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Thread: Is it the right way?

  1. #1

    Is it the right way?

    Hey guys!

    I´m new here and I want to start a new thread because I want to know how do you think about the way the clinical research take place right know in the world.

    I´m an ASIA A T6 and I was injured in september 2011 and I´m just wondering how you guys deal with the fact that in one part of the world you hear of a success in the field and in the other part of the world they say no way forget it.

    I think a major problem is the fact that every individual has a different injury.....
    What do you guys think is the biggest problem in finding a cure for EVERYONE??
    Not only for a small population in the SCI community...

    Please let me know and thank you!!

  2. #2
    Quote Originally Posted by KK11 View Post
    Hey guys!

    I´m new here and I want to start a new thread because I want to know how do you think about the way the clinical research take place right know in the world.

    I´m an ASIA A T6 and I was injured in september 2011 and I´m just wondering how you guys deal with the fact that in one part of the world you hear of a success in the field and in the other part of the world they say no way forget it.

    I think a major problem is the fact that every individual has a different injury.....
    What do you guys think is the biggest problem in finding a cure for EVERYONE??
    Not only for a small population in the SCI community...

    Please let me know and thank you!!
    Good question. I can certainly give you my take of what it's like in the UK.

    We're in the middle of a paradigm shift. Like with any paradigm shift you have a spectrum of attitudes towards Cure. Within that spectrum you will have clinicians, SCIs and researchers with disparate views, hopes and expectations for a Cure. Part of that disparity is certainly down to the complex nature of spinal cord injury and the multitude of outcomes and secondary complications that accompany it. Clinicians develop practising styles and protocols based on what is the hottest issue in their day-to-day work - not on what they hope or foresee in the future.

    Many top clinicians will face very different day-to-day operational challenges meaning that Cure can be low down on their list of priorities. That doesn't mean they are against it, but rather it is not on their agenda. And don't forget, in most cases clinicians tend to spend the bulk of their time working with acute and sub-acute SCIs. So you can understand why they may "seem" the most conservative voice in the "Cure" chain. And to compound this further, the clinicians are often the only interface to the SCI Community. So you can end up with a skewed perspective of Cure depending upon the nature of your clinicians.

    As an SCI, having access to researchers working on Cures is not easy. We're lucky to have forums like CareCure where information can be shared freely. And we're also fortunate that annual symposiums such as Working2Walk give the Community a chance to listen and talk to researchers.

    Ultimately it will come down to a fearless minority of clinicians, SCIs and researchers that will help move the paradigm along through evidence-based studies and of course appropriate funding/resources. This minority is the group we need to support with gusto.

    The more conservative elements of the field will gladly jump aboard when the time is right for them.

  3. #3
    Quote Originally Posted by KK11 View Post
    Hey guys!

    I´m new here and I want to start a new thread because I want to know how do you think about the way the clinical research take place right know in the world.

    I´m an ASIA A T6 and I was injured in september 2011 and I´m just wondering how you guys deal with the fact that in one part of the world you hear of a success in the field and in the other part of the world they say no way forget it.

    I think a major problem is the fact that every individual has a different injury.....
    What do you guys think is the biggest problem in finding a cure for EVERYONE??
    Not only for a small population in the SCI community...

    Please let me know and thank you!!
    I have followed the various "cure" trials and treatments. You need to ask a lot of questions. Anybody charging 10s of thousands to inject yu is suspect in my mind. My acid test is waiting for a treatment subject to be on TV cartwheeling across the stage. The reality is there will be a need for clinical volunteers until a successful treatment is found. The requirements here in the US are a high bar but I still feel they do produce the least possible risk.
    There are very good scientists working on several different approaches. They may disagree about the mechanism but none should be ignored unless they are reckless moving into human trials or as is often the case claiming they have a working treatment. I personally do not feel any have YET proven to fix much of anything.

  4. #4

    "Success where?"

    Quote Originally Posted by KK11 View Post
    Hey guys!

    I´m new here and I want to start a new thread because I want to know how do you think about the way the clinical research take place right know in the world.

    I´m an ASIA A T6 and I was injured in september 2011 and I´m just wondering how you guys deal with the fact that in one part of the world you hear of a success in the field and in the other part of the world they say no way forget it.

