View Poll Results: I believe that clinical trials are necessary for curing spinal cord injury:

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  • Yes

    52 92.86%
  • No

    4 7.14%
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Thread: Next decade offers promise for treatment of spinal cord injuries

  1. #71
    Quote Originally Posted by Wise Young View Post
    Tom,

    It is too early to give up. We have been making progress.
    • Clinical trial networks. Many people told me that there was no way that we could ever set up a spinal cord injury clinical trial network in China. There has never been one and where were we going to get the money? Chinese doctors hate each other and don't like to collaborate. All that was true and, despite that, many of the top spinal cord injury doctors in China are working together. A SCINetUSA is starting. We may even have a SCNetEurope and SCINetIndia by next year. We are starting trials in China and will soon do so in the United States. I don't know where we are going to get the money but we are starting anyway.
    • Stem cells are coming together. Despite nearly a decade of suppression, stem cell research is alive and kicking in the United States. We know a lot more about pluripotency. Recently, our laboratory discovered how to stop teratoma formation in the spinal cord. We are solving all the nitty gritty problems that are necessary, including how to ship and transplant the cells safely, how to do combination therapies, and how to evaluate the spinal cords. By the way, our CN102B will the be first study that will have done diffusion tensor imaging of the spinal cord and the effect of cell transplants on these images. We are developing the first surgically controlled cell transplant protocol.
    • Lots of therapies are waiting in the wings, ready to go into trial. These include Nogo antibody, the rho blocker Cethrin, the nogo receptor protein, and chondroitinase. There are many cells that need to be evaluated, including bone marrow cells, neural stem cells, and induced pluripotent stem cells differentiated to neural stem cells. Lithium and Schwann cells have been reported to be more beneficial than either treatment alone in animal studies. Decorin is being studied by Stephen Davies and if he shows that it is effective in chronic spinal cord injury, it can go quickly through phase 1 in Colorado and then phase 2 and 3 in ChinaSCINet and SCINetUSA.

    Wise.
    Really?? Very insteresting read about SCInet over here.
    Please, post more info when you have it
    -Ramps in buildings are necessary, but it would be usefull to have another ones for people (mind/heart).....

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  2. #72
    Senior Member rdf's Avatar
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    I think Dr. Young does and has done far more than his fair share in trying to cure spinal cord injury. The man travels thousands of miles every month and puts in ungodly hours. He is starting to sound discouraged. Sure, life with SCI is hell, but when those with SCI start attacking the few people in the world who are giving their all to cure us, then that's heading down the road to self-destruction.

    You might wake up one day and find out there is no longer a CC website. You might wake up and find you've driven Wise Young away. Please, the man has done more for us than anyone else in the field of neuroscience. He has devoted decades to our cause. He is not the enemy, nor are his counterparts at other institutions.

    Dr. Young has spoken in the past of how he'd like to one day study other areas of science. If you all keep it up, that day might come a lot sooner than anyone expected. Where would you all go to bitch and moan if you didn't have this website to do it on? Get your shit together. Do your part. Don't rely on 'someone else' to do what you are possible of doing to advance a cure for SCI. It's clear the science to cure us is here. The problem lies elsewhere.

    Call my post ass kissing if you will; I call it reality.
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  3. #73
    Senior Member DA's Avatar
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    Quote Originally Posted by Wise Young View Post
    Let me start from bottom up.
    • ... you know MS is probably easier to cure than SCI... Right?
    - MS is likely to be more difficult to cure than SCI because it requires therapies to stop the progression and therapies to restore function. Most of the effort in MS right now is devoted to stopping progression of the disease. Restoration of function will require regeneration. The demyelination is associated with axonal loss so that even when remyelination occurs, recovery is not complete. Be glad that you don't have MS. It is a pretty bad disease.
    Being a mid-quad is bad too. the problem is all sci is judged by the life of a low para. you dont see that kind of smirking with MS by doctors or the public.

    • What has MS gotten from their research?
    They have gotten a dozen therapies that more or less will stop progression of the disease. The interferon ABC therapies have slowed or stopped intermittent relapsing MS most of the people. Some therapies may be working for the chronic progressive MS. They now have the first drug Ampyra that improve function.
    When you get something back, one will work harder for more. when you get NOTHING back, like a slot machine built not to win, one walks away. i put time and effort in our sci slot. many here put more time and more effort than I, only to never win....anthing. TIME TO CHANGE MACHINES.

    •the sci community is discouraged from hope and the drive to find a cure endlessly.
    Are you going to blame doctors and scientists for your lack of hope? Please, look at what you have been writing... throwing scientists off the Victoria Falls? Please don't blame that on doctors and scientists.
    HELL YES I PUT SOME BLAME ON THEM. when ever we talk about curing sci, doctors are there smirking and laughing. who will the average joe believe, a desperate quad or a doctor? who will congress or the president believe, a desperate quad or a doctor.
    you may have forgotten, but we had this conversation 10 years ago. i dared you to call a doctor, without telling them who you are, then ask about a cure for sci. that dare still stands today...try it, then you will see what we are up against.


    pisses me off that you would just dismiss away all many have done. you have no clue to how difficult it was for me, a quad, to travel cross country to san diego.
    I don't dismiss all that many and you have done. You and I have been together at meetings and I am grateful. However, I don't think that you support spinal cord research or NIH on CareCure. If you do, please say so. You just have press some keys on your keyboard to do so. You don't have to send any money or travel anywhere to say that you support research. Your support of research is not apparent from your posts.
    I dont support the bull crapping around. i will not ever put my head down and allow the system to screw me. we know if how the fda and nih cherry pick research not based on science.

