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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

Saturday, January 1, 2011

Where we've been and where we're going


What has MEBO's volunteer staff

been up to in 2010?


The strong outpour of support these past few years by so many sufferers and experts in our international community has been most inspiring. Even though no one in MEBO’s staff or other volunteers have ever received compensation of any kind (monetary or otherwise) from MEBO for the countless hours invested, much has been accomplished. We are indeed a community united by a common goal – to find a cure for all types of unusual and uncontrollable body odor throughout the world, and we’ve only just begun.

As the year 2010 comes to an end,
we can reminisce on "days gone by."
A special thanks go to,

  1. Our expert overseeing MEBO’s activities, Dr. Irene Gabashvili,

  2. Our Technical Consultant for writing the automated MEBO’S TMAU Test Program Requisition Form, setting up a platform for future surveys and reports, and who took the initiative to design and provide Raising Awareness Flyers for all sufferers from around the world to print and distribute in doctors’ offices, school and work bulletin boards, libraries, etc. , as recommended by other pro-active sufferers. He has also offered to do additional projects for our community next year, including a MEBO Store in our new Charity website,

  3. MEBO’s Director of Public Relations, Glenna Gonzalez who has made the arrangements for our upcoming Washington DC Meetup in April 2011 and is currently writing a Raising Awareness paper to be submitted to journals for publication, which Glenna will share with us in a presentation at the Washington DC Meetup. Along with a few other members of our community, Glenna is a strong supporter and participant of our bi-weekly conference call in the US,

  4. The three Spanish translator volunteers who have helped translate many posts from this English blog to our Spanish Blog and MEBO’s website, including a letter to doctors and Information on TMAU written by the Principal Clinical Scientist who performs most TMAU tests in the UK, Nigel Manning, have been very instrumental in uniting the Spanish community throughout the world. These volunteers are also working at raising awareness in the medical community and promote TMAU testing and research in their respective countries (Spain and Venezuela),

  5. MEBO’s Accountant in England, who has offered her pro-bono services for the year 2009 and future years to come,

  6. The College of Law at Florida International University, whose Legal Clinic offered pro-bono services to register MEBO as a non-profit organization in the United States, and produced all the required documentation for IRS Form 1023, to apply for 501(c)3 Charity, which was submitted on December 16, 2010.

  7. The experts in the US and the UK, including but not limited Nigel Manning, Dr. John Cashman, a leading expert in flavin mono-oxygenase enzyme genetics at the Human Biomolecular Research Institute (HBRI) in San Diego, California, in addition to other experts who prefer to remain anonymous, have written much appreciated professional letters, papers, and interviews for our blog; recognition is also given to a lab that made a donation of TMA-rich samples to support our TMAU Service Dog Program.

  8. Liz Norris, Founder of Pawsibilities Unleashed, Pet Therapy of Kentucky, Inc., a 501(c)3 non-profit organization, who donated a TMAU Service Dog, Dray, and trained his volunteer trainer and caregiver, Charley.

  9. All the volunteers who have participated in MEBO’s Raising Awareness Campaign by telling their stories in home-made videos or writing their stories.

  10. All sufferers from around the world who participated in special TV programs or other recorded programs to promote raising social and medical awareness of body odor conditions, and who organized meetups around the world, including the Thames Festival Meetup.


Below is a list of some of the activities MEBO Research has been involved in during the year 2010, and our goals for the year 2011:

Year 2010’s ongoing efforts
to unite experts and sufferers
to promote research:

  1. Set up and initiated MEBO’s International Test Program with Eliapharma Services, Inc, (a for profit) research lab in Canada that has offered us low rates for TMAU urine testing. We have already begun testing using domestic shipping within Canada, but are still working with FedEx for a Country-to-Country rate system that best fits our needs, as well as to ensure that the various Customs’ documentation requirements of most countries are met.

  2. MEBO's first annual Meetup held at Nashville, with a written presentation paper from Nigel Manning, “TMAU – diagnostic testing at Sheffield Children’s Hospital” specifically for this meetup.

  3. TMAU Service Dog Program with Pawsibilities Unleashed.

  4. MEBO Research, Inc. was incorporated in the State of Florida on April 21, 2010 as a Not for Profit Organization.

  5. On December 16, 2010, IRS received the 501(c)3 application Form 1023 for MEBO Research to obtain Charity status.

  6. Interview with Dr. John Cashman of HBRI in San Diego

  7. Nigel’s letter to medical doctors explaining TMAU testing and paper on TMAU to raise awareness in the medical community. (English) (translated into Spanish).

  8. Sufferer strong participation in MEBO’s Raising awareness Campaign with Raising Awareness Flyers, writing articles for journals, and publishing videos in our English and Spanish blogs made by sufferers from many parts of the world.

  9. Promote the NORD Fund to obtain research funds from the US National Institutes of Health for TMAU research, which on September 2009 had only $6,350, and by December 2010 has $28,486.00.


Year 2011 future goals
to unite experts and sufferers
to promote research:

  1. MEBO-Eliapharma begins testing the approximately 50 people currently on waitlist, and expand to the rest of the Western Hemisphere

  2. Support Eliapharma's efforts in pursuing research in the grant seeking process targeting the Canadian National Institutes of Health, local universities, and private pharmaceultical companies.

  3. MEBO Test Program is proactively working with renown experts on setting up its TMAU Test Program with a lab located in the Eastern Hemisphere in which a doctor's orders would not be required and which would support future research - similar to what is being set up in the Western Hemisphere with Eliapharma Services, Inc.

  4. MEBO's Second Annual Meetup in Washington DC on April 9th and 10th.

  5. With Charity status, pursue grants and funding to further develop the TMAU Service Dog Program with Pawsibilities Unleashed.

  6. Open a MEBO Store to raise funds

  7. Continue with our Raising Awareness Campaign by writing to the various School Boards in the US and UK recommending guidelines to school faculty and administration on how they can assist and support students who presents with body odor - referring them to the letter to doctors and TMAU write up written for us by Nigel Manning noted above, and to the online National Institutes of Health pages on TMAU, and referring the students to this blog for testing options and support group forums. Our Spanish community volunteers, and members of other languages forums, such as the Italian and Polish communities, who have been in communication with MEBO on a regular basis can help us spread this same information to their respective countries as well.

  8. Support the NORD Fund in pursuing research with the US National Institutes of Health grants-seeking process.

  9. Expand communications with experts and sufferers from all parts of the world by establishing relations with members of all body odor forums and experts from as many countries as possible.

María de la Torre
President and Executive Director

www.meboresearch.org
maria.delatorre@meboresearch.org



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