IDIOPATHIC HYPERSOMNIA & NARCOLEPSY
10th APRIL 2022
Brisbane Convention & Exhibition Centre
The weekend of 9-10 April 2022 will become a hub for sleep medicine and education with the first ever FREE Sleep Health & Wellbeing Expo on Saturday 9th April followed by the Idiopathic Hypersomnia and Narcolepsy Education Day on Sunday 10th April at the Brisbane Convention and Exhibition Centre.
Researchers and clinicians in Australia receive very little or no education with regards to narcolepsy and disorders of hypersomnolence. This lack of knowledge and understanding has direct negative health outcomes for sufferers including delayed diagnosis and treatment. Our Education Day is a unique opportunity designed for medical and allied health care professionals, sufferers and their family and friends to learn more about these disorders from our invited speakers and from each other.
Professor Yves Dauvilliers MD, PhD
Yves Dauvilliers is Professor of Neurology and Physiology at the University of Montpellier, France. He obtained his MD in neurology in 2000 (Montpellier) and his PhD in neurosciences in 2004 (Montpellier). Since 2005, Prof Dauvilliers has been the Head of the clinical and research activity of the sleep laboratory at the University of Montpellier and the Director of the Sleep Disorders Centre, Department of Neurology, Gui de Chauliac Hospital, Montpellier. He is a member of the Clinical Research Department, University Hospital, Montpellier, of the scientific board of the University of Montpellier, and an associate coordinator of the Gui-de-Chauliac University Hospital. He is also a member of the research group INSERM U1061 and coordinator of the Sleep research axis. His research focuses on the diagnosis, epidemiology, pathophysiology and therapy of several sleep disorders, mainly neurological disorders including narcolepsy but also other central hypersomnias, parasomnias and restless legs syndrome (RLS).
He has been the Principal Investigator in several open and placebo-controlled national and multi-national clinical trials in sleep disorders on narcolepsy, hypersomnia, RLS, and insomnia. Since 2006, Prof Dauvilliers has been the coordinator of the French National Reference Network for Orphan Diseases (Narcolepsy, Hypersomnia, Kleine-Levin Syndrome). He is a member of the scientific board of the French Sleep Medicine and Research Society, the European Sleep Research Society, the European-Narcolepsy Network, the International REM sleep behavior study group, and the American Academy of Sleep Medicine (Co-chair of the Narcolepsy section). Prof Dauvilliers is also part of the Editorial Board of Sleep Medicine and Sleep and Specialty Chief Editor of Frontiers in Neurology – Sleep and Chronobiology. He is the author or co-author of more than 250 papers published in international and national peer-reviewed journals, several book chapters, and he also edited two French books related to sleep medicine.
1. What is Idiopathic Hypersomnia?
And how does it differ from Narcolepsy type 2 and Idiopathic Hypersomnia without long sleep.
2. Overview of current Idiopathic Hypersomnia and Narcolepsy research. Causes, diagnostics, and treatment.
*If Prof Dauvilliers is not able to enter the country (due to continued border closures) his presentations will be via video link.
Professor Ron Grunstein AM, MBBS MD PhD FRACP
Professor of Sleep Medicine and NHMRC Senior Principal Research Fellow.
Senior Specialist Physician, University of Sydney and Royal Prince Alfred Hospital.
Sleep and Circadian Group, Woolcock Institute of Medical Research.
Medical Advisor, Sleep Disorders Australia.
Professor Ron Grunstein has been a consultant physician in sleep disorders for over 30 years and a pioneer in improving patient care in sleep medicine in Australia and internationally.
He holds a Leadership Level 3 Investigator Award from the National Health and Medical Research Council 2021-25 and was previously a Senior Principal Research NHMRC Fellow and Professor of Sleep Medicine at the University of Sydney. He heads the Sleep and Circadian Research Group at the Woolcock Institute of Medical Research and is a Chief Investigator of two NHMRC Centres of Excellence.
Professor Grunstein has had a distinguished career in medicine domestically, being the first Staff Specialist appointed to a full time position in sleep medicine in Australia in 1988. He was awarded the Australasian Sleep Association Distinguished Achievement Award in 2010, and the Royal Prince Alfred Foundation Medal for Excellence in Medical Research in 2012. In 2014, he received the Distinguished Professor Award from the Sydney Medical School and in 2016 has been awarded the Thoracic Society of Australia and New Zealand Research Medal. On Australia Day, 2019, he was made a Member of the Order of Australia "For significant service to medical education and research in the field of sleep disorders". He is also recognised as a world leader in his field, having been the first person outside of North America to win the prestigious Nathaniel Kleitman Distinguishable Service Award from the American Academy of Sleep Medicine in 2011. From 2007-2011, Professor Grunstein served as President of the World Sleep Federation (now known as the World Sleep Society), the roof body for sleep researchers and clinicians internationally organising successful world congresses in Cairns and Kyoto.
