For the first time in Australia, a high-level conference to break down barriers for Australians with Duchenne muscular dystrophy will be staged (in Sydney).

The Duchenne ACTT Now Conference, hosted by the Save Our Sons Duchenne Foundation, will address advocacy, clinical care, trials and therapies. 

 Close to 100 delegates including leading clinicians from across the globe, Australian government representatives, researchers and international pharmaceutical companies, will gather for two days at Sydney Olympic Park 13-14 September.

 

World renowned neurologist Professor Brenda Wong from Cincinnati Children’s Hospital will outline her experience in caring for children with Duchenne, and Professor John Jeffries, also from Cincinnati Children's Hospital, and Associate Professor Kan Hor from Nationwide Children’s Hospital will speak about the latest in cardiac care for those with Duchenne.

 

Affecting one in 3500 newborn boys (and girls in rare cases), Duchenne is a progressive condition which eventually affects all voluntary muscles and involves the heart and breathing muscles in its later stages.

Approximately 30 boys are diagnosed with Duchenne annually in Australia, and between 600 and 900 Australian families currently live with the condition. Children diagnosed with Duchenne typically require a wheelchair by their early-teens and sadly, most do not live past their twenties.