News

What’s On: Tough Tilly

By Alex Gretgrix

POPULAR fundraising event, Tough Tilly Day, is once again returning to American Hotel on January 4 for an afternoon of festivities and fun – all for a great cause.

In its seventh year running, Tough Tilly Day raises funds for the EB Research Foundation to invest in science and medical research that will lead to products and therapies for treating and ultimately curing Epidermolysis Bullosa, a group of life-threatening skin disorders that affect individuals from birth.

EB is caused by a lack of critical proteins that bind the skin's layers together. Without these proteins, the skin tears apart, blisters, and shears off leading to severe pain, disfigurement, and wounds that may never heal.

Tough Tilly Day was created by Rory Brockwell and Ricky Robertson after seeing the horrifying effects of EB firsthand when Rory’s cousin, Tilly Wilkes, was born with the disorder.

“EB is the cruellest disease, it’s absolute torture. I see what Tilly goes through and it breaks my heart,” Rory said.

“This terrible condition is almost unheard of in the wider community – but fortunately that’s slowly starting to change.

“Since that first Tough Tilly Day in 2013, it’s just gotten bigger and bigger and that gives hope to Tilly and the 500,000 people who live with EB around the world.”

Tilly's father, Corey Wilkes is a director at the EB Research Foundation and said he’s extremely proud of what Rory and Ricky have created.

“Not only is Tough Tilly Day a fun family day with fantastic entertainment, it also raises a lot of much-needed awareness and funds for research,” he said

“There is a promising future for EB sufferers. Scientists have identified the mutation that leads to EB and they believe they know how to fix the problem.

“It’s not a question of ‘if’ the cure will be found, but ‘when’ – and funding is the key to unlocking that.”

Tough Tilly Day will be held at the American Hotel from 12pm until 6pm.

Tickets can be purchased for $60 for adults and $20 for children under 17 at ebresearchfoundation.org/events