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“Our recently completed (and as yet unpublished) work has confirmed that P5ARIS is a genuine problem and is not a figment of the imagination”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 …
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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…
The Foundation is funding vital studies and is funding is our one great hope for getting out of this mess. I would urge everyone to donate what they can.
Then you’re part of the problem.
If anyone has any doubts that the foundation actually wants to help us out, just pull up tax records. It’s all public information.
You are concerned about being taken advantage of but what about those supplements companies who charge to much for their products? The pharmaceutical industry in the US makes billions every year from sick people and is up there with weapons manufacturers for profit margins. What about the fast food restaurants that charge $2 for a coke that costs 10 cents to make. How about all those Dr’s that have taken $$$$ from PFS patients for a condition they cannot cure, are they not taking advantage? If you live in a world of corporations then you’re already being taken advantage of. Dr John Santmann, the CEO of the Foundation lost his son to PFS, he is a man who has channeled his grief into helping us, that’s a very powerful motivation right there, you can’t buy something like that.
In the UK it’s been exposed that CEO’s of major charities are paying themselves 6 figure salaries, driving £100k company cars and getting huge pension entitlements, now that’s being taken advantage of. I don’t see Dr Santmann using our money to fund a lavish lifestyle, it’s being spent on research with very good intentions. The leading researchers in the Italian study have CV’s and credentials as long as your arm, they hardly need the PFS work to pay their bills, Dr’s like that are in high demand. Harvard University is conducting another study, again they hardly need the PFS work to fund their departments, Harvard is a global brand for educational excellence.
People don’t like donating because they don’t get something physical in return for their money, donation is a belief system.
I’d have full confidence to donate to the Foundation if I was in a better position financially. It’s one of the best things we have going for us, and too many take it for granted.