I demand immediate transparency from the PFS-Foundation

Philip is just a media contact at the foundation in New Jersey…u can talk to him anytime u like just call the foundation number…I have spoken to him a couple of times…He told many about the study being in 2 parts last year, including myself…Last time was nothing but a waste of time talking to him. They must have jumped his ass over revealing info about the study because he has clammed up now and won’t say shit…

It has completed and once it has znd been excepted for publication which khera himself confirmed to me it had…Anyone should be free now to discuss the study findings open and freely because its over…I have heard through the grapevine they found a whole host of genes that deregulated in pfs…

Who knows…u are not likely to get any answers here and is why I went straight to khera.

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A media guy that doesnt evem log in to these forums and say anything…REALLY?..
I really know shoes comapnies that send their “media guy” to shoe forums to try to answer questions about the quality of leathers or what problems this or that shoe has…
So if philip is the Media guy, who is his superior?
WHO?Why cant i get answers?And why is the secrecy?Are they being targeted by Merck?What kind of joke is this please?

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It was published 15 or 16 days after you emailed him. WTF

The obvious thing to do her is ask the Foundation for this information and tell them you donated $500 and would donate more but would like more information first.

Why the hell are you posting this here? Go to the contact website on the foundation and send them an email or give them a call.

https://www.pfsfoundation.org/contact/

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First of all he is obviously talking about the genetic study, and the Report that Khera published is not what he was referring to.
Second how do you know that i havent done this already?..
Third It’s a topic to see how many of you really agree with me and to raise awareness…

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Nobody here knows the answers to these questions and they can only be answered by the foundation. You could try to email their contact address with your questions.

Firstly, the title of your thread was a misrepresentation of what was imparted to you. Khera emailed you

“Already accepted for publication. I expect the EPUB version to be out in the next couple weeks”.

and yet you titled your thread “Baylor study to release within 2 weeks”. “Expect in the next couple of weeks” is quite different to “to release within 2 weeks”. This has the potential to create confusion (people generally only see the title of the thread in the catalogue after reading the OP the first time) and of course on the 14th day with no EPUB, some immediately cried foul play was afoot.

Your thread was open for over two weeks. It was new news and therefore fine to be on the forum. The problems started when some were discussing Merck paying everybody off because a doctor’s assistant wouldn’t give somebody she doesn’t know her colleague’s email address. Then another saying they deserve to be pestered. We’re just not going to host that sort of discussion on this forum, for obvious reasons I’m sure you can appreciate.

To be clear, calling the study “The Baylor Study” is a misnomer. The one which was published in the last few days isn’t a singular thing called the Baylor study. It obviously didn’t contain any of the gene expression investigation which presumably will come in a subsequent publication. I doubt it’s uncommon for multiple publications to be published from one patient cohort.

Honestly, this is the sort of talk which becomes problematic. You have no evidence for “they” doing anything to him. That’s a conclusion you’ve jumped to. It’s probable he can’t give you more information because he doesn’t have any. I expect the foundation are as eager as we all are to see the full results on this specific investigation.

He handles the media side of things for the foundation, not propeciahelp. Again, you can email him directly, he may have a reason he doesn’t participate in the forum here, I honestly don’t know.


@silentpain89 @holyhead Please take it in good faith that you are valued members of our community. We are all afflicted by this disease, coping as best we can. There’s no grand conspiracy from the staff here to shut down Baylor threads for no reason. Unfortunately, they often devolve into stuff that isn’t going to be hosted here and are a headache to moderate (which diverts resources away from other projects). When there’s something tangible to discuss, of course there’s a thread to discuss it in (like the recent publication Penile vascular abnormalities in young men with persistent side effects after finasteride use for the treatment of androgenic alopecia. 2020).

Also, nobody on the staff here are sitting on their hands, accepting the status quo. We’re also lamenting the lack of publication of the gene expression analysis. In the mean time, we work day in, day out on trying to further this issue (please see here for a recent update on some of that work Propeciahelp: An update on site efforts).

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I no longer wish to be here or pass a long any info I have…I must turn down your offer to write a story which I was considering…I cannot keep up with all the smoke and mirrors here myself any longer and I have tried to be as honest as possible about what I know…

Thank u…

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Trust me i cant stress enough on how much i do respect the moderators here, and how much i really appreciate all of you…But the Foundation is becoming really sketchy to me, and the fact that you as moderators dont have any information about the things i have asked makes it to me all of a sudden so much worse…
I wont be donating a cent anymore to a foundation that doesnt even share such information with the main body of sufferers…At the end propeciahelp is the main forum and the most important one.
It’s not a matter of they can or would. THEY MUST share these information with you, as you represent all of us…
On the other hand i do expect some form of Interest in knowing these things from the propeciahelp moderator, as promoting to donate to the PFS foundation is allowed and rather encouraged.
If promoting to donate to anyone is encouraged and allowed then you should be sure where our is being spent. It’s as easy as that…
I dont believe in conspiracy theories trust me, but im not a stupid guy, and everyone can see that there is something MAJORLY wrong with how the Baylor study was going…It’s not a rocket science.

