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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
rareconnect.org TMAU

Popular Posts (last 30 days)

TMAU Movie


THE BOY WHO
SMELLS LIKE FISH

Movie also called,
TREADING WATER
See trailer'
Winner of Golden Trailer Award 2013

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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)

Thursday, March 21, 2019

Upcoming Conference in Netherlands and Belgium April 2019

In collaboration with a small group of TMAU sufferers, the VKS has organized the first official national conference for people dealing with odor conditions, including TMAU. Two guest speakers will give a presentation, Professor Ron Wevers, PhD., expert in the field of genetically determined odor conditions, Radboud UMC "Malodour", and a dietician (To be announced).


DATE: Saturday, April 13, 2019
TIME: 2:00 pm to 5:00 pm
LOCATION: Accommodatie Domstad, Koningsbergerstraat 9, 3531AJ Utrecht
LANGUAGE: The conference will be in Dutch
REGISTRATION:
People can sign up for the conference by sending me an email at crosalia26@gmail.com.
Enrollment has to be as soon as possible, before the end of this month (March).

PROGRAM:

2:00 pm - 2:20 pm: Walk-in with coffee and tea
2:20 pm - 2:30 pm: Welcome by Crissan Rosalia, Health Psychologist, MSc., MEBO Mental Health Director
2:30 pm - 3:30 pm: Presentation on "Malodour" by Professor Dr. Ron Weber, Radboud University Medical Center
3:30 pm - 4:00 pm: Presentation by dietitian (to be announced)
4:00 pm. - 4:30 pm: Discussion / Exchange experiences

LANGUAGE: Dutch
People can sign up for the conference by sending me an email at c.rosalia26@gmail.com
Enrollment has to be as soon as possible, before the end of this month (March).
We are most grateful to Crissan Rosalia for reaching out to experts representing our community in hopes to establish a coordinated effort to find answers, solutions, and some day, a cure.

Some information on Dr. Wevers' work:


"Wevers : New gene suspect for METABOLIC MALODOR : SELENBP1"

Pubmed : SELENBP1 abstract paper



Dr Wevers webpage

Media links on the story :
Gizmodo
Medical Xpress
Science Daily
Genengnews
UCLA press release


María
María de la Torre
Founder and Executive Director


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A EURORDIS and NORD Member Organization

posted by Maria de la T., Founder and Executive Director, MEBO Research on 3/21/2019
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1 comments:

Anonymous said...

Hi,

Is it possible to live stream for those of us who can't attend?

Thanks

Apr 4, 2019, 9:45:00 PM
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