Lee Millard

@onein300

1/ 300 is the lifetime risk of developing . My living with Motor Neurone Disease blog. My just giving page

onein300.com/blog
Vrijeme pridruživanja: veljača 2015.
32 fotografije ili videozapisa Fotografije i videozapisi

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  1. Prikvačeni tweet
    18. pro 2019.

    Hi all. This is my final post in my ‘devil is in the detail’ series on my living with blog and the complexities of research - if you have missed the earlier ones here they are..

    1 reply 3 proslijeđena tweeta 7 korisnika označava da im se sviđa
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  2. proslijedio/la je Tweet
    4. velj

    Great video, patient led. Brilliant to see 1 in 300 lifetime risk statistic used in this powerful presentation. It has real brutal context. For eg it means about 1 million (yes ONE Million) of current living population of USA WILL develop in their lifetimes unless...

    2:20
    This past year we set out to change the world. We set out to make real treatments and cures. This year will be no different. ALS does not take a break, so neither will we.
    2 proslijeđena tweeta 5 korisnika označava da im se sviđa
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  3. 4. velj

    Great video, patient led. Brilliant to see 1 in 300 lifetime risk statistic used in this powerful presentation. It has real brutal context. For eg it means about 1 million (yes ONE Million) of current living population of USA WILL develop in their lifetimes unless...

    2:20
    This past year we set out to change the world. We set out to make real treatments and cures. This year will be no different. ALS does not take a break, so neither will we.
    2 proslijeđena tweeta 5 korisnika označava da im se sviđa
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  4. 3. velj

    Morning readers. This is from my devil is in the detail series from late 2019 on disease research. The importance of differentiating between different patient progression rates.

    Devil is in the detail 3 - Stratification -
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    1 proslijeđeni tweet 2 korisnika označavaju da im se sviđa
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  5. proslijedio/la je Tweet
    18. pro 2019.

    Hi all. This is my final post in my ‘devil is in the detail’ series on my living with blog and the complexities of research - if you have missed the earlier ones here they are..

    1 reply 3 proslijeđena tweeta 7 korisnika označava da im se sviđa
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  6. proslijedio/la je Tweet
    29. sij
    Odgovor korisnicima i sljedećem broju korisnika:

    In the 7 months since the started its review of the 6 month rule for the terminally ill, more than 700 people in the UK have died of . It is not reasonable to ask someone who has received a devastating diagnosis to prove they have just 6 months left.

    21 proslijeđeni tweet 27 korisnika označava da im se sviđa
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  7. 29. sij

    This has gone on too long. Review was started over 7 months ago & zero action. Frustration of the community is beyond description. you now need simply to give a precise mile stone plan with firm due date. Time for debate is over.

    1 reply 10 proslijeđenih tweetova 20 korisnika označava da im se sviđa
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  8. proslijedio/la je Tweet
    24. sij

    The Government must prioritise the benefits review for terminally ill people and . Please join me and invite your MP to the meeting in

    7 proslijeđenih tweetova 9 korisnika označava da im se sviđa
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  9. 28. sij

    A great interview this morning. Loved the bit about doing everything after the operation apart from the hoovering!! He says his wife banned him!!

    Look out for Royal Papworth patient Raymond Page and surgeon on at 0850 this morning 📺 🛋. Huge thanks to them both for getting up early to tell the world about our pioneering new lung cancer surgery.
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  10. proslijedio/la je Tweet
    22. sij

    Many early trials today use “data dredging” techniques to create new hypotheses. Such hypotheses must always be tested in a fresh trial. Why? Simply, data could be sheer chance! This & other issues I discuss in this “Devil is in the detail” research commentary

    Vital in research & many walks of life, but often misunderstood/used/presented. This post in my 2019 ‘devil detail’ series discusses statistics in trials including: What is post analysis? & why must confirmatory trials always follow?
    1 reply 3 proslijeđena tweeta 6 korisnika označava da im se sviđa
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  11. 25. sij

    Another piece of the puzzle is found. Gene therapy in one way or another starting to look the way ahead. Early days but evidence starting to build.

