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Australian NPC Disease Foundation Inc.

A registered charity dedicated to supporting families, raising awareness and funding research for a cure of Niemann-Pick disease type C.

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 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.

About Us
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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.

Why we show up

Meet the Committee

Executive Committee

Mandy Whitechurch

Mandy Whitechurch

President & Founder

also Adult Patient Liaison

Executive Committee

Andrew Carpino

Andrew Carpino

Public Officer

also Corporate Liaison

General Committee

Carly Heath

Carly Heath

Committee Member

Executive Committee

Pip Johnston

Pip Johnston

Vice-President

also Paediatric Patient Liaison

General Committee

Elisa Calcagno

Elisa Calcagno

Committee Member

General Committee

Sarah Mercuri

Sarah Mercuri

Committee Member

also Merchandise Manager

Executive Committee

Mary Calcagno

Mary Calcagno

Treasurer

General Committee

Milva Carpino

Milva Carpino

Committee Member

General Committee

Marian Shoebridge

Marian Shoebridge

Committee Member

Executive Committee

Deanna Carpino

Deanna Carpino

Board Secretary

also Marketing Manager

General Committee

Vince Demarte

Vince Demarte

Committee Member

General Committee

Ellie Van Velsen

Ellie Van Velsen

Committee Member

also Scientific Advisory Board Member

Executve Committee

Our Community Partners

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Our Partners
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