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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
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

Thursday, July 4, 2013

Message from Karen - New Campaign



Read about the Raising Awareness Campaign
(Scroll down on this link to see all posts)

spearheaded by Karen in the UK. It's amazing!
Let's continue to support Karen in her hard work for us all!


A MESSAGE FROM KAREN


Hi all,


Very soon, the research funded by the UK's Medical Research Council will get underway. We have an amazing team of scientists working on our behalf. They will be led by Dr Liz Shephard of University College London, who, as you know, has selflessly supported our community for many years.


Now that the research is finally about to take off, we need to ensure that it is able to be continued, and a therapeutic delivered to all sufferers, even after the MRC grant comes to an end. For this reason, we need to raise funds for the prolongation of this project immediately.


There is already a link on the MEBO Blog for people to make donations via Paypal to the 'MEBO For Trinzyme Project' directly. If you are wondering why the project is named Trinzyme, it is simple: Trinzyme is a company founded in the UK by a researcher dedicated to developing a TMAU therapeutic. This company will participate in the MRC funded research, and then, hopefully, continue it. However, more funding is needed to ensure that the momentum is not lost and that the project progresses. It is our community's hope that the research commencing now will continue evolving and that our scientists can delve further into investigating odour conditions.


At this point in time, we need to share ideas for fundraising. Not every suffer will be able to donate to the Mebo For Trinzyme Project, but maybe every sufferer can contribute by spreading the word about this project and by forwarding the link to potential donors.


If you would like to offer your ideas or skills, or become a part of the Mebo For Trinzyme Project fundraising committee, please let me know.



Best regards
Karen

BannerFans.com

MEBO UK PAYPAL FOR TRINZYME
********
MEBO US PAYPAL FOR TRINZYME
Your currency will be automatically converted to USD or GBP by PayPal.

Option: pay with your credit card instead of PayPal account by clicking on either Donate button above.



Karen is currently working with other sufferers to develop a well-organized fund-raising campaign to support this TMAU Therapeutic Research project headed by Dr. Elizabeth Shephard. If you are interested in being a part of this very important project, please contact Karen or me at maria.delatorre@meboresearch.org.

María


María de la Torre
Founder and Executive Director

  A Public Charity
www.meboresearch.org
www.mebo.com.br/ (em português)
MEBO's Blog (English)
El Blog de MEBO (español)


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A EURORDIS and NORD Member Organization 

4 comments:

Anonymous said...

My suggestion realize how lucky you are to have a diagnosis.......only people who HAVE tmau can advocate and fundraise.......call popular tv shows email them numerous times a day.....get on a show ask for donations......contact agencies that run the fundraisers for private charities.......its the rest of us without a diagnosis who not only need to fight for funding but also to be taken seriuosly.......you have a diagnosis, it is your leg to stand on..........use it!!!!!!!!!!

Jul 5, 2013, 11:43:00 AM
Jojo said...

This might need to be the next webinar to get the word out more effectively . Its also past time for people with no diagnosis to recognize that these studies Do actually affect how the medical community views All malodor conditions more seriously ,not only TMAU. Jimi is asking for some documentation that legitimizes the need and use of donations . His and others rightful skepticism can be addressed by Trinzyme and MEBO perhaps in a video or webinar prior to our email campaign . I love what you folks are doing for us ,tmau and no tmau . Much respect and praise for your tireless efforts . All the best .
Jojo

Jul 24, 2013, 12:49:00 AM
Anonymous said...

i did already realize those of us without diagnosis can help. i donated money to trinzyme out of my own pocket, and i stopped eating ALL foods and liquids for 2 weeks.....i consumed nothing but boost nutrition shakes and water, no morning coffee nothing, to see if diet would impact my odor condition....im just saying reaching the masses in the public and trying to raise money will unfortunatly fall on those of you with a diagnosis, until the people believe and respect those of us without a diagnosis.....i typed a letter to inform doctors in my state about the mebo websites and blog, and to get the tmau name out, and to advocate uncontrollable odor conditions do exist. i will begin sending them to every doctor in my state, i do not believe many people would donate money to me though....

Aug 19, 2013, 9:20:00 AM
Maria de la Torre said...

Thank you very much for your support for this cause and your donation. Anyone wishing to make a donation for this research project, can click on the PayPal button found on the right sidebar of the Front Page of this blog, under MEBO For Trinzyme Project. It is tax deductible in the US because MEBO is a Public Charity in this country. We will soon be a registered Charity in the UK as well.

Aug 19, 2013, 9:25:00 AM
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