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AADC Trust Visit to Malaysia
13 January 2010

As a result of the Trust’s significant visit to Malaysia in November 2008 we can report that three Malaysian children have been diagnosed as AADC deficient.  The diagnosis in each case was achieved after our important meeting, primarily highlighting Paediatric Neurotransmitter Disease (PND) awareness.  At the same time the Trust also crucially aided the setting up of neurotransmitter testing facilities locally, using the HPLC system and CSF samples collected from children who remain undiagnosed and neurologically challenged.  The resulting three diagnosed children can now hopefully be given the opportunity to improve their condition with the use of current AADC medications; and their families can finally explore all appropriate therapy options available to them at this time. 

Immediately following our visit, it was arranged for PhD student Chooyuen Ting, from the Metabolic Laboratory at Kuala Lumpur Hospital, to travel to the UK and work with Professor Simon Heales in London for intense training on CSF analysis and understanding and interpreting results.  Also, a recent and interesting development is that she is now collaborating with a Paediatric Lecturer from University Malaysia, on the testing of children with unexplained cerebral palsy for neurotransmitter diseases.  She currently awaits the samples and we will be updating the website on the findings once this project has been completed.

We would also like to congratulate Chooyuen Ting on her promotion to Ampang Hospital and are very grateful that she will still continue with her involvement in neurotransmitter testing at Kuala Lumpur Hospital on a two day week basis.

On behalf of the Trust, its families and all AADC and neurotransmitter affected children, thank you for your dedication and unwavering interest in the most serious subject that wholly affects our lives.

The AADC Research Trust