Why is Australia so far behind the rest of the world. What can be done about it?
A/Prof Sutapa Mukherjee, MBBS, FRACP, PhD
Associate Professfor Sutapa Mukherjee is an internationally recognized authority on the epidemiology of sleep disordered breathing and the genetic epidemiology of obstructive sleep apnoea. She is a full-time clinician in respiratory and sleep medicine at SALHN and Associate Professor in Respiratory and Sleep Medicine at Flinders University. She is also Lead in Clinical Research for the Respiratory and Sleep Service, Southern Adelaide Local Health Network (SA Health).
She has a unique internationally recognized skill set based on excellent clinical skills; an ability to operationalize large cohort studies to collect high quality epidemiologic data; and strong leadership with a collaborative and inclusive approach. She has had a non-linear diverse research career in that the initial focus of her research as part of her PhD was lung malignancy, with an emphasis on novel treatment modalities such as gene therapy and immunotherapy in animal models and humans. Subsequently, she pursued postdoctoral work in occupational epidemiology whilst working at Harvard School of Public Health, Boston, USA from 1999-2003. She returned to Perth, Australia in 2003 and initiated and developed the WA Sleep Health Study - a clinical case series of over 5,000 patients with sleep apnoea. This cohort has led to key collaborations and publications, and a follow-up of the cohort was funded in 2017 by the NHMRC. She was also an investigator for the Sleep Apnoea and cardioVascular Endpoints (SAVE) trial, a landmark randomized clinical trial of CPAP therapy in moderate to severe sleep apnoea published in NEJM. She was Clinical Lead of the Ontario Health Study from 2010-2014; a major population-based cohort study of over 230,000 participants.
She is President-elect of the Australasian Sleep Association (and previously the Clinical Chair). She was elected to the position of Co-chair of the Guidelines Leadership Group of the National Covid-19 Clinical Evidence Taskforce in April 2020.
How do we increase access and availability of medications to treat central disorders of hypersomnolence in Australasia? Challenges and potential solutions.
During this talk Associate Professor Sutapa Mukherjee will review the regulatory bodies involved in new medication prescription and the processes to get medications subsidised and onto the government pharmaceutical benefits scheme. She will also review current obstacles to new medications being available in Australia and NZ and present potential solutions.
After helping to establish a Nonprofit organisation to support disadvantaged young women Michelle decided to dedicate her time to a cause closer to home and one, she could see was lacking some much needed attention. Michelle was diagnosed with Idiopathic Hypersomnia (IH) after first noticing symptoms when she was 11. Her journey to diagnosis took over 20 years. Post diagnosis she discovered that there was a lack of information, awareness and support for IH. It was typical for people to come away with a diagnosis but not much else. There was nowhere to direct family and friends so that they could better understand IH and the implications it has on quality of life. There were no support services available, no research being done in Australia and no PBS approved medications specifically for Idiopathic Hypersomnia. She also found that the medications that are available are often not overly effective and can even make the symptoms worse.
While there are many organisations that represent sleep and neurological disorders there were no organisations anywhere in the world that catered specifically to IH so Michelle set out to change that. At the beginning of 2013 she set up the world’s first Not for Profit organisation dedicated to Idiopathic Hypersomnia. At the time there were no records with regards to the number of people diagnosed with IH in Australia so to assist with research and education Michelle set up the Idiopathic Hypersomnia Patient Registry.
In the same year HA was established Michelle also created the Worldwide Idiopathic Hypersomnia Awareness Week (IHAW). The IHAW is an annual event that brings together people from all over the world. Since then, Michelle has also created Living with Idiopathic Hypersomnia online support groups in Australia/NZ, the USA, Canada, and the EMEA region (Europe/UK, Middle East, and Africa). These groups meet regularly via video and offer much needed peer support.
Michelle is a passionate sleep health advocate providing support and information for all sleep disorders so it made sense for her to join forces with Sleep Disorders Australia (SDA). In 2017 she joined SDA as a Director and is now SDA's National Chairperson. In 2020 her passion for sleep health lead her to create Australia’s first Sleep Health & Wellbeing Expo. The first expo will be held in Brisbane on 9th October 2021
Living with Idiopathic Hypersomnia
Michelle will share not only her own experience but also what she has learnt from the many, many hours she has spent listening to people living with IH all over the world. The goal of her talk is to help doctors and other allied health care professionals, and also family and friends of loved ones with IH get a better understanding of the challenges people with IH face so that they can hopefully provide the support people with IH need. She will be sharing her story and experiences in the hope of raising awareness and helping others navigate their way with Idiopathic Hypersomnia.
"Imagine anywhere, anytime, your body going completely limp and collapsing to the ground. You can’t move, speak, or open your eyes. You are conscious though and can hear everything around you. You fight back the tears as the feelings of humiliation, fear and frustration appear. You wonder how long this one will last. If a friend or family member is with you, it’s not so bad. If you are on your own, it’s a lot scarier. This is my life.”
