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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
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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, September 19, 2018

MEBO chat with NIH ORDR office :details to follow

Details will follow soon of :
MEBO web conference with NIH ORDR dept team.
Tue 18th Sept

Info given after the chat :

Thank you for speaking with us earlier today. In follow-up to our conversation, here are links to some of the programs and resources we spoke about.

RDCRN (Rare Disease Clinical Research Network) Funding Opportunity Announcement - https://grants.nih.gov/grants/guide/rfa-files/RFA-TR-18-020.html

Toolkit for Patient Focused Therapy Development - https://rarediseases.info.nih.gov/toolkit

R13 Grants (Support for Conferences and Scientific Meetings) - https://grants.nih.gov/grants/funding/r13/index.htm

All of Us Research Program - https://allofus.nih.gov/

Registries Program (RaDaR): https://rarediseases.info.nih.gov/radar

Additional registry information outside of NIH:

NORD (National Organization Rare Disease) - https://rarediseases.org/iamrare-registry-program/
Sanford CoRDS (Coordination of Rare Diseases at Sanford) - http://www.sanfordresearch.org/specialprograms/cords/

Additional info given :

Thank you for the time to talk to us about TMAU yesterday.

In terms of drug development for TMAU, given the available knowledge of the TMA metabolism, it seems possible that small molecules could be developed to modulate TMA levels.

The attached PDF entitled TMA inhibitor is an example that I found.

You may have seen this, but It turns out that the same approach has implications for treating heart disease, so there is already drug development ongoing

https://newsroom.clevelandclinic.org/2018/08/06/potential-new-class-of-drugs-developed-at-cleveland-clinic-may-reduce-cardiovascular-risk-by-targeting-gut-microbes/

There may be other labs or companies working in the same area, so this is not intended to be a complete list.

Along the same lines, another possible therapeutic strategy that is worth considering would be breaking down or trapping TMA.

While gene therapy to the liver is theoretically possible, it seems unlikely at the moment given the serious risks of gene therapy, and since TMAU is not a life threatening disease.

An alternative that could be considered is using genetically modified microorganisms in the gut to do the same things.

These links discuss some examples of that strategy.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4049937/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4666514/

Here are two companies working in this area that I know of;
there may well be more

https://www.synlogictx.com/
https://aobiome.com/

As I mentioned yesterday, this information is not an endorsement of any company; just some ideas for you to consider and discuss with your scientific and medical advisors.

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