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

  1. #21
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    Quote Originally Posted by Leo View Post
    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
    I'm curious to know your view on whether the priorities of the Christopher Reeve Foundation have changed since his passing.

    Also, I'm curious to know your view on whether the members of CC or any other spinal cord forum could build a consensus and voice for the sci community if they chose to do it and then somehow influence the priorities of some of the sci organizations.

    fyi I was at a major fundraiser respecting a different disease and had a chance to hear someone (who has the disease) high up in the national fundraising organization speak about priorities, especially the tight money/fundraising environment that currently exists. In that organization, prevention was the the lowest priority, then care, and then cure as the highest, and the organization uses the money it raises to influence the direction of research. But that disease has different aspects than sci in that there is no comparison to acute treatment, and they are less than a decade away from a treatment that will allow people to maintain good health until a cure is found. The disease does involve regeneration of an organ as 1/2 of the cure formula and so stem cell research is ongoing for that disease.

  2. #22
    Quote Originally Posted by Fly_Pelican_Fly View Post
    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.

    That is a great analisys of the situatuation I think. Hey Fly how did you understand so many things so fast? :-))

    Then we have a lot to learn from Leo, Betheny & others great CC members on that issue.

    The fact is that advocating for a cure it is a very hard job, you have to take care of your health first, then manage your energy & stress as if you are running a marathon.
    Since we are an easy target for depression whatever you are doing make sure you are ready to face a failure with no luck of enthusiasm.
    Failure is very likely in our fight, but just one success can make a difference.

    Paolo

  3. #23
    Guys, we have a group that is talking right now. If we lead, others will follow. The Christopher Reeves Foundation has been mentioned several times here. We all know that they are in the thick of things. Sometimes when an entity is know for a certain cause, it lives on the publicity and not the focus. We are focused and we can light a fire under some asses. I'll contact the foundation and see what I can find out. I'll make other contacts and see what I can find out. Let's work together and find a "cure". We know that things are happening; Let's follow these things and discuss them as WE FIND THEM. Certainly we know what Wise is up to.Let's discuss the progressions and ask questions for all to see. We're just beginning.

  4. #24
    Senior Member 0xSquidy's Avatar
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    Quote Originally Posted by Fly_Pelican_Fly View Post
    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..

    I agree with you Fly. I'm not saying it's easy. But you all know, what is easy living with a SCI already? We SCI survivors have dealt with the worst conditions AB can ever imagine. We share the same problems and we have our brain, we have our voice, ... why don't use them?

    Everyone wants to live their live the best they can...i want that too. But that is not incompatible at all. I once though of this... should i raise a SCI flag and make noise or live my life the best i can? I first chosed the second option, but now i realized i can do both. We can and achieve both of them. And since we have that opportunity, since we can, we HAVE TO.
    For us, and for the people that sadly will join this community.

    The hope and deception game veterans have been dealing for too many years...yes, that's something we have against the fight, but it's only another thing we have to deal with. And i don't blame that, i'm already tired of this game and i'm just beginning with this crap. Life is a bitch but i don't think we have to quit yelling what we want (now that we know it's possible) only because of that. It's a must.

    Quote Originally Posted by swh2007 View Post
    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.
    That's exactly what i'm thinking about. As I said before, some veterans have their own reasons to feel exhausted about this game. But i know some of them still want to fight as hard as we want.


    Quote Originally Posted by keeping on View Post
    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.
    Human trials are just starting... but you know that's a couple of steps in a trip to the everest.

    Wise is a skilled guy and seems to be working in the right direction, but the Everest mountain is far away no matter how strong you are. What if Wise's trials just don't go as good as he and we expect they should? We jump out of the window?
    I agree supporting Wise and his fellows is a must here, but i think we have to work our part too and not let him be the only guy who's working out.

    Is there something we can do while he works in his lab? YES OF COURSE. Are we doing it? NO... not yet.

    Quote Originally Posted by Leo View Post
    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.
    That's true...ignorance and demotivation, that's really harming ourselves. I have a though on that at the end of this post.

    Quote Originally Posted by paolocipolla View Post
    That is a great analisys of the situatuation I think. Hey Fly how did you understand so many things so fast? :-))

    Then we have a lot to learn from Leo, Betheny & others great CC members on that issue.

    The fact is that advocating for a cure it is a very hard job
    , you have to take care of your health first, then manage your energy & stress as if you are running a marathon.
    Since we are an easy target for depression whatever you are doing make sure you are ready to face a failure with no luck of enthusiasm.
    Failure is very likely in our fight, but just one success can make a difference.

    Paolo

    I agree with you Paolo. As i said a little higher up, we're alreading doing a hard job. We survived situations that other people haven't been that fortunated to survive. We deal with life in a way that makes people think that we are all fighters. We have / are facing a lot of stuff like that, lack of energy, stress, depression... i'm not asking for what we are not doing or know how to do already. We survived, we are here, we are ready for that.

    It's easy? No it's not, but see our friends walking, running and dancing is easy? And we deal with it, right?

    Quote Originally Posted by keeping on View Post
    Guys, we have a group that is talking right now. If we lead, others will follow. The Christopher Reeves Foundation has been mentioned several times here. We all know that they are in the thick of things. Sometimes when an entity is know for a certain cause, it lives on the publicity and not the focus. We are focused and we can light a fire under some asses. I'll contact the foundation and see what I can find out. I'll make other contacts and see what I can find out. Let's work together and find a "cure". We know that things are happening; Let's follow these things and discuss them as WE FIND THEM. Certainly we know what Wise is up to.Let's discuss the progressions and ask questions for all to see. We're just beginning.

    People don't know WHAT is a spinal cord injury and what "gifts" comes with it. People is ignorant, and that's not their fault, but don't fool yourselves, it's our fault to keep our mouth shout. We have to make people know what is this, what we need, what is already on the way.

    Christopher Reeve and Dana did an awesome job. They saved us let's say 10 years of waiting. Can't we, the whole community, not do that? Isn't it sad that Superman died to leave us here... just waiting for another superman? Or for a miracle cure to come?


    We are not alone. There's skilled people here, there's ENERGY here... maybe a lil decimated, but we can pile it up.

    Seriously folks, cure is not going to knock our doors. We have to hit the table, unite the SCI community all together and start poking the world.
    We can write, speak and move. We can be a pain in the ass. You may be throwing me rocks now but I think greenpeace-style is the way to go.
    Let's put pressure, let's make some noise.

  5. #25
    OxSquidy- i don't know you, but i'm already a fan of you

    I agree with you and you're alone...

    and Paolo- you can put a new european person on the fight list- OxSquidy is his name..
    Last edited by Mikki82; 02-18-2010 at 09:13 PM.

  6. #26
    Quote Originally Posted by paolocipolla View Post
    That is a great analisys of the situatuation I think. Hey Fly how did you understand so many things so fast? :-))
    Paolo
    Paolo, 3 months in rehabilitation post-injury was like a lifetime for me - and much of it was spent analysing how post-operative attitudes changed so early from dispair to denial to hope to survival. I saw how consultants and physiotherapists with a single word could knock a patient for six. I've seen people take great advantages of disability benefits and opportunities that would arise from their disability - eg paralympics, joining associations, equipment distribution. Then there are the cheeky chancers who use the sympathy for their own gain. Some turn to God. Some turn against God. Many reject their families and loved ones in some sort of sacrifice. Grown men crying in their mothers arms. Affairs between patients and carers. A black market for viagra and painkillers. Jokes about crapping yourself. Heroes and villians all over the place. Camaraderie. It's got it all.

    It's like a soap opera in rehab. Maybe we should make a sitcom!

    But seriously though, OxSquidy dont lose the fight. Keep it up. We should do all that we can to bring back the hope and fight amongst the sufferers. Some are destined to lead - and others to follow.

    The argument is so compelling that a canny public figurehead could really make a name for themselves. It's just finding the right medium.

    Onwards and upwards!

  7. #27
    im in to protest and support

  8. #28
    Back in 2006 a bunch of us from CC had very similar conversations born out of the identical frustration of wanting to do something collectively to get support and funding for spinal cord research as well as to highlight the urgency of a cure for paralysis. Stepnow was started, it gathered members worldwide, carried out campaigns. It attempted to tackle the issue on a global level, trying to activate SCI communities in as many countries as possible. I think that it has had some kind of success in that it did reach out to many, but the energy and resources to keep this kind of drive going proved to be way beyond what Stepnow could manage. However, Stepnow is still there both as a website and in spirit and there is still interaction between members even if there are no campaigns (apart from the petition). Many members are extremely active in their own countries, pushing for research or awareness in ways that are more realistic and logistically more manageable than a global push.

