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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

Monday, February 3, 2020

Young Florida lady talks TMAU on her local TV news

Dec 2019 :
Young lady from Florida talks about having Trimethylaminuria (TMAU) on the local news.

Alyssa was in kindergarten in North Okaloosa County, when her mom told her she had a rare disease commonly called "fish odor syndrome." Sometimes the smell is not noticeable at all. Other times, such as when she exercises, it can be very strong ...

... Some people with Trimethylaminuria fight depression and thoughts of suicide. Alyssa is determined to live on her terms. As she heads into her mid-teens, when dating could come to the forefront, she says she's not afraid. Alyssa explained, "It's like if they don't want to be with me or be around me because of it, then they don't deserve me. And I don't care."
Link to transcript and video :

15 year old Alyssa talks to her local news station about having TMAU.
The community thank you Alyssa, as it is a very taboo subject.
Her attitude is fantastic.
Note : the item was on the news on 25 Dec 2019

Possible actions :
Send a link to the NIH Director Francis Collins.
Ask to get on local news ?
Ad campaign ?
Other ideas ?

Comment :
Its been a long time since a TMAU item was on TV news or TV at all. Maybe since people now take to youtube, which is there for everyone always.
It's not clear how much impact such an item has on awareness, but everything is welcome !
Probably the big impacts would be high-audience shows, popular youtube channels, or an ad campaign ? 

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Pdag said...

I hope we can be friends alyssa i am from canada i am also a tmau patient....i dont have mich friends because of my tmau....

Feb 3, 2020, 10:57:00 PM
Unknown said...

I am pretty sure I have TMUH but nobody test here how can I get tested? This has ruined my life...need help!!!

Feb 4, 2020, 4:07:00 AM
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