Life expectancy for Australians living with DMD have increased from 18 for those borne before 1970, to around 30 today.
As adult care remains fragmented and inconsistent between hospitals and States, the Symposium will develop global multi-disciplinary care recommendations.
MEDIA RELEASE
A world-first International Symposium dedicated to improving multi-disciplinary clinical care for adults living with Duchenne muscular dystrophy (DMD) will take place in Sydney over the next three days.
Hosted by the Save Our Sons Duchenne Foundation, the invitation-only event will bring together more than 35 of the world’s leading clinicians and researchers to develop the first multidisciplinary, global best-practice recommendations for adult DMD care.
Specialists attending the Symposium include leaders in cardiology, pulmonology, neuromuscular, endocrinology and gastroenterology.
Family members of adults with DMD will also be given a platform to provide input, ensuring lived experience is embedded in future care recommendations.
Life expectancy rising – but adult care is not keeping pace
A major driver of the Symposium is the clear shift in survival outcomes for people with DMD.
A recent Monash University study (2025) of 356 people found median life expectancy for those with DMD increased from 18.2 years (pre-1970 births) to 24 years for those born between 1990–1999. Most individuals born with DMD after 2000 are still alive today.
Save Our Sons Duchenne Foundation CEO, Sandy Kervin said this seismic shift in life expectancy has created an urgent need to take an integrated approach to building adult-care expertise across disciplines.
“Duchenne was once considered predominantly a childhood condition, but with advances in treatment that is no longer the case,” Ms Kervin said.
“As more young people with DMD now survive into adulthood, demand for coordinated adult healthcare has never been greater.”
“However, the delivery of that care remains fragmented and inconsistent across Australia and worldwide, with many adult physicians having limited clinical exposure to the condition.
“This Symposium begins the crucial work of building modern, evidence-based clinical recommendations so that every adult with DMD receives the specialist care they deserve as we continue the search for a cure.”
Dr Mike Freelander MP, paediatrician and Federal Member for Macarthur, will open the Symposium at 9am, Monday 8 December, at The Fullerton Hotel Sydney.
Visiting Clinician Bios
Some of the visiting clinical specialists gathered at the SOSDC Global Symposium to start the changes needed in Adults Living with Duchenne Muscular Dystrophy include:
· Dr. Kan Hor (US): A leading paediatric cardiologist and Director of Cardiac MRI at Nationwide Children's Hospital, with expertise in cardiac imaging, heart failure, and Duchenne muscular dystrophy. Dr Hor is a Medical Advisor to Save Our Sons Duchenne Foundation.
· Professor Ros Quinlivan (UK): Leading neurologist in neuromuscular disorders and Director of the Neuromuscular Complex Care Centre, London. Oversees the UK’s largest adult Duchenne cohort and leads the adult DMD North Star network. Research Director of the European Neuromuscular Centre.
· Dr Alanna (Allie) Hare (UK): Consultant Respiratory Physician at the Royal Brompton Hospital and leading specialist in sleep medicine and respiratory failure; President of the British Sleep Society; Awarded a 2025 National Clinical Impact Award for her contribution to national sleep medicine pathways.
· Professor Anton Emmanuel (UK): Professor of Neuro-gastroenterology at UCL and internationally recognised expert in gut neurophysiology. Author of more than 250 peer-reviewed papers and Editor-in-Chief of two leading medical journals. Senior NHS leader in Equality, Diversity and Inclusion.
About us:
Save Our Sons Duchenne Foundation was founded in 2008 and is the peak body for those living with Duchenne and Becker muscular dystrophy (around 1,000 young people) across Australia.
Our vision is to find a cure for Duchenne and Becker muscular dystrophy whilst actively working to ensure enhanced quality of life (including quality of educational opportunities) for those young people and their families affected by this condition.
Along with the funding of a critical nurse program in some major children’s hospitals across Australia, Save Our Sons Duchenne Foundation also delivers a scholarship program and resources which are designed to support families and young people living with Duchenne and Becker muscular dystrophy.
Contact details:
Todd Hayward – 0412 205 151