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  • #16
    Well said and thanks for saying it Rick, I've been having this conversation a lot these days.

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    • #17
      First, it will fail stray without organizing.

      And there will not be any big money and strategies without doing so. But one could always hope.

      But if organized, more money is and could be gathered if working from the inside, and more important if so, to make the medical research systems more research and clinical trial speed up friendly, by positioning ourselves.

      I personally don’t anymore believe in single ideas swada, no matter how good they are and how to do things etc. There has been tonnes of that in the past - what I do believe in, are to get involved in the processes where decision-making is done.

      Folks, there are no short cuts when it comes to fix chronic SCI, stop living in a dream world.

      Comment


      • #18
        Originally posted by rjames View Post
        ...
        Here are some of the steps that I see need to take place:

        Come up with a solid proposal to present to foundations
        Recruit membership from the same
        Understand potential overall budget
        Develop Scientific review board
        Solicit chronic injury pre clinical development proposals with mile stones and timelines
        Review proposals and understand cost to complete project
        Committee to vote and select which pre clinical projects to support

        Here are some of the areas I think the oversite committee would focus on: (after we get something in the pre clinical pipe line)

        Create awarness for the need of research funding though a media campiagn
        Create National/International fund raising campaign
        Work to develop relationships with big Pharma to fund clinical trials based on the success of the pre clinical results/approvals
        Develop plan to lobby health insurance companies to support the coverage of these treatments and the necessary rehabilitation.
        ...
        Rick
        A clear mission statement backed up with specific objectives and methodologies to obtain the objectives will help focus the 'committee'. You aren't going to do this alone. There are many people here that agree that the efforts to cure spinal cord injuries would be more effective if they were more coordinated. Figuring out a good way to go about coordinating will not be easy but I believe with the right group of people working together it can be done.

        I suggest putting some effort into a mission statement. Get some feedback from people you respect.

        You have offers from people to help and maybe you can start taking people up on the offers now. Have someone start collecting names, areas where they would like to contribute, and what skills they bring to the table.

        I'll help. I am willing to put in a two hours a week for two months. I can use a computer, am reasonably proficient with office productivity software (word processing, spreadsheets, presentations).
        Injured 7-22-06, T-11 T-12 complete. [Holds up cardboard sign] "Will work for returns."
        2010 SCINet Clinical Trial Support Squad Member
        Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature.

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        • #19
          my "cure in 5 years" well is dry also. it seems to me that we can donate here and there, but we seem to be donating to nothing that is progressively working towards a "cure" for spinal cord injuries. It would be nice to find one place,person,or thing that just concentrates on helping US so we could all pool our concentrated effort in to helping US. I put "US" in capitol letters because we as a group do not care about politics,religion,money,economy, etc. etc. all we know is when our eyes open every morning we will drag our ass in to a wheelchair (sometimes covered in our own urine or the ever loved bowel movement) and start our day in a world that has nothing but limits on employment, accessibility, and enjoyment. Seems there is no limit on frustration, anger and reasons to not make a "cure" #1 on the list. Who here would not give up the last 20 years of their life to go to work, walk up stairs and then come back to a home they could afford and have normal sex with their spouse? give me that 1.....if i could bold print and underline in italics....that 1! place we need to pool our money I would eat spam and lawn clippings to donate all my time and effort to it. don't talk to me about miami projects and reeve foundations..etc.etc....they have had their 5 years.. apparently lip service and "social awareness" does not help me care for my children or put food on the table or make my days on earth any more enjoyable. Life in a wheelchair sucks no matter how rose colored the glasses you are wearing. where do we go to help US? sorry if i seem mad. i love my wife and my children, but this last statement defines me and a few other 100,000 ( don't take this as sexist racist,republican,angry or whatever). I have to go tend to my 2 beautiful 9 month old girls that were born through vibration therapy and electroejaculation and finally sperm extraction from the testicles (90% out of pocket) and IVF (i am guessing $10,000 each)in my $3,500 ultra lite wheelchair that may last 3 years at 2 a.m. after i pee through a $1 tube for the 8th time today after taking $30 worth of pain medications for nerve pain, hoping I don't crap myself while reaching in to a pain in the ass "accessible" crib because my wife works nights as a nurse for the sole reason I had to leave my $100,000 a year job that i am still paying college loans for.......get the picture? this is bull shit........where is the 1 ONE can you hear me? 1 place we ALL need to concentrate our efforts?

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          • #20
            rjames I am with you. i can not imagine how painfull this is as a parent to have to go through....my parents went through raising a son that played football,baseball and wrestled and raced cars to see a guy that can't change a damn light bulb.....i am in the rjames fan club.

            not to make light of this subject, but RICK JAMES BITCH.

