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

Additional info:
MEBO Karen
at UK Findacure conf 2020

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MEBO Map Testing & Meetups

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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
MEBO Research is a
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

Wednesday, June 23, 2010

Email from the makers of Ataluren, in regard to genetic TMAU

In the TMAU research proposal of Dr Christodoulou written a couple of years ago, he suggested PTC124 (now called Ataluren) could be tried on mice to see if it helps with TMAU caused by nonsense mutations. Ataluren is expected to overule the false 'stop' that nonsense mutations produce, while the protein is forming. The protein could then form correctly. It is already in the later stages of testing with genetic disorders such as cystic fibrosis. Normally, nonsense mutations make up a small % of genetic disorders, around 10-15%.

An email was sent to the company involved, PTC Therapeutics, asking if they thought it may someday be a treatement for TMAU caused by nonsense mutations. This was the reply:

Thank you for your email and your interest in ataluren (formerly known as PTC124) and for letting us know about your organization. We are currently conducting a Phase 3 study of ataluren in nonsense mutation cystic fibrosis and a phase 2a study in hemophilia.

Ataluren may have the potential to treat many genetic disorders in which a nonsense mutation is the basis for the disease. If the studies mentioned above yield positive results we hope to conduct clinical studies in additional genetic disorders. We do not have plans to do a trial in trimethylaminuria at this time.

If you would like to be added to our mailing list to receive updates about ataluren, please follow this link to the contact section of our website: . Be sure to check the box "receive PTC updates."
So far, the only side-effects reported seem to be nausea in some cases. More can be read about Ataluren research in pubmed.

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