News & Updates

SOSDF to capitalise on the Queensland Parliamentary Inquiry into Social Isolation and Loneliness

Save OurSons Duchenne Foundation (SOSDF) thanks all Queensland families and youngpeople who have participated in our recent consultation process for theQueensland Parliamentary Inquiry into Social Isolation and Loneliness. Yourinput enabled...
Are you on the Australian Neuromuscular Disease Registry (ANMDR)?

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...
Sarepta Therapeutics Reports Positive Clinical Results from Phase 2 MOMENTUM Study of SRP-5051 in Patients with Duchenne Muscular Dystrophy Amenable to Skipping Exon 51

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...
Sarepta Therapeutics to Share Clinical Update for 30 mg/kg arm of MOMENTUM Study for SRP-5051

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...
Commonwealth Inquiry into Independent Assessment For NDIS

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...
Have Your Say On NDIS

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...
SOSDF NDIS Information Session

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...
SOSDF Carriers Information Session

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...
NSW Parliamentary Inquiry – Rural, Regional and Remote Health and Hospital Services.

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...
Funding towards the position of Neuromuscular Clinical Trials Staff Specialist Neurologist, held by Dr. Ian Woodcock.

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...
Catabasis Pharmaceuticals Announces Top-Line Results for the Phase 3 PolarisDMD Trial of Edasalonexent in Duchenne Muscular Dystrophy

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...
Commonwealth Parliamentary Inquiry New Drugs and Novel Medical Technologies

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...
Alex Scollard Memorial PHD Scholarship

  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...
Save Our Sons Duchenne Foundation Nurses Program – The Royal Children’s Hospital in Melbourne

  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...
Duchenne & Becker muscular dystrophy, a guide for NDIS Planning

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...
NDIS Virtual Town Hall

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...
SOSDF Nurses Program Perth Children’s Hospital - Exclusive Neuromuscular Nurse

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...
We need your stories - Parliamentary Inquiry into new drugs and novel medical technologies

WE NEED YOUR PERSONAL STORIES… As reported recently, the Federal Government has established a Parliamentary Inquiry into new drugs and novel medical technologies. SOSDF had been advocating for such an...
Save Our Sons Duchenne Foundation Submission to the Federal Department of Education, Skills and Employment. 2020 Review of the Disability Standards for Education 2020

SOSDF thanks the Duchenne and Becker community for your active participation and critical contribution to our wide ranging submission to the 2020 Review of the Disability Standards for Education 2005....
SOSDF Enhancing Quality-of-Life (EQOL) Program

Due to the full implementation of the National Disability Insurance Scheme (NDIS) coming to fruition across all Australians States and Territories, where participants receive accurate advice and the services of...