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March20 podcast Dr Hazen
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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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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
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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

Wednesday, March 6, 2013

The essence of a sufferer in the film

Source: EL INFORMADOR.COM.MX, Guadalajara, Jalisco, Tuesday, March 5, 2013 ''The boy who smells like fish'', the return of Gonzalo Vega to motion pictures.

The Iberoamerican featured film, "The Boy Who Smells Like Fish" premiered in the Sala Ernesto Gómez Cruz de Expo Guadalajara in the Festival Internacional de Cine en Guadalajara (FICG) on March 5, 2013 [The Guadalajara International Film Festival].

The Mexican actor, Gonzalo Vega celebrates his return to cinema giving life to a peculiar character in this movie (México-Canadá, 2013), which premiered last Saturday in Miami, Florida. He tells us,

The movie deals with acceptance of persons whom, for one reason or another, "we marginalize sometimes voluntarily or involuntarily...For this I sing to hope, to love, to the I don't care what you smell of, what I care about is who you are. To me this is fundamental in the movie.

This article describes how the Film Director, Analeine Cal y Mayor worked with the main actor, Douglas Smith, who played Mica. She points out that it is not so important that the film strive to present that he is a man that smells of fish, but rather that she wants the character be a solitary man, and that he would be disagreeable, but not visually.

That he smells of fish is not as important, I want to create a rare and solitary person. I liked the fact that the disorder is not something visible. Douglas worked on his movements. These are people with very low self-esteem - those that have Trimethylaminuria. He worked on how to walk; he's a bit hunched. He worked on this, and I was interested in it not being visual.

Douglas said that the disorder of his character is very sad, and that one of the goals of the script was to give him a bittersweet and solitary quality throughout the story.

I had the distinct good fortune of having been invited by Analeine to the World Premier of the Film, "The Boy Who Smells Like Fish” in Miami. To have had the privilege of meeting such a kindhearted person as she, was for me an extraordinary experience. I don't know how to express my gratitude to her and to those who took part in the creation of this movie for the good they have done in giving us an avenue with which we can present our cause to the world. Analeine, Doug, Gonzalo and all who participated in this work do understand us well - we are people with low self-esteme, and it is extremely difficult for us to express our pain and to utter our dreams. But luckily, this film presents them all completely, and aspires to tell them to the whole world. A million thanks to all!


María de la Torre
Founder and Executive Director

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