Advocation, Education, Awareness and Support for Idiopathic Hypersomnia
Our primary purpose is to support the medical community work towards better treatment options and ultimately a cure for the neurological disease “Idiopathic Hypersomnia” (also referred to as Idiopathic Hypersomnolence). It is our goal to not just change the process to diagnosis but also the level of care and services available to patients post diagnosis.
- Set up and maintain a registry of people diagnosed with Idiopathic Hypersomnia that will be used with permission for aiding future research. The registry will also assist with information sharing within the Idiopathic Hypersomnia community;
Help to improve the level of education with regards to Idiopathic Hypersomnia within the medical community;
- Raise funds and provide support for clinical trials and research and to provide a link between researchers and Idiopathic Hypersomnia sufferers;
Increase public awareness of Idiopathic Hypersomnia to improve the support sufferers currently receive in general and within their own communities;
Advocate for the interests of people with Idiopathic Hypersomnia including but not limited to having effective medications made available and affordable and ensuring patients are not discriminated against in the workplace;
- Provide support and information to patients and their family and friends.
- Provide information, referrals and advocate for better management of sleep and general health*
- Host the annual International Idiopathic Hypersomnia Awareness Week
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. Therefore the work that we do is vital to not just people with Idiopathic Hypersomnia, but also to people with Narcolepsy, Sleep Apnea and other causes of 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.
After helping to establish a Nonprofit organisation to support disadvantaged young women Michelle Chadwick decided to dedicate her time to a cause closer to home. Michelle was diagnosed with Idiopathic Hypersomnia in late 2008 after struggling with the condition for more than 25 years. Unfortunately the diagnosis didn't provide any closure; in fact it only served to leave many questions unanswered. She found that without knowing a definite cause of Idiopathic Hypersomnia treatment is only symptomatic and is often not overly effective.
Michelle quickly discovered there was a lack of awareness and quality information available about Idiopathic Hypersomnia. She also found that there were no support services available to patients, no research being done and no approved
medications for Idiopathic Hypersomnia. When patients were diagnosed there was nowhere to direct family and friends to so that they could better understand the condition and the implications it has on quality of life.
While there are many organisations that represent various sleep disorders there were no organisations anywhere in the world that catered specifically to Idiopathic Hypersomnia. Michelle was inspired by a group of fellow Idiopathic Hypersomnia patients to change that. At the beginning of 2013 Michelle set up the world’s first Not for Profit organisation dedicated to Idiopathic Hypersomnia. Hypersomnolence Australia (HA) was registered as a Health Promotion Charity in March that year. HA is committed to being a strong advocacy, raising awareness and educating others about Idiopathic Hypersomnia. HA's goal is to change not just the process to diagnosis but also the level of care and services available to patients post diagnosis.
In September of 2013 Michelle launched the world’s first Awareness initiative. This was a month long event that is now recognised as the annual international Idiopathic Hypersomnia Awareness Week held every year during the first full week in September.
Hypersomnolence Australia has come a long way since it was established. We now work with a range of professionals to make sure our information is both helpful and informative. We receive advice and support from various medical health professionals in and outside of Australia and work with other sleep organisations to share valuable information and provide a link to our broader Idiopathic Hypersomnia community.
Join us at Hypersomnolence Australia