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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
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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

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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

Sunday, July 29, 2012

MEBO Research receives $1,000 donation from anonymous


Yesterday, MEBO Research received a $1,000/US donation from a person who asks to be kept anonymous.

I am deeply moved by this exceptionally generous contribution to support MEBO’s quest for research into the causes and treatment of malodor conditions as we strive to find a cure.

I asked this very kind person which MEBO Program this fund should be used for. The three research projects MEBO has initiated or is working on developing are:

  1. Alveolar Breath Exploratory Study : to identify abnormal levels of odorous volatile organic compounds (VOCs) common amongst participants, to then identify their source to develop a targeted treatment protocol.
  2. DNA research : Exome sequencing or full genome research to identify the causes of a variety of malodor conditions. This may someday lead to effective gene therapy.
  3. Gut microbiota : Researching gut microflora, fecal bacteriotherapy / human probiotics

Since it has always been MEBO’s policy and procedure to encourage volunteers to be self-directed in a coordinated effort, I strongly believe that persons who donate their time or funds should have their say on how they would like their works and/or contributions to be carried out. This was the reply I received from our generous donor.


Hi Maria! I think you and others are doing an excellent job with this research and I believe it's a great cause.

I'm happy to help and plan to donate more in the near future. As for my donation, please feel free to use it for any type of research needed.

…Also, you're definitely more than welcome to announce the donation. The only thing I want anonymous is my name. Thanks.

With much critical thinking, the following arguments were considered and discussed at length with some MEBO members, and a decision has been arrived at. Since the only MEBO formal research study currently active at this time is the Alveolar Breath Exploratory Study, which is showing some very interesting data so far with only 10 persons already tested, I have concluded that this fund will be best invested in this project. MEBO Research is currently very proactively pursuing research grants to cover the total cost of this study with hopes to be able to recover this investment as well as the expenses already incurred by each participant.

If we are able to recover this $1,000 fund with a larger research grant, then the $1,000 could be used again towards MEBO's other future research projects. However, we don’t know when or even if our grant-writing efforts will come to fruition, although we are optimistically hopeful. Nonetheless, it has been decided that this donation will be applied towards providing accessibility of the test to more sufferers who may be willing to pay for their test, since the expense of getting the equipment to a location that would be accessible to many sufferers had been prohibitive up to now. This $1,000 donation will now make it possible for more location to be set up to collect data for the Alveolar Breath Exploratory Study.


Again, we can’t thank enough this anonymous donor and all other donors who have given their hard-earned money to help promote our fight against malodor conditions so that sufferers around the world can lead happy and productive lives.

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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A EURORDIS and NORD Member Organization

2 comments:

Cheryl Fields, MBA, Ph.D. (ABD) said...

Maira:

This is EXCELLENT news for MEBO and the TMAU community and BO/BB community. Thank God for this wonderful person!

Maria and team, you all are doing a wonderful job!

Very Sincerely,


Cheryl Fields
Dr. StillStanding
(785)-286-7005

Jul 29, 2012, 7:06:00 PM
Anonymous said...

Great news Maria!

Jul 30, 2012, 7:07:00 AM
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