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£50 Million for MND research

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    #46
    No mention....I've a virtual appointment tomorrow so I'll discuss 🤔😘
    Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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      #47
      Absolutely brilliant Lee! Let's hope Billy gets his treatment next week!

      Do you have access to the accounts?

      Is anyone monitoring the performance of the treatments for a speedy rollout?
      Copyright Graham

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        #48
        Had my video consultation and we discussed the SMART trial...consultant e-mailed the team as a reminder of my participation. So fingers crossed.

        Thanks Ellie funnily enough he brought up the subject before I did😇😉😘
        Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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          #49
          Oh good LindaB hopefully you'll 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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            #50
            Originally posted by Graham View Post
            Absolutely brilliant Lee! Let's hope Billy gets his treatment next week!

            Do you have access to the accounts?

            Is anyone monitoring the performance of the treatments for a speedy rollout?
            Hi Lee,

            Are we any closer to knowing what precise kind of MND we have?
            Copyright Graham

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              #51
              I’m hoping so much that with the £50 million backing and what Kevin sinfield and other MND sufferers/carers and families have done will speed up the process of getting new treatment and a cure! I honestly believe when the money is put in the right places cure and treatments can be found quick.

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                #52
                Originally posted by Graham View Post
                Absolutely brilliant Lee! Let's hope Billy gets his treatment next week!

                Do you have access to the accounts?

                Is anyone monitoring the performance of the treatments for a speedy rollout?
                We all hope for treatments as soon as possible.

                The MNDA accounts are publicly available on their website. I am a patient and not a trustee, so I have no more access than you do. You appear to have some issues with MNDA governance. I suggest you raise directly with the chair of Trustees.

                With regards to the new commitment from government and the proposals. The announcement was only a week ago. The coalition of charities, researchers and patients is working with government to distill the plans and how the 'translational' project defined within the spending review proposal will operate day to day. There is of course the small subject of the granting of the actual funds. Like any project there will be a need for peer review. Our government is not going to just dish out cash!

                All I can say is that this initiative is fully in line with the Government's Life Sciences vision which itself highlights the funding issues for translational science.

                You can read about the life sciences vision here

                https://www.gov.uk/government/public...ciences-vision

                And if you read our spending review proposal we highlight the absolute crux of a disease like MND which is right in between basic science and the acceleration of discovery.

                https://patientsunited2endmnd.files....sion-final.pdf

                This is effectively a fundamental change/complement to the NIHR and MRC traditional models of funding that government has recognised itself.

                Figure 1 from our spending review proposal (attached) is an excellent way of demonstrating the challenge we have faced.



                Lee



                Last edited by Onein300; 27 November 2021, 11:59.

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                  #53
                  Originally posted by Graham View Post

                  Hi Lee,

                  Are we any closer to knowing what precise kind of MND we have?
                  Do you mean individual diagnosis?

                  MND is the disease as you know. Ie we all have some breakdown of motor neurones, but it varies.

                  Currently there is the general upper/lower motor neurone mix of disease presentations Ie ALS, PLS, PBP, PMA used for typing. This is actually quite good in reality but in the early disease they can get distorted. It's one of the reasons why early patients on trials might appear to show drug effects, but in reality it is actually variation of disease natural history.

                  In reality there are probably dozens of different disease pathways which lead all to the same final pathology. That is why we need to target certain processes because some may be common to all presentations etc.

                  Lee


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                    #54
                    I too have been offered the trial, my start was delayed due to Covid and lack of researchers. I have now been offered a start on 26th Nov., but sadly can't get to the hospital. My powered wheelchair arrives on Dec 6th so I'll then be able to arrange a WAV 🤞. Once I have the vehicle I'll be starting the trail, but now delayed until next year 😕

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                      #55
                      Originally posted by Susie View Post
                      I too have been offered the trial, my start was delayed due to Covid and lack of researchers. I have now been offered a start on 26th Nov., but sadly can't get to the hospital. My powered wheelchair arrives on Dec 6th so I'll then be able to arrange a WAV 🤞. Once I have the vehicle I'll be starting the trail, but now delayed until next year 😕
                      You raise a very relevant issue for MND patients. Travel. People without MND have no idea of the difficulty and challenges.

                      Researchers are very aware of this, and remote trials are in the forefront of new approaches being evaluated.

                      I don't think MND Smart is remote enabled, but I might be wrong.

                      It would do no harm if you asked your site?

                      Lee

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                        #56
                        Originally posted by Susie View Post
                        I have now been offered a start on 26th Nov., but sadly can't get to the hospital.
                        Have you a manual wheelchair and maybe hospital transport can get you to the appointment or, if not too far away, an accessible taxi? xx
                        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                        Comment


                          #57
                          Like many of us who know the MNDA, it is better not to get the hopes up, Lee.

                          It still seems like a bleak prospect, imprecise uncertain diagnoses, failing trails, no effective governance over the £50M.

                          Let us hope we have better news next year.
                          Copyright Graham

                          Comment


                            #58
                            Originally posted by Graham View Post
                            Like many of us who know the MNDA, it is better not to get the hopes up, Lee.

                            It still seems like a bleak prospect, imprecise uncertain diagnoses, failing trails, no effective governance over the £50M.

                            Let us hope we have better news next year.
                            Graham,

                            I am a bit confused. I answer your questions about issues you might have re the MNDA and then a question about types of MND and then you state there’s no governance over the new £50m!! It’s only just been committed by government!!!!!

                            Governance will be key and I have been open and given you all the detail, extensive, of the approach and why government agreed that neurodegenerative diseases need a new focus on translational research.

                            I will continue to update the forum with news on this unique global investment (largest anywhere globally) to ensure the community both old and newly diagnosed are kept informed.

                            i suggest you take any existing issues you may have regarding the MNDA to the trustees. This forum is not the most appropriate forum for that debate I would suggest.

                            Lee

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                              #59
                              Originally posted by Onein300 View Post

                              You raise a very relevant issue for MND patients. Travel. People without MND have no idea of the difficulty and challenges.

                              Researchers are very aware of this, and remote trials are in the forefront of new approaches being evaluated.

                              I don't think MND Smart is remote enabled, but I might be wrong.

                              It would do no harm if you asked your site?

                              Lee
                              That's a really valid point...transport and travelling to appointments is problematic, hopefully new ways of managing these remotely are considered.
                              Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

                              Comment


                                #60
                                Originally posted by Ellie View Post
                                Have you a manual wheelchair and maybe hospital transport can get you to the appointment or, if not too far away, an accessible taxi? xx
                                It's quite a journey, 20 minute wheelchair taxi to the ferry, an hour on the ferry which is fine, and then an hour by car to the hospital. It seems that hospital transport isn't available for the trial. I think I've just got to wait to get the WAV.
                                xx

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