Dear members, friends and supporters

This is just a quick note to let you know about the forthcoming Australian trimethylaminuria Foundation website which is being built and will be up and running in about 2 weeks.

The domain name we bought is www.tmaufoundation.org.au . Hosting has been arranged and construction is proceding apace.

The site will touch on all aspects of TMAU and include a forum for people to chat about matters that concern them. However, the site is primarily directed towards raising funds to get the science done so that we won't have to live with this damned condition any longer.

The research that will be funded will be that proposed by Dr John Christodoulou. I have (with his permission) uploaded his proposal to the files section of this site so that people can see where their donations will be going. This fund is not like the NORD fund which is absorbed into NORD's general fund if, after a certain time a certain amount is not raised. In the past such funds have been absorbed and not gone to TMAU research. This will not happen with the ATF fund. In the end, it doesn't matter where the science gets done. It could be done in Timbuktu for all I care - as long as it gets done and gets done yesterday. TMAUers are all over the world and belong to every race in every country. If we are going to fix this thing we need to think globally so that we can speak with one voice and make a big noise to attract funding. We may be sufferers of a rare condition but count us up among the worlds 6 billion people and there are hundres of thousands of us at least and probably an order of magnitude higher than that.

As well as smaller donations from TMAUers themselves the ATF is now contacting philanthropic organisations and large pharmaceutical companies requesting funding. We will also be making requests to federal and state Health Departments here in Australia. I will post more about these efforts when successes occur - I don't want to shoot my mouth of just yet before the fish is in the bag (pardon the pun). Moreover, our website will be using the Google pay per click facility so that the ATF site will come up when people key in certain phrases calculated to attract potential donors. Also, I'm hoping Sharon and the other moderators of online forums and those with blogs like Maria will post links to the ATF on their pages. There is also our benefactor in Melbourne with whom negotiations are still afoot.

Ah, so much to do! But we'll get there. We must! I am soooo sick of TMAU! As well as preventing children suffering what I and many of you went through as a child (and all my life up to the age of 47 when I was diagnosed) I want to get an effective treatment in our generations lifetime (I'm nearly 54) so I can know what it's like to live without TMAU (or at least without it's symptoms and the notoriously difficult and not always effective low choline diet). Mmmmm, I can smell the fish and chips now!

So have a look at Dr C's proposal. Think about ways to attract donations no matter how small and imagine yourself living without TMAU.

Cheers

Rob