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Thread: I want combo trials, and now!!

  1. #211
    Quote Originally Posted by Fly_Pelican_Fly View Post
    Leif, I take it you are not a people person? Calling people 'lazy butts' isnt going to help apart from alienating those who are already finding it difficult to soldier on with whatever little advocacy they are participating in. Maybe you are right about what needs to be done but you need to deliver the message in a more tactful way. Maybe you should leave the "motivational" speaking to others!

    FPF,

    if you will resist a few years in in the "battle fild" of the cure you will get tired of naysayers.

    What I have seen in tha past few years is that poeole with SCI that hope in a cure are just a few. Many of them loose hope a few years afrer they got SCI, they get use to SCI, get a Job, a girl/boyfriend etc..

    That is ok, what is sad is to see people once fighting for a cure that now became negative & try to feed with negativity the few who are strong enough to keep fighting until the end. I understand that, but it not good at all.
    If I will loose hope I will just go away from the "battle field" & let the others keep on with the battle instead of remaining there to be an obstacle for the "battle actions".

    If you are one of the few dedicating your life to contibuting to find a cure for SCI, you will soon get feed up with naysayers.
    The airport runway is the most important mainstreet in any town - Norm Crabtree

  2. #212
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    Quote Originally Posted by betheny View Post
    Sigh. Now the newcomers get a first-hand look at the reason the old advocates learned to stay a step away from CareCure. I was beginning to hope things had changed. Somebody always gets their feelings and opinions stomped on, be it through excessive enthusiasm, paranoia, secret agendas, personal vendettas or whatever. This puts a bad taste in my mouth and gives me deja vu as well.

    Lynnifer, you know you can resign as moderator and again enjoy the bliss that is the Ignore Function, right? I fully enjoy that feature that I wasn't allowed to use when I was a mod. Also, as a non-mod, you are once again allowed to defend yourself and your beliefs as opposed to rolling over and taking all the crap random jerks dish out. Believe me, it is glorious.

    Leif-What. The. Fuck? You're gonna sober up and regret that. There aren't enough good ppl for you to go around alienating the ones participating in the convo! And you know perfectly well that the mods work hard, for free, for all our benefit. By definition, there are no lazy butt moderators...if they were lazy, they'd keep their free time for themselves. And without mods, there is no CareCure AT ALL. All those potential advocates worldwide, gone, the day the mods give up. Think about it.
    First, I wish I could figure out how to highlight just a part of your post and respond to that only...how do you do that?

    Second, this is a chance to find out if CC is a place to advocate and work for a cure. So, I hope one disagreement doesn't give us the answer. If CC isn't the place, then so be it. You can tell me and others with an interest where to go (well, you know what I mean).

    Third, it's worth finding out whether CC can be a place to work for a cure. I know of no other place with 36,000 members and a nationally known doctor willing to participate in discussions on an everyday basis, and even if that number is misleading I know of no other place that almost always has 300 people with some connection to SCI viewing it. That alone represents a big oppurtunity that I think should be explored.

    And no I don't think that wheelchair makes your butt look big.

  3. #213
    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.
    Lynnifer,

    I use to love your optimism, your posts etc... I understand you have lost hope, it is natural as we had expectations that didn't became a reality.
    I know you have done so much in your life for the cure, so it is ok if you now take break.
    If there will be a cure soon enough you can have my place in the line if I am ahead of you :-)
    The airport runway is the most important mainstreet in any town - Norm Crabtree

  4. #214
    My two penneth,

    as Leif mentioned earlier and has done many times, we only need a small few to get involved with researchers, labs etc. This is not for everyone but it is up to that few, a SCI-led scientific voice/committee if you like, to make sure that their unbiased findings and progress is communicated to the global community through an accessible and trustworthy portal (possibly not CC) in laymans terms (cutting out the scientific jargon).

    Where we need the numbers is for funding raising and for a political voice. This is where the unity needed to be garnered. The mission needs to be clear and simple. FUND CLINICAL TRIALS FOR SCI CURE. The same message for the public and politicians. Simples!

  5. #215
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    Quote Originally Posted by thehipcrip View Post
    Going back to the idea of recruiting new CC members, it seems to me the obvious way is to make the various rehab centers around the country, and the people who work there, aware of CC so they can tell the newly injured about the site.

