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    • #19054
      Richard
      Participant

      With the lack of attention ALS gets from the media, US Congress, the FDA and lack of treatment options, perhaps ALS should mean A Looked-over Sickness.

       

      Richard

       

    • #19059
      Anonymous
      Inactive

      Sometimes I get the feeling that they want to keep researching because it pays the bills. If they find a cure for ALS, how many people would have to find something else to do?

    • #19066

      > If they find a cure for ALS, how many people would have to find something else to do?
      There are hundred of thousand diseases, even in the realm neurological diseases there are roughly 500 of them.

      My guess is more that ALS scientists are looking at the wrong place, and are not even the right experts for the job.

      IMO what is needed is doctors who look at the body as multiple overlying systems.

      We do not need (at least for neurodegenerative diseases) experts who look at molecular events. This road was exhausted for Alzheimer, Parkinson and ALS since the dawn of molecular biology in the 1980 without any results. Even the so called find of ALS genes is a joke, how to imagine that a genetic disease would strike only after 5 decades?

      Now nobody discusses anymore of the “Alzheimer gene” the APP. But every scientist is aware that what replaced it since the 2000, the beta amyloid plaques, is not the cause of the disease.
      In Parkinson, the best result was obtained thanks to a device! Imagine that! Not an obscure molecule, but two probes buried deep in the brain!

      It’s time that we have that sort of revolution for ALS. The only way to make it happen is to ask that funding goes to medical research, not to biological research.
      We need to make scientists thinking about patients, not about molecules.

    • #19073
      Amanda
      Keymaster

      I think looking into genetic related issues is definitely one way to go. They are in clinical trials for a treatment for the SOD1 mutation and so far the results have been promising. I think exploring all the possibilities is important.

    • #19091
      Richard
      Participant

      Perhaps “A Lack of Support” might be a better acronym for ALS.

       

    • #19094
      Aloha Frank
      Participant

      Right on Richard. A Lack of Support says it all. Don’t count on any improvement during our limited lifetime.

    • #19112
      Anonymous
      Inactive

      IMO it may not be a genetic cause of ALS as it is so much a potential to get it that is genetic. What triggers it is what they need to figure out, and then, and only then, can they take steps to prevent it and reverse the effect (or “un-trigger” the progression). Wallerian degeneration and dying off of neuromuscular junctions guarantee that recovering atrophied limbs cannot be returned, but prevention of the loss of neurons that connect to the muscles is what will stop progression. I do not think that will be found in biological study of DNA.

      Whatever it is that turns on ALS needs to be found. What genes we have that make us susceptible to the condition will probably never be changed in the near future.

    • #19115

      > What triggers it is what they need to figure out,
      Scientists have figured it out. It’s a “multifactorial” disease, there is no single cause.

      That’s why Biogen stopped trying to design a single drug and aims now at targeting tiny groups of patients with its SOD1 with Tofersen (BIIBo67) and C9orf72 with BIIBo78, as well as with BIIB105 and BIIB100. In each cases only a subset of pALS are targeted where there is a clearer mechanism of action. That’s their official strategy at the moment.

      There are 120 genes somehow implicated in ALS (a UK database lists them). And each of those genes has multiple mutations each with wildly different effects. And most of these mutated genes are not specific of ALS.. There is no ALS gene! That is a dumb concept.

      Tofersen is an ASO. It does not repair our genome. An Antisense Oligonucleotide therapy is a technological cousin of the mRNA vaccines. It aims at reducing the amount of deleterious SOD1 produced by cells. But normal SOD1 is a powerful anti-oxidant that without it we would die in a few days. Which means SOD1 people getting Tofersen will have to massively supplement them with anti-oxidants.

      It’s probable that for each of other ASO from Biogen some compensatory mechanism would be have to be applied. You cannot reduce the amount of protein synthesis without side effects.

    • #19402
      Dagmar Munn
      Keymaster

      Anyone else feeling slightly irritated when hearing the Governors of different states announce they will give a million dollars away to someone who gets vaccinated? Not only are the “fence-sitters” getting awarded for their procrastination (why did I get min so early and miss out?) BUT ALSO – – it feels unfair that we work so hard to raise funds for ALS research… and suddenly a million dollars appears as an incentive for getting vaccinated.

      Why isn’t this “extra money” being put towards things that will help our population? To help causes like ALS? ALS funding doesn’t have to always come from the ALS community or a famous rich person. Government allocates so little to rare diseases, but seems to come up with a million dollars pretty easily for other needs.

      • #19403
        Richard
        Participant

        I agree with you 100%!  Money could be better spent.  Giving an award to the COVID-19 vaccination procrastinators sends the wrong message is just rewarding bad behavior.

         

        By the way, my solution to the COVID-19 vaccination procrastinators is simple; if you’re not vaccinated and you’re hospitalized due to COVID-19, insurance shouldn’t cover the expense and instead make the patient pay out-of-pocket.

         

        Richard

         

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