Funding

General Discussion Media & Awareness
#1

Given at some stage it seems likely we will have to fund research or something, why don’t we get started with getting some money together now?

If we are told by scientists we need to pay $25 000 to fund important tests, it will be pretty hard to get that amount straight away. However, if two hundred guys from here had been paying just $5 a week for the last year, we would have had $52 000 already!

This is a no brainer. There are men on here bleating about how they’ve spent $30 000 plus in a few years on this so a small weekly amount isn’t going to hurt anyone.

We are not going to solve this by individually running off to see different specialists. Clearly tons of us have tried that now without reward in even managing symptoms properly. It is not like two years ago when it was still a novelty seeing someone who’d been to Crisler or Shippen. Now we have guys who’ve tried all sorts of experimental treatments and nothing has worked. We need help. And we will probably have to pool our resources together to get at least some of it.

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#2

I don’t think this is a bad idea providing we come up with a simplified/automated way to do it whereby it gets paid automatically from something like a PayPal account every month. No one would miss the money.

There’s just consideration over who’s sitting on the collected funds. It’d wind up being a lot of money that one person would be overseeing.

#3

First thing that needs to be done is to set up a not for profit before you start collecting money. Technically, any money raised without not for profit status could be taxable. It isn’t an automatic given you are granted that status. The gov’t likes its money. So, it might take a while and obviously we’d incur some legal fees unless someone took it on pro bono.

In the meantime I think we can all set aside as much as we can afford knowing that it is a certainty we will need to fund research in the future. I know I have done this and I assume others have as well.

I agree that this community needs to be focused on exposure, funding and research. But I’m going to continue with Shippen and Jacobs and hopefully our case studies help with future research. We still can learn via trial and error.

#4

We could put the money into a trust or escrow account and have it where a few people have to agree to have any money pulled from it for whatever reason

#5

Is this the case for everywhere or just the US though?

There must be some way we can set up some sort of site where we can donate and see how much is being raised. Obviously there would perhaps be issues with transparency and what the money would be spent on, but perhaps leave them for later and see if this route can be achieved first.

I don’t think many will be putting away money for research aside from what they already spend on this. I mean Im keeping some cash but I’m not actively saving. Whereas it’s easier making regular small or not so small payments and you will likely get a LOT of participants. If awor or anyone else involved with scientists suddenly asks for a big lump sum that might not be viable.

We have to utilise and mobilise our members in this manner or we are missing a big opportunity. We could raise quite a big sum together and the sooner we start the better. Leave the doubts about how to implement this until later for the moment.

Who else would be in favour, in principal?

#6

is there any point. if any tests or resuts were found the rest of us would neaver be told. take this molecular study. i have given up asking what the outcome was.

#7

It doesn’t necessarily have to be for the studies led by admin. It’s just that those are the only ones with any credibility and scientific backing so far.

Just collect a lump sum for 12-18 months somewhere, then see how much we have gathered. There could have been further studies and other developments in that time making other funding options available to us, in which case spend it on something else productive.

It doesn’t have to be some cloak and daggers operation, we can all decide what to do with it.

#8

How?

#9

Discussion and voting.

#10

Guys, we are working on setting something up to support such funding. Will advise once a process is in place, it may take some time.

I can’t reveal much else at the moment.

#11

Good stuff.

Looking forward to visiting the beach bar in the Bahamas mew sets up when he’s disappeared with all our cash!

#12

Riiiight… good one.

#13

LF: There are a lot of different opinions about which way to proceed with research. Somehow I don’t think it will be so easy…

Mew: Good to hear, I’m looking forward to it.

#14

I say we start putting money aside for it now, and add to that when it’s up and running.

You should easily be able to get fifty to a hundred guys right off the bat; then maybe double that and then some over three to six months as guys who don’t log on much look in, or new members arrive.

If we can’t unite behind such a simple task, we may as well shut down the forum.

100 guys paying $10 per week = $52 000 per year.

#15

Great idea. If it is ran strictly through this site then I would like to know for sure that there would be some type of “vote” on how the $$ is spent before I would donate though. Don’t really like the thought of “donate and let Mew decide where the $ goes”. No offense personally Mew :wink: