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Thread: It sure is frusterating with all the good things that seem to have been announced

  1. #11
    Quote Originally Posted by Chaz19 View Post
    What would that be?
    I'll post the articles and information when it's made public at the SCI Research blog and make a separate thread at this forum if I can remember to stop by here. It wouldn't be appropriate nor fair to the general public for it to be disclosed in this type of thread on the internet...this is the last place anyone would look for information of that type.
    Last edited by GRAMMY; 04-11-2015 at 08:42 AM.

  2. #12
    Quote Originally Posted by Curt Leatherbee View Post
    And then nothing seems to become of them. I had hoped maybe Epidural Stimulation might help me, it sounded promising, but seems I never hear anything about it anymore. There have been so many other things too that never panned out. It is such a complex complicated thing for CNS healing sometimes it seems nearly impossible. I have exercised hard all 34 years I've been Paralyzed including FES since the year 2000 yet I've never seen any type of recovery. I've never seen anything with anybody else either personally, just read about things like how much better the four in the epidural trials got but never really seen any evidence it really happened. Very frusterating indeed. It's very easy to destroy Central nerves though SCI but seems impossible to ever get them back again.
    I'm really looking forward to the Epidural Stimulation treatment. It'll come soon!

  3. #13
    Quote Originally Posted by GRAMMY View Post
    I'll post the articles and information when it's made public at the SCI Research blog and make a separate thread at this forum if I can remember to stop by here. It wouldn't be appropriate nor fair to the general public for it to be disclosed in this type of thread on the internet...this is the last place anyone would look for information of that type.
    Grammy, does it have something to do with the epidural stimulator, or something new?

  4. #14
    I said I'm speculating.

    I don't have special connections. So I can guess. According the Acorda's website, they have the enzyme listed in their research section. http://www.acorda.com/products/resea...chondroitinase

    So what is your motive for saying you have special info?

  5. #15
    Quote Originally Posted by Chaz19 View Post
    I don't have special connections. So I can guess. According the Acorda's website, they have the enzyme listed in their research section.
    Acorda has actually had their pre-clinical research on Chondroitinase listed on the internet for sale to other pharmaceutical companies for years. I ran onto the listing and saw it for myself. I thought it had been discussed here long ago. The Spinal Research group will be the ones to bring the research forward (if it makes it through all the necessary steps)...

    I have no "ulterior motives" for saying that some important information may be coming within a couple months. It's too early for anyone to become overly disheartened according to the chatter I'm hearing... If you think it's time to throw in the towel, so be it. I'm aware of an enormous amount of special info but also am not allowed to make public announcements on everything I'm involved in, working on or made aware of. There's no bad mojo intended when I speak out, but if you feel otherwise, feel free to ignore the input.
    Last edited by GRAMMY; 04-11-2015 at 10:00 PM.

  6. #16
    Quote Originally Posted by Chaz19 View Post
    I said I'm speculating.

    I don't have special connections. So I can guess. According the Acorda's website, they have the enzyme listed in their research section. http://www.acorda.com/products/resea...chondroitinase

    So what is your motive for saying you have special info?
    Don't worry, it's not you

    How is the cure map going? I think it was a great idea, if you want to go forward with it I would be happy to help a little if I can.

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

  7. #17
    And then the warlord of hot air arrives to dig a spur in. . .
    Last edited by GRAMMY; 04-12-2015 at 10:24 AM.

  8. #18
    Quote Originally Posted by paolocipolla View Post
    Don't worry, it's not you

    How is the cure map going? I think it was a great idea, if you want to go forward with it I would be happy to help a little if I can.

    Paolo
    Thanks Paulo. It's currently on hold. To be honest I was told that it was of little value by people who I respect so…I felt like I tried, and will again this summer.

    I welcome all collaborators, currently I am on some very potent intravenous antibiotics. I will circle back when I can better explain the roadmap etc. I appreciate the morale boost.

  9. #19
    Quote Originally Posted by GRAMMY View Post
    And then the warlord of hot air arrives to dig a spur in. . .
    I greatly respect your contributions to community. I look forward to them. They have helped and educated me.

    It is prolly me, but I don't understand your intentions to write on a message board that there is some helpful information coming, that you know about this information – but will not share this information.

    Many Scientists and others have done this in the past from Dr. Davies to Dr. Kiersted (sic) to prominent foundations. It is dangerous for those who need hope to survive.

    I hope this news fulfills the vacuum left behind by others.

    In regards to Paolo- Am I missing something? I don't understand why you would find humor in someone complimenting my efforts to provide a curemap to our community.

  10. #20
    Senior Member lunasicc42's Avatar
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    Quote Originally Posted by Chaz19 View Post
    I greatly respect your contributions to community. I look forward to them. They have helped and educated me.

    It is prolly me, but I don't understand your intentions to write on a message board that there is some helpful information coming, that you know about this information – but will not share this information.

    Many Scientists and others have done this in the past from Dr. Davies to Dr. Kiersted (sic) to prominent foundations. It is dangerous for those who need hope to survive.

    I hope this news fulfills the vacuum left behind by others.

    In regards to Paolo- Am I missing something? I don't understand why you would find humor in someone complimenting my efforts to provide a curemap to our community.
    She is probably under some disclosure agreements
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