The stars align: Ben and Ryan’s remarkable story
18 December 2023
Ryan Brown is a man on a mission to find the cure to his own disease. Little did he know, his lifelong quest would come full circle when he found himself reunited with a prominent researcher whose work was pivotal in understanding his condition.
This is the remarkable story of two researchers who met under unexpected circumstances, their paths crossing again by a determination to find answers, and two people brought closer together by a common goal to change the lives of cancer patients.
Over a decade ago when working in Queensland, Professor Ben Hogan was involved in a case study diagnosing the genetic cause of Hennekam syndrome - a malformation of the lymphatic system that causes a range of issues, including lymphoedema - in a family from Bundaberg. There were three brothers in this family that had Hennekam syndrome, one of those being Ryan Brown.
When deciding what to do after finishing school, Ryan got in touch with Ben to learn more about his work in lymphoedema, and decided to pursue science. He completed a degree in bio chemistry and molecular biology with honours at the University of Queensland, and then moved to Melbourne and joined Ben’s lab at Peter Mac where he is in his third year of his PhD studies with the University of Melbourne.
Ryan’s PhD project is working on how to regenerate lymphatic vessels in lymphoedema and is a major part of Ben’s research program. Essentially, he is working towards a cure for his own disease, and is in a rare position as both a scientist and a patient to make a real difference. While primary (inherited) lymphoedema is rare (1/20,000) there are 300,000 Australians with lymphoedema at any one time – most patients recovering from cancer therapy. Ryan’s work (they use zebrafish models to investigate diseases like this) aims to benefit both rare and common forms.
For Ryan and his family growing up, there wasn’t a lot of information available for primary lymphoedema, let alone Hennekam syndrome, and his mother couldn’t find answers anywhere which meant they spent a lot of time in the dark, and getting a diagnosis took a long time. Now more than a decade later, Ryan’s in a position to speak about their experiences living with a rare disease and more importantly, improve awareness and accessibility of information for young Aussies growing up with lymphoedema.
This story was produced by Jessica Webster.