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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

Popular Posts (last 30 days)

Upcoming get-togethers


Let us know if you want a meetup listed

Blog Archive

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)

Monday, June 30, 2008

TMAU video news story on KomoTV : May 2008

Tammy Gobin, Rob Brown, and Cheryl Fields tell their TMAU stories, and as Rob points out, “Ignorance is the big problem here,” as it took him 47 years to get the right diagnosis. Dr. John Cashman, Director of the Human Biomolecular Research Institute in San Diego, says the Institute has been studying TMAU for 10 years, but getting medical funding for the disorder has been their biggest challenge. As Dr. Cashman clearly tells it, “We don’t have much funding for it, we’re on fumes.” They tell their stories in hopes of creating awareness and attracting research dollars, “We’re an orphaned disorder,” Tammy says, “People don’t want to spend money on us” Please see ‘The TMAU Research Fund’ post in this blog dated June 1, 2008, for details on how to make a donation, http://mpdela.blogspot.com/2008/06/tmau-research-fund.html

Video link : http://www.komotv.com/news/18956014.html?video=YHI&t=a

Full article: http://www.komotv.com/news/18956014.html

Points of interest :

" After spending $20,000 on medical bills with no help from medical insurance, Gobing found answers from Dr. John Cashman, Director of the Human Biomolecular Research Institute in San Diego.

"They (medical doctors) don't believe the syndrome," said Cashman. His San Diego lab tested Gobin positive for Trimethylaminuria. The Research Institute is one of the few facilities that test for Trimethylaminuria, or TMAu.

"Tammy is a very unusual case," said Cashman. Most patients are born with it and struggle their entire lives. Gobin developed TMAu in her early 30s and was in good health prior to the diagnosis. "

...

"I think in the future there is going to be nutritional supplements or other approaches that will be helpful," said Cashman, but he can't even guess when that might happen. "There's a lot of things we don't know about this gene and its protein and that's why we're studying it in the lab."

Cashman said the Insititute has been studying TMAu for 10 years, reviewing analytical data and DNA sequences, but despite those efforts getting medical funding for the disorder has been an uphill battle.

"We don't have much funding for it, we're on fumes," said Cashman.

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