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In the media: 'Creating community while in search of a cure'
"Smart thinker: Creating community while in search of a cure" - By Elli Jacobs (MiNDFOOD), Sunday March 17, 2022. Read the full article...
ANPDF
Apr 2, 20242 min read
89 views
In the media: Vertigo drug could be used to treat Niemann-Pick type C disease, known as ‘childhood Alzheimer’s’
By Sarah Booth (Herald Sun), March 10, 2024. Read the full article here. Melbourne, Victoria – In a significant medical breakthrough,...
ANPDF
Mar 9, 20242 min read
2 views
Childhood Dementia Initiative End of Year Report | February 8, 2024
The Childhood Dementia Initiative (CDI) has made significant progress in 2023, thanks to the dedication of its partners and supporters....
ANPDF
Feb 9, 20241 min read
9 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
In Honour of Mala Singh, 45yo, NP-C
25th May 1978 to 4th February 2024 We are deeply saddened to announce the passing of Mala Singh, a beloved member of our community, who...
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Feb 4, 20241 min read
135 views
Zevra Therapeutics Media Release | January 8, 2024
Zevra Therapeutics Receives FDA Acceptance Of Resubmission Of NDA For Arimoclomol As A Treatment For Niemann-Pick Disease Type C Read the...
ANPDF
Jan 9, 20241 min read
16 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
Meet and Greet with Cyclo Therapeutics
The Australian NPC Disease Foundation hosted a meet and greet with Cyclo Therapeutics on Zoom on 12th December.
ANPDF
Dec 13, 20231 min read
14 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
Happy NP-C Month! Niemann-Pick Awareness Month is Coming.
October is Niemann-Pick disease type C Month to raise awareness for those living with and dying from NP-C.
ANPDF
Sep 15, 20232 min read
98 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
2023 NPC Conference: A Beacon of Hope for Niemann-Pick Disease in Australia
The Australian NPC Disease Foundation hosted an inspiring event this year, the 2023 NPC Conference, which took place at the prestigious...
ANPDF
Jul 1, 20232 min read
5 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
In honour of Will Swanson, 6yo, NP-C
20th January 2017 to 5th February 2023 The Australian NPC Community share their hearts and condolences with the Melbourne-based family of...
ANPDF
Feb 6, 20231 min read
195 views
10 Sugar-Free Recipes for Christmas Treats
Join the sweet side of holiday cheer with these recipes! Some of our NPC Warriors are able to take a treatment to help delay the onset of...
ANPDF
Dec 19, 20221 min read
108 views
Diagnosis Day - Full series out now
A seven-episode series following Aussies with rare genetic conditions, as they search for answers, options and community. This year, one...
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Dec 13, 20221 min read
69 views