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Thread: ***Unite(D) to Fight Paralyses.***

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  1. #1
    Senior Member Moe's Avatar
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    ***Unite(D) to Fight Paralyses.***

    I've been thinking a lot about it lately.

    A SCI survivor can never fix his/her own cord no matter how much he/she knows how to do it. Not even successful researchers can't fix their own cord if God forbid they turn SCI. this goes for the bashing "know it alls"

    Can SCI's ever join forces to make things happen? Trolling and negativity doesn't seem to work. Can't depend on dishonest org's raising money in our namesake for own profit. Will continue to wait for things to happen on their own?

    Any thoughts how to add that "D"?

    It worked for Gays
    It worked for Marijuana
    It worked for women’s rights
    ??? does it make any sense? years are passing by in the meantime....

    10 million sci's exists? What’s preventing to join forces that could potentially impact the world to move things forward and get done quicker?
    Last edited by Moe; 08-20-2018 at 01:38 PM.
    "Talk without the support of action means nothing..."
    ― DaShanne Stokes

    ***Unite(D) to Fight Paralyses***

  2. #2
    Money and what is done with it seems to be the biggest challenge that I see. I agree advocacy and activism are needed, but money is what will make things happen.

    I see many problems with a lot of the foundations and other organisations setup to find a cure, this list includes:
    * Spreading resources too wide and thin - They try and fund all research from basic science -> acute -> chronic. I would suggest that the majority of people with SCI want a focus on chronic.
    * Run by non-SCI people - The majority of the people making the decisions do not have an SCI, how can they speak for us? Worse, some people are making huge salaries from it.
    * Don't take anything beyond research/trials - They won't fund anything commercial, even if it helps get something to us.
    There are many other problems, these are just the ones at the top of my mind.

    Now before I get shot down, I know this doesn't apply to all foundations and all the people who work for them, but the ones getting the big money do tend to have these problems.

    I've been thinking for a while it would be great if there was a foundation that was focused solely on chronic cures with a commitment to get them to market.
    Where every dollar someone put in gave them a vote as to how the money would be used. (Maybe with caps on the voting rights to stop abuse)
    Commercial investments (into SCI cures) would be allowed, with profits going back into the foundation to create a snowball effect.

    Basically anything that is needed to get a cure into our hands would be fair game, not held back by admin, loyalty, agendas and conflicting interests.

  3. #3
    Senior Member Moe's Avatar
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    I hear you niallel, but money and foundations are already out there and intent is already questioned and will always be even if a new foundation opens... I was thinking more as a "unity" approach among fellow sci's getting exposed out there in huge groups fighting. right now we're transparent and non existent to the majority. A non-violent protest, getting out there in large numbers in events, public places, ralleys.... get the word out... get the media focused on us...
    "Talk without the support of action means nothing..."
    ― DaShanne Stokes

    ***Unite(D) to Fight Paralyses***

  4. #4
    Strange as it sounds, there is little commonality of interest within the spinal cord injury community. High quads are different than low quads, high, medium and low paras have their own issues and all these groups disassociate themselves from each other. There is no there, there.

  5. #5
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    Quote Originally Posted by gjnl View Post
    Strange as it sounds, there is little commonality of interest within the spinal cord injury community. High quads are different than low quads, high, medium and low paras have their own issues and all these groups disassociate themselves from each other. There is no there, there.
    This is frustratingly, maddeningly true. Low paras and incompletes who race wheelchairs are constantly lobbying to remove handcycles from marathon events because they don't like that the handcycles (who are scored separately) go faster even though many handcyclists don't have the function to race wheelchairs (lower back muscles needed). So SCIs want to discriminate against other SCIs who have less function than they do.

    It just goes to show that a life-changing injury doesn't make you a reasonable person.
    T3 complete since Sept 2015.

  6. #6
    Senior Member Moe's Avatar
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    Quote Originally Posted by gjnl View Post
    Strange as it sounds, there is little commonality of interest within the spinal cord injury community. High quads are different than low quads, high, medium and low paras have their own issues and all these groups disassociate themselves from each other. There is no there, there.
    I noticed that... but fair to say that everybody would share the same goal after the fight? no race or sex discrimination in the army... they all fight and give all they got as a team to survive and win. Each one on their own most likely get shot one by one...
    "Talk without the support of action means nothing..."
    ― DaShanne Stokes

    ***Unite(D) to Fight Paralyses***

  7. #7
    Quote Originally Posted by Moe View Post
    money and foundations are already out there and intent is already questioned
    Thats exactly my point.

    If the community owns and runs the foundation with EVERYTHING shared and out in the open, then we are in control of our direction.
    The average person who donates to SCI doesn't know exactly what there money was used for, and doesn't know of the progress or results until a paper is published years later.

    It sounds like you want to build a group of activists, I'm not saying there is anything wrong with that but it doesn't put anything into our hands.
    You are going to be trying to get someone else to do something, and lets be honest the world is obsessed by "Me Too", womens pay, LBGQTXYZ+ etc.

  8. #8
    Senior Member Moe's Avatar
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    Quote Originally Posted by niallel View Post
    Thats exactly my point.

    It sounds like you want to build a group of activists, I'm not saying there is anything wrong with that but it doesn't put anything into our hands.
    You are going to be trying to get someone else to do something, and lets be honest the world is obsessed by "Me Too", womens pay, LBGQTXYZ+ etc.
    no obsession of any kind, nobody's doing anything for me neither.
    "Talk without the support of action means nothing..."
    ― DaShanne Stokes

    ***Unite(D) to Fight Paralyses***

  9. #9
    Quote Originally Posted by Moe View Post
    no obsession of any kind, nobody's doing anything for me neither.
    I don't follow.

    If you think activism is the right way I understand.

    There is nothing to stop us all going on both paths.

  10. #10
    UFP is my Amazon Smile charity, more people should sign up.

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