Tuesday, November 11, 2008

The Australian Trimethylaminuria Foundation website under contruction

Robert Brown, the founder of the Australia Trimethylaminuria Support Group, is currently constructing a website. In the near future, it will very likely be first place in a google search of trimethylaminuria, a hub for sufferers as well as any researchers searching the condition. As well as support and education, he hopes to raise money for research. This could be the start of something important to sufferers of all metabolic odor conditions around the world. It is an example of how sufferers can use the internet to actively help themselves as a group. Thank you Robert, we all look forward to the website and to contributing to the fund.

The ATF is a not for profit organisation whose goal is to find better treatments and eventually a cure for trimethylaminuria (TMAU) and other as yet undescribed genetically mediated errors of metabolism that result in malodour disorders.
Better treatments and a cure for TMAU will only come about as a result of science. Until we can get the science done thousands of people will continue to suffer because of TMAU and similar conditions. Unfortunately, getting the science done costs money. Our primary goal is to raise that money.
http://australiantrimethylaminuriafoundation.com

update: New website is now proposed to be at this location :

http://www.tmaufoundation.org.au/




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Regular FREE (long distance call plan) General and Women-only Phone Conferences

USA : (712) 432 1620
access code : 391629#
NON USA : add 001 prefix
General Conferences: normally every other Sunday at 2pm EDT.
Next call : Sunday February 21th : 2pm EDT

Scroll down for next Women's conference
Women's Conferences: normally every other Thursday 8.30pm EDT. Next call: October 29th at 8:30p.m. EDT


Arranged by the leaders of the bodyodorsupport.com forum

Note: can also be used anytime for unscheduled group chats

Free USA-based phone conferences (if you have a long distance call plan. Otherwise you will be charged as a long-distance call)

For USA-based : (712) 432 1620 then type the access code on your phone keypad: 391629#
Non USA : prefix above with 001 but check to see if it is free with your supplier


Record number of callers : 70+
If privacy is a concern, code your phone to PRIVATE mode
This phoneline can be used anytime to talk to other sufferers
You don't need to talk. You can just listen

Meet-up/Support group contacts

UK : Arun Nagrath: arunnagrath@hotmail.com
Miami : Maria: mpdela1@gmail.com

Action plans

Write an essay on your odor problem for Richards anthology project
contact your Senator about blood-borne BO/halitosis
write to 'the Doctors' TV show
contact the DrHoffman show on WOR710
tell the Office of Rare Diseases about your problem
try the asparagus urine test
Fecal Body Odor Volunteer for media appearances ?
Politicians ?
Ask an expert if they will put up a Q&A section on their websites like Emory have

suggestions

Thinktank

Bluesky ideas to promote thought:

PTC124(Ataluren, or similar) for primary TMAU due to nonsense mutations
Genetically modified probiotics enriched with FMO3 ?
Trimethylamine strip test paper for daily urine testing? (possibly used in the fish industry ?)
BO&Halitosis research center
BO&Halitosis research fund
Can FMO enzyme be induced in a helpful manner ?
Ask an expert if they will put up a Q&A section on their websites like Emory have
BO&Halitosis 'rehab' retreat (?)
TMAU cookbook/advice book
Employ an expert to do the most thorough choline list
Employ Body odor/halitosis expert(s) (?)
Encourage breath-analysis manufacturers to make portable handy analyzers for metabolic odor problems
TMA urine dipstick test
Is trimethylamine an FMO3 inhibitor ?
Campaign : add TMAU to the newborn screening program
Orphan drug program

Send in your ideas or post them on the forums: Contact experts