I demand immediate transparency from the PFS-Foundation

General Discussion
#23

The truth is that Propecia Help members donate very little money to the foundation. They pretend like they are big contributors, but even $1,000 is not even a drop in the bucket.

Just like anything in life, if you want to participate and get involved, then you have to be willing to contribute something, whether its your time or a donation.

The Foundation is continuously working on things that they hope will benefit the PFS community, but they don’t owe anything to individual members who have contributed nothing. These conspiracy theories that are created are completely baseless and absurd. Merck has not corrupted anybody in the foundation or any of its researchers. Like in any organization, sensitive information is generally given to people who need to know that information to contribute. Sensitive information is not given to people who don’t need to know, but because that exposes the organization to risk of some kind of harm.

This is just a basic lesson in how things work in the real world. This isn’t directed at you Airlife at all. You make a very good point point of the benefits of the Foundation clearly articulating their goals, plans, and ideas. If somebody wanted to see this come to fruition, they could pitch it to the and if they think its a good suggestion which benefits the Foundation, they will be more likely to do it. I personally think this is a good idea, but you have to show them why it is in their interest to do it. If they don’t want to do it for some reason, maybe because it is time consuming or expensive to do it, you can negotiate with them. But then you need to offer something in exchange to make it worth their while to do something they don’t want to do.

#24

I’m curious as to why this is the case.

Who has the most interest in the plight of the foundation? Surely suffers themselves, especially articulate, well-reasoned and scientifically literate sufferers who have shown extraordinary vision, commitment and hard work in the face of the adversity of PFS?

Would it not be reasonable that the moderators be on the board?
Surely they are the best informed in terms of what is the best course of action to go forward from a patient standpoint and having at least one or two as board members would be an obvious decision.

Didn’t AWOR design much of the Baylor Study specifics? Why is he not on the board?

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#27

For people who donated significant money and time, they have a right to be upset. I can promise you that the ones who are making so much noise and conspiracy theorizing are not those people. There maybe a couple who mentioned that they actually participated in the Baylor study. I believe they even said somewhere the Foundation covered the costs of the study for them. The attitudes of the members on this board are very out of line. With these attitudes, they are guaranteed to keep themselves miserable for a long time and make others in the community miserable too.

#28

Maybe the foundation could send out more detailed information to registered supporters.

To become a registered supporter of the foundation you should have to donate a minimum of 100 dollars a year to the foundation.

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#30

Concentrating all the research efforts in only one Foundation seems risky.
We should all deploy efforts in our own countries to engage scientists and other foundations to conduct research on PFS, at different levels.
And then we can share info through this type of forums.

It may take 1 or 5 or 10 more years, but we will find the causes of our problems and the solutions.
And we will bring to justice the people that created this scheme, as well as their accomplices (doctors that denied the existence of PFS, doctors that delayed the publication of vital research for years, journalists that didn’t publish the truth, and even fake participants in online forums, whose mission is to disinform).

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#32

It seems the main goal should be to aim to be as anti-fragile and independent, for lack of a better term, of any one foundation or web site. We should try to become more open and connect on social media and on other web sites. I think it’s clear there will be growing awareness of this problem, even if the Baylor study was a fraud or was subverted. It’s safe to assume nothing will come of it. We have to do everything we can to make awareness of this grow fast enough, both in terms of collecting evidence and in terms of presenting it PR-wise.

I’m unfortunately not in the best position at the moment due to COVID-19 and unemployment (haven’t received any government help yet, in my case) but I fully intend to donate a lot and do more the moment I’m out of this situation.

#33

I’m not setting any rules here. I’m explaining principles of how people and organizations work in the real world. The Foundation is not a charity, but even if it were, the beneficiaries would still not entitled to demand anything.

It’s as simple as this:

  1. If you want to get involved and have a significant influence over the affairs of any organization, you are going to have to offer time, skills, or other resources.

  2. If you you don’t want to get directly involved, present your idea or request in a way that makes them want to do it. It’s only going to work if you clearly demonstrate how benefits the person or organization to whom you are appealing.

  3. If you have given nothing, don’t expect to get anything in return. Same goes for what you ask of the Admins of this forum. These people have taken initiative to pursue their own projects within the community for their own personal reasons. They don’t owe you anything either but you can try to appeal to them in the same way as in #2.

