UK Campaign : Template letter to Politicians

UK Campaign to get Politicians involved with TMAU.

Here is an idea of a campaign that people can do if they want. Involves writing to your/a MP or member of House of Lords. A main aim would be to get a TMAU All Party Parliamentary Group (chance : 5%).

When writing to a politician, the rules are :
MP : MP's may say they can only reply to constituents.
But the website says you can contact any : Link .
1 strategy is : contact your own MP first.

House of Lords : you can contact anyone.

Some random ideas of aims for the politician :
To be a TMAU 'patron'.
To form/join a TMAU All Party Parliamentary Group.
To do general things that may promote awareness/research/ease of testing.

Of course, people can write their own emails.
Find your MP : link

Example email :
Can be altered or totally changed etc.
May be of inspiration for other countries.

Example Letter (can be used/altered if you wish)

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Dear

re Trimethylaminuria (TMAU)

TMAU is the only systemic/metabolic body/breath malodor currently documented.

While the severe form is rare, the 'mild' transient type could be fairly common. The 2 common polymorphs, about 10% Caucasians are estimated to carry. This does not mean 10% have 'smell issues, but among this group a fair amount may be 'prone' to transient smells.
It also appears to be across both genders and all ethnicities.

TMAU origins (1970)
TMAU was a 'guess' at a volatile to test for a 'fishy smell' back in 1970. Since then no other smelly volatile has been tested. Most TMAU people do not identify with a fishy smell, but rather a broad spectrum of 'bowel' smells.

While many sufferers don't think TMA alone is the sole volatile, or even a main player, it should be a good biomarker of FMO3 function, and for now is the only 'volatile' to rally round the concept of 'systemic body odor'.
So for now we will focus our aims on TMAU.

FMO3
FMO3 is the enzyme regarded as meant to neutralize TMA. It is an oxidizing enzyme that neutralizes/activates many smelly volatiles/compounds in humans.
You could say TMA oxidation is a good biomarker of FMO3 function.

TMAU ignorance
Probably about 20 researchers have ever taken an interest in TMAU. None are actively interested for maybe 10 years or more.
There were 2 conferences set up in 1999 and 2002, but these fizzled out.
Probably only a handful of health professionals know of TMAU.
About 99.999% will not.
For GPs it may be higher.

A consensus among the group is :
The understanding of TMAU is very basic and the 'treatment' does not work and may be bad for your health (choline being important for liver function).
Currently nothing is being done research-wise.

A few points about TMAU
1. the person usually cannot smell themselves.
2. most cases would seem to be transient.
3. Unlike probably all other 'rare disorders', the person will start seeking answers as an adult or teen. It is not a Dr-led diagnosis.
4. The group are pretty disorganised (partly to do with shame) and could use help to get organised.

UK Political Help
Here is a list of ways a UK politician may help the TMAU cause :
In reply, you may use this list with your answer if you want.

1. Become a TMAU UK group 'Patron' (or similar title. Could be from title-only to some extra duties).

2. Form/Join a TMAU All Party Parliamentary Group.
This could perhaps be for a few meetings only, or a trial basis. Mainly to have a thorough look at the subject in the House.

3. Attend a Charles Dent UCL 'TMAU Group'  quarterly meeting.
There have been 2 meetings so far (perhaps a new NHS law ?). Since it's near the House, perhaps you could attend. Or attend one at a regional metabolic unit (so far only Birrmingham known).

4. Help in finding a broker for the TMAU test to subvert the 'NHS professional-only' testing law.
HIV testing is now available via direct-testing. Since TMAU is an 'adult' disorder, and GPs won't know of it, people want to test direct and self-pay. If you could help us in source an agreed method of testing this would take away our greatest anxiety.

5. Ask a TMAU question in the House

6. Help with publicity, advice etc.

7. Help us organise.

Or any other ideas you care to mention.

There are 2 things regarding potential treatment :
1. What could be done now.
Possibly a lot could.
e.g. using enzymes to metabolize TMA in the gut. TMA can be put down the 'methane route' by enzymes in certain microbes. Also an 'FMO3 pill' has been suggested, as most of the load may be in the gut.

2. What could be done in the future (gene therapy etc)

So probably things could be done now, which are not of interest to researchers, pharma companies etc.

