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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

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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

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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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

Thursday, April 18, 2024

update : E-esperance (TMA zapping ) 'probiotic' and TMA breathalyzer (via FSU IGEM team 2023 and 24)

E-esperance and Florida State University IGEM 2024 update (IGEM competition is in Nov24) :

Had a chat with 2 members of the FSU IGEM 2024 team. 
the 2 main news stories are :

1.
E-esperance TMA-zapping probiotic project is continuing as a sort of IGEM FSU "team of 23 pre-company" project at FSU. 
Most of the 23 team have left but 2 are still working on this as a post-IGEM pre-company thing (curently based at FSU ?) to hopefully become a private company. 
The 2 from the 2024 team I talked to dont know much as it's not their project. Looks like it will be a liquid you take maybe 3 times a day and decide the dose etc.
This is how the conversation is recalled (could be wrong).

2. 
This years FSU IGEM 24 team's project is likely to be... a TMA breathalyzer sensor.
I guess probably will be like the Foodmarble Aire but to detect Trimethylamine.  
This is for the November IGEM comp, so I guess they are at the early stages. Maybe subject to change.
TMAU / FMO3 Malodor sufferers tend to be unable to smell themselves, and neither can family (due to genetics ?) and some others (? carriers ?), so a device to monitor is a necessity really. 
The idea is to maybe use it in tandem with E-esperance. 
e.g. 
use device on waking.
set dose of E-esperance (it's a liquid).
They said wait 2 hours to eat meal (it's early days).
And maybe take e.g. 3 doses a day.
The IGEM 23 team wiki suggested it would cost maybe $10 a week, but this couldn't be confirmed in the chat.

So the 24 team are working on a TMA-breathalyzer device for the November 2024 IGEM comp.
The 24 team aren't working on E-esperance (that's a separate project). I guess long-term the 2 might become 1 project.

Hopefully these 2 projects will result in :
E-esperance TMA-zapper liquid probiotic.
a TMA Breathalyzer      

No update on e-esperance was available. the 2 from the 24 team said they aren't updated much either, but may have an update in a few months. Don't think its been tried on humans yet. A I recall the concept was proven (in a dish) for the 23 IGEM conference.
E-esperance seems to be based on 3 enzymes very good at metabolizing TMA which are genetically inserted into benign E-coli bacteria, to be taken like a TMA-specific probiotic (if you want to think of it as a probiotic).

all known info on E-esperance is from the FSU IGEM 23 comp pages (which was also updated after the event).
Fantastic info that covers everything about it (until last update).


These 2 projects would seem the "best" possible projects for TMAU/FMO3 Malodor 
(aside from FMO3 gene therapy in humans, which medium term is probably likely from the clinical sector).

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A EURORDIS and NORD Member Organization

2 comments:

Anonymous said...

Sounds wonderful but it's a lot for young people to focus on for several years. Perhaps we could organize
an "encouragement" committee or forum just so they don't forget us!

Apr 18, 2024, 10:45:00 PM
blogcontributor2 said...

good point.
I think the idea of IGEM is potentially they can become businessess, but often don't.

It seems e-esperance is in 'pre-private company' mode while getting help from FSU currently. I think the 2 working on it from the 2023 team are still students 9don't know) or perhaps graduated (I think most have).
So this is still 'live' and looks like it will become a private company. They got funding from a new FSU 'rare disease' grant or something for 6 months.

I guess the same is possible with the TMA breathalyzer. At the moment it's a student project for Nov24 IGEM. Or they could become part of same company maybe.
I've said to the 24 team they could make the device pre-order, so they can see demand and get funding etc. Hope they do that.
Hopefully if no-one takes it on after IGEM they can maybe find someone that will.

Apr 19, 2024, 1:32:00 AM
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