  4. For your case, if you wish to have more clarification about the Foundation’s goals and current projects, you have to make your case to them as to why they should do this. I personally think it is a totally reasonable request, at least mostly. If I were in your shoes, I would write them and say a lot of guys on the forum are reluctant to donate because they don’t know what is going on and how their money will be used. You could say if you guys clarified these things, you could possibly raise more money. If they care about raising money right now, that approach is a million times more likely to be effective than simply demanding things from them without having provided anything. If this is important to you, I encourage you to make your case.

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#34

Assuming that only members who paid a lot of money are allowed to know or demand transparency from the foundation is one of the weakest arguments i have ever heard in while…You have to understand that sometimes 50 dollars is a large amount of money for someone who cant work because of PFS, or someone who lives in third world countries…For them the 50 dollars is something, for you and me apparently not…But saying they are not allowed to demand anything (Which no one is doing, we only want Transperancy) is just plain WRONG.
Would you give me now and for no reason 10 dollars? Just for the sake of it?..Would you give your vote to some president who cant even tell you what his Programm is, just becuz its one vote, and there other millions…
Even if you donate 1 dollar i appreciate it, and you should know that it was put into good use.
And once again if the foundation can publish a transpercany report i will be donating a lot more than now

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#35

It’s not an argument, it’s a explanation of how negotiating leverage works. You can demand whatever you want, but you should have no expectation you will get what you want unless you’ve contributed in some way. Otherwise, they have nothing to lose if they don’t comply with your wishes.

This is the only point you said that makes sense. You don’t have to donate if you don’t want to, it is completely voluntary. Your only leverage to influence them to do something that is against their interest is to threaten to withhold donation. If you are donating $500 and you threaten to withdraw that, they don’t care. It doesn’t matter whether $500 is nothing for you, or a huge amount. Otherwise they have no reason to do what you want, just because you want it.

You claim to be a smart doctor. Here is a riddle for you. If you want an organization to do something, and you have absolutely zero legal recourse to do it, how are you going to get them to do what you want and achieve your personal objectives? This riddle has nothing to do with the Foundation but it could just as well.

So why don’t you let them know that you will be willing to donate if they provide a transparency report. Then you will see how much they value the amount you are offering to donate. Maybe they will think its a good idea and do it to raise more money. Maybe it is more of a nuisance to them than it would be worth. Keep in mind how annoying this community has been while the Khera study has been pending. They might prefer to do what they are doing and make it public when it is completed. That way if it takes them longer than expected, they can deal with it themselves, and not deal with Propecia Help members. It boils down to how much you’re willing to give and how much they need your money. It’s just how things work in this world.

#37

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#38

My comments really weren’t directed at you. You expressed a desire to achieve a worthwhile goal and I wanted to discuss good and bad ways to go about trying to achieve that goals.

Not a big deal, but you said you were quoting me and then it wasn’t a direct quote and actually changed the meaning of what I said.

It has occurred to me that thousands of PFS patients could be donating small amounts each that adds up to a lot of money. That’s not the case unfortunately. There are maybe only a few dozen guys on here that have said they donated and its usually in the $100 range. You raise a fair point, but that’s not how it is.

If an organization were in the situation where they raised a small amount of money from tons of individual contributors, they would be in a different situation. Just as an example, Bernie Sanders campaign was based on just that, small donations from a ton of people. He had a message and vision that millions stood behind and he said he was in a position where he didn’t have to listen to any one of his donors.

Maybe the foundation could stand to benefit from such a fundraising strategy, convincing each PFS patient to donate $50 annually. Maybe it doesn’t matter to them. I’ve said this multiple times, but if you think this is a good idea you have to present it to them in a way that will persuade them to do it. Right now it seems the foundation is operating pretty autonomously but lots of guys here think they any kind of authority, which is naive at best. If the foundation wanted to pursue this fundraising strategy, they would put a lot more energy into doing things differently.

I’m not promoting anything here so if you think I am doing a bad job of promoting, I agree with you. Most of the guys on this forum are in a tough position and don’t know how to advocate for their own needs. It is not uncommon for somebody to ask why Merck doesn’t just research a cure for us or why can’t somebody make them do it. That’s obviously 100% unrealistic but its kind of similar to make these kind of demands of the foundation as well. The main difference is the people at the foundation really do care about the well-being of the PFS community. Merck is pretty much indifferent to us or annoyed that we can cause some headaches for them.

