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

Additional info: https://youtu.be/811v7RLXP9M
MEBO Karen
at UK Findacure conf 2020

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MEBO TMAU TESTING DISCONTINUED
(2012-2017)

MEBO Map Testing & Meetups


Full details : https://goo.gl/TMw8xu
want listed ? contact info@meboresearch.org

MEBO - UBIOME study 2018

'PRESS RELEASE'

NCT03582826
ClinicalTrials.gov

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
& PATM

Started May 2018 - Ongoing

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

NO LONGER RECRUITING

Participation info : LINK English

MEBO Private Facebook Group
to join : go to
or contact
Join/Watch the weekly
BO Sufferers Podcasts

MEBO TMAU Videos

Petitions

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
NCT02683876

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
MEBO Research is a
EURORDIS and
NORD Member Organization
See RareConnect
rareconnect.org TMAU

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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

https://www.meboblog.com/2023/01/denver-tmau-test-survey-tbc-who-it-is.html

Tuesday, May 19, 2009

Australian Trimethylaminuria Foundation Fund : You can now donate online

Australian Trimethylaminuria Foundation Fund : You can now donate online

Regular readers will be aware that the Australian Trimethylaminuria Foundation are co-ordinating in a Trimethylaminuria research proposal led by Dr John Christodoulou. It is now possible to help donate to the fund online, as can be seen on this page : donate to the Trimethylaminuria research proposal .

Rob Brown, the chairman of the Australia TMAU Foundation, will no doubt keep us updated. Their website plans to host it's own forum, but in the meantime Rob can usually be found on his TMAUcure Yahoo Forum.

As Rob says
The Australian Trimethylaminuria Foundation (ATF) serves people with trimethylaminuria (TMAU) and other as yet undiagnosed or undescribed genetically mediated malodour disorders, and their friends, families and supporters.

The ATF’s primary aims are:
1. to facilitate scientific research into better treatments and a cure for TMAU.
2. to provide support for sufferers of TMAU and
3. to promote awareness of TMAU within the medical profession and within the wider community.

The ATF receives no financial support from government agencies but functions by way of donations and the voluntary work of its members.
TMAU is the only accepted 'bloodborne smell' disorder (if a Dr has ever heard of it), but the enzyme bearing the burden of that problem, FMO3, oxidizes many sulfides and amines. So it could be a case that FMO3 is responsible for a lot of various smells, in which case any FMO3 research would be of benefit if this turned out to be a factor. Since both the treatment proposals in this research are to do with FMO3, it would likely be of benefit for any FMO3 smell issues.

Related links:
Australian TMAU Foundation Fund : You can now donate online
Australian Trimethylaminuria Foundation
Trimethylaminuria research proposal led by Dr John Christodoulou
TMAUcure Yahoo Forum
Blog post on the Trimethylainuria research proposal

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