Tony and Lisa Flint’s son Jake, now 13, suffers with one of the World’s most rare and complex brain diseases; Aromatic Amino Acid Decarboxylase (AADC) deficiency. Their personal and extensive experience with the disease and at the time, severe lack of global support and research, inspired them in 2006 to found The AADC Research Trust.
The AADC Trust was formed with the help of Co-Directors Jacqui and Brian Jefferies, Medical and Scientific Director, Professor Simon Heales and of course with the support of family, friends and supporters.
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The Trust was set up to aid and support children around the world suffering the same condition as well as raising the much needed funds for AADC dedicated scientific research.
“When we started we knew of just 30 children suffering with the disease…we have now discovered more than 100 children spanning 26 countries. Many children are lone sufferers in their country with very little medical and therapeutic support. Our dedicated family forum allows families from around the world to communicate their unique experiences with each other and offer hope and support at extremely difficult times”
“We are also extremely proud that in such a relatively short space of time The Trust, so far, has pledged funds for dedicated AADC research projects in London, Switzerland, Malaysia, Taiwan and The Netherlands".
Our hope is possible...to find a treatment strategy that drastically improves AADC function and thus improve the quality of life of an AADC affected child.
Our dream is simple…to cure AADC Deficiency.
We rely on the goodwill of the public to help us with our hopes and dreams and would like to take this opportunity to thank all those who have been so dedicated to our cause”
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