Hi all,
Given the latest events and the more increasing number of members (or sufferes) who are using this website, and trying to make a difference, i find it, ultimately intolerable that we still have NO IDEA whatsover where or how the donation money given to the foundation is being spent.
Can anyone from you tell how much money was spent on Baylor or harvard study?..Who made the decision that this kind of research or that kind of facility is supposed to make this or that research?..Who is responsible, and why cant they log in to this website and post, and disucss with usâŚHo much money was donated last year, and how was it spentâŚI have already in the past 12 months donated more than 500 dollars, and i would have donated 3 times more if i had the answers to these questionsâŚ
Im not trying to accuse anyone of anything, and i appreciate every single effort put to the cause, but WE DESERVE to knowâŚEveryone is trying to use our condition (Trust me its human nature to want to get rich or famous on the account of othrers) and we should just not allow itâŚ
I DEMAND IMMEDIATE AND FULL TRANSPERNCY FROM THE THE FOUNDATIONâŚ
All who supports that, please take the time to at least post MeToooooo under this postâŚ
Thanks
Theyâll just close these types of threadsâŚJust like the Baylor threads and the last one i posted about khera emailing meâŚinstead of discussing they close them then it just festers up even worse and people keep opening more and more threads about the same topicâŚ
Well the second this post is closed, i would leave this forums for everâŚThis is not north koreaâŚMedia freedom is the least what we can do, to combat this disease, and if we dont have it, MERCK has already won.
Khera actually emailed me three weeks ago the entire Baylor study is completed and has been excepted for publicationâŚHe said he expected it to be published within 2 weeksâŚThat was 3 weeks agoâŚ
Well it is publishedâŚI doubt they did anything more than this questionnaire and the penile sonographyâŚ
Where are the ppl responsible in the PFS FoundationâŚShouldnt they demand more information on the study of the genetics and epigenetics?..Someone must be responsibleâŚAnd we deserve answers, if someone is collecting money on behalf of our conditionâŚ
Again im not trying to accuse anyoone and saying he mus be held responsible and pay for anything, but at least he should provide us with answers instead of leaving us speculating on every little thing regarding this studyâŚPart 1 part 2 , it coming in 2 or 3 or 40 months, it has been accpeted no not yetâŚWTFâŚWe are talking about tens of thousands of dollars that were handed over to Khera to do research, and all we are getting is BS answers.
Enough is enough
How many of you can name me 3 ppl responsbile in the PFS foundation? I keep hearing the name philip but he WAS NEVER HEREâŚHe never posted anything, or spoke to usâŚWTFâŚIs he just an imaginary guy?? Where IS HE?Does he have PFS himself?..II can never imagine anyone fighting for our cause better than a fellow suffererâŚWhy should i accept someone who doenst even have the courtesy to register at this website and talk with us?..Why should anyone of us donate? WHY?..We need answers, and we need them now
Philip is just a media contact at the foundation in New JerseyâŚu can talk to him anytime u like just call the foundation numberâŚI have spoken to him a couple of timesâŚHe told many about the study being in 2 parts last year, including myselfâŚLast 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 wonât say shitâŚ
It has completed and once it has znd been excepted for publication which khera himself confirmed to me it hadâŚAnyone should be free now to discuss the study findings open and freely because its overâŚI have heard through the grapevine they found a whole host of genes that deregulated in pfsâŚ
Who knowsâŚu are not likely to get any answers here and is why I went straight to khera.
A media guy that doesnt evem log in to these forums and say anythingâŚREALLY?..
I really know shoes comapnies that send their âmedia guyâ to shoe forums to try to answer questions about the quality of leathers or what problems this or that shoe hasâŚ
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?
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.
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 Itâs a topic to see how many of you really agree with me and to raise awarenessâŚ
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
âAlready accepted for publication. I expect the EPUB version to be out in the next couple weeksâ.
and yet you titled your thread âBaylor study to release within 2 weeksâ. âExpect in the next couple of weeksâ is quite different to âto release within 2 weeksâ. 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 doctorâs assistant wouldnât give somebody she doesnât know her colleagueâs email address. Then another saying they deserve to be pestered. Weâre just not going to host that sort of discussion on this forum, for obvious reasons Iâm sure you can appreciate.
To be clear, calling the study âThe Baylor Studyâ is a misnomer. The one which was published in the last few days isnât a singular thing called the Baylor study. It obviously didnât contain any of the gene expression investigation which presumably will come in a subsequent publication. I doubt itâs 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 âtheyâ doing anything to him. Thatâs a conclusion youâve jumped to. Itâs probable he canât give you more information because he doesnât 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 doesnât participate in the forum here, I honestly donât 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. Thereâs no grand conspiracy from the staff here to shut down Baylor threads for no reason. Unfortunately, they often devolve into stuff that isnât going to be hosted here and are a headache to moderate (which diverts resources away from other projects). When thereâs something tangible to discuss, of course thereâs a thread to discuss it in (like the recent publication Baylor study, part 1 - 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. Weâre 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).
I no longer wish to be here or pass a long any info I haveâŚI must turn down your offer to write a story which I was consideringâŚI 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 knowâŚ
Thank uâŚ
Trust me i cant stress enough on how much i do respect the moderators here, and how much i really appreciate all of youâŚBut 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 worseâŚ
I wont be donating a cent anymore to a foundation that doesnt even share such information with the main body of sufferersâŚAt the end propeciahelp is the main forum and the most important one.
Itâs not a matter of they can or would. THEY MUST share these information with you, as you represent all of usâŚ
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. Itâs as easy as thatâŚ
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 goingâŚItâs not a rocket science.
No heâs not, this is the exact quote from his email from another thread "âAlready accepted for publication. I expect the EPUB version to be out in the next couple weeksâ. It says nothing about the genetic study and Kheraâs 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?
Youâve shown you have very little info except some conspiracy theories which have already been proven wrong.
None of us are hiding anything, and as the mods weâre sharing what we know with you guys.
Guys,
What he is trying to say is. The foundation should provide a reason for people to donate. You have personally donated 0âš because they havent explained what they will do with the money.
Would you ever donate to a charity that just says âwelfareâ 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 donât 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?
Thx for putting it in simple wordsâŚBut reallyâŚWhat 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 spentâŚWhy arenât we seeing such stuff from the foundationâŚ
99% of us wont even consider giving money to a homeless man who is apparently sick and cant work, under the assumptionâŚHe should be working and he would spend the money on alcoholâŚ
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
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 donât 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.
@Sibelio ,
Baylor is completely outside of the control of every single moderator. Itâs outside every single PFS Foundation board memberâs control, too. Surely you see it is up to the researchers to publish and announce everything? Iâm just as frustrated as you, and I wish it couldâve been completely published with both parts. And I wish it couldâve been published a long time ago. But none of that is under my control or any other moderators.
I see what you did there.
PropeciaHelp moderators and Post Finasteride Syndrome Foundation board members are two different entities. So while I understand your frustration, this post isnât going to do anything. Contact Phil or anyone else on the contacts page with your complaints as already stated.
What you guys donât 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 donât.