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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

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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
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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

Monday, November 25, 2019

Gene Therapy : 1st 2 USA cases went well

Gene Therapy will likely be the ultimate cure for SUB-PAR FMO3 function ('TMAU1').
The 1st 2 cases of CRISPR Gene Therapy in the USA are happening this year.
An update this week said they were going well (after initial therapy).
The 1st 2 cases are for Genetic blood disorders.
It's likely over the years it will be good for all genetic disorders (especially single gene).

Gene Therapy quick unchecked history
pre-2012 : very difficult to do
2012 : CRISPR method makes gene knock in/out very easy and affordable. Seen as a 'T-model Ford' moment.
2019 : Base Editing method shown. Most single-gene disorders will need base editing.
2019 : First 2 cases of use in humans for single-gene disorder.

FMO3 Gene Therapy
It's unknown when FMO3 would be trialed by a health system or private company.
All the 'obvious serious' genetic disorders are ;likely to be at the front of the queue.
They still need to see how the 2 cases get on (but looking good after around 3 months).
They will need to find out delivery methods, and spend millions on research etc.
But an excellent start, and FMO3 should (in most cases) be straightforward base editing (not always).


Link (New Atlas) : Encouraging early results from first human CRISPR gene therapy trials

NIH Directors Blog post
"As groundbreaking as CRISPR/Cas9 has been for editing specific genes, the system has its limitations. The initial version is best suited for making a double-stranded break in DNA, followed by error-prone repair. The outcome is generally to knock out the target. That’s great if eliminating the target is the desired goal. But what if the goal is to fix a mutation by editing it back to the normal sequence?

The new prime editing system, which was described recently by NIH-funded researchers in the journal Nature, is revolutionary because it offers much greater control for making a wide range of precisely targeted edits to the DNA code, which consists of the four “letters” (actually chemical bases) A, C, G, and T "

CRISPR Therapeutics (done the 2 cases) : Press Release Link

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