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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)

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Blog Archive

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

Saturday, April 22, 2017

rareconnect TMAU Webinar : Dr Yiran Guo




TMAU Webinar. 3 April 2017.
Dr Yiran Guo.
Geneticist, Children's Hosp Philadelphia (CHOP).

About :
The community funded TMAU study involving 10 TMAU1 volunteers. DNA testing them for FMO3 and whole EXOME sequencing to look for other possible problem genes.

Conclusion :
TMAU may not be only caused by FMO3 faults.

Points of interest :
Dr Guo involved with a 'CHOP' rare-disorder DNA research project that includes TMAU (RD1000, no website).
Wants another 100 samples to learn more from the TMAU research. Probably using whole exome sequencing.

link to paper : impaired TMA and WES (paper 2017)

Webinar platform and hosting (Marta) provided by rareconnect.org

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A EURORDIS and NORD Member Organization

4 comments:

Anonymous said...

WHY HAVEN'T WE HEARD ANYTHING BACK FROM PROCTOR AND GAMBLE ABOUT THE TMAU STUDY THAT THEY ARE WORKING ON WITH THE DMB PILL, I MEAN, THEY'VE BEEN WORKING ON THIS FOR QUITE SOME TIME NOW, AND NOTHING HAS BEEN TALKED ABOUT AS OF YET, I MEAN, SUFFERERS HAS THE RIGHT TO KNOW WHAT THEY HAVE FOUND OR DISCOVERED SO FAR, AND THEY ARE JUST KEEPING EVERYONE IN THE DARK ABOUT THE RESEARCH,AND EVERY SUFFERER THAT I'VE BEEN IN CONTACT WITH ARE GETTING FRUSTRATED BECAUSE OF IT.

Apr 24, 2017, 3:07:00 PM
Anonymous said...

You do know that research you're referring to is for the heart disease patients and yes it may help the tmau sufferers but technically speaking they don't need to update the tmau sufferers because they don't owe it to us. But, if you're referring to the UK tmau research project then you're right we should be more updated that way maybe we could help out with finding grants or something.

Apr 24, 2017, 8:19:00 PM
Anonymous said...

I was told scientists are working on a TMA blocker pill. Would this be similar to statins? That block production of cholesterol in the liver? So this would block TMA production in the intestines I guess. The drug company that invents this pill first is going to be damn rich so plz get going!!!!!

Apr 27, 2017, 2:56:00 PM
Anonymous said...

If you type tmao on Google search and click on news tab there's new updates on choline.

Apr 28, 2017, 3:10:00 PM
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