Let's Help Aaron
Donation protected
Aaron Schokman is a smart, well spoken, energetic 24 year old man who suffers from a severe case of narcolepsy and cataplexy.
Narcolepsy is an auto immune disease that effects the regulation of the sleep cycle. Cataplexy can cause instant paralysis without prior warning. These rare conditions prevent Aaron from being able to enter REM sleep, taking a severe toll on his physical and emotional wellbeing.
Regardless Aaron maintains a positive attitude and is currently undertaking a postgraduate degree in the hope of completing a PhD in cataplexy. His goal is to become a Sleep Specialist so he can help other people with his debilitating condition.
The good news for Aaron is a treatment does exist for his condition – a medicine called Xyrem. The bad news is that Xyrem is very expensive and the manufacturer has not yet applied to have it registered by the Therapeutic Goods Administration, which is compulsory before the Federal Government can consider offering subsidised access.
The distributor of Xyrem has made the medicine freely available to Aaron on a three month compassionate access program. This medicine has changed Aaron’s life. In early March he wrote to me:
“I've been approved and am on my second night of the drug and it is beyond anything I could have imagined. Narcolepsy prevents people from having the deep REM sleep our brains and bodies need to recoup and regenerate so imagine not sleeping properly for four years and all of a sudden being able to actually have 8 hours of sleep is pure relief.” – Aaron Schokman
Unfortunately the compassionate access program finishes in a few weeks times and Aaron is genuinely fearful of returning to his old condition and a reliance on anti-depressant medication just to make it through the day.
As Aaron’s Federal Member of Parliament I am working with the Health Minister to find ways to improve the process to fast track public access to medicines like Xyrem. There are an estimated 8000 narcolepsy sufferers in Australia whose lives would be changed through access to this medicine.
Meantime we need to raise money now to help Aaron remain on Xyrem. $66 will give Aaron one day’s worth of medicine. $462 will give him an extra week. Your generosity will be greatly appreciated.
Narcolepsy is an auto immune disease that effects the regulation of the sleep cycle. Cataplexy can cause instant paralysis without prior warning. These rare conditions prevent Aaron from being able to enter REM sleep, taking a severe toll on his physical and emotional wellbeing.
Regardless Aaron maintains a positive attitude and is currently undertaking a postgraduate degree in the hope of completing a PhD in cataplexy. His goal is to become a Sleep Specialist so he can help other people with his debilitating condition.
The good news for Aaron is a treatment does exist for his condition – a medicine called Xyrem. The bad news is that Xyrem is very expensive and the manufacturer has not yet applied to have it registered by the Therapeutic Goods Administration, which is compulsory before the Federal Government can consider offering subsidised access.
The distributor of Xyrem has made the medicine freely available to Aaron on a three month compassionate access program. This medicine has changed Aaron’s life. In early March he wrote to me:
“I've been approved and am on my second night of the drug and it is beyond anything I could have imagined. Narcolepsy prevents people from having the deep REM sleep our brains and bodies need to recoup and regenerate so imagine not sleeping properly for four years and all of a sudden being able to actually have 8 hours of sleep is pure relief.” – Aaron Schokman
Unfortunately the compassionate access program finishes in a few weeks times and Aaron is genuinely fearful of returning to his old condition and a reliance on anti-depressant medication just to make it through the day.
As Aaron’s Federal Member of Parliament I am working with the Health Minister to find ways to improve the process to fast track public access to medicines like Xyrem. There are an estimated 8000 narcolepsy sufferers in Australia whose lives would be changed through access to this medicine.
Meantime we need to raise money now to help Aaron remain on Xyrem. $66 will give Aaron one day’s worth of medicine. $462 will give him an extra week. Your generosity will be greatly appreciated.
Organizer
John Alexander
Organizer
Epping NSW
