1/300 is lifetime risk of developing #ALS #MND. My living with Motor Neurone Disease blog. Moving over to Bluesky https://xitter.cf/t.co/5z82GhhK69

Joined February 2015
My series of posts on the difficulties & challenges that our amazing #mnd #als researchers face. Some of these were prompted by the sad misinformation that has permeated our community over the years. But I hope my trust in science shows through (1/3) onein300.com/the-devil-is-in…
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Note to self… Don’t buy Christin Horner’s f’ing book! What a boring interview! Evasive and pointless. “But what about the regrets?!” #bbcbreakfast
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.@JessBrownFuller sad to see you voted against choice and compassion in the assisted dying bill. I hope in future you can consider changing your mind/decision after gaining further life experience. Best wishes Lee Constituent
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Incorrect!!!!! The bill is NOT the original bill!! It was the modified commons bill that was passed to the Lords last year!!! MP Patrick Hurley is just plain wrong!!!! Extra safeguards were included! @kimleadbeater @dignityindying #bbcbreakfast
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Why didn’t you @BBCBreakfast #bbcbreakfast challenge him!!?
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Absolutely brilliant - £500k already. Although this won’t in anyway reduce the unimaginable grief of officers families it shows the country is with them. This awful crime against those who protect us every day must be turning point against growing lawless behaviour of the few.
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At a time social media under scrutiny #bbcbreakfast promotes family reality YouTube chn. Poor use of licence payers money that will lead to more ‘mental health issues’ @BBCBreakfast - presenters visibly cringing. In meantime if u ever run out of useful DIY videos (ie never!)..
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Lucy Powell is having a car crash interview on @bbclaurak. Laura mashing her to pieces so that she can only spout vacuous superlative rhetoric.
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Following on from my optimistic review of the last decade of MND/ALS Research. Here is the flip side. I use the dramatic term Dark Side. These are things which need to improve, and despite the critical nature I remain an optimist. #mnd #als onein300.com/2026/06/28/the-…
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A month ago I posted this in my devil detail series on #mnd #als research. All about the advances in the last decade. On Friday, brace yourself for the Dark side of the last decade in research, a follow up, yes the not so good stuff… onein300.com/2026/05/13/that…
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You can read all about the campaign and the unique coalition of patients, researchers, major charities, industry and government on the #United2EndMND website United2Endmnd.org (2/3)
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The UK MND Research Institute was the result of #United2EndMND funding campaign in 2021. Bringing together leading research centres from all over UK to implement National Strategy for translational MND research along with vital infrastructure (1/3) Ukmndri.org
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Lee Millard retweeted
Delayed approval of #tofersen for 2% of UK @MNDPatients who would benefit shows current @MHRAgovuk @NICEComms approval pathway is not fit for purpose for #MND & we clearly lag far behind North America and Europe. Please read this from @united2endmnd united2endmnd.org/2026/05/29… 1/2
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Lee Millard retweeted
united2endmnd.org/2026/05/29… Unless this is tackled now, when the next treatment is taken to UK regulators, it will take 3+ years before it is widely available. Given average survival post diagnosis is 3 years that says it all. @MHRAgovuk @NICEComms @APPGonMND @IanByrneMP 2/2 #MND
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