I believe CRISPR could be used on genes we do have an understanding of inorder to fix things like muscular dystrophy or chronic fatigue. I’ve also read that CRISPR could possibly be used to modify BDFN to help with cognitive symptoms. possibly improving many PFS suffers quality of life.
I think they’re solid ideas but again, in the absence of someone taking charge and doing the work, they remain just ideas.
Things would definitely move along a lot faster, and we could do a lot more, if people contributed manpower.
It’s not that simple.
I am happy to help on those in any way possible and I am sure many others here are as well. I think of people like awor as being scientists who are already overburdened. So he can’t be a leader. But we need a leader. I can’t be a leader bc I’m already overcommitted in many other ways. But that doesn’t mean No one here would ever lead. Anyway, that was part of the idea behind crowdfunding. We could hire a leader. Someone to put 20 hours a week in or whatever organizing efforts, leveraging contacts, making things happen. If 500 people gave 50 bucks or something that would get us someone whose job it was to make things happen for 6 months. By virtue of it being their job, that person would bear responsibility for things getting done. That’s completely absent now and therefore we will never get results.
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One of my best friends studied film for years and has made several short documentaries. I haven’t bothered to reach out to her yet or the mods as we don’t have anything to work with. I hope everyone here will at least consider contributing after this discussion or it is probably just another thread with a bunch of ideas that will just die. Next time I post about the YouTube project I will mention keeping it private etc as per your idea. My hopes for this making any difference are pretty small. If you’re now contributing to the video project with this new measure then it worked.
As for writing an explanation template to post on other boards, @awor has written a pretty good description linking the drugs. I could write it but it won’t sound as professional as one if the other mods would. Hopefully they can chime in if they think it’s a good idea.
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What would be great to bring doctors we see is a letter , brief description written one, by a medical team. In the letter it would have carefully written words to draw their attention in and will entice engagement instead of disengagement. It will state the symptoms and what caused our declines in health. And then say something like instead of ignoring this try to pass it along or join in the help to find a treatment or cure. I’ve met with a dozen doctors. All of them were willing to listen , I’m sure would also read a letter that is written by a medical firm.
“Can we make some big push to get material that would incentivize scientific attention? Everyone needs to be behind something. Videos from men women and children on how it’s affecting their lives.”
With all due respect how can you say this but then say you can’t go public because of your career? I don’t think it’s pleasant or particularly helpful for anyone to go public with this condition. How can you say we won’t go anywhere unless people do X, Y, Z but then say you aren’t willing to do those things yourself?