Doctor flying cross-country to raise funds for rare disease centre to land in Broome

A doctor flying across the country to raise cash for a much-needed gene therapy centre at Melbourne’s Royal Children’s Hospital will make a stop in Broome as well as Kununurra, Karratha, Geraldton, and other WA locations on his fund-raising quest.

Flying his Cirrus SR22 solo across Australia, Associate Professor Andrew Kornberg aims to raise $4.5 million to establish dedicated spaces, resources and specialist staffing at RCH to support children with rare and complex conditions.

Currently, around one in three children with a rare disease will not reach five years of age but with new treatments like gene therapy Professor Kornberg says there is hope.

“If you provide gene therapy early enough, children are basically cured but we need to have a dedicated place to be able to administer these treatments otherwise we’re not doing the right thing by our kids,” he said.

While Australian hospitals can administer gene therapy, access is limited, highly cost prohibitive and, in many cases, can’t be delivered sustainably.

That’s why Professor Kornberg said he is taking to the skies, to make the new treatments more accessible and honour his past patients.

“There were two children I cared for with muscular dystrophies. At the time, gene therapy was just becoming available but we couldn’t offer it, not because the science wasn’t there, but because we lacked the infrastructure. That’s the reality in every capital city right now and it shouldn’t be,” he said.

“Those two kids really reinforced for me that without dedicated beds and a proper centre, these breakthroughs don’t mean much and that’s what this flight is about.”

He also called on billionaire mining magnates Andrew Forrest and Gina Rinehart to contribute.

“I’m hoping Gina Rinehart and Twiggy Forrest look at this and realise that this is for all of our children and they come to the party as well,” Professor Kornberg said.

The flight comes on the back of a previous Fly for the Kids journey back in 2017 where Professor Kornberg flew 16,000km solo across Australia in just 25 days to raise awareness and funds for children with complex neurological conditions.

“When I did this the first time around, we were successful. Every other centre in Australia developed a similar sort of program to what we developed, and that’s what I’m hoping will happen this time round with this flight,” Professor Kornberg said.

“If we raise the $4.5m it will mean that children with rare diseases will have a dedicated place where these new treatments can make a difference to their lives.

“Every day presents a challenge for so many of these children and their families, and this journey is my way of doing everything I can to bring hope and a brighter future.”

Set to land in Broome on July 8, Professor Kornberg said it was a “special stop” for him this time round.

“Back in 2017, I couldn’t get there. I left in March, which is the wrong time of year for the north so this time I made sure it was on the route,” he said.

“The west coast of Australia is just incredible, and I’m really looking forward to finally making it to Broome — it feels like a missing piece from the last trip.”

RCH Foundation chief executive Ryan Brown highlighted the importance of community support.

“This is an opportunity for every Australian to transform the lives of children with rare diseases. Your donation, no matter the size, can bring hope to children and their families who previously had none,” he said.

Andrew will take off on his ambitious flight on July 2, departing from Moorabbin Airport, south-east of Melbourne.

To learn more about Fly for the Kids or how you can donate or fundraise, please visit https://flyforthekids.org.au/.