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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

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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

Sunday, January 22, 2012

Cheryl Fields representing us: Southern Poverty Law Center, and CNN press release

MEBO US's Community Outreach Director, Dr. Cheryl Fields (aka, Dr. StillSanding) is spearheading a couple of great projects for 2012 to raise awareness that we hope will be far-reaching in the US and internationally.
  1. She will be visiting the headquarters of Southern Poverty Law Center (SPLC) in Montgomery, Alabama, representing our community as our Community Outreach Director, where she will be presenting the plight of sufferers of TMAU and other body odor and halitosis conditions. In this visit, Cheryl hopes to establish relations with persons dedicated to equal rights. SPLC's rich history in the civil rights movement is noteworthy, "Since our founding in 1971, we’ve won numerous landmark legal victories on behalf of the exploited, the powerless and the forgotten." This organization has a Teaching Tolerance program, which "produces and distributes – free of charge – documentary films, books, lesson plans and other materials that promote tolerance and respect in our nation’s schools."
  2. Press release with CNN: to raise awareness of the career and social challenges encountered living with TMAU and other yet to be diagnosed body malodor and halitosis conditions.
A note from Cheryl:


I will be going to the Southern Poverty Law Center in Feb. 2012 to talk about TMAU, discrimination, my personal story, and about a human resources director job. I am asking for stories about job discrimination from people with TMAU. We (Maria and I) are also working on a press release and trying to get on CNN. Anyone can go on CNN that wants to. The purpose of the CNN piece will be to show people with TMAU that have been looking for jobs and have been unsuccessful.

Once there was a man with disabilities on CNN and before the show was over he got tons of job offers from the viewers of CNN around the word. We need exposure. I know I will be going on the CNN piece, and one other person. Great way to bring exposure to a delicate situation and get a job offer too. CNN is huge! We also will help our charity, MEBO.

Cheryl

On behalf of our international community, we thank you Cheryl for reaching out to community resources as you state our cause. It's good to know that we have someone like you in the forefront representing us!

María


halitosis research
María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)
The MEBO Forum Please sign the MEBO Petition

body odor petition
MEBO Research

1 comments:

kitty said...

Good luck Cheryl....Well done on all your achievements, and a big thank you for your hard work and commitment on our behalf

Jan 23, 2012, 10:52:00 AM
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