Fiona is on a mission to wake up Australia! Born in Port Moresby Papua New Guinea, she moved to Brisbane Australia with her family when she was 15. A qualified counsellor with a passion for writing and running, she was diagnosed with narcolepsy with cataplexy shortly before her 47th birthday. A single parent of 16 years, full-time employee, and already juggling and receiving treatment for several medical conditions, Fiona was quietly confident in her ability to manage this incurable neurological disorder. She quickly learnt however, that living with narcolepsy would be her greatest challenge yet.
The impact of stigma on people with narcolepsy and other sleep disorders, and the delay in diagnosis from onset of symptoms, soon became apparent to Fiona. So too did the low awareness and understanding, even among health professionals. She desperately wanted others to understand the complexities of this medical condition, and the impact it was having on her life, but she was invisible, just like her symptoms. Unable to continue in her current employment and struggling to manage her narcolepsy symptoms (even with prescribed medication), she felt isolated and alone and became dangerously depressed.
Knowing she couldn’t expect things to change if she were not willing to be part of that change, Fiona knew she had to speak up. If not for herself, for others. She became an advocate for people with narcolepsy, sharing her own experiences with friends and family, on her social media accounts, participating in national and international awareness campaigns and had her story published on consumer health website, Everyday Health.
Towards the end of 2020 Fiona became a volunteer for Sleep Disorders Australia and now facilitates a Living with Narcolepsy Support Group through them. By sharing her story, she aims to increase public awareness, correct misperceptions, and help to bring this invisible illness into the light. When she’s not raising her voice for narcolepsy, Fiona can be found snail running on the trails, spending time with her children and grandchildren, reading inspirational autobiographies or writing.
Living with Narcolepsy with Cataplexy
Fiona has lived with narcolepsy with cataplexy for 4 1/2 years. In this time, she has learnt a lot about the condition, not only through her own experiences but also by listening to the experiences of others. In openly sharing her story, Fiona invites you into her world in the hope of bringing more understanding and compassion to those living with narcolepsy and to also emphasise the importance of individual treatment for those with sleep disorders rather than a one size fits all approach.
There will also be a Q&A session at the end of the presentations where you will have an opportunity to ask questions of our speakers.
Tickets for the Idiopathic Hypersomnia and Narcolepsy Education Day are on SALE NOW!
Tickets are limited so don't miss out, book now.
Tickets for in person attendance are $25 each
(includes morning tea, lunch and afternoon tea).
Online option and video $110
This includes the ability to watch the event live online. You will also receive a video of the event.
Please note both ticket options have been heavily subsidised. We do not receive funding or charge membership so we have made the ticket prices as cheap as we possibly could.
Hypersomnolence Australia Supporters are entitled to TWO FREE in person TICKETS each. They are also entitled to a reduced price on the online and video option (providing we have enough people who would like this option).
If you are a HA supporter you will receive an email with details about your free tickets. If you don't get an email please let us know.
Click here to find out more about our Hypersomnolence Australia Supporters Program
Please note: This event is not suitable for children. Our tickets are also limited and are therefore reserved for adults.
Make a weekend of it! As mentioned above there will be a FREE Sleep Health & Wellbeing Expo on Saturday 9th April (the day before the IH & Narcolepsy Education Day) that we are working on with Sleep Disorders Australia. The goal of the Expo is to spread the message of the importance of having all 4 pillars of health in balance.
In order to maintain a well-balanced, healthy lifestyle it’s important to give the same level of care and attention to 4 elements, known as “Pillars of Health”;
SLEEP HEALTH & WELLBEING EXPO
Saturday 9th April 2022
• Sleep • Mindset • Exercise • Nutrition
These four pillars are our foundation for good health. If one or more of these pillars are not in place it will have a negative impact on the others.
People with Idiopathic Hypersomnia get more than enough good quality sleep so they don't have a problem with the first pillar however because they need to sleep so much and the sleep is so deep it is easy for the other 3 pillars to suffer. While a good diet and exercise will not improve Idiopathic Hypersomnia, a poor diet and lack of exercise can definitely make Idiopathic Hypersomnia symptoms more difficult to manage. Another problem that many people with Idiopathic Hypersomnia have is managing the depression and anxiety that are common when trying to cope with a chronic illness.
So, even if you get enough good quality sleep if you are not getting enough exercise and you are not maintaining a balanced diet, and if your mindset is compromised it can set off a vicious cycle that can be hard to get out of and it can have a negative impact on your overall health and wellbeing. Come along for a whole weekend of information and education aimed to help you live your best life!
The Sleep Health & Wellbeing Expo is not only FREE you will be provided with morning tea, lunch and afternoon tea AND there will be free espresso coffee! While the Expo is FREE, you will need to register.
Registrations are now open. Click here to register.
Click here for more information about the Sleep Health & Wellbeing Expo.