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

[funklab]

If thats what you think, why are you reading this forum?

This is a fair criticism. I usually stay far, far away from the cure forum. I just woke up early this morning and I always browse the Care Cure homepage with the latest threads and this one piqued my curiosity and I wondered what Moe meant.

I normally try not to piss on people's parades (or hypothetical fantasy pride parades), and try to withhold what I consider rational thought from the usual overly optimistic cure forums. Some people need that glimmer of hope to keep breathing... for me it was easier to accept the fact that this is life now and it's never, ever going to change and move on. But perhaps the truth lies somewhere in between. In order to move on with my life I've had to completely reject the possibility of a cure, and while I think the scientific evidence and medical precedents are on my side, those who have had to completely believe in an imminent cure are not necessarily more unconsciously biased toward the possibility of a cure than I am against one.

Still I think the main criticism of my post (before I started getting all salty and ornery) is fair.

It's not as if people marching for us or waiving cripple flags or voting for constitutional amendments that say "Spinal cord injuries are officially the devil's work" is going to do anyone any good. It's a (thus far at least) insurmountable technical challenge, not an issue of social injustice.

There are no pride parades for teleportation or marches on washington for the immediate and complete funding of a time travel machine. Yet asking for these as yet impossible technologies is probably closer in nature to asking for an SCI cure than legalizing pot or letting gays bone each other without breaking the law.

If we look at a more comparable cause, Breast Cancer has been very big and raised tons of money (way more than SCI could ever feasibly raise) and have been in full swing for decades, and the result has been maybe a 10 or 15% decrease in overall mortality (and who's to say that wouldn't have happened anyway with improving imaging technology and increased screening). There's certainly nothing approaching a "cure" for all breast cancer on the horizon and pretty much all of us know someone who's had breast cancer.

But let me reign myself in before I go all crotchety-old-man on you fine folks again.

If you want to do something for a cure, great. Go get a PhD in neurobiology and do the research yourself... I'd certainly never fault anyone for pursuing science, regardless of whether or not you can find a cure, you're likely to stumble across something that makes someone's life better. Hell, you don't have to go that far, researchers are always looking for lab assistants, go volunteer your time doing the work, not trying to convince others to raise the money.

If you want to go out and organize to make lives better for SCIers everywhere, you should probably start by pushing developing countries towards starting to build accessible infrastructure or mass producing high end cushions to provide to global SCIers who's countries can't afford what we would consider proper SCI equipment. Organize for a single payer system in the US and I'll be right behind you, it will free up trillions in savings, some of which will almost necessarily filter back into basic science research furthering the cause of a cure. Write your senator to convince them that a hard cutoff for loss of Social Security, Medicare and Medicaid benefits is counterproductive and there should be a graduated system of benefits reduction as income increases, more disabled people will go back to work if they know their benefits won't be suddenly and precipitously cut off after they earn one dollar over X amount.

There's no grand conspiracy to keep us cripppled.

If you're going to fight for something, fight for something real. If you're going to organize, put your efforts toward improving real people's lives, not slightly improving pie-in-the-sky chances of a cure. I guess that was what rubbed me the wrong way, feeling like Moe was suggesting putting all this effort into trying to raise money and build public will for a cause that is unlikely to succeed in any of our lifetimes. There are more pressing issues in the world than an SCI cure. There are more pressing issues for SCIers than a cure.

I'm a romantic and a bleeding heart and I've also trained as an economist. I love a good protest and even a riot or two if it's for the right cause, but damn if it don't make my blood boil seeing such energy and passion wasted inefficiently on pointless endeavors.

[funklab]

Also, Moe, love the passion. But maybe (just maybe) a cure is shooting a little too high. Lower your sights to something a bit more realistic and I bet you could move mountains.

[Vindex]

I could not have said it better myself Moe, we are invisible at the moment. We vanished into thin air when Christopher Reeve died. I will try not to make my post long, I will try to be meaningful yet succinct as possible because writing and arguing is a waste of my time.

When I got injured, I decided that I must in fact go back to school for a PhD in neurobiology as was previously stated by another commenter. I studied history & psychology, just started my own business and had my life all lined up, starting my studies in international security policy for my Masters, saving to study abroad for a year and my plan to after serve in the special forces for several years before earning my law degree. I do not want to become a doctor or scientist, I never did, but now I will because something must be done. For myself and for everyone else who is trapped in this life.

