News & Updates
Pfizer gene therapy clinical trials commence in Australia! The first Australian boy has been screened as part of the Pfizer gene therapy clinical trials. The trial will include 10 boys...
06 Sep, 2022
The long awaited Federal Parliamentary Inquiry report into Approval Process for New Drugs and Novel Technologies has now been released. The recommendations from this report have the potential to greatly...
15 Dec, 2021
Save Our Sons Duchenne Foundation has just written a submission on behalf of our community to the Senate Standing Committee on Community Affairs. This Committee is currently inquiring into GP...
25 Oct, 2021
Save Our Sons Duchenne Foundation (SOSDF) thanks all Queensland families and young people who have participated in our recent consultation process for the Queensland Parliamentary Inquiry into Social Isolation and...
19 Aug, 2021
Are you on the Australian Neuromuscular Disease Registry (ANMDR)? With an increasing number of pharmaceutical companies interested to run clinical trials in Australia, it is critical that we have as...
28 Jun, 2021
Sarepta Therapeutics has shared an update about themulti-ascending dose clinical trial of SRP-5051 for patients with Duchennemuscular dystrophy who are amenable to exon 51 skipping. They have reported strong, dose-dependent...
04 May, 2021
Sarepta Therapeutics has, last week, announced thatthey will be hosting a webcast and conference call to present resultsfrom the 30 mg/kg arm of the MOMENTUM study. This study is a...
03 May, 2021
Dear members of the Duchenne and Becker community. You may recall that just prior to Christmas we advised of a community consultation process which was being undertaken by the...
12 Jan, 2021
You may be aware that the National Disability Insurance Scheme (NDIS) is currently undertaking a consultation process with NDIS participants and providers about a number of changes which are proposed...
14 Dec, 2020
Yesterday, Save Our Sons Duchenne Foundation hosted an NDIS Information Session. The aim of the session was for families to become familiar with NDIS processes, the supports available for each...
01 Dec, 2020
Today, Save Our Sons Duchenne Foundation hosted a Carriers Information Session. The aim of the session was to provide an overview and gain a better understanding of what it means...
26 Nov, 2020
SOSDF would like to thank all parents and carers who recently participated in our consultation process reviewing health and hospital services in rural, regional and remote NSW. Your valuable input...
19 Nov, 2020
Murdoch Children’s Research Institute (MCRI) - Royal Children’s Hospital Melbourne Funding towards the position of Neuromuscular Clinical Trials Staff Specialist Neurologist, held by Dr. Ian Woodcock. Clinical trial activities, such...
04 Nov, 2020
Catabasis Pharmaceuticals has announced the end of the Phase 3 PolarisDMD trial of edasalonexent in Duchenne muscular dystrophy. Edasalonexent is a novel oral investigational drug which inhibits NF-kappa B, a...
27 Oct, 2020
Save Our Sons have lodged a comprehensive submission to this most important Parliamentary Inquiry. As the peak body representing the Duchenne and Becker muscular dystrophy community in Australia, we are...
20 Oct, 2020
Save our Sons Duchenne Foundation have awarded the inaugural Alex Scollard Memorial PhD Scholarship to Dr Rajiv Wijesinghe. Dr Wijesinghe will undertake a PhD Scholarship in the Neuromuscular field with specific...
12 Oct, 2020
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 facilitate bringing clinical trials...
30 Sep, 2020
Save Our Sons Duchenne Foundation commissioned Marguerite Botha, an experienced NDIS Support Coordinator, to write a National Disability Insurance Scheme (NDIS) Information Guide specifically catered to families and individuals living...
29 Sep, 2020
Save Our Sons Duchenne Foundation will welcome Shadow Minister for the National Disability Insurance Scheme (NDIS), the Hon Bill Shorten MP, and Senator Deborah O’Neill to talk about the challenges...
23 Sep, 2020
Save Our Sons Duchenne Foundation Nurses Program Perth Children’s Hospital - Exclusive Neuromuscular Nurse The Save Our Sons Duchenne Foundation Nurses facilitate bringing clinical trials to Australia and coordinate Australian-based...