Thank you

Some links about TMAU
https://youtu.be/7IPV72B4-3c
https://youtu.be/qrW_QYk6zRI
https://youtu.be/U8RriLVkXdw (severe case)
https://youtu.be/FnETAQHepX8
https://youtu.be/SN-7KWLqjMw   
https://youtu.be/4Iqb42_pVk0

http://middleeast.thelancet.com/journals/lancet/article/PIIS0140-6736(05)77067-7/fulltext
https://www.ncbi.nlm.nih.gov/books/NBK1103/

TMAU testing among a random group from Imperial College.
https://www.ncbi.nlm.nih.gov/pubmed/8893042
Back then, <80% was the '+ve' ref. range. This is now  <94% for '+ve'.
This would make 3.8% of this 421 now 'TMAU +ve'.
  

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By sysbodyodor

announcement, campaign, community, important, join in, raising awareness

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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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Youtube : UK lady with TMAU, workmates smell her

A professional UK video production (Barcroft TV).
Only lasts 6 minutes.
UK Lady with diagnosed TMAU.
Her workmates can smell her.
Barcroft TV have done TMAU videos before.

Full TMAU story in Daily Mail

This video was just published on the Barcroft TV youtube channel. My impression was that Barcroft usually did productions for TV and later put them on their youtube, but this one is only 6 minutes long and I have not heard of it on TV. Perhaps it was on TV as part of a mix of health disorders.



Barcroft TV has a history of TMAU stories for TV. Examples :
'Help I smell of fish' documentary. (youtube)
2016 video of young London lady for Channel 5 'health-disorder' programme (click for youtube video)

Barcroft
It seems they have 2.5 million youtube subscribers, so any video on there gets a lot of exposure. Barcroft is a small UK production team originally set up to provide TV channels with programs. Perhaps now they are also specialising in short stories for their youtube channel too.
Barcroft story 2016
2014 news article

Comments on this video :

A workmate can smell her.
One workmate says they can smell her. and have had complaints. This is good 'witness' evidence as usually in the videos (or in any platform) no-one reports of smelling them. It shows how for example, a TMAU person may struggle in a workplace. Despite TMAU, she is married and working, though she seems to have picked nightshift to avoid people.

Not aware of  this lady.
I am not aware of this lady on the various TMAU online social hubs (e.g. forums etc). It goes to show that there are more out there we never hear of. Personally I think 'systemic malodor syndrome' could be perhaps 1-4% of any population.

Many thanks for the publicity to the disorder. She joins the TMAU 'Hall of Heroes'.

Current stats (day 2 of the video upload, 20 Feb 2017)
220k views.
Barcroft has 2.6 million subscribers.
5th most read story over last 30 days in Daily Mail Health Section (could go higher).
2nd most read Health Section story in Daily Mail over 7 days (could go higher).
322 Daily Mail comments.
9.4k Daily Mail shares.

Other links :
IBTimes article
   

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By sysbodyodor

media, personal stories, raising awareness, tmau, TMAU personal stories videos, trimethylaminuria, video, youtube

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TMAU searches up to 12,100 a month (maybe)

Post about the popularity of the search terms tmau' 'trimethylaminuria' and 'fish odor syndrome' in google searches.

It seems they have doubled in 6 months (if the data is correct).

In a previous post about 6 months ago it seemed that searches for the keywords 'tmau' ' trimethylaminuria' were around 6,500 each, according to a program that says it monitors keyword search stats.

With the same program, the stats for the search keywords now are :

Keyword search stats per month

TMAU/tmau : 12,100.

Trimethylaminuria : 12,100.

Fish odor syndrome : 2,100.

This is quite a rise (if correct), though 'google trends' seems to show these keywords keeping quite steady over the last 90 days.

Keyword search data :
It sued to be quite easy to get an idea of google keyword search popularity from a public google stat page, but this was stopped about 2 years ago. One now needs to look around for keyword stats. This program claims to give good info (possibly from the same google data), although the google 'trends' for the keyword stats don't seem to entirely match.

Google Trends : Link to graph page below
Google trends is a public webpage where you can get an idea of keyword trends.

Below is the 90 day trend graph comparing keywords :

Trimethylaminuria.

TMAU.

Fish odor syndrome.

