If you are an FA patient we invite you to participate in the FA Global Patient Registry. This way you will be informed about opportunities to participate in clinical research studies and kept up-to-date on the progress of clinical trials.


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MEET NICK HEPPER

Adelaide’s Nick Hepper was a fit and active 16-year-old when he first noticed a loss of co-ordination in his legs. By the age of 21, and after several months of medical reviews and tests, he was diagnosed with FA.

At the time of his diagnosis, Nick was studying a Dual Diploma in Outdoor Recreation and Travel and Tourism, and enjoying his hobbies of bush walking, rock climbing and kayaking. Sadly, he was told to give up his dream of becoming an outdoor instructor, as his body was set for a decline in co- ordination, balance and eventually, life in a wheelchair. Nick had never heard of FA (the rare disease affects about one in 30,000 people in Australia and New Zealand) and was shattered by the news of what lay ahead.

In 2015, following surgery on his back to repair a bulging and torn disc, Nick was unable to walk properly for two months due to a loss of balance and required eight months of rehabilitation to gain control and strength back in his legs. It was during his rehab last year that Nick came up with the idea to trek the 1,200 kilometre isolated and at times rugged Heysen Trail through South Australia’s Flinders Ranges and fundraise for FA research.

After several months of training, Nick had a setback in November last year, undergoing surgery to fix an impingement in his right hip. His left hip is now also impinged and will require minor surgery.  Nick will also need regular cortisone injections in his lower back during the trek to reduce the chance of flare-ups, but he refuses to let this hinder him in any way.

His journey will kick off at Parachilna Gorge early in 2018 and is expected to end at Cape Jervis three months later. During the first 1,000 kilometres, he’ll have a support crew of one or two people (his Aunt, Mother and former TAFE Lecturer) – following in a support vehicle, helping set up camp, preparing food etc. Incredibly, Nick will complete the last 200 kilometres of his trek solo – without any supporters by his side, and with food drops left at pre-designated locations every few days.

 

“I just love the outdoors and the sense of being on my own, out in the elements, hitting the challenge face on.”

 

For the past year, Nick has been planning his Walking for Ataxia trek – training, researching the trail, organising logistics and saving money for his four-month journey. (Those who undertake the entire trail should be experienced hikers with navigation skills and self-reliant, particularly in regard to emergency first aid and possible weather hazards.)

After several months of training, Nick had a setback in November last year, undergoing surgery to fix an impingement in his right hip. His left hip is now also impinged and will require regular cortisone injections during his trek, but Nick refuses to let this hinder him in any way.

His journey will kick off at Parachilna Gorge on June 5 and is expected to end at Cape Jervis on September 18. During the first 1,000 kilometres, he’ll have a support crew of one or two people
(his Aunt, Mother and former TAFE Lecturer) – following in a support vehicle, helping set up camp, preparing food etc. Incredibly, Nick will complete the last 200 kilometres of his trek solo – without any supporters by his side, and with food drops left at pre-designated locations every few days.
 

www.walkingforataxia.com

www.fara.org.au

www.environment.sa.gov.au/parks/Visiting/Bushwalking/The_Heysen_Trail