Who's donating to the PFS foundation?

General Discussion Media & Awareness
#1

I’ve seen a figure of $2 million being the sum required for research.

That might sound a lot but it’s equivalent to one thousand men donating $2000 each, which should be easily achievable. That works out at $100 per month for twenty months, it’s not a great sum of money at all considering what has happened to your life.

I appreciate a lot of us have taken a financial beating with all the symptoms of the illness affecting employability levels for many, but we can all do something. If you still managed to hold down a middle income or higher job you should even be donating more. What else are you going to spend it on? Expensive dates to get laid? Raising a family?

I just get the feeling there’s about 100 men maximum donating to this and everyone else is too resigned, lazy, arrogant or stupid to cooperate. If you’re one of those people who’d rather spend ten grand getting your ass flushed out by five different doctors, are in complete denial about the severity of the problem and refuse to donate because you think you can fix it yourself - frankly I hope you never get help if a protocol does emerge from the studies.

You can still try and get better through testing supplements and regimens, I don’t see why that excludes donating at the same time though.

That said, the radio silence from the administrators here and the foundation itself about what has been raised and what is needed maybe isn’t helping matters either.

#2

Info about the financial status of the foundation would be useful. If they required a certain amount to fund further research or even just maintain running costs, I’m sure many of us would be happy to chip in.

1 Like
#3

The PFSF set a goal of $25,000 in donations for 2016, of which approximately half that has been met. The majority of funding comes in the form of larger donations from a small number of doners, including family members of people affected by PFS.

I haven’t seen any numbers like $2,000,000 being thrown about, but it would be nice to know if there is in fact pertinent research that relies on raising this much.

#4

maybe if people could see a bit progress it would spur them on to donate,ye know like the studies what have been going on for a few year now,maybe if they could see some results they would want to donate,it seemed like everyone was donating at first but as a few year have passed and still nothing from the studies I think people have lost interest a bit,and now they want more money???,for what another promise of some results in 2020 lol,sorry if I seem a bit downbeat about it all,i know we are very lucky there is a foundation and that there are studies underway,its just 9 years of pfs can get ye down a bit…

#5

It’s also worth pointing out that for the American members, any studies which confirm how the drug changed us could be used to sue the arse off Merck, and would effectively be helping you get a financial windfall in a lawsuit rather than nothing at all, so it’s a win-win all round.

For the rest of us, we’re only donating so that it might help us get better. We won’t see the money again.

#6

Why is this the case Luckfax

#7

It seems to be pretty much impossible to sue pharma companies in many or most European countries. Those that have been successful get derisory payouts.

#8

I wrote few weeks back that I am feeling better but it is not the case any more. I have crashed couple of times since then. I move from point A to B and then again from B to A. pfs is very hard if not impossible to get rid of.