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    • #18869
      Allen Lewis

        If Mark Zuckerberg, Jeff Bezos or Bill Gates, or one of their loved ones, contracted ALS today do you think we’d see a cure in the foreseeable future? The sad truth is that there are simply not enough of us potential customers to justify the cost of finding a cure, no hope of a return on investment. All we’ve got is a pathetic little pill that offers the prospect of a few more months of suffering before death on a ventilator. The only individuals who actually possess the means to drop a billion dollars into ALS research are more interested in building flush toilets in Malawi.

      • #18870

        There are many rich people with relatives that have been stricken by ALS.
        And many money went into ALS research. In the few past years there was ALS Prize4Life who funded prices to find a cure for ALS. Somehow the research they funded resulted in a therapy for SMA (Zolgensma). But they stopped funding research, their conclusion was that what was missing was the capacity to translate laboratory research in clinical results.
        Every year there are ~12,000 scientific articles about ALS with a good proportion claiming to having made a breakthrough.
        If you look at patents (writing a patent is costly) there are thousand patents that claim in their title to cure ALS.

        But making an arcane scientific article or a patent is not the hardest part. The hardest part is about proving that it works in human beings. As in other diseases, there is a ratio of 1 to more than 1000 between a proposed drug by a university and a drug on the market.
        The responsible of this sad state of things is not the bureaucracy of FDA as often claimed, it is the awful noise of scientific publications that are misleading, wrong and/or unreplicable.

        We need to fund ALS doctors, not molecular biologists.

      • #18877

          ALS research is a world filled with idea’s. The work they do must be done on non-humans initially, and when they get to try them on humans, they have been through a lot of time and money to get to that point. The heartbreaking thing is that the work with animals usually does not transfer to humans we much as they hope it did. It seems like molecular biologists are not doing much more than insuring that they have grants/incomes in the future to fund research. It seems like we get pumped full of hope and then…let down because it failed. That happens over and over.

          But in reality, Edison said it first, they are finding thousands of ways not to cure ALS. It only takes one to get it done. When they find that one way, we will all jump with joy! Never give up hope.

        • #18892
          Kathy stitz

            Thanks John.  It’s hard to maintain hope but I hope they find a cure for all of us pALS who are suffering every day.

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