    For example, I started posting a while back at allnurses.com. That site has a forum for rehab nursing, and I promote CC there at any opportunity I get. There was also a thread a few months back in the general nursing forum called "What I Learned from My Quad Patient" in which I posted about CC. In response, several nurses wrote me that they were so glad I made them aware of this "incredible resource" and assured me they would tell all their SCI patients about it.

    With some targeted email and even snail mail outreach (e.g. sending a flyer about CC and asking that it be posted in patient areas and on staff bulletin boards (according to every nurse I've talked with/nursing blog I read, there's one in every women's staff restroom at health care facilities), we can start to reach some of the new SCI/Ds out there.

    Lynnifer, I'm sorry. You will be missed.
    One last post from me for a while....I think that's a great idea and a way to get to new SCIs in the early days through their families. I've learned through a different research/cure effort that if you get to a newly injured's family early in the process and help/support them, you will build a permanent, strong connection with the family. A great fundraising technique.

  6. #216
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    Quote Originally Posted by paolocipolla View Post
    Lynnifer,

    I use to love your optimism, your posts etc... I understand you have lost hope, it is natural as we had expectations that didn't became a reality.
    I know you have done so much in your life for the cure, so it is ok if you now take break.
    If there will be a cure soon enough you can have my place in the line if I am ahead of you :-)

    Ok so I lied about no further posting for a while--paolo this is very kind and thank you. It is ok to take a break, and that's why we need a CC cure group to keep things moving forward.

  7. #217
    Quote Originally Posted by paolocipolla View Post
    FPF,

    if you will resist a few years in in the "battle fild" of the cure you will get tired of naysayers.

    What I have seen in tha past few years is that poeole with SCI that hope in a cure are just a few. Many of them loose hope a few years afrer they got SCI, they get use to SCI, get a Job, a girl/boyfriend etc..

    That is ok, what is sad is to see people once fighting for a cure that now became negative & try to feed with negativity the few who are strong enough to keep fighting until the end. I understand that, but it not good at all.
    If I will loose hope I will just go away from the "battle field" & let the others keep on with the battle instead of remaining there to be an obstacle for the "battle actions".

    If you are one of the few dedicating your life to contibuting to find a cure for SCI, you will soon get feed up with naysayers.
    Paolo, I agree with you. Naysaying is frustrating and negativity only breeds negativity. But as Leif has mentioned before, waste no time on the naysayers as it will only drain resources. Lead through example and inspire.

    Many more pawns will fall by the wayside in the battle but many more will be born with the zest and exuberance to keep the Cure ball rolling - if and only if the roadmap is solid and of course if the battle-hardened Generals put their faith in the new generation.

  8. #218
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    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.
    Don't ask what clinical trials can do for you, ask what you can do for clinical trials.

    Fenexy: Proyecto Volver a Caminar

    http://www.fenexy.org (soon in english too)

  9. #219
    Guys, you're talking about leaving the naysayers berhind. Remeber, the ball is rolling for a cure or treatment, no matter what we do. It's important to concentrate on accomplishments that are occurring now and in the future. We will resurrect the naysayers and offer hope again to all. The ball is rolling, remember that, it is. Our focus on those advancements will offer hope to all, keep us motivated, and let those in the advances know we are watching. Our credibility is to acknowledge what is happening and what this means to us and future "victims". There is a new day adawning and I'm excited. And remember the FES cycle. I keep referencing it because I've seen first hand what it means to a friend of mine who has been in a chair, totally paralyzed for 11 years. It's thing s like this that offer hope to those who have lost hope. ADvancemetns are occurring and it's our job to make those advancement known to us all.

  10. #220
    SWH, to quote part of a post, do either of these things:

    1. Highlight, copy and paste the part of the reply you want to respond to into the Quick Reply text box at the bottom of the page. Highlight what you've just pasted again, then hit the QUOTE () button in the tool bar. Inside the open QUOTE tag, type in an equal sign and the name of the CC member who said what you're quoting (e.g. [ QUOTE=swh2007 ] but with no spaces between the content and the brackets).

    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.
    It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.

    ~Julius Caesar


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