DEBRA Australia administrator Sue McKenna says she and other officials are personally affected by EB as they have or had a child with EB.
EB is a rare skin disease where the skin blisters and peels at the slightest touch. Living with EB has been likened to living with third-degree burns. It is very painful, and sufferers must be bandaged every day with dressings to protect and medicate their wounds.
The skin becomes as fragile as a butterfly, so children with the disease are called “butterfly children”. Watch the video below for more information.
This year’s Ride is from May 24 to June 7, taking riders to places from Alice Springs to Broome and back, taking in the Bungle Bungles, The Kimberley and the 40th anniversary Finke Desert Race. Ride numbers are capped at 20.
The ride fee is $3750 plus a donation of $1200 to DEBRA Australia for the national EB Nurse Program. The cost covers all the aspects of the ride such as fuel, camping fees, accommodation, meals and sightseeing events.
Sue says the donation can be fundraised by the rider by various means with the assistance of DEBRA. “We raised nearly $40,000 last year and are hoping to reach the same target this year.”
Sue says if any incident happens on the ride, a medic or sweep vehicle will attend to riders.
“Support vehicles will be heading out from Brisbane way and we can help get any local bikes out there and back with riders which to fly in and out,” she says.
They will also have a professional volunteer photographer along to compile a complimentary EBCC DVD and there will be a book and photos that can be purchased after the ride.
In 2016, the ride will head from the Hunter Valley to the Victorian High Country.