Delegate: Dianne (Di) Spillane
Affiliation: Living With Narcolepsy in Australia, PWN4PWN
Short Bio: After receiving a late narcolepsy diagnosis at the age of 49, Di Spillane decided to actively raise narcolepsy awareness in the hope
that by sharing parts of her journey to diagnosis, it would reach another who was experiencing similar symptoms and was looking for an answer.
She began by writing a blog about her journey that she shared on her Waking Up Tired website https://wakinguptiredcom.wordpress.com/
as well as sharing it on her public Waking Up Tired Facebook page.
Di has joined various Facebook narcolepsy groups since 2017, and has been actively involved in any narcolepsy awareness opportunities
that she heard about via those groups.
She also released a narcolepsy related original song (The Underground Railroad) https://youtu.be/Gcnj0xiWBcQ on World Narcolepsy Day in 2022, which was streamed over 3000 times on Spotify within the first month of being released, by people all over the world!
In 2023 she created the private Living With Narcolepsy in Australia Facebook Group to help others LWN to be able to source factual information, as well as keeping group members up to date with relevant information such as narcolepsy trials, awareness opportunities, etc.
Di also spent a few months as a Central Disorders of Hypersomnolence Forum member. During that time she assisted with creating narcolepsy information brochures, facilitating and presenting topics of discussion for the monthly Living With Narcolepsy online Support Group, and organizing the 2023 World Narcolepsy Day awareness campaign by creating videos that she narrated to make them suitable for sharing on social media platforms including YouTube.
Since resigning from the CDH forum, Di has continued assisting the narcolepsy community, and has recently become involved with PWN4PWN, helping them by creating materials that can be shared on their various social media platforms and website.
Activity: This is Di’s first year as a World Sleep Day delegate. Di invited the Living With Narcolepsy in Australia group to participate in this awareness campaign. She has written questions based on this year’s theme ‘Sleep Equity for Global Health’, using the responses received to create a series of awareness videos that will be released every day on the Waking Up Tired Facebook page https://www.facebook.com/WakingUpTiredBlog from Sunday the 10th of March through to World Sleep Day, Friday the 15th of March.
By releasing the videos on this public Facebook page, Di hopes that as many people as possible will assist by sharing them with their family and friends. Sleep equity is a major concern for people who live with narcolepsy and IH in Australia, and by raising awareness we hope to see positive changes in the not too distant future.
Di has been invited to be the guest speaker at the upcoming NODDS online meeting on the 18th of March, during which she will share the World Sleep Day videos and discuss Sleep Equity.
For PWN4PWN, Di has invited all group members to write a sleep equity related story that will be available to read on the PWN4PWN website. for this year’s World Narcolepsy Day.
Location: Adelaide, South Australia
Date of Activity: 10th of March to the 18th of March
Submitted by: Di Spillane
