I don't think it's a good idea I'm just looking at the arguments. ๐Ÿค”
                      when i can think of something profound i will update this.

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                        #26
                        How long have they been searching for a cure for cancer? Something to ponder. ๐Ÿ˜‰
                        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

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                          #27
                          Advancing in science take place every day. Every day they get closer to a cure in the new technology of CRISP and stem cells technology there is expected to be a major breakthough this December.

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                          • Alternatively, people may ask God for a Miracle, Denise. But you must be without sin and even then, God has the option to refuse.

                            Being fresh off the MNDA Naughty Step, Denise, I think you ought to get a gene test.

                            I feel your need for another hug. Coming up... hug-hug-hug-hug xxx

                            Comment


                              #29
                              Originally posted by Graham View Post
                              Hi 1in300,

                              I, like you, want to be optimistic but we have to face down the obstacles in our way. There is a great deal of apathy within our very own MNDA. When I asked this question at last month's AGM, 'should the NHS be gene testing every one of us?', as a prelude to precision medicine, our Dr Brian Dickie said for us not to get our hopes up, companies are playing us.

                              Either we have poor advocacy or it will be a couple of years more.

                              Re gene testing. Thereโ€™s not much testing routinely currently as there is no treatment.

                              However, if you ask you can get tested.

                              But once a treatment is available gene testing will be the norm for the requisite genes.

                              What do you mean companies are playing us?

                              I donโ€™t seen apathy at the mnda regarding research at all. They probably have best governance worldwide with regards to research grants.



                              Comment


                              • If people with MND are to prepare for the various treatments available in mid 2022, people can prepare by getting gene tested now. There is counselling involved and it takes time and then there is the gene test itself that takes more time.

                                You have to ask Dr Brian Dickie what he meant, however I have seen companies promising much over the years and delivering exactly zero in this country. BrainStorm, Neuraltus, Genervon to name a few.

                                The apathy is not centred on the research, it is in delivering a treatment.

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