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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.

17/06/2026

Confidence. Connection. Independence.

Thanks to a generous grant from Seven Hills RSL Club and our community, Save Our Sons was recently able to sponsor four boys living with Duchenne and Becker muscular dystrophy to attend an Adventure Camp with Muscular Dystrophy NSW dystrophy this year.

Across five days, they challenged themselves, built new friendships, tried new activities and experienced the joy of being surrounded by peers who understood their journey.

For some, it was their first time away from home. For others, it was the confidence that came from trying something new, making friends or discovering they were capable of more than they thought.

These experiences matter. They help build independence, resilience, connection and a sense of belonging that lasts long after camp ends 💙

16/06/2026

Living with Duchenne affects more than physical health.

For many boys, fathers, brothers and carers, the emotional impact is carried quietly through the day-to-day realities of appointments, uncertainty and planning for the future.

Research shows people living with rare diseases experience significantly higher rates of anxiety and depression than the general population.

This Men’s Mental Health Awareness Week, we want to acknowledge the men in our community and remind them that support matters, connection matters and no one should have to carry it alone.

Checking in on someone doesn't have to be complicated. A conversation, a message or simply making time to listen can make a difference. 💙

10/06/2026

Last week, Save Our Sons CEO attended ANN & AOMC 2026 in Perth, joining clinicians, researchers, allied health professionals and patient organisations from across the region.

One of the most important conversations centred on what happens as people living with Duchenne grow older.

With advances in care and treatment helping people live longer, there is a growing need to ensure support continues throughout adulthood. A presentation by Professor Ros Quinlivan highlighted the importance of planning early, strengthening adult services and supporting both individuals and families through the transition from paediatric to adult care.

It was a valuable reminder that improving outcomes isn't just about helping people live longer. It's about ensuring they can live well at every stage of life.

Thank you to everyone involved in delivering such an important congress. 💙

30/05/2026

Charlie is 16 and living with Duchenne muscular dystrophy and Persistent Hyperplastic Primary Vitreous.

Duchenne affects around 1 in 4,500 boys. PHPV occurs in approximately 1 in 20,000 people. Together, Charlie’s diagnosis makes him one in billions.

Duchenne is a progressive condition. Over time, it has taken Charlie’s ability to walk, and his care needs continue to grow. Despite this, he remains engaged, curious, and full of personality.

Behind Charlie is a family committed to doing everything they can, raising awareness, advocating for support, and navigating the increasing demands of care, equipment and treatment.

“We have one opportunity to get this right. We do what we can.”

This is where community matters.

We are sharing Charlie’s story to help build awareness and open up opportunities for support, whether through networks, partnerships, or simply helping his story reach further.

And follow Fighting For Charlie to learn more.

28/05/2026

Meet Michael 👋

Michael is 51 and living with Duchenne muscular dystrophy.

He grew up in a time where there was very little support, no roadmap, and far fewer options than exist today.

But Duchenne has never held him back.

Michael has built a full and independent life, shaped by his own choices, interests and perspective.

He’s an artist, working across projects from logos and tattoo concepts to skateboard design collaborations.

He lives independently, supported by a strong network around him, and shares his life with his partner, Ali. Together, they’ve travelled extensively across Europe and Japan, finding ways to experience the world on their own terms.

“I’ve never accepted other people’s version of who I’m supposed to be… I see myself as more than my Duchenne. It’s one part of who I am.”

Thank you Michael for sharing your story with us 💙

27/05/2026

Recently, Save Our Sons caught up with Jack and Kevin to talk about The Wheely Good Guys 💙
A peer-led Discord group they created for boys and men living with Duchenne muscular dystrophy.
The space offers a way to connect with others across Australia, build friendships, and have open conversations about what life looks like now and into the future.

Join the group here: https://discord.com/invite/A3zzEqQCsT?fbclid=PAZXh0bgNhZW0CMTEAc3J0YwZhcHBfaWQMMjU2MjgxMDQwNTU4AAGnGlESKRpPMpItpsC0dJiWkyJAvsP9MqzgebnrnYGJu1zZB8YNzXGdGo6ahr4_aem_q15z6IiZPqHhc9MvU_p2iw

14/05/2026

Ready for a night of fun for a great cause?

Join us for the Save Our Sons Casino Royale on Friday June 19th at Canterbury Leagues Club! 🕺💃

Hosted by, MC Rob Shehadie, all funds raised will support Save Our Sons Duchenne Foundation, helping fund life-saving medicines, critical research, and specialist care for those living with Duchenne. 💙

📆 Friday June 19th, 2026
⏰ 6:30pm arrival time
📍Canterbury Leagues Club

For tickets and to learn more, head to the link in bio.

11/05/2026

"It's very important that the young men and their parents ensure they do what they want and they achieve what they want. They don't let Duchenne define them; they define themselves."

Meet Jack and Kevin, the founders of the Wheely Good Guys, a peer-led group built on connection, shared experience and support.

Kevin is working in rugby league and hopes to coach in the future, while Jack has completed a Bachelor of IT and now works full-time.

We recently caught up with them to talk about life, perspective, and how they approach Duchenne on their own terms.

The next Wheely Good Guys meeting will be held tomorrow night, Tuesday, 12 May at 6pm AEST.

Join here: https://discord.com/invite/A3zzEqQCsT?fbclid=PAZXh0bgNhZW0CMTEAc3J0YwZhcHBfaWQMMjU2MjgxMDQwNTU4AAGndqqH4C6lvIFXAs6BnBDYoyMxgCTZ2PXKldlT65ipVpyOvlYCWBQBZKr3X9E_aem_cIiy7ljILMH4JxUVi7uzoQ

10/05/2026

To the mums raising boys with Duchenne 💙

You carry more than most people will ever see.

You are the ones showing up through every stage of Duchenne.
Advocating, organising, supporting and loving your boys through it all.

Your strength is found in the everyday moments.

The quiet resilience.
The care you give without hesitation.
The appointments.
The research.
The exhaustion.
The joy you continue to protect for your families.

Your boys are deeply loved because of you, and this community is stronger because of the care and support you give so freely.

Happy Mother’s Day to every mum in our community 🫶🏻

04/05/2026

It was a pleasure to welcome Catherine Stace, CEO of Muscular Dystrophy Australia, to the Save Our Sons office.

We’ve worked alongside for a number of years and value the opportunity to continue strengthening this relationship.

We look forward to continuing this work together, with a shared commitment to driving meaningful, systemic change for the communities we represent.

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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