    MicroRNAs help to control genes. One, miR-218, is abundant in motor neurons but reduced in . People with less effective variants of miR-218 are also prone to ALS. One gene it controls is for a potassium channel important for motor neuron activity
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    1 reply 1 proslijeđeni tweet 19 korisnika označava da im se sviđa
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  12. proslijedio/la je Tweet
    24. sij

    The Government must prioritise the benefits review for terminally ill people and . Please join me and invite your MP to the meeting in

    18 proslijeđenih tweetova 32 korisnika označavaju da im se sviđa
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  13. 23. sij

    Let’s get this straight. Dither/delay with Brexit caused a bit of upset. Dither/delay with causing REAL palpable suffering. Those diagnosed with incurable killer diseases & delay of 6 months for benefits!! - please - get this done!

    Many thanks to our new MP for taking up our issue with & Here's hoping they act with similar urgency/energy as was devoted to Brexit "No more dither or delay. Let's get done!"
    3 proslijeđena tweeta 4 korisnika označavaju da im se sviđa
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  14. 22. sij

    Many early trials today use “data dredging” techniques to create new hypotheses. Such hypotheses must always be tested in a fresh trial. Why? Simply, data could be sheer chance! This & other issues I discuss in this “Devil is in the detail” research commentary

    Vital in research & many walks of life, but often misunderstood/used/presented. This post in my 2019 ‘devil detail’ series discusses statistics in trials including: What is post analysis? & why must confirmatory trials always follow?
    1 reply 3 proslijeđena tweeta 6 korisnika označava da im se sviđa
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  15. proslijedio/la je Tweet
    21. sij

    There has been a lot of discussion about on social media. Some of what is being stated is unfortunately not accurate, and risks misleading people. We offer some clarifications about NurOwn and the therapy development process. Read more:

    15 replies 22 proslijeđena tweeta 31 korisnik označava da mu se sviđa
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  16. proslijedio/la je Tweet
    21. sij
    Odgovor korisnicima

    Actually, the opposite is the case. Many placebo controlled trials are add-ons and that is often the logical ethical choice when the diseases is serious. See and also

    1 reply 2 proslijeđena tweeta 4 korisnika označavaju da im se sviđa
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  17. proslijedio/la je Tweet
    20. sij

    Looking forward to meeting with today. I will press for clarity on the terminal illness review, including plans for engagement with people affected by terminal conditions. No more delays- time to and deliver real change for people with

    21 proslijeđeni tweet 53 korisnika označavaju da im se sviđa
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  18. proslijedio/la je Tweet
    20. sij

    No more dither or delay, Let's get done! The team has been/remains ready to engage There may be BIGGER issues but nothing as URGENT for the 10 terminally ill people dying daily without the benefits they need.

    11 proslijeđenih tweetova 9 korisnika označava da im se sviđa
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  19. 18. sij

    Following all the excitement with the new trial platform in the U.K. just announced by , I thought I’d reshare the background behind my blog name. Brutal stats that accompany an as yet treatmentless Disease.

    13 proslijeđenih tweetova 19 korisnika označava da im se sviđa
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  20. 16. sij

    Thanks - This is such an important reminder of what historically happened, the timeline and the key events. Read the entire response thread to see the highlights. I agree - this is really really important.

    Thread... One of the most important threads re ALS ever. Historical facts, lessons. Let's learn and move forward boldly. Thanks, cc:
    2 proslijeđena tweeta 8 korisnika označava da im se sviđa
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  21. proslijedio/la je Tweet
    14. sij

    Tomorrow we welcome and to examine ’s thesis on the subject of the population genetics of kuru affected regions of Papua New Guinea and a screen for new evolving loci (ie other than near to the Prion protein gene)

    4 proslijeđena tweeta 14 korisnika označava da im se sviđa
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