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

  1. #21
    Senior Member Tbone57's Avatar
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  2. #22
    Quote Originally Posted by Chaz19 View Post

    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.

    You're questioning my intentions again? Seriously? Yes, it prolly is just you but I'll go into more detail so you can understand. It is not a crime to tell the community that there is hopeful information coming in the future so I don't understand why you think I have to defend my intentions in order to post here. I reserve the right to state my opinion and share what I feel is appropriate on the public message board in spite of your obvious disapproval or assumptions that I have some kind of ulterior motive or conspiracy of ill intentions that you are having difficulty understanding. I don't know what there is to not understand or what exactly you're trying to insinuate. I've posted on this forum for many years and have never had someone question my "intentions" for posting anything on this message board before. I always believed I was more than straightforward with my opinions and thoughts. I responded to your speculation in a polite manner and explained why I thought it may be inaccurate when you mentioned Acorda and CDRF as a pairing. I did not intend to hurt your feelings by disagreeing with those speculations or off hand guessing. So, what exactly is YOUR intention for posting on this message board?

    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.

    Really? I am not an academia scientist and have never claimed to be, so I guess I fall into your "other" persons category. I am an independent advocate that works hard at learning and listening to what is happening in the spinal cord injury and neurological field and sharing information. I attend academic conferences, W2W symposiums, rehabilitation meetings and visit labs. I spend an enormous amount of time writing emails and reading abstracts and requesting research information. I speak out on my own behalf and my opinions are my own. I don't believe I remember ever being described as someone too dangerous for those needing survival hope though. That's definitely a new wrinkle.

    Indeed I have signed non-disclosure agreements with various biotech companies and academia. I have had the privilege to read their research work long before it is sent in to a journal for publication and visit about results as data is coming in. I frequently offer advice and my own opinion on experiments being conducted. (Not all of my observations have been well accepted but they are respected and my intent is clearly understood). I frequently question experiments being run with government funding with the proper authorities. I volunteer on the advocate research committee and the scientific committee at two non-profit SCI foundations in addition to other projects that I don't need to go in to. I don't owe anyone a blow by blow of everything that crosses my desk. I have no right to disclose the work or happenings of other people I collaborate with, nor my personal advocacy efforts. If someone does not understand trust, respect and mutual collaboration efforts, I won't bother to explain it. Suffice to say, I will not betray the confidences shown to me by those working on curative therapies to help SCI along side of me.

    If anyone considers my postings of threads from my research blog as being dangerous for those wishing to survive, there's no need for them to read any of it. They should be able to exercise their own dignity of risk for themselves and just adjust their settings here and put my name on their "ignore" list. I frequently am the first blogger to post new information as it's being released since I'm often given a publication date in advance. However, I do not violate embargo rules just to entertain people on a message board with wild speculations and hearsay. I wouldn't want to be considered a danger for someone that is too mentally delicate to handle SCI research info because that's pretty much what a lot of what my life revolves around.

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

    I don't worry about identifying and fulfilling other's previous vacuums. That would be an enormous waste of my time and I have no such interest or goal to fix what someone else may have left behind somewhere. I've always forged my own advocacy path, work relationships and will continue to do so in the future as well as the here and now. I can only work with what is before me.

    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.

    As for Paolo...? Yes, you're certainly missing something. You've obviously missed all of these identical slams he puts in threads towards me. I can assure you he didn't arrive out of the blue to post in a frustration thread started by Curt where you and I are talking back and forth just to suddenly compliment your cure map you started working on some 18 months ago. It's seriously a bit late and totally out of character. (His first sentence was not a compliment for you, it's the same old jab he posts for me when he interjects himself in a conversation I'm involved in with someone else. He never bothers to change it up so that's why I laughed at his same old boring MO. He sticks with his original each time. He didn't appear suddenly in Curt's thread for complimenting and working for Chaz. I'm sorry to hear you're under the weather, best of luck to you.)
    Last edited by GRAMMY; 04-13-2015 at 05:25 PM.

  3. #23
    Yes, I remember Brain-gate very well, infact I had a job interview with a company called Cyber Kinetics that was behind Brain-gate in Massachusetts around 7 years ago or so and was reminded of it recently when Dr. Young sent me a reply email I sent him at that time 7 years ago and just got the reply back about a question to him about the interview in the past couple months, took a while, lol. Like I said, things move slow
    Quote Originally Posted by Chaz19 View Post

    Here is some actual news. Accorda and the Reeve Foundation celebrating. I'd guess maybe something w/ch'ase in the works since Accoda has the patent. I'm speculating.

    Hey Curt, I find it incredibly frustrating. The number of false starts and special announcements that have led to nothing is mind-numbing. Remember Brain-gate?
    "Life is about how you
    respond to not only the
    challenges you're dealt but
    the challenges you seek...If
    you have no goals, no
    mountains to climb, your
    soul dies".~Liz Fordred

  4. #24
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    I am glad Grammy keeps us informed on so much new and emerging information coming from so many sources. I wish she or someone would post that "something" was cheap, easy and available that would cure SCI and all health issues. Maybe someday that will happen. Until then I am thankful for the time and energy that Grammy puts in keeping herself and us informed. Many self-appointed advocates advocate for their own ego rather than for our education and benefit. Those egotists stand out by means of snide remarks that don't really inform or benefit anybody. Generous offers like "I'll help out a little, if I can" years after the request for help was issued are clearly disingenuous.

  5. #25
    very well put nrf and Chaz19. most come here the information but in recent years this forum has been taken over by those with useless or needless comments.
    "I'm manic as hell-
    But I'm goin' strong-
    Left my meds on the sink again-
    My head will be racing by lunchtime"

    <----Scott Weiland---->

  6. #26
    Quote Originally Posted by ineedmyelin View Post
    very well put nrf and Chaz19. most come here the information but in recent years this forum has been taken over by those with useless or needless comments.
    The activity is called Gumping...Forrest Gumping. It's everywhere on the internet.

  7. #27
    Quote Originally Posted by Chaz19 View Post
    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.
    My offer was 100% sincere.
    People are free to interpret what I post the way they like.
    From my perspective you should just wonder what do you have too loose going forward with the map?
    I don't think is going to hurt, so the worst thing that can happen is that it could be useless.. personally I think it might be a good thing, but I can't say for sure...
    Of course it's going to be time consuming for you, so depending on how much time you have to dedicate to work it out you may decide if going forward or not..
    In God we trust; all others bring data. - Edwards Deming

  8. #28
    Quote Originally Posted by GRAMMY View Post
    All in it's own time... I believe there will be some very important news coming to light within the next couple of months.
    So by mid June we will know what you are talking about. I can wait. Hope is really good stuff.
    In God we trust; all others bring data. - Edwards Deming

  9. #29
    Quote Originally Posted by paolocipolla View Post
    So by mid June we will know what you are talking about. I can wait. Hope is really good stuff.
    Ok gumper, get out your stop watch.

  10. #30
    Senior Member Tbone57's Avatar
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    Jan 2012
    Staten Island, NY
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