Our History

The Advocacy for Neuroacanthocytosis Patients was established in 2002 by Glenn and Ginger Irvine after their daughter, Alexandra (Alex) Irvine, had been diagnosed with the disease.

Glenn, Alex and Ginger Irvine

Dr Adrian Danek who examined Alex as part of the first coordinated study of patients who were genetically diagnosed with a neuroacanthocytosis syndrome, has been involved with the Advocacy ever since. He has played a central role in its development and growth and currently chairs the Advocacy Board of Fellows.

Dr Ruth Walker, who has a long-standing collaboration with Dr Danek, works closely with the Advocacy, leading seminars and research projects while also serving as a founding member of Neuroacanthocytosis Advocacy USA Inc., an organisation in the United States that is independent from the Advocacy for Neuroacanthocytosis Patients, although the two charities work towards the same goals.

Dr Ruth Walker and Professor Adrian Danek