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#39

As an analogy for what many people are doing here, we could all be political refugees who are receiving support from a charity that is designed to protect and help refugees. If I save up as much as I can and donate $100 to this organization, I’m in no position to start telling them to what to do. Maybe I disagree a few things they’re doing or they even are doing a poor job at some things. I am much more indebted to them than vice versa and I am in no position to start demanding things from them, even if they have every intention to help us.

#40

That analogy really doesn’t stand up, contributions from refugees to such an organisation would be a tiny proportion of their funding, with the organisation answerable to larger donors, plus the organisation would be run by non-refugees. As I understand it the PFS foundation was set up by sufferers and has no government or other assistance. We fund it with our contributions and therefore it should be answerable to us.

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#41

I’m not sure where you get that understanding from. Nobody on this forum has said they’ve donated more than $1,000 to my knowledge. It was set up by John Santmann, who lost his son to PFS. He’s no specifically a sufferer, at least directly anymore.

Like I have said many times, those who funded a substantial amount are free to make suggestions and get involved. But none of the people here complaining have donated a material amount.

#42

I feel the frustration of the OP and others, there does seem to be a culture of “all PFS sufferers are equal but some PFS sufferers are more equal than others”.

It feels like a small elite are privy to information that the rest of us are not, and the moment we question these things threads are locked instead of anything approaching answers being offered. This should be a forum of free expression, but we are kept in our box, or thrown out if we get too difficult. Despite the fact we are suffering an illness that causes major mood issues, despite the fact this illness has driven some people to suicide, and despite this forum being the only place for us to really turn to, especially given the aggressive campaign that was waged against the other PFS forum prior to it closing down. I personally don’t think anyone should ever be excluded if they are demonstrably suffering this illness, or that any threads should be locked.

The end result of this is often that we end up fighting among ourselves, and it sickens me to think that there are people who know some of the answers or information relevant to questions we are asking and arguing over, watching us fight among ourselves and shutting us down or simply not engaging.

It is staggering to think the PFS Foundation has a PR or Comms person who is not an active presence on this forum, but I think that is the ultimate demonstration of this disconnect between them and the people on this forum who are funding them.

The last thing I will say is, please, all of you who are stuck in the farmyard, let’s stop fighting among ourselves and getting on each other’s backs. We are all suffering, we are all frustrated and many of us are desperate. I see too much aggression between folks, too much judgement. We must stick together and if we disagree, express those disagreements in a cordial way. Because you never know how a shitty message aimed at another user might affect them, no matter how confident or arrogant they may seem on the forum, they could be really struggling.

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#43

I am aware of him setting it up, that doesn’t stand your analogy up any better.

#44

Well if you’re understanding is correct, anybody who has donated a significant amount is free to express their concerns, requests, desires with the foundation. Otherwise, they are in the exact same position as the refugees in my example. Any member who is complaining on this forum is certain to not have donated a significant amount. If they have, they would go directly to the foundation and discuss what they want with them.

My point here is the guys who are constantly complaining are wasting their time. If they want to do something about their situation, they should take initiative instead of whining and demanding other people do things for them.

#45

This is such a pointless discussion. If it makes you feel better I will agree that it is a great analogy and hopefully we can get back on track.

Though hang on. What initiative exactly would you suggest a desperate PFS sufferer takes on their own? The Foundation is supposed to be that initiative, because on our own we can achieve very little. Yet many don’t feel they have a good grasp of what is going on there, how decisions are made. We feel excluded to some degree, and I don’t think it is too much to ask for them to be in greater contact with us, rather than individual members have to contact them to find out what is going on. That makes no sense.

I am not going to engage in this any further because you are not really coherent in what you are saying.

#46

You don’t have to agree with the analogy. I don’t need it to be a great analogy, but it fits the bill. I am telling you, the analogy literally applies to 100% of these guys who are complaining. They are like spoiled children who feel entitled to get things they don’t deserve. The reason I am strongly communicating this point is because their whining is pointless and hurts morale of people on this forum, including those who are actually doing things.

#47

Please stop now. This is the only place many people have to turn to. If anyone out there needs to whine, or complain, or get something off their chest. This is the place to do it. Don’t listen to anyone who tells you otherwise, because bottling it up is the worst thing you can do.