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Welcome to NP-C Corner

Updated: Apr 25

This is the first of (hopefully!) many blog posts to come.


Who am I?

My name is Ellie. I have two cousins who were diagnosed with Niemann-Pick Type C Disease (NP-C) as teenagers.


I have worked as a carer for people with NP-C and am on the Science Advisory Board for the Australian Niemann-Pick Type C Disease Foundation (ANPDF).


I am a student finishing off my Masters degree in Genomics and Health. My studies include a range of topics including rare genetic conditions, types of genetic testing, and screening measures.


My passion is learning more about people and what makes us who we are. I hope that in my future career, I can make science topics interesting and easy to understand for everyone!


Why a blog?

The motivation behind starting this blog was to help talk about ideas, considerations, and approaches to coping with NP-C as an individual, family, and community.


I will be including scientific research and concepts in my posts, so everything that I say (unless otherwise stated) is backed up with evidence. I would love for people to engage with these posts – so any feedback is welcome.


My question to you

I need your help in discovering what topics need a voice. What do you want me to talk about or see on this blog?


ANPDF is about the whole of the NP-C community – researchers, families, clinicians, and more. I want to do my best to write blogs that appeal to the needs and/or interests of the readers.


Want to know some special tips for NDIS funding? Ideas for wheelchair-friendly activities in Melbourne? How to take care of yourself whilst you take care of others? Let me know!


Stay supportive and supported,

Ellie



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