Admin Control Panel

New Post | Settings | Change Layout | Edit HTML | Edit posts | Sign Out

Labels

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

Scroll down and select country
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

Popular Posts (last 30 days)

Upcoming get-togethers


Let us know if you want a meetup listed
Follow MeBOResearch on Twitter

Blog Archive

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

Thursday, July 19, 2012

EMAIL PROTEST CAMPAIGN TODAY

TODAY IS THE DAY OF OUR
EMAIL PROTEST CAMPAIGN

halitosis research
Please copy and paste the following and email it to the links below. You are invited to modify, add, or omit whatever you like, or you make just copy and paste. Please send an email to each link separately, in order to avoid going on the receiver's Spam folder.


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]


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
amt@headoffice.mrc.ac.uk


For more information on the Raising Awareness Campaign, see posts.


THANKS TO ALL WHO PARTICIPATE
from around the world!

María

María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
www.brasil.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)
MEBO Brasil - Blog (Portuguese)



SUPPORT THE MEBO MISSION: Click Amazon button at right sidebar of this blog when shopping online for the holidays
at no extra cost to you.
MEBO gets small commission from Amazon.


Please use your credit card to make your donation to MEBO.


Subscribe for latest posts : Enter your email address:

Delivered by FeedBurner


A EURORDIS and NORD Member Organization

3 comments:

Tiago Lopes said...

Sent it to all of the e-mail addresses.

To all TMAU suffers around the world - we'll make it. Stay Strong!

Jul 19, 2012, 5:28:00 PM
Baguio said...

Done. Please note that one of the email addresses is duplicated ;-)

Kind Regards,


Baguio

Jul 19, 2012, 8:09:00 PM
Maria de la Torre, Founder and Executive Director, MEBO Research said...

Thanks, Tiago and Baguio for your support. It is much appreciated. Together we can make things happen.

I removed the duplicate address posted in error. Thanks for pointing it out.

Jul 19, 2012, 8:15:00 PM
Post a Comment