Narcolepsy is a chronic neurological auto immune disease affecting the sleep centre of the brain. Symptoms can include excessive daytime sleepiness, disrupted night time sleep, sleep paralysis, hypnagogic hallucinations, extreme sleep deprivation, memory loss, confusion, lack of concentration, brain fog, and cataplexy - the sudden loss of muscle control triggered by intense emotions. The symptoms and level of severity varies from person to person. It affects the ability to work, to socialise, and to live a full life.
About 3 years ago Briony was diagnosed with narcolepsy. "If you have met me, or anyone else suffering with this condition, you may not realise the impact it has. I put on my game face for the world, but I always pay for it later. Severely limiting my capacity for concentration, I've had to give up my PhD and full time work. But I still consider myself lucky, as there are many others much worse off. Best of all, it has not disabled me physically, so I want to make the most of that."
This year Briony will Hike the Heysen Trail solo - a 1200km trail from Cape Jervis to Parachilna in the Flinders Ranges, South Australia. She will hike through some of South Australia's most beautiful and toughest terrain, carrying all she needs to camp out each night along the way. With weekly resupply food drops, it will take between 60-70 days to complete.
The aim of this challenge is to increase awareness of narcolepsy and contribute to Narcolepsy Support Australia to help advance treatment options to Australians with the condition.
Narcolepsy is a rare condition that has no cure. Medication for narcolepsy is specific to the condition and as such, does not get a lot of attention. Narcolepsy Support Australia work tirelessly with researchers in the USA, and lobbying the Australian Government to make these treatments accessible in Australia.
A lot more research is needed to understand and treat narcolepsy. While medication can reduce some symptoms, the current available treatments are not sufficient to provide a "normal" life for most sufferers. Medication can sometimes help with the secondary symptoms but often loses efficacy after a short time and can come with many negative side effects. One of the most effective treatments has recently become legal in Australia, however at nearly $2000 a month, it is still unobtainable for the majority of sufferers.
Where your donation will go
Funds raised will primarily go to Narcolepsy Support Australia. 10% of funds raised will go to the Friends of the Heysen, and a maximum of 20% will go towards costs on the trail (campsite fees, resupply costs, gear replacement, etc.)
Narcolepsy Support Australia began in 2012 with a mother desperately seeking support and answers for her newly diagnosed son. It is a grass roots organisation, which has since created a hugely successful and supportive online community. Narcolepsy Support Australia have successfully lobbied the Australian Federal Government for the trial and legalisation of Xyrem (the $2000 a month medication) in Australia. However there is still much work to be done: getting Xyrem added to the PBS scheme so that it is an affordable option, and going through a similar process of trailing and legalising for a new medication which is being developed in the US right now.
The Friends of the Heysen are a not-for-profit organisation who maintain the Heysen Trail. They run regular walking programs catering to walkers of all levels, as well as on-going maintenance programs including the installation of water tanks for hikers in the northern outback section, making a continuous hike possible.
How to stay in touch
If you'd like to stay up to date with Plan B's progress, ask any questions or give a shout of encouragement, you can find her online:
Short Walker - $25
You'll receive a public thank you across social media via posts or videos.
Day Hiker - $50
Witness the beauty of South Australia from home, with a hi-res digital copy of one of Plan B's best panoramic photos.
Section Hiker - $100
They say that nature is the best medicine, and even if you can’t be there, you can receive some of the best views to enjoy from the comforts of home. Briony will be walking through some of the most scenic places in South Australia. You will receive a full set of hi-res digital photos of her best panoramic photos.
Thru Hiker - $500
Want to come along for the hike, but don’t have the time? You can send your business' logo along as a rucksack or hat patch and be front and centre in Briony’s update videos.
Trail Angel - $1000
An ultimate Champion of the Cause, your business logo and description will be promoted through all of Briony’s pages, announcements, emails and videos.