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    Public perception

    I listen to the radio a lot and all I hear is adverts for Cancer and Heart disease. If we can't get on something like gold or local radio where's the point? The amount of people I meet who have no idea what MND is. Maybe it's because we are a lost cause? 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

    #2
    matthew55. Admin_MND
    ​​​​​​​Good point....maybe we should have an ad campaign to raise funds & raise awareness across all media including TV.
    Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

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      #3
      I saw mnd on the great North run.

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        #4
        Andy Burnham, Manchester Mayor was running the GNR for Rob Burrow’s Β£5 million appeal for a new MND centre of excellence in Leeds. He was given the number 1 by the organisers.
        Diagnosed June 2019. Bulbar palsy. Lost voice. Using PEG fitted April 2021 alongside eating normally albeit slowly and messily at times.

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          #5
          I put this on yesterday but it seems that it is on its way to China!

          https://www.bbc.co.uk/sounds/play/m000zdv3

          People really don't appreciate us disabled anywhere on the media. It is just a fact of life.

          What to do??

          We really struggle just to get from one day to another. I just wish we had an Association that knew how to look out for us.
          Copyright Graham

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            #6
            That would make sense. 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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              #7
              Hi all,

              Thank you for your comments around raising awareness of MND and we are glad to see some of you have seen the recent coverage around the Great North Run and Rob Burrows.

              We always showcase our latest campaigns and initiatives on our website, social media channels and through local and national press. There are also lots of opportunities for you to get involved too and help us raise even more awareness. You can find out more here https://www.mndassociation.org/about...eness-raising/ .

              You may also be interested in signing an open letter which is being presented to Downing Street on Tuesday 21st through the United 2 End MND Campaign https://www.mndassociation.org/get-i...ed-to-end-mnd/ .

              Many thanks,

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

              Comment


                #8
                Originally posted by Graham View Post
                I put this on yesterday but it seems that it is on its way to China!

                https://www.bbc.co.uk/sounds/play/m000zdv3

                People really don't appreciate us disabled anywhere on the media. It is just a fact of life.

                What to do??

                We really struggle just to get from one day to another. I just wish we had an Association that knew how to look out for us.
                Hi Graham,

                Just a reminder, you can share any feedback you have about us as an Association on our feedback form https://www.mndassociation.org/about...t-us/feedback/ .

                Many thanks,

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

                Comment


                  #9
                  Originally posted by Admin_MND View Post
                  Hi all,

                  Thank you for your comments around raising awareness of MND and we are glad to see some of you have seen the recent coverage around the Great North Run and Rob Burrows.

                  We always showcase our latest campaigns and initiatives on our website, social media channels and through local and national press. There are also lots of opportunities for you to get involved too and help us raise even more awareness. You can find out more here https://www.mndassociation.org/about...eness-raising/ .

                  You may also be interested in signing an open letter which is being presented to Downing Street on Tuesday 21st through the United 2 End MND Campaign https://www.mndassociation.org/get-i...ed-to-end-mnd/ .

                  Many thanks,

                  Forum Admin
                  Brilliant coverage of all the above! Still a very good idea as mentioned in this thread (@Matthew55) to have an advertising campaign similar to cancer charities - are there any plans in the pipeline for that?
                  Letter signedπŸ‘πŸ‘
                  Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

                  Comment


                    #10
                    Just some general mumbling’s, why is running such a popular way to raise money, when the people who need help can’t really take part, sometimes I feel that it’s able bodied people showing off
                    A652713E-EC42-4855-A359-1184B4BDA72B.jpeg
                    As long as there’s golf and beer I’m happy

                    Comment


                      #11
                      The para Olympics winds me up now that I'm disabled. They make it look like disability doesn't affect them. Public awareness is key.
                      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

                      Comment


                        #12
                        Shaun My sentiments too Shaun. I've learned though not to look the gift horse in the mouth, donations are donations...

                        A popular fundraiser here is the annual sponsored silence for MND. 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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                          #13
                          Is it possible to back date the sponsored silence to... let's say 2011?
                          Copyright Graham

                          Comment


                            #14
                            Originally posted by Admin_MND View Post

                            Hi Graham,

                            Just a reminder, you can share any feedback you have about us as an Association on our feedback form https://www.mndassociation.org/about...t-us/feedback/ .

                            Many thanks,

                            Forum Admin
                            Thanks for reading my post.

                            I've provided feedback that I struggle to use this forum. Moreover I am struggling to type full stop, like many of us. A plug-in to this forum to assist with typing would be a great help.

                            Mindful of more distressing posts on this site this week I need to get back to the care app.
                            Copyright Graham

                            Comment


                              #15
                              I recently paid Β£120 for a MND banner for a boundary hoarding at a tiny cricket club in deepest Devonshire so I understand everything helps but a coordinated campaign using radio and TV is what is really needed.
                              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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