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

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MEBO Karen
at UK Findacure conf 2020

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MEBO Map Testing & Meetups

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MEBO - UBIOME study 2018



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

Started May 2018 - Ongoing

Current people sent kits : 100/100
3 kits per person


Participation info : LINK English

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to join : go to
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Join/Watch the weekly
BO Sufferers Podcasts



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

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
NORD Member Organization
See RareConnect 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

Saturday, February 28, 2015

Serious Investors or Philanthropists Needed

Click icon to read Tracy's TMAU story 


"Every day is a fight for survival and for a life that I have never had .... I am a forgotten leper, a fairy tale ogre; isolated, an outcast, unworthy of time, understanding, help or freedom. I beg the Medical Community as A Whole do not allow this LACK of Awareness, support or Advances to continue - nobody Deserves this torturous segregation. " (

Are there any philanthropists or serious investors willing to back a promising therapy for Trimethylaminuria?

Wealthy individuals are sought for investment discussions with a trusted, UK-based, biotech company looking to raise capital for continued research into a very promising TMAU therapeutic. This treatment could potentially handle both primary and secondary versions of TMAU. It is also a great opportunity for investors to have a stake in a company actively looking at therapeutics for other disorders and diseases.

Confidentiality would be assured, and any interested parties would be invited to sign a confidentiality agreement before being shown data about the project.

Please e-mail MEBO ( or ) who will put you into contact immediately with the Relevant Company.


Требуются серьезные инвесторы или благотворители

“Каждый день это борьба за выживание и за жизнь которую я никогда не имел .... Я забытий прокаженный, людоед из сказки; Изолированный, отверженный, недостойный времени, понимания, помощи или свободы. Прошу медицинское сообщество в целом не позволяйте етому отсуствию осведомленности, поддержки или прогресса продолжатся - никто не заслуживает такой мучительной сегрегации.”

Есть ли богатые филантропы или серьезные инвесторы которие готовы поддержать перспективную терапию для Триметиламинурии?

Эта процедура потенциально может справиться с первичной, так и с вторичной версией Триметиламинурии. Это также прекрасная возможность для инвесторов, чтобы иметь долю в компании которая активно ищет терапевтику для других расстройств и заболеваний.

Конфиденциальность будет обеспечена, и все заинтересованные стороны будут приглашены подписать соглашение о конфиденциальности, прежде чем данные о проекте будут показаны.

Пожалуйста, напишите организации MEBO ( или, которая поставит вас в контакт непосредственно с соответствующей компанией.



"Cada dia é uma luta pela sobrevivência e por uma vida que eu nunca tive …. Eu sou um leproso esquecido, um ogre de conto de fadas; isolado, um excluído, indigno de tempo, de compreensão, de ajuda ou da liberdade Peço à comunidade médica como um todo não permita que essa falta de consciência, apoio ou avanços para continuar -. ninguém merece essa segregação torturante."(

Existe algum filantropo próspero ou investidores sérios por aí dispostos a apoiar uma terapia promissora para Trimethylaminuria?

Pessoas ricas são procuradas para discussões de investimento com uma confiável empresa de biotecnologia baseada no Reino Unido, procurando para levantar capital para a pesquisa continuada em uma terapêutica TMAU muito promissora. Este tratamento pode potencialmente lidar com versões tanto primárias e secundárias de TMAU. É também uma grande oportunidade para que os investidores tenham uma participação em uma empresa ativamente à procura de terapias para outras doenças e enfermidades.

Confidencialidade estaria assegurada, e os interessados serão convidados a assinar um acordo de confidencialidade antes de serem mostrados os dados sobre o projeto.

Envie um e-mail MEBO ( or que o colocará em contato imediatamente com a empresa em questão.

A Public Charity

A  EURORDIS  and  NORD  Member Organization 


Maria de la Torre said...

Please forward this message to any interested investor you may know.
Please read all the Rare Disease Day 2015 activities you can participate in and let the world know we are organized as a organization member of NORD and EURORDIS pursuing research and raising awareness!

Feb 28, 2015, 10:56:00 AM
Unknown said...

Out of curiosity, what kind of money are they in need of? Thousands? Millions? Is there a way we can raise funds?

Feb 28, 2015, 1:05:00 PM
Maria de la Torre said...

To bring the research to the clinical stages and to its conclusion, it will require millions. Nonetheless, a few thousands here and there will help us move forward. We have already received a few hundred thousands British Pounds, and much has been accomplished with this fund, but we still need a great deal more to see this research to its conclusion. Thanks for your inquiry.

Feb 28, 2015, 4:54:00 PM
Anonymous said...

a lot of people that i know say that they would be more than happy to help, but, there's one thing stopping them, the people doing the research studies are not keeping the people that has trimethylaminuria informed on how the research is going, meaning, they are not giving updates on the research, and therefore no one wants to give, if they are hearing nothing on how its going..point blank

Mar 1, 2015, 12:14:00 PM
Maria de la Torre said...

Some sufferers are becoming impatient and asking for the scientists who are carrying out the UK TMAU therapeutic research to give an update now, only 1 1/2 years into this initial phase.…/772B5BB8-C185-455B-9AE2-C4BC7F8369DF
Looking at this from the sufferer's point of view, 1 1/2 years is a long time to wait while experiencing symptoms and the psycho-social consequences. On the other hand, looking at this from the scientists' point of view, we've only just begun. It's very early in the process.
Scientists tend to be very closed lip while carrying on research. Mostly because they are in the process of gathering data to prove their theory. So, what if their research data proves their theory to be wrong, and then the theory is modified and tested, etc? If they had commented along the way, they would eventually be accused of making false claims, and rightfully so. They can't make any claims until they test their theories using the scientific method. It takes years before they can arrive at the point of being able to talk about it with some degree of certainty.
This is something we need to learn as sufferers waiting for research to be concluded. It is a great unknown; it is an exploration into a possibility, and it must be rigorously tested, modified, an re-tested until a level of certainty is obtained.