I refuse to accept this, and therefore I do not have time to argue or be ornery even though of course my reflex is to want to do just that, as I'm sure all of us guys can understand. Certainly also especially when we are trapped like this.

Please read these words and know that there is hope. There always is, there always is so long as there is a fire still burning.

I know that embers still yet smolder, even in the depths of the dark, deep in the eyes of every young man or woman who just awoke, gasping for air, laying in a state hospital cot with fresh steel rods in their neck and a ventilator in their throat. It will take a little while for that scared, hurt, beat-dog-in-the-corner feeling to subside, the one where you completely understand what an animal hit by a car that's half dead and broken on the side of the road hobbling around feels like. Once they realize where they are and realize what they just lost, they will want it back so bad and be willing to do absolutely anything to accomplish that, climb any mountain, slay any devil.

Right before the doctors and hospital staff come in and tell them "it's okay" and they'll still be able to live a "comfortable life". But they will just have to "get used to this", but "that's okay", they'll be "comfortable". I know that that moment, that moment before the doctors and social workers open their gaping maws to start to swallow your life by starting to let loose the first of those ridiculous words that many might actually believe because of the diplomas hang above those desks, I know that that moment when that fire burned bright and true in their hearts, I know that that moment still lives somewhere in the back of any man or woman's mind who has been through this, no matter how much has piled on top of it since then. And it does pile on, so much does.

But that fire and that moment is still there somewhere even if its deep down in the depths of the black of your eyes when you lie silently in bed and stare at the ceiling at night all alone and feel your heart shattered into a million pieces and want to cry out for your life, but you've done it so many times and you're just tired of it all. Even then that fire is still there even if its only a pinprick of light in the depths of all that black.

Please, all of you, read these words and know that there is still hope.

What you have stated Moe, this is my current mission and goal. I am a motivated and intelligent young man in graduate school about to turn 30 years old, I recently got injured one year ago and upon waking up from essentially a medically induced coma, I could not comprehend why there is not more treatment and and a cure yet. This has been mind blowing to me. This is the year 2018 what the hell is going on. Someone has not been doing their job, has been slacking and I now apparently I have to take over and clean it up.

I was told that I just have to get used to it, I say f*ck that. The emphasis in the medical world is to manage the symptoms and to allow somebody to "live a comfortable life". I do not want that, I want it all. And I will not stop.

I resolved that I will have to do it myself and work with other like-minded individuals in order to organize exactly what you stated in your question.

Please I hope that you are interested in doing exactly what you stated needs to be done in your original post. We need organization and a solid team to get this done and I will gladly partner with you on this issue. Please contact me directly and any and every one else. I am working on it now and have been all night, every night since I righted my ship.

And what do you know, I spent far more time writing this post than I ever wanted to. Yet it was important. Perhaps even the most important thing that I could be doing after all in many respects.

[niallel]

This is a fair criticism. I usually stay far, far away from the cure forum. I just woke up early this morning and I always browse the Care Cure homepage with the latest threads and this one piqued my curiosity and I wondered what Moe meant.

I normally try not to piss on people's parades (or hypothetical fantasy pride parades), and try to withhold what I consider rational thought from the usual overly optimistic cure forums. Some people need that glimmer of hope to keep breathing... for me it was easier to accept the fact that this is life now and it's never, ever going to change and move on. But perhaps the truth lies somewhere in between. In order to move on with my life I've had to completely reject the possibility of a cure, and while I think the scientific evidence and medical precedents are on my side, those who have had to completely believe in an imminent cure are not necessarily more unconsciously biased toward the possibility of a cure than I am against one.

Still I think the main criticism of my post (before I started getting all salty and ornery) is fair.

It's not as if people marching for us or waiving cripple flags or voting for constitutional amendments that say "Spinal cord injuries are officially the devil's work" is going to do anyone any good. It's a (thus far at least) insurmountable technical challenge, not an issue of social injustice.

There are no pride parades for teleportation or marches on washington for the immediate and complete funding of a time travel machine. Yet asking for these as yet impossible technologies is probably closer in nature to asking for an SCI cure than legalizing pot or letting gays bone each other without breaking the law.

