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March20 podcast Dr Hazen
anti-TMA pill in a year or 2 ? (scroll 12 mins)

Additional info:
MEBO Karen
at UK Findacure conf 2020

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MEBO Map Testing & Meetups

Full details :
want listed ? contact

MEBO - UBIOME study 2018



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

Started May 2018 - Ongoing

Current people sent kits : 100/100
3 kits per person


Participation info : LINK English

MEBO Private Facebook Group
to join : go to
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Join/Watch the weekly
BO Sufferers Podcasts



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

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
NORD Member Organization
See RareConnect 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

Tuesday, December 10, 2013

Reaching Horizon

What would the day be like, when an effective treatment or a cure is discovered?

Some dare not dream for fear the disillusionment will crush any remnant of wearied strength. Even still, some of us dare to dream, as we believe that an answer may very well be just beyond the horizon. Hope increases as volunteers come forward and carry for us the banner of Raising Awareness, Fundraising, Community Outreach support with strong leadership and participation in the various FaceBook sites and RareConnect, and many more projects. We have the wherewithal to make it work. It's a personal choice.

The following is a poem written by one of our own, Ben Rimmer, as he envisions freedom beyond the horizon. Thank you Ben for sharing this with us.

Awaken every morn-
Alive with smile.
Condition unknown,
Ahead lies trial.

Hourglass empties,
Blissful time ended.
Cavernous despair,
Deeply descended.

Sanities savior-
steadfast denial.
Subsequent solitude,
Imprisoned in domicile.

Condition discovered,
Poor Calibans plight.
Societies pariah,
Incessantly we fight.

Strict regimens,
Fruitless solutions.
Hygienic rituals,
Frequent ablutions.

Wistful lives,
Merely surviving.
A measure of Hope-
Research is reviving.

As darkness pierced,
by sun arisen.
A treatment revealed,
Reaching horizon.

Tears of sorrow,
Of unconscionable pain-
Now tears of rejoice,
Falling globally like rain.

Parades and confetti,
Foods of all kinds.
A day to remember,
Within each of our minds.

Even as darkness arrived,
Beginning the night.
An unknown twinkle of sky,
A new star came alight.

Benjamin Rimmer


Anonymous said...

This is a very good poem. I hope the author will write more on this subject and share them with all of us.

Dec 11, 2013, 12:17:00 AM
Anonymous said...

Very nice, i loved it, hopefully one day it will all happen.

Dec 11, 2013, 10:46:00 AM
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