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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

Monday, February 3, 2020

Young Florida lady talks TMAU on her local TV news

Dec 2019 :
Young lady from Florida talks about having Trimethylaminuria (TMAU) on the local news.

Alyssa was in kindergarten in North Okaloosa County, when her mom told her she had a rare disease commonly called "fish odor syndrome." Sometimes the smell is not noticeable at all. Other times, such as when she exercises, it can be very strong ...

... Some people with Trimethylaminuria fight depression and thoughts of suicide. Alyssa is determined to live on her terms. As she heads into her mid-teens, when dating could come to the forefront, she says she's not afraid. Alyssa explained, "It's like if they don't want to be with me or be around me because of it, then they don't deserve me. And I don't care."
Link to transcript and video : weartv.com

15 year old Alyssa talks to her local news station about having TMAU.
The community thank you Alyssa, as it is a very taboo subject.
Her attitude is fantastic.
Note : the item was on the news on 25 Dec 2019

Possible actions :
Send a link to the NIH Director Francis Collins.
Ask to get on local news ?
Ad campaign ?
Other ideas ?

Comment :
Its been a long time since a TMAU item was on TV news or TV at all. Maybe since people now take to youtube, which is there for everyone always.
It's not clear how much impact such an item has on awareness, but everything is welcome !
Probably the big impacts would be high-audience shows, popular youtube channels, or an ad campaign ? 

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A EURORDIS and NORD Member Organization

2 comments:

Pdag said...

I hope we can be friends alyssa i am from canada i am also a tmau patient....i dont have mich friends because of my tmau....

Feb 3, 2020, 10:57:00 PM
Unknown said...

I am pretty sure I have TMUH but nobody test here how can I get tested? This has ruined my life...need help!!!

Feb 4, 2020, 4:07:00 AM
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