Awesome to see this collaboration between our organisations, Hypersomnolence Australia, and the Hypersomnia Foundation. We are excited for the future.
It was such an exciting time for me in Houston, Texas. I represented Hypersomnolence Australia (Aussies living with Idiopathic Hypersomnia & Narcolepsy) and the global Idiopathic Hypersomnia community with the Idiopathic Hypersomnia Awareness Week at the Hypersomnia Foundation’s #BeyondSleepy conference. I had the pleasure of meeting some of the awesome people I have known for many years online and I got to meet some incredible new people too. I come across few people that match my passion for IH advocacy and awareness but these people have been truly inspiring. These photos are just a sample of the people I’ve met so far. They are important because the Hypersomnia Foundation (which celebrates its 10th anniversary this year) wouldn’t exist without them. Top left; me and the Hypersomnia Foundation’s (HF) CEO Claire Wylds-Wright and COO Lindsay Bryant Jesteadt. Next, me with HF founding board members, Catherine Rye & Jennifer Beard. Bottom left, me with Dr David Rye. And then me with current HF board member and fellow long time IH advocate Diana Kimmel. Apart from the #BeyondSleepy conference, I participated in a 3 hour Narcolepsy and IH expert advisory panel with pharmaceutical company, Takeda today. And I’ve also met other pharmaceutical representatives. I will be continuing this over the next 2 days at #SLEEP2024 (the Associated Professional Sleep Societies conference). These meetings are important because Australia is just too far behind the rest of the world with regard to treatment options for narcolepsy and IH which is rather disappointing considering drug companies trial their drugs here, then don’t bother to register them/get them approved. #IdiopathicHypersomnia #ThisIsIH