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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

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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)

Thursday, December 1, 2016

Get Involved - RARE DISEASE DAY 2017

RARE DISEASE DAY 2017

MEBO Research has participated every year since 2012 in the Rare Disease Day event with significant volunteer involvement from our community. Many sufferers wrote their story and posted them in the 'Tell Your Story' Page of the event website, others have done videos, which can be done in any language, i.e., the video below that Cheryl Fields, PhD., MEBO's Community Outreach Director, U.S. In addition, MEBO's Public Relations Director, Karen James, has also spearheaded an organized mass email to key leaders in the UK Medical community.
I would love for sufferers to come forward again this year to brainstorm about projects they would like to do for the 2017 Rare Disease Day event. Each sufferer is encouraged to be creative and spearhead his or her own ideas to put them into action on this special day.

NORD and EURORDIS have structured a professional platform around the world, and have provided us with great tools to do our presentation, so that charities and foundations can present their case under their "umbrella" of support, which allows for government officials and experts in the medical field to take notice and to take us seriously.
This year, perhaps we can do a multilingual raising awareness campaign targeting leaders of the scientific and medical fields in the US, UK, and many more countries who have never heard of TMAU and other similar body and/or breath odor conditions. The beauty of MEBO being an Organization Member of the National Organization for Rare Disorders (NORD) and EURORDIS is that once a year, on Rare Disease Day, NORD and EURORDIS have structured a professional platform around the world, and have provided us with great tools to do our presentation, so that charities and foundations can present their case under their "umbrella" of support, which allows for government officials and experts in the medical field to take notice and to take us seriously.





This is our best opportunity around the world to present our case! MEBO will support any volunteers in their strategy to develop a presentation and to effectively present them either on the 'Tell Your Story' Page of the Rare Disease Day site, i.e., videos, photos, poetry or biography, or to help voluteers physically set up a table at the event of their choice where NORD and EURORDIS will be hold anywhere around the world. Volunteers are invited to represent MEBO in the 2017 Rare Disease Day.

In Cheryl's case in 2012, MEBO raised $200 for her to hire a professional photographer to record her presentation. MEBO arranged for her to go to Washington DC, to the Office of Rare Diseases Research, National Institutes of Health/NCATS, as a table exhibitor for MEBO Research at the NIH Clinical Center. On that table exhibit, Cheryl ran the video she created (below), which received a great deal of attention to those who were there for the event. It was a great raising awareness tool. It was Cheryl's raising awareness efforts that got us in contact with Robert Pleticha, who then invited MEBO and two other TMAU organizations to launch a Trimethylaminuria Community in RareConnect for our international community, which is now available in 8 different languages. This is such a great network for the MEBO Community. However, it is as good as the degree of creative thinking, initiative, and action taken by sufferers like you and me. We are no different from each other, just common sufferers of a condition we want to find a cure for.

Sufferers who are artists or singers around the world, you can draw a painting, write a song, write a poem, or use whatever medium you find best helps you express yourself to raise awareness.
In addition, MEBO's Public Relations Director in the UK, Karen James, also initiated that same year a raising awareness mass email campaign directed at UK medical community contacts to be held on Rare Disease Day, February 29th 2011. Our community was so active in this email campaign that the UK medical community officials got to know us very well, and we have established points of contact that we can call upon whenever we need to discuss important issues. These contact have worked with MEBO to create 10 important DUETs questions and concerns that can be used in future formal research projects. As a result of this very diligent determination on her part, Karen has accomplished, in only a year's time, not only to work with UK DUETs, NHS Evidence, National Institute for Health and Clinical Excellence to publish 10 body odor related uncertainties/questions, currently found in the Library of NHS UK database, about the effects of treatment for TMAU, but now she has her own article published in InnovAiT,




My body produces an offensively pungent chemical
Karen James
InnovAiT 2012; doi: 10.1093/innovait/ins093>

Great accomplishments happen when volunteers come forward, brainstorm great ideas for this event and spearhead them in motion. Sufferers who are artists or singers around the world, you can draw a painting, write a song, write a poem, or use whatever medium you find best helps you express yourself to raise awareness. If you need MEBO to help you fund raise for a small amount of money to accomplish this, please let me know.

María


María de la Torre

Founder and Executive Director


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