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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

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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

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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)

Tuesday, September 10, 2013

Volunteers needed for interview with Rare Genomics Institute

This is a a comment made by a team member of Rare Genomics Institute, Divya, on a thread in RareConnect on August 12th, but I was not able to reply until now. To find the original comment, you first need to go to the Trimethylaminuria (TMAU) Community site, and then go to the post "Just A Guy who suffers from TMAU." My reply to Divya’s original post follows her comment below.


ORIGINAL POST:


Hello!

My name is Divya, and I am part of a team currently participating in an internship with the Rare Genomics Institute. The Rare Genomics Institute is a not-for-profit organization that supports families who are affected by rare diseases. As the majority of rare diseases are genetic in nature, the Rare Genomics Institute uses donations and grants to give patients access to cutting-edge technologies and leading medical experts by funding full genome sequencing for patients. By analyzing the results, experts hope to find the cause of the disorder. From there, treatments and therapies are developed in an attempt to cure the disease.

To learn more about the Rare Genomics Institute and read some of their patients’ stories, please visit: http://www.raregenomics.org/.
As a part of our internship, we would like to interview individuals affected by a rare disease (patients, family members, etc.). The purpose of the interview will be to discuss the impact of rare diseases and the difficulties of coping with them. This will help the Rare Genomics Institute better understand patients’ struggles and allow them to determine how best to care for their patients.

If you, or any other individual diagnosed with this disease would like to share your story with us in an interview- please do not hesitate to contact us at rgi.internship@gmail.com.


Best,
Divya (anon049eb387)


MEBO'S REPLY TO DIVYA:

Hello Divya (anon049eb387),

Thank you for writing about Rare Genomics Institute and inviting us to tell our story. I would love to do all possible to assist your internship program to interview individuals affected by a rare disease. I wonder whether you mean that you are looking for someone already diagnosed with the genetic type of TMAU or someone with life-disruptive odor symptoms for whom no test has yet identified the cause and no diagnosis has been given.

Some of the MEBO Directors and I have had the privilege of meeting Dr. Jimmy Lin, MD, Founder of Rare Genomics Institute, on a conference call. Dr. Lin is also a member of the MEBO Institutional Review Board (IRB). He is indeed inspirational, and MEBO would do all possible to assist Rare Genomics in whichever way we can. Please don't hesitate to contact 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)




A EURORDIS and NORD Member Organization 

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