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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
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)

Tuesday, October 26, 2010

Ataluren now being tested for methylmalonic acidemia

Note : Ataluren would only be potentially beneficial for those with a genetic disorder caused by a nonsense mutation, which is likely to be a minority

Regular readers will be aware that PTC Therapeutics are trialling a drug called Ataluren which is hoped to be able to 'negate' the nonsense premature stop order that happens with nonsense mutations, and so it is hoped will enable the protein to fully develop. Ideally, this would mean it completely negates a genetic disorder caused by a nonsense mutation although presumably a 100% achievement is not currently expected, and it is more likely hoped to improve the disorder to some degree.

Trials are ongoing using Ataluren as a treatment for cystic fibrosis, with the reported outcome being some improvement. They are also trialling it for hemophilia.

PTC Therapeutics have now released a press statement about their plans for a Phase 2 trial for sufferers who have nonsense mutations for Methylmalonic Acidemia, which is a very serious life-threatening enzyme disorder.

Ataluren is hoped to be beneficial in all enzyme disorders caused by nonsense mutations. Genetic Trimethylaminuria would obviously include a subset who fit this category (those with genetic TMAU due a nonsense mutation), but we do not know what percent of genetic TMAU cases are caused by nonsense mutations. It is likely to be a minority.

- First proof-of-concept clinical study of ataluren in a metabolic disorder -

SOUTH PLAINFIELD, NJ – October 26, 2010 – PTC Therapeutics, Inc. today announced that it is expanding the development of ataluren, an investigational new drug, with the initiation of a Phase 2 clinical trial in nonsense mutation methylmalonic acidemia (nmMMA).  MMA is a rare genetic disorder caused by deficiencies of crucial metabolic enzymes.  Lack of these enzymes causes toxic levels of methylmalonic acid to accumulate in body fluids resulting in life-threatening metabolic complications affecting mainly the brain and kidneys


Anonymous said...

i just saw the program at dicovery home and health, about cheryl! oh girl you are such a warrior, no one could survive at high school whit this trauma! im a medicine student and so intersted on study the case. please keep updating the web page, you are teaching soo many people out there! god bless u

Nov 22, 2010, 6:04:00 PM
Maria de la Torre, Founder and Executive Director, MEBO Research said...

Thank you Anonymous. I will pass your comment to Cheryl as well. Thank you for your support.

Nov 22, 2010, 6:16:00 PM
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