News & Updates

Becker community event to return annually after successful Australasian debut
A Becker muscular dystrophy community event held in Melbourne will return annually following a successful first gathering. The 2026 Becker...
$10,000 grant to support mental health and wellbeing for the Duchenne and Becker community
Save Our Sons has received a $10,000 grant to help support mental health and wellbeing initiatives for people and families...
Save Our Sons connects with global neuromuscular community in Japan
Save Our Sons Duchenne Foundation joined more than 1,400 international clinicians, researchers and neuromuscular professionals at a major muscle disease...
New resources support people living with rare disease and disability
People and families living with rare diseases and disability have access to a suite of updated resources to help navigate...
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...
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...
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...
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...
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....
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...
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...
Genetic Webinar Series
Genetics Webinar Series - Events WEBINAR 1 Could It Be Genetic? If you've ever wondered whether there might be a...
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...
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 –...
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...
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...
Duchenne Care Conference 2025
The World Duchenne Organization is thrilled to announce that registrations are now open for the Duchenne Care Conference 2025. The...
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...
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...
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...
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