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Crowdfunding for a cure?

PostPosted: Wed Dec 28, 2016 10:19 pm
by robert123
Hi all, this is just an idle thought that I ll throw out there. Just wondering could us sufferers get a crowdfunding campaign up and running that would actually raise enough money to have a real effect in terms of finding a (partial) cure for us.
I know this could be difficult as there probably aren't that many of us here and the nature of our condition makes fulltime employment a huge challenge for many.
It's just frustrating though that we have to live our lives with such a horrible disorder and there doesn't seem to be too much research going on. Personally I d love to see a study done on the nature of the microbes within malodour sufferers and even if something like a fecal transplant could fix the problem.
Something else which would be amazing to see is whether it would be possible to maanufacture a kind of synthetic fm03? Maybe that's not possible but perhaps that is sort of the holy grail for tmau sufferers.
Oh well, I guess these are just pipe dreams but I know what I m spending my money on if I ever win the lottery :)

Re: Crowdfunding for a cure?

PostPosted: Thu Dec 29, 2016 3:59 am
by PoetFire
Hi Robert.

It is a pity we aren't making use of the money among our community. I don't blame anyone (due to taboo etc).

I know there is a 'TMAU' research fund on the RE(ACT) rare disorder site, but it seems pretty dead.
The idea is that researchers put forward projects and then RE(ACT) give them the raised funds.
RE(ACT) is a (Swiss) charity (as far as I have checked. seems legit) but doesn't seem to haver the motivation.
It seems only one (or even none) projects have been funded.
They also take 10% which is a lot. I don't think they are profit making, but it's still quite a bit compared to say 'crowdrise'.
no hidden fees as far as I see.

Anyhow, I agree we should find ways to raise money among our community for research purposes.
I think we are probably the biggest 'rare disorder' (probably not even rare, but for now officially rare) when you add all the 'transients'. My guess. maybe 1% population.

Re: Crowdfunding for a cure?

PostPosted: Fri Dec 30, 2016 12:36 pm
by robert123
Hi Poetfire,
Thanks for your, as always, very informative post. I had a look at that re(act) site. It is extremely impressive, two of the commentators, silverstar and cureseeker (I wonder is one of them you!) on the tmau page have a very interesting take on the sort of research that needs to be done -
But as you said the site doesn't seem to be that good in the actual raising of money.
I think I remember reading Maria, the founder of the MEBO charity, saying that the tmau community's best hope is if advances in general medical research could throw up a cure, indirectly, for us. One thing I have noticed reading newspapers is that there is a lot more attention given recently to gut microbes and how important they are. That probably means there's a lot more research going into them which could be useful for us. Hopefully too with advances in gene therapy that could really help.
Still tmau is such an ignored and little known medical condition you can't help but think that there could be vast improvements in the understanding of it if ever there was only a relatively small amount of proper clinical research set up to investigate it.

Re: Crowdfunding for a cure?

PostPosted: Fri Dec 30, 2016 1:52 pm
by PoetFire
both of them are me :D
we needed 15 members to 'activate' the group fund.
not that it did much good.

re(act) and it's parent charity Blackswan seems a genuine, excellent idea.
There just seems to be nobody there (including staff).
and yet they have conferences. I can't think what they talk about.
A missed opportunity.

Re: Crowdfunding for a cure?

PostPosted: Tue Jan 03, 2017 9:56 pm
by robert123
Haha that's what got me confused; when I read the first comment I thought to myself hmmm that very much sounds like the well informed, technical reply Poetfire would make and then after the second comment I thought no wait that guy sounds even more like him.
You really do an awful lot for the tmau community Poetfire; thanks a million :).

Re: Crowdfunding for a cure?

PostPosted: Wed Jan 04, 2017 11:53 am
by PoetFire
some great dialogue in that thread :D

re(act) seems a wasted opportunity.

the founder is Dr Olivier Menzel ... er-menzel/

its part of Blackswan

it still seems to be going but there seems no staff or 'users' around for any of the disorders

bad points :
it takes a 10% fee.

good points :
we can see the total raised at all times.
idea is that researchers either put a proposal forward, or try for the 'tmau general fund'.

Re: Crowdfunding for a cure?

PostPosted: Wed Jan 04, 2017 12:48 pm
by PoetFire
actually, Silverstar isn't me.
i'm someone else there, but can't recall who.

Re: Crowdfunding for a cure?

PostPosted: Sat Jun 10, 2017 5:44 pm
by sacrosanct
Are there any serious suggestions with potential for curing TMAU?

The problem with crowdfunding is generally people want to see where there money is going, myself included.

If doctors/researchers put forward potential suggestions backed by scientific research, I wouldn't hesitate to part with my hard earned cash.

My understanding of where we currently stand is thus =>

1. DMB. This was recently patented, but I have heard nothing about actually getting this out the door. In fact that messages I have seen have been regarding the commercial unlikeliness of the venture due to such a large amount of DMB being required for adequate treatment.

2. Prof Shepherd's research. Prof Shepherd was given £300k to run pre-clinical trials on a TMAU therapeutic 4 years ago. The project ended 12 months ago, but I have yet to hear the results. I actually contacted Prof Shepherd regarding the results and received no reply. If anyone else has any knowledge of what she actually tried and whether or not it worked, I'd love to know.

Re: Crowdfunding for a cure?

PostPosted: Sun Jun 11, 2017 2:26 pm
by PoetFire
Dr John Christodoulou of Melbourne Childrens Hospital has come up with a few ideas.
His last idea last year was 'drug repurposing' ...
My impression was this was churning current drugs out of patent through a FMO3/TMAU check to see if any of them help.

An estimate was that he would need around $80k ? (IIRC)
But we would need to crowdfund.
Idea fell at first hurdle of course (i.e. no-one wants to be crowfund admin).
Fair enough, as its a taboo subject etc.

If anyone did take control, I would suggest youcaring as the platform.

Re: Crowdfunding for a cure?

PostPosted: Sat Jul 01, 2017 12:44 pm
by sacrosanct
Is there a platform where we can request medical professionals put forward suggestions for possible research into TMAU?

At least at that point we could go to the TMAU community with valid suggestions to crowdfund . . .

Like I said, I would contribute. Hell I'd even be the admin if I thought there were some viable ideas floating around the medical community . . .

If all this requires is someone to get the ball rolling, we'll I'm so fed up of this that I'm your man. I'm also a PhD student so spend the majority of my time reading and writing research papers.

Poetfire, you seem to have a reasonable grasp of who is researching what. Can you reply with what you know, and I'll take it from there and keep you in the loop.

Also FYI, I just shot an email off to Prof. Christodoulou. I'll let you know what comes back.