A Cure EB spokesperson said Tough Tilly Day was a success by all accounts.
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This year’s Tough Tilly Day saw a large turnout, a celebrity appearance, and raised thousands of dollars in donations.
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Despite the 40-degree heat, the annual event welcomed around 700 guests at Perricoota Station on Saturday, January 4.
Travis Fimmel pictured with Tilly Wilkes, the event’s namesake.
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Among the crowd was local TV star Travis Fimmel, appearing alongside the Travla team, who donated 50 per cent of drink sales on the day to the Cure EB Foundation.
Administration manager Melissa Burela said Mr Fimmel’s appearance was a surprise, but a welcome one.
“He’s such a lovely man, and just seeing how everyone respects him and vice versa was really wonderful,” she said.
The event was generously supported by local businesses, clubs, volunteers and attendees, who raised around $85,000 for the foundation, Ms Burela said.
Savage Force made a significant contribution of $12,000 in honour and memory of Luke Wentworth of the Gassa ski race team.
Ms Burela extended the foundation’s thanks to everyone involved, including the auctioneers, food caterers and live entertainment.
“(We want to give) a huge shout-out to all the community and everyone who came, supported and helped us on the day,” she said.
“As someone who’s not local to the area, it was an amazing experience. We’re really, really thankful.”
Attendees in front of the stage at Tough Tilly Day.
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The proceeds will fund research into treating epidermolysis bullosa, or EB, with the ultimate goal of finding a cure for the condition.
EB is a rare and painful genetic disorder that causes skin to easily tear and blister, and can affect internal organs, leading to premature deaths.
The Cure EB Foundation aims to raise $1 million annually in Australia, and is working with international partners to fund advancements in EB treatments.
Ms Burela said events such as Tough Tilly Day, named after Tilly Wilkes, who has the condition, are crucial for the foundation’s research fundraising.
Over 40 clinical trials into EB treatments are under way across the globe, and two notable projects are among those receiving funds from the foundation.
A spray-on skin treatment, developed by Dr Fiona Wood, is being tested for adaptation as a treatment for EB by Phoenicis Therapeutics in the United States.
Dr Wood’s technology, developed for burns victims, is created using a patient’s own skin cells and helps wounds to heal faster and reduce scarring.
In previous years, funds from the event have supported a topical gel made by Krystal Biotech, which treats severe forms of EB.
While the gel has been approved for use in the US, it currently costs around $1 million per patient each year to access, and is not yet available in Australia.
The foundation is committed to reducing the cost of the gel and making it more accessible to patients.
Ms Burela said Tough Tilly Day would return to Perricoota Station in January next year.
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