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Thread: I want combo trials, and now!!

  1. #221
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    Quote Originally Posted by thehipcrip View Post
    2. Hit the Quote button in the bottom right corner of the post you want to quote, then highlight and delete whatever extra content you don't want to quote.
    Thank you! I can figure out option 2. I think.

  2. #222
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    Quote Originally Posted by 0xSquidy View Post
    I agree with Leif when saying that CC moderators and other staff could be more active in the cure field. This could give us some edge, specially for the potencial reader of CC. But i don't see why anybody should leave no forum. Lynnifer if you felt left out by anything that i said, i'm truly sorry, it wasn't my intention.

    There is something extremely wrong going on here when people in the SCI community shows his/her disbelief and discourage others in working towards a cure and no one says a word. If that is accepted and considered correct, that's flawed thinking in my opinion. They don't even realize the real consecuences of that, it's more harmful that you may think, it's so destructive.

    People will get eventually tired because this is a hard mountain to climb. But it doesn't help running into negative people and naysayers who, just because they have lost their hopes, may find reasonable to discourage others to keep up with this work. We are all in the same boat.
    Wheather you feel strong to fight or not, everyone here will be expecting to get a treatment if it's shown to be effective, am i right?
    Then please, just make up your mind. Do you feel like want to participate into anything that speeds up this tedious process? Hump in! There are lots of things to do and everyone can do their part, EVERYONE.
    You don't feel like doing this for whatever reason? That's fine but please, don't discourage others, don't be just a naysayer for the sake of it. People is trying to change things here, either help or get out of the way. I don't blame people who don't want to get involved and i'm serious with this.

    I have read somebody saying to get used to the wheelchair and move on, like if fighting for a cure was like being stuck with the situation. I mean, what is that? I'm 100% used to my wheelchair and i'm ready to die with it. But I enjoy lots of things because some other people back in time cared about treatments, about improvements... advances that we all take advantatge from. In a personal prespective, i find some negative attitudes so selfish and insulting for the people to come.

    If we keep doing the same things with the same attitude... the same results we will get. Is this that difficult to understand?


    @swh2007: I've always found the family/patient support in the rehab and hospitals one of the best things to do. And that is the approach i will be applying here ASAP, when we have the fundrising dept ready to work.
    I do agree that discouraging posts are destructive, especially when we are trying to find the CC members who want to build something to assist a cure, but we have to be respectful to others or we will just keep getting side-tracked into fighting. If we can find the group of CC members who support a cure and build that group, then we will have a group that generally is not discouraging.

    I'm not suggesting that CC won't always have a place to bitch and moan and be destructive about potential cures, but I personally would like to see CC have a place to do something positive and I hope we are allowed to have such a place. And, as to the places that are discouraging and destructive, I hope those people will realize that what they say is being read by people who still need and have hope and, among others, by many people with or without SCI who are helping or might be considering helping us and those who will follow us.

    This is very hard stuff and maybe there are some CC members, very important ones who have the experience and knowledge to make a real difference, who are hesitant to step into the fray. To those I say post what you think. What can it hurt?

  3. #223
    Quote Originally Posted by Wise Young View Post
    Paolo,

    There is enthusiastic support of SCINetUSA in many states. For example, I recently came back from a fundraiser held in Austin (TX) by the Lone Star Foundation. The excitement and the interest in getting clinical trials going is not only palpable but manifested by significant donations that will support the trial at Brackenridge.


    Wise.
    So do you think that by the time the trial at Brackenridge will be ready to start they will have raised the money needed?
    The airport runway is the most important mainstreet in any town - Norm Crabtree

  4. #224
    Look, why waste time in deciphering why people are skeptical. There are a multitude of reasons and even legit. Discuss the reality of now and the future and the discussion will take on reality. Reality changes as does generations change. We are now at enournous chages in stem cell therapy and potential cures. There is no doube about it. The news is never ending and will contiue. It's like rehashing the "lost 8 years" due to Bush's ineptmess. It's past and the accumulanation of progress is amazing. Whether here in the states or elsewhere, progress is being made by leaps and bounds. I for one see the future as more meanigful than the past. This is year is good and will get better. Please concentrate on new advances and let the rest of us see the progress being made. It is truly amazing. I'm and engineer and have seen amazing progression of things that obslete the past. I believe this is happening now in spinal cord treatment.

  5. #225
    Quote Originally Posted by Wise Young View Post

    Finally, I want to comment that while things may seem to be moving slowly in ChinaSCINet, they are actually moving much faster than industry trials and especially considering our small budget. We are recruiting subjects for the phase 2 trials in Hong Kong and I hope that we will have 20 subjects soon. In the meantime, we are working very hard optimizing the shipping and testing of the cells. We are also awaiting for word from the Chinese government for permission to start the trial in Kunming. I hope that we will receive such permission in May.

    Wise.
    I have the feeling that they are (in a very nice way) trying to screw up things. If I were you, next time I go there I would invite out for dinner some people in power, get them drunk & then ask some questions to find out what's really going on
    The airport runway is the most important mainstreet in any town - Norm Crabtree

  6. #226
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    Quote Originally Posted by lynnifer View Post
    ... never mind ...

    I have submitted my resignation as moderator. I have also cut all ties to CareCure on my Facebook page. Sorry, but it's time for me to move on.

    Tired of the snarky, snide and unnecessarily rude comments on here. Good luck all.
    Lief ..... now how was that helping here??

    It was uncalled for, and damaging.

    Lynnifer, I hope you don;t leave over all this, resign as a mod if necessary, so that you don;t have to put up with his attitude, but I hope you don't feel it necessary to leave cc entirely. It will leave a large hole.

    Wise, please take note of this.
    T7-8 since Feb 2005

  7. #227
    Quote Originally Posted by paolocipolla View Post
    I have the feeling that they are (in a very nice way) trying to screw up things. If I were you, next time I go there I would invite out for dinner some people in power, get them drunk & then ask some questions to find out what's really going on
    Ahhh, there's nothing like a cold pint of truth serum ;-)

  8. #228
    Senior Member rdf's Avatar
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    Leif, you need to apologize. Man up.

    Lynnifer, don't let his remark sour your taste for CC. You're an original, and admired by most everybody.
    Please donate a dollar a day at http://justadollarplease.org.
    Copy and paste this message to the bottom of your signature.

    Thanks!

  9. #229
    Quote Originally Posted by cpaul View Post
    BTW: I thought CDRPA was supposed to have passed and the $$$ for a clinical trial network was already in place. For a long time the cry was we need money. At the recent Spinal Cord Workshop the cry now is "we have money but no Clinical trial network" What gives?
    The network is in place thru NACTIN for the CDRPA and has been in place for years.
    Every day I wake up is a good one

  10. #230
    Quote Originally Posted by Fly_Pelican_Fly View Post
    The mission needs to be clear and simple. FUND CLINICAL TRIALS FOR SCI CURE. The same message for the public and politicians. Simples!
    FPF- Couldn't agree more. We need to narrow our focus. I'm not sure if anyone would be willing to work on this idea. But let's say we wrote a letter to our community. Those of us who are active in the cure forum could come up with a basic consensus of what we would like to do and then address the rest of the 36,000 members.Maybe we should start a petition all of the various SCI organizations if we can find a common goal.

    Lynnifer- Please stay. I've always appreciated your opinion and perspective. We need you here.

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