October is a significant month for raising awareness about these rare and devastating conditions. We come together to shine a silver light on two critical disorders: Niemann-Pick disease type C (NP-C) and Acid Sphingomyelinase Deficiency (ASMD).
In this article:
Understanding NP-C
NP-C is a neurologically degenerative disorder characterised by the accumulation of lipids (fats) within cells. It affects both children and adults.
The average time to diagnose NP-C is five years, emphasizing the need for early detection and increased awareness.
Families dealing with NP-C face immense challenges as their loved ones gradually lose essential abilities
Understanding ASMD
ASMD, previously known as Niemann-Pick disease type A and B, is caused by a deficiency of the enzyme acid sphingomyelinase.
It leads to the accumulation of sphingomyelin in various organs, affecting the liver, spleen, lungs, and brain.
ASMD has a wide spectrum of severity, from early infantile forms (type A) to later-onset forms (type B).
Niemann-Pick Disease and the Silver Ribbon
The silver awareness ribbon represents solidarity with individuals and families impacted by NP. By wearing or displaying this ribbon, we raise awareness about NP and advocate for early detection, research, and support.
During Niemann-Pick Awareness Month, which takes place in October, we come together to educate others, promote understanding, and emphasize the urgent need for effective treatments and a cure.
How You Can Get Involved
Spread Awareness: Share information about NPD on social media using the hashtags #NPDawareness and #SilverLight. Encourage conversations and help others recognise the signs and symptoms.
Support Research: Consider donating to organisations like the Australian NPC Disease Foundation Inc (ANPDF), which funds critical research at The Florey Institute of Neuroscience and Mental Health. Research holds the key to finding effective treatments and ultimately a cure.
Participate: Attend NPD awareness events, engage in community activities, and stay informed about advancements in NP research.
Together, let’s shine a silver light on NPD and make a difference!
Join us to raise awareness🎗for NPC!
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