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Save Our Sons Duchenne Foundation

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Hurlstone Park, NSW
Save Our Sons Duchenne Foundation

Save Our Sons was founded in 2008 and is now the peak body for those living with Duchenne and Becker

Save Our Sons Duchenne Foundation was founded in 2008 and is now the peak body for those living with Duchenne and Becker muscular dystrophy across Australia. Our vision is to find a cure for Duchenne & Becker muscular dystrophy. Duchenne is an X-linked genetic condition that affects 1 in 3500 boys and in very rare cases 1 in 50 million girls. It is the most common and most severe form of muscular dystrophy and is also known as dystrophinopathy, which refers to a mutation in the dystrophin gene, with a similar milder form of the condition called Becker muscular dystrophy. Funds raised go directly towards funding research and clinical trials, improving care, funding nurses and providing quality of life enhancing equipment. Save Our Sons aims to make a difference in the lives of all living with Duchenne and Becker
muscular dystrophy across Australia. Our Purpose includes enhancing the quality of life for persons with Duchenne and Becker muscular dystrophy with the ultimate objective of finding a cure for the condition.

12/10/2026

Save Our Sons was proud to have represented the Duchenne community at the World Muscle Society Congress in Hiroshima, Japan last week.

The Congress, held 29 September to 3 October, brought together clinicians, researchers and neuromuscular professionals from around the world. The programme included “Decoding Duchenne”, which explored emerging therapeutic targets and meaningful clinical outcomes.

There were also presentations on DMD clinical research and trials, alongside discussions on treatment and disease management, including care for older people living with DMD who are non-ambulatory.

International collaboration like this is vital to advancing research, treatment and care for people living with Duchenne.

Save Our Sons' Board members Miled Akle and Pierre BouAntoun, alongside team member Deb Robbins, represented the Foundation and connected with experts and organisations working to improve outcomes for the Duchenne community.

Thank you to the World Muscle Society for bringing the global neuromuscular community together and having Save Our Sons as part of these important conversations.

Read more: https://saveoursons.org.au/blogs/news/save-our-sons-connects-with-global-neuromuscular-community-in-japan

08/10/2026

Independence is about having a say in the life you live. 💙

For Joshua, self-managing his care has given him choice and control over the supports he relies on every day.

In part three of his story, Joshua shares how changes to his NDIS plan have affected that independence and why having a voice in decisions about his own care matters so much.

06/10/2026

Registrations for Becker Education & Engagement Day (BEED) 2026 close this Monday, 12 October!

If you’re part of the Becker community or work alongside and support people living with Becker muscular dystrophy, there’s still time to register for this free event and connect with others who understand the journey.

📅 Friday, 23 October 2026
📍 The Larwill Studio, Melbourne
🕘 9:00am–4:00pm + Community Dinner 6:00pm–8:00pm
👉 Register: https://saveoursons.org.au/pages/beed-2026

Muscular Dystrophy NSW Muscular Dystrophy Australia Muscular Dystrophy Foundation Australia Muscular Dystrophy Tasmania Muscular Dystrophy Queensland Neuromuscular WA The Royal Children's Hospital, Melbourne St Vincent's Hospital Melbourne Centre for Brain Research

02/10/2026

NSW families, here’s an opportunity to have your say on the future of advanced therapies!

Sydney Children's Hospital Research Centre is inviting families to take part in the Kids Advanced Therapeutics Lived Experience Engagement Project (KAT LEAP) Workshop in Westmead later this month.

You don’t need to have received an advanced therapy to participate. If you have an interest in advanced therapies, your perspective can help inform how families access and share knowledge, and how they work with the KAT program.

📅 Tuesday, 20 October 2026 | 10:00am–2:30pm
📍 Kids Research, Westmead
Plus, $50/hour remuneration, and travel and parking cover.

Expressions of interest close 6 October, so register soon.

👉 Find out more and express your interest: www.redcap.link/KATLEAP

01/10/2026

New resources for the rare disease community 💙

Save Our Sons was proud to contribute to the development of Rare Voices Australia’s updated Rare Disease Disability Toolkit, alongside other network members.

