6 Weeks to Silver Ribbon Awareness Month 2025
Shining a Silver Light for Niemann-Pick Families
October is almost here — and with it comes our Silver Ribbon Awareness Month. This is when our community comes together to raise awareness for two rare but devastating conditions: Niemann-Pick disease type C (NP-C) and Acid Sphingomyelinase Deficiency (ASMD).
In this article:
Understanding NP-C
NP-C is a rare, progressive, and life-limiting neurological disease caused by the accumulation of lipids (fats) inside cells.It can appear at any age — from infancy to adulthood — and affects the brain, liver, spleen, and other organs.
On average, it still takes five years to receive a diagnosis. That’s why awareness is critical. Early recognition and intervention can make a difference in care and quality of life.
Learn more about NP-C ➜
Understanding ASMD
ASMD, formerly known as Niemann-Pick disease types A and B, is caused by a deficiency in the enzyme acid sphingomyelinase. This leads to the harmful build-up of sphingomyelin in multiple organs, including the lungs, liver, spleen, and brain.
The condition ranges from severe infantile forms to slower-progressing adult forms — but in every case, early detection and supportive care matter.
Learn more about ASMD ➜
This Year's Key Events
Throughout October, we’ll be bringing our community together with events, advocacy, and storytelling — including:
Charity Golf Day – Fri 3 Oct A day of friendly competition, community connection, and fundraising for research and family support. Registration is open now!
Wear Silver Day – Fri 17 Oct Australia goes silver to raise awareness for Niemann-Pick diseases.
Annual Poker Tournament – Sat 19 Oct Play for a purpose — with proceeds supporting ANPDF’s programs and research funding.
Lysosomal Storage Summit – 24–26 Oct Our Project Coordinator, Ellie, will present the Australian Care Guidelines for NPC. ANPDF will also host a booth to connect with researchers, clinicians, and global advocates.
Research in Australia
We are proud to work alongside two Australian research partners developing promising treatments:
The Florey Institute of Neuroscience and Mental Health – advancing research into therapeutic approaches for NPC.
Meizon Innovations – progressing pre-clinical development toward potential treatment options.
Your support this October helps sustain and accelerate this vital work.
What Would You Fund First?
If you had $1 million to invest in the Niemann-Pick community tomorrow, which area would you prioritise?
0%New Treatments: Developing therapies to slow or stop disease
0%Earlier Diagnosis: Creating faster, accurate testing methods
0%Family Support & Education: Expanding resources for all
0%Clinical Trials: Bringing therapies to patients sooner
We’ll share the results during Silver Ribbon Month and with our research partners — so they can see what matters most to our community.
How You Can Get Involved Now
You don’t have to wait until October — here’s how you can help today:
Save the Dates – Mark your calendar for our October events.
Join Our Mailing List – Be the first to hear about awareness month news and stories.
Download Our Toolkit – Share ready-to-go social media graphics and posters.
Spread the Word – Talk to friends, family, and colleagues about NPC and ASMD.
Together, let’s shine a silver light on NPD and make a difference!
Together, We Shine a Light
The silver awareness ribbon symbolises hope, unity, and determination for families impacted by Niemann-Pick diseases. By wearing it — and sharing its meaning — you help raise awareness, drive earlier diagnosis, and push research forward.
Let’s make October 2025 a turning point for NPC and ASMD awareness.
🎗 Join us — together, we shine a light.
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