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Thread: What is being done by us to achieve a cure?

  1. #11
    Senior Member 0xSquidy's Avatar
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    I agree with your replies and i supposed there would be advocacy groups and stuff. But isn't that weaker than a huge "group".

    I dont wanna sound funny here but what i am thinking about reminds me of greenpeace. Why don't get organized like that and "break" into politicians discutions and make some noise? Some real noise.

    We have to make sure that people know we don't want to be like this anymore and there's a way, there's a route we can take. I'm not talking about flying or impossible things like that. NOISE

    I'm the rookie here but i dont like the idea of being sit down and waiting for a miracle meanwhile criticizing politicians and whatnot.

    We can speed this up, nobody's gonna do it for us!

  2. #12
    This is a difficult population to mobilize. It's out of sight, out of mind with politicians-and many of us take our lives in our hands when we travel. We're not a wealthy people either.

    I spent months studying really effective health advocates from the past. The AIDS activists, particularly ACTUP, had a lot to teach. They also left oral histories of their movement, basically roadmaps.

    But they were motivated by a death sentence. They were concentrated geographically. They were mobile until they became bed-ridden. They had members that specialized in law, pharmaceuticals etc. They had ppl working at NIH, CDC. They're wealthier, on average.

    So you can learn a lot from what they did, but it's about impossible to duplicate for the sci population.

    Unity is a problem. You'd be surprised how many "care" advocates feel threatened by ppl that push for cure research. It's a ridiculous division imo, there is room for both.

  3. #13
    Guys and gals, you aredoing it. We're talking and that's the beginning. I told an individual thru a private message that we as a group need to address blogs that come out woth a supposed finding such as University of California San Diego, that annoounced a findsing with rats. I contacted them and they were nice enough to contact me and I told them I would follow up with them at vaiorus times to see where the next step is and follow them with others to get facts and follow thru. In that case, I was told they would see what movements were created with the rats and if successful , they would move to larger animals to check for safety. My thinking is that should not be tooo hard to do to see if movement improvemnet is created with the rats. I'm expecting them to let us know and not create a laboratry empire for experiments with no movement forwad. We can all do this and work as a group to let this industry know we are watching, waiting, and expecting ansewres. We can do this as a group and let them know, yes we are vicitms, but also activists to see something come to fruition. Let's keep talking, forwarding information on things we find, and act as a group to let them know we are watching.

    T.J.

  4. #14
    Senior Member 0xSquidy's Avatar
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    We all have a death sentence. If we don't speed this up, our death sentence is gonna knock to our doors and we will be still in this chair, carrying pee bags, missing sex feelings and wondering "what if..."

    Seriously, what's wrong with SCI community? Why people don't even bother to get into this thread and share his/her mind?
    Why don't we focus our angry to this goal? It's not only for us but the people is being injured everyday. If we bite this with strenght and motivation we can live that moment, we can see this happening.

    Yes, we can promote fundings, keep the research community motivated and injured community well informed (no more fairy tales). We can get TV/politician's/AB's attention and turn up the volume of what's about a SCI and force people to make their minds about ethical or funding issues. We can move this mess!!

    I'm really alone in this though? If i am, screw you.

    We will be deserving this condition when we don't fight for its solution ladies and gentleman.

  5. #15
    Senior Member Leo's Avatar
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    Quote Originally Posted by 0xSquidy View Post
    We all have a death sentence. If we don't speed this up, our death sentence is gonna knock to our doors and we will be still in this chair, carrying pee bags, missing sex feelings and wondering "what if..."

    Seriously, what's wrong with SCI community? Why people don't even bother to get into this thread and share his/her mind?
    Why don't we focus our angry to this goal? It's not only for us but the people is being injured everyday. If we bite this with strenght and motivation we can live that moment, we can see this happening.

    Yes, we can promote fundings, keep the research community motivated and injured community well informed (no more fairy tales). We can get TV/politician's/AB's attention and turn up the volume of what's about a SCI and force people to make their minds about ethical or funding issues. We can move this mess!!

    I'm really alone in this though? If i am, screw you.

