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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

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or contact
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BO Sufferers Podcasts

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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
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NORD Member Organization
See RareConnect
rareconnect.org TMAU

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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, June 21, 2012

Conference Agenda for 3rd Annual MEBO Miami Beach Meetup 2012

I would like to thank everyone who has given donations to support the MEBO Research Alveolar Breath exploratory study to cover the cost of the room in which the tests will be administered for this study. Six (6) persons have purchased their tests for this event, and anyone interested can purchase it up to the last minute. The sample collection session will be held this Saturday, June 23rd, at the Dorchester South Beach Hotel after the Conference part of the Miami Beach Meetup. All donations, large and small, are very much appreciated and welcome at this time for this event.

MEBO Research


It is our goal to attempt to set up 2 conference calls throughout the whole of the conference, one using the local US conference phone line utilized for the bi-weekly calls, and the other a Skype Voice call. I cannot guarantee that the Skype call will be possible, but if you open an account to make domestic and international Skype calls in advance, you can purchase credits and take advantage of their very low long distance rates (usually cents per minute), and you can call the US conference phone line and listen in. More details and instructions will be posted in this blog tomorrow, the day before the conference.

USA : (712) 432 1620
access code : 391629#
NON USA : add 001 prefix


CONFERENCE AGENDA


The following is the agenda of the Conference to be held this Saturday, June 23rd at 12:00 noon and will last approximately 4 hours. The following days and weeks after the meetup, each presentation will be posted in this blog for everyone to see.

  1. PowerPoint Presentation by
    Elizabeth Shephard, PhD
    Professor of Molecular Biology
    Vice Dean Education, Biosciences
    Institute of Structural and Molecular Biology
    Division of Biosciences
    Darwin Building, UCL Genetics Institute
    University College London
    MEBO Research Scientific Advisor
    Member of the MEBO Institutional Review Board
    • Drug metabolism: If you have a mutation in a drug metabolizing enzyme that is needed to clear a particular drug, then there is very little detoxification and change in the drug, and the plasma concentration remains high. When taking the next dose, the same happens, thus the plasma concentration will increase over time without decreasing between each dose. This is potential for adverse effects, “adverse drug effects,” and in worst-case scenario, having too much drug, overdosing, and even death.
    • PHARMACOGENETICS (A field of genetics)--> PERSONALIZED MEDICINE:
      Pharmacogentics: The study of how our genes influence the way we handle a drug. Personalized medicine is, if we understand a person’s genetics, can we tailor their drug treatment to get them the best response to their particular drugs.

      Dr. Shephard gives an extensive list in her PowerPoint presentation of modern day medications that significantly challenge some metabolic pathways.
  2. PowerPoint Presentation by
    Dr. Colin HW, BDS
    UK MEBO Research Scientific Director
    Member of the MEBO Institutional Review Board
  3. Dimethylsufidemia: its significance in extra-oral blood borne halitosis:
    • Dimethylsulfide (DMS) appears to be a substrate of both CYP and FMO; renal and pulmonary excretion; DMS also demonstrated in cow milk after the cow’s dietary loading with either DMS or methionine
      1. DMS is a component of the odor of feces and flatus, along with H2S and methyl mercaptan
        (the same 3 VSC implicated as being the greatest contributors to the various forms of halitosis)
      2. these VSCs likely the result of intestinal bacterial activity
      3. of all the VSC gasses produced in the colon, >90% are absorbed by the gut lining rather than being emitted as flatus
      4. insufficiency of normal methionine pathway likely result in dimethylsulfidemia in addition to hypermethioninemia
  4. Presentation by Irene Gabashvili, PhD
    Founder of
    Aurametrix
    MEBO Research Scientific Director
    Member of the MEBO Institutional Review Board


    Irene'PowerPoint presentation explains how Aurametrics can serve sufferers of malodor conditions to identify their personal triggers in the diet, medications, hormones, environment, etc., and by doing so, how to best manage symptoms until a cure is discovered. http://www.meboresearch.org/Aurametrix%20presentation%20Miami_meetup_June_2012.pdf
  5. Statistic Report provided by:
    Nigel Manning
    Principal Clinical Scientist
    Department Clinical Chemistry
    Sheffield Children's Hospital
    MEBO Research Scientific Advisor



  6. Letter to the community from
    Adrian John McClay
    UK MEBO Assistant Executive Director
    Member of the Institutional Review Board



    Purpose for Members Center:

    1. Enables better understanding of how many people are potentially affected by malodor.
    2. Enables sufferers to participate in research.
    3. Includes information that has scientific credibility in order for members to be able to trust its validity.
    4. Could potentially demonstrate the size of the malodor community and the spectrum of possible conditions.
    5. To qualify members to participate in research.
    6. To develop a database of symptoms, tests, treatments and benefits of sufferers to identify patterns in the community.

    Functions of the Members Center:
    • Keep members up to date with the most recent information.
    • General advice and information on speaking with medical professionals.
    • Protocol information.
    • Community research.
    http://www.meboresearch.org/Members%20Center%20letter%20from%20AJ.pdf


  7. Letter to the community from
    Karen James
    MEBO UK Public Relations Director


    We should never allow ourselves to be dragged down by the scepticism of fellow sufferers regarding ‘raising awareness’ campaigns; thanks to the UK raising awareness campaigns last year, synchronised e-mailing to the Royal College of General Practitioners (RCGP) and follow-up letters and calls, I managed to publish an ‘odour article’ in ‘Innovait’, which is a journal for graduating doctors published by the RCGP. http://www.meboresearch.org/Karen%27s%20letter%20re%20InnovAiT%20RAISING%20AWARENESS%20CAMPAIGN.pdf


  8. PowerPoint Presentation by
    Glenna Gonzalez, MBA

    MEBO US Public Relations Director
    Life Coach

    Focus on living with body odor and/or breath malodor condition.
    http://www.meboresearch.org/Glennas%20Presentation%20The%20Right%20Perspective%20is%20Everything%21%20MEBO%20Miami%20Beach%20Meetup%202012.ppt

  9. Presentation by
    Cheryl Fields
    MEBO US Community Outreach Director
    Member of the MEBO Institutional Review Board


    Seeking Employment
    1. Stop trying to make "objective statements" happen
    2. Be concrete
    3. Cover letters are back
    4. Keywords are your friend
    5. Get creative with quick response codes
    6. Wow with visual résumés
    7. Give video a chance
    8. Social media are here to stay
    9. http://www.meboresearch.org/Cheryl%27s%20MIA%20BCH%20presentation%20Seeking%20Employment.pdf
It is so moving and awe inspiring to think that every single person involved in the creation of this meetup and the conference projects are volunteers who have given up their precious time for the betterment of all sufferers from around the world. On behalf of all the international community from all corners of the world, I wish to express my most profound appreciation to all the experts who have worked long hours to create these presentations for us. They serve not only to educate sufferers and experts, but to lead us into a new era filled with hope for testing, research, and discoveries that will change our lives and that of our offspring.
halitosis research María de la Torre Founder and Executive Director A Public Charity www.meboresearch.org maria.delatorre@meboresearch.org MEBO's Blog (English) El Blog de MEBO (español)

María

María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
www.brasil.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)
MEBO Brasil - Blog (Portuguese)



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