The toolkit includes disability management plans, reasonable adjustments in healthcare, air travel and the NDIS, with additional tools to support self-advocacy. These resources are designed to help people better understand their rights, advocate for their needs and work with their support teams to navigate complex systems.

Navigating healthcare, disability and other support systems can be complex. This toolkit offers practical resources to support people and families living with rare disease and disability.

We encourage our community to explore the updated toolkit and share these resources with anyone who may find them useful.

👉 Explore the new toolkit: https://rarevoices.org.au/rare-disease-disability-project/rare-disease-disability-toolkit/

📖 Read More: https://saveoursons.org.au/blogs/news/new-resources-support-people-living-with-rare-disease-and-disability

29/09/2026

Accessibility can change the way someone experiences everyday life. 💙

For people living with Duchenne, thoughtful design, accessible technology and inclusive spaces can create greater independence, confidence and participation.

Sometimes the biggest difference comes from the simplest things: a ramp, a wider pathway, the right technology, or simply taking the time to listen and adapt.

Accessibility benefits everyone.

24/09/2026

We are heartbroken by the passing of our dear friend and long-standing Save Our Sons ambassador, Gary “Angry” Anderson.

Angry stood beside our community for more than a decade.

He was there for our first Walk for Duchenne from Sydney to Canberra in 2015. He joined us at Galas and events, appeared in our awareness campaigns, and never hesitated to use his voice and platform to advocate for families living with Duchenne and Becker muscular dystrophy.

Whenever we called, he was there.

But to our Founder, Elie Eid, Angry was much more than an ambassador. He was a friend, a fellow father and, in many ways, a mentor.

Having experienced the loss of his own son, Angry shared a deeply personal understanding with Elie. Through many long conversations over the years, he offered friendship, perspective, and encouragement to keep going.

Behind the unmistakable voice and larger-than-life personality was a man of enormous generosity and compassion who genuinely cared about our families.

Our hearts are with Angry’s family, friends, and loved ones.

Thank you for walking beside us, for believing in our mission and for always being there when we needed you.

You will forever be part of the SOS family. 💙

23/09/2026

A young filmmaker has captured a powerful story about life with Duchenne, and we’d love for you to see it.

Brick by Brick: At His Own Pace, created by Lily Stoneham as part of the 2026 Focus on Ability Short Film Festival, follows a 13-year-old boy living with Duchenne muscular dystrophy.

It’s a thoughtful and uplifting portrayal of life with DMD, and a wonderful example of how storytelling can help others better understand the Duchenne experience.

We’re proud to share Lily’s film and encourage our community to take the time to watch her work.

🎬 Watch Brick by Brick: At His Own Pace - https://focusonability.com.au/films/2026/brick-by-brick-at-his-own-pace-12233

22/09/2026

Advancing DMD research starts with collaboration.

Save Our Sons was pleased to attend the Genetic Alliance Australia Forum at Parliament House, bringing together people working to improve outcomes for Australians living with genetic conditions.

The evening was an opportunity to reconnect with those involved in the DMD Newborn Genetic Screening study at Sydney Children's Hospital, an initiative supported by our Foundation.

Thank you to Professor Bruce Bennetts, Genetic Counsellor Jessica Lu, Project Manager Sarah Shin and the wider research team for your contribution and continued commitment to improving outcomes for people living with DMD.

Read the full story: https://saveoursons.org.au/blogs/news/save-our-sons-brings-duchenne-communitys-voice-to-nsw-parliament

20/09/2026

Meet Joshua Ruff. 💙

Following a cardiac arrest in 2020, Joshua began designing Henle Gardens from his hospital bed, finding a new sense of purpose during an incredibly difficult time.

Today, Henle Gardens and its lavender farm are a reflection of that journey and something Joshua continues to enjoy and grow.

This is Joshua’s story.

Address

Shop 3/570 New Canterbury Road
Hurlstone Park, NSW
2193

Opening Hours

Monday	9am - 5pm
Tuesday	9am - 5pm
Wednesday	9am - 5pm
Thursday	9am - 5pm
Friday	9am - 5pm

Telephone

+61295546111

Website

http://www.saveoursons.org.au/

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