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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)

Upcoming get-togethers


Let us know if you want a meetup listed
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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

Monday, June 10, 2024

Leveraging Existing Technologies While Awaiting Advanced Detection Methods

Living with MEBO can be challenging and frustrating. While we await the emergence of specialized personal odor testing devices that can accurately detect and measure trimethylamine, there is an opportunity for individuals in our community to contribute to research on long-term environmental exposures. These exposures could include compounds responsible for PATM and MEBO. 

Volatile organic compounds (VOCs) emanating from human skin and exhaled breath are of great interest to researchers in medical and forensic fields. These compounds provide valuable insights into our health, metabolism, and interactions with the environment. However, the study of VOCs is currently limited by the methods used for sample collection and pre-concentration.

One promising technology in this field is the use of wristbands designed to absorb VOCs. These wristbands have been successfully used in studies exploring the complex relationships between the human skin microbiome and the attractiveness of individuals to mosquitoes, as well as the effects of diet and personal care products. By collecting and analyzing the VOCs absorbed by these wristbands, researchers can gain a better understanding of the chemicals we are exposed to in our daily lives and those emanating from our bodies.

Trimethylamine (TMA) presents a significant challenge for detection due to its low abundance, volatility, and unique properties. TMA’s polarity affects its behavior in various contexts, from odor perception to solubility. While traditional wristbands can accumulate a wide range of VOCs, including those related to food exposure and antimicrobial soaps, not all materials have a high affinity for TMA, which hinders selectivity. More research is needed to improve wristbands and other samplers to better detect TMA and other challenging compounds.

Understanding chemical exposure in our daily lives is crucial for public health. A recent innovative study aims to achieve it by enlisting volunteers to wear specialized wristbands for seven days. These wristbands are designed to absorb a variety of chemicals, providing a comprehensive view of the substances individuals encounter in their environment and those emanating from their bodies.

By participating in this study, you can help researchers gather data that could eventually allow for the comparison of results from MEBO community. This research has the potential to benefit our community by providing new insights into long-term odor issues and environmental exposures. 

If you are interested in participating in this study and have questions, please contact us at studies@aurametrix.com or share your insights on Facebook. 

The study is conducted by our friends at Vanderbilt University, led by Dr. Wei Zheng, Anne Potter Wilson Professor of Medicine, and Dr. Martha Shrubsole. 

To join, click this link

Eligibility: Adults ages 40-70 living in Alabama, Arkansas, Delaware, District of Columbia, Florida, Georgia, Kentucky, Louisiana, Maryland, Mississippi, Missouri, North Carolina, Oklahoma, South Carolina, Tennessee, Texas, Virginia, West Virginia.


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Saturday, June 8, 2024

message from FSU IGEM 2024 team (re TMA Breathalyzer)

About iGEM and it's annual competition (this year Oct24)
The iGEM Competition is an annual, worldwide synthetic biology event aimed at undergraduate university students, as well as high school and graduate students. The iGEM Competition gives students
Click to expand for more details the opportunity to push the boundaries of synthetic biology by tackling everyday issues facing the world. Multidisciplinary teams work together to design, build, test, and measure a system of their own design using interchangeable biological parts and standard molecular biology techniques.

The Florida State University 2023 team took an interest in solutions for Trimethylaminuria.
They developed a 'probiotic' that metabolizes Trimethylamine (TMA) in the gut.
As far as we know they got a small grant from FSU to continue after the 2023 iGEM competition.

FSU iGEM team 2024 project : a TMA Breathalyzer.
A TMA sensor is very much needed as most sufferers are anosmic to their smells.
It also seems that often close relatives and other 'loved' ones may be anosmic too (1 theory being they are genetic mix carriers, not enough to be sufferers). 
It's unknown why this is (seems to be true for all types of BO or Halitosis ?).
Theories are like e.g. you get used to it (like lillies), or the brain ignores blood odors.

The 'health' research system has had little interest in TMAU.
Once you understand the system, its a bit surprising any therapy is discovered (at least, within decades).
The covid vaccine showed what was possible when the system focus was sensible. 
Normally that would have taken a decade or 2.

Message from FSU iGEM Team
We are pleased to post a message from the 2024 FSU iGEM team.
Thank you FSU iGEM 2023 and 2024 for your interest in TMAU.
The anti-TMA probiotic concept and a TMA Breathalyzer is as good a combo we could wish for (in terms of a current realistic working therapy). 
Hello MEBO Community,  

Our names are Megan Perusse and Lucas Bonassi, we are third year undergraduate students at Florida State University, and we are the co-leads for the 2024 FSU iGEM team. We just wanted to reach out and update the community on the 2024 project.  

Each year, the iGEM team consists of new members, and those new members select a new project topic to focus on. The 2024 team was moved by the struggles of the TMAU patient community and inspired by the potential impact of the 2023 team, so we chose to continue
 focusing on TMAU for this year’s project. However, we are not continuing to work on the probiotic that was developed by the 2023 team. Further research on the probiotic has been taken up by the FSU Institute for Pediatric Rare Diseases, so we unfortunately
 do not have up to date information regarding the progress of that project. Along with the work being done by the Institute, some current and past members of our 2024 and 2023 teams are working to create a start-up to focus on the potential commercialization
 and further development of the therapeutic and later diagnostic. 
 
Instead, the 2024 team is focusing on developing a breathalyzer device to measure TMA levels. This would theoretically be used along with the probiotic to measure how much TMA the body is producing and therefore how much of the probiotic to use. Our hope is
 that this will allow those of you in the community to gain more freedom in your lives and allow you to manage your symptoms around your life, rather than your life around your symptoms. 

Our engineering team has a design and are currently ordering the supplies needed to begin testing in the lab over the next few months. We will make sure to post another update regarding our progress before the end of the competition in October. At that time,
 we will share with you our project website and video presentation as well.  

Thank you for your continued support, and we are working hard to help the TMAU community!


other links :
https://jamboree.igem.org/2024/home

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A EURORDIS and NORD Member Organization

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