    Let me make sure that people understand what I am talking about when I say NIH funding and why I am upset by your statements. NIH distributes about $30 billion a year for biomedical research in the United States. About 70% of it goes in the form of grants that scientists compete for. That competition is very tough. About 10% of grant applications are being funded and probably over 100,000 scientists write applications for about 10,000 new grants being funded every year. Within NIH, the deck is stacked. Each institute has a budget and certain diseases in their portfolio. NINDS has spinal cord injury and it has about 400 neurological diseases. Spinal cord injury has to compete with all the other neurological conditions, and as you have heard, is not faring particularly well. There are probably only about 50 or so spinal cord injury research grants. The deck, however, is stacked to some extent. NIH does have special programs to encourage research in certain areas. So, for example, there are Parkinson's centers, head injury centers, and other programs that are set aside from the normal free-for-all competiton. The Christopher and Dana Reeve Paralysis Act would have given us such a program but, even though we got the act passed, we never stuck around and pushed for the appropriations for this program. So, now, more than a year after the passage of the CDRPA, there is still no CDRPA program at NIH. We need every scientist that we can encourage to apply to the NIH for spinal cord injury grant funding. Every grant every scientist gets helps the field. It doesn't help for you to say silly things like throwing them off the Victoria falls if they believe the cure will take more than a decade to arrive.

    Wise.
    I post nih funding of sci. 2/3's was not applied towards curatives research. nih is a bunch of able body people who do not care about any of us. i would bet the nih would not let us pick what to fund when it comes to sci. ofcourse nih knows better, which is why someone should toss their ass's off a cliff.

  4. #74
    Senior Member DA's Avatar
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    Quote Originally Posted by rdf View Post
    I think Dr. Young does and has done far more than his fair share in trying to cure spinal cord injury. The man travels thousands of miles every month and puts in ungodly hours. He is starting to sound discouraged. Sure, life with SCI is hell, but when those with SCI start attacking the few people in the world who are giving their all to cure us, then that's heading down the road to self-destruction.

    You might wake up one day and find out there is no longer a CC website. You might wake up and find you've driven Wise Young away. Please, the man has done more for us than anyone else in the field of neuroscience. He has devoted decades to our cause. He is not the enemy, nor are his counterparts at other institutions.

    Dr. Young has spoken in the past of how he'd like to one day study other areas of science. If you all keep it up, that day might come a lot sooner than anyone expected. Where would you all go to bitch and moan if you didn't have this website to do it on? Get your shit together. Do your part. Don't rely on 'someone else' to do what you are possible of doing to advance a cure for SCI. It's clear the science to cure us is here. The problem lies elsewhere.

    Call my post ass kissing if you will; I call it reality.
    i attacked the system and many who run the system, stupid. this was not an attack on dr young. althougth dr young does defend this sorry ass system.

  5. #75
    Wise, you can expect this kind of reportory and I know you do. Look at all the people that are counting on you and want your trials to be a success. We all have the frustration of living without walking and belive me it is cruel. Once we get a few successful clinincal trials behind us, the moemntum will grow.

  6. #76
    Quote Originally Posted by Isildur View Post
    Really?? Very insteresting read about SCInet over here.
    Please, post more info when you have it
    You may want to contact OxSquidy

  7. #77
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    RDF,
    You said it well. We all wish it was yesterday. Well its reality and it is what it is. We just need to think positive. I wish all of you a very Blessed Easter Sunday. Enjoy!
    Best Regards,

  8. #78
    Quote Originally Posted by Wise Young View Post
    ........
    In my opinion, what we need more is honest and open communication with the community by scientists. Scientists should be giving the community their honest opinions and people should stop complaining when scientists don't tell them what they want to hear. If a scientist says that it is going to take years or even decades, that is what they think.

    ............

    Wise.
    Wise,

    here is how I see this communication problem.

    Scientist should not say their opinion in a way that will push away people with SCI from supporting research & clinical trials.
    If you say to a person with SCI that is gonna take decades you can't expect him/her to support SCI research & clinical trials.

    And also a researcher can't say & should not say that is gonna take 5 years or 10 years unless he/she has a crystal ball as you said before.

    A scientist should say the truth without guessing around as then people will come back to ask for consistency & if he can't keep his word his reputation will be spoiled etc.

    The truth I see is that - Animal study have shown that it will be possible to cure SCI in humans, but we can't say how long it is gonna take to develop therapies for humans & make them available. For sure the more support people with SCI give to scientist the sooner it will happen.

    I am sure we may find better words, but my point is that researcers & clinicians should say things in a way that people with SCI feel the responsability & the possibilty to contribute to make a cure happen sooner.

    At the same time researchers should not say things that will demotivate people with SCI from activaly contributing to make a cure happen. This does not mean manipulating the truth, instead it means say the truth in a way that get people support.

    This is the concept of Public Relations that BTW was invented by the US Army during WW1

    Unfortunatly I have heard more then ones SCI reserchers talking without having a clue about the effect of thier words on people with SCI. Some reserchers should simly not speak & delegate some professional comunicator to talk to press & people.

  9. #79
    Quote Originally Posted by DA View Post
    Being a mid-quad is bad too. the problem is all sci is judged by the life of a low para. you dont see that kind of smirking with MS by doctors or the public.
    In many ways it is tougher being a low/mid para than a mid quad. I got six weeks of rehab and then it was "okay Tom, back to 60 hour work weeks. We will pay for your catheters (after you meet your deductible) and buy you a chair every 5 years" and that is it. The expectation is you do everything a walker does. There are heroic people on this site who are quads and work full time without a PCA or family help, but that is not the expectation of society (and insurance companies).

  10. #80
    Senior Member lunasicc42's Avatar
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    leif. No response... Typical. So quit refererencing Bush... It's over
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