Reserch grant refused: Please send protest email on July 19th

Calling all sufferers from around the world
to an email campaign
on July 19th

RESEARCHING GUT MICROFLORA,
FECAL BATERIOTHERAPY/HUMAN PROBIOTIC

This research would have also explored the possibility of fecal bacteriotherapy/human probiotic infusion as a treatment for odor disorders...we have been deprived of a treatment possibility.

There is a team of UK specialists who got together to write a grant proposal to the Medical Research Council (MRC) for research funding into the specific intestinal bacteria found in the trimethylamine odor suffered by TMAU patients. This research would have also explored the possibility of fecal bacteriotherapy/human probiotic infusion as a treatment for odor disorders, such as TMAU. Unfortunately, this grant application was turned down. Thus, we as sufferers from around the world have been deprived of a treatment possibility by the rejection of this application.

We must unite and persevere in
helping Karen take us to the finish line.

The following is a message from Karen James, MEBO's Public Relations Director, to all sufferers around the world. Karen has played a very proactive activist role in bringing our plight to the MRC with some success, short of receiving research funds.

As some may have already heard, the grant application for research into the intestinal bacteria of trimethylaminuria (TMAU) patients and patients with foul-odour-producing metabolic disorders was turned down the the Medical Research Council. This research could have led to the identification of the specific types of bacteria present in the guts of odour sufferers and to the possibility of using fecal bacteriotheraphy/human probiotic infusion as a treatment therapy.

TMAU and other foul-odour-producing disorders are incredibly distressing conditions and, for many, there are no truly effective treatments available. The number of sufferers is ever-increasing and the number of children being diagnosed is also increasing.

Karen tells us, "I hope to e-mail the contacts [below] with the following words:"

I was extremely disappointed to learn that the grant application for research into the intestinal bacteria of TMAU (Trimethylaminuria) patients and patients with foul-odour-producing metabolic disorders was turned down by the Medical Research Council. This research could have led to the identification of the specific types of bacteria present in the guts of odour sufferers and to the possibility of using fecal bacteriotheraphy/human probiotic infusion as a treatment therapy.

TMAU and other foul-odour-producing disorders are incredibly distressing conditions and, for many, there are no truly effective treatments available. The number of sufferers is ever-increasing and the number of children being diagnosed is also increasing. I would like to urge you to reconsider this erroneous decision and to allow the specialists to research into potential cures and treatments for the condition of Trimethylaminuria as a matter of urgency.

Former campaigns had greater effect when several e-mails and letters were received simultaneously. Our community would be very grateful if you could support us in this venture,


With kindest regards,
[YOUR NAME]

On the 19th of July, as a unified effort by our community, please copy and paste the message above, revise it as you see fit, add, omit, or modify any part of it that you would like, and email it to the list of names noted below. If you send a separate email to one name at a time, it will ensure to not be sent to their Spam folder. Thank you for your participation in this email project. It doesn't matter whether you are in the UK or any other country in the world. This effort is for all sufferers around the world.

WE NEED TO SHOW THAT WE ARE A VERY LARGE NUMBER
WORTHY OF THE INVESTMENT OF THIS GRANT.

linda.willmott@headoffice.mrc.ac.uk
corporate@headoffice.mrc.ac.uk
felicia.rodriguez@headoffice.mrc.ac.uk
GPSD@headoffice.mrc.ac.uk

GrantsPostAward@ssc.rcuk.ac.uk
grants@headoffice.mrc.ac.uk
GrantsMRC@ssc.rcuk.ac.uk
Claire.Wyllie@headoffice.mrc.ac.uk
Rebecca.Hodges@headoffice.mrc.ac.uk
grants@headoffice.mrc.ac.uk
amt@headoffice.mrc.ac.uk

Even though Karen is a teacher and not a scientist or medical doctor, she was able to publish, with her very proactive approach, an article, My body produces an offensively pungent chemical, in the Oxford Journals of the Oxford University Press, InnovAiT. representing a TMAU patient. With her strong sense of community and desire to find the proper treatment for all sufferers, Karen has been a truly dedicated activist for this cause. Let us show Karen our support by taking a few short minutes to copy and paste this message and email it to the addresses below.

An excerpt from this article written by the Oxford Journals staff to medical doctor trainees:

The GP perspective
It is challenging when faced with a patient that you do not know how to
help. The curriculum is vast and reflects the level of knowledge GPs have to acquire, and maintain, over their careers. It is inevitable that you will experience patients from time to time with problems that will stretch your knowledge to its limits. As Karen has alluded to throughout this article, it is important to listen to patient concerns, be open-minded, and be prepared to look things up and/or take advice from both primary care and specialist colleagues if you feel that you are treading on uncertain ground.

Therefore, we must all be encouraged by the results achieved by Karen and those who supported her raising awareness campaign. Nonetheless, there is still much work to do, so please be a part of the solution by participating in the email campaign on July 19th. Thanks to all who participate.

María

María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
maria.delatorre@meboresearch.org
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