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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

Scroll down and select country

MEBO Map Testing & Meetups

Full details :
want listed ? contact

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

MEBO Private Facebook Group
to join : go to
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Join/Watch the weekly
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

Tuesday, November 5, 2019

1st Gene Therapy patient for Sickle Cell : FMO3 someday ?

CRISPR gene therapy will likely revolutionize treatment for 'single-gene' disorders, by being able to correct errors in the gene.
CRISPR was first documented in 2012.
It may become a clinical norm in under 15 years.
FMO3 would seem an ideal straightforward gene to edit.

1st patient has received CRISPR gene therapy for sickle cell anemia.
It seems Victoria Gray in the USA is the first patient to be treated with CRISPR gene therapy last month.
Now it's  a case of seeing how she gets on.
NPR radio overview (12 mins audio)
'This is a big moment for Victoria and for this pivotal trial. Because if we can show that this therapy is safe and effective, it can potentially change the lives of many patients,'
Daily Mail article
If you feel your 'met-bo' is caused by error in a single gene, such as FMO3 gene, then CRISPR should be a definite potential therapy in the coming years.
FMO3 : single gene (easiest for CRISPR ?)
most 'TMAU1' cases are MISSENSE variants (wrong amino in either side of 532 amino code)
CRISPR should be ideal for MISSENSE.

Anyone trying out FMO3 on CRISPR research ?
Probably not.
You'd think some government would make a lab try out each genetic disorder for CRISPR, but it seems currently left to labs doing their own thing.
We will need to get an idea of the CRISPR research lab network.
A Chinese lab did try out the CRISPR basic principle on mice for FMO3 in 2015. This is where they see if they can 'knock-out' or 'knock-in' FMO3 'on demand'. It seemed to work. 
Pubmed : China 2015 : FMO3 CRISPR

CRISPR in context for FMO3
It might be a FMO3 'cure' within 15 years.
Maybe even an outpatient treatment someday.
However helpless you feel, you can keep this in mind in the background.

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