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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

Wednesday, January 9, 2013

Update on the UK government research grant

DONATE HERE
FOR THERAPEUTIC RESEARCH FUND

http://www.indiegogo.com/odor?show_todos=true

The UK research grant has been awarded because our scientists in the UK have discovered early therapeutic formulations to work in pre-clinical models. They are looking for alternatives to antibiotics, and now want to test the therapeutic formulation that has worked in mice and rats.
Question: What is the research about?


Answer: We are a group of experienced academic and pharmaceutical scientists from across the world, who have banded together to get rid of chronic breath (halitosis) and body malodour associated with Trimethylaminuria (TMAU). We believe it is an eminently treatable disorder, as long as we get the funds to pursue the early therapeutic formulations we have discovered to work in preclinical models. Some of us have formed a company called 'Trinzyme' in order to achieve this aim. We are collaborating with the non-profit charity foundation MEBO to help us meet our goals. We know that the naturally-occurring bacteria in our intestines are intricately related to the disorder, as people with all kinds of gut disorders, and subsequent microbial imbalances in the gut suffer from this disorder very often: with the 'wrong' bacteria in our intestines, our normal decontamination systems cannot cope with the amount of (very odourous) metabolites being produced by these bacteria. Consequently, the bacterial metabolites get in to the blood, breath and sweat of sufferers. This kind of bacterial gut imbalance is very difficult to treat, and antibiotics may actually exacerbate the problem.

In addition, the elderly are particularly thought to suffer from this body odor disorder, because constipation occurs more often in older people, and this makes bacterial imbalances more likely to occur. Therefore, this disorder can happen to anyone, though there are lots of elderly people who suffer. We'd like to help ameliorate this suffering, and help to make life more bearable again for those unfortunate enough to suffer this disorder.

We have found a therapeutic formulation that brings down these levels in mice and rats. The aim of this funding campaign is to help us further develop this therapeutic to help those afflicted with this truly terrible condition. We believe we have a good chance to get to clinical trials and to market in order to help get something out to suffers in the near future, but this is only going to be possible with your help.


Parmaceutical companies will be totally 100% be focused on profits, while we are focused on keeping the cost down for sufferers.
This is the opportunity all sufferers have been looking for. We CAN BE a part of the solution! If we wait for pharmaceutical companies to fund research for us, the cost of the therapeutic will be so high that it will be out of reach to sufferers, especially to those who are underemployed or unemployed. These are ways you can donate so that the cost of this therapeutic can remain low for sufferers to be able to afford it when it comes out on the market. This could only happen if we attempt to avoid utilizing investments from large pharmaceutical corporations, at least in the early stages. Parmaceutical companies will be totally 100% be focused on profits, while we are focused on keeping the cost down for sufferers. So PLEASE DONATE so that this can come to fruition. The average fund

http://support.indiegogo.com/entries/20440977-how-to-contribute-anonymously

YOU CAN STAND UP AND BE COUNTED ANONYMOUSLY!
Most people donate $25 to $50 dollars, pounds, euros, etc. Even if you can only donates $10/USD or £10/GBP or €10/EUR, or whatever your currency may be, this will declare to the world, that you support research into treatment of body and breath odor condition. YOU CAN STAND UP AND BE COUNTED ANONYMOUSLY!

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.

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
www.meboresearch.org
www.brasil.meboresearch.org
maria.delatorre@meboresearch.org
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2 comments:

Anonymous said...

I'd like to contribute but am hesitant to do so because there are seemingly no updates to the trinzyme study beyond an August 2013 letter from Karen. Also, I have found no website for trinzyme and no updates from dr. Shephard. It makes me wonder if the British government funding has been recalled. When will research begin? All of these questions are unanswered. Please be more vigilant in posting updates so that potential contributors know that there is actually a funded research project to contribute to. Most of the trinzyme news goes back to January of 2013. Thank you from a serious potential contributor.

Nov 14, 2013, 7:47:00 AM
Maria de la Torre said...

Hi Anonymous. Sorry for the delay in replying. I have checked further for updates, and I want to write an update post in this blog. Basically, the research is underway, and coming along as expected.

I am delaying in replying because I wanted to consult with the scientists first and because I've been very busy with the preparations for my husband's surgery tomorrow. I will do everything in my power to give an update by the end of the day.

Nov 18, 2013, 1:57:00 PM
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