Doctor makes Hedland pitstop on fundraiser flight across Australia for children’s rare disease centre

A senior neurologist at Melbourne’s Royal Children’s Hospital made a stop in Port Hedland on June 7 as part of a solo fundraising flight across Australia. Associate professor Andrew Kornberg’s goal is to raise $4.5 million for the country’s first dedicated gene therapy precinct for children with rare and complex diseases. Professor Kornberg said access to advanced therapies is not only helping children achieve milestones that once seemed impossible, but they are also reducing hospitalisations and, in some cases, providing a cure. “A particular condition called spinal muscular atrophy (SMA), which is one in 10,000 births – eight years ago, when we used to diagnose a child with SMA, we’d be talking about the child being in and out of hospital and passing away by the age of two. “Now we have a gene therapy that, if administered early enough, the child will live a normal life and won’t be passing away at age two; they will walk, will run around, just like any other child, and that’s where things are heading for rare diseases and gene therapy.” The fundraising flight follows a similar campaign in 2017, when Professor Kornberg flew 16,000 kilometres solo in 25 days to raise funds for children with neurological conditions. That effort helped inspire similar programs nationwide. “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,” he said. “I do outreach clinics in rural New South Wales. So, I use the passion of flying with a passion of medicine to make a difference.” After Port Hedland, Dr Kornberg flew to Broome on his journey across the country. To learn more about Fly for the Kids or how you can donate or fundraise, visit www.flyforthekids.org.au.