This is probably your misconception. The Foundation is a separate organization from the forum with some overlapping activities but mostly functions separately.
A PFS sufferer should undertake whatever initiative he wants to see completed. If you can’t do it alone, you will have to work with other members to figure something out. But people who are not involved in the hard work that others are putting in to further our cause should absolutely not complain.
Sage Therapeutics was working on a drug that was potentially going to be helpful to us but failed. The vast majority of members on this forum were equally involved with Sage clinical trials as they were with the Foundation. Go complain to Jeff Jonas about why he failed us by poorly designing his clinical trial and not ensuring people in the test group actually took the medication.
I have read a lot of crap on this forum, but a user telling others they should keep quiet if they have a complaint is probably the worst. This is the ONLY place to turn to for most of us, a great deal of us are struggling with depression, many battle suicidal ideation, and you want everyone to stay positive the whole time. You are really doing the community a disservice with that attitude, and I will not engage in this side discussion any further.
I don’t think you have to keep a positive attitude all the time. This situation is very tough. But you have a more legitimate claim to demand Merck do something to fix our situation and that will never happen.
It’s not complaining in and of itself that is so bad but its the entitlement to think they can make demands of other people that owe nothing to them. People who are working hard to help them out with nothing in return. I totally understand being disappointed, but blaming people who are working hard to serve your needs for nothing in return is absurd and spoiled.
Well let’s just agree to disagree. For me it seems entirely reasonable to expect a foundation set up to deal with PFS and deriving a significant portion of its funding from sufferers to be in direct contact with the main community of sufferers. If you don’t think so, that is up to you. But if people complaining is something that bothers you, I would suggest you simply don’t get involved in those threads. You are effectively telling people to keep their frustrations to themselves, which I think is very dangerous in the context of the illness we are suffering. Everyone needs an outlet, and for many of us this is the only one available.
You have a lot of misconceptions about what is going on here. Absolutely, anybody who donated a significant amount is entitled to express their concerns and should go directly to the foundation to do so. None of the guys complaining on here have contributed anything significant. I have a problem with the group who gives nothing and expects everything in return.
By the way, when you say “it seems entirely reasonable to expect a foundation set up to deal with PFS and deriving a significant portion of its funding from sufferers to be in direct contact with the main community of sufferers.” I completely agree. That is not what is happening though.
The creator of this thread has given $500, a pretty insignificant amount, and is demanding “immediate transparency” from the foundation. He should go directly to the foundation and express his concerns which he is entitled to $500 worth. Posting this here is not going to accomplish anything and just upsets other people. That in and of itself is very toxic in my opinion.
Most forms are complaining are totally fine but blaming and criticizing others when you are not in any position to do so is not acceptable in the slightest bit.
@Frustrated, the Foundation was established to help PFS sufferers and prevent more victims from coming to pass. That is their reason for being.
Not for fun, not as a whimsical activity to help while away the time, not as an investment instrument, nor as a secretive cabal.
It’s mission statement is, and I quote: “The Post-Finasteride Syndrome Foundation’s primary mission is to fund research on the characterization, underlying biologic mechanisms and treatments of post-finasteride syndrome (PFS). Other goals include generating public awareness of PFS and providing support for patients suffering from the condition.”
It exists to help sufferers. That’s its only purpose.
We are the specific beneficiaries of the Foundation.
It has been established to help us.
I think that’s hard to dispute.
Now that we’re agree with that axiom, the question comes down to what should a foundation do with that express purpose?
That is an entirely valid thing to discuss. While in a cold and mechanistic sense, those who donate more deserve more respect and attention holds true in all aspects of life, that does not change the fact that the Foundation exists with the sole purpose of helping all sufferers, not only the wealthy or generous.
Thus it is entirely reasonable for us to expect them to act in a way which is entirely in keeping with their stated purpose.
If we accept this, the next question is what exactly should an organisation of such a nature do in order to maximise benefits to it’s beneficiaries?
For one, giving them a voice is of indisputable importance.
As is providing transparency as to their activities. Transparency is a low-cost endeavour with low risk and a large benefit to PFS sufferers. It gives them vision and hope for the future.
Naturally giving beneficiaries a voice and transparency go hand-in-hand.
I think it is entirely reasonable to expect the Foundation to make both of these things accessible to all PFS sufferers, not just a select few.
