MICHELLE CHADWICK
Founder/Director
Hypersomnolence Australia and Idiopathic Hypersomnia Awareness Week®

Director - Sleep Disorders Australia

ABOUT US

Our purpose:

Our primary purpose is to support the medical community work towards a better understanding of Idiopathic Hypersomnia, effective treatment options, and identifying biomarkers that will lead to more appropriate diagnostic tools and ultimately a cure for Idiopathic Hypersomnia. We are committed to being a strong advocacy, raising awareness and educating others about Idiopathic Hypersomnia. Our goal is to not just change the process to diagnosis but also the level of care and services available to patients post diagnosis. 

 

What we do:  

  • Maintain a registry of people diagnosed with Idiopathic Hypersomnia that is used with permission for aiding research and education. This is the only patient database in Australia of people diagnosed with Idiopathic Hypersomnia. If you have been diagnosed with Idiopathic Hypersomnia in Australia you can help us do that by completing our patient survey
     

  • Help to improve the level of education with regards to Idiopathic Hypersomnia within the medical community.
     

  • Increase public awareness and education of Idiopathic Hypersomnia.
     

  • Advocate for the interests of people with Idiopathic Hypersomnia.
     

  • Provide support and information to patients and their family and friends.
     

  • Provide information, referrals and advocate for better management of sleep and general health.
     

  • Provide information and support for clinical trials and research. HA's Director Michelle Chadwick participates as a consumer health advocate and patient representative on clinical trial networks and other health related committees.
     

  • Provide support and information to research centres and the Australasian Sleep Association on clinical trials and policy matters.
     

  • Provide public and private sleep clinics and sleep specialists information brochures for patients and the public.
     

  • Host and promote the annual International Idiopathic Hypersomnia Awareness Week.
     

  • Participation in awareness initiatives including World Sleep Day, Sleep Awareness Week and other relevant awareness events.
     

  • Our website is kept up to date with relevant information including a news blog that people can subscribe to.
     

  • Social Media channels including Facebook , Twitter , Instagram and Pinterest.
     

  • Hypersomnolence Australia's director, Michelle Chadwick is also on the Board of Director's of Sleep Disorders Australia (SDA) so we work with SDA to provide support and information to not just people with Idiopathic Hypersomnia, but also to people with Narcolepsy, Sleep Apnea and other causes of excessive daytime sleepiness and hypersomnia. 

Organisation Overview:

Hypersomnolence Australia is a non-profit organisation that relies on donations and fundraising to help fund our basic programs. No fees for membership are currently charged. Our small staff work on an unpaid volunteer basis. Hypersomnolence Australia provides support and information to medical professionals and people diagnosed with Idiopathic Hypersomnia as well as their family and friends. We also assist people who suspect that they may have Idiopathic Hypersomnia or Narcolepsy find the right medical professionals so that they can receive proper treatment including appropriate testing and correct diagnosis.

Hypersomnolence Australia was initially established to exclusively support Idiopathic Hypersomnia however we have come to realise that not everyone diagnosed with Idiopathic Hypersomnia actually has Idiopathic Hypersomnia. We also know that there are people that may have Idiopathic Hypersomnia but who also have other problems (that they may or may not be aware of) that make managing their Idiopathic Hypersomnia symptoms much more difficult. We know this because we have many people from all over the world contact us that are desperate for help and we have helped a number of them find the “right” diagnosis and the “right” treatment options for their situation. Not all of them have Idiopathic Hypersomnia however many of them find their way to Hypersomnolence Australia looking for advice and support because there really isn’t a lot out there for people that experience excessive daytime sleepiness and hypersomnia. 


Hypersomnolence Australia are concerned at the standard of care that we see patients with excessive daytime sleepiness and hypersomnia receive so while our primary goal is to change the prognosis for people suffering from idiopathic hypersomnia we are also determined to see improvements made with regards to the diagnosis, treatment and care of patients who suffer from all forms of excessive daytime sleepiness and hypersomnia, regardless of the cause.  

 

If you are a radio station looking for a community service announcement please feel free to use ours. If you do use it please let us know at

info@hypersomnolenceaustralia.org.au so that we can give your radio station a shout out on our social media to say thanks.