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

  1. #71
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    Smile Leo's Plan B

    OxSquidy,

    I agree with the organization but an organization has a definitive life cycle. First comes the ideas followed by the entrepreneur spirit, the creative cycle. Leo's Plan B is the answer we have all been looking for. It is a logical focused movement to turn the agenda of these foundations into "Cure Today" by delivering a powerful and constant message from this community. Please keep working on organizing us in today’s world but remember there are an awful of old school folks here like me that will need to be brought up to speed. Be patient.

    Again, I feel that the total number of these organizations will be staggering and their united voices translate to political power. Imagine a list of over, say three hundred organizations/foundations signing on to a "Cure Today" pledge to be presented to Congress and the President. Imagine these foundations getting your news letter about who is ready to go to clinical trial and urging them to be supported.

    We need to keep discussing this novel approach to driving the cause and to create a buzz here on CC. I have seen and been part of great ideas here on CC the have crashed and burned quickly. But this is the real deal and we must keep pushing it. Right at this moment Chaz is working on the master list. We need this information first. We need to quantify the numbers and then spread this info across the threads. We need to let the community know that there is a way to push the time table.

    Leo, this is a great group and maybe they become the foundation that we measure all other by. The may very well be the standard, lets discuss them some more.

  2. #72
    Spreadsheet: http://bit.ly/chronicSCI
    Document: http://bit.ly/chronicSCIdoc
    Team contact: http://bit.ly/chronicSCIcontact


    Great thoughts folks. Let get this list together. I've tagged 12 or so. I marked the checked in red on the doc and moved data to spreadsheet. It is a good place to begin.

    I'm slow with my quad hands. I'll try to pledge at least three of five a day. Who is in?

  3. #73
    Quote Originally Posted by bostondad View Post
    OxSquidy,

    I agree with the organization but an organization has a definitive life cycle. First comes the ideas followed by the entrepreneur spirit, the creative cycle. Leo's Plan B is the answer we have all been looking for. It is a logical focused movement to turn the agenda of these foundations into "Cure Today" by delivering a powerful and constant message from this community. Please keep working on organizing us in today’s world but remember there are an awful of old school folks here like me that will need to be brought up to speed. Be patient.

    Again, I feel that the total number of these organizations will be staggering and their united voices translate to political power. Imagine a list of over, say three hundred organizations/foundations signing on to a "Cure Today" pledge to be presented to Congress and the President. Imagine these foundations getting your news letter about who is ready to go to clinical trial and urging them to be supported.

    We need to keep discussing this novel approach to driving the cause and to create a buzz here on CC.
    I have seen and been part of great ideas here on CC the have crashed and burned quickly. But this is the real deal and we must keep pushing it. Right at this moment Chaz is working on the master list. We need this information first. We need to quantify the numbers and then spread this info across the threads. We need to let the community know that there is a way to push the time table.

    Leo, this is a great group and maybe they become the foundation that we measure all other by. The may very well be the standard, lets discuss them some more.
    great idea. i also think we need to keep it public and connected to cc.

  4. #74
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    Just added five

    Chaz did a bunch tonight and I did five.
    Only takes a few moments....please chip in and add one.

    Go to these sites for searching.
    earch spinal, paralysis, spinal cord etc. They'll pop right up

    http://www.guidestar.org/

    www.irs.gov/app/pub-78/

  5. #75
    Nobody gives a dam. They have no idea what its like to live like this. They just want keep their jobs.
    oh well

  6. #76
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    kenf,
    You are right, there are many who may not care but we need to make them care and to support the ones that do. No one likes to be watched. It makes them uncomfortable. Wouldn't you like to make someone who doesn't care uncomfortable?

  7. #77
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    I suggest that the leaders of this thread get together via PM and decide exactly what they want to accomplish and want the others do and then put all the necessary information in one post or maybe even as the first post in a new thread with another good title, still keeping this thread open to develop additional ideas and support. I think the leaders should ask others to specifically commit to help. Maybe the price of admission to the group should be that the participants must have participated in DollarADay. As mentioned in other posts in this thread, a basic mission should be to develop a substantial constituency and find a way to prove that you have it. You can't have influence without a proven constituency.

