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

  1. #21
    Sorry for the misunderstanding, I hadn't picked up what you meant.

    I don't mean to harp on about money, but for completeness if you were a billionaire you could pay a team of people to do all the regulatory work, expedite the additional testing they wanted and build the labs and clinics to the codes that were needed.

    Having said that, apart from how long it takes and the extra hurdles the regulatory bodies introduce, what do you propose that we should be pushing for?

  2. #22
    UFP is my Amazon Smile charity, more people should sign up.

  3. #23
    Quote Originally Posted by Moe View Post
    ... Researchers do what they do best: RESEARCH. They are not lawyers toward Government rules, even if they did, they should be focused on their work instead. That's why I find our visibility and do our part is important to fight these obstacles.
    ...
    Thank you for pointing that out. I agree 100%.

  4. #24
    Senior Member Moe's Avatar
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    Quote Originally Posted by t8burst View Post
    UFP is my Amazon Smile charity, more people should sign up.
    t8burst, I appreciate and respect your good intent, I encourage you visit their website what the money is raised for... Raising 80k to make a movie, exposing a few sci's to whoever watches or cares about the movie.... A joke and a disgrace in my point of view. Anybody can make/edit movies for free with an iphone, free publishing and monetized on youtube too btw... yes, I know, I'm an ungrateful prick. They want to get paid for the movie, why nobody's volunteering to make it you bunch of hypocrites? Unite to fight my ass, missing the "d"

    (Gays and lesbians can legally same sex marriage nowdays, they didn't acheve it doing gay movies....)

    I vision a better impact such as fellow sci's grouping in UNITED HUGE historic numbers publicly worldwide. ITS FREE, Exciting, can even beat the isolation and make new friends...

    brb work...
    Last edited by Moe; 08-21-2018 at 05:49 PM. Reason: spelling and format
    "Talk without the support of action means nothing..."
    ― DaShanne Stokes

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

  5. #25
    Completely agree here Moe and I’d also move to a next level and get into action. And I think there’re many more who read this and agree as well but that’s it, they don’t bother to express their thoughts from fear of criticism. Come on people, let’s all grow some balls and United might have a chance to make a difference.
    Vindex, nice post!

  6. #26
    Senior Member lynnifer's Avatar
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    All of the former are gone from CareCure except for Curt. They protested at DC for the first year or two of u2fp ... there are photos. Ironically HRC was there ... I always thought if she was voted in, perfect time to solicit those memories and she is a fan of healthcare for all .. unfortunately that did not happen.

    This was around 2006ish.
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    Last edited by lynnifer; 08-21-2018 at 06:50 PM.
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  7. #27
    Senior Member Moe's Avatar
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    One thing for sure, members fighting other members just to feed ego is getting ridiculous, so what if the other one is misinformed...get over it, focus on the real fight. Just because someone has sci it doesn't obligate to be a full informed neurosurgeon for fuck sakes. even if, good luck fixing your cord yourself... fight together not each other you dummies, Owning a car does not obligate to be a master mechanic!!

    I'm ready to start a new approach, make peace, friendship to all fellow sci members for starters. we need groups recruited all over the world. OK we need to build good cases before the fight too, if fighting for regulations, they must be identified (what bill, code) regulations are written like the criminal code (page/chapter/paragraph number..) maybe the researcher or biotech can shed some light? Here's per example the CFR - Code of Federal Regulations Title 21

    Any other ideas brewin' ?
    Had a long day at work today, I'm still catching up reading the posts....
    Last edited by Moe; 08-21-2018 at 08:20 PM.
    "Talk without the support of action means nothing..."
    ― DaShanne Stokes

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

  8. #28
    Senior Member lurch's Avatar
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    Quote Originally Posted by funklab View Post
    The causes you list are all social causes. It takes no money to legalize gay marriage or decriminalize the sticky-icky, or give women the right to vote, and there are also no technological challenges to doing any of these.

