Remembering Gary “Angry” Anderson
The Save Our Sons Duchenne Foundation is deeply saddened by the passing of our dear friend and long-standing ambassador, Gary “Angry” Anderson. For more than a...
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Save Our Sons brings Duchenne community’s voice to NSW Parliament
Save Our Sons Duchenne Foundation has joined the rare disease community at NSW Parliament House for an event focused on strengthening connections and improving support for...
World Duchenne Awareness Day: Save Our Sons joins global call for better access
Access to care and support can change lives for families living with Duchenne muscular dystrophy. This year’s World Duchenne Awareness Day calls attention to the barriers...
Save Our Sons sets sights on future of Duchenne care
More than 500 people gathered in Sydney to support people living with Duchenne and Becker muscular dystrophy at Save Our Sons Duchenne Foundation’s annual fundraising event....
PTC Therapeutics Provides Regulatory (FDA) Update on Translarna™
PTC Therapeutics Provides Regulatory Update on Translarna™ February 12, 2026 WARREN, N.J., Feb. 12, 2026 /PRNewswire/ -- PTC Therapeutics, Inc. (NASDAQ: PTCT) announced today that it...
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Remembering Gary “Angry” Anderson
The Save Our Sons Duchenne Foundation is deeply saddened by the passing of our dear friend and long-standing ambassador, Gary “Angry” Anderson. For more than a...
Save Our Sons brings Duchenne community’s voice to NSW Parliament
Save Our Sons Duchenne Foundation has joined the rare disease community at NSW Parliament House for an event focused on strengthening connections and improving support for...
World Duchenne Awareness Day: Save Our Sons joins global call for better access
Access to care and support can change lives for families living with Duchenne muscular dystrophy. This year’s World Duchenne Awareness Day calls attention to the barriers...
Save Our Sons sets sights on future of Duchenne care
More than 500 people gathered in Sydney to support people living with Duchenne and Becker muscular dystrophy at Save Our Sons Duchenne Foundation’s annual fundraising event....
PTC Therapeutics Provides Regulatory (FDA) Update on Translarna™
PTC Therapeutics Provides Regulatory Update on Translarna™ February 12, 2026 WARREN, N.J., Feb. 12, 2026 /PRNewswire/ -- PTC Therapeutics, Inc. (NASDAQ: PTCT) announced today that it...
Muscular Dystrophy Australia - Inclusive Classrooms
Friday, 28 November 2025, 9AM - 5:00PM Level 3, 48 Flemington Road, Parkville, Vic A one-day professional learning workshop for teachers and GET TICKETS
Satellos Announces First Adult Patient Dosed in LT-001, an Open-Label, Long-Term Follow-Up Study of SAT3247 in Duchenne Muscular Dystrophy
First returning adult patient from Phase 1b study recently dosed; additional returning patients being scheduled 11-month open-label study will evaluate functional outcomes, safety, muscle composition by...
Genetic Webinar Series
Genetics Webinar Series - Events WEBINAR 1 Could It Be Genetic? If you've ever wondered whether there might be a genetic explanation for your child's health...
Sarepta Therapeutics Announces Voluntary Pause of ELEVIDYS Shipments in the U.S.
CAMBRIDGE, Mass.--(BUSINESS WIRE)--Jul. 21, 2025-- Sarepta Therapeutics, Inc. (NASDAQ:SRPT), the leader in precision genetic medicine for rare diseases, today issued the following statement: Today, Sarepta Therapeutics...
Edgewise Therapeutics Reports Positive Results on Sevasemten Program for Becker and Duchenne Muscular Dystrophies
– New open label data in Becker demonstrated sustained disease stabilization up to three years, reinforcing prior clinical findings – – Ongoing pivotal trial and FDA...
Sarepta Provides Safety Update for ELEVIDYS and Initiates Steps to Strengthen Safety in Non-Ambulatory Individuals with Duchenne
CAMBRIDGE, Mass.--(BUSINESS WIRE)--Jun. 15, 2025-- Sarepta Therapeutics, Inc. (NASDAQ:SRPT), the leader in precision genetic medicine for rare diseases, today provided a safety update regarding ELEVIDYS (delandistrogene...
Wave Life Sciences Shares 48-Week Data from FORWARD-53 Trial of WVE-N531 in Duchenne Muscular Dystrophy
Dear Members of the Duchenne community,We are excited to share positive data following 48 weeks of dosing in the FORWARD-53 clinical trial evaluating the investigational molecule...
Duchenne Care Conference 2025
The World Duchenne Organization is thrilled to announce that registrations are now open for the Duchenne Care Conference 2025. The online conference is taking place on...
Sarepta Therapeutics Shares Safety Update on ELEVIDYS
CAMBRIDGE, Mass., March 18, 2025 -- Sarepta Therapeutics, Inc. (NASDAQ:SRPT), the leader in precision genetic medicine for rare diseases, shared the following safety update related to...
Dyne Therapeutics Announces New Long-Term Clinical Data
Dyne Therapeutics Announces New Long-Term Clinical Data from Phase 1/2 DELIVER Trial of DYNE-251 in Duchenne Muscular Dystrophy Demonstrating Unprecedented and Sustained Functional Improvement Through 18...
Edgewise Therapeutics Topline results from phase 2 Becker Canyon trial of Sevasemten
- Trial met primary endpoint of reduction in circulating levels of creatine kinase (CK), a biomarker associated with skeletal muscle damage, in the largest Becker interventional...
Update to the Duchenne Community from Percheron Therapeutics on Progress with Avicursen
Dear Members of the Duchenne Community, Today, Percheron Therapeutics, a public company registered in Australia and focused on developing treatmentsfor rare diseases with unmet medical need,...
No Life Insurance Discrimination For Those With a Genetic Condition
Australian Government bans genetic discrimination in life insurance: A big win for preventive health Following the recommendations of a report led by Monash University’s Dr Jane Tiller...
Final Letter for Philips Recall
Philips after consultation with TGA is conducting an Urgent Product Defect Correction for the Philips BiPAP A40 Pro Ventilator, BiPAP A40 EFL Ventilator, and BiPAP A30 EFL. ...
Update to Urgent Product Defect Alert TGA Ref RC-2024-RN-00257-1- Philips Ref 2023-CC-SRC-039
Philips after consultation with TGA is conducting an update to the Urgent Product Defect Alert of Philips BiPAP A30, BiPAP A30 EFL, BiPAP A30 Hybrid, BiPAP...
Pfizer Phase 2 Daylight Study Update
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Pfizer gene therapy clinical trials commence in Australia
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...
“New Frontiers” Launched
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...
GP Submission
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...
SOSDF to capitalise on the Queensland Parliamentary Inquiry into Social Isolation and Loneliness
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...
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...
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...
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....
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...
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...
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...
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...
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...
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....
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...
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...
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...
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...
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...
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...
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...
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...
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...
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...
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