The trends :
The 90 day graph doesn't seem to match the 12,100/month count, but can reach maybe 100 a day.
I wonder if the term 'fish odor syndrome' has become an outdated term of search, or is more common search among 'normals'. Who knows.
TMAU : hopefully this will be the popular term that takes off (for trimethylaminuria) as it's the shortest. People seem to often misspell it as TAMU. In the trend it seems the most common term (only slightly).
The 90 day trend doesn't look like it is increasing much. The 12 month / 5 year comparisons also give conflicting stats, so 90 days was used for this as it's the longest that seems to use daily counts.

Advertiser bid prices / Cost per click (CPC)

The CPC is the general price an advertiser will pay for someone to click an ad.

CPC for :
Trimethylaminruia : $1
TMAU : $1
Fish odor syndrome : $0.02

TMAU and Trimethylaminuria seem to be pretty high value, meaning ads expect to get a decent return from clicks. That's a good sign for the community as in the end google is about ad revenue sales and means these terms are valuable to them. It looks like these 2 terms are bundled together in the sense their stats are exact same. Maybe ad buyers are tending to buy up both terms when they buy ads.

It's been noticed that ads on youtube videos about TMAU recently have had what an outsider might think of as very targeted ads. examples : charcoal, probiotics. So it looks like 'ad buyers' are getting quite targeted about what may interest viewers (or at least, they may buy). I'm guessing the TMAU community probably is quite 'receptive' to ads for supplements etc, even if it's unknown if they help.

It's interesting that the term 'fish odor syndrome' is worth only 2c. Either a sign it's not a common search or the ad buyers don't pick up on that term. Most in the community would probably rather this term would fade away as it does not describe their smells, but my guess is that TMA alone probably only smells of 'dead fish'. The other smells are probably other metabolites/volatiles (in my view). But overall it's probably best this term fades as it's misleading to those searching.

Final points :
It's uplifting that these search terms have doubled in interest over the last 6 months (if the data is right). Still probably pretty uncommon but making an inroad when people think of B.O/halitosis. Perhaps someday TMAU will be an insult in every school class, which of course would be bad but at the same time then the whole world would know about the concept of systemic body odor.
 

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By sysbodyodor

raising awareness, tmau, TMAU stats

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Most common searches to do with 'Human Malodor'

An unfortunate issue in raising awareness of metabolic/systemic malodor is that probably most who have a metabolic malodor probably do not realise they have a metabolic problem (thinking it to do with something else such as the skin, bromhidrosis, oral cavity, anus etc).

Probably the main way to connect with the potential community is being found in web searches (mainly google web searches) or via advertising.

Keyword searches for human malodor conditions
Knowing what words people use in searches is a best way to get the idea of how people use searches that may connect them to metabolic malodor, It used to be quite easy to do keyword searches (via the google keyword search tool), but now is much more difficult (the google tool is now for adwords accounts only).

Looking around for an alternative, I did manage to find another limited keyword tool (Uber Suggest).

Keyword popularity for words that may be to do with 'metabolic malodor.'

Number is the rough amount of web searches in Google USA per month 

Halitosis                                110,000

Body Odor                                8,100

   Bad Breath                              33,100   

Trimethylaminuria                    6,600

TMAU                                      3,600

Fish odor syndrome                  2,400

Comments :
From these keyword searches it seems the main malodor word is 'Halitosis'.
'Body Odor' search is surprisingly low.
'Trimethylaminuria' is the most common search to do with that condition ?

Conclusion
It seems we have a long way to go to raise awareness of the concept of systemic/metabolic malodor disorders, even probably among our own.

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By sysbodyodor

common malodor questions, 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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Update on stats of Cassie TMAU video

TMAU activist Cassie appeared on UK TV program Medical Mysteries last Thursday (March 2016) to raise awareness of trimethylaminuria (TMAU).

This blog uploaded a copy of the video to our Youtube Channel.

Regular readers will be aware it got a quick surge of views (around 2600) in 3 days. Below is the info I have on the stats of the youtube video and the TV show itself.

1. The TV show itself got around 0.9 million viewers on first showing. This is probably average for Channel 5 UK in that timeslot. It will also be repeated quite often in the next few days/weeks. It's a fair showing, though TMAU has appeared on UK shows with around 4 million. Despite this , it still seems probably 99% unknown in the UK. I reckon probably a public ad campaign will be needed to penetrate the public conscious about TMAU.