    We will be deserving this condition when we don't fight for its solution ladies and gentleman.
    0xSquidy, your frustration tells me the painful truth is sinking in.

    Now if you think your the only one to feel this way your wrong.

    I've written on this issue here at CC countless times. Please go back and read some of my past rantings if you want to have close to an idea as to why.

    You only beat your head against a wall so many times before you realise you need to go to plan B.
    http://justadollarplease.org/

    2010 SCINet Clinical Trial Support Squad Member

    "You kids and your cures, why back when I was injured they gave us a wheelchair and that's the way it was and we liked it!" Grumpy Old Man

    .."i used to be able to goof around so much because i knew Superman had my back. now all i've got is his example -- and that's gonna have to be enough."

  6. #16
    Senior Member 0xSquidy's Avatar
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    Well, at least that makes the two of us. You have more than 3 thousand posts... what is this wall we are bumping into? And what's the B plan you found is the only road to take?

  7. #17
    OxSquidy - I feel your frustration and I am with you 100%. But I am now beginning to see that "mobilising the masses" is one heck of a challenge. We are fairly new to this game and the pain of SCI is still very very raw. Our able bodied instincts are still there and our dreams almost always "star" our able bodied selves.

    But, if you put yourself in the shoes of a long-term sufferer you can imagine how much hope has diminished over the years and that the priorities are adjusted just to live life they best they can. If you take a look at some of the older threads on the cure you can see very similar oscillations of hope and despair almost 10 years ago. It is our human nature to protect ourselves from hurt and disappointment and senior sufferers have had to supress the hope and get on with things. Also, dont forget that many senior SCI sufferers have grasped fantastic opportunities and forged excellent careers through their suffering and any kind of threat to these careers could create a "sub-conscious" resentment or patronising sympathy towards "naive", "deluded" junior sufferers like us with our false hope for a cure.

    Something special needs to happen to bring back the hope in the long standing sufferers. They are the ones we need on board. They have the power and experience we need. Disparate voices, research projects, animal studies and disparate charities are great but we need convergence. That's probably why I mentioned "Superman" earlier. Christopher Reeve was a global icon and an inspiration to all - even to people who have no experience of SCI at all. When he spoke, the world listened and I think SCI sufferers were united behind him. We need something special like him.

    I wish that we as a community had known a little bit more about the storyline of Cameron's Avatar a bit earlier. I feel there was a fantastic opportunity there to capitalise upon it's global popularity to raise awareness that we need some juice for the home straight with regards to a cure.

    Morning rant over and out for now.

  8. #18
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    We can't expect the rest of the world to care if the sci community doesn't care.

    Maybe CC is mostly just a social forum with a scientifi bent, and some of us expect it to be something it doesn't want to be, i.e., a voice for the sci community.

  9. #19
    Oxy' we dan do this; human trials and follow up with pointed questions to those in labs spouting some finding and then never hearing fron them again. Write Sens. Harkin and Specter. I've asked what they are doing at this point and what has been accomploished. Hey, it's a start. We all must follow Wise's trial; for results (no excuses) and expediency. Hey I can't keep up the exercise with no improvement. Anyother suggestions, let's hear it.

    T.J.

  10. #20
    Senior Member Leo's Avatar
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    Quote Originally Posted by 0xSquidy View Post
    Well, at least that makes the two of us. You have more than 3 thousand posts... what is this wall we are bumping into? And what's the B plan you found is the only road to take?
    The brick wall is the ignorance and self serving attitudes of the people in power of the current SCI Organizations. Curing paralysis is not in the top 4 or 5 of their priorities.

    Google spinal cord injury

    You'll find countless links to organizations that want to help you live better with your sci and on their sites no mention of clinical trials or cure advocacy. Brick Wall!

    Plan B is what I said in an above post.

    more later
    http://justadollarplease.org/

    2010 SCINet Clinical Trial Support Squad Member

    "You kids and your cures, why back when I was injured they gave us a wheelchair and that's the way it was and we liked it!" Grumpy Old Man

    .."i used to be able to goof around so much because i knew Superman had my back. now all i've got is his example -- and that's gonna have to be enough."

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