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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
MEBO Karen
at UK Findacure conf 2020

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MEBO TMAU TESTING DISCONTINUED
(2012-2017)

MEBO Map Testing & Meetups


Full details : https://goo.gl/TMw8xu
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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to join : go to
or contact
Join/Watch the weekly
BO Sufferers Podcasts

MEBO TMAU Videos

Petitions

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
MEBO Research is a
EURORDIS and
NORD Member Organization
See RareConnect
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, February 14, 2012

MEBO's Raising Awareness Video Campaign: Living and Working with TMAU


In the spirit of the Rare Disease Day event to be celebrated on 29 February 2912, the readers of MEBO's blog donated $200 in a brief period of 12 hours for MEBO's Community Outreach Director, Cheryl Fields, to create a video to raise awareness about the psychological, social and economic effects of trimethylaminuria (TMAU) on the lives of its sufferers. Even before it was finished uploading on DRSTILLSTANDING's YouTube Channel, Cheryl had wasted no time in sending this video message to key contacts, including the press.

This is only one of many videos MEBO hopes to create to raise awareness of diverse types of body odor conditions, including halitosis, bromhidrosis, and others.
It is our hope that this presentation will inspire sufferers, experts, family, and friends to help Cheryl develop a Community Outreach Network Program that will support sufferers and reach out to employers, community leaders, and many more key elements of our society. The more volunteers from around the world that come forward for this cause, the more we can exponentially reach more sufferers and make a difference in our quest to find solutions.

Thank you Cheryl for you dedication and steadfastness in being proactive in your efforts to change lives.

If you wish to donate to this Raising Awareness with Videos Campaign,
please use the PayPal donate button below, or contact us at staff@meboresearch.org.
Thank you.



This is only one of many videos MEBO hopes to create to raise awareness of diverse types of body odor conditions, including halitosis, bromhidrosis, and possibly others yet-to-be discovered through research. If anyone has any recommendations regarding the expansion of this program, please use the comment feature on this post, or email MEBO at staff@meboresearch.org.




Trimethylaminuria (TMAU) is a metabolic disorder in which an individual is not able to break down trimethylamine into smaller compounds. Trimethylamine is the compound that gives the patient a bad odor (ranging from fishy, urine, feces, smelly socks, etc.). The odor can come from the mouth, breath, scalp, body, genital area, etc. The FMO3 gene provides instructions for making an enzyme that breaks down nitrogen-containing compounds from the diet, including trimethylamine. This compound is produced by bacteria in the intestine as they help digest proteins from eggs, liver, legumes (such as soybeans and peas), certain kinds of fish, and other foods. Normally, the FMO3 enzyme converts fishy-smelling trimethylamine into another molecule that has no odor. For more information, please contact your personal physician, a local TMAU support group, or MEBO Research, Inc., Cheryl Fields, MBA, Ph.D. (C), Director of Community Outreach Programs, (785)-286-7005, or via e-mail: cheryl.fields@meboresearch.org.
tmauinterviewfinal.mpg

María


María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
www.brasil.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
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A EURORDIS and NORD Member Organization

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