Of course, there are unstable and irrational people in our community; those who agitate, those who conjure up conspiracy theories, and those who are truly nihilistic, and giving them a voice poses a large set of issues. I understand that, but I feel it’s the Foundation’s obligation to do so regardless.
The least the Foundation can do is provide an element of transparency as to their investment activities, and any future research initiatives. And that information should be available to all sufferers, not just those at the top of the pyramid.
You are certainly free to discuss and make suggestions, but if you want to have any real say you have to get involved in a significant way. The guys who are criticizing and blaming others are not getting involved.
It isn’t a low-cost endeavor. There are tons of reasons to not publicize research in advance. One of the most relevant to this forum is that it can sometimes take many years to complete research projects and people on this forum keep complaining and pestering those involved.
This is not their obligation and its not how non-profit organizations work. Some people founded an organization pursue their own goals. They chose to use the organization to help PFS patients. If they wanted to, they could use the non-profit to start an operation that distribute flyers on the street that warns people of finasteride’s dangers. That’s their prerogative. That’s obviously not what they’re going to do though. But they’re definitely not obligated to do anything that members on the PH forum want them to do. Still they very well may do it if you pose your suggestion in a way that is well-received.
The board of directors literally directs the operations of the foundation to best pursue its goals as it sees fit. A non-profit needs funding to operate and to secure funding they need find mind donors who believe in their mission and approve of their ability to execute. If they can’t maintain confidence of donors, their funding will dry up. That’s how it works in non-profits. They are more inclined to cater to the needs and wishes of a single person who makes a large contribution because they’re more essential to the non-profit. But if the foundation would rather try to raise small donations from many individuals, they will take a different approach. While none of those small donors really have any direct say, the non-profit needs to appeal to a very broad base to keep the funding alive. If you are a small donor and don’t like how things are going, feel free to keep your $100 to yourself. If the foundation starts to run out of funds, it may try to adjust its strategy to win back people like you.If you don’t like how things are going, you can keep your $100 to yourself. With a large base of donors that make small donations, individuals have little to no influence. Individuals can make suggestions, but if the board doesn’t think it furthers their mission then they won’t do it, especially if it requires a lot of energy or there are downsides to doing so.
No kidding. Its up to the Foundation if they think its worth it to deal with giving out this information to the public and it is a much more significant cost than you are acknowledging. People on this forum who are completely uninvolved have emailed researchers which is highly inappropriate, disruptive, and reflects poorly on this community.
If you think it is a very important and worthy pursuit for the Foundation provide updates to members of Propecia Help, I am offering you a clear way to try to advocate for yourself and your objectives.
You can reach out to them and say hey, a lot of guys are really depressed and despondent on the forum. I think it would be a great thing (and really important in progressing the foundation’s mission) if they were able to provide some updates to the Propecia Help community. Many of them are suicidal and this would give them some reason to live if they know there are some things that are going on. This could save lives even. Saving lives is something the foundation is very interested in doing as they put a tremendous amount of effort into taking the calls of very desperate community members and setting them up with other people who can potentially help them in some way. This could be some part of your pitch or you could pursue your own approach. You could work on this as a group and submit a collective request. Keep in mind, entertaining this request is much more of a pain in the ass than you realize so you must present a very strong case. This one is most definitely your best shot at achieving your goals, at least in part.
Secondly, if any of you have the resources, you can go to them and say I think it would be very important to provide more transparency to the forum to give them some kind of hope. I am willing to donate a certain amount of money so that you are able to provide updates to the Propecia Help forum and deal with the inevitable and significant energy that will result from informing the Propecia Help community. Keep in mind, they may actually think this actually hurts their mission or sets it back. Publicly announcing your projects before they are done creates significant inflexibility. If you want to change a project in the middle or if one is delayed like Baylor, both are frequent issues that come up, it can create huge headaches for you.
I’m frustrated with all the relentless members on this forum who don’t seem to understand how things work in the world and think the Foundation should do whatever they want, simply because they have PFS. None of these complainers have shown awareness of how to get things done. Complaining draws attention to their issue in hopes that somebody else will solve their problem for them. I am not going to solve this for you because it doesn’t matter to me. I am here explaining these things to you because I want to alleviate your obvious suffering by giving you a means to try and do it yourself or at least explain why things are being done the way they are.
To be clear, I am not defending or supporting any members request for transparency or any other demand. I am not defending the Foundation’s decisions or approach. I am explaining to you why that gap exists and how to try to change that for yourself if you want to see change. This will allow you to take matters into your own hands in a way that is more effective than pestering.
