Admin Control Panel

New Post | Settings | Change Layout | Edit HTML | Edit posts | Sign Out

Labels

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

Monday, April 4, 2011

Washington DC Meetup 2011 National Cherry Blossom Festival



Thankfully, the cold has not destroyed the Cherry Blossoms, and we'll have the opportunity to enjoy them at our meetup this weekend.

Hope to see as many people at the meetup !

See here for 5 day weather forecast



I am so looking forward to our Washington DC Meetup this weekend, and we only have a few days before we begin our journey. I am looking forward to meet with everyone and would love to get the opportunity to speak with each person individually at some point of our meetup.

I would like to announce that Dr. Elizabeth A Shephard, a renowned expert in FMO3 and TMAU in London, who has written many papers on these topics has been kind enough to give us a powerpoint presentation, giving us a very easy to understand explanation of the genetics of TMAU. In addition, Dr. John Cashman, who is always telling us that he is happy to help, has given us 5 different documents on this same topic, which I must confess are a little advanced for my lack of knowledge of genetics. So, Dr. Shephard's powerpoint presentation is a great introduction that would hopefully give us some background preparation to better understand some of what is said on the papers Dr. Cashman has given us for our meetup. These past three years, since we began the MEBO Blog, we have published many posts on papers written by Drs. Shephards and Cashman; and they both have always been available to answer our questions and to help us in whichever way they can. Our heart-felt gratitude will always be with them.


In addition to these two very important contributions to the conference part of our meetup on Saturday, April 9th, that begins at 11:00a.m./EDT, we will have a presentation by Dr. Cheryl Fields on Social Security Disability benefits in the US and the rights of employees who suffer from uncontrollable body odor conditions, and another presentation on Bromhidrosis by Glenna and Gloria. Neither Drs. Shephard and Cashmen, or Cheryl and Gloria can personally attend the meetup, so as result, we are planning on setting up a conference call for Cheryl and Gloria to call in. Since we're working on setting up the conference call, we are going to try to make it an international conference call. All the particulars have not been arranged yet to set this type of call, so please stay tuned for updates.

Nonetheless, after the meetup presentations are done, we will write posts and present these documents in MEBO's blog.

FOR THOSE ATTENDING THE MEETUP


Embassy Suites Dulles Airport
13341 Woodland Park Drive
Herndon, Virginia
USA 20171
Tel: +1-703-464-0200
Fax: +1-703-464-0210

To Book your Suite, click here

As you arrive at the hotel or wherever you are staying in the Washington area,

please call me at 786 228-6880

and I will let you know where we are. This is MEBO's phone number in the US that goes directly to my cell phone. Most of us will be arriving on Friday, April 8th from all over the country, and hope to all be present in time for the Manager's Reception where we can share a special bonding moment from 5:30pm to 7:30pm as we sip on our complimentary alcoholic and nonalcoholic complimentary beverages before we go out to dinner as a group.

Breakfast will be served Saturday morning until 10:30a.m., and our meetup will begin at 11:00a.m. It saddens me to say that the persons from London who we hoped would be able to attend, will not be doing so this year; but I do hope they and others from all over the world are able to call in on the conference call. As with our bi-weekly conference calls that we hold in the United States, any one is more than welcome to just call in to listen without ever speaking.

Hope to feel the unity of those present at the meetup as well as all sufferers from around the world that will join us from afar, as we also feel very close to all the experts who have given of their time and their professional works to support us.

María

María de la Torre
President and Executive Director



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

0 comments:

Post a Comment