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            • #21
              Lief: All I have is hope...what else is there?
              I realize there is no short cut to fixing chronic SCI, my hope is to try to organize and focus our efforts to move the most promising work to trials sooner than later.

              As you know the main research funds are focused acute injuries not chronics, we need to use what funds are available for chronic research efficiently and by having a community wide focus and plan I believe we can achieve that.

              Faster Now:
              I agree on a collaborative effort, no one person can accomplish this.
              Let's get started.......
              I agree with you on identifying a mission statement and formulating a business plan that makes sense for everyone.

              I think anyone interested in helping should PM use their emails and we can stat working on this outside this forum.

              Smirking1:
              I am Rick James B*tch

              Comment


              • #22
                we are all in this totether so is some one going to set some thing up and push on if not we will here in a other 5 year's or more i susgest some one set's up a supports culb get's the money in than we give can give it to the best trial's going so than we are than up to date of what is going on than we might get human trial's a lot faster
                AS I SIT HERE IN MY CHAIR . I LOOK OUT UPON THE GROUND .I WONDER WILL I EVER GET UP AND WALK A ROUND ??


                http://justadollarplease.org

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                • #23
                  hi rick and others,

                  i've started reaching out to some smaller foundations with this concept and would suggest others do this, i would bet theres a small group near you.

                  as for chronic research the main players are davies and kierstead is that not right?
                  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."

                  Comment


                  • #24
                    i will give my left nut and pinky toes to kierstead if that it what it takes. out of all the propoganda here he seems to be working for US. it is a shame he has to spend so much time on the road beating his own drum to keep the $ flowing.....if i could give anymore to someone it would be him.

                    Comment


                    • #25
                      hi smirking1,

                      save that one vital nut

                      what u could do is contact NY's SCI Research council, i don't off hand know the site

                      but anyway let them know how you feel and strongly urge them to find away to help these chronic guys, i am pretty sure money needs to be spent in state, but some researchers from NY could contact these guys to maybe do some leg work.

                      i think it's called working together

                      screw state lines


                      Originally posted by smirking1 View Post
                      i will give my left nut and pinky toes to kierstead if that it what it takes. out of all the propoganda here he seems to be working for US. it is a shame he has to spend so much time on the road beating his own drum to keep the $ flowing.....if i could give anymore to someone it would be him.
                      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."

                      Comment


                      • #26
                        Originally posted by Leo View Post
                        hi rick and others,

                        i've started reaching out to some smaller foundations with this concept and would suggest others do this, i would bet theres a small group near you.

                        as for chronic research the main players are davies and kierstead is that not right?
                        Don't forget the Neurogel Project (Some very serious people are involved: Dr. Decherchi, Dr. Sykova, Pr. Gorio, Dr. Borgens and more...) www.neurogelenmarche.org
                        gretchen 1

                        Comment


                        • #27
                          Some great ideas here, thanks for starting this. As an aside, I think a thread, perhaps a sticky, detailing each foundation that supports chronic research may be a useful resource?

                          Will PM you Rick.

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                          • #28
                            Don't forget Dr. Young ....

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                            • #29
                              Sorry that I have not responded for a few days, my kid is keeping me buried with all of his stuff. He did another trialthalon over the weekend in San Diego with the www.challengedathletes.org foundation and now he's been invited to go to Florida next week to do the 1/2 Ironman World Championships, so we need to prepare for that, never a dull moment.

                              Anyway know that I am 100% committed to this and I appreciate the help from everyone that has volunteered.

                              There are a lot of great Ideas and feed back comming in and if you would like to help send me your email in a PM as we are going to get started in the planning off line via emails.

                              Let's Rock....
                              Rick

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                              • #30
                                Originally posted by rjames View Post
                                Lief: All I have is hope...what else is there?
                                I realize there is no short cut to fixing chronic SCI, my hope is to try to organize and focus our efforts to move the most promising work to trials sooner than later.

                                As you know the main research funds are focused acute injuries not chronics, we need to use what funds are available for chronic research efficiently and by having a community wide focus and plan I believe we can achieve that.
                                Hello Rick. I’m sorry, I didn’t mean to sound too negative above. I think what you are doing is great, I just meant to say you are heading for a lot of hard work, which btw is much appreciated. And I think there is more than hope, I think it is quite realistic to fix a SCI, and because of that I am surprised that not more peoples are working for SCI cures. I would imagine that we all would be like crazy having it here as fast as possible. Good luck with the organizing over there. I’m doing what I can at this end.

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