THE AUSTRALIAN DUCHENNE REGISTRY
The Australian Duchenne Registry is a patient registry that collects information about Australians with Duchenne and Becker muscular dystrophy and carriers of these conditions, with the aim of opening up opportunities for participation in research and clinical trials. The registry is a program of Save Our Sons Duchenne Foundation in collaboration with the Murdoch Childrens Research Institute (MCRI) in Melbourne.
THE AUSTRALIAN DUCHENNE REGISTRY
The Australian Duchenne Registry is a patient registry that collects information about Australians with Duchenne and Becker muscular dystrophy and carriers of these conditions, with the aim of opening up opportunities for participation in research and clinical trials. The registry is a program of Save Our Sons Duchenne Foundation in collaboration with the Murdoch Childrens Research Institute (MCRI) in Melbourne.
RESEARCH WE FUND
The vast majority of funding Save Our Sons Duchenne Foundation is able to secure is through partnerships, events and fund raising campaigns and is allocated to a number of programs including research and clinical trial opportunities locally and abroad.
We hope that by providing these much-needed funds to the research community, we may one day find a cure for all those living with Duchenne and Becker muscular dystrophy.
RESEARCH WE FUND
The vast majority of funding Save Our Sons Duchenne Foundation is able to secure is through partnerships, events and fund raising campaigns and is allocated to a number of programs including research and clinical trial opportunities locally and abroad.
We hope that by providing these much-needed funds to the research community, we may one day find a cure for all those living with Duchenne and Becker muscular dystrophy.
ENHANCING QUALITY OF LIFE
The Save Our Sons Duchenne Foundation Enhancing Quality Of Life (EQOL) Program was developed to ‘bridge the gaps’ in equipment provision and funding for those items not currently available under State/Federal Government funding schemes such as the National Disability Insurance scheme (NDIS) including:
- Cough assist machines that help with coughing when the chest muscles are too weak to effectively clear secretions from the lungs
- Breathing machines (sip and puff mouthpiece ventilation)
- Swim scooters (Yamaha SeaDoo)
- Mobility scooters
- Stand-up wheelchairsÂ
ENHANCING QUALITY OF LIFE
The Save Our Sons Duchenne Foundation Enhancing Quality Of Life (EQOL) Program was developed to ‘bridge the gaps’ in equipment provision and funding for those items not currently available under State/Federal Government funding schemes such as the National Disability Insurance scheme (NDIS) including:
- Cough assist machines that help with coughing when the chest muscles are too weak to effectively clear secretions from the lungs
- Breathing machines (sip and puff mouthpiece ventilation)
- Swim scooters (Yamaha SeaDoo)
- Mobility scooters
- Stand-up wheelchairs
NURSES PROGRAM
During late 2015, Save Our Sons Duchenne Foundation identified that one of the key barriers to bringing Duchenne clinical trials to Australia was the nationally under-resourced neuromuscular clinics. Busy hospitals across the nation could not allocate sufficient staff to facilitate the trials while still providing ‘Gold Standard’, ‘Best Practice’ clinical care for those with Duchenne.
NURSES PROGRAM
During late 2015, Save Our Sons Duchenne Foundation identified that one of the key barriers to bringing Duchenne clinical trials to Australia was the nationally under-resourced neuromuscular clinics. Busy hospitals across the nation could not allocate sufficient staff to facilitate the trials while still providing ‘Gold Standard’, ‘Best Practice’ clinical care for those with Duchenne.