    I think a major problem is the fact that every individual has a different injury.....
    What do you guys think is the biggest problem in finding a cure for EVERYONE??
    Not only for a small population in the SCI community...

    Please let me know and thank you!!
    "Success?"

    Where on Earth doctors are restoring, regenerating, regrowing the spinal cord in a human beings and having success?

    Show me the papers!

    The successful papers!

    Ti
    "We must overcome difficulties rather than being overcome by difficulties."

  5. #5
    Whe Cares. Just maximize yourself to be in shape for when/if it happens.

  6. #6
    Quote Originally Posted by Patrick Madsen View Post
    Whe Cares. Just maximize yourself to be in shape for when/if it happens.
    Patrick, you clearly care by repeatedly visiting this forum and piping up with your one-dimensional party line! Yaaaaawn.

    If we don't care this forum may as well not exist and we may as well not bother advocating for a Cure, end these ridiculous conversations about accelerating translational and clinical research and stop wasting our money by donating time and money. Why bother with any of it eh?

    Our (the Community) motivation drives the field. That is a fact. Without that motivation a Cure will NEVER materialise.

  7. #7
    Senior Member
    Join Date
    May 2010
    Location
    Chesapeake, VA
    Posts
    589
    I honestly believe that the fact that every injury is unique is a major factor in why there is not a cure. If you pool 20 people with T6 ASIA A injuries, you will find that they nerve damage is different in each of them. While the result may be comparable, the nerve damage is unique. One of the biggest problems is that in order to test treatments, they have to find matching injuries to do their blind testing. Spinal Cord injuries are unique and the accepted methods of conducting trials does not really work for this.--eak
    Elizabeth A. Kephart, PHR
    mom/caregiver to Ryan-age 21
    Incomplete C-2 with TBI since 3/09

  8. #8
    What are you talking about. you clearly don't know where I am on cure/care nor the my life of dedicating myself to SCI issues. I'm for a cure as much as anyone, in fact maybe more so. I'm stessing that many of the new injuries lack the motivation to maximize their potential with what they have left.

    Sure I push Care, without Care we wouldn't be living long enough or healthy enough to take advantage of the Cure. Care has given us new technologies and first responses, much longer and better healthoutcomes.

    Where has our Community driven the field? Do you mean the Chris Foundation with their million dollar salaries; The Rick Hansen Foundation, which I was a part of in the beginning, with their outrageous salaries and no communicaton?

    I trust if there is ever a lineup for a cure they will be taking those who "cared" enough to make themselves ready for it when it came vs. those who just cried your one line of Yawning about it. This is a two part senario, there can't be a Cure without Care. For myself, I'd rather be ready for it by maximizing my potential like I have in the last 40 yrs and be ready, as it seems to be, to live a long healthy life from a chair if it doesn't happen.
    Last edited by Patrick Madsen; 02-27-2013 at 10:03 PM.

  9. #9
    Quote Originally Posted by Patrick Madsen View Post
    What are you talking about. you clearly don't know where I am on cure/care nor the my life of dedicating myself to SCI issues. I'm for a cure as much as anyone, in fact maybe more so. I'm stessing that many of the new injuries lack the motivation to maximize their potential with what they have left.

    Sure I push Care, without Care we wouldn't be living long enough or healthy enough to take advantage of the Cure. Care has given us new technologies and first responses, much longer and better healthoutcomes.

    Where has our Community driven the field? Do you mean the Chris FOundation with their million dollar salaries; The Rick Hansen Foundation, which I was a part of in the beginning, with their outrageous salaries.

    As far as Yawning, you can go Fuck yourself.
    You said "Who cares" to a newbie who asked an open and honest question. Just more Patrick Madsenisms - hence the yawn. And yes, that term actually exists here on CareCure Patrick.

    PS Those orgs you cite do NOT represent the Community. They think they do but they don't. I'm glad you acknowledge your mate Rick's worthy salary though.

    As for the "go f*** yourself comment".....I'd love to.

  10. #10
    Funny, never heard that term before and not sure how to take it. You're right I was out of line.

    Perhaps it's time for me to take a break.

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