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Thread: Working 2 Walk Symposium Registration Sept. 27-28, 2015 - Bethesda, MD is now open!

  1. #61
    Senior Member kate's Avatar
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    Quote Originally Posted by void View Post
    If I understand it right you're afraid that results are made up/cheated?
    I wouldn't put it that way. The reason for peer review is that scientists are just as capable of kidding themselves as the rest of us are. They work like hell to make an experiment that proves something definitively, and then -- without some kind of completely independent check -- they decide they've done it. They see "proof" when it's not really there.

    I'm not AT ALL suggesting that this is what's going on here. I AM saying flat out that it's in OUR best interests to ask respectfully for more detailed information. I sat there Monday night watching that video of a young guy who could move his legs. I heard him say that his sensation in bowel/bladder was much improved. So clearly SOMETHING happened, right?

    Things I'd like to know include, how old was his injury, can we see an MRI before and after, what kind of testing was done before and after, what was the exact procedure for extracting his cells & for transforming them, what exactly were they "transformed" into, can other labs replicate this procedure and get similar results, etc, etc, etc.

    It's a very complicated thing for us to evaluate honestly. We all want this to be IT. But right now the information is all locked up where we can't review it or get others with more knowledge to review it. On the other hand, I share the frustration over massively slow & overly cautious systems. Not pretending to have a solution here . . . just wanting us to be smart about this.

  2. #62
    Jan-Eric Ahlfors presentation and research was very interesting. A few things that I noticed were, the cell count for implant was higher than any results we have seen in any other phase I trial. There was no rehab component either. He also said these patients were "the worst of the worst" in terms of injury. He showed an MRI of one of the patients who had very severe spinal cord damage.

    I was impressed, but still I want to see the background data and more replication in reputable fields of regulation (other countries) until I get excited.

    I also wanted to hear more discussion between Naiomi & Jan. He didn't get the chance to publicly defend himself in this Q&A which might have given him the chance to help us understand his data and evidence.

    Hopefully, we will have public access to these slides soon, as it was very interesting and was one of the highlights of the conference for me. That said, I am not going to get really excited about it until I see more results published. Hopefully this stays in the SCI market too!

  3. #63
    Quote Originally Posted by kate View Post
    , what kind of testing was done before and after, what was the exact procedure for extracting his cells & for transforming them, what exactly were they "transformed" into, can other labs replicate this procedure and get similar results, etc, etc, etc..
    You can't possibly expect someone to give out crucial information like that this early on in the process, that's absurd and I mean that as politely as possible. This is a business, (weather we like to realize it or not, we are talking billion dollar market) this man is putting his blood sweat and tears into this, he's not just going to give away his work so other people can replicate it (let us also realize that he may be the or one of the lead researchers on this project, but he is far from the only person involved) Nobody wants to spread false hope either, it but in my opinion and I read up on the stuff a lot but I don't pretend to be a scientist, I think this is the best chance we have in regeneration to date and I don't think anyone will do any better. Read up on these products he is using, on New World laboratories website, and for a second just pretend that researchers aren't blowing smoke out their ass and descriptions are accurate from past results not just from one man's perspective but from an entire labs observations. And a brilliant, no basically prodigy researcher cares about his reputation and what he puts out there with his name under... I don't think they just chose Russia because of possibly less strict regulations, but also much less public release of information, or chances for leaked information. Which in itself is a smart move on all fronts (all the more reason I would invest in this company, smart Business) except us getting a little proof to lift our spirits! I believe That time will come when it's good and ready, patented, perfected and effective.

    These are autologous neural cells, even the regeneration matrix could be huge in the future not just for SCI.
    Last edited by JamesMcM; 09-30-2015 at 10:07 PM.

  4. #64
    Senior Member kate's Avatar
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    No disrespect taken, James. Part of me is right there with you.

    The issue is that Dr Ahlors has chosen to place himself outside the usual path (in the USA & CA) to bringing a product to market, which I understand and (in some ways) applaud. The usual path is slower than hell.

