Catch up on the latest NEWS - November 2023
The recent attention on Idiopathic Hypersomnia, both globally and in Australia, has been remarkable. Particularly in Australia, there was an unprecedented level of activity surrounding central disorders of hypersomnolence (CDH) at the Australasian Sleep DownUnder conference. 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 in Adelaide this year from 8-11 November.
I had the privilege of being invited to give a presentation at a symposium titled "Living with Narcolepsy and Idiopathic Hypersomnia in Australia." While I have participated in Sleep DownUnder conferences as a speaker and in panel discussions in the past, this was the first time a symposium specifically focused on Idiopathic Hypersomnia was included. The symposium drew significant interest, with standing room only, which is not common for most symposiums. Notably, there was active participation from pediatric physicians, which was encouraging to witness.
At the end of the symposium I had handouts for the attendees. The handout 'Diagnosis to Aftercare - Practical advice for treating doctors of patients with Narcolepsy & Idiopathic Hypersomnia emphasising patient support and medication management.' has also been sent via email to all of the physicians on our database. You can see the handout here. and download a copy here.
The Living with Narcolepsy and Idiopathic Hypersomnia Symposium team, Sleep DownUnder 2023.
From left - Dr Aaron Schokman (researcher)*, Dr Elizabeth Cayanan (researcher)*, Dr Sheila Sivam (clinician/researcher)*, Dr Claire Ellender (clinician/researcher Qld), Michelle Chadwick, Dr Chris Kosky (clinician/researcher WA), Dr Simon Frenkel (clinician Vic), Prof Brendon Yee (clinician/researcher)*
*Sydney University and the Woolcock Institute in Sydney. The conference also featured poster presentations and research updates on central disorders of hypersomnolence. One of the highlights was the presentation of a research paper titled "Insights from a 10-year Australasian Idiopathic Hypersomnia Consumer Data Registry Study," which I have been collaborating on with researchers. It was a surreal and proud moment to see 10 years of my data collection being showcased at Sleep DownUnder. Kudos to Jack Anderson and all the other researchers who have played a crucial role in making this achievement possible. The paper has not been published as yet, however, I will certainly let you all know when it is.
When I first started Hypersomnolence Australia (HA) it was a goal of mine to get researchers in Australia interested in learning about and studying Idiopathic Hypersomnia (IH). It seemed an impossible task because at the time IH was literally invisible in Australia (it wasn’t very visible anywhere in the world) but I knew to achieve that goal I needed to start collecting data. I also needed to establish relationships with researchers (that’s been an interesting journey in itself).
Fast forward to the present time and here we are. Jack has been encouraged to continue to study IH and the other authors on our paper are all currently involved in one study or another involving IH (aside from this one).”
Note: the data in this study has come from Hypersomnolence Australia’s patient registry and other surveys we have done.
There are a few reasons why the information HA collects is so important. This is one of them.
We hold the only patient registry of people diagnosed with IH in Australia. If you haven’t registered, please consider doing so. Learn more here.
On the 8th November we announced Illuminate Hypersomnia. The initiative brings together members of the global IH community to shine a light on all the ways that IH affects your life and what matters most to you in terms of effectively treating IH. Hypersomnolence Australia is partnering with the Sleep Consortium and organisations around the world to reach as many people affected by IH as possible – individuals living with IH, their care partners and family members, and those who advocate on their behalf. Together we are inviting members of the IH community to participate in a series of opportunities to inform and shape development of treatments for IH. Learn more here.
This month’s Living with IH community catch up was held on 15th November.
Topic: LIFE AFTER DIAGNOSIS - Insights into how to live your best life.
This was part one of a two-part presentation and discussion on ‘Improving overall health and wellbeing and how that can have a positive impact on managing IH symptoms. Learn more here (includes a link to the words of the presentation and the slides for those of you who missed it).
Part two of this series will be on Wednesday 17th January at 6.30pm AEST.
If I don't see you before Christmas, I'd like to wish you all a very Merry Christmas filled with love, laughter and time spent with those that matter most. As we bid farewell to the old year and welcome the new one, may it be filled with hope, happiness, and good health. I would also like to express my appreciation and gratitude to everyone who has supported Hypersomnolence Australia and me this year.
Special thank you to Amanda Vernon, Tiffany Townsend, Ellen Hayward and Vicki O'Brien. I couldn't do what I do without you.
A gentle reminder that Hypersomnolence Australia (HA) has never received funding and we do not charge membership. HA has survived for nearly 11 years through the support of a very small number of donors. Please consider being one of those awesome people. It doesn’t have to be much, even $5 will help make a difference. Click on the button below to donate via our PayPal Giving Fund. Or click here for more ways to donate.
Hypersomnolence Australia is a registered Not for Profit Health Promotion Charity. All donations over $2 are tax deductible The Trustee for Hypersomnolence Australia is endorsed as a Deductible Gift Recipient (DGR) from 01 Jul 2013. It is covered by Item 1 of the table in section 30-15 of the Income Tax Assessment Act 1997 - ABN: 19662120