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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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Blog Archive

UK residents survey : Prof Shephard/MEBO (until 31/1/21) click to visit survey
click to Read more/less

Prof Elizabeth Shephard is conducting a TMAU fact-finding survey for UK RESIDENTS. She plans to use it to raise awareness with decision-makers, such as perhaps MPs. It closes 31 Jan 21.

who is the survey intended for ?
UK residents who identify with TMAU

Living with TMAU study

We invite you to participate in a research project entitled ‘Living with TMAU’.

click to visit survey

survey full url :
https://meboresearch.co.uk/index.php/living-with-tmau-lwtmau-study/

Participation in the project will involve completion of a short questionnaire, which aims to capture the experiences of those living with the condition. There are two questionnaires.

For individuals with TMAU over the age of 18

For a parent or guardian of a child with TMAU.

The results from the questionnaires will be compiled to produce a report that will be available for you to use, for example, to lobby your MP. The findings will be used to reach out to policy makers in the UK to have TMAU recognised as an invisible disability and to make people aware of what it is like to live with the disorder. The report will be made available on the MEBO, UK website.

To complete either questionnaire you must be over 18 and resident in the UK. The questionnaire responses are anonymous and no personal identifiers will be collected.

The questionnaire closes 11:59 pm (GMT) Sunday 31st January 2021.

MEBO Metabolic Malodor Survey (international) for Dr Hazen click here
click to Read more/less

survey for ANYONE who identifies with METABOLIC MALODOR

begun : Oct20
end : no ending for now

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

This is a GOOGLE FORMS survey

short url for survey :
https://forms.gle/vem2TjepKobYZPBu8

current participants : 113 (update 18dec20)

Sunday, March 3, 2013

World Premier of The Boy Who Smells Like Fish






The amazing Canadian film - The Boy Who Smells Like Fish - had its world premiere last night to a sold out crowd at The Miami International Film Festival -
sponsored by The Miami Downtown Development Authority
Schwatz Media Strategies 3MAR13


In The Boy Who Smells Like Fish, the talented young actor, Douglas Smith skillfully portrays the consequences of constant social ostracism due to his rare disease, trimethylaminuria – the modern day "leprosy." As Mica’s therapist, Carrie Anne Moss brings elegance and sensitivity to her role. Through her, the screenwriters, Javier Gullón and Analeine Cal y Mayor depict the boy’s deep psychological wounds from early childhood to adulthood, and his very poor future prospect in relationships and in career opportunities.
The audience broke out in a great applause [at MEBO's Mission], and even after I sat back down, they kept on clapping, so I had to stand up again.
Zoe Kravitz gives depth to her character, Laura, who is a breath of fresh air with her upbeat and loving way in spite of her own personal challenges. Ariadna Gil, Mica’s mother expertly personifies the torment mothers of children with rare diseases experience, while Don McKellar depicts a father who simply can’t cope with his son’s condition.

In the end, the screenwriter’s use of magic realism as the conclusion to this unsolvable metabolic disorder personifies a defiant spirit that persists without surrender. It attempts to break through the natural barrier inherent in a rare disease and screams, "anything is possible; we just have to believe and reach for it." This film tells the story of a doomed life with a delightful dose of artistic stimulation, and invites the viewer on a journey to break through the obvious limits to follow a dream of what could be. Gonzalo Vega's captivating style is a perfect vessel to draw the audience into this magic realism. Bravo!


After the film had finished, the whole cast, director, and producers went up to the stage for a Q & A session with the audience. When the Director, Analeine was asked the first question, she said that she first wanted to introduce me, asked me to stand up (I was in the audience), and told the audience that I was the founder of MEBO Research, a public charity whose mission is to promote research into trimethylaminuria. The audience broke out in a great applause, and even after I sat back down, they kept on clapping, so I had to stand up again. I never thought TMAU would get such a powerful applause from non-sufferers, so I know the film had an impact and carried the message well.

María

María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
www.brasil.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
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