    It does, however, ensure both safety and efficacy. It gets products covered by insurance. The questions I was asking are of course stupid if you approach this treatment as if it were already vetted & ready to sell. But it's not, and what I want to know is this: what is going to give us confidence besides reading the tea leaves at a website and a resume?

    Longterm, the goal is treatments that will be standard of care -- meaning, it's just as routine to get them as it is to get a six-month checkup at the dentist. Widely available. Covered by all insurance. No hidden risks or costs. Personnel trained everywhere to deliver them.

    The ugly slow-as-hell system we have gets to that place, eventually. How does Ahlfors' proposed treatment achieve that? To put it another way, if this becomes a thing that only those with $$$$ can go and get in some foreign country, is that a good outcome or a bad outcome? If it turns out that it doesn't work as promised every single time, will there be some recourse for those who took a shot?

    The reason we got rules in the USA about drug/device testing is that in the 50s some European chemists were marketing a drug aimed at morning sickness in pregnant women. They offered samples to American doctors, who gave them out to their patients without even telling them that this might not be safe. It was the baby boom! So many customers . . . nobody knew the formula or saw the data from tests, because -- as you say, it would be stupid to give that kind of information out so early in the process.

    And then thousands and thousands of infants were born blind, or without limbs. And a big fraction of them died before they got to be toddlers.

    So we ended up with this massive, cumbersome process that's designed to prevent stuff like that. And I hate it, too. I would just really like to see data that confirms what I'm being told.

  5. #65
    Senior Member tarheelandy's Avatar
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    Kate,
    After reading the bio on your husband and how much function he has recovered from his accident, I am amazed at how invested you remain in this research when you could have walked away from the whole SCI mess and gone on with your life. Thanks for all of your hard work!

  6. #66
    Senior Member lynnifer's Avatar
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    Was thinking the same when reading her updates late last night. The advocates we have are fierce!
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  7. #67
    Quote Originally Posted by kate View Post
    No disrespect taken, James. Part of me is right there with you.

    The issue is that Dr Ahlors has chosen to place himself outside the usual path (in the USA & CA) to bringing a product to market, which I understand and (in some ways) applaud. The usual path is slower than hell.

    It does, however, ensure both safety and efficacy. It gets products covered by insurance. The questions I was asking are of course stupid if you approach this treatment as if it were already vetted & ready to sell. But it's not, and what I want to know is this: what is going to give us confidence besides reading the tea leaves at a website and a resume?

    Longterm, the goal is treatments that will be standard of care -- meaning, it's just as routine to get them as it is to get a six-month checkup at the dentist. Widely available. Covered by all insurance. No hidden risks or costs. Personnel trained everywhere to deliver them.

    The ugly slow-as-hell system we have gets to that place, eventually. How does Ahlfors' proposed treatment achieve that? To put it another way, if this becomes a thing that only those with $$$$ can go and get in some foreign country, is that a good outcome or a bad outcome? If it turns out that it doesn't work as promised every single time, will there be some recourse for those who took a shot?

    The reason we got rules in the USA about drug/device testing is that in the 50s some European chemists were marketing a drug aimed at morning sickness in pregnant women. They offered samples to American doctors, who gave them out to their patients without even telling them that this might not be safe. It was the baby boom! So many customers . . . nobody knew the formula or saw the data from tests, because -- as you say, it would be stupid to give that kind of information out so early in the process.

    And then thousands and thousands of infants were born blind, or without limbs. And a big fraction of them died before they got to be toddlers.

