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

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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

Sunday, March 3, 2013

World Premier of The Boy Who Smells Like Fish

The amazing Canadian film - The Boy Who Smells Like Fish - had its world premiere last night to a sold out crowd at The Miami International Film Festival -
sponsored by The Miami Downtown Development Authority
Schwatz Media Strategies 3MAR13

In The Boy Who Smells Like Fish, the talented young actor, Douglas Smith skillfully portrays the consequences of constant social ostracism due to his rare disease, trimethylaminuria – the modern day "leprosy." As Mica’s therapist, Carrie Anne Moss brings elegance and sensitivity to her role. Through her, the screenwriters, Javier Gullón and Analeine Cal y Mayor depict the boy’s deep psychological wounds from early childhood to adulthood, and his very poor future prospect in relationships and in career opportunities.
The audience broke out in a great applause [at MEBO's Mission], and even after I sat back down, they kept on clapping, so I had to stand up again.
Zoe Kravitz gives depth to her character, Laura, who is a breath of fresh air with her upbeat and loving way in spite of her own personal challenges. Ariadna Gil, Mica’s mother expertly personifies the torment mothers of children with rare diseases experience, while Don McKellar depicts a father who simply can’t cope with his son’s condition.

In the end, the screenwriter’s use of magic realism as the conclusion to this unsolvable metabolic disorder personifies a defiant spirit that persists without surrender. It attempts to break through the natural barrier inherent in a rare disease and screams, "anything is possible; we just have to believe and reach for it." This film tells the story of a doomed life with a delightful dose of artistic stimulation, and invites the viewer on a journey to break through the obvious limits to follow a dream of what could be. Gonzalo Vega's captivating style is a perfect vessel to draw the audience into this magic realism. Bravo!

After the film had finished, the whole cast, director, and producers went up to the stage for a Q & A session with the audience. When the Director, Analeine was asked the first question, she said that she first wanted to introduce me, asked me to stand up (I was in the audience), and told the audience that I was the founder of MEBO Research, a public charity whose mission is to promote research into trimethylaminuria. The audience broke out in a great applause, and even after I sat back down, they kept on clapping, so I had to stand up again. I never thought TMAU would get such a powerful applause from non-sufferers, so I know the film had an impact and carried the message well.


María de la Torre
Founder and Executive Director

A Public Charity
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