In 2014 we successfully lobbied the TGA to get Sodium Oxybate rescheduled as a Schedule 8 drug instead of schedule 9 so that Xyrem can be accessed in Australia. My son has been taking Xyrem since February 2015 and it has been truly life changing. He has been able to get his learners permit, return to Uni and has a casual job..AMAZING! He no longer takes Effexor to control his cataplexy and has reduced his modafinil to just 100mg per day. He has more energy and has lost 25kgs too. He still naps once a day but we manage that around his uni and work schedule. His overall mood has improved too so it has been great to see the transformation in him.
We hosted a very successful patient conference on the Gold Coast in 2015 and brought out keynote speakers Dr Emmanual Mignot and Julie Flygare and had a full program over the weekend. We had 180 attendees from across Australia and was wonderful to see so many people with Narcolepsy meet each other, for some it was the first time they had ever met anyone else with Narcolepsy and I fell very blessed to have made that happen.
There has a been a fair bit of media attention lately thanks to some of our wonderful members and we truly appreciate their efforts in raising awareness of Narcolepsy, and we continue to host member meet ups in most states across Australia and has reached just under 1000 members nationwide.