Celebrating 6 years raising awareness and advocating for Idiopathic Hypersomnia
Hypersomnolence Australia is celebrating 6 years as a Not for Profit Health Promotion Charity raising awareness and advocating for Idiopathic Hypersomnia.
It all started with me talking to a small group of other people with Idiopathic
Hypersomnia in Australia and the US about the need for an organisation that represents Idiopathic Hypersomnia. There were no organisations anywhere in the world that represented Idiopathic Hypersomnia and that bothered us. There were organisations for other sleep disorders including narcolepsy, but we knew then (and it has since been proven) that Idiopathic Hypersomnia isn't Narcolepsy. We needed Idiopathic Hypersomnia to be represented as the independent sleep disorder that it is, not tacked onto Narcolepsy organisations and initiatives. There was almost no information online about Idiopathic Hypersomnia apart from studies in medical journals (many of which were behind paywalls). When patients were diagnosed with Idiopathic Hypersomnia there was nowhere for them to go for information so that they could better understand the condition and the implications it has on quality of life. There was nowhere for them to direct family and friends to either which made explaining it to others very difficult. After meetings with people in Brisbane and Melbourne in 2012 I decided I had to do something so I started the first Not for Profit organisation in the world for Idiopathic Hypersomnia. Hypersomnolence Australia was officially registered as a Not for Profit health Promotion Charity on 4th March 2013. Every year we take a step closer to better recognition and understanding of Idiopathic Hypersomnia. This year, on 11th February we took the biggest step to date. As the Executive Director of Hypersomnolence Australia and Director of Sleep Disorders Australia, I was invited to a public hearing that was held at Parliament House, Canberra to give an opening statem