A STAGGERING $60,000 was raised for the EB Research Foundation at the recent Tough Tilly Day fundraiser in Echuca.
Held at the American Hotel, the event raised money for research into epidermolysis bullosa (EB), a rare skin condition found in only 1300 people in Australia.
And it was all in the name of Tilly Wilkes, a brave little girl with the condition who has inspired many people to fight for change.
“We were blown away, we raised a lot more than we were expecting. We more than doubled last year’s fundraising,” Rory Brockwell, a relative of Tilly’s and an activist for the EB Research Foundation, said.
‘‘We had a great contribution from The American Hotel, while free style motor cross rider Cam Sinclair, Murray River Paddlesteamers and Brett Sands Watersports also contributed to the auction items. It was our biggest auction yet.
‘‘Dean (Oberin) and the whole crew at The American Hotel were faultless with their efforts. They did an amazing job facilitating the day.’’
Mr Brockwell also thanked rocker Reece Mastin for taking to the stage on the day to deliver another show-stopping performance. ‘‘He donated his time and is on board with us and the EB Research Foundation,’’ he said. “We’re already looking forward to Tough Tilly Day 2020.’’
EB is a group of life-threatening skin conditions affecting individuals from birth.
A person born with the condition lacks a critical protein that binds the layers of skin together. Without this protein friction blisters are formed, the skin tears apart and sheers off leading to severe pain, disfigurement, and constant gaping open wounds.
EB affects the body inside and out and blisters can occur all over the body, as well as in the eyes, mouth, oesophagus and affects internal organs.
Living with EB is likened to living with third degree burns and patients are at constant risk of aggressive forms of skin cancer.
■For more information or to donate to the Tough Tilly total, visit ebresearchfoundation.org