  8. #78
    Bostondad, have you contacted the Reeve Foundation? It might be a good idea for you and others to make meaningful contacts and let them know what we want (avenues to a cure and what they are exactly up to). The bottom line is to get those who are supposed to be vying for a cure to stick to their advertisements and make progress, if any progress is occuring, available to the public. Our job is to follow the projects, evaluate, and to question the forward direction of the project. By the way, what do you know of the Miami Project?

    Thanks'
    T.J.

  9. #79
    Oxsquid- After thinking about the group process, I decided to remove my name from the group spreadsheet. In my experience I've noticed that if a group forms too early many people will feel excluded from joining a group. All of a sudden it becomes an in group versus outgroup. I've been around long enough to feel like an 'outsider' and I would want anyone else to feel excluded from any process by forming any group to early.

    If we take care of the present moment, we take care of the future. Little by little I will add to the database and if everyone does it maybe in a few weeks we can have something substantial to talk about.

  10. #80
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    Quote Originally Posted by bostondad View Post
    Please keep working on organizing us in today’s world but remember there are an awful of old school folks here like me that will need to be brought up to speed. Be patient.
    I can't organize if you guys don't give me your hand. If we're all aware that we need to do some things before start working, then we're in the good track. But that's what i am afraid of...people starting to give its thoughs and ideas, and no way to track them and assure its execution.
    I've been working in some projects with human resources and nothing is done untill everybody knows where he/she is at and have a group awareness
    Quote Originally Posted by bostondad View Post
    Imagine a list of over, say three hundred organizations/foundations signing on to a "Cure Today" pledge to be presented to Congress and the President. Imagine these foundations getting your news letter about who is ready to go to clinical trial and urging them to be supported.
    I'm totally up to that, and even more than that. We'll achieve that and more.

    Quote Originally Posted by bostondad View Post
    We need to keep discussing this novel approach to driving the cause and to create a buzz here on CC. I have seen and been part of great ideas here on CC the have crashed and burned quickly.
    That is what i am afraid of. Great ideas are not enough, great management is crucial. This will fail too if we keep trying to work things out the way we are doing right now.

    Quote Originally Posted by swh2007 View Post
    I suggest that the leaders of this thread get together via PM and decide exactly what they want to accomplish and want the others do and then put all the necessary information in one post or maybe even as the first post in a new thread with another good title, still keeping this thread open to develop additional ideas and support. I think the leaders should ask others to specifically commit to help. Maybe the price of admission to the group should be that the participants must have participated in DollarADay. As mentioned in other posts in this thread, a basic mission should be to develop a substantial constituency and find a way to prove that you have it. You can't have influence without a proven constituency.
    I'm trying to contact some of you guys. A forum is definately NOT a way to make this happen. We have to communicate through other media and will keep CareCure updated of every action we take and open for discussions.

    Quote Originally Posted by Chaz19 View Post
    Oxsquid- After thinking about the group process, I decided to remove my name from the group spreadsheet. In my experience I've noticed that if a group forms too early many people will feel excluded from joining a group. All of a sudden it becomes an in group versus outgroup. I've been around long enough to feel like an 'outsider' and I would want anyone else to feel excluded from any process by forming any group to early.

    If we take care of the present moment, we take care of the future. Little by little I will add to the database and if everyone does it maybe in a few weeks we can have something substantial to talk about.
    Okay, i'll put that on hold, i think you are right.

    For all the people who is not getting involved yet (this thread has 2800 non-unique views)...
    Think about what you can do and what you are actually doing. We can speed things up more than you can imagine.
    Everytime somebody writes in this thread is giving great information and brilliant ideas, don't keep yours spinning in your head. Take the chance, get involved.

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