Admin Control Panel

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

Subscribe to Blog

Enter your email address:

Delivered by FeedBurner

You will be sent a verification email

Subscribe in a reader

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)

Saturday, August 9, 2014

The RE(ACT) platform : A TMAU researcher will join soon and submit a research proposal

News about the RE(ACT) crowdfunding platform for rare disease researchers

Click to visit RE(ACT) TMAU group
Click for RE(ACT) TMAU group
It seems that a researcher with a long interest in TMAU (trimethylaminuria) research is very interested in making use of the RE(ACT) platform to put a TMAU research proposal forward for consideration. The RE(ACT) scientific committee will then consider the proposal which could take about 3-5 weeks, and then if approved it will be put on the RE(ACT) TMAU page for funding. The researcher is expected to join the RE(ACT) TMAU group and perhaps submit the proposal very soon, perhaps over this weekend. The researchers name will appear on this page when they join RE(ACT) :

RE(ACT) list of researchers for TMAU group 

RE(ACT) TMAU group

The researcher is not 'Olivier M', who is Dr Olivier Menzel, the founder of RE(ACT) and The BlackSwan Foundation.

Estimated cost of  research proposal
Our understanding is that  originally the provisional cost of the scaled back project was estimated at around $65 000, but it seems the project will now be a 'full scale' project possibly to take over 3 years and may be estimated to cost around $484 000. The researcher understands that since the project is an 'initial stage' project, that it may not be approved by the scientific committee.

About donations made to the RE(ACT) TMAU fund  
The RE(ACT) platform is a very new venture, but it seems there are 'contingency plans' in place when dealing with donations. From reading the site and some email inquiries it seems (to be confirmed, please check) :

RE(ACT) and BlackSwan Foundation is a Swiss charity
There's a 10% admin fee on any donation
Donations are via paypal
Donations can be made without signing up to RE(ACT)
Each disorder will have a general fund and a fund for any project
Anything in the general TMAU fund will be given to a TMAU project
If for example funding 'dries up' for a project, the donations may be put back into the TMAU general fund
Any money in the TMAU general fund will not end up in the RE(ACT) upkeep fund
Research proposals from worldwide are welcome

RE(ACT) is a very new and exciting initiative, but let's hope that probably the main concern is clarified by them as they learn over time, that all money donated to the TMAU group should stay within that group (currently the understanding is that this is the case).

New opportunity for TMAU research and for sufferers unlock money available in the community for our future
So we are very fortunate to learn of the new exciting platform that is RE(ACT), and also are fortunate that a TMAU researcher will be one of the first to submit a proposal to the platform on our behalf. Currently there is only one project on the whole RE(ACT) website, which was only approved in the last 2 weeks. Let's hope it is the first of many TMAU research projects (all research projects are welcome), with hopefully (as currently understood) all the donations staying in the TMAU group no matter what.

It would seem that RE(ACT) may become a main focus point for all rare disorders neglected by the health system.

0 comments:

Post a Comment