Rob Brown is the chairman of the Australian TMAU Foundation and, as we have mentioned before, has previously mentioned that research into trimethylaminuria would be forthcoming in the near future. Today he announced on his TMAUcure Yahoo forum that a proposal has now been put forward, subject to fundraising (to the amount of around
AUD $633,000) for the 3 year research program.
The lead researcher will be Dr John Christodoulou (Western Sydney Genetics Program, The Children's Hospital at Westmead, Sydney, Disciplines of Paediatrics and Child Health & Genetic Medicine, University of Sydney, Sydney), who has many years experience in genetics and will be known to Rob and many Australian TMAU sufferers.
The research looks to be the most hopeful research into trimethylaminuria yet, including work to set the latest 'standard' (probably the 'gold standard') in trimethylaminuria urine and DNA testing (which should be completed within a year), and also 2 lines of research into potentially very useful treatments for TMAU.
The first idea is that a drug (PTC124 ... now known as Ataluren) currently under trial, has been shown to allow 'nonsense' mutations to work correctly. This drug may be able to correct enzyme function in those who have nonsense mutations. The research would be on mice. More can be read about Ataluren here
The second line of inquiry is attempting to colonize the gut with a harmless bacteria that has the ability to detoxify trimethlyamine in the gut. If you like, a TMAU probiotic. Again, the work would be on mice. The bacteria is Methylophilus methylotrophus. Presumably either it is naturally rich in FMO3 enzyme, or else it will be genetically engineered to be rich in FMO3.
It goes to show what could be tried if researchers took a direct and serious approach to the problem, rather than research that seems to be indirect. No doubt a group of scientists looking to cure body odor and halitosis (for instance, a government funded Body Odor and Halitosis Research Center set up because of political lobbying pressure) would likely go the same route (such a group first discovering that most cases seem to be metabolic, and then taking the same approach as above)
More posts will follow on this research. A big thank you to Rob and everyone concerned. The blog will be fully supporting this program, and keeping you updated. In a new post, Rob has said he expects his Australian trimethylaminuria Foundation website to be up within 2 weeks or so.
10 comments:
Sounds absolutely wonderful! A very, very big thank you to Mr. Rob Brown and Dr. John Christodoulou!
Any Progress on this. I am desperately waiting for the cure... :(
Unfortunately funding could not be found for the project. There is a small funded study going on at Monell just now that should give results soon. Also it is hoped that other projects may be possible in the future.
Still no cure? :( My life has been a NIGHTMARE! tears and so much more:(
Same here. I drive a city bus and everyday is hell. People give me looks of confusion. I wish the funding would go through so we can just be normal again. I cry sometimes and ask why me.
I feel depressed and I cannot open up my situation to others. I really hope there's a cure soon.
My life is just beyond miserable. Please get us a cure for this nightmare
Hang in there. There is very promising research for a treatment going on as of now(Trinzyme). We are the closets we have ever been to a treatment. There is a reason to be optimistic!!
If there is a support group for people like us, please post a link. Its hard for me to maintain a job and be around people without being talked about or snide comments. I appreciate that there are researchers on it, but I don't want to lose to my insecurities that developed because of this. I trying to keep it together.
please write me an email with this question, and we can discuss it. maria.delatorre@meboresearch.org