Is there a way for take gene therapy

General Discussion
#1

is there a way for take gene therapy ?

#2

Nobody knows which gene to target at this point.

#3

is there a way for check genes ?

#6

Yes, but it is prohibitively expensive. This is the kind of research which we need serious funding for.

If anyone here is a millionaire, are you reading, Justin Bieber? Donald Trump? We can make this happen.

3 Likes
#7

I guess Baylor dropped the ball on this?.. Well, at least theoretically CRISPR could solve a gene issue if and when we ever locate it.

#8

Can’t we solve it if we all give 1000 dollars

1 Like
#9

If all if 500 people gave 1000 dollars, we could run some useful research for sure. But it wouldn’t necessarily give us the result we wanted.

This would be a lot easier if we had more publicity, more people prepared to tell their story.

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#10

I’m pretty sure we could get 500 pfs people to donate $1,000 pretty easily if we know where the money is going and the study will be somewhat useful. I would be willing to donate for sure.

1 Like
A letter to you, forum
#12

I’m interested to see how many people come forward on this

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#13

I have zero faith in a doctor taking half a mill and providing the results we need, rather i see him/her buying a brand new Lamborghini and riding off in the sunset.

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#14

This isn’t the domain of doctors.

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#15

I would donate. We all need donate.

#16

If I wasn’t broke and looking for a job I would certainly be willing to donate 1000 euros if i had some money to spare and if I could be more or less certain it would genuinely be used for PFS related research.

However, I do agree with previous skepticism of forum members that I find the PFS foundation incredibly untransparent and uncommunicative about what they’re spending time and funding on, if they even have any. I mean, I don’t care if I’m not absolutely certain about where my cash goes, but right now I would feel like donated money isn’t even used, because I have no way to tell what they’re even doing right now.

I think it would help to have some kind of visual oversight what the Foundation is working on at any given time and how much money there is saved up and how they’re spending it, even if it’s just in rough outlines.
A bit like those crowdfunding sites where you can actually see how much money has been donated to a certain cause, you know? Not unlike the survey goals visualized as bars.

Right now it just feels like we’re left to rot, and nobody except the mods of this site is really doing anything.

2 Likes
#17

if theres evidence and people are literally committing suicide couldn’t we make a gofundme page and get donations for research? people do this all the time for good causes

#18

It’d be more helpful if people were prepared to say what happened to them in a video on social media.

The funding needed for this research is unlikely to be funded by a gofundme alone and one of the biggest problems is in making sure we get the right scientists working with us, we need the right people with the right resources etc. Any scientist could take our money and run experiments, but we need to ensure any study we agree to fund is exactly tailored to our requirements. Not every scientist would want to do that. Not every scientist is suitable. We also need to ensure that we aren’t waiting too long for results.

In my opinion the community should forget about trying to pay to fix this (it won’t happen that way) and instead focus on raising our profile so we have a stronger case to qualify for funding and sponsorship.

1 Like