When will the long awaited research start. All these amazing people who are suffering deserve some good treatment to recover
It’s already started and more is being planned.
1 Like
It has?
1 Like
I realise now that might have seemed misleading.
What I should have said is that as anyone who has read a reasonable amount here will know, there have been research projects in the past and that more projects will take place.
As an organisation, PFSN is trying to get Good quality research in place and discussions with scientists are ongoing.
As I’ve posted before, not all research is equal and we need research that will lead somewhere and serve us as well as the interests of a scientist. Part of the problem is being funded and part of it is visibility. With improvements in either of those areas, research is more likely to start sooner.
If you’re a millionaire, you can help.
If you’re not a millionaire but have social media accounts and or a webcam or mobile phone you can help.
2 Likes
And I’m sure if you’re not a millionaire you can still help finance research.
2 Likes
Well, kind of.
The community won’t be able to fund the kind of research that we need unless we have a few people who can offer hundred of thousands of £/€/$, which is why we need more visibility, so we can make a more compelling case to appeal for government funding.
The last community funded research cost (iirc) about 30k and as I understand it we probably need to be thinking about something that’ll cost a 7 figure sum as being the kind of research that’ll really make a difference.
I’ve said it before, but a few People dropping $/£/€10 a month isn’t going to do it, and I think it’s worth being realistic and honest about that.
The community will be able to fund smaller research projects but they’re going to be stepping stones.
1 Like
I believe the Baylor study was said to cost roughly 200k. It was a study with a great deal of depth and breadth, carefully designed and run by one of the best medical institutions in the world.
I’m surprised to hear that the studies being envisaged by the PFS network are thought to cost 7 figures, where a study at a fraction of the cost, like something of the nature of the Baylor study won’t suffice.
1 Like
Well, even at 200k I think it’s unlikely that the community will find that easy to achieve.
The suggestion of a seven figure sum came from Awor (iirc) and “seven figure sum” is what I remember, which is why I have deliberately not written 1000000.
It should be noted that what most people want is a way out, which even Baylor wasn’t going to deliver, even had it been a complete success. There’d still be work to be done to actually deliver a treatment.
I should also note that I wasn’t talking about Baylor when I said 30k.
1 Like
Sorry @orthogs I just want to clarify. Are you surprised that 7 figures for research is expensive, or inexpensive?
Not being sarcastic or anything I just couldn’t tell exactly what you meant by your last comment.
1 Like
Just want to clear up timelines on the research proposal that we, PFS Network, have mentioned in previous updates. While we’re hopeful we’ll have something to present in the initial timeframe we mentioned back in March/April (northern hemisphere summertime), there’s still work to be done, and as Greek has mentioned, we need to ensure whatever we present is good research and not just any research.
In terms of funding, we also mentioned in our original update that our team is personally committing a large sum to the project, which we hope will be under $100k EUD. We hope that by also working with the Foundation, and through several other avenues, we can meet our fundraising target. I do not believe we need millionaires in our midst to fund the initial research we’re talking about.
We will provide further updates as things progress.
3 Likes
Expensive when compared with past research.
1 Like
Any chance Merck would pay for it, if we can manage to work around a deal like … we won’t sue you once the damage is proved, but you help us one figuring out what the hell is wrong with us?
I mean, is there any chance we can get Merck itself involved into this, with whatever agreement?
5 Likes