    What I have learnt is that it is important is to remain VISIBLE and VOCAL - do whatever is possible to keep the issue of SCI and cure research out there.

    Oxsquidy - are there any advocacy groups in Spain pushing for cure research? What are your experiences from talking to others there?

  9. #29
    Senior Member 0xSquidy's Avatar
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    Quote Originally Posted by Mikki82 View Post
    OxSquidy- i don't know you, but i'm already a fan of you

    I agree with you and you're alone...

    and Paolo- you can put a new european person on the fight list- OxSquidy is his name..
    Thank you Mikki, the more we are, the more fun this is going to be

    Quote Originally Posted by Fly_Pelican_Fly View Post
    But seriously though, OxSquidy dont lose the fight. Keep it up. We should do all that we can to bring back the hope and fight amongst the sufferers. Some are destined to lead - and others to follow.

    The argument is so compelling that a canny public figurehead could really make a name for themselves. It's just finding the right medium.

    Onwards and upwards!
    We must do this, seriously.

    Quote Originally Posted by MValente81807 View Post
    im in to protest and support
    Thank you, time to take a move.

    Quote Originally Posted by carbar View Post
    Back in 2006 a bunch of us from CC had very similar conversations born out of the identical frustration of wanting to do something collectively to get support and funding for spinal cord research as well as to highlight the urgency of a cure for paralysis. Stepnow was started, it gathered members worldwide, carried out campaigns. It attempted to tackle the issue on a global level, trying to activate SCI communities in as many countries as possible. I think that it has had some kind of success in that it did reach out to many, but the energy and resources to keep this kind of drive going proved to be way beyond what Stepnow could manage. However, Stepnow is still there both as a website and in spirit and there is still interaction between members even if there are no campaigns (apart from the petition). Many members are extremely active in their own countries, pushing for research or awareness in ways that are more realistic and logistically more manageable than a global push.

    What I have learnt is that it is important is to remain VISIBLE and VOCAL - do whatever is possible to keep the issue of SCI and cure research out there.

    Oxsquidy - are there any advocacy groups in Spain pushing for cure research? What are your experiences from talking to others there?
    I've been looking stepnow and it looks something like we have to do, but they look like in pause or something. I agree that keeping this fight gotta be the most exhausting thing...but i don't think we have another option, we either do it or do it.

    In Spain there are some stuff but sport oriented, about curing there's no much thing... Why did I join carecure? Because there's no forum or place like that in spain, ridiculous right? Maybe i'll try to fix that on the way.

    The rehab gym i go to (www.fundacionsbs.org) is a clone of Project Walk, they go there once in a while to learn new techniques and stuff which i think is good. The founder of this place, when he was injured he found himself at home after standard rehab every spain citizen goes through (which is CRAP) with no where to keep working out rehabilitation so he built that up. I know he's very active and it's kinda obsessed with a cure.
    I arranged an appointment with him next week and i'll expose we have to do something worldwide, i suspect he's going to agree although is a busy one.

    I wonder what is what we have to do. I'm thinking of a little (as big as possible) "army" of motivated people who can manage more people worldwide (other injured people or friends, familiars...) to take every kind of actions to raise awereness and therefore attention and fundings. Speak in schools, universities, any kind of social/public event, ask and make noise in any kind of politic meetings, TV shows... and that's what my poor brain squeezes out so far. But i know there's smart people here with bright ideas.
    We gotta get organized (despite of geographical barriers and distances) and start moving, show just started.
    Any though on the "greenpeace way to go"?

  10. #30
    I shall keep plugging the www.endparalysis.com petition for a start. Im still flabbergasted that there are so few signatures. Surely a million is achievable as there are 2 million SCI sufferers worldwide. Grrrrrrrrrr!

    I've been trying to contact David Burrowes who is an Member of Parliament here in the UK. He is pushing the government here in the UK to provide more umbilical cord blood banks with a view that there will be a surge in demand for the blood in the near future. We only have 5 public umbilical cord blood banks here in the UK which is not nearly enough. Im still yet to hear from him but if the email doesnt work then a hand written letter is winging its way to him.

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