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Re: Crowdfunding for a cure?

PostPosted: Sat Jul 01, 2017 5:50 pm
by PoetFire
there is 'REACT' which is meant for research crowdfunding.
The idea of react is that it is a 'trusted' 3rd party platform to raise for rare disorders.
I believe they are genuine but nothing seems to happen, including no reply.
no project ever seems to have been fully funded.

personally i think the best crowdfunding option would be 'self-control' ... as ...
a platform like youcaring seems to take no 'cut'.
the admin can then have complete control where the money goes.

downside :
admin could run off with the money :D

Re: Crowdfunding for a cure?

PostPosted: Sat Jul 01, 2017 5:52 pm
by PoetFire
in truth over the decades there have been only maybe a handful of experts who have been interested in TMAU/FMO3.

over the last decade the only one I know of is Dr John Christodoulou.

Over the last decade he has got to the point of costing research twice (neither time fiunding funding stage).

His last costed research plan was around last Dec. I will need to look it out but from memory it would have been around US $80k (I will need to check. He uses AUD).

It had 2 research plans :
1. to try ataluren for FMO3 nonsense mutations. ataluren is meant to negate the false stop to some degree. Probably most of us are not nonsense muitations tho.

2. putting FMO3 thru a drug repurposing test.
This would be to try many 'OUT OF PATENT' drugs on FMO3/TMAU to see if any help. This would potentially help us all.

Re: Crowdfunding for a cure?

PostPosted: Sat Jul 01, 2017 6:20 pm
by sacrosanct
Hi Poetfire,

I just realised you are the same person I am speaking to on the other forum :-)

I have an idea, but I am busy at the moment (I am presenting one of my academic papers at an conference in Germany on Monday).

Do you know what happened to Dr Shepherd's research?

Re: Crowdfunding for a cure?

PostPosted: Sat Jul 01, 2017 9:05 pm
by PoetFire
best to cover all bases :D

I don't know about the DrShephard research tbh. They went public originally to crowdfund, but that didnt happen so went back to secrecy.
I suspect they still working on it.

Re: Crowdfunding for a cure?

PostPosted: Sun Jul 02, 2017 7:10 pm
by sacrosanct
It is a bit disconcerting that they were given a huge amount of cash and only managed to produce a single paper outlining the condition, with no mention of the therapeutic under test or how it performed.

Coming from an academic research background I can tell you that isn't usually the case, especially on government granted funding. The point of academic research is to publish your findings, good or bad, so that others can build on the work you produced, just like you built on the work of others. If there was a huge market for curing us, we would already be cured because people would have been clambering over each other to patent therapeutics and sell them to us. So why hide the results? The truth is they aren't going to make you rich . . .

Personally I think the best method thus far proposed is simply preventing trimethaylmine getting into your system in the first place. It isn't required. My views are that there are two ways to solve this.

1. We know Trimeylamine production is purely through microbial action. Therefore some method of preventing this from occurring is deduced, either by removing the bacteria or preventing Choline TMA lyase activity.

2. We allow Trimethylamine production and chemically alter it in the gut prior to absorption through the intestines.

The second option seems the least intrusive, most researched in other fields and viable. Yet it is also the option overlooked. There are hundreds of papers on chemically altering trimethylamine into non-odourous forms for other applications. Why can't these be tested for application in vivo?

Hell if I could get sheffield to test my urine for a reasonable price, I'd probably try them out on myself :)