Philanthropy takes flight: the neurologist who swapped medical charts for flight plans

Posted on 12 Aug 2025

By Nick Place, journalist, Institute of Community Directors Australia

Fly for the kids cover1 jpg — Senior neurologist, Associate Professor Andrew Kornberg, and his trusty Cirrus SR 22

Associate Professor Andrew Kornberg, a senior neurologist at the Royal Children’s Hospital (RCH) in Melbourne, recently circumnavigated Australia in a small plane under the banner of Fly for the Kids to raise money for much-needed gene therapy infrastructure. We spoke to him about his mission.

Andrew, how did Fly for the Kids begin?

This was actually the second time I’ve done a fundraising flight. In 2017, I had a patient, a little girl called Brooke, who was about six when I met her in my role as a neurologist. She had abnormal stiffening movements, which basically made her life hell, and this was the happiest little person you would ever meet. Medications didn’t help and nothing we did could help. She was in and out of intensive care with painful spasms to the degree that we had to sedate her to relieve the spasms. There was a treatment for adults, deep brain stimulation, but it wasn’t readily available for children, which didn’t make sense. In fact, the government used to send paediatric patients overseas to have this procedure done, while Australia is a first-world country with the best neurosurgeons, great neurologists, all the best imaging, yet we couldn’t offer deep brain stimulation to Brooke. So my first flight was [to raise money] to establish a complex movement program at the RCH, which would include brain stimulation. It raised $1.4 million, which basically established the clinic for the first five years, and the great news is that Brooke got deep brain stimulation and went from being in and out of intensive care to getting out of her wheelchair and walking to me to give me a hug. But this clinic has been able to help countless more children and young people and still continues to be a vital program at the RCH today.

Andrew Kornberg, here celebrating completing his flight with a patient, says his passions are family, flying and his work.

What a story. So why did the second flight only happen eight years later?

Well, the first one was related to the Complex Movement Disorders program and for kids like Brooke who so desperately needed this service. I never thought I would do something like this again, but this time it’s even more critical and sometimes when things are critical and hard, somebody has got to do it.

What was the critical issue that inspired you this year?

Rare diseases are defined as conditions that occur in less than one in 2000 people. But there are 10,000 rare diseases, and when you put them all together, that makes 10 per cent of the Australian population suffering from one or more of them. This includes diseases like spinal muscular atrophy, muscular dystrophy, particular types of epilepsy syndromes or bone marrow failures. What we know is that if a child has a rare disease, one-third of them will not reach their fifth birthday. In spinal muscular atrophy, which occurs in one in 10,000 births, when a child is diagnosed – say, a decade ago, the child would be in and out of hospital, getting weaker, and would pass away by about the age of two. It was a nightmare.

But over the last decade, there have been new therapies and treatments, and about six years ago, a gene therapy became available for spinal muscular atrophy. If it is administered early enough, that child can be cured. And now we’re at a stage where with gene therapy, we have established newborn screening so that every baby is screened and if they have the condition, they administer gene therapy and the children can live normal lives.

That’s just one disease. Two-thirds of rare diseases are genetic in type, and right now, we can do gene therapy at the hospital, on an ad hoc basis, but we don’t have dedicated beds, we don’t have dedicated staff or infrastructure. There is only one dedicated centre in the world, in London, but we should have one in Australia, and as one of the world’s top five paediatric hospitals in the world, the RCH in Melbourne is the perfect place for it.

So, this year’s flight was raising funds for that?

Yes, I went to the Royal Children’s Hospital Foundation and the Live Life Foundation to say we’ve got to do this and raise $4.5 million to start this process happening for the kids. Governments don’t fund dreams, they fund bricks and mortar stuff, so this flight became my way of getting the word out that rare diseases matter and have treatments and will have new treatments in the future. We need to have a dedicated precinct to allow these treatments to happen and research to be able to happen. We’ve got to be ahead of the game so when these advanced therapy treatments become available, we have dedicated beds, so they can be delivered sustainably and so that kids don’t miss out.

“Fly for the Kids is probably the most important thing that I’ve done because this can help all the kids now and into the future.”

Ass Prof Andrew Kornberg

How often do you fly?

I love flying. My passions are my family, medicine and neurology, and flying. I use my flying skills to do outreach clinics in remote New South Wales, flying an hour and a half each way, to be able to visit patients there every six weeks. The difference with Fly for the Kids is that I had to circumnavigate Australia, flying virtually every day, and often for four or five hours at a time.

How difficult is it to fly a small plane around Australia? What kind of plane do you have?

I have a Cirrus SR 22, a single-engine plane. I’m an instrument-rated pilot so I could fly in cloud, sometimes for hours. The flight was hard, very difficult, but nothing like the difficulty that patients and families suffer on a day-to-day basis. Every day, I was getting up at 4am to check the weather, lodge all my flight plans, get in a cab, go to the airport, get the plane ready. Then fly for hours, land, fuel up and fly again. I’d land, go to my hotel, eat and start planning the next day. That was 22 out of the 24 days, with two rest days. I flew clockwise to get the hard part of Australia, which is essentially the southern part and up the west coast, done early when I was fresh. It was lonely in the plane, unless I had supporters or sponsors come on a short leg with me. But I also saw incredible sights because this is the most beautiful country in the world, and I met amazing people, supportive of the flight and who knew what the Children’s Hospital is all about.

Andrew Kornberg at work at Melbourne's RCH.

But I was knackered. It was the toughest thing I’ve ever done, but also the most incredible thing I’ve ever done.

What inspired you to be the one who put yourself on the line to raise this money?

My mum told me something when I was about 12 years old. She told me, “Andrew, in life, you’re born and then you die. But it’s what you do in between that’s important.” My mum is gone now but it’s something I always remember and cherish. Every day that I go to work, I am privileged that I do what I can do. And I am privileged that families allow me to be part of their lives for sometimes 25, 30 years.

Fly for the Kids is probably the most important thing that I’ve done because this can help all the kids now and into the future, and it will become something that is Australia-wide with dedicated beds and dedicated infrastructure in the end.

Will Fly for the Kids fly again, do you think?

I don’t know. I’m still recovering from this one. I suppose if there’s something in the future that feels as important as advanced therapies, the answer is I would contemplate it. I mean, I think why this year’s flight had to be done is because it is the right thing, and there might be another right thing. I mean, kids don’t vote and can be second class citizens sometimes. As I said, governments don’t fund dreams, but we can make it come true.

More information

Fly for the Kids has so far raised about half of its $4.5 million target and is seeking philanthropic or other support to reach its goal. Click here for more detail.