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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 survey for Dr Hazen click here
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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

MEBO Research Clinical Trials

Wednesday, June 23, 2010

Email from the makers of Ataluren, in regard to genetic TMAU

In the TMAU research proposal of Dr Christodoulou written a couple of years ago, he suggested PTC124 (now called Ataluren) could be tried on mice to see if it helps with TMAU caused by nonsense mutations. Ataluren is expected to overule the false 'stop' that nonsense mutations produce, while the protein is forming. The protein could then form correctly. It is already in the later stages of testing with genetic disorders such as cystic fibrosis. Normally, nonsense mutations make up a small % of genetic disorders, around 10-15%.

An email was sent to the company involved, PTC Therapeutics, asking if they thought it may someday be a treatement for TMAU caused by nonsense mutations. This was the reply:

Thank you for your email and your interest in ataluren (formerly known as PTC124) and for letting us know about your organization. We are currently conducting a Phase 3 study of ataluren in nonsense mutation cystic fibrosis and a phase 2a study in hemophilia.

Ataluren may have the potential to treat many genetic disorders in which a nonsense mutation is the basis for the disease. If the studies mentioned above yield positive results we hope to conduct clinical studies in additional genetic disorders. We do not have plans to do a trial in trimethylaminuria at this time.

If you would like to be added to our mailing list to receive updates about ataluren, please follow this link to the contact section of our website: http://www.ptcbio.com/5.0_contact_us.aspx . Be sure to check the box "receive PTC updates."
So far, the only side-effects reported seem to be nausea in some cases. More can be read about Ataluren research in pubmed.

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