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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

Scroll down and select country
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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Blog Archive

UK residents survey : Prof Shephard/MEBO (until 31/1/21) click to visit survey
click to Read more/less

Prof Elizabeth Shephard is conducting a TMAU fact-finding survey for UK RESIDENTS. She plans to use it to raise awareness with decision-makers, such as perhaps MPs. It closes 31 Jan 21.

who is the survey intended for ?
UK residents who identify with TMAU

Living with TMAU study

We invite you to participate in a research project entitled ‘Living with TMAU’.

click to visit survey

survey full url :
https://meboresearch.co.uk/index.php/living-with-tmau-lwtmau-study/

Participation in the project will involve completion of a short questionnaire, which aims to capture the experiences of those living with the condition. There are two questionnaires.

For individuals with TMAU over the age of 18

For a parent or guardian of a child with TMAU.

The results from the questionnaires will be compiled to produce a report that will be available for you to use, for example, to lobby your MP. The findings will be used to reach out to policy makers in the UK to have TMAU recognised as an invisible disability and to make people aware of what it is like to live with the disorder. The report will be made available on the MEBO, UK website.

To complete either questionnaire you must be over 18 and resident in the UK. The questionnaire responses are anonymous and no personal identifiers will be collected.

The questionnaire closes 11:59 pm (GMT) Sunday 31st January 2021.

MEBO Metabolic Malodor Survey (international) for Dr Hazen click here
click to Read more/less

survey for ANYONE who identifies with METABOLIC MALODOR

begun : Oct20
end : no ending for now

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

This is a GOOGLE FORMS survey

short url for survey :
https://forms.gle/vem2TjepKobYZPBu8

current participants : 113 (update 18dec20)

Saturday, April 7, 2018

Location change ONLY for MEBO Conference 14APR18

The location of the MEBO Conference in Savannah, Ga., to be held at 12:00 noon thru 5:00p.m. on Saturday, 14 April 2018 had to be changed to a larger conference room due to a higher expected attendance than originally anticipated.

 MEBO will still have the Suite available at the Fairfield Inn & Suites for those who wish to meetup there throughout the weekend, other than during the conference, to share quality time together in greater privacy than the hotel lobby would provide.

The actual conference will be held at the following location from 12:00 noon to 5:00pm on Saturday, April 14th.

NEW CONFERENCE LOCATION April 14, 2018, 12:00 noon thru 5:00pm. Appetizers will be served. You can also bring your own food and/or drinks, if you like.


Courtyard Savannah Midtown
By Marriott
6703 Abercorn Street
Savannah, Ga 31405
912 354 7878

TRANSPORTATION FROM HOTELS TO THE CONFERENCE:

Anyone staying at the Fairfield or Clarion hotels or anywhere nearby who want to share a ride to the conference, can meet at either hotel at 11:00 a.m. to leave together to the conference. If you have driven to the meetup, please help with the carpool effort to the conference as well. (more information to follow)

MEETUP PLACE (OTHER THAN CONFERENCE) LOCATION


For the Meetup time together other than the 5 hour conference, MEBO will have the King Suite at the Fairfield Inn & Suites, where we could meet in a more private setting in addition to the more open to the public area of the lobby.

Fairfield Inn & Suites
By Marriott
17027 Abercorn St
Savannah, Ga 31419
912 925-5050

For Accommodations information please see the following post in this blog:
http://www.meboblog.com/2018/03/accommodations-agenda-mebo-conference.html


I'm so glad that there is much enthusiasm in our community about this meetup, and I look forward to meeting everyone at this event!


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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