"Riding Around Australia" for Ehlers-Danlos Syndrome

“Riding Around Australia” for Ehlers-Danlos Syndrome

EDSer Claire Healey is riding her motorcycle around Australia in 35 days. During this fundraising effort, she will increase awareness by discussing EDS at every stop! The funds she raises will go to the ConnecTeD Foundation.

By: Matt Carr

“CLAIRE Healey will cover thousands of miles around Australia in a bid to help others battling the condition that has given her thousands of dislocated joints.

Leaving Sydney on September 1, the Ride Around Australia for Ehlers Danlos Syndrome organiser and leader will circumnavigate the country in 35 days to raise money and awareness. Ms Healey, a Sydney-based information technology executive, will pass through the Hunter on her first day with her support team, which includes her father, prominent Newcastle barrister Terry Healey.

Ehlers Danlos Syndrome is a genetic condition that creates faulty collagen and leaves her joints unstable and fragile, among other symptoms.

Undergoing seven shoulder reconstructions and other microsurgeries, Ms Healey said there was no cure for the degenerative condition.

“There’s only so many times they can reconstruct a joint,” she said. “There will come a time when I will be in a wheelchair.”

Keen on motorcycles since a young age, Ms Healey said the sport helped her escape.

“It allows me to have a sense of freedom and an outlet that otherwise I wouldn’t have,” she said.

As well as her financial goal, Ms Healey said she was aiming to discuss the disease at each of her stops and widen awareness around the country.

All money raised will go towards the ConnecTeD Foundation which runs a specialist clinic at Westmead’s Children Hospital and hopes to expand to support teenagers in their transition from children’s wards to the general health system.”