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March20 podcast Dr Hazen
anti-TMA pill in a year or 2 ? (scroll 12 mins)

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at UK Findacure conf 2020

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MEBO - UBIOME study 2018



MEBO Gut Microbiome Study
"Microbial Basis of Systemic Malodor and PATM Conditions (PATM)"
Funded by uBiome Research Grant

"Microbial Basis of Systemic Malodor and PATM Conditions (PATM)"

Dynamics of the Gut Microbiota in
Idiopathic Malodor Production

Started May 2018 - Ongoing

Current people sent kits : 100/100
3 kits per person


Participation info : LINK English

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BO Sufferers Podcasts



TMAU Petition world
TMAU UK end total:262
TMAU UK ends 23/01/20
TMAU Petition USA end total 204
USA : Moveon open
TMAU (Dominican)
Metabolomic Profiling Study

Start : Aug 2016
Stage 1 : 27 Canadian volunteers to test
Latest click here (26 oct) :
17 samples returned

Note : Stage 1 is Canada only.
Return cut-off date : passed
Analysis can take 6/8 weeks
Analysis start in/before Nov
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NORD Member Organization
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Denver TMAU Test Lab survey click here
click to Read more/less

USA survey for anyone who wants to improve Denver TMAU test

begun : Dec22
end : no ending for now

A trainee genetic counselor is working at the Denver TMAU test lab. Probably as part of her training. As a project she wishes feedback on any aspect of the Denver TMAU test and process. You can fill in the survey and/or email her (email address is in survey). It's meant for USA people, but perhaps others can give their view too (as we have so few opportunities).

quote from her rareconnect post

"Hello all! I wanted to make you aware of a research study being conducted to better understand the experience and needs of individuals with trimethylaminuria with a goal of being able to create improved patient and healthcare provider education materials. Any participation is completely voluntary and all responses remain confidential. Feel free to use the contact information within the link with any questions or share the survey with others with TMAU."

see this post for more details

Tuesday, April 21, 2009

Exciting news on trimethylaminuria research in Australia

Click here to see full Dr Christodoulou trimethylaminuria research proposalRob Brown Chairman Australian TMAU Foundation

Rob Brown
is the chairman of the Australian TMAU Foundation and, as we have mentioned before, has previously mentioned that research into trimethylaminuria would be forthcoming in the near future. Today he announced on his TMAUcure Yahoo forum that a proposal has now been put forward, subject to fundraising (to the amount of around
AUD $633,000) for the 3 year research program.

The lead researcher will be Dr John Christodoulou (Western Sydney Genetics Program, The Children's Hospital at Westmead, Sydney, Disciplines of Paediatrics and Child Health & Genetic Medicine, University of Sydney, Sydney), who has many years experience in genetics and will be known to Rob and many Australian TMAU sufferers.

The research looks to be the most hopeful research into trimethylaminuria yet, including work to set the latest 'standard' (probably the 'gold standard') in trimethylaminuria urine and DNA testing (which should be completed within a year), and also 2 lines of research into potentially very useful treatments for TMAU.

The first idea is that a drug (PTC124 ... now known as Ataluren) currently under trial, has been shown to allow 'nonsense' mutations to work correctly. This drug may be able to correct enzyme function in those who have nonsense mutations. The research would be on mice. More can be read about Ataluren here

The second line of inquiry is attempting to colonize the gut with a harmless bacteria that has the ability to detoxify trimethlyamine in the gut. If you like, a TMAU probiotic. Again, the work would be on mice. The bacteria is Methylophilus methylotrophus. Presumably either it is naturally rich in FMO3 enzyme, or else it will be genetically engineered to be rich in FMO3.

It goes to show what could be tried if researchers took a direct and serious approach to the problem, rather than research that seems to be indirect. No doubt a group of scientists looking to cure body odor and halitosis (for instance, a government funded Body Odor and Halitosis Research Center set up because of political lobbying pressure) would likely go the same route (such a group first discovering that most cases seem to be metabolic, and then taking the same approach as above)

More posts will follow on this research. A big thank you to Rob and everyone concerned. The blog will be fully supporting this program, and keeping you updated. In a new post, Rob has said he expects his Australian trimethylaminuria Foundation website to be up within 2 weeks or so.


Anonymous said...

Sounds absolutely wonderful! A very, very big thank you to Mr. Rob Brown and Dr. John Christodoulou!

Aug 23, 2012, 11:22:00 AM
Anonymous said...

Any Progress on this. I am desperately waiting for the cure... :(

Feb 13, 2013, 12:51:00 AM
blogcontributor2 said...

Unfortunately funding could not be found for the project. There is a small funded study going on at Monell just now that should give results soon. Also it is hoped that other projects may be possible in the future.

Feb 13, 2013, 10:11:00 AM
Anonymous said...

Still no cure? :( My life has been a NIGHTMARE! tears and so much more:(

Mar 1, 2015, 6:10:00 AM
Anonymous said...

Same here. I drive a city bus and everyday is hell. People give me looks of confusion. I wish the funding would go through so we can just be normal again. I cry sometimes and ask why me.

Mar 11, 2015, 9:30:00 PM
Anonymous said...

I feel depressed and I cannot open up my situation to others. I really hope there's a cure soon.

Mar 28, 2015, 7:20:00 PM
Anonymous said...

My life is just beyond miserable. Please get us a cure for this nightmare

Aug 24, 2015, 2:15:00 PM
Anonymous said...

Hang in there. There is very promising research for a treatment going on as of now(Trinzyme). We are the closets we have ever been to a treatment. There is a reason to be optimistic!!

Aug 27, 2015, 11:05:00 AM
Anonymous said...

If there is a support group for people like us, please post a link. Its hard for me to maintain a job and be around people without being talked about or snide comments. I appreciate that there are researchers on it, but I don't want to lose to my insecurities that developed because of this. I trying to keep it together.

May 4, 2016, 1:39:00 AM
Maria de la Torre said...

please write me an email with this question, and we can discuss it.

May 5, 2016, 10:43:00 AM
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