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  • How do I contribute?

    I've been paralyzed (c3/c4) for nearly 30yrs. We are FINALLY seeing some promising clinical trials but it's never fast enough. I've been searching for a way to make a meaningful contribution to getting us there. Would a fundraising entity be helpful? What kind of money is needed? Millions? Tens of millions? How about Lobbying? IDK. I understand some trials get held up due to lack of funds. Maybe some community support would help get those funds so things can continue to move forward. How do we identify who needs money?

    I'm tired of waiting

  • #2
    Our upcoming trial will cost 5.5 million. https://clinicaltrials.gov/ct2/show/NCT03979742

    Our Center- http://keck.rutgers.edu/

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    • #3
      I struggled with how to contribute in a meaningful way for a few years, and still struggle to know if I'm focusing in the right way. I could write a paper of my own on whats worked, whats not working, where I screwed up, what I want to do next etc etc.

      Clinical trials costs millions -> tens of millions depending on what it is, and how far down the path it is. The initial phases can be done with community/foundation money, but later stages will have to be funded by private equity or picked up by a large pharma (or similar for other spaces) who want to commercialise it.

      If you are going to go down the lobbying route, then I'd recommend reaching out to U2FP I know Matthew and the team have had success in this in some states, so maybe you could replicate where you are.

      If its about raising money, then it all depends on how much. For smaller amounts (< $50k) you are probably better finding a foundation whose goals align with yours. Alignment of goals is very important, but also you can tell them which projects you want the money to go to. For example if you were to pick Wings for Life, then they fund a lot of basic research, both acute & chronic, and both complete & incomplete trials - which if you are chronic complete means you might not want to fund everything. So you could tell them you wanted to make sure your money went to only the trials that fitted you.

      For larger amounts of money you could have a bigger impact in telling people which kind of trials you were interested in, or spend time speaking with researchers in the areas you liked and seeing if they had ideas they hadn't been able to execute yet.

      Or you could looks for companies who were trying to commercialise treatments and invest. This is an area that needs funding, a lot struggle to get the capital they need because mainstream investors don't see the market opportunity as big enough compared to other sectors. However I would be careful here, I've been led down a path of a promise before where they just seek investment after investment and never achieve the money needed. So make sure they have it funded to the point where something will be achieved before you do.

      I'm not surprised you are tired of waiting, my patience ran out after 3 years of waiting :-)
      Last edited by niallel; 06-18-2020, 11:34 AM.

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      • AreWeThereYet
        AreWeThereYet commented
        Editing a comment
        thanks for that input. I'll contact U2FP. The more I dig into this, the more I find a bewildering array of organizations and labs and advocacy groups.

    • #4
      Hi, AREWETHEREYET! i have the same incomplete injury for almost 30 years-a few months shy of 28. Unbelievable. Only 4-ap has helped me walk better, but 4-ap-3-meoh worked much better when I could buy them. I'm most excited about Renetx trial of drug in phase 2; also Nervegen but not as far along w/o fast track status..

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      • AreWeThereYet
        AreWeThereYet commented
        Editing a comment
        My injury is complete. I've heard of 4ap but never taken it.

    • #5
      [QUOTE=I'm most excited about Renetx trial of drug in phase 2; also Nervegen but not as far along w/o fast track status..[/QUOTE]

      Yes I also hope something good comes from these two trials.
      "I'm manic as hell-
      But I'm goin' strong-
      Left my meds on the sink again-
      My head will be racing by lunchtime"

      <----Scott Weiland---->

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      • #6
        The average cost of getting a drug on the market is $1 billion. I think it’s safe to assume more than that will be needed before we see an FDA approved cure.

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        • #7
          Originally posted by funklab View Post
          The average cost of getting a drug on the market is $1 billion. I think it’s safe to assume more than that will be needed before we see an FDA approved cure.
          That's what the Pharma industry will tell you, the majority or reports on this have been commissioned by their industry bodies. They often include lost money due to time, what else they could have invested in and loads of other things. Remember its in their interest to say it cost a massive amount, so they can charge a massive amount.
          Other studies done independently put the average cost a magnitude lower.

          It also depends if its a new molecule or not, the majority are not - but then again we will probably need one for SCI.

          Don't get me wrong, its not cheap, but if something succeeds at a clinical trial then they will be more than happy to spend this because of how much they will make from it. At this point the big money won't need to come from the SCI community it will come from Pharma.

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          • #8
            Originally posted by Jim View Post
            Our upcoming trial will cost 5.5 million. https://clinicaltrials.gov/ct2/show/NCT03979742

            Our Center- http://keck.rutgers.edu/
            Thanks for that info. This gives me some idea of the scope of the problem. Is it ok for someone to contact whoever is conducting research to ask them questions about how the study is progressing? Are there restrictions on the info while the studies are ongoing?

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            • #9
              Because of Corona, the trial is delayed until the Fall at the earliest. Prior to publication of the results, the general rule, is not to publicly report on the subjects' progress.

              If you PM me your email, I will add you to our eBulletin list. All info about the trial will be shared this way.

              Comment


              • #10
                Originally posted by AreWeThereYet View Post
                I've been paralyzed (c3/c4) for nearly 30yrs. We are FINALLY seeing some promising clinical trials but it's never fast enough. I've been searching for a way to make a meaningful contribution to getting us there. Would a fundraising entity be helpful? What kind of money is needed? Millions? Tens of millions? How about Lobbying? IDK. I understand some trials get held up due to lack of funds. Maybe some community support would help get those funds so things can continue to move forward. How do we identify who needs money?

                I'm tired of waiting
                What are some of the trials that you think look promising ?
                Canadian bacon is a fraud !!!!

                Comment


                • #11
                  https://clinicaltrials.gov/ct2/show/...&draw=2&rank=4
                  https://clinicaltrials.gov/ct2/show/...&draw=2&rank=5
                  https://clinicaltrials.gov/ct2/show/...&draw=2&rank=6
                  https://clinicaltrials.gov/ct2/show/...&draw=2&rank=8
                  https://clinicaltrials.gov/ct2/show/...&draw=2&rank=9
                  https://clinicaltrials.gov/ct2/show/...draw=2&rank=10
                  https://clinicaltrials.gov/ct2/show/...draw=3&rank=11
                  https://clinicaltrials.gov/ct2/show/...draw=3&rank=18
                  https://clinicaltrials.gov/ct2/show/...draw=3&rank=19
                  https://clinicaltrials.gov/ct2/show/...draw=3&rank=20

                  There's more... Who knows what will come out of these trials. But, we'll be getting some data and there's a fair amount of variety in cell types and or delivery methods used plus several pharmacological studies. We should know something in a few years about which things work and which don't.

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