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

  1. #101
    Swh2007; good post for all. I do think a concentrated effort of the following can't hurt nomatter what we might ultimately do. I think that pressuring The chris Reeve foundation to publisize more their reasearch endeavors as opposed to the mountain climbing and such would be helpful and bring attention by us to the cure. I contacted them and expressed my view and told them we were interested in the work that supposed is going on in reasearch. I was told that their research arm is active and striving for a cure. I indicated that we were interested in following their research and would be honing in on their progress. I think this cannot hurt our cause.

    Doug Lansman is head of their research and is a nice guy and understands our interest.

  2. #102
    Quote Originally Posted by 0xSquidy View Post
    I'm so disappointed by the lack of interest of so many injured people. SCI community doesn't get involved to this and you expect politicians and other people will? So ridiculous.
    Are you that busy? Or your human nature just died the time you sat down in your wheelchairs? A part from honorable excuses, if you can't do whatever you can (and everyone can do something) to get people working in our condition, then you my fellows, will be sit so much longer than it could be. Don't like being a cripple? Well it's all your fault.
    You guys should be embarrassed, i am
    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.

  3. #103
    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.

  4. #104
    I'm not of the opinion that the Christopher Reeve Foundation needs our oversight. They're pretty transparent and publicly disclose the research they fund yearly.

    This isn't a fundraising exercise as far as I can glean but an effort to set up a system to hold the 300 + SCI fundraising groups out there accountable.
    Last edited by antiquity; 02-26-2010 at 04:58 PM.

  5. #105
    Antiquity, What I'm saying, redirect the focus to research and ul;timately a cure. The C. Reeve foundation is a good place to start as there have been questions of their focus by folks even on this board. It doesn't cost us anything and let's them know we are as a gruop interested on their research and as important , their direction. Doesn't hurt to be proactive and is something we all can do. I think we'll see and hear more from them if we focus on research and cure.

  6. #106
    Antiquity, with all the talk of effort, we can take advantage of our resources ( all of us) and get to those reputable places with just our numbers and e-mails and phone calls. We're looking for forward movement on research and get things moving of possible. What better way than to contact these entities with our numbers. When I spoke with The Foundation, there was a sincere response as to our needs. Now we have to see the followthru. This isn't rocket science but a proven way to get some response and results.

  7. #107
    Senior Member
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    Smile Leo's Plan B

    Spreadsheet: http://bit.ly/chronicSCI
    Document: http://bit.ly/chronicSCIdoc


    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.

    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.

    When the list is complete and we have a sense of the total number of foundations and their revenue stream then we can discuss a strategy to help them move forward in a unified voice and channel the money to clinical trials. When we have quantified the numbers we can present them to whole CC community and let the community decide how to proceed.

    It is my experience on this site that there are only a few people who wish to participate and as I have said, to me that is ok. This injury that many of you have suffered is brutal and unrelenting. There are no days off, no vacation, no time to refuel and reenergize. This are difficult days for everyone in so many ways and if you can't get geared up for something like this don't feel bad. There are some of us who don't mind putting in the time and energy as limited as it may be.

    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

  8. #108
    Hi Keeping On,

    I agree with the idea of holding these groups accountable, was just pointing out that the CRF is above board where research funding is concerned. Their main research page is here: http://www.christopherreeve.org/site...3/Research.htm

    Bostondad,

    Agreed.

  9. #109
    Senior Member kenzeezy's Avatar
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    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.

  10. #110
    Senior Member
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    Smile Instructions

    Spreadsheet: http://bit.ly/chronicSCI
    Document: http://bit.ly/chronicSCIdoc



    Kenzeezy,
    Thanx for joining in. If you take a peek at the list above in Document: http://bit.ly/chronicSCIdoc you will see a starter list of nonprofits.

    We have been taking a name of an organization and opening their website. If they discuss money going to research for a cure for spinal cord injury/paralysis then copy their info onto the spreadsheet above, Spreadsheet: http://bit.ly/chronicSCI.

    When you copy the info note the columns on the top of the sheet and fill in the approriate info. I will get back to you on where to find their financial info. Fill in whatever you can and we can always go back in fill in the blanks.



    If you do not want to use the document list above then you can start doing a google search of smaller foundations in you state. Put in your state and words like foundations, spinal cord, paralysis, non profits etc and see what comes up.

    For example: wwwheadnorth.org

    HeadNorth Foundation
    2658 Del Mar Heights Rd #196
    Del Mar, CA 92014

    Tel: (858) 350 - 3193

    You have a ton in CA, should be a fun search. Try state tax database too. http://ag.ca.gov/charities/resources.php

    As I said before I believe you will enjoy reading these sites as there is so much energy for a cure on each one of them. Our goal is to bundle that energy into one big ball.
    Good luck and thanx again.
    Last edited by bostondad; 02-27-2010 at 09:17 AM.

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