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No he’s not, this is the exact quote from his email from another thread "“Already accepted for publication. I expect the EPUB version to be out in the next couple weeks”. It says nothing about the genetic study and Khera’s email was completely accurate as it came out when he said it was going to.

If you had emailed the Foundation already, you would have said so. Did you?

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You’ve shown you have very little info except some conspiracy theories which have already been proven wrong.

That’s right.
The foundation is not a private company and they use public money for good.

If people from the fund have invested your money in research and this research is not available and nothing is known about it, then they have to explain the whole situation publicly.

What are the reasons why they can’t give answers.
I personally donated $0.00 and I probably have no right to demand anything.

But those of you who consider yourself insufficiently informed - should go directly to the foundation and express your thoughts.

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None of us are hiding anything, and as the mods we’re sharing what we know with you guys.

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Guys,
What he is trying to say is. The foundation should provide a reason for people to donate. You have personally donated 0₹ because they havent explained what they will do with the money.

Would you ever donate to a charity that just says ‘welfare’ and never describes their plan?

As for why they dont communicate, why not? Propeciahelp is the biggest forum for their concerned patient group. If they don’t communicate here, who are they even talking to?

Leave that, who is in the PFS foundation? Its more of an illumaniti thing at this point.

Trust me, I would love for them to be doing something beneficial. Why would anybody in our position even wish otherwise?

But these are facts and simple logic that are straight visible.
Please consider this scenario, you consult a doctor and you tell this doctor about the PFS foundation and he asks you this simple question
" Who are they, what have they done, and what are they doing?"

What do we say?

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Thx for putting it in simple words…But really…What do we say?..
I have always donated money in the past before getting PFS (Not trying to sound as an angel but just saying). Every single donation group was doing some sort of transparency report, where they tell how much money they earned and on what it was spent…Why aren’t we seeing such stuff from the foundation…
99% of us wont even consider giving money to a homeless man who is apparently sick and cant work, under the assumption…He should be working and he would spend the money on alcohol…
And yet we are supposed to give money to someone that cant even tell me how much or on what the money was spent , and i cant even see, or hear anything from. WTH

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I wholeheartedly agree with @silentpain89.

There is a lot to say about Baylor, the PFS Foundation, the utter impotence of our community here on PropeciaHelp. I have spoken a lot about all of these in the past - in many deleted threads as well.

I don’t intend to waste any more time and effort to write posts that may disappear into nothingness. At the end of the day facts speak stronger than words. I hope the reality of Baylor and everything that went along with it is now becoming clear to everybody.

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@Sibelio ,

Baylor is completely outside of the control of every single moderator. It’s outside every single PFS Foundation board member’s control, too. Surely you see it is up to the researchers to publish and announce everything? I’m just as frustrated as you, and I wish it could’ve been completely published with both parts. And I wish it could’ve been published a long time ago. But none of that is under my control or any other moderators.

I see what you did there.

@silentpain89 ,

PropeciaHelp moderators and Post Finasteride Syndrome Foundation board members are two different entities. So while I understand your frustration, this post isn’t going to do anything. Contact Phil or anyone else on the contacts page with your complaints as already stated.

What you guys don’t notice is the immense work done behind the pages. @axolotl put out a HUGE research article he wrote himself. This website was an absolute mess until it started getting cleaned up two years ago. We have data that will be used in future papers and shared with researchers thanks to the survey.

Posts like this are divisive. They also show that there is some sort of belief that the moderators have this magic pile of knowledge or insight. We don’t.

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I think people want to know the future. What the foundation plans, what ideas it has, and so on.

They’re a pretty closed organization.

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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.

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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There is a small remark, there are people who donate a lot of money to the foundation.

Maybe they are not participants in the forum, but for them the picture is the same as for all of you.

People are not happy that they donated their money and time (and we don’t know how much money was donated).

And when the X hour comes - nobody knows anything about the main study. As you understand this is very critical information for people who suffer from pfs.

These are normal questions for the foundation, perhaps for a private company - no.

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