2. There doesn't seem much new activity on the TMAU forums after the program, such as rareconnect and tmau.org. I thought there would be some new posters but it seems not.        


Youtube channel stats on Cassie TMAU video :

1. At first there was a huge surge for 2 to 3 days almost immediately (2,600 views in 48 hours), but now it has tailed away to around 40 views a day. I now know this surge was due to the video being embedded on Romanian news website Kanal D Romania : TMAU on Kanal D

This made up around 95% of the first 2 day views.

2. The video is blocked in the UK due to copyright restrictions. This means no-one in UK can watch it and it won't show up in UK google searches. But it is viewable everywhere else it seems, and my channel copyright status is 'good', which means the copyright owners are allowing it to be viewed outside UK. I presume there is an ad on the video, with the money going to the copyright holders.

3. So far, outside of Romania there has been few viewers. Perhaps 200 or so in 5 days. Maybe a few initially were subscribers. It does not seem to be getting many clicks on e.g. google search, but I am hopeful this will grow. I thought it may be able to go viral but this now seems not the case. May now be the same as previous videos and 'preaching to the converted' or those very worried about an odor, but not reaching the general public. We will see.

So thanks again to Cassie for putting herself forward to appear on TV about probably the most embarrassing condition. It is something 99%+ of us would not do. And who knows how many people it will help, as well as the passive benefit of people being able to view the video on youtube for foreseeable future.

My random suggestions for TMAU / Systemic Body Odor campaigns :

Ads that reach the public :
e.g. a bus ad (1) via London (£900 for a month ?) , New York.
e.g. a TV ad. On lesser programs these can be relatively cheap but need to make ad etc. Much dearer than bus ad.
e.g. Stationary public place ad. Not so keen on this in case it's defaced.

Awareness campaign to Dr's surgeries
I had a look for a list of surgery Dr emails but could not find one other than paid for mailing lists.

Apply to shows / magazines / newspapers that have high profile.

Links :
Original blog post about Cassie video 
Blog YouTube Channel (Systemic Body Odor)
        
My view on TMAU :
Personally I think if someone smells metabolically, then an enzyme is at fault and they may smell of any substrate that enzyme neutralises. In the case of FMO3 this is many sulfides, amines, and phophines. Through a quirk of fate someone with a fish smell was tested for TMA 46 years ago, and since then no-one has researched the concept of sysbo since then. So TMAU is the 'only peg' we have to hang the concept of sysbo on, so I see it as a trojan horse to raise awareness about systemic body odor.

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By sysbodyodor

raising awareness, TMAU personal stories videos, video, videos, youtube

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Cassie TMAU video : Channel 5

Cassie's TMAU story was on UK TV Channel 5.
Program title : Medical Mysteries, The woman who smells of fish.
Aired March 2016.

The video (youtube) can be seen below
Note : due to copyright, this copy is blocked for UK viewers.
Update : Video now seems to be viewable in UK. 

UK viewers, you can watch video copy on Daily Motion

My comment :
Cassie done a great job on the show. The TMAU story was only about 8 minutes of a 50 minute program, but a few things make me think 'TMAU' may be a 'seller' when it comes to these types of programs ('weird' health disorders):

1. It was the first show of a new program and they named it 'the woman who smells of fish'
2. The production company 'Tigress productions' have done a TMAU documentary before and may have got a lot of feedback previously.
3. The program was mostly about the other 2 stories (20 minutes each ?) but was named about 'smelling of fish'. So even though it seemed to have last priority it was used as the 'bait'.
4. My understanding is that 'woman who smells of fish' was trending on twitter UK in some areas when it was aired.      
5. The show got a reasonably 'peak viewing' time (Thursday 8pm)

Dr Lachmann appeared on the show (as producers tend to go for him as the 'health professional expert', partly since there are so few I guess) and made some good points :
1. Most do not smell when seeing him. He said it was because they probably already do a lot of stuff to avoid smelling but imho it's because most of us are naturally very 'transient'.
2. Most complain of fecal and garbage smells. I guess he said this due to it being by far the most common complaint. IMHO it's because they will smell of many sulfides and amines oxidized by FMO3, but at the moment no expert would be prepared to say that or maybe even believe it.
3. One or 2 visit him a week. I presume he means new referrals (?) but maybe not. And this is only the ones in the area eligible to visit him, as well as taking the time to find out about him and follow it up via their GP.  

