Delegate: Di Spillane
Delegate Short Bio: Di Spillane has lived with narcolepsy since childhood, although she wasn’t diagnosed until the age of 49. For decades, she experienced profound exhaustion and excessive daytime sleepiness without understanding that this was not normal.
Following years of misdiagnoses and extensive medical investigations, Di was finally diagnosed with narcolepsy type 1 in 2017.
Being diagnosed later in life has shaped a strong commitment to self‑advocacy and better care for people living with narcolepsy in Australia. She created an online blog and Facebook page called Waking Up Tired to share her journey as well as raise narcolepsy awareness.
A private Facebook group Living With Narcolepsy In Australia to create a supportive and informative space for people who have been diagnosed with narcolepsy and their careers.
In September 2025, Di released a limited episode podcast series called Waking Up – Narcolepsy Symptoms Explained.
Di is passionate about raising awareness of narcolepsy, improving the information provided at diagnosis, and advocating for better long‑term support for the Australian narcolepsy community.
Scope of Activity: Individual activity
Activity: Healthy sleep is essential for students to learn, connect, and thrive. Unfortunately, some students are unable to sleep well or wake feeling refreshed, even when they practice good sleep hygiene habits.
Having struggled in the school environment myself due to undiagnosed narcolepsy symptoms that affected me on a daily basis, I decided to focus on raising awareness of narcolepsy within educational settings for this year’s World Sleep day activity.
To support this goal, I created a brochure for schools that provides clear, accessible information about narcolepsy symptoms, along with links to credible, evidence-based sources where educators can learn more about narcolepsy and other sleep disorders.
The brochure has been shared via my website, my Waking Up Tired Facebook page, the Living With Narcolepsy in Australia Facebook community, and several narcolepsy-focused Facebook groups of which I am a member.
This has enabled individuals and families to share the resource with their local schools and education communities.
In addition, I had the opportunity to discuss this resource in the lead-up to World Sleep Day during a Consumer Health Forum of Australia webinar, where I participated as an invited guest speaker.
Location: South Australia
Date of Activity: 13/3/2026
