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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
See RareConnect 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

Saturday, August 9, 2014

The RE(ACT) platform : A TMAU researcher will join soon and submit a research proposal

News about the RE(ACT) crowdfunding platform for rare disease researchers

Click to visit RE(ACT) TMAU group
Click for RE(ACT) TMAU group
It seems that a researcher with a long interest in TMAU (trimethylaminuria) research is very interested in making use of the RE(ACT) platform to put a TMAU research proposal forward for consideration. The RE(ACT) scientific committee will then consider the proposal which could take about 3-5 weeks, and then if approved it will be put on the RE(ACT) TMAU page for funding. The researcher is expected to join the RE(ACT) TMAU group and perhaps submit the proposal very soon, perhaps over this weekend. The researchers name will appear on this page when they join RE(ACT) :

RE(ACT) list of researchers for TMAU group 

RE(ACT) TMAU group

The researcher is not 'Olivier M', who is Dr Olivier Menzel, the founder of RE(ACT) and The BlackSwan Foundation.

Estimated cost of  research proposal
Our understanding is that  originally the provisional cost of the scaled back project was estimated at around $65 000, but it seems the project will now be a 'full scale' project possibly to take over 3 years and may be estimated to cost around $484 000. The researcher understands that since the project is an 'initial stage' project, that it may not be approved by the scientific committee.

About donations made to the RE(ACT) TMAU fund  
The RE(ACT) platform is a very new venture, but it seems there are 'contingency plans' in place when dealing with donations. From reading the site and some email inquiries it seems (to be confirmed, please check) :

RE(ACT) and BlackSwan Foundation is a Swiss charity
There's a 10% admin fee on any donation
Donations are via paypal
Donations can be made without signing up to RE(ACT)
Each disorder will have a general fund and a fund for any project
Anything in the general TMAU fund will be given to a TMAU project
If for example funding 'dries up' for a project, the donations may be put back into the TMAU general fund
Any money in the TMAU general fund will not end up in the RE(ACT) upkeep fund
Research proposals from worldwide are welcome

RE(ACT) is a very new and exciting initiative, but let's hope that probably the main concern is clarified by them as they learn over time, that all money donated to the TMAU group should stay within that group (currently the understanding is that this is the case).

New opportunity for TMAU research and for sufferers unlock money available in the community for our future
So we are very fortunate to learn of the new exciting platform that is RE(ACT), and also are fortunate that a TMAU researcher will be one of the first to submit a proposal to the platform on our behalf. Currently there is only one project on the whole RE(ACT) website, which was only approved in the last 2 weeks. Let's hope it is the first of many TMAU research projects (all research projects are welcome), with hopefully (as currently understood) all the donations staying in the TMAU group no matter what.

It would seem that RE(ACT) may become a main focus point for all rare disorders neglected by the health system.


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