Tough Tilly Day returns to support skin disorder cure

By Ryan Bellingham

Nov 19, 2024

Tough Tilly Day is coming back to Perricoota Station to raise funds for a rare condition. Photo by Supplied

An event that aims to support those living with a painful skin condition with no known cure is returning to Echuca-Moama.

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Tough Tilly Day is a family-friendly event which supports the Cure EB Foundation’s mission to find a cure to epidermolysis bullosa, or EB.

A rare genetic disorder, EB causes the skin to blister and tear easily, leading to severe pain and lifelong challenges for those affected.

Tough Tilly Day, named after Tilly Wilkes who was born with the condition, raises funds to support the foundation’s work.

Now a teenager, Tilly’s family began fundraising to support EB research in 2013 before establishing the Cure EB Foundation in 2023.

While no cure has been found to date, ongoing research gives hope, with over 40 clinical trials under way.

The event offers a day of live music, food trucks, kids activities and more at the Perricoota Station in Moama.

Live entertainment includes the Tristan J Ross 80s show, the Great Big Beer Band featuring Reece Mastin, and INXS tribute band INXSIVE.

Kids entertainment includes a petting farm, jumping castle, face painting, a colouring-in table, and lawn games.

Cure EB Foundation administration manager Melissa Burela said the event’s capacity has doubled since last year’s event, and Tough Tilly Day had continually grown over the last decade.

Charity auctions and a raffle will also take place, and organisers encourage local businesses and individuals to contribute by donating auction items, such as store vouchers, or offering support on the day.

Various volunteer roles are available to be filled, including taking donations for the foundation, selling raffle tickets, selling merchandise, and general assistance.

Ms Burela said event organisers are also asking for umbrella donations from any venue with spares to provide shade for attendees with EB on the day.

Volunteers receive a complimentary meal and volunteer shirt, and applications can be made by emailing events@cureeb.org.au

Tickets are $100 for adults, $35 for children between 13–18 years, free for kids under 12 years, and are available at cureeb.org.au/TTD2025

On-site parking is available, and courtesy buses will run between Perricoota Station and key locations in Echuca, with a schedule and route to be announced closer to the event.