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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

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MEBO survey for Dr Hazen click here
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Regular readers will know that Dr Stan Hazen et al at Cleveland Clinic are developing a TMA-blocker pill, as they proposed in a 2011 paper that TMAO is a factor in CVD. Recently Dr Hazen and colleagues contacted MEBO as they have always thought they could also help with TMAU. This survey is to give them an idea of the 'state of the community'. It is a "version 1". They may not even look (though they have access permission), but it could be useful to give them an overview of the community

MEBO had a zoom call with Dr Hazen and his team in October. Another zoom call is planned when they have time

MEBO Research Clinical Trials

Saturday, April 20, 2013

My interview with ABC Affiliate, WTXL.TV

As part of MEBO Research's ongoing Raising Awareness Campaign, I was interviewed via Skype by Christina Reznack, Reporter at WTXL ABC27 in Tallahassee, Florida. The 2 minute story will air during their 6:00pm newscast on Wednesday, May 1st, and they will be running promotions for it on their social media and programming next week as well. Viewers in North Florida and South Georgia will be able to see it. Afterwards, the longer version of the interview will go up on the web immediately thereafter.

Throughout the years, ABC has made a very strong impact in our community. Had it not been for the ABC News, Primetime Medical Mysteries Story, "The Model Who Smells Like Dead Fish," Without ABC airing Camille's Story, I would not have discovered that trimethylaminuria (TMAU) exits. Primetime Medical Mysteries also aired a piece in 2009 on the the story of Cheryl Marshall's life with TMAU, aired on the Discovery Health channel in the episode, "The Boy Who Stopped Walking."

As a result of the information brought forth by ABC, a group of sufferers established five years ago an organized worldwide campaign, MEBO Research, registered in the US, England and Wales, to not only pursue research for TMAU, but to also initiate exploratory studies to discover other causes of idiopathic odor conditions. I would probably still be looking for some explanation without direction to an uncontrollable, life-altering condition, had it not been for ABC.

I would like to than Christina for reaching out to me and offering me this opportunity to tell our story.

María

María de la Torre
Founder and Executive Director

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

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