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March20 podcast Dr Hazen
anti-TMA pill in a year or 2 ? (scroll 12 mins)

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MEBO TMAU TESTING DISCONTINUED
(2012-2017)

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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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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
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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

Wednesday, December 26, 2012

NEW GOVERNMENT FUNDS RECEIVED FOR TMAU THERAPEUTIC RESEARCH


NEW GOVERNMENT FUNDS RECEIVED
FOR TMAU THERAPEUTIC RESEARCH

I am very excited to announce that a group of scientists, some of whom are MEBO Research Scientific Advisors, including a world-renowned expert in the genetics and treatment of TMAU, have received a sizable UK government grant for research into a potential therapeutic treatment for TMAU, under a collaborative academic-company funded grant initiative. The selection looked at a variety of factors, including promising laboratory and clinical research, existing infrastructure, and possible advocacy efforts. Private funds will help enormously to complement the government grant and the research. Lead scientists from Trinzyme (UK) Limited ("Trinzyme") are working with MEBO Research ("MEBO") to undertake an international drive to raise
$100,000/USD
or any other currency, British Pound Sterling, Euros, etc.,
to drive this research forward and to ultimately reach clinic trials.

This is an opportunity to research a therapeutic treatment of TMAU! Of all the diseases that could have been selected— thousands of disorders to choose from — TMAU was chosen. We at MEBO, are asking the community to donate whatever they can to further the use of these grant funds, and to brainstorm and volunteer to help create fund-raising projects.


AN INTERNATIONAL CAMPAIGN

HOW TO DONATE: Donators will have the option of donating directly to Trinzyme in US Dollars, British Pound Sterling, or most other currencies. PayPal will convert your currency automatically when you make your donation.

A POTENTIAL THERAPEUTIC TREATMENT FOR TMAU, UNDER A COLLABORATIVE ACADEMIC-COMPANY FUNDED GRANT INITIATIVE
In British Pound Sterling (GBP)








Our study will test a therapy for TMAU that will reduce the amount of urinary trimethylamine excreted.

In United States Dollars (USD)





FOR TAX EXEMPT DONATIONS

If benefactors are looking for tax exemption benefits, donations can be made to the MEBO Research, Inc., 501(c)3 US Public Charity, who will forward the funds to Trinzyme. If so, please email maria.delatorre@meboresearch.org. The MEBO Research company registered in England and Wales, is in the process of registering for Charity status in order to also be able accept tax exempt grants and donations, which will then be forwarded to Trinzyme.


CrowdFunding site with Indiegogo: This site has been created by one of our scientists to help raise funds for this research! You are welcome to use this or any of the other tools to donate towards this very valuable research.


This pre-clinical findings will prepare the way for clinical studies in humans in the future.
This opportunity provided to us by the UK government is very encouraging to our scientific group and to MEBO Research in taking the first steps in this long-term research, ultimately involving clinical trials, with the aim to discover effective treatment for TMAU.


LOOKING FOR VOLUNTEER FUND RAISERS AROUND THE WORLD: This drive will be approaching private benefactors for large grants as well as asking for donations from sufferers around the world. We believe that having this strong government support will propel our efforts forward, but it is really up to all sufferers to come together and to brainstorm on how we can best raise funds for this cause. The perfect place to brainstorm for this is in MEBO Research’s Facebook page, in which posts are only seen by Friends of this MEBO Page, and not friends of friends or publicly. If you are not already a friend in this site, please feel free to send me a friend request or message me on Facebook at http://www.facebook.com/maria.delatorre.39545.

There will be much discussion about this grant in our community, especially regarding the very proactive and assertive fundraising efforts to be carried out in the following months. I hope each sufferer brainstorms and recommends ways he or she can be a part of the ideas they bring forth.


Abstract originally submitted in the MRC grant application

Trimethylaminuria (TMAU) is a disorder in which affected people suffer from severe body odour often accompanied by severe bad breath. The disorder arises because of mutations in a gene called FMO3 and not because of poor hygiene. Why do changes in the FMO3 gene cause body and breath odour? When we eat food that contains choline (which many foods do, e.g. red meat, seafood, some vegetables, soya, eggs and chocolate) then the bacteria that live in our gut cause the problem. The bacteria break choline down to produce a small molecule called trimethylamine. This chemical is the one to which the human nose is most sensitive and which is also the chemical that gives rotting fish its characteristic smell. In people with a normal FMO3 gene there is no odour problem because the FMO3 enzyme we have in our liver changes trimethylamine into a chemical that does not smell. BUT, if the FMO3 enzyme cannot do this, then the trimethylamine is not changed and is excreted in urine, sweat and breath. Social isolation, ridicule and limited employment prospects are experienced by those with TMAU, this usually means a low quality of life; high levels of depression, suicide and divorce occur in this population. Our study will test a therapy for TMAU that will reduce the amount of urinary trimethylamine excreted. Our pre-clinical findings will prepare the way for clinical studies in humans in the future. A reduction in body and breath odour will contribute greatly to an improved quality of life for those with TMAU.

Thanking everyone in advance who will be participating in this mass fund-raising opportunity, knowing that each dollar, each pound, each euro that is collected will be matched by a UK grant!

Please stay tuned to this blog for future updates. You can search for updates by using the keyword, "Trinzyme LTD" in the blog's Search engine.

María

María de la Torre
Founder and Executive Director

A Public Charity
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5 comments:

Anonymous said...

Is the grant proposal available for review?

Jan 6, 2013, 4:22:00 AM
Maria de la Torre said...

Hi Anonymous,

We are anxiously awaiting the public posting of this grant by the UK Medical Research Council. As soon as it becomes public online, we can discuss it at greater detail. Meanwhile, I have written three (3) posts under the direction of the scientists working in this research, to try to bring as much information to sufferers as possible. http://www.bloodbornebodyodorandhalitosis.com/search/label/Trinzyme%20LTD

Jan 11, 2013, 11:45:00 PM
Anonymous said...

Any updates on this research..?

Mar 30, 2014, 9:27:00 PM
Unknown said...

We are now a year into this research!! Would love an update and a little more info about the therapeutic. I think I will be much more likely to donate money with more info.

Jul 14, 2014, 12:15:00 AM
Anonymous said...

Noted the use of crowdfunding for the research. thanks for the info.
5bux.net

Sep 14, 2014, 7:08:00 AM
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