    So we ended up with this massive, cumbersome process that's designed to prevent stuff like that. And I hate it, too. I would just really like to see data that confirms what I'm being told.
    Kate the sad thing is, that is a dream, chronic spinal cord injury Will never have a "cure" that's available to everyone. Partial treatments yes. But the amount of rehabilitation and very specific constant physiotherapy that'll be needed after any kind of surgery, scaffold implant, cell transplant etc Will never be covered by insurance. At least not enough to get back serious function the body has to be rewired, many researchers are starting to realize this. The cord could be 100% back to normal (I would say we are very far from achieving that) but you've sat in a chair for five years nothing knows where to go it's all atrophied and shriveled away. It all has to be stimulated constantly and functionally towards regeneration, at things won't work same way that used to signals that used to be at the thumb could now be somewhere in the wrist stabilization but that's where neuro plasticity to level things out with constant rehabilitation. That's why things like the kumming walking program are so promising (especially after effective treatment), but even still we don't know if that's the perfect type of functional training gaged towards regeneration!! You have any idea how much it would cost in America or Canada to have nurses, physiotherapists etc stand you up for six hours six days a week? Eventually it would be far more that the treatment itself. So unless somehow we design a chemical treatment that can hold the hands of every single axon and put them exactly where they need to go maybe that will happen for acute (God willing, because nobody deserves to live like this) but never for chronic injuries. Everything just shuts down goes in the state of hibernation it a sense.

  8. #68
    From W2W 2015:
    Confession of amateur activists

    https://vimeo.com/141007167
    Last edited by paolocipolla; 10-04-2015 at 01:41 PM.
    In God we trust; all others bring data. - Edwards Deming

  9. #69
    Thanks Paolo, but that presentation post was a duplicate. It was already posted by U2FP staff earlier today. LINK

    Thanks for subscribing to the U2FP Science and Advocacy Blog and being so anxious to follow along behind all of the wonderful outstanding work being done on the issues of paralysis by U2FP and being so excited about sharing our work with the community on our behalf! You're a devout follower, so stay tuned and keep following the super U2FP team to learn more about worldwide efforts taking place in the area of paralysis research and our various advocacy measures being championed by fantastic paralysis community leaders! However, I'll be sure to post the presentation announcements and information here at the CareCure forum for you when it comes available because double postings won't be allowed here at the forum and it causes extra work for the moderators. Our U2FP Working 2 Walk video library presentations are not part of this registration information thread for signing up to attend the meeting posted months ago. (The registration phase and meeting are over now so people wouldn't be looking for the new video presentation information from W2W2015 here.) The correct title on the above presentation was actually called "Confessions of Amateur Activists". (There were 3 advocates involved in this presentation at Bethesda, MD.) We'll have more paralysis information you can follow along with in the coming days and weeks at the blog and find in the various areas of this forum that will contain many presentations you can begin learning from. Keep checking back frequently for them here at the CareCure forum where you'll find they're already posted after being automated off the U2FP Science and Advocacy Blog at WordPress. Enjoy!

    Last edited by GRAMMY; 10-04-2015 at 01:45 PM.

  10. #70
    Quote Originally Posted by GRAMMY View Post
    Thanks Paolo, but that presentation post was a duplicate. It was already posted by U2FP staff earlier today. LINK

    Thanks for subscribing to the U2FP Science and Advocacy Blog and being so anxious to follow along behind all of the wonderful outstanding work being done on the issues of paralysis by U2FP and being so excited about sharing our work with the community on our behalf! You're a devout follower, so stay tuned and keep following the super U2FP team to learn more about worldwide efforts taking place in the area of paralysis research and our various advocacy measures being championed by fantastic paralysis community leaders! However, I'll be sure to post the presentation announcements and information here at the CareCure forum for you when it comes available because double postings won't be allowed here at the forum and it causes extra work for the moderators also. Our U2FP Working 2 Walk video library presentations are not part of this registration information thread for signing up to attend the meeting posted months ago. (The registration phase and meeting are over now so people wouldn't be looking for the new video presentation information from W2W2015 here.) The correct title on the above presentation was actually called "Confessions of Amateur Activists". (There were 3 advocates involved in this presentation at Bethesda, MD.) We'll have more paralysis information you can follow along with in the coming days and weeks at the blog and find in the various areas of this forum that will contain many presentations you can begin learning from. Keep checking back frequently for them here at the CareCure forum where you'll find they're already posted after being automated off the U2FP Science and Advocacy Blog at WordPress. Enjoy!

    Sorry for the double post. Moderators can remove it. Hope it didn't hurt.

    I thought it was a good presentation so I posted it here hoping more people would have seen it.
    In God we trust; all others bring data. - Edwards Deming

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