I beg you all, if you do want to pursue one of these routes, don’t do it in an way that will further harm the credibility and reputation of this community. You will not want a million members trying to do this in an uncoordinated approach.
When I say you have to take initiative if you want to see something done, this is one way you can take initiative. Keep in mind you will probably have one chance to state your case so make sure you have everything lined up very carefully.
But if you want to continue complaining and blaming others and not taking action, it will be 100% your fault alone that you did nothing to get the change you wanted.
I don’t really have anything more to add to the conversation at this point. I don’t think I can explain it in any other way but this is one way to be an activist.
Did you at all read what this man wrote? He is not saying you should publicize research in advance or whatever you are claiming…He wants a transperency report on the funds that goes into the foundation…EVERY non profit organization provides this kind of information…Its called transparency…And sorry to disappoint you, BUT EVERY RESPECTED RESEARCH FACILITY announces its projects, and ongoing studies…That how they recruit controls and sick ppl at the first place…There is a whole Website dedicated for that…Clinicaltrials.org…This isn’t the military and manhattan project my man…This is medicine…And if they dont have any new projects…Then its fine…Just come and say it…Stop playing the role of the lawyer and stop telling us to ask and pay and etc…
Its a non profit organization that is collecting money NOT ONLY FROM SUFFERES but from all ppl, to HELP HELP HELP US, not make money, or be famous or whatever…Its like opening a facility to help drug addicts or help refugees in third world countries and tells them that only the ones who pay are the ones who gets treated or get proper food, and the rest must enjoy rotten food , becuz they dont contribute, while in the mean time you keep collecting money from the public on their behalves…
You are suggesting that the foundation is more interested in single donators that will then decide everything, and influence al decisions inside the foundation, then THIS IS PLAIN WROOOOOONG…Becuz guess who can donate this amount of money ans silence every effort to do something for our community…PHARMACEUTICAL COMPANIES…I want to know, if any big payments was given to the foundation from such donors, becuz that will explain many things…Only Transparency Reports will show such things…
Answer me this question, and stop circling around it? How much money did the foundation get last year?If you dont have the answer, or you are not interested in finding out at least, my discussion with you is over.
You apparently don’t know the answer to this question. Whether or not I know the answer doesn’t matter because I am not interested in discussing it with you. I suggest you do some research on non-profits to understand how they work.
In this last post, you make baseless speculations about the kind of fundraising they are looking to do and then suggest pharma companies may have donated to the foundation. As far as conspiracy theories go, that one is probably the least logical that I have seen here. The dots don’t even connect while the other conspiracies theories were wrong but at least they made sense.
With your attitude, what you are looking to do is almost as unreasonable as demanding Merck to find a cure for PFS. I don’t really have anything else I’d like to discuss with you. Good luck trying to accomplish whatever you are looking to do.
If you think these were mere conspiracy theories, go and take a look on how the FDA approved such medications and SSRIs in particular…Take a look at the Opiod crisis caused by oxycodon…You talk to me about how the world is governed by money, yet all of sudden it is mother Mary working in the foundation…You are the one talking about the foundation looking for big a** donors who are supposed to give big amounts of money and with that money they should decide and influence the foundation…I for myself am not aware of any other big a** donors that will all of sudden have interest in helping our rare condition and pays thousands or better hundred of thousands of dollars and influence the foundation into the right direction…Baseless speculations would be if you provide me now with transperancy reports of the funds, and yet i keep on posting these speculations, but taking money from the public, and showing us nothing in return, then i have no more comment… These are not speculations…You and I and all of us here are victims of the same people who were supposed to protect us in the first place…If you cant see that by now, then i cant help you my friend…You have no idea how corrupt the medical Field is…Trust me on this…I know.
I’m not really interested in engaging you further. Nothing you said in that post is accurate. The PFS Foundation is not taking money from big pharma to suppress PFS research or any reason for that matter. Your reasoning is that because there is corruption in the pharmaceutical industry, that is proof that they have bribed the Foundation. It doesn’t make sense at all.
Your comments show that you have no idea what you’re talking about but you freely share your ignorant and inaccurate beliefs.
Don’t get upset with me, I’m not advocating how things should or shouldn’t be. I’m simply explaining to you how the world works. Doctors often don’t understand these things and you are case in point. If they don’t like your idea, good luck trying to get your way with your $500 donation. I’m pretty confused as to how or why you think that should work.
