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    • #19382
      Richard
      Participant

      Hi All,

       

      Just an fyi…

       

      Sponsored by I Am ALS, a website identifying ways you can raise awareness, increase ALS research funding, pass legislation and beyond.

       

      Move the <> circle from left (I’m new here) to right (This isn’t my first rodeo) to view different change opportunities.

       

      Life does not get better by chance; it gets better by change.

       

      https://iamals.org/action/

       

      Richard

       

    • #19397
      Jim
      Participant

      Hi everyone, Wanted to tell you I had a childhood friend in Florida, even though we lost touch with one another, I still heard about his wife passing away a few years ago. I looked her name up on the internet. She passed away from ALS. Her obituary overall says “She was a wonderful mother to three small children and she put up a noble fight, her soul is with God and she now Rests in Peace!” She died one year after diagnosis! I’d never heard of ALS until I read about her. What striked me so deeply is that she died so quickly. What an empty space she left behind. And horribly a year or two later I was diagnosed with ALS.

      Depending on which webpage or article you read, statistics may differ some. But looks like someone dies of ALS every 90 minutes. Seems like ALS is not as Rare as many think! What is Rare are viable treatment options. And I sure hope you have good insurance, last I checked, these drugs are far from cheap. What has been Rare is Awarness, when over half the American public is still unaware of ALS, certainly hope Lou Gehrig day changed that! We all know thousands of Americans have ALS at any given time and these numbers are growing!

      Do you have time to take break? Will you live long enough? My friend’s wife didn’t! It’s Ok to take a day off or a few days off. But keep in mind within that time more people are suffering and have died! When I was in college, I knew the importance of taking a break during exams, but always got back to business pretty quick. So, let’s not think about break time, let’s think about taking action and doing it! Everyday is ALS Awarness day until there is a cure! The below link is a way you can directly be involved in making positive changes! Thank you Richard for originally posting the link. Time is not a commodity most of us can afford! Jim

      “Take Action – I AM ALS” https://iamals.org/action/

    • #19399
      Jim
      Participant

      Hi Everyone, Just completed a few important forms online at below link. Just filled in my name, so quick! “Iamals” really already did all the hard work! I took action on the ‘Promising Pathway Act and ‘AcceleratIng Access for Critical Therapies for ALS. The website is really Fantastic, well organized and very easy to navigate through! Take a look! Thanks again Richard for originally posting the link. All the Best, Jim

    • #19405

      I applaud at every initiative to change the current situation, but my opinion is that ALS research does not need more “awareness” from the general public, nor more funding.

      What ALS research needs is to change entirely of paradigm, and that’s not going to happen anytime soon.

      As long as ALS research is done exclusively on neurons (it’s only recently that it looked at other nervous cells) it will fail at finding a cure for ALS.

      And it’s not simply a question of looking at astrocytes or other macroglia cells types, it is of the utmost importance to look at muscles cells.
      This disease is first about muscles.

      If it was a disease exclusively of motor neurons as we are told by most (not all) scientists, why should it starts locally then progresses? Why would sensory neurons, which share most of the nervous tracts with motor neurons, not be impacted? Most ALS scientists are molecular biologists that are not interested at all in physiology.

      ALS organizations should fund only scientists that work either on “ALS as a distal axonopathy” or “ALS as Dying-back axonopathy” which both are neglected research domains.

    • #19406

      I applaud at every initiative to change the current situation, but my opinion is that ALS research does not need more “awareness” from the general public, nor more funding.

      What ALS research needs is to change entirely of paradigm, and that’s not going to happen anytime soon.

      As long as ALS research is done exclusively on neurons (it’s only recently that it looked at other nervous cells) it will fail at finding a cure for ALS.

      And it’s not simply a question of looking at astrocytes or other macroglia cells types, it is of the utmost importance to look at muscles cells.
      Most ALS scientists are molecular biologists that are not interested at all in physiology.

      If it was a disease exclusively of motor neurons as we are told by most (not all) scientists, why should it start locally then progress? Why would sensory neurons, which share most of the nervous tracts with motor neurons, not be impacted?

      ALS organizations should fund only scientists that work either on “ALS as a distal axonopathy” or “ALS as Dying-back axonopathy” which both are neglected ALS research domains.

