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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
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at UK Findacure conf 2020

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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

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BO Sufferers Podcasts

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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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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

Friday, May 8, 2015

French research group: enzyme neutralizes TMA


SKIN PROBIOTICS FOR
TMAU TREATMENT WITH
GENETICALLY MODIFIED SKIN BACTERIA

The project leader of the French research group who genetically engineered a skin bacteria to make it rich in an enzyme that neutralizes TMA, informs MEBO that he will be giving a talk about their work, including this project, at the upcoming International Society of Microbiota (ISM) conference. It will be the first ISM symposium on skin microbiota, held in Paris on June 17, 2015.

See previous post in this blog about this project, IGEM 2014 competition: French graduates produce enzyme that neutralizes trimethylamine.

MEBO has been in close communications with the project leader of the French research group who have developed a topical cream for TMAU.

We are scheduling a conference call for them and some of the MEBO Directors to discuss possible ways that MEBO can assist in their efforts to get the cream approved by the US Food and Drug Administration (FDA) and the European Medicines Agency (EMA), so that it can be sold to sufferers around the world.
We know that it will take at least one or more large grants to be able to accomplish this, and we are going to do everything possible to support this group in this venture.

We are also trying to schedule a webinar, sponsored by RareConnect, with this French group in the months to come so that sufferers around the world can ask their questions and present their ideas.

The project leader seems as eager to work with MEBO as we are to work with the group, and he tells us that he will be happy to do the conference call and the webinar. It will take time just to set up these communications as well as his presentation at the Symposium, but both the French group and MEBO are very enthusiastically looking forward to working together.

María

María de la Torre
Founder and Executive Director

A Public Charity
maria.delatorre@meboresearch.org
www.meboresearch.org
www.mebo.com.br (MEBO Brasil)
diretoria@mebo.com.br
The MEBO Blog (English)
El Blog de MEBO (español) 
NORD Member Organization
EURORDIS Member Organisation 



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A EURORDIS and NORD Member Organization

10 comments:

Anonymous said...

This just gave me hope again. I hope they can produce something for the internal as well like mixing something with water and drinking it to help break down the food and reducing the odour. Regardless, I can't wait for this!!

May 8, 2015, 10:40:00 AM
Unknown said...

I wish deeply that this research gives results.

May 8, 2015, 1:14:00 PM
Unknown said...

Something promising. Wish more people would come forward with their odor issues so pharma could see there is a need for these meds.

May 8, 2015, 3:22:00 PM
Anonymous said...

I am glad there will be a call for us to get on with them. I personally want to ask if they would use those of us who want to do the human clinical trial.

Now that we have two potential treatments that need funding, how can we all get involved in helping get the word out. I know for myself I personally feel better if I can be a part of moving something like this forward.

May 10, 2015, 9:52:00 AM
blogcontributor2 said...

A webinar may be a possibility in the near future. Then you can ask any questions to them direct. We will give more details hopefully soon, if the webinar can be arranged.

May 10, 2015, 10:54:00 AM
Anonymous said...

Came across this website:

http://www.gofundme.com/

good way to raise funds.

May 14, 2015, 11:39:00 AM
Anonymous said...

Seems promising. I would love to get involved

May 23, 2015, 10:28:00 AM
Anonymous said...

Any updates on this?

Sep 16, 2015, 11:46:00 PM
Anonymous said...

What do we need to do to have them do clinical trials here in the U.S. with the FMO cream and/or enzyme ?

Oct 4, 2015, 8:54:00 PM
Anonymous said...

Is this research down the drain?

Apr 26, 2016, 6:06:00 PM
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