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NP-C Corner: Hope on the Horizon
“Just go home and make memories” These words have rung in the ears of parents as a doctor drops a life-changing diagnosis of Niemann-Pick...
Ellie Van Velsen
Dec 18, 20242 min read
62 views
NP-C Corner: Unpacking the Blood-Brain Barrier – A Key to NPC Treatment
The blood-brain barrier is a roadblock in NPC treatment, but new strategies aim to safely deliver therapies directly to the brain.
Ellie Van Velsen
Nov 8, 20243 min read
87 views
NP-C Corner: Genetic Counselling and NPC
We invited our favourite Melbourne University volunteer to share his thoughts in this special edition of the NP-C Corner. Check it out!
Dave Badcock
Oct 8, 20242 min read
22 views
NP-C Corner: Global Research is Lacking
Limited clinical trial opportunities and a decrease in global trials over the past 5 years means advocacy has never been more crucial.
Ellie Van Velsen
Aug 1, 20242 min read
31 views
NP-C Corner: Living with Loss
There is no perfect grief guide for when this day comes, but there is information that can help people understand how to navigate grief.
Ellie Van Velsen
May 8, 20244 min read
47 views
NP-C Corner: Losing the ability to eat safely
Sometimes you never realise what you have until it’s gone. Join Ellie as she explores what PEG feeding means for those living with NP-C.
Ellie Van Velsen
Apr 8, 20243 min read
85 views
NP-C Corner: Everyone deserves to be seen
Do you use person-first or identity-first language? Ellie shares how she learned to be more inclusive of people with disabilities.
Ellie Van Velsen
Feb 8, 20242 min read
22 views
NP-C Corner: Will I be a lab rat? An exploration of clinical trials in the world of Niemann-Pick.
Ellie explores what clinical trials are and how they impact patients of Niemann-Pick diseases.
Ellie Van Velsen
Jan 8, 20243 min read
62 views
NP-C Corner: Storytelling DNA
Our DNA can tell us more information than you might think. As ‘the codebook for life’, it has many stories to tell. Your DNA can give us...
Ellie Van Velsen
Nov 8, 20233 min read
45 views
NP-C Corner: Exercise as medicine
There is a big misconception that the point of exercise is to lose weight. This is only one of many benefits exercises can have for our...
Ellie Van Velsen
Sep 8, 20232 min read
52 views
NP-C Corner: A History and Possible Future
A History and Possible Future: Explore its captivating history and glimpse into a hopeful future of Niemann-Pick. #NPC #Genetics #Research
Ellie Van Velsen
Aug 8, 20232 min read
68 views
NP-C Corner: Carrier Screening - What are your chances?
Ellie explores the definitions and impacts of how Niemann-Pick disease type C is inherited.
Ellie Van Velsen
Jul 3, 20232 min read
102 views
NP-C Corner – What did you inherit?
When I say the word “genetics”, what comes to mind? You may already be familiar with the word “gene” or maybe “DNA” but what do these...
Ellie Van Velsen
Apr 21, 20233 min read
88 views
NP-C Corner: Carer Health – You’re important too
I understand that a large portion of readers will be parents, carers, or family members of somebody with NP-C. Therefore, I don’t need to...
Ellie Van Velsen
Mar 19, 20233 min read
52 views
Welcome to NP-C Corner
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...
Ellie Van Velsen
Mar 5, 20232 min read
168 views