SOSDF Nurses Program
- ABOUT THE SAVE OUR SONS NURSES PROGRAM
- What does this mean for the community?
About the Save Our Sons Nurses Program
The Save Our Sons Duchenne Foundation Nurses Program was developed to ensure “Best Practice” clinical care for all with Duchenne and Becker muscular dystrophy and to support bringing clinical trials to Australia.
To achieve this, we launched the Nurses Program in 2016 to fund a specialist neuromuscular nurse in each of the 5 major children’s hospitals across Australia.
1. Victoria – Royal Childrens Hospital, Melbourne / Murdoch Childrens Research Institute
2. New South Wales – Childrens Hospital Westmead, Sydney
3. Western Australia – Perth Childrens Hospital
4. Queensland – Lady Cilento Childrens Hospital, Brisbane
5. South Australia – Womens and Childrens Hospital
This ambitious program costs $371,000 a year and we need your support to make it sustainable into the future.
What does this mean for the community?
The Save Our Sons Duchenne Foundation Nurses, will facilitate bringing clinical trials to Australia and coordinate Australian-based clinical trials for Duchenne and Becker muscular dystrophy.
They will also provide coordinated care for Duchenne and Becker families; thereby improving standards of care across Australia. The nurses will coordinate with specialists to ensure that families attend all the necessary appointments in an efficient manner and at the recommended intervals, in turn reducing the number of times families are required to visit the hospital. This will ensure optimal care is provided and will reduce the level of stress that families endure.
Our nurses have solid knowledge of each patient’s history, they will also offer significant support to families navigating the complicated and difficult journey of caring for a child with Duchenne and or Becker muscular dystrophy. The nurses will also provide specialist knowledge and experience with Duchenne and Becker muscular dystrophy to the multidisciplinary team.
They will also assist families to join the Australian Neuromuscular Disease Registry (ANMDR) to ensure critical and up-to-date data is available regarding Duchenne and Becker population in Australia.
Click here to find out more about the registry or to register.
NURSES ARE AT THE HEART OF HEALTHCARE, AND THIS IS AN ESSENTIAL PROGRAM FOR THOSE LIVING WITH DUCHENNE AND THEIR FAMILIES”
Please help, by making a donation towards the Save Our Sons Nurses Program, any donation no matter how big or small will go a long way in ensuring best practice clinical care for all those living with Duchenne and Becker muscular dystrophy.