17 Sep, 2020
Pfizer gene therapy clinical trials commence in Australia! The first Australian boy has been screened as part of the Pfizer gene therapy clinical trials. The trial will include 10 boys...
06 Sep, 2022
The long awaited Federal Parliamentary Inquiry report into Approval Process for New Drugs and Novel Technologies has now been released. The recommendations from this report have the potential to greatly...
15 Dec, 2021
Save Our Sons Duchenne Foundation has just written a submission on behalf of our community to the Senate Standing Committee on Community Affairs. This Committee is currently inquiring into GP...
25 Oct, 2021
Save Our Sons Duchenne Foundation (SOSDF) thanks all Queensland families and young people who have participated in our recent consultation process for the Queensland Parliamentary Inquiry into Social Isolation and...
19 Aug, 2021
Are you on the Australian Neuromuscular Disease Registry (ANMDR)? With an increasing number of pharmaceutical companies interested to run clinical trials in Australia, it is critical that we have as...
28 Jun, 2021
Sarepta Therapeutics has shared an update about themulti-ascending dose clinical trial of SRP-5051 for patients with Duchennemuscular dystrophy who are amenable to exon 51 skipping. They have reported strong, dose-dependent...
04 May, 2021
Sarepta Therapeutics has, last week, announced thatthey will be hosting a webcast and conference call to present resultsfrom the 30 mg/kg arm of the MOMENTUM study. This study is a...
03 May, 2021
Dear members of the Duchenne and Becker community. You may recall that just prior to Christmas we advised of a community consultation process which was being undertaken by the...
12 Jan, 2021
You may be aware that the National Disability Insurance Scheme (NDIS) is currently undertaking a consultation process with NDIS participants and providers about a number of changes which are proposed...
14 Dec, 2020
Yesterday, Save Our Sons Duchenne Foundation hosted an NDIS Information Session. The aim of the session was for families to become familiar with NDIS processes, the supports available for each...
01 Dec, 2020
Today, Save Our Sons Duchenne Foundation hosted a Carriers Information Session. The aim of the session was to provide an overview and gain a better understanding of what it means...
26 Nov, 2020
SOSDF would like to thank all parents and carers who recently participated in our consultation process reviewing health and hospital services in rural, regional and remote NSW. Your valuable input...
19 Nov, 2020
Murdoch Children’s Research Institute (MCRI) - Royal Children’s Hospital Melbourne Funding towards the position of Neuromuscular Clinical Trials Staff Specialist Neurologist, held by Dr. Ian Woodcock. Clinical trial activities, such...
04 Nov, 2020
Catabasis Pharmaceuticals has announced the end of the Phase 3 PolarisDMD trial of edasalonexent in Duchenne muscular dystrophy. Edasalonexent is a novel oral investigational drug which inhibits NF-kappa B, a...
27 Oct, 2020
Save Our Sons have lodged a comprehensive submission to this most important Parliamentary Inquiry. As the peak body representing the Duchenne and Becker muscular dystrophy community in Australia, we are...
20 Oct, 2020
Save our Sons Duchenne Foundation have awarded the inaugural Alex Scollard Memorial PhD Scholarship to Dr Rajiv Wijesinghe. Dr Wijesinghe will undertake a PhD Scholarship in the Neuromuscular field with specific...
12 Oct, 2020
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 facilitate bringing clinical trials...
30 Sep, 2020
Save Our Sons Duchenne Foundation commissioned Marguerite Botha, an experienced NDIS Support Coordinator, to write a National Disability Insurance Scheme (NDIS) Information Guide specifically catered to families and individuals living...
29 Sep, 2020
Save Our Sons Duchenne Foundation will welcome Shadow Minister for the National Disability Insurance Scheme (NDIS), the Hon Bill Shorten MP, and Senator Deborah O’Neill to talk about the challenges...
23 Sep, 2020
Save Our Sons Duchenne Foundation Nurses Program Perth Children’s Hospital - Exclusive Neuromuscular Nurse The Save Our Sons Duchenne Foundation Nurses facilitate bringing clinical trials to Australia and coordinate Australian-based...
17 Sep, 2020