welcome to DuchenneXchange

- a positively charged Duchenne muscular dystrophy community.
  • join today!
Community Organizations

Save Our Sons Duchenne Foundation

Shop 3, 570 New Canterbury Rd, Hurlstone Park
Sydney, New South Wales, Australia
Email   Phone   Web  

Save Our Sons Duchenne Foundation was founded in 2008 by Elie Eid following the diagnosis of his son Emilio with Duchenne, and is the peak body for those living with Duchenne and Becker across Australia.

Our mission is to find a cure for Duchenne.  We strive to achieve this by funding research and clinical trials, improving care, funding nurses and providing quality of life enhancing equipment.  We aim to make a difference in the lives of all living with Duchenne.

Since its inception the team have raised in excess of $12 million AU which has been used to support our programs and activities including:

• Funding preclinical research and clinical trials in the US, Canada, Australia and the UK 


• Funding equipment such as cough assist machines and ventilators, swim and mobility scooters and stand-up wheelchairs to give back what Duchenne has taken away 


• Producing and distributing resources such as new diagnosis and teacher resource packs 


• Established and manage The Duchenne Registry Australia, the first patient-led registry in Australia 


• Funding specialist nurses in hospitals around Australia 


• Advocacy for access to clinical trials, emerging therapies and early diagnosis

• Established the Duchenne Network Australia in April 2018 investing $1.36 million into a 3-year program to develop a clinical trial network providing the additional infrastructure needed to accelerate access to clinical trials and emerging therapies for those living with Duchenne

 

rareRelated