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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

Tuesday, April 30, 2019

Conference Summary & Survey: Is your halitosis an SELENBP1 mutation?

Summary Conference
Ron Wevers, PhD.
In collaboration with a small group of TMAU sufferers, the VKS organized the first official national conference for people in the Netherlands and Belgium dealing with odor conditions, including TMAU. The conference was conducted in Dutch, and our MEBO Mental Health Director, Crissan Rosalia, was kind enough to translate it for our international community.

The presentations were done by Professor Ron Wevers, PhD., Faculty of Medical Sciences, Radboud University, who has been researching halitosis for many years and who has been supportive to our international community, see all posts in this blog on Dr. Wevers (scroll down to see all), and by dietician Erasmus MC Rotterdam.

Click on icon in the upper left of this post for the summary of the conference.
The conference presentation includes the following:

• Halitosis
• Metabolic conditions
• Characteristic of odors
• SELENBP1 defect – cabbage /rotten egg odor
• Diagnostics and Treatment options for SELENBP1 defect
• TMAU type 1 & 2 and treatment
• Future research ideas for the community of malodour patients
• Presentation from dietician Erasmus MC Rotterdam

Professor Wevers has a couple of suggestions for us as Crissan explains:

His advice is to gather as many people as possible with the same symptoms and characteristic odor types. Then bundle these cases and apply for testing at Radboud Hospital simultaneously, then the lab can compare the DNA results. This might help the lab to find similar mutations amongst the dna samples. The challange is going to be the funding of course, patients might have to pay for the test out of their own pocket. And referral from a physician is still needed.

Click on icon for survey
Based on information Dr. Ron Wevers, PhD., has provided us, Crissan created a screening questionnaire for SELENBP1 that sufferers can fill out to check if they might have an SELENBP1 mutation.

Link to the questionnaire and disclaimer:

Our whole international community is very grateful to Dr. Wevers, dietician Rotterdam, Crissan Rosalia, and all others who worked very hard to bring this conference to fruition.

Some information on Dr. Wevers' work:

"Wevers : New gene suspect for METABOLIC MALODOR : SELENBP1"

Pubmed : SELENBP1 abstract paper

Dr Wevers webpage

Media links on the story :
Medical Xpress
Science Daily
UCLA press release

María de la Torre
Founder and Executive Director

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Unknown said...

How about here in winnipeg canada? Please give me all the details of the presentation. I would like to know more of my condition (tmau). Can I give you my e-mail or can you send me via e- mail the whole presentation. Thank u

Apr 30, 2019, 8:40:00 PM
Simone said...

When we can do this test?

May 7, 2019, 3:29:00 AM
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