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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

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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

Tuesday, November 5, 2019

1st Gene Therapy patient for Sickle Cell : FMO3 someday ?

CRISPR gene therapy will likely revolutionize treatment for 'single-gene' disorders, by being able to correct errors in the gene.
CRISPR was first documented in 2012.
It may become a clinical norm in under 15 years.
FMO3 would seem an ideal straightforward gene to edit.

1st patient has received CRISPR gene therapy for sickle cell anemia.
It seems Victoria Gray in the USA is the first patient to be treated with CRISPR gene therapy last month.
Now it's  a case of seeing how she gets on.
NPR radio overview (12 mins audio)
'This is a big moment for Victoria and for this pivotal trial. Because if we can show that this therapy is safe and effective, it can potentially change the lives of many patients,'
Daily Mail article
How will CRISPR affect METABOLIC BODY/BREATH MALODOR ?
If you feel your 'met-bo' is caused by error in a single gene, such as FMO3 gene, then CRISPR should be a definite potential therapy in the coming years.
FMO3 : single gene (easiest for CRISPR ?)
most 'TMAU1' cases are MISSENSE variants (wrong amino in either side of 532 amino code)
CRISPR should be ideal for MISSENSE.

Anyone trying out FMO3 on CRISPR research ?
Probably not.
You'd think some government would make a lab try out each genetic disorder for CRISPR, but it seems currently left to labs doing their own thing.
We will need to get an idea of the CRISPR research lab network.
A Chinese lab did try out the CRISPR basic principle on mice for FMO3 in 2015. This is where they see if they can 'knock-out' or 'knock-in' FMO3 'on demand'. It seemed to work. 
Pubmed : China 2015 : FMO3 CRISPR

CRISPR in context for FMO3
It might be a FMO3 'cure' within 15 years.
Maybe even an outpatient treatment someday.
However helpless you feel, you can keep this in mind in the background.

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