    A SCI repair (cure is a silly term for fixing an injury) is technically impossible at the moment. People have ideas, but even if you had a hundred billion dollars today and devoted all of that to fixing your spine I bet your paralyzed ass would still be sitting in a wheelchair(albeit probably a much nicer wheelchair) 50 years from now.

    fixing a destroyed spinal cord in a living human isn?t some simple feat like splitting the atom or traveling to the moon and back safely, it?s complicated stuff. Curing cancer is much simpler than fixing a spinal cord, all you have to do is kill the bad cells instead of grow brand new three foot long neurons all wired ?correctly? to long atrophied muscles and peripheral sensory neurons.

    I don?t think any amount of ?uniting? could have brought about a cure to syphylis in the Stone Age, and when it comes to rebuilding the brain and spinal cord we?re just figuring out how to pound the first bronze spear-tips. If AI and technology continue to progress maybe we?ll have a true cure for chronic SCI in 200 years or so, but I wouldn?t hold my breath, it?s likely to be much longer.
    I don't claim to be the most scientifically informed person in the cure forum and I respect Funklab's opinion. However from what I have read the cure may be a lot closer than we think (at least in a technical) sense. In all other facets of the human body the body tries to heal itself. As is my understanding from recent developments the body WILL heal itself given a little push in the right direction. I really doubt that it is science that is holding us back.

  9. #29
    Quote Originally Posted by Moe View Post
    t8burst, I appreciate and respect your good intent, I encourage you visit their website what the money is raised for... Raising 80k to make a movie, exposing a few sci's to whoever watches or cares about the movie.... A joke and a disgrace in my point of view. Anybody can make/edit movies for free with an iphone, free publishing and monetized on youtube too btw... yes, I know, I'm an ungrateful prick. They want to get paid for the movie, why nobody's volunteering to make it you bunch of hypocrites? Unite to fight my ass, missing the "d"

    (Gays and lesbians can legally same sex marriage nowdays, they didn't acheve it doing gay movies....)

    I vision a better impact such as fellow sci's grouping in UNITED HUGE historic numbers publicly worldwide. ITS FREE, Exciting, can even beat the isolation and make new friends...

    brb work...
    Is U2FP the only party raising money for the Cure Map movie? Or is U2FP simply serving as one more venue to give the two people making the movie more fundraising exposure? What does U2FP actually raise money for? Where is the paper trail to back up your statement?

    U2FP has done a lot more than just this most recent project. Having been to many different neuroscience and SCI-specific meetings and conferences, I can confidently say U2FP does a far better job than any other organization that currently exists in getting ALL stakeholders - researchers, legislators, and people with SCI from the community, including those who are literally against a cure and only want to focus on care/accessibility - on the same page, and getting everyone moving in the necessary directions to work towards an actual cure.

  10. #30
    Thanks. There are other SCI based charities you can choose as your "smile" charity. I picked U2PF simply because it was one that I had heard of. Regardless of which charity, smile doesn't cost you anything and a portion of you amazon purchases go there. It's not a lot, but it can't hurt and it takes zero effort.

    Quote Originally Posted by Moe View Post
    t8burst, I appreciate and respect your good intent, I encourage you visit their website what the money is raised for... Raising 80k to make a movie, exposing a few sci's to whoever watches or cares about the movie.... A joke and a disgrace in my point of view. Anybody can make/edit movies for free with an iphone, free publishing and monetized on youtube too btw... yes, I know, I'm an ungrateful prick. They want to get paid for the movie, why nobody's volunteering to make it you bunch of hypocrites? Unite to fight my ass, missing the "d"

    (Gays and lesbians can legally same sex marriage nowdays, they didn't acheve it doing gay movies....)

    I vision a better impact such as fellow sci's grouping in UNITED HUGE historic numbers publicly worldwide. ITS FREE, Exciting, can even beat the isolation and make new friends...

    brb work...

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