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

  1. #111
    Senior Member 0xSquidy's Avatar
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    Quote Originally Posted by orangejello View Post
    Just an observation: if you want to drum up interest and encourage people to join you, berating your target audience isn't likely going to help much with your cause.

    I realize you are trying to get people fired up but speaking only for myself, this kind of rhetoric is one of the things that turns me off the cure forum.
    What i think you fail to realize is that it's not my cause, it's yours. It's theirs. It's the cause of all of us. Once we exit rehab hospital and settle in our house, do the paperwork and feel better in both physical and mental... our only cause is getting our lifes back. That includes shaking off the lazyness, gathering all the energy we have left (and we have more than we think) and push this boat. We are ALL in it.

    I'm sorry that my rhetoric bothers you, but what bothers me is shitting on myself from time to time.
    I'm glad you posted your thoughs, i'm up to listen to anyone's, but i'm sad that you ONLY participated here to complain, and not to offer your help to which, at the end, is your cause too.

    Quote Originally Posted by keeping on View Post
    Oxsquidy, I agree we have to do something now. I think a simple but effective approach would be to contact ( all of us) entities like The Chris Reeve Foundation and let them know we are watching. We can ask and followresearch and possible clinical trials. We can do this with entities that come out with a finding with rats and follow the progression of their efforts. We then can eliminate those that are not for real and focus on those that are. Wise's project is legit and he is well respected everywhere. We should follow his project to the tee and ask for updates as we go. Hey it's a good start and all we need to do is keep each other informed and make the calls.
    Quote Originally Posted by bostondad View Post
    Oxquidy

    I do not believe it benefits anyone to go after people who do not care to get invloved, or can not or are uncomfortable in getting involved. Let them be.

    Unless I am wrong, the direction here is to first put together a master list of nonprofits.
    If you have an issue with others getting involved than maybe you should take a hardlook at who has been working on this. The people who have added to the list are involved.
    This is just my personal point of view, i can't stand people don't giving a damn about doing something to speed up their cure. I can't stand people who just quit for no reason. I don't see any logical on that.
    I know it's tough, i'm in the same wheelchair and i know it sucks, turns your mood down and everything, but i know there's light at the end of the tunnel and the only thing i wanna do is speed up.

    Quote Originally Posted by bostondad View Post
    If your agenda is different than creating this list that is fine and good luck with whatever direction you are going. I do not believe in off line meetings and PM. I believe in complete transparency and inclusion. If we are all on the same page then it shows on these pages.
    Then you just don't believe in organization, and with that, any enterprise is going to fail, that is a fact. And i dont want to fail, that's why i'm trying to transmit you all that we FIRST need to stablish a working basis. I am experienced in these matters. This is going to make harder and more complex and eventually will be IMPOSSIBLE to keep working in this thread. The ideas that people give will get lost and there will be no way to correctly track our tasks.

    It will be transparency and inclusion, that doesn't have to fade away. I must insist, we need to stablish a platform of working, and chat everyday if possible to give constant feedback and help each others with their individual work. Please, reconsider your working plan.

    Quote Originally Posted by bostondad View Post
    Try not to get frustrated and just do what you can do but please just let others be.
    If they are just reading this thread and looking for a glimmer of hope that in itself is very cool. I truly believe that we are onto something here that can possibly be another way to speed up the race for a cure. Lets prove it.

    Peace
    I will try my best not to get frustrated, but i'm serious on the need of a better way to work.
    I sent you a PM to reach you on skype and you didn't answer, do you really think this is the best way to go? We have to consider this as an enterprise and work as an enterprise, that's the only way to achieve a goal. Fruthermore, we are talking about a big goal with huge endeavour from everyone... i repeat my question, do you think a single forum will be enough to make this huge endeavour become true? Think deeply about this.

  2. #112
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    Forums can provide information, links, answer questions, but they cannot provide us with a cure. It is up to us to get involved, to ask questions and invest in the cure/project we believe to be the most promising.

    I got tired of all the talk and got involved with Neurogel en Marche Association (www.neurogelenmarche.org). The Association is made up of volunteers (patients, friends, and family members) who managed to purchase the patent for a cure they believe to be very promising.

    "Big goal, big endeavor"... indeed! The good part is that we are close, very close, so close I can almost feel my legs again, but the sad part is the people who have struggled to keep this therapy going need help to make it to the finishing line; the stakes are high for all of us!

    Prs. Sykova, Gorio and Decherchi need about $ 300,000 to complete their pre-clinical work and another $ 800,000 to begin the first human trials.. anybody knows how we can raise a million dollars + to fund this project? I give monthly - but I could probably do more... if 10,000 people gave $ $100, 1,000 people gave $ 1,000, 10 patients could be operated on in 2010:I am game, anyone else?

    I agree with all the patients who want a cure now, so please, "less talk, more action!"
    gretchen 1

  3. #113
    Quote Originally Posted by 0xSquidy View Post
    What i think you fail to realize is that it's not my cause, it's yours. It's theirs. It's the cause of all of us. Once we exit rehab hospital and settle in our house, do the paperwork and feel better in both physical and mental... our only cause is getting our lifes back. That includes shaking off the lazyness, gathering all the energy we have left (and we have more than we think) and push this boat. We are ALL in it.

