Maybe they will only need 2 scientists and one year if they have a good idea what they’re looking at.
Ultimately, it’s only one study. One study might be enough to provide us some useful information, but in order for the syndrome to be taken seriously enough to warrant the level of funding necessary to provide a therapy and/or medical community recognition as real, we would need about 5-10x that many agreeing. A study working out now would be the beginning, not the end.
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No offence but you’re just making up numbers. What do you suggest then? If you want everyone to do more what do you want them to do? I’m sure everyone is open to ideas. I would like to do more also. No one knows exactly what it will take, but it will be a lot easier to make a cure than to find the problem imo. Crispr is being developed now in the ways we would want it used supposing the methylation hypothesis is correct. People say it’s going to take years to use but the clinical trials are rolling out and assuming nothing goes wrong scientists are going to want to be the ones to cure things. Also people are even walking around FDA regulations to use it. I don’t know I prefer to be positive.
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The guys with a better technical understanding (awor and axo) do admit that we will need a couple more studies at least. Doesn’t mean Baylor wouldn’t give us some good direction and possible therapeutic treatments.
Also doesn’t mean they will take as long as Baylor. If they are set up with contracts in place and not gone the academic route it would give us the data lightning quick in comparison to Baylor from what I know.
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We need to do everything we can to get all affected groups unified and drawing public attention. Then we can get funding for studies. Once we have a multiplicity of studies that show what we have is real, then we can get funding for developing therapy.
We should have embarked on that journey a decade ago. Instead we sat, complained, assumed that because we were victims and the world owes us then someone would automatically come to the rescue if we just thought positively, told ourselves we knew a lot reading about herbs on the internet and that everyone who had tried and failed with those herbs previously was just doing it wrong, and now we are at a point where a generation will have lost the opportunity to have healthy relationships, kids, and purpose in their lives beyond solitary entertainment.
Generation after generation will suffer the same fate until we change and do everything in our power to unify, get the word out, supply scientists with data, get their work funded, make the research happen.
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It would be cool to see the big names in a video like Awor, Axo, Greek etc.
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It occurred to me, too, why don’t they start with themselves.
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This is what I have been arguing for - we need to forget about Baylor and start initiating research to replicate parts of Baylor, which can easily be done, as soon as possible. This is also what was proposed in one of the threads the admins deleted, as I describe above.
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Sounds good but how do we draw attention. There’s the youtube video but I didn’t take Fin. It would be good to find a youtuber who covers dark stories and such. This would make such a good documentary. Maybe we just need to start contacting people with our stories.
On stories, I think the first step is to see them all and know what we have. Once we know what we have (or at least what we are getting), we will be able to decide what to do with it. I am very busy and intend to help with outreach to other groups (as I have already been doing), but I will not be able to assist with organizing video project. There are a lot of members here so I hope someone takes initiative. Non-fin stories are great. Non-fin stories here help seed outreach to other groups.
@Jaime is the main guy for our video project, please speak to him so we can all work together.
Together we are stronger and will get more done.
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How many people have you got for this so far?
Maybe for the purposes of having a more concrete concept of what to go for, we could think in terms of eventually being able to publish our stories via a medium such as Vice. If you look at Vice, they are basically documentaries highlighting social problems. Maybe we could go for having the quality of material to eventually be able to make a Vice type documentary. Something like when they report the stories of all the lives ruined by Fentanyl pouring to the US from China. Vice would only be one option. Point is it gives example to follow if we aren’t already knowledgeable on how documentaries work.
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@bunny88, it’s my impression that a small number of people have agreed in principal to make a video - but that we haven’t got 6 confirmed yet, which is the number we are aiming for as a first run.
They already published about it didn’t they?
They published a story about Finasteride.
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Maybe people could start with rough drafts such as brief videos describing what they wanted to do with their lives, what their hopes and aspirations were, what they are doing now instead, how their health problem has been a setback for them, what they will have to do if a cure doesn’t arrive within a certain timeframe, and what they would alternatively be able to do if it did. Just quick 5 minute videos for now to get an idea of what we have to work with and get juices flowing.
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We only need people to agree to take part, we have everything else worked out.
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Why don’t you do it too? Why don’t administrators and mod do it too? We’re not criminals! We are victims! I live in a small town, a video like that would make me the laughing stock of the country, and I would be willing to do it too. Here we talk about foundation, fundraising, but we don’t even know the names of those who manage them. We know nothing.
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