Pearl Jam frontman Eddie Vedder’s charity embroiled in international legal stoush

Eddie Vedder’s charity is at the heart of a dispute over the rights to use the name of a Melbourne girl with a rare illness.

Pearl Jam frontman Eddie Vedder’s charity is embroiled in an international legal stoush over the rights to the use the name of a 12-year-old Australian girl to fundraise for a rare illness.

Vedder’s New York-based charity EB Research Partnership has sent a series of legal letters demanding the profits from funds raised using Tilly Wilkes’ name.

The Melbourne girl suffers from Epidermolysis Bullosa, a “life-hreatening genetic skin disorder” that causes painful blistering and scarring.

Tilly’s family and friends raised $95,000 at an event on the Murray River at Moama named “Tough Tilly Day”.

But Vedder’s charity claims it owns the intellectual property in the name and said the organisers might have to pay up if the use continues.

Lead singer of Pearl Jam, Eddie Vedder. Picture: AFP

“You must not use the “Tough Tilly” trade mark,” a letter sent by Adelaide lawyer Debrah Mercurio, on behalf of Vedder’s charity, stated.

“If Cure EB… continues to exploit our clients’ intellectual property rights and/or proceeds with use of our client’s trade mark ‘Tough Tilly’.... our client will seek an account of profits.. plus interest and… costs on an indemnity basis.”

Vedder was a co-founder of EB Research Partnership, along with his wife Jill, a former fashion model, who is also chair.

The charity, which is supported by Billie Eilish and Will Ferrell, raises money for medical research into EB.

Australian multimillionaire businessman Scott Didier and property developer Mark Walkley, who are friends with Tilly’s family, had been in partnership with Vedder’s charity until a bitter falling out last year.

They had sought clarification from Vedder’s New York chief executive Michael Hund, who is paid more than $530,000 (AUD) a year, on where money was being spent.

The dispute led to the Australian board members quitting as a group in February last year, while some US-based board members with children who have EB also walked away.

Mr Didier runs insurance company builder Johns Lyng Group which turned over more than $1 billion last year, and owns Byron Bay’s Great Northern Hotel.

He set up a new charity, Cure EB, along with Mr Walkley and Corey Wilkes, Tilly’s father, which has since been receiving legal demands from Vedder’s charity.

They have previously raised more than $5 million for medical research into EB.

They plan to raise more than $1 million each year under their new charity.

Tilly Wilkes, 12, suffers from a rare skin condition. She is pictured here with parents Kelly and Corey. Picture: Rob Leeson

Mr Didier responded to the Adelaide legal team for Vedder’s charity via email, claiming the demands were “silly”.

“Please stop sending us silly legal letters and wasting the charity’s money, as previously stated many times, we are volunteers trying to raise money for scientific research to cure EB as soon as we can and every dollar counts,” he wrote on January 3 this year.

“So to that effect we will not be engaging council or lawyers because we won’t be drawn into using money donated by very kind people for research to then waste it.”

Corey Wilkes said being asked to stop using his daughter’s name for fundraising was “ridiculous”.

“I just find it disgusting, we’re all rowing the same boat to one day find a cure,” he said.

“Tough Tilly has always been us. They would never run the event. Why would they want to stop it?”

Mr Walkley said “Tough Tilly” had been running since 2013.

“We’re all volunteers, we’re all just blown away they would want to stop an event like this,” he said.

“We can’t believe what they are trying to do to us. It is about Tilly, that’s what it’s all about. We just want to raise the funds for the kids.”

Mr Walkley said Cure EB was also planning to go ahead with its “Cotton Ball” in May.

Mr Hund said in response to questions from this masthead that it had offered to hand over the naming right to Tough Tilly Day last year but had not received a response.

However, the demand to stop using Tilly’s name was reissued in November, according to legal letters.

The Tough Tilly charity event expected to raise $100,000 was subject to legal threats. Picture: Rob Leeson

He said that Cure EB had created confusion because it was using similar logos to EBRP Australia.

“As such, no decision has yet been made on what steps to take next to address EBRP’s concerns,” he said in a statement.

“EBRP welcomes funds being raised by Cure EB and any other charitable organisation for research into a cure for EB.

“However, EBRP is concerned to ensure that the public is not confused between the charities so that donors and sponsors are able to support the charity of their choosing.”

Mr Didier had set up EB Research Foundation Australia in 2016 but then merged with the New York branch.

The merger was inked following a meeting with Alex Silver, whose son Jackson has EB.

Mr Silver was one of the founding members of the EB Research Partnership, along with Jill and Eddie Vedder in 2010.

He has since left the charity and declined to comment when approached for this story.

EBRP Australia has raised more than $5 million searching for a cure for EB,

The Vedders were behind a fundraiser during the Adelaide and Gold Coast Suns game in South Australia in August last year.

Former AFL star and broadcaster Jonathan Brown, who is also an ambassador for the charity, interviewed Vedder at half time of the match which was played on Adelaide Oval screens.