I was born on 23 April 1953. Two days after I was born James Watson and Francis Crick described in the journal Nature on 25 April—Anzac Day—the structure of the DNA helix which carries our genetic material. The world had some understanding of inheritance patterns through the work of many scientists before then. I'm sure you all remember the familiar name of Gregor Mendel, the Austrian monk, who described Mendelian inheritance and many scientists from the middle of the 19th century onwards worked on different inheritance patterns and genetics. However, the dramatic explosion in our knowledge of human genetics came following the Watson and Crick discoveries.

In my over 40-year medical career there's been a huge increase in knowledge of genetics and other major advances along the way such as the completion of the Human Genome Project in 2003, two years ahead of schedule, which has further dramatically advanced our knowledge. When I started my medical career the cause and genetic markers for most of the genetic disorders was unknown. Even relatively common disorders such as epilepsy were often described as idiopathic, meaning 'no cause found' when in fact many had genetic causes which have subsequently been discovered.

Most of my medical career was involved with discovery of the causes of these genetic disorders, and the finding of the genetic markers were found for many of the severe metabolic disorders; some of the fatal diseases of childhood, such as cystic fibrosis and spinal muscular atrophy, as I've mentioned; mitochondria disorders; thalassaemia; and many other disorders.

In fact the 21st century was the century of finding the cause medically. However, the 21st century is now the century of finding the cure. Australia is leading the world in many of these treatments. My friend Professor John Rascoe AO, head of gene and stem cell therapy at the Centenary Institute at the Royal Prince Alfred Hospital and Sydney university, has developed gene therapy for a certain form of haemophilia which has dramatically changed the clinical course and prognosis. He and his team are working on gene therapy for other haematological disorders, such as thalassemia, the more common forms of haemophilia and other genetically directed treatments for some of the cancers, particularly in the rare cancer field. We're developing and using genetically directed treatments such as CAR T-cell therapy for some of the cancers in adult life, particularly haematological cancers.

These treatments are now available at the Royal Prince Alfred Hospital in Sydney and at the Peter MacCallum Institute in Victoria, as well as the Royal Melbourne Children's Hospital. The cost of these treatments is huge. As an example, the treatment of spinal muscular atrophy with the use of a new medication called SPINRAZA costs hundreds of thousands of dollars.

However, I wish to specifically mention Duchenne muscular dystrophy and the Save our Sons organisation, which is supporting children who have a fatal form of muscular dystrophy called Duchenne muscular dystrophy. It is inherited by males and carried by females. This disorder is uniformly fatal. I know we're not allowed to use props, but they have spent a lot of time and effort developing their five-year plan which we hope to launch tomorrow via Zoom as we couldn't have it physically in Parliament House. It's a very worthy organisation. This disorder is fatal, as I've said, to the boys who have it. Unfortunately, there is no specific treatment. What we need now is time and a cure. We have found the gene marker and I'm sure that eventually we will find a cure, but like many of these disorders and many rare diseases we need to put effort into developing a research program that will find a cure. I'm confident that in the 21st century we'll find a cure for many of these disorders. They are terrible disorders, but we have the ability to cure and it's time to move on for that cure.

I'd encourage every member to support Save Our Sons and to tune into our Zoom meeting that we're going to have tomorrow to launch their five-year plan. I thank the House for its indulgence.