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Need Collective Brainpower of this Community

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  • Need Collective Brainpower of this Community

    Hi All,

    I'm the Dad of a C5. I've recently found myself with some access to some billionaires, so I want to make the pitch to them that they need to put more of their charitable contributions to SCI research. To that end, I'd like to ask for any/all help in completing the attached chart. (I hope I attached the PDF, I can email anyone the Excel version) It is designed to show that SCI patients are getting the least funding per patient, but we won't know that until we can get the attached page completed. If someone wants to volunteer to be Project Manager for the data collection and then other volunteers can take specific sections, that would probably the best way for this to get done. In the process, anyone with an idea for making this data chart better, please suggest those on this forum or to whomever volunteers to be the Project Manager. I think anyone who takes the time to look at this chart will see the value of it once it is completed and how I could use it to make my appeal to the two billionaires I now have access to.

    Thanks - Dave
    Attached Files
    Last edited by DSternberg; 11-07-2019, 11:10 AM.

  • #2
    I've sent you a message on this. I can introduce you to someone who would be able to help and has all the materials you will need.


    • #3
      I'm curious, why the comparison with MS? Are you looking to show that MS receives significantly more funding or are you including it as something else affecting the spinal cord? Or do you have some other reason in mind?

      Also, here is a site with some stats, and links to other sites with additional stats:

      The site answers the first line right off the bat. However, I'm always concerned with the accuracy of some of the data from some .com sites. I prefer .gov stats, if possible, so that info isn't over stated.

      Also, I'd like to be involved, but I'm concerned about the time commitment as project lead. However, I personally feel what you're doing is the way to go. I've been thinking about how to engage some of these billionaires myself - but you've already got access. You're in the door. The small amount sci receives from the government annually concerns me. But something is better than nothing. Maybe the data, along with some videos of the new things happening might move them to assist in a significant way.

      I'll keep looking for more info to fill in and expand your chart. I think the census bureau has some of the data needed, but I'll have check.


      • #4
        UAB has an entire archive of data dealing with this. The link to the archive can be found on this page:

        Here is the link to data for 2019:

        There are a number of pie charts and tables compiled by UAB in the above link. The visuals may be helpful to the folks you are speaking to. Also, if you don't have to reinvent, why do it - right?

        Most of the info is probably gathered through surveys. Which says to me we'll never have a completely accurate assessment. But hey, something is better than nothing.


        • #5
          If the SCI research community would work together and if we could get, say $10 billion, we could cure paralysis in likely 5-10 years.
          I think CDRF has raised a grand total of around $128 million.
          T3 complete since Sept 2015.


          • #6
            I would wager that the Christopher & Dana Reeve Paralysis Foundation already has such information. Have you contacted them?

            The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.


            • #7
              Originally posted by Mize View Post
              If the SCI research community would work together and if we could get, say $10 billion, we could cure paralysis in likely 5-10 years.
              ... or less!

              Money, money, money, money... Money!


              • #8
                Originally posted by GreaseLightning View Post
                ... or less!

                Money, money, money, money... Money!
                There is also a big problem with the quality of research. In most cases, published studies cannot be replicated by an independent lab, so putting more money in SCI research without first fixing (at least in part) SCI research may not produce the results we want/expect
                In God we trust; all others bring data. - Edwards Deming


                • #9
                  Thanks to all who have responded to my post. Have no desire to play one disease/condition off of another, just wanted to see what the data would show. IN the end, I have one opportunity to pitch this, so I like to gather as much data as I can, then figure out what makes the most compelling case. I will look at the resources suggested, thank you again.

                  Having watched my son suffer for the last 6 years, I feel for each and everyone of you with an SCI. Anything I can do to help him get better care and new treatments, I hope it can help each of you. Thanks again - Dave