DUCHENNE CONNECT AUSTRALIA
DuchenneConnect Australia 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 and was developed in 2017 through a collaboration with Parent Project Muscular Dystrophy (PPMD). PPMD is the US Duchenne patient organisation that owns DuchenneConnect – a highly successful patient registry that has been collecting data since 2007.
DUCHENNE CONNECT AUSTRALIA
DuchenneConnect Australia 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 and was developed in 2017 through a collaboration with Parent Project Muscular Dystrophy (PPMD). PPMD is the US Duchenne patient organisation that owns DuchenneConnect – a highly successful patient registry that has been collecting data since 2007.
RESEARCH WE FUND
The vast majority of funding Save Our Sons is able to secure through partnerships, events and fund raising campaigns is allocated to a number of 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 produce the miracle drug we so desperately need.
RESEARCH WE FUND
The vast majority of funding Save Our Sons is able to secure through partnerships, events and fund raising campaigns is allocated to a number of 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 produce the miracle drug we so desperately need.
ENHANCING QUALITY OF LIFE
We help families afford essential quality of life equipment not currently available under State/Federal Government funding schemes 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 (SeaDoo)
Mobility scooters Stand-up wheelchairs
ENHANCING QUALITY OF LIFE
We help families afford essential quality of life equipment not currently available under State/Federal Government funding schemes 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 (SeaDoo)
Mobility scooters Stand-up wheelchairs
NURSES WE FUND
During late 2015, Save Our Sons 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 WE FUND
During late 2015, Save Our Sons 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.