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    #46
    Apology???

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      #47
      For saying my posts are gloomy and depressing
      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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        #48
        https://www.mirror.co.uk/sport/rugby...e-25018506.amp

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          #49
          Apologies not given or needed sir πŸ˜€πŸ‘πŸ»

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            #50
            Agreed πŸ‘πŸ˜πŸ™πŸ˜…xx
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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              #51
              Stay strong Matthew and keep being militant πŸ’ͺπŸ˜€

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                #52
                A rebel for every cause me πŸ˜…πŸ‘πŸ˜πŸ€—xx
                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                  #53
                  Originally posted by Graham View Post
                  What does our MNDA think about these various concoctions? Surely it must have an opinion.
                  Apologies Graham and everyone, as we weren't tagged, we've only just seen this.

                  We absolutely understand why people with MND are searching for treatments to slow down the progression of their disease and ultimately cure it. The MND Association is striving for the same thing.

                  We have been speaking to the team at Amylyx throughout the current Phase 2 trial which is testing a combination of two drugs which are already licenced for other purposes. Initial evidence from the Phase 2 trial suggests that the combination of the drugs being used may slow down the progression of the disease by around 6.5 months.

                  This is of course a positive and welcome step forward. And it is yet another indication of why now is the time for the Government to invest in targeted MND research. Hopefully as you will seen from our United to End MND campaign and the open letter that was handed in to No 10 yesterday, it will have a positive outcome. This trial, and others like it are, now more than ever, taking us in the direction of treatments which will make a real difference to people with MND now and in the future.

                  You can find out more details on the trials on our website here -
                  https://www.mndassociation.org/research/about-mnd-research/clinical-trials/treatment-trials/
                  This page will be regularly updated as things change.

                  As already posted elsewhere, the Research team posted an excellent blog on the subject earlier in the year - https://mndresearch.blog/2021/01/19/...ension-trials/

                  Thanks,

                  Forum Admin.
                  Our working hours are Monday to Friday 8:30am until 5pm

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                    #54
                    Even 6.5 months is 2 long in my case. πŸ˜‰πŸ˜€πŸ˜πŸ€—xx
                    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                      #55
                      Originally posted by Admin_MND View Post
                      We have been speaking to the team at Amylyx throughout the current Phase 2 trial which is testing a combination of two drugs which are already licenced for other purposes.
                      When you were speaking to the Amylyx team, did the possibility of UK test centres for the imminent Phase III clinical trial of AMX0035 come up in conversation?

                      Thanks xx

                      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                      ​

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                        #56
                        Originally posted by Ellie View Post
                        When you were speaking to the Amylyx team, did the possibility of UK test centres for the imminent Phase III clinical trial of AMX0035 come up in conversation?

                        Thanks xx
                        Hi Ellie

                        The Phase 3 trial will be happening at some research centres in the UK but as yet we don't know which ones. We are waiting for more information from Amylyx where it will be done, who would be eligible and how people will be signed up.

                        Thanks,

                        Forum Admin.
                        Our working hours are Monday to Friday 8:30am until 5pm

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                          #57
                          That's great news Admin_MND Hopefully some forum members will be lucky and get on the trial. xx
                          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                          ​

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                            #58
                            So let me understand something, there's going to be some tests soon but we don't know when. We don't know where and furthermore we don't know will be eligible forgive my insolence but this sounds very spurious, it was my original post about amx0035, and I've noticed a lot of complexity with trials, i hope it comes but I won't hold my breath!!

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                              #59
                              Originally posted by Simonchip View Post
                              ... we don't know will be eligible
                              If you mean "we don't know [who] will be eligible", yes we do. The eligibility criteria is available for all to see, along with other trial data, if you care to search for it.
                              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                              ​

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                                #60
                                Forgive me Ellie but I put this post up about amx0035 and asked what the likelihood of getting this and YOUsaid in a word NO now your all for it πŸ€”πŸ˜€ I have been researching have you?

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