Admin Control Panel

New Post | Settings | Change Layout | Edit HTML | Edit posts | Sign Out

Labels

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
rareconnect.org TMAU

Popular Posts (last 30 days)

Upcoming get-togethers


Let us know if you want a meetup listed
Follow MeBOResearch on Twitter

Blog Archive

Denver TMAU Test Lab survey click here
click to Read more/less

USA survey for anyone who wants to improve Denver TMAU test

begun : Dec22
end : no ending for now

A trainee genetic counselor is working at the Denver TMAU test lab. Probably as part of her training. As a project she wishes feedback on any aspect of the Denver TMAU test and process. You can fill in the survey and/or email her (email address is in survey). It's meant for USA people, but perhaps others can give their view too (as we have so few opportunities).

quote from her rareconnect post

"Hello all! I wanted to make you aware of a research study being conducted to better understand the experience and needs of individuals with trimethylaminuria with a goal of being able to create improved patient and healthcare provider education materials. Any participation is completely voluntary and all responses remain confidential. Feel free to use the contact information within the link with any questions or share the survey with others with TMAU."

see this post for more details

https://www.meboblog.com/2023/01/denver-tmau-test-survey-tbc-who-it-is.html

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.

0 comments:

Post a Comment