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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

MEBO Private Facebook Group
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

Friday, March 10, 2017

Change of Venue & Agenda: MEBO Meetup/Conference 2017

The Betsy South Beach

Due to a mixup with the Penguin Hotel reservations, the MEBO Annual Meetup / Conference 2017 will have a change of venue. It will now take place in the library of The Betsy South Beach, which is only 4 buildings north of the former location.

The Betsy South Beach
1440 Ocean Drive
Miami Beach, Fl 33139
866 79-BETSY (866 782 3879)

March 31, 2017
8:00 p.m. to 11 p.m.
In hotel Library
Desert, coffee and tea will be served

There will be a $10 cover charge at the door for those who arrive at the conference without having RSVP. Please RSVP to maria.delatorre@meboresearch.org.
We will be meeting for dinner prior to the conference at a restaurant nearby yet to be determined. Light refreshments and desert will be served during the conference for up to 20 people. If you have not yet done so, please RSVP if you will be attending the conference. There will be a $10 cover charge at the door for those who arrive at the conference without having RSVP.

Please RSVP to maria.delatorre@meboresearch.org
if you will attend

The conference will last approximately 2 to 3 hours. As all previous years, the 2017 conference will be an informal event, comprised of the following agenda:

  1. PowerPoint presentation, "Foodstuff", by Professor Elizabeth Shephard, Ph.D, a MEBO Scientific Consultant and a member of the MEBO Institutional Review Board(a.k.a. Ethics Committee). The most perplexing aspect for all sufferers of breath and/or body odor is determining what diet to follow, and which foods could serve as triggers. Prof. Shephard wishes to address this question for us in her presentation. As an FMO3 expert, Dr. Shephard was awarded a grant of 358,000£ (GBP), which is an equivalent to 422K/Euros or 552K/USD, by the Medical Research Council (MRC) to carry out the initial research phase (2013-2016) of "Therapy for the body and Breath malodour disorder Trimethylaminuria (TMAU)". For more information, please see the Gateway to Research, Research Councils UK.

  2. Irene Gabashvili, Ph.D., MEBO's Scientific Director and member of the MEBO Institutional Review Board will be discussing the results of the pilot study of the MEBO Metabolomic Profiling Study, NCT02683876, registered with the U.S. Clinical Trials.gov. Dr Gabashvilli is the registered U.S. Principal Investigator of this study in collaboration with the other registered Principal Investigator, David Wishart, Ph.D., and his staff at the Metabolomics Innovation Center (TMIC) of the University of Alberta, in Edmonton, Canada.

    The aim of this study is the metabolomic profiling of urine samples of persons who suffer from uncontrollable body odor, halitosis, and bromhidrosis for the identification of novel biomarkers, metabolic signatures associated with malodor conditions, and mechanisms in the diagnosis and management of malodor associated with metabolic inefficiencies. The investigators will perform state-of-the art metabolomics tests and bioinformatic data mining to explore whether conditions leading to malodor can be screened by metabolomic profiling of urine samples.

    Based on the Pilot Study results, the research may continue to the following phase primarily with the aim of acquiring many more samples from sufferers to expand our database. Based on the patterns established by this profiling, Dr. Gabashvili, will attempt to identify and classify various causes of breath/body odor conditions and to determine effective treatment solutions where possible.

    Initially one or more of the following assays will be performed for this presentation, but ultimately, all 3 assays will be performed for the pilot phase of this study.


    A link to the TMIC website for each assay lists the range of metabolites that will be covered for this pilot study.

  3. We are very excited with the new discoveries of the 'Potential new causes for the odor-producing disorder TMAU and the article,'Genetic analysis of impaired trimethylamine metabolism using whole exome sequencing', (both published 15 February 2017), by the Monell Chemical Senses Center. Time will be dedicated in our conference for group discussion on these articles and on the Webinar presentation of Dr. George Preti and Yiran Gou, sponsored by RareConnect, to be held on March 27, 2017.

  4. Additional topics will also be discussed, time permitting.
Please make sure that you RSVP if you are attending for the sake of time management during the conference, to and provide enough desert and refreshments for everyone.

María

María de la Torre
Founder and Executive Director

A Public Charity
maria.delatorre@meboresearch.com
www.meboresearch.org
www.mebo.com.br/
MEBO's Blog (English)
El Blog de MEBO (español)
MEBO Brasil - Blog (Portuguese)



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A EURORDIS and NORD Member Organization

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