Mar 1, 2015, 2:53:00 PM
Anonymous said...

Is this funding for the same research effort that has been going on in the UK, or is it for a different company entirely? If it is a separate research effort, then does the second effort duplicate the first in any way? There is much here that is unclear.

Mar 1, 2015, 4:08:00 PM
Maria de la Torre said...

This is for the same research study currently underway in the UK. As noted in the update post of February 20, 2015, The grant fund period is from August 2013 through August 2015 and the project is still active and progressing very well. We want to make sure that there will be funding for the following stage(s) of this study, so therefore, we are seeking prospective serious investors to invest in this promising biotech therapy.

Mar 1, 2015, 11:41:00 PM
Unknown said...

Again, out of curiosity. It's probably unrealistic that a single person or persons will have millions to donate to research... Especially for something that may help less than 1000 people. Is it profitable for investers? I know they were trying to keep their therapeutic put of the hands of big pharma, but isn't that where it's going to end up inevitably? I for one am super excited about this prospect of a therapeutic. Although impatient I would never intrude on the researchers. However I check mebo site often to see if any updates. Mebo is somewhat of a connection between sufferers and researchers...

Mar 2, 2015, 2:30:00 AM
Maria de la Torre said...

There are investors out there looking for projects to invest in. Yes, they look at the potential returns to their investment, and rare diseases aren’t always in the greatest demand for the larger population. It’s really up to the scientists to discuss one on one with the investor to present the possible ramifications of the therapeutic, especially if it may potentially also be beneficial to other diseases. I’m not saying that this is the case, but I’m saying that there are possibilities that we may not be aware of, but the scientists will be able to discuss this with investors.

Using an example of a drug that inadvertently worked for a different medical condition, the drug chloroquine is an antimalarial drug originally designed specifically for malaria. However, people with rheumatic conditions, like rheumatoid arthritis who received this therapeutic treatment for malaria, found that it also worked very well in controlling some rheumatic diseases. This led the medical community to begin prescribing hydrochloroquine for some rheumatic conditions, and therefore, the drug is now in much greater demand than originally intended.

Again, I’m not saying that the therapeutic currently being researched for TMAU will be beneficial for other medical conditions, but I am saying that one never knows what information the scientists will be able to share with the investors to determine what the possibilities are. Nonetheless, scientists do not share information with the general public at such an early stage to prevent making false claims not substantiated with scientific data.

Another very beneficial approach is that MEBO is very well connected with NORD and EURORDIS, and some MEBO directors are moderators of the RareConnect site, . This brings us closer together to other rare disease groups, thus creating a stronger stance politically and allowing us the opportunity to work closer together with other rare disease groups towards a common goal.

I do hear you that you are saying that even though MEBO doesn’t receive any new information about the research study as it is being currently carried out, it would be more beneficial to the community if we just reiterate that the research study is still progressing very well and that it is very much alive and well. See latest update, I will give more frequent updates in this blog, in order to reassure our community that things are moving along. Thank you for your comments.

Mar 2, 2015, 4:45:00 PM
Unknown said...

Great discussions and ideas here.

Mar 2, 2015, 10:08:00 PM
Anonymous said...

So is this research on pause or are they still working on it?

May 7, 2016, 6:11:00 PM
Maria de la Torre said...

Yes, they are still working on it. Funding is very much needed.

May 16, 2016, 12:21:00 PM
Maria de la Torre said...

There will be an update in about a month or two about the new phase of the TMAU therapeutic study. As I mentioned before, funding for this program to move forward is essential.

May 18, 2016, 3:48:00 PM
Anonymous said...

I am a researcher and part of a Rare Disease think-tank in the States. This disease is intruding as a therapeutic target, since the genetic cause is well understood. Where MEBO could help, is with getting a better handle on the number of patients (prevalence/incidence)suffering from TMAU. This is the biggest unknown (risk) that companies/investors will need to overcome.

May 19, 2016, 10:06:00 AM
blogcontributor2 said...

Thanks for the comment.
is 'intruding' a typo or jargon ?

RE numbers :
imho I reckon many 'carriers' of this are in fact 'transient sufferers', perhaps due to a polymorph combo and/or the gut flora composition (a syndrome) ...meaning far more cases than estimated. I would guess we are probably the biggest 'rare disorder' if you include transients. But how we show we are a big group, I don't know.

May 19, 2016, 8:45:00 PM
Anonymous said...

We can use tmau rareconnect website as a reference.

Sep 4, 2016, 9:27:00 PM
Anonymous said...

Doy las gracias infinitas a mebo maria de la torre por todo el trabajo por encontrar tratamiento y hacernos saber que no estamos solos y estoy segura que esta enfermedad tiene muchos pacientes que no aparecemos en la estadistica los medicos aqui en colombia no conocen y jamas han escuchado la palabra trimetilanuria es mas facil remitir al paciente a un buen siquiatra o mejor aun a mejorar la higiene personal e tenido e no somos unicos en este pais son muchos los pacientes los que e encontrado en los blog mebo y desearia que los medicos conocieran esta enfermedad seguramente habran muchos pacientes que aun no han logrado encontrar un diagnostico y ojala los cientificos medicos laboratorios la sociedad que cada dia que pasa es un dia que perdimos necesitamos compartir todo lo maravilloso que tenemos de nuestros hijos esposo familia

Mar 8, 2017, 10:53:00 PM
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