Meet our new and returning committee members!
We are excited to introduce you to the team that will lead the Australian NPC Disease Foundation (ANPDF) in 2024/25. They were elected at our virtual Annual General Meeting, where we also discussed our future projects and goals to fight NP-C.
The AGM covered various reports and discussions, including the addition of Dr. Brendon Boots and Dr. Sharmilla Kiss to the Scientific Advisory Board. Mandy's President's report highlighted key points such as patient updates, staff changes, and potential presentations to the PBAC. The AGM saw Mandy re-elected as President and Mary re-elected as Treasurer, with the creation of a new position of Assistant Treasurer, occupied by Sarah. The team also discussed a potential trial for a new drug, the status of various medical proposals and treatments, and fundraising strategies.
Meet Amy (Board Secretary): Amy is a compassionate and dedicated individual who has a personal connection to Niemann-Pick disease Type C (NPC) through her daughter's diagnosis. Inspired by her daughter's strength and courage in facing the challenges of this complex health condition, Amy is committed to making a positive impact in the lives of individuals and families going through similar journeys. As the Board Secretary for the ANPDF, Amy will bring her passion and organisational skills to support the foundation's mission. Her goal is to foster collaboration, facilitate communication, and bring hope to those affected by NPC.
The first General Manager of the ANPDF was also elected, Deanna Carpino, who has served in multiple Executive Committee positions over the last 5 years. She will be responsible for overseeing the operations and growth of the ANPDF in its endeavours to raise awareness and funds for research on Niemann-Pick disease type C.
Executive Committee members:
Mandy Whitechurch, President & Founder
Mary Calcagno, Treasurer
Amy Leddick, Board Secretary
Andrew Carpino, Public Officer
General Committee members:
Sarah Mercuri, Assistant Treasurer
Pip Johnston
Marian Shoebridge
Milva Carpino
Vince Demarte
Carly Heath
General Manager:
Deanna Carpino
Scientific Advisory Board members:
Ya Hui Hung, Chair
Ashley Bush
Caroline Hastings
Felicity Munro
Mark Walterfang
Pip Johnston
Tina Soulis
Ellie Van Velsen
Brendon Boots
Sharmilla Kiss
If you wish to #jointhefight for a cure of NP-C, find out How to Help today or subscribe to stay up to date with future opportunities.