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

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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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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

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Blog Archive

MEBO Research Clinical Trials

Click here to read details of the MEBO Clinical Trials
NCT03582826 - Ongoing not recruiting
Microbial Basis of Systemic Malodor and PATM Conditions (PATM)
United States 2018 - ongoing

NCT02683876 - Completed
Exploratory Study of Relationships Between Malodor and Urine Metabolomics
Canada and United States 2016 - ongoing

NCT03451994 - Completed
Exploratory Study of Volatile Organic Compounds in Alveolar Breath
United Kingdom and United States 2013 - ongoing

NCT02692495 - Completed
Evaluation of Potential Screening Tools for Metabolic Body Odor and Halitosis
United Kingdom 2009 - 2012

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 T., 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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