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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

Monday, July 25, 2011

On Capitol Hill for MEBO Research

On Thursday, June 23, 2011, Glenna Gonzalez, Director of Public Relations for MEBO Research, Inc., participated in the sixth annual Genetics Day on the Hill, sponsored by Genetic Alliance, the world’s leading nonprofit health advocacy group. In addition to coaching clients both internationally and nationally and speaking, Glenna advocates for MEBO in various settings, such as the event on Capitol Hill, which included a cross-section of the genetics community, including health professionals, researchers, and families.

Glenna had the opportunity to discuss with U.S. Congressional Staffers the issues that affect TMAU and Bromhidrosis sufferers.
Glenna, along with others, presented a collective voice to Congressional Staffers in an effort to support policy issue changes that impact genetics and health issues. In addition to discussing these issues, Glenna had the opportunity to discuss with U.S. Congressional Staffers the issues that affect TMAU and Bromhidrosis sufferers. She discussed the need for more research, the difficulties with maintaining gainful employment, and the emotional toll that these conditions have on the sufferers. Glenna discussed the work that MEBO Research performs as an advocacy group on behalf of those who suffer with metabolic body odor.

She discussed the need for more research, the difficulties with maintaining gainful employment, and the emotional toll that these conditions have on the sufferers.
The Congressional Staffers that Glenna met with were those of two Senators (VA), Jim Webb - (D) and Mark R. Warner - (D), and three House of Representatives, Republican Majority Leader Eric Cantor of VA, Gerald E. Connoly of VA - (D), and Representative James Moran - (D). She received a warm reception from each group of Congressional Staffers. In addition to discussing MEBO Research, she also joined the other members of her team in discussing issues selected by the Genetic Alliance. Topics chosen by the Genetic Alliance to be discussed with the Congressional Staffers included the following issues:
  1. The Title V Block Grant which is the Maternal and Child Health Program
  2. The National Center for Accelerating Translational Sciences, a new Center at NIH
  3. The protection of health and well-being through the CDC (Center for Disease Control) programs for birth defects, disabilities and public health.

We are most grateful to Glenna for representing MEBO Research on Capitol Hill and establishing relations with, and illustrating our plight to United States Congressional Staffers as well as other members of the Genetic Alliance. We are encouraged that she has paved the way for MEBO to now have the opportunity to work with the offices of the two Senators of the State of Virginia, Mark Warner and Jim Webb, and four House of Representatives, as we continue to pursue and initiate research, as well as in our efforts to raise awareness of the socioeconomic consequences of living with body odor and bromhidrosis. We are hopeful that this process paves the way for MEBO to more effectively carry out its Public Charity Mission to change the lives of sufferers as well as to change society's perception of what it means to live in a body that has a difficult to control malodor condition.

Genetic Alliance is the world’s leading nonprofit health advocacy organization. The organization promotes an environment of openness centered on the health of individuals, families, and communities. It was a true pleasure for Glenna to participate in this event as a representative for MEBO Research. Glenna looks forward to attending next year. Genetic Alliance has an extensive Resource Repository on their website where we can continue to educate ourselves about genetic issues and genetic testing.

PLEASE SIGN THE PETITION TO,

  • raise awareness of systemic body odor conditions in the medical community
  • governments to increase direct federal funding
  • make scientific research of various types of body odor diseases a high-priority; including but not limited to, Trimethylamimuria (TMAU)
  • efforts so that effective treatments and cures can be found.

PLEASE ASK YOUR FAMILY, FRIENDS, AND SUPPORTERS TO SIGN.
Anyone can select to either display or not display
his or her signature publicly on the petition.
PLEASE INDICATE YOUR COUNTRY OF RESIDENCE TO REPRESENT
A UNITED INTERNATIONAL COMMUNITY.

Thank you Glenna and all the signatories for your participation in finding a solution,

María


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)

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