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March20 podcast Dr Hazen
anti-TMA pill in a year or 2 ? (scroll 12 mins)

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MEBO - UBIOME study 2018



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

Started May 2018 - Ongoing

Current people sent kits : 100/100
3 kits per person


Participation info : LINK English

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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

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
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NORD Member Organization
See RareConnect 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

Wednesday, March 14, 2012

Raising Awareness with the U.S. Social Security Administration

Please call the
Commissioner Michael J Astrue of
Social Security Administration
or write to his office,

Send email to all four to ensure they have an opportunity to receive your emails. Too often we are told "...we have NOT received your e-mail(s)..."

Tell them the following:
(you can copy and paste or write your own version)

Persons who suffer from Trimethylaminuria (TMAU) experience a great deal of difficulty finding employment because of the odor this rare disorder creates. This makes it very difficult to properly provide for ourselves and our families, and produces a great deal of emotional distress resulting in serious mental health issues.

One of our TMAU community's active leader, Dr. Cheryl Fields' inability to schedule an interview or to be hired with the SSA office is a major concern for others who have TMAU who may also want to work in the Federal Government or with the Social Security Administration (SSA). We are all cognizant of how TMAU is a major obstacle in securing employment, especially in the very slow economy in which we currently live, wherein hundreds of unemployed apply for the same position. We will always be skipped over and someone who does not have body odor will get the job, no matter how qualified we may be. And worst of all, TMAU has not even been listed as a disability by SSA, leaving sufferers and their families with virtually no recourse!

A message from Dr. Cheryl Fields to those in our TMAU community who decide to become proactive in pursuing help by raising awareness:

Thank you so very much for standing up for me and for US. Together we can strive to get equal treatment. I just spoke with a lady today who had a job interview and of course because of the TMAU, she hurried out the door, without the interview even being conducted, she had applied for a Federal Government job. This is so sad.

We will NOT take this laying down. We have a right to work, or to apply for and/or receive SSA disability benefits, we have a right to be interviewed and to be hired for positions for which we are qualified for, etc.

Thank you gang. Let's flood the telephone lines and flood the e-mail boxes! We are STANDING UP in 2012 for our rights!

Very Sincerely,

Cheryl Fields, MBA, Ph.D. (ABD)/C
Dr. StillStanding
2535 S.E. Adams Street
Topeka, Kansas 66605-1232

PS: You can say that I asked for you all to write or call, you may use my contact information listed above.

410-965-3120, Social Security Administration Commissioner Astrue

PS: Pass this one to anyone who may benefit, including your family, friends, media contacts, etc., the more e-mails and calls they receive the better for all of us. YEAH! We can do this! Even if you are in an International area, please send an e-mail, we need your continued support and help. I am angry, upset, and disappointed about all of this! I am FIGHTING back!

Thanks Cheryl for leading our community toward positive and potentially powerful raising awareness campaign efforts.


María de la Torre
Founder and Executive Director

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