      • #19408
        Richard
        Participant

        Hi Jean, thanks for your input.  It’s great to hear different perspectives. They say that If everyone thought the same way, then only one person would be needed to solve a problem.  So hearing different ideas are valuable.  Since an idea without execution is just a dream, I’m presuming you are taking active steps in promoting your idea so that a cure can be found.

         

        Richard

         

    • #19410

      I’m presuming you are taking active steps in promoting your idea so that a cure can be found.

      I try to do my best.

      I wrote a book about the state of ALS research, and have exchanged by email with many scientists. Every week or so since 3 years I report on neurodegenerative diseases on my web site.

      I have also asked for funding (without success) for a TDP-43 genetic therapy (TDP-43 dysfunction is not specific to motor neurons).

      On another ALS forum I discussed about the possibility of an TDP-43 therapy based on Cell Penetrating Peptides as a low cost alternative to a genetic therapy. I know because I exchanged with them, that several scientists and biotechs are interested in research area. For example Promis Neuroscience has PI for a TDP-43 intrabody. Other scientists are looking at PROTACs to achieve a similar goal.

      You know there is no lack of research on ALS, every year thousands scientific articles and patents are published. More than 700 clinical trials have been conducted on ALS. However as you know, all these gigantic efforts produce nearly nothing. If we don’t ask if scientists are looking at the right place with the right tools, the same situation will continue for decades. For information in Alzheimer disease, they did more than 2500 clinical trials and still have no clues about a treatment.

      This is madness and it shows that if we do not make something strong in the case of ALS, scientists will continue to produce arcane articles, will continue to patent and do unsuccessful clinical trials until the end of time.

      We need to talk to black swans in the ALS scientific world, there are some interesting people over there, so hope is not lost.

    • #19411

      I just want to add that the defunct ALS Prize4Life organization arrived at the same conclusion a few years ago.

      • #19412
        Richard
        Participant

        Hi Jean, your effort is impressive!  I’ve said this before in previous forum discussions that the definition of insanity is doing the same thing over and over again and expecting different results.  Your Alzheimer statistics are very disappointing. Hopefully your perspective will lead to efforts with more promising outcomes.  Keep up the great work and continue to find those black swans!

         

        Rich

         

    • #19409
      Jim
      Participant

      *Jean Rouzic you are a valuable asset here and the words you text about open many doors!

       

      *Dying-back axonopathy, Wallerian Degeneration and Compartmentalized Microfluidic Devices.

       

      “Axonal regeneration and sprouting as a potential therapeutic target for nervous system disorders Marshall KL, Farah MH – Neural Regen Res” https://www.nrronline.org/article.asp?issn=1673-5374;year=2021;volume=16;issue=10;spage=1901;epage=1910;aulast=Marshall

       

       

      • #19415
        Dagmar Munn
        Keymaster

        Jim, That is an interesting article. I believe that one of Dr Bedlack’s theories on ALS “reversals” is that their axons sprout and make compensation connections. He points to this happening in the case of those patients who recover from polio. Worth pursuing!

    • #19417

      Thanks for the kind words!
      This article is very interesting.
      In my book there is two small parts toward the end, where I discuss of:
      * Stopping the disease. That’s where I describe a possible TDP-43 genetic therapy, and it is state of art science. I discussed about it with a prominent ALS French scientist from the team who won the $1M from Prize4Life. Now I think this goal can be achieved in a better manner with peptides or PROTACs. Above I told of Promis Neuroscience, but JP Julien’s team has developed an antibody against dysfunctional TDP-43. Other companies are looking at intrabodies (like in my book’s proposal). A team in Case Western University (Gao and al) has developed a TDP-43 therapy with CPPs, but I do not think they intend to make efforts to commercialize it. That’s a shame, because it is a very simple therapy that would work for most pALS.

      * Healing from the disease. There I described efforts to replace neurons in vivo. Contrary at one may think, there are scientists with that goal and even some encouraging results. To quickly summarize it, they use variations on the Yamanaka’s factors to either heal neurons and make them sprout new axons or to replace a died neuron with a new motor neuron derived from some close cell type, like the astrocyte. In this last case a new axon as still to be grown, as astrocytes have only normal, short dendrites. For example, Check that, it’s mind blowing.

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