Ignorance perhaps, but no disrespect to awor or the Foundation ever. Like most of us I get by each day on hope. The foundation and awor/mew are the only thing keeping this going. When I don’t hear anything from anyone(not that its awor/mew/foundations job to report to us every week) I get concerned-seems like a normal human reaction.
Last year I thought that if I could just make it to february I might have some hope but then february came and went and nothing really happened.
I know the guys who are researching PFS are doing their best but many of us find that every day is a struggle and we cant stay in this state indefinitely.
Guys, cool down a little please. No need to speculate. There are three realities here that everyone needs to understand:
- Generally speaking, science moves slow. In our case, add funding challenges and difficulty to get approval for invasive, human studies. In our case, also add the delay in getting NPO status which didn’t make the funding side of things any easier. Also, the whole process of designing a well thought out study is complex and time consuming. This is not tick-the-form labwork but rather hard core basic science.
- As a policy, we do not discuss research projects in public until they are ready for recruiting. I hope the reasons for this are sufficiently obvious to everyone.
- Nobody from the Forum or Foundation is working on PFS related matters full time. Nobody is paying us for our time, expenses and we are all volunteers, often dealing with our own set of problems. Accordingly, we do what we can and communicate when time permits and when so inclined.
This is not a PFS solution super market and our problem is not a simple one. I can assure you that research efforts are on track (except for timing) and the things which I promised in the past will start materializing in the forseeable future. I will not put anymore timeframes on whatever is going to happen because the process is too unpredictable and raises expectations.
Until then, please hang in there. Also, now that the Foundation has NPO status, please support it financially to the extent that you can afford.
Thanks.
Thanks Awor,
The fact that the Foundation is carrying out research has to be incredibly promising - compared to just a few years ago, when no one was fighting our corner. Of course, it is not an ideal situation, and it is not easy living with this when we want all the answers overnight. However, while the need for a degree of secrecy is frustrating, I can understand that it is very necessary. Let’s all continue to support the Foundation and hopefully in the future PFJ will just be a bad memory for us.
Not sure if its the foundation. But all of us should be praying on our knees to Dr. Melcangi and Traish
I, as well, am very appreciative of your efforts. This isn’t going to be easy but it’s going to happen. The truth always rears its head. The major challenge regarding funding is that general public is very apathetic. If people don’t make personal connections they generally will care much less. Everyone has been touched by cancer, for example, in some form so it’s not hard to raise funds for it. PFS is something that won’t touch nearly as many, and even when someone has PFS their friends/family members likely won’t know that they do. My mom and dad know and not many others. Personally, I’m trying to establish a normal life while living with this. I don’t want the label.
If a major celebrity/person with A LOT of money ever got PFS and pumped a lot funding in we could see massive change. I wouldn’t actually be surprised if this happened. It may be a matter of time. We may never know who they are, but it just takes one or two individuals to get behind the cause. Regardless, as I said, the truth will come out.
Keep on working. We’re moving in the right direction.
Thanks for the reply awor and for all you do. I will be contributing.
I wonder could the Foundation tell us off the record if their is any treatment they believe may help PSF ?
I know they cant say much without evidence but they must have some idea on how to treat PSF.
It’s been a number of months and we have heard very little. I am surprised that the completed studies are not even published yet such as the one involving penile biopsies.
Has anyone heard anything?
i am sure things are progressing nicely … hang tight man, things must be happening
I have a few question in regards to the current studies going on. When will we be able to apply for NIH funding, if are issues are on the same pathways of cancer one would think that we would be eligible, also it looks more and more like we are in the same boat as the SSRI syndrome individual wouldn’t it make since to try to get them to donate to the PFS foundation as well put us all in one category?
As far as raising money how much more do we need to get these studies of the ground? I just don’t know how much more of this roller coaster life I can take, are we looking at years or are we going to know soon?
Probably worth asking these questoins direct to the PFS Foundation, as they are organising all the studies. Would be great for an update from them (although I understand the need for a certain level of secrecy, and that research into a complex problem likes this takes some time).
I don’t understand the secrecy at all. I think it would be very useful to know how the money we are donating is being spent. Are we paying for pure research, or for PFS foundation members to fly to exotic locations to listen to presentations that they could have reviewed online? Hopefully there is a review process as to how the money is spent. I would hope that MEW and Awor would be part of that process.
the foundation is clean and they are run by clean people … any thought to the contrary is total bullshit … we should all be down on our hands and knees thanking these people, because like it or not, they are BY FAR our best bet to ever having our lives back, and they sure as hell are not “flying to exotic locations” as you suggest, and they deserve a lot more respect and appreciation than that
Lennon, I couldn’t agree with you more with out the foundation we would be dead in the water, god forbid we start another parasite theory… People like the above, are why we don’t get any updates form Awor or from anyone who actually has a clue of what is going on anymore.
Why would you bust your butt to try to contribute to finding a resolution to this condition only to come here and be criticized and harassed. I personally am grateful for the research team and the forum members who contribute to their findings. I truly can’t wait for the theory section to be closed and pray to god that it is soon…
If I am not mistaken, a not for profit organization is supose to make public its research initiatives and funding. I could be wrong however.
Garbage like badluck’s post should be deleted immediately. Better moderation would serve this forum well, to make the signal to noise ratio more favorable, and so people won’t blurt out whatever dumb thought comes to their minds (parasites, fungus, indignation towards the foundation)
Don’t you think this is overreacting a bit? The guy just said he doesn’t understand the need for secrecy and you all are treating his comment like it is blasphemy against a supreme being. I look forward to the day when we know so much that we can close the theories section too, but jumping all over people isn’t gonna make that day come faster. All we can do right now is just wait and hope, so stop fighting about it.
Yeah I would have to agree with the above comment. While some people here have been on the forum through the whole process of creating a non-profit, others have not. The hope that comes from research initiatives is incredibly welcome to everyone here, but that doesn’t mean that everyone should just blindly give money to an organization they know nothing about except for that some people on the Internet say that it is legitimate. Instead of yelling at the people who possibly aren’t as in the know about the PFS foundation, maybe those who are could help point people in the right direction to get the information they need to feel comfortable giving money. After all, if you really do believe in the foundation’s work, the most important thing is to get as many people to donate as possible.
horse shit … i stand by every word i said … wise up people