He made a few other points such as 'it's rare' (which I don't agree with) and Drs mostly know nothing about it (true).

Video has 2,600 views in 1 day
I uploaded the video yesterday and despite being blocked in UK it has had 2,600 views in 24 hours. My best video before this was Claire's video which has 75k views since 2010. For some reason it seems to have caught on in a way the other videos haven't, seemingly to a wider audience (relatively). Currently I don't know where the main sources of the traffic is coming from. I wouldn't say it's went 'viral' but it's getting a good steady flow of viewers (will keep you updated).

So thanks to Cassie for doing the show. It's looking like it will be a great source to raise awareness of TMAU which is very much needed.          

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By sysbodyodor

community, raising awareness, tmau, TMAU personal stories videos, video, videos, youtube

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FMO3 DNA test survey

Click image for survey

A survey for those who have results for the FMO3 DNA test
SURVEY STILL OPEN
An 11 question blog survey
To collect some useful data about FMO3 test results
From those who have a systemic/metabolic malodor concern
All questions are optional

Tested FMO3 gene ? You can do the survey
Link to FMO3 test result survey

link to give to others
https://goo.gl/zHUan6

FMO3 survey latest 03/16   

I created this survey as a way of collecting some FMO3 test result data.
I will make some of the data public in a collective fashion so that it is non-identifiable
Maybe it will show a pattern among us

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By sysbodyodor

Body Odor, fecal body odor, fmo3, FMO3 research, malodor survey, metabolic malodor, metabolic/systemic malodor research, raising awareness, systemic body odor, systemic malodor syndrome

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TMAU Youtubers

Recently there has been an increase in 'TMAU Youtubers', which all sufferers are grateful for as it raises awareness and brings comfort. Metabolic Malodor is a very 'taboo' subject, which is why it is so unknown. TMAU is the only test on offer for the concept of  'metabolic malodor', so many who feel they have a metabolic malodor disorder identify with TMAU. My own belief is that most cases may be more to do with all 'FMO3 substrates' (many sulfides and amines) rather than just trimethylamine, but TMAU is the only test on offer currently.

This is a new TMAU Youtuber. This is an embed of their video. If they delete their videos it will auto-delete here too. You can subscribe to her channel for updates.

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By sysbodyodor

Body Odor, media, metabolic malodor, personal stories, raising awareness, systemic body odor, systemic malodor syndrome, TMAU personal stories videos, video, youtube

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YouTube : Another young lady talks TMAU

Another young lady has posted a video talking about living with TMAU. This greatly raises awareness, Thanks to all the people who post videos on the subject.

This is an embed of the video. Should the original be deleted this one will auto-delete too.

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By sysbodyodor

community, personal stories, raising awareness, tmau, TMAU personal stories videos, video, videos

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Prof Dolphin posting on UK TMAU forum

Professor Colin Dolphin has posted again on the tmau.org.uk forum. He posts there occasionally. He was a member of the research team who first documented the FMO3 gene coding sequence (circa 1998?) and has a long interest in TMAU/FMO3.

He posts there as 'FADworker'

new Prof Dolphin post

He has his own section in the forum :  'Questions for Dr Dolphin'

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By sysbodyodor

community, raising awareness, tmau

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Young lady talks TMAU on youtube

This is a young lady talking about TMAU on youtube.

The video below is an embed of the original (i.e. the same source)

If she ever chooses to delete the video it will auto delete here too

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By sysbodyodor

personal stories, personal treatment, raising awareness, video, youtube

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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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'The Boy Who Smells Like Fish' now available to stream

The TMAU movie 'The Boy Who Smells Like Fish' released in 2013 has now been re titled and re-marketed as 'Treading Water'.

