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    Open letter

    https://patientsunited2endmnd.org/current-signatories/

    This open letter shows the wide age range of those diagnosed with MND. Tragically long.
    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.​​​​​​

    #2
    Thanks for sharing it helps to demonstrate we are truly not alone. 👩‍👩‍👦‍👦👩‍👩‍👧‍👦👨‍👩‍👧‍👧👨‍👩‍👦‍👦xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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      #3
      I’m in there. Anybody else? Think it’s being handed in to 10 Downing Street tomorrow by Doddie Weir.
      Last edited by John D; 20 September 2021, 10:50. Reason: Added last sentence
      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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        #4
        Why give it to a bunch of over privileged tossers who consider the great British public as cattle?
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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          #5
          I'm in there...
          I think the more it's pushed into the political arena the better. We all know it's about £££ & votes. However MND clearly effects people of all ages....who could still be working. So additional investment in finding a treatment that works will eventually be financially beneficial to the state. It's all about ££££s
          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


            #6
            Thanks for sharing that Linda. I've asked if can get involved any way x

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              #7
              Bless you for posting the link to the open letter, Linda. I've added my name just in time.

              i agree with you - the age range is shockingly wide.

              Doug

              Comment


                #8
                Doug Carpenter it is shocking isn't it...and the more the general public are made aware the better. Personally I was fairly ignorant until diagnosis. However if more funds are needed then people need to know....it's more common than they think....sadly.
                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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                  #9
                  https://patientsunited2endmnd.org/

                  I think you can still sign
                  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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                    #10
                    Still open to sign , just checked it
                    As long as there’s golf and beer I’m happy

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                      #11
                      Just added my monica 👍😁😚🤗xx
                      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                        #12
                        I didn't see any place where you could sign Linda. But l agree it is about dosh and votes. Perhaps we should act more concertedly. And make intentions known. And involve our friends and friends of friends. Votes matter to them x
                        ​​​​​
                        Last edited by Gordan1111; 20 September 2021, 15:47.

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                          #13
                          I'm in there too ! It makes it seem more personal that we can add a few details about ourselves but reading it is heartbreaking! Rob Burrow, Doddie Weir and others are handing it in at Downing Street tomorrow I think. Hopefully there will be publicity to raise awareness x❤
                          Thank you for sharing this LindaB xx
                          Last edited by Deb; 20 September 2021, 16:12.

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                            #14
                            Gordan1111 I think it's still open if you follow the link.
                            You're right most disability rights groups are strong and a force to be reckoned with. Our voices need to be heard ✊👍 (ironic as our physical voices become lost to MND)😞
                            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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                              #15
                              Signed.

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