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Australian NPC Disease Foundation Inc.

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

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.

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

Committee

Deanna Carpino

Deanna Carpino

President

Committee

Mandy Whitechurch

Mandy Whitechurch

Immediate Past President & Founder

also Founder and Adult Patient Liaison

Committee

Nathalia Rios

Nathalia Rios

Committee Member

also Assistant Treasurer

Committee

Anne La

Anne La

Committee Member

Contractor

Ellie Van Velsen

Ellie Van Velsen

Project Coordinator

also Scientific Advisory Board Member

Scientific Advisory Board

Phillipa Johnston

Phillipa Johnston

Board Member

Tenterfield Vet Clinic

Committee

Sarvesh Soni

Sarvesh Soni

Vice-President

Committee

Girish Rathor

Girish Rathor

Committee Member

also Systems Officer

Committee

Marian Shoebridge

Marian Shoebridge

Committee Member

Committee

Anusha Kafeel

Anusha Kafeel

Committee Member

Scientific Advisory Board

Ya Hui Hung

Ya Hui Hung

Head of Scientific Advisory Board

Melbourne Dementia Research Centre, The Florey Institute of Neuroscience and Mental Health

Scientific Advisory Board

Sharmila Kiss

Sharmila Kiss

Board Member

Royal Children’s Hospital

Committee

Salman Alfarizi

Salman Alfarizi

Treasurer

Committee

Carly Heath

Carly Heath

Committee Member

also Project Lead for NDIS Pathway Project

Committee

Mary Calcagno

Mary Calcagno

Committee Member

Committee

Alexandre Domingue

Alexandre Domingue

Committee Member

Scientific Advisory Board

Ashley Bush

Ashley Bush

Board Member

Melbourne Dementia Research Centre, The Florey Institute of Neuroscience and Mental Health

Scientific Advisory Board

Felicity Munro

Felicity Munro

Board Member

Future Directions Fitness

Committee

Ted Sherwood

Ted Sherwood

Secretary

Committee

Vince Demarte

Vince Demarte

Committee Member

Committee

Felicity Munro

Felicity Munro

Committee Member

Committee

Pip Johnston

Pip Johnston

Committee Member

also Paediatric Patient Liaison

Scientific Advisory Board

Caroline Hastings

Caroline Hastings

Board Member

UCSF Bienoff Children’s Hospital

Scientific Advisory Board

Tina Soulis

Tina Soulis

Board Member

Alithia Life Sciences

Executve Committee
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