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)

TMAU Movie


THE BOY WHO
SMELLS LIKE FISH

Movie also called,
TREADING WATER
See trailer'
Winner of Golden Trailer Award 2013

Upcoming get-togethers


Let us know if you want a meetup listed

Employment Ideas


Please click to fill out questionnaire
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

Thursday, March 21, 2019

Upcoming Conference in Netherlands and Belgium April 2019

In collaboration with a small group of TMAU sufferers, the VKS has organized the first official national conference for people dealing with odor conditions, including TMAU. Two guest speakers will give a presentation, Professor Ron Wevers, PhD., expert in the field of genetically determined odor conditions, Radboud UMC "Malodour", and a dietician (To be announced).


DATE: Saturday, April 13, 2019
TIME: 2:00 pm to 5:00 pm
LOCATION: Accommodatie Domstad, Koningsbergerstraat 9, 3531AJ Utrecht
LANGUAGE: The conference will be in Dutch
REGISTRATION:
People can sign up for the conference by sending me an email at crosalia26@gmail.com.
Enrollment has to be as soon as possible, before the end of this month (March).

PROGRAM:

2:00 pm - 2:20 pm: Walk-in with coffee and tea
2:20 pm - 2:30 pm: Welcome by Crissan Rosalia, Health Psychologist, MSc., MEBO Mental Health Director
2:30 pm - 3:30 pm: Presentation on "Malodour" by Professor Dr. Ron Weber, Radboud University Medical Center
3:30 pm - 4:00 pm: Presentation by dietitian (to be announced)
4:00 pm. - 4:30 pm: Discussion / Exchange experiences

LANGUAGE: Dutch
People can sign up for the conference by sending me an email at c.rosalia26@gmail.com
Enrollment has to be as soon as possible, before the end of this month (March).
We are most grateful to Crissan Rosalia for reaching out to experts representing our community in hopes to establish a coordinated effort to find answers, solutions, and some day, a cure.

Some information on Dr. Wevers' work:


"Wevers : New gene suspect for METABOLIC MALODOR : SELENBP1"

Pubmed : SELENBP1 abstract paper



Dr Wevers webpage

Media links on the story :
Gizmodo
Medical Xpress
Science Daily
Genengnews
UCLA press release


María
María de la Torre
Founder and Executive Director


SUPPORT THE MEBO MISSION: Click Amazon button at right sidebar of this blog when shopping online for the holidays
at no extra cost to you.
MEBO gets small commission from Amazon.

get New Posts by EMAIL : Enter your email address :


A EURORDIS and NORD Member Organization

posted by Maria de la Torre, Founder and Executive Director, MEBO Research on 3/21/2019
1 comments Post comment
[Facebook Share]
Labels: , ,

Other posts for these labels

1 comments:

Anonymous said...

Hi,

Is it possible to live stream for those of us who can't attend?

Thanks

Apr 4, 2019, 9:45:00 PM
Post a Comment
Subscribe to: Post Comments (Atom)