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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

Scroll down and select country

MEBO Map Testing & Meetups

Full details :
want listed ? contact

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

MEBO Private Facebook Group
to join : go to
or contact
Join/Watch the weekly
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

Thursday, July 16, 2009

Mystery diagnosis episode about Trimethylaminuria featuring Cheryl Marshall and Dr Paul Fennessey

Someone has kindly uploaded the recent Mystery Diagnosis case about trimethylaminuria featuring Cheryl Marshall, who founded the NORD Trimethylaminuria Fund. It cannot be understated how grateful we are to Cheryl for bravely appearing on national TV, and for the person who uploaded it to youtube for enabling worldwide viewing of the episode. Thank you both very much.

Cheryl Marshalls fundraising site for the NORD TMAU Fund About the NORD Trimethylaminuria Fund : NORD (National Organization for Rare Disorders, Inc.) is a U.S. national charity that was formed in 1983 by the individuals and organizations who supported the Orphan Drug Act, an important piece of legislation that provides incentives to encourage the development of new treatments for rare disorders. A TMAU sufferer, Cheryl Marshall, set up the TMAU fund. The purpose of the fund is to collect donations that will be used solely towards research into TMAU. When the balance of the fund reaches $35,000 tax deductible contributions, the process of issuing a Request for Research Proposals from research scientists or investigators in the field of TMAU can begin; thus triggering further funding from NIH to set in motion an 'official' research. It is possible to donate online. NORD provides accurate, reliable information and is a strong voice in advocating for needed research and improved treatments. Every month NORD provides a running list of the funds along with the total amount donated in their UPDATE newsletter.
related links: see all youtube videos uploaded by Lillyput2


Anonymous said...

would someone please re-upload or relink to the mystery diagnosis on tmau ? =) We could really use it . THanks J =D

Apr 28, 2012, 2:10:00 PM
Maria de la Torre said...

I wish we could, but as noted in this YouTube site, it have been removed by the user. MEBO have no control over this.

May 2, 2012, 8:24:00 AM
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