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"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. " (http://www.rarediseaseday.org/stories/5093)
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 (maria.delatorre@meboresearch.org or karen.james@meboresearch.org ) who will put you into contact immediately with the Relevant Company.
RUSSIAN
RUSSIAN
Требуются серьезные инвесторы или благотворители
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 (maria.delatorre@meboresearch.org или karen.james@meboresearch.org), которая поставит вас в контакт непосредственно с соответствующей компанией.
PORTUGUÊS
PORTUGUÊS
PRECISAMOS DE INVESTIDORES SÉRIOS OU FILANTROPOS
"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."(http://www.rarediseaseday.org/stories/50)
Existe algum filantropo próspero ou investidores sérios por aí dispostos a apoiar uma terapia promissora para Trimethylaminuria?
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 (maria.delatorre@meboresearch.org or karen.james@meboresearch.org) que o colocará em contato imediatamente com a empresa em questão.
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UK 
Spain 
17 comments:
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!
Out of curiosity, what kind of money are they in need of? Thousands? Millions? Is there a way we can raise funds?
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.
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
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. http://gtr.rcuk.ac.uk/…/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.
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.
This is for the same research study currently underway in the UK. As noted in the update post of February 20, 2015, http://www.bloodbornebodyodorandhalitosis.com/2015/02/update-uk-grant-funded-tmau-therapeutic.html. 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.
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...
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, https://www.rareconnect.org/en/community/trimethylaminuria . 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, http://www.bloodbornebodyodorandhalitosis.com/2015/02/update-uk-grant-funded-tmau-therapeutic.html 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.
Great discussions and ideas here.
So is this research on pause or are they still working on it?
Yes, they are still working on it. Funding is very much needed.
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.
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.
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.
We can use tmau rareconnect website as a reference.
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