Charity and Spokesperson

Dr Dolphin was part of the team who first demonstrated that mutations in the FMO3 gene are the cause of the inherited (primary form) of TMAU.

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Charity and Spokesperson

Postby northstar » Tue Dec 16, 2014 3:40 pm

Hi Dr Dolphin,

I would firstly like to ask if there is a registered charity dedicated to TMAU to raise money for research and hopefully a cure in the UK? if so could you provide the details for me to liaise with the appropriate person thank you.

Secondly, i am contacting Celebs via my twitter and email to try and get a Celebrity to represent us and raise money for us via Charity work.
I hope i can get some interest in the topic as it is crucial to have help and support and resolution in this.

Personally, it's been a very progressive debilitating disease, not only with its physical effects of TMAU but more importantly the impact its had on my mental state, the depression, isolation, anxiety, fear of going out has all taken its toll over the years as i have battled through it all my life, so far.

Anyone who has TMAU will understand that coping with the psychological symptoms of TMAU is indeed challenging, and this site has actually helped me with practical advice to help try to curb symptoms, for some people its workin for, some not, but more importantly it has brought hope.
northstar
 
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Re: Charity and Spokesperson

Postby FADworker » Thu Mar 26, 2015 10:33 pm

Hi northstar

I can't think of any specific charity that might be specifically interested in TMAu. I wrote two grant applications to the UK Medical Research Council over the last few years designed to investigate the relationship between the sorts of bacteria in the gut and TMAu but niether was able to convince the reviewers that they should be funded. It is difficult to persuade reviewers that a condition that results in an offensive body odour is really worth funding. There are many 'rare diseases' that result in more obvious debilitating symptoms, including early death, that do attract grant funding. Don't give up though - we know that TMAu is a debilitating condition and, as such, deserves research funding into possible therapeutic interventions.

Colin
FADworker
 
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