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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
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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

Wednesday, March 21, 2018

Accommodations & Agenda MEBO Conference & Meetup Savannah 2018

HOTEL ACCOMMODATIONS
MEBO ANNUAL CONFERENCE AGENDA
& MEETUP
Savannah, GA 2018

Let's get together at MEBO's Annual Meetup and Conference in beautiful Savannah, Georgia on the weekend of April 14th & 15th! I look forward to spending quality time with everyone. We'll have 2 whole days to talk about all the exciting and hopeful things happening in our community. We'll discuss the preliminary results of the pilot studies that has taken place recently that have given us some guidelines to consider in our efforts to control odor symptoms. We will also discuss the studies that are currently taking place, and we hope to have some news about the bigger studies that we are striving to get funding for. We'll also have a great opportunity to spend quality time together to feel free to express each person's concerns and to learn from each other how to best manage our condition. I always enjoy our meetups, and I think this year has a lot more "hope" in store for us as we look ahead into the future.

NEW CONFERENCE LOCATION April 14, 2018, 12:00 noon thru 5:00pm. Appetizers will be served. You can also bring your own food and/or drinks, if you like.


Courtyard Savannah Midtown
By Marriott
6703 Abercorn Street
Savannah, Ga 31405
912 354 7878

MEETUP PLACE (OTHER THAN CONFERENCE) LOCATION


For the Meetup time together other than the 5 hour conference, MEBO will have the King Suite at the Fairfield Inn & Suites, where we could meet in a more private setting in addition to the more open to the public area of the lobby.

Fairfield Inn & Suites
By Marriott
17027 Abercorn St
Savannah, Ga 31419
912 925-5050

The following hotels are within close proximity to the Fairfield Inn & Suites:
Click on icon for enlarged view
  1. Hampton Inn & Suites Savannah I-95 South Gateway
  2. Clarion Suites & Conference Center
  3. Travelodge Savannah Gateway
  4. Howard Johnson Express
  5. Quality Inn Savanna I-95
  6. La Quinta Inn Savannah I-95

If you haven't booked your hotel stay yet, you might want to shop around in the following sites for the best rates on whichever hotel you like that is near the Coastal Georgia Botanical Gardens, which is only 1 mile away from the Fairfield Inn & Suites. Nonetheless, when you decide on a hotel, it would probably be best to double check on a map to see how far the hotel of your choice is from the Fairfield Inn & Suites so that you can go back and forth to the meetup comfortably.
  1. TRIVAGO
  2. CHOICE HOTELS
  3. TRIP ADVISOR HOTELS NEAR BOTANICAL GARDENS

CONFERENCE AGENDA:

  1. TWO 10 MINUTE VIDEO PRESENTATIONS:
    • Video presentation by Irene Gabashvili, MEBO Scientific Director: Will include discussion on MEBO's 3 Clinical Trials and the current uBiome Gut Metabolomic Study currently active. Irene is accepting these test results from sufferers who wish to participate in the study. By doing so, she will gather data to better understand the meaning of the test results by comparing them to other sufferers and to a control group of non-sufferers. This study allows sufferers to take advantage of 10% MEBO discount off the $89 uBiome Gut Explorer test special, = $81 plus free shipping within the United States. Test also available internationally with shipping charges. For info, contact uBiome directly. If the test is ordered with a doctor's prescription, there is a good possibility that medical insurance policies will cover the test.
    • Video presentation from Danny Kunz regarding the research study currently active carried out by his Citizen Research Group in German on Gut Metabolomic Study. He is also accepting uBiome and any other test results sufferers may want to donate to this research for the same purpose.

    ***Being involved in these two research projects with the very low-cost opportunity to test your gut flora with uBiome provides personal benefits in that sufferers will get a test result of the composition of their own gut flora, while at the same time, be able to provide research data to 2 different researchers around the world who are volunteering their work to study the needs of our community. It's a win-win for everyone!

  2. Structured Group Discussion:
    • Handouts on Irene's and Danny's research results will be passed out and discussed.
    • This group session will be structured with the goal of allowing sufferers to talk about their concerns, ask their questions, and share their stories with the group. I find it most unfortunate that I simply don't have enough time to answer all the email questions about personal concerns from sufferers because I have to do all the MEBO work that is essential to accomplish the MEBO Mission. This weekend will be the time to have that talk, and not only one-on-one with me, but with everyone in the group.
  3. Dinner at restaurant nearby: When we get hungry, we can go for dinner together to a local restaurant (yet to be determined, click on icon above for restaurant options).
  4. Leisure visit to Historical Savannah together: For those who can stay through Sunday, we can organize a group sightseeing adventure to Historical Savannah on Sunday. If you are checking out of your hotel on Sunday, the hotel staff can stow your luggage until we return.

NOTE: It would be helpful if we had an idea of how many people will be attending the conference and how many will be going to dinner with the group, so that the proper arrangements could be made in advance. Please let me know if you are planning to attend one of both functions. Thank you. Looking forward to seeing you all!


María

María de la Torre
Founder and Executive Director

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



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A EURORDIS and NORD Member Organization

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