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Thread: Scientist receives $1.8M defense grant from Kessler Foundation for spinal cord injury

  1. #21
    Quote Originally Posted by c473s View Post
    I am not so much critical of the modalities but rather on more research dollars. There are several modalities that are good for bone density/ circulation/ digestion. Gravity is our friend used properly. Sometimes we are guilty of tweaking research into a "new" study to no better theraputic end. I question regularly whether a trial or study actually moves the bar of outcomes. My personal bias is towards the best apparent use of the dollars. Since I believe any cellular intervention may be years away it does make sense to pursue health and wellness along with functional improvement.

    I have viewed the exoskeletons with some skepticism but can tell you the ten people using them here in trials fully embrace what they are doing for them.
    I simply would like to see also many news of 1.8 millions going to a lab that is working to cure chronic SCI.
    Do you have some examples?
    I mostly see millions going to "non cure" SCI research. This way a cure will never happen, some people will feel a little better, but SCI will kill them anyway even just because sitting itself shorten our lives even if one day we could prevent 100% pressure sores, UTIs etc. (which I think may take longer that finding a real cure).

    BTW Life expectancy is still significantly lower than normal especially for quads and I don't see how we can really get it close to normal without a real cure:
    https://www.nscisc.uab.edu/PublicDoc...cts%202013.pdf

    Where is the right ballance between pursuing health and wellness along with functional improvement remains an open question, but i believe from the present situation we need to move more toward cure.
    I say this also considering that I don't see how we will get more research money unless a billionaire gets SCI and will want a cure.

    About exoskeletons I have a different experience. I know several people that have been using it for a while as part of a rehab program, but all abandoned it after a while.
    I also know a person who has her own rewalk, but when she started to get busy with her life drifted away from it and now almost never use it.

    I have an other open question: when people with SCI donate for research they do it for cure research or welllness research?
    I believe mostly for a cure, but it's just my guess.

    Paolo
    In God we trust; all others bring data. - Edwards Deming

  2. #22
    Quote Originally Posted by paolocipolla View Post
    I simply would like to see also many news of 1.8 millions going to a lab that is working to cure chronic SCI.
    Do you have some examples?
    I have an other open question: when people with SCI donate for research they do it for cure research or welllness research?
    I believe mostly for a cure, but it's just my guess.

    Paolo
    I see donations to facility level research to try to move functional improvement. The "cure" type of research happens in University and big pharma labs. I wish I had a better picture of that but believe it is primarily funded by big pharma and some (not near enough) government dollars. Wise may be the exception with his work in China but again I do not know factually what all the sources are.

    The Miama Project raises a good bit from private sources for cure. Other foundations raise for both. There is a smaller pool of NIH funding these days. It is frustrating and will take large dollars to move through trials from the lab.

    Grammy may have a feel as well

  3. #23
    I moved off-topic/personal posts to Members Only.

    Please be respectful.
    Last edited by Jim; 04-27-2014 at 07:50 PM.

  4. #24
    Quote Originally Posted by c473s View Post
    I see donations to facility level research to try to move functional improvement. The "cure" type of research happens in University and big pharma labs. I wish I had a better picture of that but believe it is primarily funded by big pharma and some (not near enough) government dollars. Wise may be the exception with his work in China but again I do not know factually what all the sources are.

    The Miami Project raises a good bit from private sources for cure. Other foundations raise for both. There is a smaller pool of NIH funding these days. It is frustrating and will take large dollars to move through trials from the lab.

    Grammy may have a feel as well
    @c473s Your description is pretty accurate I believe. After the reduction in NIH funding due to sequestration awhile back, it caused a set back on many critical experiments that were underway. Even though around 30 billion dollars goes to NIH funding, once a small share of that is distributed to the approx. 1,000 researchers within the SCI group, its a huge loss. The field is still reeling from the changes that have had to take place (slow down and fewer experiments/researchers) in addition to the lack of money for new investigators wanting to enter the field. It will take large dollars to move from the lab into human trials via biotech and pharma.

