Page 7 of 13 FirstFirst 12345678910111213 LastLast
Results 61 to 70 of 123

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

  1. #61
    As this topic has come up before, I recall that there were over 100 SCI fundraising groups listed on the Network For Good site. Just type in "spinal cord injury" to bring up the groups.
    http://www.networkforgood.org/Partne...chLanding.aspx

    These should be merged into no more than 3 national fundraising groups IMO. We can get much further by cooperating and consolidating efforts.

    A watchdog group would be good. I'm sure many of us remember the Gateway to a Cure group that did misappropriate funds intended for SCI research: http://sci.rutgers.edu/forum/showthr...432#post632432


    Quote Originally Posted by keeping on View Post
    Antiquity, thanks a lot for the info. My understanding is that Sen Harkin who is very active in this is trying to finalize funding. I don't know, but you might, is there funding for chronic conditions specifically? I think Harkin will be looking at this as his nephew is a chronic of several years. If there is something I or we can do to promote this, let us know.

    T.J.
    Hopefully Steven or Cheese will pop in re Harkin and the bills funding status.

  2. #62
    Guys, I spoke with Douglas Landsman,research at Christopher Reeve Foundation. I indicated that some of us were somewhat discouraged with the website of the foundation. I said we were interested in research and advancements and possible human trials vs mountain climbing with wheelchairs. I was absolutely told that research is a major component of the foundation. Go to www.christopherreeve-org/research for more info. I discussed with him the need for human trials and real news on advancements. He told me that remylination is a focus of their research along with reconnecting nerves. I told him that we wnat more and clearer pictures of what is being worked on and what the staus of progression is occuring. He is now aware that we on this forum are focused on the "cure" aspect of spinal injuries and diseases. He assured me that the foundation is working on just that.

    T.J.

  3. #63
    Senior Member
    Join Date
    Sep 2004
    Location
    Boston, Mass
    Posts
    388

    Thumbs up Carecure Watchdogs Making Calls

    Antiquity,
    Thank you for the lead. After we have a master list we will have to cull through them for duplicates. We did our first research through the IRS database but at this point each of the sites are limited by key words, such as spinal or paralysis etc.. I know for a fact that there are many, many more foundations under many names i.e The Travis Roy Foundation ( a great one by the way) , Mike Utley Foundation and so on. I also agree about the limited number but unfortunately we can't do much about that....yet.

    Keeping On, great call, you have cracked the first door. Do you have time to call the Miami Project as well? Please keep a note somewhere of the calls you made with the person you contacted and what they said etc. We can add these names and notes to a database for future calls and follow up. They need to know we are watching and they need to know the calls are coming from here and that they are being discussed. Terrific job.

  4. #64
    Bostondad, I've spoken with the Miami Project many times. I know theya re applying for fda approval for Schwan Cells and a Growth Factor. I know it's not mich; but we can now hone in on this and let them know we are watching. I think that is critical; that we let these entities know we are following there progress and expect answers and results. As I said before University California San Diego posted an announcement of some breakthru in connecting nerves thru the damaged area. I called and found they had did this with rats; they were then going to see if the rats improved; if they did, then they would go to larger animals and test for efficay and safety. If we all contact and let these sources know , we are following, we can find out whose doing something real and whose zooming who.

  5. #65
    Senior Member 0xSquidy's Avatar
    Join Date
    Dec 2009
    Location
    Barcelona (Spain)
    Posts
    1,072
    If we want to do this, we have to work in a better way than in this thread... this is going to be a mess.

    I created this spreadsheet http://bit.ly/chronicSCIcontact so you can leave your contact info. I will create a newsletter so every mail we send to it, will be recieved by all of us. With that and the use of google docs we can get this through. We will be able to track our own movements, write any outcomes or responses we get...anything, and that info will be ready to check.
    But seriously, let's do it the right way.

  6. #66
    Wise, I know you see all these posts and the building of momentum; can you add anything for us and comment on our blogs?

    Thanks in advance
    T.J.

  7. #67
    Senior Member
    Join Date
    Sep 2004
    Location
    Boston, Mass
    Posts
    388
    OxSquidy,
    Google won't let me access this spread sheet...any suggestions?

