I am 38 years old and suffering from PFS.
I have ED and do not respond to Viagra/Cialis/Levitra etc.
I am willing to put up $1mn USD to anyone in or out of the medical profession for any treatment that could cure mine and others’ condition.
Please forward to all Drs etc.
If you are really serious, you should know there is no currently cure and spending bllions to docs probably will waste your money. Best you should contact with pfs foundation which ours best hope to develop some treatmants or cure. If you can donate this ammount we really appreciated.
Hi
I am very serious and indeed i do support the foundation and have flown for the research!
The principle behind my idea is different.
The research is great but is slow and may or may not find a cure…
If we put up an amount funded by our “Crowd” that is ONLY payable if someone can solve PFS then we effectively could create a HUGE incentive for someone to do this!
To date there are a handful of projects that are underway and at this pace we may never see a cure. Also , the average doctor that is not being funded would rather remove a prostate or a kidney stone as this will pay his bills.
We need to pool all our desperation into a fund that is HUGE and that is only payable if the problem is solved.
I am going to create the mechanism to do this and hopefully all the desperate men out there (like me) will be willing to put an amount to anyone who can solve this - imagine we get 10mn USD or 100mn USD.
I dont know where you are in your process but i will do anything to sort this out - even a life of poverty!
I agree there is a place for research and for doing things the conventional way and this must continue.
At this stage the research is in early stages that i estimate they are at least 5 years maybe 10 from finding any type of treatment.
Darryn,
If you contact the PFS Foundation they can advise you on the best course of action, and £1m would go a huge way to helping research. The search for a cure cannot be viewed in isolation from the studies into exactly what PFS is and how we have been affected. (See Awor’s recent posts under about this: viewtopic.php?f=33&t=9059.) Once we have more information on PFS, we can stop flailing around in the dark in our search for a cure (which hasn’t worked for over 10 years) and can start an informed search for a cure which works for everyone with PFS - not just one person.
Of course, I do realise you are helping the studies and that is great. And its fantastic that you have funds you are willing to use to solve this awful condition. But I think the money could be better used, so would urge you to contact the Foundation with your ideas. At least that way you will get informed information before you decide on whether and indeed how to proceed.
Thanks,
Davey
If I had your amount of money I would buy me a penile implant …
I have the same issue but unfortunatelly not millions of money …
A penile implant comes with its own complications…
I am going to solve this issue!
darryn,
Thanks for participating in the current round of research projects. I highly encourage you to contact the foundation with regard to your offer and see if there are any unfunded projects that could be of a more immediate benefit. I applaud your enthusiasm but we will get much further by pooling all our resources toward the current track of research initiatives.
I’d also like to say thanks to you for participating in the studies.
I think it would be best to talk about this kind of money in private, directly with the PFS Foundation. I bet the PFS Foundation could easily make the money work very smartly.
I would suggest to launch a parallel project like pfsfoundation. Two are better than one. Maybe second project looks to fix this via stem cell therapy.
you can also spend some money to find if Fin has caused any genetic changes in our bodies. There are some posts which say Accutane causes genetic mutations, maybe fin has done the same thing.
Another option maybe to find if Fin is still present in our skin or other areas. Xhorndog has tried to invite attention in this direction. He referred a case too where a drug was present in body tissues years after being stopped.
I think your money would be better spent on the PFS foundation too, but if you really want to go the “crowd” direction, you can do it in more structured ways. Innocentive (innocentive.com/) hosts competitions that have high participation rates and a good track record of actually solving hard problems.
If you were serious, find a way to make a media splash. Think of it as an investment in advertising, and get it covered by the news. Throw out a private, million dollar award for a cure or new information on what finasteride does to our hormone system. You’d have to out yourself, however, which could be problematic depending on what it is that you do, etc.
I love the idea. But it would have to involve a lot of work and media savvy.
Advertise on Neurology/Sexual Medicine journals. That is the right place to go if you want to capture the attention of people that count (in my opinion).
Personally I would avoid advertising on un-targeted audience. That would be loss of time and money. Not many persons in this world are capable of investigating our problem. Many less could achieve the task you propose.
Exactly - which is one of the main reasons why the PFS Foundation was set up - to co-ordinate joint-working between the necessary expert doctors/researchers. In order to focus in, laser beam-like, on the problem. Since the job of setting up a body to co-ordinate experts has already been done, there is no point duplicating this work. The best investment anyone can make is in the PFS Foundation.
If the PFS Foundation can make it’s way then it’s not a bad idea to have an extra fund as a reward. Many people move only when they smell money. And this could catalyze the attention of other research groups. As a matter of fact, this is not a simple illness to resolve and in science, not only research counts: personal ideas, intelligence, preceding experiences, action line and many other things count too. Having more teams investigating this illness, and boosting their personal interest with money isn’t that bad of an option in my opinion. This could really make the difference, depending on the amount of money that is offered.
Any news?
Contact the PFS Foundation. Tell them you have a lot of money, and you want to preform studies, but you are not interested in publishing peer reviewed papers, you are interested in DATA and RESULTS the second they are available. Tell them you and all of us want to work TOGETHER to interpret the data. Then we will not be sitting on our hands like little children waiting for our research scientist parents to get their paper published, we will immediately have access to information that we can goto work on.
In other words: the best way for more money to speed things along is to change the motivation of the research scientists from publishing papers to monetary gain.
Alternatively, people are apparently not participating in these studies, which is ludicrous. You could pay people to get their asses to Boston and get poked and prodded.
Another pretentious person.