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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

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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

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

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MEBO Metabolic Malodor Survey (international) for Dr Hazen click here
click to Read more/less

survey for ANYONE who identifies with METABOLIC MALODOR

begun : Oct20
end : no ending for now

Regular readers will know that Dr Stan Hazen et al at Cleveland Clinic are developing a TMA-blocker pill, as they proposed in a 2011 paper that TMAO is a factor in CVD. Recently Dr Hazen and colleagues contacted MEBO as they have always thought they could also help with TMAU. This survey is to give them an idea of the 'state of the community'. It is a "version 1". They may not even look (though they have access permission), but it could be useful to give them an overview of the community

MEBO had a zoom call with Dr Hazen and his team in October. Another zoom call is planned when they have time

This is a GOOGLE FORMS survey

short url for survey :
https://forms.gle/vem2TjepKobYZPBu8

current participants : 113 (update 18dec20)

Thursday, May 6, 2021

THE NEW MEBO AFRICA

By Oscar I. Mukiri

MEBO AFRICA CENTER


A longstanding MEBO member of almost 10 years, Oscar I. Mukiri, a.k.a. Shalom to All and Thayu Na Andu Other, has offered our MEBO community the use of his property in Kenya as the headquarters of the new MEBO AFRICA CENTER. In addition,  the head the School of Law of a local Kenyan University has offered legal service pro-bono to register MEBO AFRICA CENTER as a Kenyan Charity.  More information will be forthcoming in the new MEBO AFRICA BLOG very soon regarding this development.  Oscar's title will be registered as the Founder and Executive Director and I will be registered as the Assistant Executive Director, MEBO AFRICA.

At the present time, MEBO Research is registered as a Not-For-Profit Company in England and Wales, and as a 501(c)3 Public Charity in the State of Florida, USA. Although both companies share the same management, each is a separate and independent entity.  The same will be the case of the MEBO AFRICA registration.  This way, each company can be compliant with the laws and guidelines of their respective countries while working towards the same common cause – advocating for sufferers of TMAU and/or PATM, including but not limited to, Trimethylaminuria (TMAU). 

As is commonly known in the MEBO community, most sufferers of odor conditions tend to be underemployed or unemployed and end up being the last to be hired and one of the first to be terminated from employment.  For this reason, MEBO has carried out its Mission with a very minimal income.  Since 2009, MEBO has operated with a 100% volunteer staff and have strongly relied on pro-bono services from many professionals from around the world.  We have made sure that whatever services or funds donated to MEBO have been stretched well beyond expectation, thanks to the tremendous enthusiasm and drive of the members of our community.

What are the goals of MEBO AFRICA CENTER?

  1. REFUGE SHELTER:  The MEBO AFRICA CENTER will be the first MEBO physical homestead in which sufferers from all over the world can find shelter and refuge until they are able to get on their feet again to become independent individuals.

  2. COMMUNITY OUTREACH AND STRATEGY:   We hope to be able to reach out to the professional community throughout Africa, including but not limited to universities, scientific and medical establishments in pursuit of medical and research support for residents and members of the MEBO AFRICA CENTER.

  3. CHARITY SELF-SUSTAINING:  This Center will strive to be self-sustaining with the work and dedication of its members and residents farming the various crops noted on the video above and through programs like Adopt a Beehive. Farm produce and honey will be sold in the market. 

  4. APPLY FOR GRANTS AND DONATIONS:  for the various projects of the Center geared towards obtaining diagnostic testing and treatment, for financial assistance in the beehive and farming goals, and for the general operational expenses of the Charity.


By the way, the new MEBO AFRICA CENTER is located very close to beautiful Kanamai Beach!

On behalf of all MEBO members from around the world, I would like to extend our most profound gratitude to Oscar for his tremendous generosity of not only providing his home for this advocacy goal, but for welcoming sufferers from around the world into his home with open arms.

María

María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)



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A EURORDIS and NORD Member Organization

5 comments:

Anonymous said...

Hi Maria,

Do you have any update on Dr. Hazen's TMA pill since you last spoke with him in October. Have you guys had a second ZOOM call yet?

May 6, 2021, 8:20:00 PM
Oscar aka Thayu said...

You are very generous with you compliments Maria. I'm happy to be of service.

May 6, 2021, 10:07:00 PM
Oscar aka Thayu said...

Thank you Maria. You are very generous with your compliments. I'm happy to be of service

May 6, 2021, 10:09:00 PM
Maria de la Torre, Founder and Executive Director, MEBO Research said...

Anonymous, no news yet. Summer is comming and it's usually vacation time for most, so we'll see what happens in the Fall.

May 9, 2021, 6:38:00 AM
Anonymous said...

Is there any way we can get our hands on some DMB and concoct our own version of a cure?

May 19, 2021, 4:49:00 PM
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