I received the letter below from the PFS foundation.
(Btw, it’s quite pathetic that being 4,000 people in this forum, they have less than 1,000 people on file -that means that the other 3,000 have never donated anything to the PFS foundation-. And probably part of this 1,000 people who have donated are not patients but family of patients).
[EDITED BY ADMIN. EMAIL WAS PRIVATE COMMUNICATION AND NOT MEANT FOR DISTRIBUTION ON A PUBLIC FORUM.]
I don’t understand how they can be talking about a cure at this stage when they still don’t know the exact mechanism of PFS.
It’s still worth it. We can’t afford to ignore any opportunities for people to study pfs.
It’s a small amount of money considering how many are affected.
Hmmm an interesting proposal. It’s impossible to know if this is a worth while venture. I’d want melcangi’s opinion on it. It seems like the best this study could do is validate the condition and basically provide a study proving why no drugs are suitable for PFS. I would generally only support a study at this point with a clinical research component. Otherwise this seems like a day late for this sort of study. But hard to know how reliable it could be without asking questions to the researchers to see what they could do with it.
I will happily donate to this fund.
People often want something for their money hence they’d rather waste hundreds of dollars on messiah protocols and pay Dr’s 300 dollars a consultation than donate a few bucks to the Foundation. If people had put their hands in their pockets and donated we’d be a lot closer to cure/treatment, instead it will take years at this rate. Guys always moan about how their Dr’s don’t believe they have PFS but then when you have Dr’s willing to help and they just ignore this. I’ve no problems donating $150 to this project.
i already started donating 150usd, i will have to do in 2-3 times unfortunately
thanks for this. I think this will be great for us but they must take into consideration the results of the new studies coming out, before deciding on the drugs to experiment.
it’s great that some team is interested in our problem
What do you think about this:
“The 5α-RIs also induce a global defect in C19 and C21 5α-metabolism”
It seems that they are anticipating the results or other study, but which one?
Also this phrase:
“Our recently completed (and as yet unpublished) work has confirmed that P5ARIS is a genuine problem and is not a figment of the imagination”
I did not know this clinic was performing a study …
.
This sounds really promising, and I’m sure the Foundation are putting them in touch with the researchers of the other studies. I think we have to work to fund this.
Yes, we need to get behind this. It’s not a whole lot of money if we figure out who can donate what.
I’ve spoken with Dr. a few times and during our last discussion, he mentioned that he had just submitted an additional study. When speaking with a few members of the PFS Foundation, they confirmed this study. They’re hoping that this study will be published within the next 6 months, and they were unable to give me any further details.
I don’t understand why there is such a lack of information behind these studies–even in regards to the Baylor/Harvard/Milan ones which have been going on for awhile. It’s like, “oh, it’s coming out X Month X Year.” Then that time rolls around and they’re like, “it’s postponed” or “study has been pushed back.”
Is it just me or does it seem like there’s very little interaction between the Foundation and those with PFS?
That is just how research works.
donated
Maybe we need a bit more explanation about it but on the face of it this seems huge. This is the first time we’ve seen clinicians and medical researchers with an awareness of what has happened to us talking with some confidence about of the possibility of a medical cure.
I don’t really understand why anyone’s first reaction would be scepticism but there you go. I’ve been around long enough to remember when a couple of bullshit sentences from Crisler, Jacobs or some similar no mark would lead to threads full of excitement.
Those guys who used to boast about how many tens of thousands they would be willing to drop on studies better be opening their wallets.
I wonder could the PFS foundation get a counter going on the their website so we can see how much more money they need to fund this study?
At the moment we don’t know if they need another 7k or another 70k to reach their goal.
I think people would donate more money if they could see how far their money was going.
The counter is a good idea i think
I agree. People will get motivated to donate if they know how much is being donated and when they see the counter going up after their donation! The foundation is the best thing the PFS community has going for itself.
Ya… I’m one of those who never donated. I have a little concern that somebody could be taking advantage on our situation…