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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

Popular Posts (last 30 days)

Upcoming get-togethers


Let us know if you want a meetup listed

Blog Archive

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)

Friday, February 26, 2010

TMAU Awareness Day : 28th February

tmau awareness daySunday is International Rare Diseases Day, and the good people at rrr-tmau.org have taken the initiative to make it also a Trimethylaminura Awareness Day, including the option to donate to the NORD TMAU Fund. They are going to see how many they can get to donate to the fund and NORD will tell them the total. NORD does not disclose any personal information to rrr-tmau.org, so they do not know who donates unless you wish to disclose to them. Any contribution is welcome, from $1 to as much as you like. The goal is to reach $30000 by October, in which case NORD will then make invitations for the money as a grant for research. Cheryl Marshall has recently written more about the day and fund in the yahoo TMAU forum

Every penny counts- 1's, 5's, 10's whatever one can contribute adds up-please do not be shy about giving what you can.
NORD will tally the total dollar amount-I' m sure they may even be able to count the number of people who contributed as well- I will ask them for both numbers.
Much like the regular donation NORD NEVER reveals the names of the donors-We NEVER know who donates unless they reveal themselves. That is why I tell people that if they are donating and they want me to follow with NORD to make their donations are received they must tell me so when I call NORD I will have a name to ask for. Again let me say we will never know who the donors are.
Donations are accepted ANYTIME - it would be nice if we could get a large total for the 28th but if someone is unable to donate on that day - not a problem - send it later in the week. http://health.groups.yahoo.com/group/Trimethylaminuria/message/3540
Cheryl

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