To Tumbleweeds, Bizzbee333, and others...

Science PFS Research
#1

Please check your eligibility for the studies. I’m pretty much begging you at this point.

My vision is so fucked up from this it makes me dizzy and nauseous at times. I have suicidal thoughts daily.

Whether you think that’s weak or ridiculous is irrelevant at this point. The truth is that these studies are extremely important.

I know some of you think it won’t lead to a cure any time soon…and you may be correct.

But what about future generations? Are we to sit on our hands and let the same fate befall them?

The quicker we get this figured out, then the sooner a treatment protocol or a cure will come, whether it be this generation or two down the line.

There’s already been multiple people that say they can help with expenses, and apparently the PFS foundation can help as well.

Please, just find out if you are eligible and go from there.

We need to do this; if not for us, for the people that come after us.

Thanks,

Matt

#2

Agree, We are already a small minority. If we squander this opportunity we may never get another one. The blood of future PFSers will be on our hands.

#3

Brother, I’m in Canada. I’m broke. Participating in the Harvard research would cost 5 thousand dollars, easy, for three separate return flights, three separate hotel accommodations, car rental and food. I support any research initiative but simply don’t have the money. If the PFS Foundation wants to pay my way down there, assuming I get the time off work, that’s great. I’ll do it. However, I’m sure there are thousands of Americans already living down there who can participate for much cheaper.

#4

Contact Phillip Roberts (media@pfsfoundation.org)…this has been posted a lot before - BUT THEY CAN HELP PAY. If you really have PFS, then “don’t have the money” is not an excuse. This is what the Foundation is for…

#5

I was concerned about the 3 visits as well. When I spoke to them about it they said it can be consolidated into consecutive days. The Harvard study pays you $800. It was the Baylor study that costs $4,500. There was no mention of additional costs on the Harvard study. At least not when I was talking to them about it.

#6

Yes…you actually get PAID to participate in the Harvard study. Tumbleweeds - please stop spreading incorrect information. Or if you aren’t sure, just ask!! :slight_smile:

#7

This is the perfect quote the sums up the pervasive attitude around here…someone ELSE will do it. Typical.

#8

You guys are something else. I can’t tell if you’re being intentionally obtuse or just dumb. Yes, Harvard pays 800 bucks to subsidize travel expenses. I can’t pay 5 grand out of pocket because I don’t have it. And unlike you yanks, I live in Canada where travel costs are much higher. Why don’t you recruit guys from the American east cost? I’m sure there’s hundreds on this site? Anyway, I’ll look into it.

Jorbie - just got off the phone with Lyons law firm handling the class action against Merck in Canada. They expect a case resolution within 4 to 6 years. This is a long process. We’re talking a decade. At least.

#9

There is no amount of money that can make up for what we lost.