It will screened in some USA cities this week (March 13th 2015)

It is also now available to watch via most major movie streaming sites (eg iTunes, Amazon, Google Play, Cable, Satellite, Xbox, PlayStation and VUDU)

Itunes link       

Amazon : link      

Google Play : link

check for availability with other streaming sites

Cinema screeniungs
The retitled movie (now 'Treading Water') will be shown at the following USA cinemas from 13th March

Cinema Village (New York, NY)

Laemmle Music Hall (Los Angeles, CA)

PFS Roxy (Philadelphia, PA)

Plaza Theatre (Atlanta, GA)

Harkins Shea 14 (Phoenix, AZ )

Harkins Northfield (Denver, CO)

4-Star Theater (San Francisco, CA)

Studio Movie Grill (Dallas, TX)

Sundance Cinema (Houston, TX)

Sundance Cinema (Seattle, WA)

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By sysbodyodor

announcement, media, raising awareness, tmau

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BORC recorded call with London TMAU nutritionist

Body Odor Resource Center

Thanks to Lisa of the Body Odor Resource Center for arranging another great phone conference call for the trimethylaminuria (TMAU) community today.

This time the guest was :
Kit Kaalund Hansen of the Metabolic Kitchen London

You can listen to the call and previous conference calls on the BORC website
listen to BORC recorded conference calls

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By sysbodyodor

media, metabolic malodor patient advocacy, raising awareness, webinar

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Young lady TMAU essay for Rare Disease Day Flickr project

# I’mNotTrash-TMAU

A young lady has written an essay about living with trimethylaminuria (TMAU) for a Rare Disease Day project on Flickr created by rareconnect.org. The image that goes with the story is striking and thought provoking. Perhaps others can also create images that get across points about malodor quickly to the public, such as TMAU or other systemic body odor or halitosis conditions. You can read her article on the Flickr website.

 Click on the image to read the article on Flickr

My comment on the image :
I am very impressed with the message of the image, as the words capture the point very well that most people suffer from a wide spectrum of malodors. Personally I think most people with 'fecal body odor' probably have an issue with all FMO3 substrates, most likely due to a weakness in FMO3 function of some sort. FMO3 oxidizes many of the malodorous sulfides and amines generated in humans. I may try to create my own 'campaign banner' to get across this message. These sort of images could play a role in raising awareness of systemic malodor syndromes I think.

The image would make a good billboard poster or bus poster for an awareness campaign

Link to the article : TMAU testimony on Flickr Rare Disease Project
Link : Her Facebook TMAU Campaign Page

Link : rareconnect.org TMAU group
Link : Rare Disease Day

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By sysbodyodor

fund raising, join in, media, personal stories, raising awareness

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Movie 'the boy who smells like fish' has been uploaded to YouTube

Someone has uploaded the full length movie 'The Boy Who Smells Like Fish' to youtube. It has to be assumed that it is uploaded 'unofficially'.

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By sysbodyodor

raising awareness, video

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Idea : Billboard advertising campaign to raise awareness

Very few of the public are aware of the concept of metabolic malodors such as TMAU. Awareness would instigate research and sympathy.  Also in my opinion maybe 1% of the population may suffer from 'intermittent fecal body odor/TMAU' (which I currently believe to be FMO3 substrate malodor')

Question : How can the metabolic malodor community raise awareness ?
Idea : Billboard campaigns funded by crowdfunding

For instance a New York subway billboard campaign for a week might cost maybe $1000 (random guess). This could be crowfunded by the community via sites such as Indiegogo..

Possible advertising locations :
Major cities (e.g. New York)
Subway ad, Bus ad etc

Possible ad campaigns :
My suggestion would be to make it around TMAU or metabolic malodor in general
I would suggest mentioning a website to give those interested somewhere to go online
Random example : 'Fecal Body Odor ? It could be metabolic. Visit www ... etc'

How are location ad campaigns done ?
Usually via ad agencies

In summary 
Crowdfund for a location ad campaign (say $1000)
Put a billboard ad in a major city

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By sysbodyodor

fecal body odor, fund raising, media, raising awareness

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Young UK TMAU lady on Irish Radio

Cassie is a young British lady looking to raise awareness of trimethylaminuria (TMAU) as it is a disorder that the public and health professionals are unaware of. Here she helps all sufferers by appearing on an Irish Radio show to discuss her TMAU. The interview was on the popular nid-morning Tubridy show on Irish national radio station RTE2FM. Such media appearances have a big impact on raising awareness. Most times the person appearing says they heard of the disorder from a previous media appearance.

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By sysbodyodor

media, metabolic malodor patient advocacy, personal stories, raising awareness, systemic body odor, systemic malodor syndrome, tmau, video, youtube

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