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When Lisa married her husband Tony some 32 years ago they had a future all planned out! She’d been happily brought up in Surrey, UK - Tony too, and despite being nonacademics, they had individually put very successful career patterns in place. Over the years they were delighted to welcome their precious new arrivals to the family unit, with their three adored sons enhancing their successful, busy lives. 

 

This was the happy prelude before all things changed as fate stepped in! Jake Flint, the youngest of Lisa’s sons was finally, after 300 medical appointments, correctly diagnosed with a very RARE brain disease called Aromatic Amino-acid Decarboxylase deficiency (AADCd). A welcome discovery following his 3.5 years of an incorrect medical diagnosis of Quadriplegic Cerebral Palsy with an unknown aetiology. Lisa’s decision, taken 3 years earlier, had been to forego her previous career objectives in order to watch over every aspect of Jake’s growth and behaviour, instinctively knowing that something was seriously wrong and he needed her help.

 

Little did she realise there would be 17+ years of relentless personal study and scientific research, questioning everyone possible on the subject of AADCd whilst raising awareness. And it’s through such unstinting commitment that she has become the key connection between the now discovered AADCd patient population and the worldwide Medical & Scientific Community on the subject. With her exceptional understanding of the disease mechanism and knowledge of the daily cocktail of patient drugs involved, her advice, experience and support are globally sought from affected families and medical institutions all over.

 

The year 2006 saw the formation of her registered charity The AADC Research Trust, supported by expert members of a Medical & Scientific Advisory Board, which has become a lifeline to affected families of those children with a rare brain disease such as AADCd. Through TV appearances, advertising, fundraising on every level, organising UK medical conferences and personally attending overseas medical meetings plus funding new protocols, Lisa has taken AADCd awareness from strength to strength. She says, “Through the Trust we have made astonishing headway to include the development of an International Database and a specific registry for patients with AADCd and other neurotransmitter diseases. We have also been instrumental in driving pioneering brain delivered AADCd Gene Therapy trials and working with a team of genetic scientists to understand the various mutations and their impact on disease severity.”

 

As a non-medic with an unquenchable scientific curiosity Lisa has also achieved recognition as an author on the Consensus Guidelines for Diagnosis & Treatment of AADC. She believes staying ahead with translational science is critical to the discovery of a cure.