About Us
Research. Cure. Persevere.
Founded in 2009 by an Aussie mum with two recently diagnosed boys, this volunteer-powered charity organisation is the culmination of parents trying to save their children from an incurable and fatal disease.
The Australian NPC Disease Foundation Inc is a registered not for profit organisation that is about supporting those left in the gap, raising awareness and funding research to slow or halt the progression of Niemann-Pick disease type C.
Why we show up
If necessity is the mother of all inventions, then that is certainly why the ANPDF was created. With no support organisation to turn to, no treatments available, and no hope... Founder and current President Mandy Whitechurch, was determined to bring hope to Australia for her two sons, Matthew and Timmy. The issues she faced in the beginning are still true today, which is why the foundation's goals have not changed.
To Raise Awareness
The average diagnosis time for Niemann-Pick disease type C is 5 years.
The primary motivation for raising the profile of this disease is not necessarily to fundraise. It is to improve the time available for dedicated treatment. To those already on a life-limiting clock, an additional year (let alone 5 years) of the correct combination therapies could be the single rice grain that tips the scale.
To Support Families
Any fatal diagnosis can leave the family with feelings of isolation, grief, fear and bewilderment. ANPDF provides practical information, financial and emotional support to both patients and families who choose to reach out.
To Fund Scientific Research
Our dedicated committee and community raise funds for vital medical research into potential therapies at The Florey of Neuroscience and Mental Health. Find out more here.
Meet the Committee
Scientific Advisory Board
Ya Hui Hung
Head of Scientific Advisory Board
Melbourne Dementia Research Centre, The Florey Institute of Neuroscience and Mental Health
Scientific Advisory Board
Ashley Bush
Board Member
Melbourne Dementia Research Centre, The Florey Institute of Neuroscience and Mental Health