  8. #68
    Senior Member 0xSquidy's Avatar
    Join Date
    Dec 2009
    Location
    Barcelona (Spain)
    Posts
    1,072
    Quote Originally Posted by bostondad View Post
    OxSquidy,
    Google won't let me access this spread sheet...any suggestions?
    I can only think that you have no gmail account. I wasn't sure it was needed but i see it logical. It's free, reliable, cool and will get you on board to work with their usefull tools. Go!

    EDIT: it seems that publication didn't work the first time. Now seems to be solved! My apologies.

    And for the rest of the people...don't let research and future down. It's us.
    Last edited by 0xSquidy; 02-23-2010 at 07:53 PM.

  9. #69
    Senior Member Leo's Avatar
    Join Date
    Jul 2001
    Location
    Yankton, South Dakota
    Posts
    4,005
    I missed a day and all this great action going on...

    I think most here are in agreement that we want clinical trials funded and yes if some basic research need be set to the side for now to make this happen so be it.

    Having said that I think it would do us well to point out The Lone Star Paralysis Foundation along with the SCIUSAnet is raising funds for planned trials.

    http://lonestarparalysis.org/displaycommon.cfm?an=4

    I have no attachment to them except for they seem like the top dog in the fight.
    http://justadollarplease.org/

    2010 SCINet Clinical Trial Support Squad Member

    "You kids and your cures, why back when I was injured they gave us a wheelchair and that's the way it was and we liked it!" Grumpy Old Man

    .."i used to be able to goof around so much because i knew Superman had my back. now all i've got is his example -- and that's gonna have to be enough."

  10. #70
    Senior Member 0xSquidy's Avatar
    Join Date
    Dec 2009
    Location
    Barcelona (Spain)
    Posts
    1,072
    Leo, please, i must insist. If we just keep putting ideas on this thread we are going to end doing nothing or doing it in a disordered and "epic fail"ing way.

    We'all agreed we can do A LOT, and it's visible that we want to do this. Now let's think the best way to do it. Is the best way to do this great teamwork by keep talking in a one-way thread in a forum one at a time? I'm certain it's not.

    We've already created some online documents that i think are the shuttle to the actions to come. To distribute them, to keep track of them, to maintain our own little network of work and feedback. We can chat, skype, wave... we can't pretend we are not in the 21st century, we have very usefull and free tools, let's use them. Let's be productive.

    Bostondad said once in this thread that i seem to be sprinting when this needed a "marathon" way of run. I didn't answer because i think it's just how it may look outside of my though process, but i'm well aware of the long run i have in front on my... i faced the wheelchair once in my life and accepted it, just like all of us did. I'm not going to give my back to this issue here. Yes, indeed this is a long run marathon, so let's be sure that we have our trainers well tight before sprinting like hell, we don't want to have a fall.

    Step one, team up.
    Step two, gather tasks.
    Step three, distribution and execution of tasks.
    Step four... dance!


    Just in case:

    Spreadsheet: http://bit.ly/chronicSCI
    Document: http://bit.ly/chronicSCIdoc
    (by now, there's a spot to throw fundraising ideas at the bottom)
    Team contact: http://bit.ly/chronicSCIcontact



    Quote Originally Posted by Leo View Post
    I missed a day and all this great action going on...

    I think most here are in agreement that we want clinical trials funded and yes if some basic research need be set to the side for now to make this happen so be it.

    Having said that I think it would do us well to point out The Lone Star Paralysis Foundation along with the SCIUSAnet is raising funds for planned trials.

    http://lonestarparalysis.org/displaycommon.cfm?an=4

    I have no attachment to them except for they seem like the top dog in the fight.
    Last edited by 0xSquidy; 02-23-2010 at 11:27 PM.

Similar Threads

  1. Replies: 6
    Last Post: 04-27-2007, 05:14 PM
  2. Believe and achieve
    By Max in forum Spinal Cord Injury News
    Replies: 0
    Last Post: 11-28-2006, 07:15 PM
  3. Believe in yourself and you will achieve
    By ginny_richard in forum Announcements & Feedback
    Replies: 0
    Last Post: 06-22-2004, 07:05 AM
  4. He's got the ability to achieve
    By Max in forum Recreation, Sports, Travel, & Hobbies
    Replies: 0
    Last Post: 02-24-2003, 03:07 PM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •