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ALS Breakthrough Vs Disinformation – Interview

John, I have read your last post called „Brutal and ruthless truth about ALS“. Please tell me something about it, what do you think you have done?

I have done the right thing.

Well, are you sure? Your view is very critical and I am not sure if it will be well understood.

Yes these concerns were expected. It is true that my view is very anti-system, very critical, controversial but also real hope and changes bringing/offering.

Why do you think your view on ALS is actually promising or even possibly breakthrough leading? Do you realize that for people it is extremely hard to just imagine this moment is here and mainly – all those mistakes, that goes very deep … and that´s not what people hoped for.

This all is explained in my other posts but to answer you – why should I convince someone my view can be correct? Do you think there are 100+ great theories on ALS with detailed action plans what to do so we should have hard times with picking and funding the right one? Are you serious? There is nothing like that so every theory, I repeat every theory has to be actioned, which means reviewed and then verified using experimental studies under public supervision. Mistakes are inherent part of our lives … I am not afraid to point at problems, I am ready to embrace errors done, I am ready to embrace new fresh views and those system problems are very deep, that´s true.

And wait, I will remind you a real description of one situation … Sorry for this intermezzo but it is important. It is related to Pete Frates, I hope you know this name, you should know this name.

“It’s coming down to a matter of dollars and cents,” Pete told the crowd. “If we can get enough money into ALS research, I don’t see why we can’t make ALS go the way of polio and other diseases that we so fortunately have gotten rid of. I’m confident and hopeful that we can make ALS a thing of the past, and at one of these events we can just have a big party to celebrate the ending and the curing of ALS.” Like he had done in locker rooms in both high school and college, Pete created hope with his words. There were smiles in the audience and a sense of pride and accomplishment among the attendees.

His acceptance speech was followed by a panel discussion among biochemists, clinicians, and pharmaceutical executives. Nancy and John sat in the audience, following the conversation with rapt attention. As the discussion wore on, Nancy found herself lost in a labyrinth of scientific terminology. “I tried listening, but most of the content shot way over my head,” she recalls. “I avoided every science class in high school and college, but I knew body language, and I could tell that these panelists were unfamiliar with one another.”

The researchers appeared to be working in silos, where compartmentalization stymied progress. Nancy quickly raised her hand. “I’m Pete Frates’s mom. First, thank you very much for working on ALS; it means so very much to us. But I’m listening to what you’re all saying, and there doesn’t seem to be a lot of collaboration going on here. Not only that, but where’s the flip chart with the action items and the follow-up and the accountability? What are you going to do once you leave this room?” The room grew silent. The attendees turned their attention to the panel members. The collection of experts had nothing to say. Later in the hotel lobby, Nancy voiced her grave concerns to her husband. “Did you see that, John? She asked, dumbfounded. “They have no plan. They are treating this like an academic exercise, while our son is dying. It’s almost like they feel that it’s a hopeless cause.

[Sherman, Casey; Wedge, Dave. The Ice Bucket Challenge University Press of New England]

Yes, the ICE BUCKET CHALLENGE. Pete Frates, Pat Quinn, Anthony Senerchia. They were able to raise more than 250,000,000 dollars. What a story it was …  

Yes, what a story, but I hope you know why I am citing that text here when you are asking me a question „why do you think your view on ALS can make a difference?“.

Ok, sure, there is not many options. But that was 10 years ago, I am sure times are different now. Don´t you think?

Are you sure about that?

Of course I am not sure, I believe in that. That doctor, Richard Bedlack mentioned those new directions.

Hmm, ok, so you believe. That´s nice. So what do you think is the most notable thing/event happening since that time (2014) which has that ALS cure potential? And what do you say on those incurable/reversal cases or weird use of statistics? Isn´t that highly suspicious and strange?

John, I don´t know. Please don´t ask me these questions, this is a responsibility of all those research teams. I am the one who is asking questions here, right? We need to believe and hope all those researchers work on meaningful projects and that they actually do collaborate, that they have proper funding and that this whole thing is moving on.

I disagree. Time for a change has come again to move the project forward. You cannot just blindly believe, you need to switch to trust and verify mode, you need to introduce the accountability which Pete´s mom was asking about. You need to start asking questions and start thinking in different and bigger contexts. Public has to accept its great deal of responsibility. Blind belief that providing money is enough appears naive. The best things are for free, forget money, forget cure which may cost 500,000$ and still will not cure. This is 21st century, new approach to humanity and new way of thinking about global problems.

And by the way, this theoretical aspect is just a bonus. The main value if my story and story of others who survived ALS attack. It is just pharma industry, today fooled media and lack of trust in public which makes us more cheaters or unethical fools. I hope Dr. Bedlack confession on ALS reversals and 52 people he knows about will help with changing this medial picture of ALS. The description of the ALS problem by all these people (including myself) who are not part of the official pharma industry and medical system is mind blowing. Once people get more united and establish wide collaboration, things will change.

On the other hand if people will continue to stubbornly ignore this opinion camp and will continue in fund-raising and believing more money will mean better service, then they will get what they always got (expensive ineffective drug #66+).

So are you saying that if Nancy Frates asked this question again you would have something to say, you would have direct answers what to do right now?

Exactly. I know where to hit with the hammer. Of course it could appear my strategy does not work at all but that´s life. However something is telling me I could succeed, I would bring something new to the table where money and profit does not play any role. I cannot imagine I would not add any value … The problem is that people are brainswashed and think that magic drug/injection will cure ALS. I know that only immune system has such power and that´s what I would be focusing on.

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This entry is part 7 of 15 in the series Project Prometheus 21

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