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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

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
or contact
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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MEBO Metabolic Malodor Survey (international) for Dr Hazen click here
click to Read more/less

survey for ANYONE who identifies with METABOLIC MALODOR

begun : Oct20
end : no ending for now

Regular readers will know that Dr Stan Hazen et al at Cleveland Clinic are developing a TMA-blocker pill, as they proposed in a 2011 paper that TMAO is a factor in CVD. Recently Dr Hazen and colleagues contacted MEBO as they have always thought they could also help with TMAU. This survey is to give them an idea of the 'state of the community'. It is a "version 1". They may not even look (though they have access permission), but it could be useful to give them an overview of the community

MEBO had a zoom call with Dr Hazen and his team in October. Another zoom call is planned when they have time

This is a GOOGLE FORMS survey

short url for survey :

current participants : 113 (update 18dec20)

Friday, November 12, 2010

Chat with PTC representative about ataluren

We have had our chat with a PTC representative about ataluren and how the TMAU community could be best prepared to promote research into its use for TMAU cases with nonsense mutations. Nothing concrete came out of the dialogue, although hopefully we have made our case known to PTC at least, and the discussion itself was convivial. The representative was from the Customer Relations Department of the Company.

Here is a summary of the points discussed :

The representative pointed out that ataluren would only be potentially beneficial to those with genetic disorders caused by nonsense mutations. Nonsense mutations usually make up a small percentage of the cause for most genetic disorders.

While PTC is conducting some research studies in-house, it's unlikely TMAU would be added to their in-house list of trials in the forseeable future. It was suggested that our best prospect of getting an ataluren trial for TMAU would be to find a researcher externally, and possibly to lobby the NIH or FDA or other sources of funding.

Ataluren has been trialled in a large study for muscular dystrophy. The original results (mainly based on a '6 minute walk' to look for improvement) were not significant, but other data since seem to have shown improvement. It has been and is now being trialled in a number of disorders. Curiously it seemed to work better at smaller dosages, though this is not an uncommon trend.

The PTC Representative was informed of TMAU and is aware of the MEBO Research website. They pointed out that patient advocacy groups can have important pivotal roles in research, and their muscular dystrophy website was popinted out as a good example of a patient advocacy group acting as a hub and collating data. This is generally how MEBO Research sees it's future role as well. The rep was informed of the TMAU Foundation in New York, and was grateful for this information.

PTC is hoping that if all goes well ataluren will be approved by 2011, though of course this is subject to circumstances.

Overall it was a nice informal chat, and TMAU is now on their radar at least.


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