Thanks awor,
I’m donating as soon as I press the Submit button for this post. Who is with me?
Would give a lot of people here hope of we got updates on the study stats a little more often. Especially the study on the penile tissue androgen receptors.
The foundation will have the best answer to that question but as Awor has said these initial projects are running well into at least the six figure range and we’ve had zero funds coming in from the forum. As you can see funding is now and will continue to be an issue. As much as can be afforded is needed. It’s a very good guess that the tax code next year will be much less favorable when it comes to charitable donations for large donors which makes the grass roots efforts here even more critical. As it goes with all medical research there will be a direct coorelation between what they can afford to do and how much progress is made. It’s an absolute fact that giving is an investment in your future and will expedite the answers we need to get out of this mess.
Thanks to the reasonable minded people who have posted here and have pm’ed promising to support the foundation. As is clearly obvious to us all and has been stated may times this is beyond any doctor in private practice whether they are balancing hormones, treating your prostate or performing any type of current so-called stem cell “treatments”. There is no “quick fix”. We can make progress but it’s going to take everyone understanding this and getting on the same path behind the foundation in terms of both participation in studies and financial contribution.
Any way to get media awareness pointed at Kenneth Frazier, Merck, or Dr. Roy Vagelos (guy who made finasteride) and forcing them into donating?
I agree. I will donate as soon as the studies that are already completed are made available. Additionally, I believe there should be some assurance that the investigators would provide updates at regularly scheduled intervals, and that all donators should have access to these updates.
Why not donate now? I presume that like virtually every guy on this forum you have spent at least a few hundred, if not substantially more, on docs, drugs, supplements and tests. That’s before we even mention the physical and mental toll of this ordeal. Why would you resist paying even a small amount to the only initiative designed specifically to help us?
If 200 guys even donated $50 per month we would have $120 000 at the end of one year to invest purely in our problem. Hopefully many will give more than this. Everyone should be able to donate the price of two coffees a week given what we have gone through. It’s not even like we are being asked to pay a lump sum up front like we have been by various parasitic doctors who have no clue what is going on.
Mew, any chance we as a group, propeciahelp can donate collectively with some sort of meter showing how much we raised? I think people would be more inclined to help donate if we had some tangible evidence of monetary progress
I’m going to try and give £100 a month from now on.
Is there anyway to get Merck to donate? At this point they can no longer deny the problem so wouldn’t it be in their interest to salvage at least some public image? A million dollars from Merck is nothing considering they made hundreds of millions a year from this drug.
Why would they do that? Donating would be tantamount to admitting guilt, and with as many lawsuits in the pipeline as there are, such an admission wouldn’t make any sense from their perspective. Merck never acknowledged guilt for Vioxx, a drug that killed thousands of people, so why would they do that now? As far as public image, what does that matter to them? The average person knows nothing about specific drug companies and thus has no opinion on them. Plus, whatever public image Merck had certainly didn’t seem profoundly affected by the Vioxx fallout – and, if we’re being honest with ourselves, the perception of our problems (which essentially would be considered quality of life issues) will never in a million years elicit the kind of response from the general public that the effects of Vioxx did (which were, you know, death).
Look, it’s be great if Merck would do the right thing, admit their guilt, and help with finding a cure. But I think it’s beyond a pipe dream to think that would ever happen.
you never know what would happen tomorrow or the next moment. Almost an year ago I was promising $2000 to donate but after being jobless for almost 11 months I can not make that promise yet I will do whatever is possible in my limited resources these days. Who knows maybe in future I make bigger donation.
Merck/Ken Frazier are not going to donate to PFS research. The reasons should be 100% obvious and we’ve been over them many times. Having to read people ask this makes me cringe.
To those demanding updates before they contribute: Awor is 100% correct those here making the most demands contribute the least. There was an update just a few weeks ago on the foundation’s website and Awor has been giving progress reports every three or four months not to mention the endless PM’s he answers. Still, go ahead and continue to waste your money at $10K a clip into nonsense therapies which don’t get us one second closer to any answers because you think something is being kept from you for no reason. Be made a fool of all over again. It’s time to face the reality that you have this condition and it’s not getting any better without a large synergenic effort by multiple research institutions which is going to alot of time and money.
Once NPO status is granted financial reporting is 100% transparent and public. There is no danger your money will be misdirected in any way.
lol me too
frazier and mercks “contribution” in funds will come when they lose the lawsuit… whoever is lucky enough to get something from it can donate if they choose to, and hopefully they will … too bad that will drag out for years most likely … we just have to give what we can for now, obviously there is no other realistic choice … just do what you can
We all had enough money to buy the dam drug that ruined our lives so we should definitely have enough money to donate to finding a cure!!!
Boston… I don’t know if your talking about me because I stated updates would give people hope. They would, and I hope your not assuming I didn’t donate anything because I donated the day the site became active. Tell ya what thou if I ever do “off” myself (because it is seeming more and more unlikely everyday we will never be cured and my life has been ruined) I have already told my next of kin to donate the $40, 000 in my online trading account to the pfsfoundation.
I second the above comments. I would suggest the following:
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We come up with a figure that would represent the 1st target to be reached to complete a certain amount of studies or research. Awor and his research group or the PFS Foundation should be able to come up with a rough and reasonable figure. A list of the studies that will be completed as a result of reaching the target amount would be helpful. Clarification should be given as to how these 2 groups are related. I’m assuming most people are aware of Awor’s efforts but are possibly lost in all the various and massively long threads. The PFS Foundation is new but people should have had the email that was sent round not long ago.
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An email can be sent round all registered users with the above information asking for a contribution for an equally divided amount between registered users. It’s the easiest and clearest way to get people to participate rather than having people having to find threads and keep up with dialogue between users. Asking everyone to contribute what they can and when they like will create a conflict and uncertainty for a lot of people, including myself. To put a figure on how much i could afford is difficult as is the thought of paying too generously or too stingy in relation to everyone else. If we can come up with specific and fair figures for everyone, i’m sure many more people would make sure they could afford it and contribute. So if the initial figure is $200K, we can ask everyone for $100 and see how we go from there.
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Short periodic updates, again by email from Awor’s team or the PFS Foundation should be given to show the financial progress we are making. We’ll have to accept a significant number won’t contribute, so another email can be sent round asking previous donors for another contribution to make up the shortfall, if the research is stalling. We have no choice in this. But if we do things stage by stage, in a controlled manner and aiming for targets, it should be a lot easier for people to digest and contribute. We should get a good idea, pretty quickly, of the scale of financial support we can rely on from the forum. Perhaps more will follow suit s time goes on and progress is being made.
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I can understand people may be apprehensive about who they are giving there money too and wondering if it will be used too good effect. It’s not like giving to Oxfam who have a reputation and we are primarily faceless strangers to one another. There’s not much we can do about that. But my take on it is, this is probably the best chance we’ve got and we have to recognize the efforts of people like Awor and the people at the PFS foundation. I think it is safe to assume, from all the information available on this board, everything is genuine, they will be doing the best they can and we just need to go with it and support their efforts.
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I’m assuming funding can only come from this community, but reading the board there seems to be uncertainty about outside funding sources. Clarification on this should be given in the email.
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Clarification in the email should also be given on the in’s out’s of donating especially for ‘foreign’ donors. I only understand donating in the UK. It is usually done in tandem with something called ‘Gift Aid’ which means your donation isn’t taxed and the amount you donate is actually worth more to the charity. I’m sure people would rather donate when there is less tax to be paid and this may be a reason people are holding back as well. It seems unclear as to the non-profit status of the PFS Foundation (the website states it is expecting it before the end of 2012). If it is not granted, so be it, there is probably not a better option than having monies collected all in one place in the USA. But details as to the tax implications on donations made within the USA and out-with it, as well as with and without non-profit status should be given for clarification. I would also give clarification as to the method of payment, namely paypal - the percentage that is taken off by paypal and is there alternatives?
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The 2nd, 3rd targets and so on, can follow in due course following the same procedures as above.
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A physical form of financial in-takings such as a meter posted somewhere visible and easily accessible on the propeciahelp.com or pfs foundation website would be useful but perhaps not essential especially if this is a lot of extra work to manage.
I hate to say it but one way to raise at least $100 donation would be to charge membership for this site. We all know how important this site is as would be the $100 donation
Fina, I completely understand the reasoning behind the idea but that idea would actively discourage membership and when we’re at a place where we desperately could use more voices, this measure would only hamper those already contributing to the effort (in any way they are) and silence those who have yet to speak out. Unfortunately not everyone can afford such a high price for a donation. I, myself, cannot comfortably part with much, as I barely have enough to make it through school and even though donations are incredibly important, they should be completely voluntary in nature. Again, I can fully appreciate the sentiment of the idea, but it would serve considerably more harm than good.
STILL no leadership on this issue…