I wish the doctors who are investigating PFS would recommend a possible treatment they must have some idea on how to treat this problem.
While everything that has happened over the last 18 months is very exciting and more than I could have imagined I think we need to keep in mind we are still at the very beginning stages of research. Even more reason to keep the momentum moving by doing whatever we can to further awareness and support the research. In that respect what progress we make will hinge on how much we can pull together.
This is my concern, where are we going from here? What’s going on with the research initiatives? When are they scheduled to take place? How’s the funding going? I know we need to be patient but I feel in the dark and need some glimmer of hope to keep me motivated and sane.
I really want to be proactive but don’t feel there is anything I can do to really spur things on. Since yesterday I’ve approached a journalist with our story and also emailed the UK law firm that Darkman mentioned in the post that was recently bumped by Mew. Although this isn’t much it’s something.
If anyone has any answers to my questions regarding the research initiatives please post. I am also interested in trying to gather the more proactive members of this forum into a group that communicates regularly and motivates/supports one another to get more media and medical awareness about PFS. If you wish to join me please get in contact. Many of us could do more to strengthen our cause but it’s hard from behind a computer screen. We must get our voices heard and we can if we pool together.
This.
even if we are not happy with the rate of updates etc., it does not mean we can stray from the foundation. We still need to support them in every way possible, at all times, no matter what our complaints may be.
Great. Another Damsel-in-Distress. Instead of complaining that a hero hasn’t saved you yet, how about you get off your ass and do something. Instead of asking “what is taking so long?” how about asking, “What can I do to help?” I never understood the passive attitude of some people here. I feel like I’m on the Gardasil Girls forum.
Well I think some of the passiveness can be blamed on propecia. Definitely has quelled me down considerably.
They’ve been updating this fairly regularly keeping in mind research moves in terms of months and years. If there hasnt been an update I’d just assume everything is still on track and there just isn’t anything to report.
I have commented multiple times across the forum for people to not wait for the foundation to cure them as it is unlikely the foundation will cure them any time soon, if ever. I have no illusions about the foundation curing any of us, but the thought is nice, I was feeling positive about the foundation for once, and I was curious about where it’s progress currently stands. That is a far cry from being a “damsel in distress,” waiting for a hero to cure me.
But thanks for being a cunt.
You are in absolutely no position to comment on the research. You have no idea what the scientists have found, what treatment options they’re considering, or what it took to get to this far. Talking shit theories all day is one thing, but providing misinformation about the capabilities of the foundation is another. If you’re another member who can’t/won’t contribute, you should leave. While you’re worried about making sure everyone has the right to their opinion, others are working to expand the research and awareness even further.
Gentlemen. Please the enemy is PFS. Merck. And ignorance. Everyone should be trying to help solve this… and right now the foundation and generating mass awareness is our best weapon.
anyone who makes negative statements about the foundation has lost their grip on reality, plain and simple. it is by far the best thing we have going. if you cannot get behind it, and cannot add anything productive whatsoever, then remain silent. personally, i am sick of it. we have enough stress in our lives without having to put up with this nonsense.
COMMON SENSE!!!
Not sure what the eye roll is for, that’s pretty much the case far as I can tell. It is frustrating to hear the constant trolling of the foundation’s efforts on the board, seeing guys get more excited about this or that quack theory of the week, etc. There are people working on these research initiatives at great personal expense in terms of both time and money. I think you are missing how huge it is that the research is finally getting underway and in the hands of the only people who can ever give us answers we need if we ever hope to get out of this mess.
Anyway, I’m sure Awor will give us a brief overview of his thoughts on the conference soon as he has the opportunity and will have more to add.
The only reason I mentioned my general lack of faith in the foundation was to refute SA’s comments that I am somehow sitting around, waiting for the foundation to cure me. In my previous post, I even mentioned that I was actually feeling positive about the foundation for once, which is why I quoted someone’s simple request for a status update on the foundation’s progress. That’s when SA jumped up my ass, unprovoked.
here is the thing… you earlier referred to the foundation as “that pfs foundation business”, or whatever way you worded, and it comes off as you making it sound like the foundation is a gimmick, or silly … that is not an acceptable attitude, and it shows that you are not grateful, or at least not nearly grateful enough.
this is like beating a dead horse. seriously. it boggles my mind.
there is no unity on this board. everyone has a worthless opinion here it seems. it almost feels like we need to draw a line down the middle, and those who want to give their all to the foundation should just band together and ignore all of the other nonsense being spewed back and forth.
it is funny, i always considered myself to be a nice perosn, but i feel like my frustrations are turning me into a mean person, and i absolutely hate it. i wish there was some way to just focus on the important things, like the foundation, and someone i could jsut block out all of the nonsense, but sadly it is everywher eon this forum.
something has got to give here. i am not a mean person, but i am at my wits end.
That was in another thread and not really related to this, but if that wording offended you, I apologize. You’ve been very kind to me and I don’t want you to think I’m mocking something you really believe in. That’s not what I intend at all. I had no intention of bringing up my opinion of the foundation in this thread, either. I was originally just asking what the foundation’s progress was.
Nothing was unprovoked. You berate others working with the Foundation as “zealots” who are “fanatical” then sanctimoniously ask for a “simple request” from the Foundation. Not once did the Foundation say they are taking requests. Read Boston332’s post again, you are not understanding the work and sacrifice it took to get this far. I hope you change your attitude and ask how you can help the cause rather than asking for “simple requests.”
Cap, from the looks of it you’ve only been dealing with PFS for a relatively short time.
A lot of guys come here, myself included, and are initially in complete denial about how complex an issue this is.
I tried all the supplements and meds, spent hours and hours on google scholar, convinced I’d stumble across some miracle cure.
I read through all the “bro science” theories, which always play out the same way.
I almost never post here anymore. As far as i’m concerned the debate is over with. Scientific research is the only way we’re going to get out of this mess.
And so, seeing as donating to the PFS Foundation is the best way that i can help move it forward, then that’s all i need to know. So i work, save, and make my monthly donation.
Perhaps once you’ve been here for a couple of years you’ll see who are the people on this forum you should listen to and who are the crackpots, cause there’s quite a few of them around.
I really think we need a marker that indicates how much has been contributed to the Foundation thus far or at least something similar. This would be good for morale and if others could see how much progress is being made it may encourage them to donate. I’ve emailed the Foundation for more info but have yet to hear back.
Is there any reason why this is not being implemented? Is there something that I’m missing?
If anyone has had more success with contacting the Foundation perhaps they could inquire whether this is possible. Even just a rough idea of progress/funds raised would be appreciated.
On another note. The best chance we all have to be cured or at least to treat this condition is through the Foundation. It is also the only way for us to channel our resources, funds and to be taken seriously by the medical community. The sooner we all come together to realise this, the faster progress will be made. Remember that with official medical recognition of PFS and more media coverage more funds will follow. After an initial push momentum will carry the Foundation forward. This is a very important time if we want real progress.