Idea : TMAU Awareness week ... every 6 months

notion of a TMAU AWARENESS WEEK every 6 months.

Most disorders have a yearly awareness week. TMAU would do well to have such a week, as it is possibly the most 'unknown' documented 'rare' disorder (I don't think it is rare. Severe TMAU1 may be, but transient cases might be 1%+ imho).

But why wait yearly ?
If you live to 80 you will see only 80 'rare disease' days.
In many countries political parties now have twice yearly conferences. This will be due to party member pressure, feeling yearly too long a gap, and they are right. A year is a long time for causes.

So it would be great if the TMAU community could arrange :
TMAU AWARENESS WEEK (every 6 months)
(in my opinion)

What would it involve ?
An ad campaign (funded by specific crowdfund campaigns).
Maybe lobbying politicians or getting a patron politician involved.
Perhaps test labs releasing latest test result stats.
Maybe someday a conference (like the 1999, 2002 conferences which were meant to be bi-annual, 2001 moved due to 9/11)

An example of a disorder awareness week (UK Downs Syndrome)

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By sysbodyodor

campaign, fecal body odor, fund raising, ideas, join in, patient advocacy, raising awareness

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Campaign : get TMAU on the USA newborn screening programs

Quickfire TMAU Campaign :

Email the USA Newborn Screening Program recommendation committee.

Tell them to add TMAU.
They meet about 3 times a year.
They compile a suggested recommended list to each State.
Each State makes it own newborn screening list.

Possible problem :
For TMAU, the 'phenotype' (e.g. urine) test might be no use in newborns.
It may likely have to be the genetic test only.
But presently screen programs seem to be based on 'phenotype' (blood) tests.
But we can try.

est. chances of campaign success : 5%

Campaign :

Email the committee : Advisory Committee link

Probably for US residents/citizens only.
We can start campaigns in other countries.
For comments to be read to the committee, they ask name, address etc.

Email example (this can be copied / adapted)

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Please consider the following condition for the recommended list :
Trimethylaminuria
2 main types are documented : TMAU1 (genetic) and TMAU2 (all other forms, mostly overload)
In newborns, probably only the genetic type could be diagnosed.
In my view, perhaps the most common 'rare disorder' when you include all who report of smell incidents at some point (including outliers, mild cases etc)
FMO3 is a redox enzyme and has a wide range of substrates. Problems may not be limited to TMA, but to drug tolerances etc.
Whilst no obvious physical symptoms, the smell symptom has a great effect on mental health.
Sufferers tend to be under-employed, unemployed.
In my opinion, all forms of TMAU may affect many more than anticipated.
Adding it to the screen program would at least identify severe genetic cases.
In theory, there is a management protocol based on diet.
Identifying potential sufferers at birth could save much anguish later.

More information is available on request

Below are some informative TMAU links :
Gene Reviews : TMAU
Omim page : TMAU
Clinical Utility Card :TMAU
Genome.gov TMAU 

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By sysbodyodor

announcement, join in, patient advocacy, raising awareness

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Youtube : TMAU vlog by young female activist

A brave young USA lady has begun a vlog on Youtube to raise awareness of TMAU. The youtube username is StankGirlDiaries. So far 2 videos have been posted, which are valuable insights as to how TMAU  has a profound effect on the lives of sufferers. Thank you StankGirlDiaries, for the creative and articulate videos. You can subscribe to her channel to keep updated of new videos.

link : StankGirlDiaries Youtube channel

Below is the first video : Suffering in Silence: TMAU Body Fish Odor Rare Disease THE RAW TRUTH

Note : This is an embed of the original video. If the original is ever deleted, it automatically disappears here too.

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By sysbodyodor

patient advocacy, personal stories, raising awareness, videos

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