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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


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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

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TMAU Petition world
TMAU UK end total:262
TMAU UK ends 23/01/20
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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

Monday, February 4, 2013

Urgent plea for UK sufferers to talk to media

BannerFans.com





Each person can be part of the solution. If only more sufferers would step up to be proactive, we would have answers more quickly; otherwise, we never will.
In an effort to raise awareness and to promote the Trinzyme Research Project in the UK, the MEBO Research directorship in the UK has worked closely with TMAU.org.uk to try to set media exposure. Two have responded offering to give us coverage. We are looking for volunteers who have not previously done an interview. If interested, please contact Karen James at karen.james@meboresearch.org. The following is information about one of the interviews in "Chat" posted by Karen James:


Community: Trimethylaminuria
Topic: Urgent plea for UK sufferer to talk to media

Post content: In view of the current progressions regarding TMAU research and awareness, I've been looking for UK media opportunities, and I've set up an interview with a woman's magazine in which I hope to: mention the forthcoming research grant from the Medical Research Council, encourage readers to donate to MEBO to raise further funds to continue that research, and promote the tmau film 'The Boy Who Smells Like Fish'.

The interview is for:

Dawn Murden
Feature Writer
Full House! Magazine
WC1V 6AA

WC1V 6AA

www.fullhousemagazine.co.uk

Tel: 0207 421 5433

Full House! Magazine
2ND FLOOR
Swan House
37-39 High Holborn
London
WC1V 6AA
SHE SAYS:

'I'm looking to feature you in the health section, it will be a 500 word article written in the first person following an interview. It will also have a fact box about the condition at the end. You'll need to provide a head and shoulder shot of yourself, and will have the article read back to your over the phone.

We do ask that all our stories are exclusive, i.e. haven't featured in other women's magazine. Local and national press is fine. To ensure this, we'd ask that you sign a contract. It's nothing scary, really just says you are okay to speak with, provide picture, etc.

We can include a website at the bottom of the article as well.'

Both myself and the one other UK sufferer who came forwards to be interviewed have already been featured in women's magazines which means we will be rejected. This is a recurring problem for our community. Please let me know if you or a fellow sufferer might be interested, or contact Dawn directly.
Emma at Caters News - e-mail address: emma@catersnews.com - is also willing to do an article with a new sufferer. It will be a shame to miss this opportunity as the timing of this publicity is so good.

Please help! If we all waited for someone else to do all the work, nothing would get done. Each person can be part of the solution. If only more sufferers would step up to be proactive, we would have answers more quickly;Otherwise, we never will.

María

María de la Torre
Founder and Executive Director

A Public Charity
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maria.delatorre@meboresearch.org
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