If we look at a more comparable cause, Breast Cancer has been very big and raised tons of money (way more than SCI could ever feasibly raise) and have been in full swing for decades, and the result has been maybe a 10 or 15% decrease in overall mortality (and who's to say that wouldn't have happened anyway with improving imaging technology and increased screening). There's certainly nothing approaching a "cure" for all breast cancer on the horizon and pretty much all of us know someone who's had breast cancer.

But let me reign myself in before I go all crotchety-old-man on you fine folks again.

If you want to do something for a cure, great. Go get a PhD in neurobiology and do the research yourself... I'd certainly never fault anyone for pursuing science, regardless of whether or not you can find a cure, you're likely to stumble across something that makes someone's life better. Hell, you don't have to go that far, researchers are always looking for lab assistants, go volunteer your time doing the work, not trying to convince others to raise the money.

If you want to go out and organize to make lives better for SCIers everywhere, you should probably start by pushing developing countries towards starting to build accessible infrastructure or mass producing high end cushions to provide to global SCIers who's countries can't afford what we would consider proper SCI equipment. Organize for a single payer system in the US and I'll be right behind you, it will free up trillions in savings, some of which will almost necessarily filter back into basic science research furthering the cause of a cure. Write your senator to convince them that a hard cutoff for loss of Social Security, Medicare and Medicaid benefits is counterproductive and there should be a graduated system of benefits reduction as income increases, more disabled people will go back to work if they know their benefits won't be suddenly and precipitously cut off after they earn one dollar over X amount.

There's no grand conspiracy to keep us cripppled.

If you're going to fight for something, fight for something real. If you're going to organize, put your efforts toward improving real people's lives, not slightly improving pie-in-the-sky chances of a cure. I guess that was what rubbed me the wrong way, feeling like Moe was suggesting putting all this effort into trying to raise money and build public will for a cause that is unlikely to succeed in any of our lifetimes. There are more pressing issues in the world than an SCI cure. There are more pressing issues for SCIers than a cure.

I'm a romantic and a bleeding heart and I've also trained as an economist. I love a good protest and even a riot or two if it's for the right cause, but damn if it don't make my blood boil seeing such energy and passion wasted inefficiently on pointless endeavors.

Thanks for your detailed response.

I too have days where I think my condition will never improve, but then I remember there are many research projects that have shown a lot of promise and while not leading to a complete cure could improve our lives in a sizeable way. Things like estim, peptides, nogo blockers, stem cells, chase etc which we all come here to hear about.

Regarding your points about campaigning for others to raise money, its not something for me either. However that doesn't mean its wrong, there are many in the community who have been successful at this and raised significant amounts of money which is going towards the "cures" we are hearing about. I'm sure they wouldn't think their efforts were pointless.

The time taken to become a researcher is going to be huge for most of us. I would love to know more about the science and help in that way, but its a mountain too tall to climb for me. As an economist you must see the opportunity cost means it is better for people to use the skills they have today to help in a way they can. As an example start a company using your skills that enables you to fund many researchers.
I know its not appropriate for everyone, but its possible for some of us. For others use the skills they have to get money to fund more research, which I think is what Moe is advocating.

[Moe]

I'm at work, I'll catch up reading as soon as I can, but just to be clear, the 'visibility fight' in my view was not to raise money nor support any research in particular -that exists already... The visibility was to fight unnecessary obstacles/regulations if something DOES show up...

Dr. Silver's Peptide and Dr. Young's UCB research seems promising for example, we cannot let time go by and let it rot in a shelf waiting for BS regulation approvals... some regulations is for our own good for safety reasons, I agree. we need more green lights and less obstacles. Per example its been about 4 years since phase II... 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.

Think as per example:

Imagine if the 'peptide' or 'UBCB' is a success in humans... even better than expected! wow would be great news.... oh but wait, didn't pass regulations, therefore not ready for the public... Even if I inherited 1 billion dollars I still cannot purchase it legally for myself.

Regulations need to be dealt with before a potential treatment shows up, staying in the closet will just make us non-existent to the public/politic views.

back to work... brb

[niallel]

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?

[t8burst]

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

[tomsonite]

... 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%.

[Moe]

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...

[Silvio GS]

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!

[lynnifer]

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.

[Moe]

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....

[lurch]

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.

[tomsonite]

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.

[t8burst]

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.

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...