    I'm sorry that my rhetoric bothers you, but what bothers me is shitting on myself from time to time.
    I'm glad you posted your thoughs, i'm up to listen to anyone's, but i'm sad that you ONLY participated here to complain, and not to offer your help to which, at the end, is your cause too.

    Your rheoric doesn't bother me. But neither does it inspire or encourage me to get involved either here or elsewhere--which was my point in the first place. It only serves to reinforce my negative feelings about the cure forum in general. Often it feels to me like the cure forum is often little more than a reseviour of negativity, both from those who feel pessmistic about a cure and those such as yourself who are looking to lay blame or berate others for not advocating how you think they should. People come to the cure forum because they want hope. Many, I am sure, want also to find a way they can help with a cure. That's why I read it. But more often than not, afterwards I feel very discouraged and lose interest due to the negativity on both sides. I am sure I can't be the only one. I know I am doing nothing more than wasting my breath on this post. But if you are looking for one of the many reasons why the sci community is so fractured and people are discouraged about getting involved in cure advocacy, you might want to consider the tone of your posts come across.

  4. #114
    you know what would REALLY help researchers raise money? Publishing something like a mutual fund prospectus on a yearly basis with as much information on what they're doing as realistically possible. I understand some research stays quiet until publication, but still...


  5. #115
    Oxsquidy and Bostondad; keep up the good work. Those of us that want to go further will. Those of us that don't for any reason will also as things progress. We are in this for everyone and we will succed. We all have to look at what is happening in this areana. Yes mouse trials can get old, buit the therapys that are tries are novel. We are moving forward above anything previous. Let's continue to follow Wise's pursuit as I feel it's only the tip of the iceberg. You guys just keep going and I and others will too.

  6. #116

    Time to reframe.

    Hi folks- I feel that I need to chime in and at least clarify what I am working on and then try to summarize this thread as I see it. We are all in this together.

    Early on Leo stated that there are "many good foundations" laid down and that we need to grow, connect, and coalesce.

    Antiquity stated that it would be great if various organizations could be funneled into three or four general directions.

    So I stirred up a very rough, scattered list document (post 47) of "research" oriented nonprofit organizations. I was amazed and excited by the all the folks that are working on our behalf in towards the same goal "Restorative therapies".

    We are like little islands that need bridges attached.

    So I started a document and I suggested a spreadsheet. Oxsquid started one.
    Spreadsheet: http://bit.ly/chronicSCI
    Document: http://bit.ly/chronicSCIdoc

    So far I've been going through the document and crossing off organizations. I've been moving ones that are research oriented into the spreadsheet and tagging my initials 'ccs' to the ones that I have entered.

    First we need information to work with. The next step is identifying actions, discussing research, and trying to build harmony.

    For people that would like to help add to the spreadsheet information that is incomplete or not currently listed... please do help.

    I'll try at some directions tonight or tomorrow -- I'm in the midst of a grad school projects that are time dependent and I will try my best keep updating and checking the thread.

  7. #117
    Quote Originally Posted by gretchen View Post
    Forums can provide information, links, answer questions, but they cannot provide us with a cure. It is up to us to get involved, to ask questions and invest in the cure/project we believe to be the most promising.

    I got tired of all the talk and got involved with Neurogel en Marche Association (www.neurogelenmarche.org). The Association is made up of volunteers (patients, friends, and family members) who managed to purchase the patent for a cure they believe to be very promising.

    "Big goal, big endeavor"... indeed! The good part is that we are close, very close, so close I can almost feel my legs again, but the sad part is the people who have struggled to keep this therapy going need help to make it to the finishing line; the stakes are high for all of us!

    Prs. Sykova, Gorio and Decherchi need about $ 300,000 to complete their pre-clinical work and another $ 800,000 to begin the first human trials.. anybody knows how we can raise a million dollars + to fund this project? I give monthly - but I could probably do more... if 10,000 people gave $ $100, 1,000 people gave $ 1,000, 10 patients could be operated on in 2010:I am game, anyone else?

    I agree with all the patients who want a cure now, so please, "less talk, more action!"
    Thank you for the update. This is very interesting. Maybe this project would be one areas we can try to persuade/convice groups to support.

  8. #118
    Quote Originally Posted by kenzeezy View Post
    What do I do to get in on this or to help with your guys' plan? Guide me...and please forgive me if it's annoying that I ask after, as I see, this discussion has been going on for a length of 11 pages.
    Kenzeezy- Please check out my post and if I can answer any questions- let me know.

  9. #119
    Senior Member lynnifer's Avatar
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    Quote Originally Posted by 0xSquidy View Post
    What i think you fail to realize is that it's not my cause, it's yours. It's theirs. It's the cause of all of us. Once we exit rehab hospital and settle in our house, do the paperwork and feel better in both physical and mental... our only cause is getting our lifes back.
    Not everyone gets to feel better 'physically and mentally' ... everyone has different resources, strengths, weaknesses .... I think that's why this community is so fractured and apathetic. It's the 'haves' and the 'have-nots' .. whether that's emotional, financial and even physical.
    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

  10. #120
    Senior Member kenzeezy's Avatar
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    i'll do mah best!

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