    I also think people get a little sidetracked on arguing over rehab vs. regeneration. We need both to be supported in every way possible. Squirting a stem cell or pharmaceutical at the injury isn't going to be a cure nor is rehab alone. As advocates, we must be supportive of bringing both forward each time that dollars present themselves for the millions of people throughout the world that await a therapy. Many foundations have begun working on key pieces of a therapy and the research involved for chronic paralysis. A lot of focus in the funding arena has changed over the past decade with the community being educated to the fact that they're chronic and requesting more chronic experiments. The NIH and numerous foundations are getting that message from the community so you'll see calls specifically for chronic projects. With the entire NIH, there's more focus for the research areas in general to be working towards patient focused translation because of the tightened budgets.

  5. #25
    Quote Originally Posted by GRAMMY View Post
    ....
    I also think people get a little sidetracked on arguing over rehab vs. regeneration. We need both to be supported in every way possible.
    ...
    Does that mean, for ex. that U2FP would economically support a research project like the one in this thread in the furture?

    Paolo
    In God we trust; all others bring data. - Edwards Deming

  6. #26
    Quote Originally Posted by GRAMMY View Post
    ..
    ..
    With the entire NIH, there's more focus for the research areas in general to be working towards patient focused translation because of the tightened budgets.
    Cutting funding can be a very healty thing if it leads to rethink priorities and results just in cutting wasting.
    This is why I have said in the pasts that funding to SCI research should be cut in some circumstances such as the NJ SCI commission.

    Paolo
    In God we trust; all others bring data. - Edwards Deming

  7. #27
    Quote Originally Posted by paolocipolla View Post
    Does that mean, for ex. that U2FP would economically support a research project like the one in this thread in the furture? Paolo
    HUH? How could I make futuristic predictions about your silly hypothetical meanderings on what others may or may not think, want or do? You're being absurd... Does that mean for ex., YOU were speaking and representing the entire population of Italy when a Norway countryman called you a nay-sayer clown? c473s asked GRAMMY for an opinion so GRAMMY gave it to c473s as requested, it's nothing more than that...
    Last edited by GRAMMY; 04-29-2014 at 06:35 PM.

  8. #28
    Quote Originally Posted by GRAMMY View Post
    HUH? How could I make futuristic predictions about your silly hypothetical meanderings on what others may or may not think, want or do? You're being absurd... Does that mean for ex., YOU were speaking and representing the entire population of Italy when a Norway countryman called you a nay-sayer clown? c473s asked GRAMMY for an opinion so GRAMMY gave it to c473s as requested, it's nothing more than that...
    Ok, so it was just your personal opinion, thanks for the clarification... and thanks for the "silly"

    Paolo
    In God we trust; all others bring data. - Edwards Deming

  9. #29

    Smile

    Quote Originally Posted by paolocipolla View Post
    Ok, so it was just your personal opinion, thanks for the clarification... and thanks for the "silly" Paolo
    You're welcomed. I wasn't sure how else to describe clowning activity other than "silly"...

  10. #30
    Quote Originally Posted by GRAMMY View Post
    You're welcomed. I wasn't sure how else to describe clowning activity other than "silly"...
    "Clowning activity" isn't very kind of you cosidering I have always been kind with you I believe..

    Do you still think what you wrote in this blog post? I liked it very much. I am asking as I had the impression you have changed a bit your mind (which would be ok).

    http://spinalcordresearchandadvocacy...sci-community/

    I liked also this comment:
    "Thank you so much for this article. It is my truth – there is nothing on the care issue that can upgrade my quality of life like a return of function, elimination of pain and spasticity and TOTAL INDEPENDENCE will do, i.e. a CURE! Thank you."

    Please be nice with your answer, I am not being ironic or sarcastic, I am just respectfully asking a question.

    Paolo
    In God we trust; all others bring data. - Edwards Deming

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