Celebrating 10 years as the world's first not for profit charity for Idiopathic Hypersomnia
Hypersomnolence Australia is celebrating 10 years as a Not for Profit Health Promotion Charity raising awareness, providing support, and advocating for Idiopathic Hypersomnia. To help us celebrate, scroll to the bottom to find out how you can win some great prizes!
Some of you may be surprised to know that just 10 years ago there were no organisations anywhere in the world that were dedicated specifically to Idiopathic Hypersomnia. Back in 2012, 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. There were organisations for other sleep disorders including narcolepsy, but these organisations did not have much if anything (like they may do now) relevant to Idiopathic Hypersomnia on their websites. Idiopathic Hypersomnia was quite literally invisible. We knew then (and it has since been proven) that Idiopathic Hypersomnia isn't Narcolepsy. We knew that Idiopathic Hypersomnia needed to be represented as the independent sleep disorder that it is, not tacked onto Narcolepsy organisations and initiatives. By the end of 2012, I had meetings with people in Australia and had many discussions with IH friends in the US and I decided I had to do something! I started the world's first Not for Profit organisation for Idiopathic Hypersomnia (IH). Hypersomnolence Australia (HA) was officially registered as a Not for Profit health Promotion Charity on 4th March 2013.
Looking back over all those years is very emotional. I honestly can’t believe I’ve made it this far. I’ve come across so many lovely, genuine people from all over the world. Their passion and enthusiasm to raise awareness, and their stories have all had a big impact on me and have guided me too. Particularly the stories, some have been uplifting and positive but many others have been terribly sad. Some have made me angry too hearing how people have been treated by doctors, family, and ‘friends’, and also, employers and others. To everyone living with IH - I admire your strength and determination to overcome challenges that are not associated with many other medical conditions.
Every year I say HA has come a long way but only those that know where IH was back in 2012 could completely appreciate just how far not only HA has come but how far IH has come. I’m very proud to have played a big part in that and I’m very thankful for all the people over the years in so many places around the world that have supported the work I do on behalf of HA, including the Worldwide Idiopathic Hypersomnia Awareness Week that I started in 2013 too.
Every year we take a step closer to better recognition and understanding of Idiopathic Hypersomnia. Some things have taken a little longer to achieve than others but I have come to appreciate that all organisations need time to grow and that with time comes valuable experience and knowledge. Hypersomnolence Australia was initially established to exclusively support Idiopathic Hypersomnia however we have come to realise that not everyone diagnosed with IH actually has IH. We also know that there are people that may have IH but who also have other problems (that they may or may not be aware of) that make managing their IH symptoms much more difficult.
HA has helped a number of people find a more appropriate cause/reason for their symptoms. Some of these people have even had a complete resolution of their symptoms. So not everyone that comes to HA has IH however many of them find their way to HA because there really isn’t a lot out there for people that experience excessive daytime sleepiness and hypersomnia.
HA is concerned with the standard of care that we see people with excessive daytime sleepiness and hypersomnolence receive so while our primary goal is to change the prognosis for people suffering from IH we are also determined to see improvements made with regard to the diagnosis, treatment, and care of people who suffer from all forms of excessive daytime sleepiness and hypersomnolence, regardless of the cause. Help us celebrate! HA is a not for profit charity that has never received funding and has never charged membership - I know, amazing we are still alive! We couldn’t have gotten to where we are without donations from our supporters. I would like to personally give something back in turn for that support. For every $5 donation from now until the end of this month (31st of March) you will get an entry into a draw to win some great prizes (eg: if you donate $20 you will get 4 entries in the draw). I have put together a self-care basket worth $125. There are some other great prizes too. There will be two prizes drawn at our April online Living with IH community group catch up. You can donate via our PayPal Giving Fund or via Direct Deposit to ANZ Bank BSB 014286 Account No. 210329584 in the name of Hypersomnolence Australia (please use your name as the reference). Email me at email@example.com or message me via Facebook after you donate to let me know so that I can put you in the draw. Don’t forget – the more you donate the more entries you will get in the draw AND because there are never very many donations your chance to win one of the two prizes is better than pretty much any prize draw ever!