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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
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

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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

Monday, August 1, 2011

Employment accommodations and Vocational Rehabilitation for body odor sufferers


After brainstorming amongst some of MEBO Research's volunteers on the career needs of sufferers, a few brilliant ideas have come forth. I would like for MEBO to initiate some of these ideas sooner than later. The great thing about the position we are currently at is that MEBO’s Public Relations Director has already made contact with staff members of 2 Senators and 4 Representatives on Capitol Hill, and MEBO’s Community Outreach Director has also establish a good rapport with staffers in Michelle Obama’s Office in the White House. Consequently, we are in a very good position to write to the “right people” to promote our agenda. We thank you Glenna and Cheryl. Below are a few of the projects we have been brainstorming about:

  1. To establish relations with government and private employment agencies and to set up a program geared toward addressing the needs of sufferers, such as working from home, especially during flare-ups, as in the case of women during their menstrual cycle.
  2. To establish rapport with key contacts in the Vocational Rehabilitation Program to establish educational/training projects to help sufferers prepare for, gain or retain employment.
  3. After establishing these contacts and commencing new program options for sufferers, MEBO could consider opening an employment placement department, in which MEBO will work with government and private agencies/companies interested in hiring sufferers diagnosed with TMAU, bromhidrosis, or any other odor condition.

Vocational Rehabilitation (VR) is a federal-state program that works with people who have physical or mental disabilities to prepare for, gain or retain employment. VR is committed to helping people with disabilities find meaningful careers.

In addition to the general customer employment program, VR has additional specific programs designed to help eligible people with disabilities become employed.
New Innovation and Expansion Projects (PDF)


In order to carry out this program successfully, MEBO is asking for volunteers who would be willing to submit a brief testimonial of their respective job-related experiences and challenges, and what possible solutions the sufferer believes would have resolved his or her particular problem. If the sufferer believes that the solution would have been a career change, what type of career and training/education would be required for such a change.

In an effort for this project to have a significant impact when we approach politicians and representatives of these agencies, MEBO’s Raising Awareness would need to get at least 10,000 signatures for it to be presented and recognized at a state level. Although we have received 183 in one and a half months, we need to promote it much more, and to ask family and friends to support us with their signature. We’ve gotten off to a great start, but need to push it much further.

I wish to thank all the volunteers who have been so very much dedicated to this cause. More information on this effort will be forthcoming within the next few months.

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)
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A EURORDIS and NORD Member Organization

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