Last year, I noted that the recent attention on Idiopathic Hypersomnia and narcolepsy, both globally and in Australia, has been remarkable. I’m pleased to share that over the past 12 months, this attention has only continued to grow.
The Australasian Sleep DownUnder conference last year saw an unprecedented focus on central disorders of hypersomnolence (CDH), and I’m thrilled to report that this year’s conference featured even more activity and engagement around these typically neglected conditions.
Sleep DownUnder is the annual scientific meeting of the Australasian Sleep Association and the Australian and New Zealand Sleep Science Association. The conference was held on the Gold Coast, Qld from 16-19 October. The conference is aimed at sleep health professionals and researchers and serves as a platform for sharing the latest research, discussing advancements in sleep science, and exploring innovative practices in sleep medicine and management.
Over the past 12 years, I’ve had the privilege of attending Sleep DownUnder on several occasions in various roles—as an exhibitor, speaker, and attendee. These experiences have allowed me to connect and build meaningful relationships with researchers and clinicians. I've also had the unique opportunity to share my perspective as a speaker in symposiums, as well as through designated meetings and open discussions, fostering valuable exchanges of ideas.
People with lived experience bring a unique and vital perspective to discussions on sleep health. By sharing their firsthand insights, they help researchers and clinicians better understand the real-world impact of sleep disorders, which can guide more patient-centered care and research priorities.
While Sleep DownUnder is primarily designed for sleep medical professionals and researchers rather than individuals living with sleep disorders, I’ve found that it can be a valuable opportunity for these professionals to learn from the perspectives of those with lived experience. This inspired me to bring other advocates with me to the conference – and I am glad I did!
This year Hypersomnolence Australia gave three people from the Idiopathic Hypersomnia and Narcolepsy communities the opportunity to represent us as advocates with lived experience. Jana Chadd, Ellen Hayward and Jordan Leaney were chosen to attend by applying via our Sleep DownUnder - Hypersomnolence Australia Delegate Opportunity. You can read more about it here.
If you are interested in getting involved in advocacy and raising awareness you can join our Advocacy and Awareness Registry, more information here.
The next Sleep DownUnder conference will take place in Adelaide from October 9-11, 2025. We’re eager to once again invite advocates with lived experience to represent Hypersomnolence Australia at this important event. Please consider making a small donation to help us make this possible.
Michelle Chadwick
Read about Ellen's experience at Sleep DownUnder 2024:
I recently had the opportunity to represent Hypersomnolence Australia (HA) at the Sleep DownUnder 2024 conference. I’m incredibly grateful to Michelle and HA for their ongoing support, advocacy, and dedication to raising awareness and advancing understanding of Central Disorders of Hypersomnolence (CDoH).
The conference was packed with insights, but a standout session for me was on orexin agonist trials, which gave me a real sense of hope for the future. Hearing from experts like Dr. Julia Chapman on the latest research into orexin/hypocretin agonists was inspiring. It’s encouraging to see the possibility of treatments that could one day help people with hypersomnolence lead something closer to a normal life.
Another session that was unrelated to CoDH, but very fascinating, introduced the "SleepSync" app. Presented by Dr. Prerna Varma from Monash University, this app is tailored for shift workers. It uses circadian biology to provide personalised strategies that improve sleep, reduce fatigue, and enhance performance. Already, 70% of users report better sleep within four weeks, underscoring the potential of targeted digital tools to support those with unique sleep challenges.
Beyond the sessions, I was truly inspired by the dedication and respect that Michelle has earned among top physicians and researchers. It reminded me of the real impact one person can have when they’re committed to a cause. This experience has made me want to take a more active role in HA’s advocacy efforts. I’d encourage anyone considering involvement to take that step – whether it’s helping with a small task or simply spreading the word. Every contribution counts in making a lasting difference.
Thank you to everyone who made this experience unforgettable. A special thanks to Michelle, Jana, Jordan, and Aaron (Schokman), whose company and conversation added immense value to the experience. The week wrapped up with the incredible disco gala, leaving me invigorated and ready to keep advocating for those of us living with CDoH.
Ellen
Read about Jana's experience at Sleep DownUnder 2024:
I had the privilege of attending the Sleep DownUnder conference as an advocate with lived experience (N1), representing Hypersomnolence Australia (HA). It was a great experience to be exposed to a wide range of sleep-related topics, to learn about the latest research, and connect with fellow attendees.
The current clinical trials for Narcolepsy were very exciting to hear, I do hope in the not-too-distant future we will have better treatments for treating Narcolepsy and IH and that they will be available to us in Australia.
I found a study around pain in male vs female sleep deprived patients quite interesting, as I experience pain in the body as the sleepiness increases.
I also had some insightful conversations with representatives from Teva, the manufacturer of the medication I use for Narcolepsy. I shared my experience with the drug and highlighted some lesser-known side effects that weren’t listed in their official documentation. This led to an interesting discussion. Both individuals I spoke with had never actually interacted with a 'consumer' before. While this wasn’t surprising, as I understand there are different roles within the company and theirs doesn't typically involve direct contact with users, I do believe they are missing an opportunity by not engaging with people who have lived experience with their product, regardless of their department.
One thing that really stood out to me from the researchers and doctors who know Michelle well was their enthusiasm and excitement about her decision to bring a team with her to this year's Sleep DownUnder. They genuinely thought it was great and I believe they got as much out of conversing with us as we did talking to them.
There were discussions about the educational gap at the entry level for aspiring GPs, with the idea that addressing this could lead to better outcomes, earlier diagnoses, and more. One approach that I believe could have a significant impact is organizing roundtable discussions with patients who have lived experience. Their input would be invaluable in these conversations and would likely be highly beneficial for both doctors and researchers.
From the moment of my diagnosis, I have felt strongly that advocating for ourselves is crucial, not only for our own well-being but also for others in our community. I’m sure many of us are aware that there is a significant lack of education on all levels—among doctors, researchers, and within the wider community. People are often unaware of the profound impact sleep disorders can have on a person’s life and what those struggles truly look like. Advocacy, no matter how big or small, is essential and can make a real difference.
I feel so appreciative to Michelle for her continued amazing work within the sleep community and allowing me to be a part of this year’s Sleep Downunder conference as an advocate and patient with lived experience and representing HA. I promise you, our experience is important!
I encourage anyone who feels passionate about advocacy and its importance to step forward and contribute to supporting the sleep community in whatever way feels right to you. Getting involved with HA is an excellent place to start.
Overall, Sleep DownUnder 2024 has been a fantastic opportunity to deepen my understanding and connect with the sleep medicine community in meaningful ways.
Jana
A friendly reminder that Hypersomnolence Australia (HA) has operated for nearly 12 years without any external funding or membership fees. We’ve been sustained by the generosity of a small group of dedicated donors. If you’re able, please consider joining this incredible group of supporters. Every contribution, even as little as $5, makes a meaningful difference in helping us continue our work. Click here to donate via our PayPal Giving Fund. Or donate via Direct Deposit to our ANZ Bank Account: BSB 014286 Account No. 210329584
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