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

Additional info: https://youtu.be/811v7RLXP9M
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MEBO TMAU TESTING DISCONTINUED
(2012-2017)

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want listed ? contact info@meboresearch.org

MEBO - UBIOME study 2018

'PRESS RELEASE'

NCT03582826
ClinicalTrials.gov

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
& PATM

Started May 2018 - Ongoing

Current people sent kits : 100/100
3 kits per person

NO LONGER RECRUITING

Participation info : LINK English

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BO Sufferers Podcasts

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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
NCT02683876

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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rareconnect.org 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

https://www.meboblog.com/2023/01/denver-tmau-test-survey-tbc-who-it-is.html

Tuesday, October 16, 2012

TMAU Film: The Boy Who Smells Like Fish


There is a new film by Alliance Films, directed by Analeine Cal y Mayor, starring Douglas Smith, Zoe Kravitz, Carrie-Anne Moss, and Ariadna Gil, which depicts life with TMAU.

It is about the life story (from birth to young adulthood) of a boy who has Trimethylaminuria. Based on the trailer (currently for private viewing only), I can see that this topic is handled in a very moving and sensitive manner. The following are some with quotes from the trailer,


"Dad, why do I stink?"
"You don't stink." he replies opening the car window with the air freshener in the car...

"Trimethylaminuria, that's what you got." says the doctor.

"I'll change my diet, that's all I can do"

"It helps to have answers." the boy is told.
"It helps to confirm that I'm a fucking freak," he replies.
"We all have our little quirks, and it's those quirks that make us unique."

"YOU FIND THAT PLACE WHERE YOU CAN BE YOURSELF"

"Hey, what's that smell, You cooking paella?"
"Love is in the air, can you smell it?"

ABOUT THE CAST

Douglas Smith, from HBO Series, Big Love, portrays the main character with TMAU.
Zoe Kravitz, daugther of Lenny Kravitz.
Carrie Ann Moss, from the Matrix.
Ariadna Gil from Pan's Labyrinth.



In this film, TMAU is wisely used as a metaphor to talk about being different. As such, it serves to build a bridge over the divisions between sufferers and non-sufferers in a journey through which the main character discovers the value of self and of a life that can easily be hidden behind the odor. The film is a comedy, which at the end, brings a message of hope as it creates a lovable character with irony and humor.

In addition to TMAU, there are characters with more life-threatening diseases, such as terminal cancer, from which the main character takes perspective and chooses his attitude towards life.

It is the director's hope that this film will make the audience aware of ways of approaching sufferers without the obvious prejudice, such as doubting a person's higiene.

As we approach the month of March, closer to its release, we will begin "making noise" promoting this film in a powerful way.

WHAT A FANTASTIC RAISING AWARENESS TOOL,
AND WHAT A HEALING TOOL FOR OUR COMMUNITY!
María

María de la Torre
Founder and Executive Director

A Public Charity
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maria.delatorre@meboresearch.org
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A EURORDIS and NORD Member Organization

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