ALS Advocacy

@alsadvocacy

ALS = Lou Gehrig's Disease Thought it had been cured by now? Still no known cause. Still no cure. Still no treatment. Still quickly fatal. Still outrageous.

Stanford MedX ePatient Scholar
Vrijeme pridruživanja: veljača 2009.

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  1. proslijedio/la je Tweet
    prije 38 minuta

    My recent heart attack put into action being prepared for first responders. Here are a few key takeaways from my visit to the ER.

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  2. proslijedio/la je Tweet
    1. velj
    Odgovor korisniku/ci

    What we really want is access to drugs that have been proven safe for all and very effective for some. This efficacy continues to be denied by very many that could help us. Don't they want us to live?

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  3. prije 1 sat

    Last day to ask questions, comment at website. Grateful for the opportunity to do just that. Please let him know what you think.

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  4. proslijedio/la je Tweet
    prije 11 sati

    Hey , suddenly denying life-saving treatment to a child who has been on it successfully for 6 years is not ok. Rare parents have way too much stress as it is to deal with this. Please do the right thing.

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  5. proslijedio/la je Tweet
    prije 1 sat

    As a I wish to honor all those fighting to , especially my -my wife, without whom I wouldn’t have got to watch .

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  6. proslijedio/la je Tweet
    prije 1 sat
    Odgovor korisnicima

    Only allowing SOD1 patients into a trial is not stratification.

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  7. proslijedio/la je Tweet
    prije 2 sata
    Odgovor korisniku/ci

    What you describe in the nurown and sod1 trials is the use of exclusion criteria. Stratification in brainstorm would be equally allocating rapid and slow progressors to each of the treatment arms.

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  8. proslijedio/la je Tweet
    prije 2 sata
    Odgovor korisniku/ci

    I believe what you are describing is actually just exclusion criteria. “Stratification“ is typically groupings of patients within the trial. This is typically done to ensure balance when you have a heterogeneous sample.

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  9. proslijedio/la je Tweet
    prije 3 sata
    Odgovor korisniku/ci

    Need confirmatory before any approval unless hypothecated post analysis proven already. Conditional approval path vitally needed in USA. We have conditional approval here, & for eg, post P3 Nurown, if proven in even small percentage, that would be how it could be triggered here!

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  10. proslijedio/la je Tweet

    This is important -- The power of precedent: How a one-off decision by Janet Woodcock established an unintended fast pathway at the FDA — what will follow?

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  11. prije 3 sata

    Last day to email comment on Conditional Approval concept... Please read and speak your mind. Thanks,

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  12. prije 3 sata
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  13. prije 3 sata

    Unfortunately, I think a plague is easier to treat or cure than ALS... Connie Mason Michaelis: The challenges of our times

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  14. prije 3 sata

    Why Home Health Care Is Suddenly Harder To Come By For Medicare Patients via Thanks,

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  15. proslijedio/la je Tweet

    To fix a system that is broken it is not enough to have an idea. You must have a moment where the idea becomes a movement. For my daughters, for my wife, and for all those fighting this is our time--it's now or never. Thank you for helping to make it now.

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  16. prije 4 sata

    Is this where a Conditional Approval approach could be helpful? Avoid post hoc analysis but allow for movement forward w confirmatory studies to i.d. responders? I don't know all the answers, but we certainly need to figure out how to get to scientific truth faster.

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  17. proslijedio/la je Tweet
    prije 13 sati
    Odgovor korisnicima i sljedećem broju korisnika:

    Everyone is obsessed with gene therapy as the one and only Hail Mary pass and that’s driving the multi-year wait times and multi-million dollar price tags. Vector manufacturing supply chain is not built for n-of-1. Families pooling $ to build agile vector manufacturing is next..

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  18. proslijedio/la je Tweet
    prije 22 sata

    As you watch the Super Bowl later today and undoubtedly see video of "the catch", remember that the guy who made "the catch"- Dwight Clark- died of ALS. In addition, 49ers' GM- John Lynch- lost his mother in law to ALS.

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  19. prije 17 sati
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  20. prije 18 sati
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